tag:blogger.com,1999:blog-71213663730349636672024-03-12T23:25:40.717+00:00The Myasthenia Kid .....Life with possibly undiagnosed Myasthenia Gravis, diagnosed severe autonomic dysfunction and Ehlers Danlos Syndrome hypermobility type.The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.comBlogger573125tag:blogger.com,1999:blog-7121366373034963667.post-11896172183906185792022-07-21T06:00:00.009+01:002022-07-21T06:00:00.194+01:00Happier than I have ever been<p> <span style="font-family: verdana;">A few times of late I have thought about updating the blog and then something happens and I forget. It is never deliberate, I certainly never anticipated such a long break and I can't promise that I will be updating on a regular basis either. So much has happened in the last 18 months I sometimes have to stand still and take stock because life is certainly not what I expected it to be back in 2020.</span></p><!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">So for those of you who don't know me outside of cyberspace, we have moved house. After 26 years living in Exmouth in East Devon, we have moved to a small town just outside of the Dartmoor National Park. From my bedroom window I can see the Western Beacon, which is where both Mr Myasthenia Kids ashes have been scattered. We now have a huge garden, I have taken to growing plants, me the person who was always known as the black hand of death where plants were concerned.</span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">We are surrounded by trees out of the lounge window there are trees, out of the kitchen / dinning room there are trees. I have never felt so completely grounded in my life. My mental health has also never been so good. The wait of others expectations and being guilt tripped for not dancing to others' tunes has gone. Dealing with having to see people I didn't want to see on a near weekly basis in the summer has gone. The threat of people turning up at my house unannounced has gone. I am no longer forced to act as the parent, to my family. Unless you have lived through that situation you could never comprehend how much that mentally drains you. The stress that I have borne for every single day of my life has fucked off and I have never felt happier.</span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">My days are filled from the minute I get up to the minute I go to bed. Moving to a much larger abode has taken its toll on me physically but as we have been here nearly 11 weeks now I have slowly become accustomed to it. Dembe and I are out in the garden whenever the weather is dry. Dembe has got a new dog walker that takes him out for 30 minutes when his dad is working late - Mr Myasthenia KId has managed to keep the same job just transfer stores. He is working over the other side of town so I no longer see him at lunch time as he just wouldn't have enough time to travel there and back but Dembe and I are managing. Dembe has never been so happy, he loves his garden and he loves the fact his mum and dad are happier here.</span></p>
<!-- /wp:paragraph -->
<!-- wp:image {"id":2914,"sizeSlug":"large","linkDestination":"media"} -->
<figure class="wp-block-image size-large"><a href="https://themyastheniakid.files.wordpress.com/2022/07/mishca.jpg"><img alt="" class="wp-image-2914" src="https://themyastheniakid.files.wordpress.com/2022/07/mishca.jpg?w=766" /></a></figure>
<!-- /wp:image -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">We have managed to set up a hedgehog feeding station in the garden and one of Mr Myasthenia Kids leaving gifts from his workplace was a night vision wildlife camera. Watching the hedgehogs on the camera has been amazing. We know we have at least 4 visiting and we have a courting couple. </span></p>
<!-- /wp:paragraph -->
<!-- wp:image {"id":2916,"sizeSlug":"large","linkDestination":"media"} -->
<figure class="wp-block-image size-large"><a href="https://themyastheniakid.files.wordpress.com/2022/07/mum-and-baby-again.jpg"><img alt="" class="wp-image-2916" src="https://themyastheniakid.files.wordpress.com/2022/07/mum-and-baby-again.jpg?w=1024" /></a></figure>
<!-- /wp:image -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">We have so many plans for the house and the garden, plus we would like to have a holiday. The last time Jay and I went away anywhere was 2006. The last time we had a proper holiday was in 2003, so it is a long time overdue. We would like to go to Scotland, I would like to show Jay all the places I visited as a kid and go and visit our friends north of the border. Some time as a family away from the stress and strains of the last 18 months and every day life would do us both good. We are just waiting on the finaliasing of the house sale now.</span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">I am always hesitant to say life is good as I seem to spend my life waiting for the other shoe to drop. But life is ok, we love the house, we love the area and we are starting to find our way around. We have had friends over to visit, friends down to stay, friends booking in short breaks as they can't wait to start helping us tame the garden and turn it into our vision. There is no denying though the garden has good bones and will be a long term project. At the moment our hands are tied with nesting season. Many of the birds are now on their second broods as are the mammals such as hedgehogs.</span></p>
<!-- /wp:paragraph -->
<!-- wp:image {"id":2919,"sizeSlug":"large","linkDestination":"media"} -->
<figure class="wp-block-image size-large"><a href="https://themyastheniakid.files.wordpress.com/2022/07/half-the-garden.jpg"><img alt="" class="wp-image-2919" src="https://themyastheniakid.files.wordpress.com/2022/07/half-the-garden.jpg?w=766" /></a><figcaption class="wp-element-caption">This is just half the garden, as you see it from the upstairs bathroom window.</figcaption></figure>
<!-- /wp:image -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">Lots of the shrubs need massively reduced down as they have gone wild. The garden needs a whole new fence around the outside, we want to plant, well I want to plant lots of native species to make the garden as wildlife friendly as possible. I would also love a paved seating area in the corner where the gazebo is. We are currently losing at least 15ft of garden due to the over grown shrubs.</span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">We splashed some paint around the kitchen / dinning room as that was the one room that needed as much help as it could get. We had a tin of Farrow & Ball paint ( James White ) left over from where we were tarting up the old house prior to selling. The painting took a day and it felt nice to put a stamp on the decor. As we have quite a few renovations planned the rest of the decorating will be done as we complete each room.</span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">I forgot to say last month we had a baby starling fall down our chimney. We had to call out a gas engineer, on a Sunday and fathers day no less, to move the gas fire so that we could free the bird. Thankfully it was unharmed and flew out through the lounge window when it heard its mum calling for it.</span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">Health wise I am much the same. I am currently unwell due to Discontinuation Syndrome. I am currently coming off my antidepressant Mirtazapine / Remeron. I was only on 30mg and have been doing a plan as agreed with the pharmacist at my new doctors surgery. I am actually finding coming off this harder than reducing my morphine dosage, I have gone from 60mg daily to 20mg of slow release morphine. I have always been sensitive to antidepressants and have a shocking time coming off them. This one has been horrendous. I am going to have to taper much more slowly, I had got down to 15mg and started doing 15mg every other night. However since starting this part of the tapering I have been suffering severe side effects especially on the day following the night with no mirtazapine. So I am going to have to drop to 7.5mg and then do 15mg one night and then 7.5mg the next. I dont know what the fuck I am going to do after that as the side effects have floored me - flu like symptoms, diarrohea, fatigue, headache, vertigo, insomnia, sweating, nausea , dry mouth etc. Every time I come off an antidepressant it is so awful, I always say I will never do it again and yet here I am doing this for a 4th time. </span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">Reducing my morphine dose has been a bloody doddle compared to this, I have managed to get down to 10mg twice a day in 12 weeks. Which to me is bloody amazing considering I have been on the stuff since 2011. The morphine reduction was my idea and wasn't pushed on me. I started doing it myself right before we moved as it had become clearer and clearer to me that it just wasn't that effective anymore. I also panicked, probably because I am 50 next year that if I got struck down with cancer and needed pain releif I could have totally fucked myself over by being on morphine at this dose ( which isn't actually high its only when it is above 60mg twice a day / 120mg daily is classed as a high dose ). I also wanted to see what my pain levels were like without it. One of the first things I found on reducing the night time morphine dose by 10mg was I was sleeping better and I had started dreaming for the first time in years. I also felt less foggy and had more mental clarity. I was amazed at this huge improvement and thats what spurred me on to continue.</span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">At the same time I am slowly reducing the amitriptyline I have been taking for nearly two years due to the occipital neuralgia caused by the car crash. As I am not sewing as much currently the pain is better although I still have nerve pain in my left arm. </span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">As you can see my life has changed in just so many ways, sometimes i just have to take a minute to catch my breath and recognise how far I and we have come. Despite having Mirtazapine withdrawal issues I am still feeling really happy, grounded and settled. Much more than I have ever done in my life</span></p>
<!-- /wp:paragraph -->The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-32158136121561942802022-02-24T06:00:00.015+00:002022-02-24T06:00:00.188+00:00Bigger break than expected<p><span style="font-family: verdana;">I never intended to be away this long from the blog and I can't promise that I will get back into regular posting any time soon. However those of you who have followed me for a while deserve an update so here it is.</span></p><p><span style="font-family: verdana;">Over the last few months Mr Myasthenia Kid and I have been sorting out his late mothers estate ready for probate ( this is a thing we do in the UK, it just means that the will that has been left is legally binding and that inheritance tax is sorted if the estate is worth more than a set amount ). We have also been winding up her accounts and any payments due. At times this has felt like a full time job, every day off during the week Mr Myasthenia Kid and I have had to make various phone calls etc with some company's being</span> <span style="font-family: verdana;">so inept even when dealing with a bereavement team that multiple phone calls have been made, letters to CEO's have been delivered and on a few occasions we have been awarded compensation due to the mess they have made.</span></p><p><span style="font-family: verdana;">It seriously feels like we haven't had a day off from this in months and now whilst probate has been granted and the last little bits and pieces are getting done, we now have to sell our home of 18 years. </span></p><p><span style="font-family: verdana;">Selling a house is stressful, combine that with the loss of both of your husbands parents and the stress levels rocket to something you have never seen before. When I do get a minute to call my own, which is really bloody rare currently it is mainly spent zombie like due to exhaustion. I am waiting for an enormous crash, my health has taken some really dodgy turns over the last few months. On a couple of occasions I have almost called 999 for an ambulance as I have had bowel adhesion pain so bad I have passed out. I have had week's of non stop migraines triggered by occipital neuralgia and that has then impacted my sleep. At least once a week we travel down to the new house to ensure that everything is ok and that is also adding to my levels of fatigue. I have got to the point of just wanting the whole silly game to be over with and we only had the photos taken by the estate agent this morning - I am writing this on Wednesday.</span></p><p><span style="font-family: verdana;">Our home has had to have some decorating done and some tidying up in places. It is hard work scheduling everything in when you have so many different things to deal with. Finally things are coming together and we are in a position where we can put our happy home up for sale. Which I never ever thought we would do as after moving here in 2003, I categorically stated I would never, ever move house again! </span></p><p><span style="font-family: verdana;">I know that we are really lucky in the fact we can move our belongings into the new place and not have to do a mad one day move that is the norm. I can't wait to have my bed down at the house as the bed that is there at the moment isn't very comfortable. It is always the same though isn't it? There is nothing like your own bed. Although Mr Myasthenia Kid reckons he sleeps better at the new house than he does here.</span></p><p><span style="font-family: verdana;">Our current home is now just a shell, all we have left to move down are the white goods, my bed ( including mattress) and some bits and pieces. The rest is either being left for the new owner or given away via a local group on Facebook to families in need. I often go to put something away and realise that I no longer own it or it is down at the new house. It does feel like we are constantly living in limbo not quite belonging here but equally not 100% belonging there.</span></p><p><span style="font-family: verdana;">My emotions are all over the place, I go through regular waves of overwhelming sadness at losing my in laws, leaving this house, leaving my home town of 26 years, leaving my friends and valuable support network. To then being filled with excitement at the new adventure before us, coming up with plans for the garden and colour schemes for the rooms. At times it can feel quite wrong to be pleased about the new house because it came at such a high price. There is just so much to process that I just don't have any desire to write either blogs. I need a break from everything but I can see it being a few months until we actually do finally feel grounded again.</span></p><p><span style="font-family: verdana;">So due to this my blogging maybe sporadic as it has been since October. Sometimes life just gets in the way. With so many changes happening in a small period of time, I simply can't keep all the plates spinning like I did when life was a tad quieter and simpler.</span></p><p><span style="font-family: verdana;">Keep everything crossed for us that the house sale goes smoothly, we could do with a bit of good luck for a change!</span></p><p><span style="font-family: verdana;"><br /></span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-1799828125050648282021-12-02T06:00:00.001+00:002021-12-02T06:00:00.180+00:00An update<p> <span style="font-family: verdana;">I had no idea when I posted last, that the day it went live would be the day we received a phone call from the hospital to say that my husband's mum had taken a turn for the worse. The hours drive down seemed to take days rather than minutes. My husband dropped me and Dembe off at his parents house whilst he made his way to the hospital. </span></p><p><span style="font-family: verdana;">Despite knowing she was terminally ill, we believed she had more time. We had been through exactly the. same with Mr Myasthenia Kid's, dad back in April. I know some people think it is better to know that someone is coming to the end stage of their life as they will have the time to say what the need to say. All I can tell you is that there is never, ever enough time. Just like that Mr Myasthenia Kid became an orphan and all that shared history was gone. There are things he will never know now that his parents are gone and my heart breaks for him. I know my situation is different I chose to walk away from my family after years of emotional / narcissistic abuse. I had done my mourning or so I thought. </span></p><p><span style="font-family: verdana;">His loss has become my loss as I watch him constantly for signs of depression, of something more than grief. There are days I see his eyes fill with tears when something on the TV comes on that reminds him of his parents. There are days when I have to tell him the same thing over and over because he is so overwhelmed by his loss that it is impossible for him to absorb any more information. I want to wrap him up in cotton wool and take his pain away but that isn't how this works. There are no words of comfort, just a hug or a hand squeeze to let him know I am here and I will hold us together until things get a bit better.</span></p><p><span style="font-family: verdana;">There are nights he wakes up at 2 or 3am re-living her final moments, he hasn't told me much, he can't find the words. All he says is it is the way she looked the sound of her struggling to breathe that comes into his dreams as his subconscious tries to process all he has been through in the last 7 months. He has looked as bad as he did when Frankie and Mollie ( our dogs ) passed away within 7 days of each other. I have feared that he would become seriously ill due to the grief and pain of it all. All the time my anxiety reaching new levels, whilst I cling onto anything I can control because the world feels like it is spinning out of our control.</span></p><p><span style="font-family: verdana;">I have managed to help him with the jobs that have to be done after someone has passed away. Many of the different companies have online forms that you can complete to be able to notify them. It is only EE the mobile phone company that have been dreadful so far. Asking insensitive questions for information like passwords to my late mother in laws accounts, which had she shared with us would have made the security of her account null and void. I let rip at that one as I was so sick and tired of the complete lack of care. Initially they told us we had a £164 debt to clear only when I got to the billing department they told us there was no money outstanding. I was only passed on to the billing department as I refused to pay had I not stood my ground then they would have made money off our grief that day.</span></p><p><span style="font-family: verdana;">I am grateful for the fact I have been able to help him, I could see how much it tortured him having to go over time and time again that his mother had passed away. It took over 4 hours to notify all the companies that we could. I was drained both mentally and physically after that and I wonder how anyone who has suffered a bereavement could cope having to do that all alone. I wish there was more that I could do to help him.</span></p><p><span style="font-family: verdana;">I really don't know at the moment when I will post again. I am beyond exhausted and there is still so much to do. We will be moving house so we are sorting out our current home so that we can get it on the market in January 2022. We started having a big sort out in the summer so a lot of it has been done already but we have lived here for 18 years so we have 18 years worth of belongings to sift through. We laugh now at how huge this house seemed after moving here from our one bedroom flat. There are lots of emotions tied up with leaving this house and starting a new life in an area we have never lived before but we will have family around us so we aren't so isolated. </span></p><p><span style="font-family: verdana;">So that's the state of play, other than all of the above we are ok. Dembe has been a champ ensuring his dad is comforted all the time. He has been sleeping in his room a lot now so that Jay is looked after. Dembe has been a huge comfort to us all through this.</span></p><p><span style="font-family: verdana;"><br /></span></p><p><br /></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-82266884424654065582021-10-28T06:00:00.007+01:002021-10-28T06:00:00.200+01:00Self care<p><span style="font-family: verdana;"> Firstly I am doing a lot better than I was doing last week. I got some diazepam from my doctor which stopped the spasms and allowed me to just reset everything so that I wasn't in constant pain with the occipital neuralgia.</span></p><p><span style="font-family: verdana;">I have had a few more bouts of bowel adhesion pain, I have no idea what is triggering it other than possibly stress. As usual there are things going on that I can't blog about as they are deeply personal and private. The stress is also contributing to a few visits of insomnia. Today my tired is tired! </span></p><p><span style="font-family: verdana;">So I have reluctantly decided that I need to have a break and step away from the blog for a couple of weeks. Coming up with a post every week is adding more pressure to me and life is already hard enough at the moment. I would have been having a break next week anyway as it is mine and Mr Myasthenia Kids birthday. When I will be back? Sadly I can't say at the moment. I don't envision it to be any more than a few weeks at most. </span></p><p><span style="font-family: verdana;">Sometimes I just need to catch my breath and take the pressure off myself. Mr Myasthenia Kid, Dembe and me are all ok, so please no one panic about us. There are things going on outside of us which is not for me to discuss and for it to be out there in the world. At some point I will be able to say just not right now.</span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">For now self care takes priority.</span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-39091571100000603872021-10-21T06:00:00.001+01:002021-10-21T06:00:00.223+01:00A Sh*tty Week<p> <span style="font-family: verdana;">You know when you have one of those weeks when it feels like your body is going through a checklist of every condition you have and providing you with all those symptoms? No - lucky you! Yes- you have my sympathy. I have just been through one of the toughest weeks I have had in a long time, it has been relentless the onslaught of health issues. It feels never ending and I have no idea why this week has been like this.</span></p><p><span style="font-family: verdana;">I don't like to make a big thing of it on social media. Most of my friends also have chronic illnesses and are dealing with their own shit. They don't need to hear me moaning about mine. There are two people are am truthful about how I am actually feeling on a day to day level, Mr Myasthenia Kid and my best Cyber mate Beverley B. Beverley and I speak daily via WhatsApp we have been really good friends for about 18 months and "friends" for nearly 3 years. Beverley started following me on Instagram just after I lost Mollie and Frankie. We would chat every few days and we just hit it off. She left Instagram so we started chatting on WhatsApp. She is hilarious and always makes me shriek with laughter. Mr Myasthenia Kid and Beverley B are what get me through weeks like this.</span></p><p><span style="font-family: verdana;">I first thought something was amiss last </span><b style="font-family: verdana;"><i>Sunday</i></b><span style="font-family: verdana;">, we went to visit a friend only to discover we had a puncture in our rear tyre. Mr Myasthenia Kid and our friend attempted to change the tyre but the wheel nuts were too tight to get off. I suddenly remembered we have cover with Green Flag and called them out. By the time we got home, an hour later than planned, it was like someone had taken my batteries out. I was so tired I couldn't think straight let alone string a coherent sentence together. If I call it fatigue that really doesn't do it justice. I took my blood pressure boosting medications just in case I had low blood pressure as that make me tired but they didn't halt the fatigue. By 1700 I was in bed, I really couldn't handle attempting to sit upright etc. </span></p><p><b><i><span style="font-family: verdana;">Monday</span></i></b></p><p><span style="font-family: verdana;"> I had my hairdresser come and sort my hair out. I took a photo of myself the other week cuddling Dembe and all I could see were the grey hairs framing my face. I then realised I was long overdue my hair being done as it was last cut and highlighted on 26th July! Whoops. I knew I would be tired after having that done so deliberately ensured that I had no plans at all for the remainder of the day. It was a Netflix and crochet afternoon. By 1900 I was shattered again but not as bad as Sunday. The main symptom today was period pains with no period accompanied with terrible hot flushes. The hot flushes were the kind where your bra and knickers are soaked and you feel so manky you need to go and have a shower and change. Which when you have a limited amount of energy to start with is no fun.</span></p><p><b><i><span style="font-family: verdana;">Tuesday</span></i></b></p><p><span style="font-family: verdana;"> Knackered again. Today it was back spasms. Every time I lifted my arms I would get an electric shock which would cause me to take a sharp intake of breath. My coccyx was also sore all day and I have absolutely no clue why. I just couldn't get comfortable lying or sitting.I stayed up until 7.30pm as Mr Myasthenia Kid was working the night shift and I knew it would be hours before he would leave for work. However by 19.30 I was so uncomfortable I couldn't stay up any longer.</span></p><p><i style="font-weight: bold;"><span style="font-family: verdana;">Wednesday </span></i></p><p><span style="font-family: verdana;">The first day of the week where I have felt relatively ok. I slept with Jay out of the house but I did keep waking with any sort of noise, so slept lightly . It wasn't my usual level of sleep. As I was feeling ok I decided I would work on my wall hanging that I have been making for the last month or so. During the afternoon I noticed every time I stood up my head hurt. Which when this happens I always freak out as it can be the sign of a CSF ( cerebral spinal fluid leak ) leak. I have had two previous spontaneous leaks and I really don't want to have it happen again. I decide not to dwell on it and use the fact both Dembe and Jay are in bed asleep to crack on with something I enjoy. By the time I finish my neck and back are screaming. I end up getting two hot water bottles one for my lower back and one for my neck. This helps it ease a bit. What I can't get over is how utterly exhausted I am.....again. The fatigue this week has been utterly overwhelming. I am in the position where stringing a sentence together or holding onto my train of thought is difficult. Jay is knackered too after the nightshift, we end up going up to bed at 18.45. Jay is asleep soon after, I am awake until around 10pm.</span></p><p><i style="font-weight: bold;"><span style="font-family: verdana;">Thursday </span></i></p><p><span style="font-family: verdana;">I wake up and from that minute on-wards for the next few hours I have diarrhoea. I ended up taking 6 Imodium to stop it as it is exhausting constantly having to get to the bathroom in a hurry. My stomach is cramping really badly. I have a conference video call with Facebook this afternoon and I am wondering if I will be able to a) cancel without too much fuss or b) attempt to get through it. I am a coward and seeing that two other people have pulled out already I decide to put on a brave face and attend the call. I have so much makeup on trying to look like I am not a corpse it is crazy. I have drunk 4 cups of peppermint tea in an attempt to soothe my angry bowels. Thank god the imodium has worked. However the last 30 minutes of the video conference are sheer agony. Out of nowhere my bowel adhesion pain starts to kick off. It was so bad I was envisioning that I would faint during the video call. I keep praying that whoever is running the meeting will call time before I collapse. I can barely breathe the pain is so intense. It is like a hot knife has been plunged into my abdomen and is being dragged through my entrails. The call ends and I get upstairs as quickly as I can to take every single pain killer available. If I can't get on top of the pain I am going to have to call an ambulance. I am not being melodramatic, I am on an 8.5 out of 10 on my pain scale. 10 for me is passing out with pain and this is getting close. I message Mr Myasthenia Kid, telling him I am in a bad way. I don't want to stress him out but I also don't want it to be a surprise if I tell him I need him home now. Then as quickly as it came on, the pain lessens and disappears over the space of an hour. I am yet again left exhausted, too fucked to do anything. I'm in bed by 1800.</span></p><p><span style="font-family: verdana;"><b><i>Friday</i></b> I thought after the week I had the universe may take it easy on me. Who am I kidding? The universe hasn't finished with me yet. I wake up with a migraine, I take sumatriptan and 3 alka seltzer. I am really out of it and spend the morning lying on the sofa. Doing little bits and pieces on Facebook to put a Guide together for new members on the group I help admin. I am getting fed up with constant exhaustion not just fatigue . The migraine goes, well it recedes enough for me to be able to spend an hour or so on my embroidery machine faffing around. However I have now been left with vertigo. I have to be really careful not to turn my head too quickly or I fall over. Not just stagger but fall over end, up on your arse, fall over catch my drift? Half way through doing the piece that I am working on I am wondering if this was such a good idea. The problem is now I have started I can't stop. If I do it will cause issues with the design and it may not line up properly again when I start again. Which means 30 minutes worth of work will be for nothing. I have never been able to accept that there will be days even weeks sometimes when I can't do the things I want to. So I push myself well beyond what I should. I end the day with a resurgence of my migraine, more sumatriptan and alka seltzer. I do go to sleep early.</span></p><p><b><i><span style="font-family: verdana;">Saturday</span></i></b></p><p><span style="font-family: verdana;">I wake up at 4am, I try really hard for almost two hours to get back to sleep but I can't. I am still fucking exhausted but no amount of sleep relieves the fatigue. Within minutes of being upright it is obvious that yesterday's migraine is back for an encore. Why it won't just fuck off and leave me alone I have no idea. At least the vertigo has gone. At 06.30 I go back to bed, I take my usual cocktail sumatriptan and 3 alka seltzer - I feel like I should have shares in both. I still don't get back to sleep. I lie listening to a podcast about the Salem Witch Trials, it is interesting but I would much rather be asleep. At 08.30 I give up and get up. I feel drunk due to the tiredness. My head is hurting but it is at bad headache level rather than migraine ferocity. I have got to the point where I really want this week to fuck off and do one. Is it too much to ask for a break? I can guarantee that most social media acquaintances think I have had a good health week because I have produced a few bits of sewing this week. What they don't see is the other 99% of the time when I am having my arse kicked by multiple conditions . Being able to produce those few pieces of creativity is what keeps me going when a week is as shit as this one has been. Today will be mainly spent lying on the sofa wishing I was able to actually do the things I want to today.</span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">So fingers crossed for a better week eh?</span></p><p></p><p><!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph --></p><p><span style="font-family: verdana;">PS I forgot to mention the numerous episodes of pre-syncope throughout the week!</span></p><p><br /></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-92178725797255480412021-10-14T06:00:00.001+01:002021-10-14T06:00:00.217+01:00Weathering the storm - keeping a relationship strong<p> <span style="font-family: verdana;"> It has been a busy week here and I simply haven't left myself enough time to write a blog piece this week and rather than give you nothing here's one I made earlier. I thought I would re-blog this post from May 2014, I know I have re-blogged this post before but I do think this one is important and we can all forget that relationships suffer due to a loved one becoming sick.</span></p><div><span style="font-family: verdana;"><br /></span></div><span style="font-family: verdana;"><span face="Verdana, sans-serif">Chronic illness / disability can and does destroy relationships. Suddenly the husband / wife / partner moves from the role they assumed when you got together to one of carer and in my case he also became the bread winner. That kind of stress can blow apart even the strongest of unions. With so little support available to those that take on the role of carer its no wonder so many of them end up with mental health issues such as anxiety or depression.</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">Families can be supportive or can completely distance themselves and provide no support at all for the couple whose lives have been so dramatically changed. Families can be a destructive force, doubting that the person is even sick or minimising the extent to which the disability affects them. They can also be instrumental in the break up of a relationship, by telling the carer to leave / divorce the person who has become sick, so that they can resume a "normal life". Whilst some partners may jump at that perceived lifeline, those that don't find their relationship with those who offered it fractured beyond repair. The anger caused by this "helpful" offer bubbles away under the surface and only serves to increase the burden already placed upon them in their new role. When your family withdraws support from you due to a spouses / partners sickness it just adds to the isolation that is already acutely felt by the carer. Once things like that have been said they can never be taken back.</span><br /><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">So how do couple remain together when faced with the situation where one becomes the carer for the other? I don't have any magic solutions, its a situation my husband and I have had to deal with for the last 7 years and we are still becoming accustomed to it whilst my illness decides to fluctuate in the extreme.</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">Its easy when you are the one that is chronically sick to become so wrapped up in what is happening to you that you forget the needs of your partner. You forget the stress you are inadvertently causing them, especially if they have to leave you everyday to go to work and they don't know what state they will find you in when they return home. I want to tell you this is totally normal, you have embarked on the strangest journey in your life, with weird and wacky symptoms cropping up daily and you will for a time become totally self absorbed. However the time does come where you become accustomed to what's happening and you will once again be able to look at the bigger picture - life as a couple facing this situation head on together. Weathering the storm.</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">Facing things together is one of the most important things you need to do to weather the storm. For the carer this means attending hospital/ doctor appointments whenever you can (its not easy if you're working, employers can be inflexible and unsupportive when you ask for time off). For the partner /carer it means believing in your spouse and not the doctors. What do I mean by this? Well there came a time when my old gp and hospital consultant were convinced that I was suffering from somatoform disorder / conversion disorder. My husband knew this wasn't the case, he had seen me faint, my lips turn blue from lack of oxygen and had read the pulse ox reading of 84% oxygen saturation. He had also witnessed my blood pressure readings of 80/54 and although he is not at all medically minded he knew that I couldn't "fake" these symptoms. He also knew the last thing in the world I wanted to do was be sick and end up having to give up a job I loved. He supported my quest for answers, listened to me as I ranted and raved about the idiot doctors who didn't seem to understand the basics of the human body. He may not have understood the things I was talking about but he listened and that was incredibly important. He held me when I sobbed for hours and he tried to make things better.</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">I feel a tremendous amount of guilt for being sick, I know that there is nothing I have done that has made me sick but I still feel guilty for changing both our lives beyond recognition. I feel guilty that some days within minutes of my husband getting home from work I have to go to bed. I feel guilty about the stress I cause him when I am sicker than normal and he has to leave the house for 9 hours whilst he goes to work. I feel guilty that by default that my sickness has fractured his relationship with his family. I feel guilty that I (and external factors outside of our relationship) have triggered such anxiety in him that he now has to take medication. The things that make me feel guilty are endless. He takes everything in his stride. It would be so easy for my guilt to turn to anger and then because he is the one I see everyday, for my anger to be taken out of him.</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">It's incredibly important as the one who is sick to try and recognise where your anger is coming from. Your partner is not your whipping boy to have all your frustrations taken out on. Its hard sometimes not to snap or berate him for perceived faults but its not him I am angry with, its this condition and it is not and nor has never been his fault. Its important that you recognise that, no one not even a healthy couple, would put up with a raging partner for very long. That kind of anger can be destructive to a relationship so its important it is directed elsewhere. Speak to someone, a counsellor, a friend, vent on a facebook group but do not direct your anger towards those who love you and whom themselves have endured an incredible upheaval in their lives also due to the illness that has struck you down.</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">When illness takes away your ability to go out, socialise or attend family events as you both used to its important that you find things to do together as a couple that you both enjoy. Hubby and I have several programmes that we follow and when he is day off we catch up on those programmes together. It may not seem like much but its time where we can discuss things other than the mundane day to day stuff and talk about the TV programme / film. We love The Blacklist, 24, The Walking Dead, Falling Skies, The Great British Menu, One born Every Minute and 24 hours in A&E. We never watch these programmes alone they are our programmes which are to be watched together. By taking the time to "do" stuff together we keep our relationship strong.</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">I have encouraged hubby to take up activities that take him out of the house. I know that with a stressful job and looking after me he needs something where he is just him and his achievements are his alone. In the last few years hubby has taken up running - which he hates but does because it helps him manage his weight. In that time he has run two half marathons and several 10k runs. I am very proud of him, this year he is running 2 half marathons which is no mean feat. We have a medal and photograph board in our kitchen to show off his achievements. Although most of his training takes place on a treadmill at home, running helps him de-stress and takes him out of his carer role, as whilst running he can not be interrupted. It has done his anxiety / depression the world of good and helped with his weight loss.</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">He has also joined a slimming club (with some encouragement from me) so that every week he gets out of the house on his day off and meets other people. When you or your partner have a chronic illness / disability it can heavily impact both your social lives. Social interaction is incredibly important for mental health and again this has helped him enormously.</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">It is important that a carer can step away from that role and get some respite from the daily grind of work and caring. They need time to be themselves, to relax and to be able to forget for a small amount of time the pressures placed upon them. I am envious that he gets to do these things because I no longer can. I will admit here that I do get jealous and insecure when he is mixing with other women. I compare myself to them and the life that he could have. I think its only natural when you are suffering from a chronic illness / disability for your self esteem to take a bit of a bashing. Thankfully our relationship is solid enough for us to discuss my feelings of insecurity and jealousy. He understands why I feel like that and reassures me that he only wants to be with me and he respects our wedding vow of "in sickness and in health".</span><br /><span face="Verdana, sans-serif"><br /></span><span face="Verdana, sans-serif">I know that I am incredibly lucky to have my husbands support. I won't lie and say that there aren't days I could happily throttle him! No ones relationship is perfect and I am certainly not suggesting ours is. A good relationship is built on a friendship. We are each others best friends and both of us are the type of people that would never walk away from a friend because they got sick. Through my experience of chronic sickness over the last 7 years I know that many friends do walk away without a backwards glance. </span><br /><span face="Verdana, sans-serif"><br /></span><br /></span><div style="text-align: center;"><span face="Verdana, sans-serif" style="font-family: verdana;">So to break it all down here's what works for us in weathering the storm together;</span></div><span style="font-family: verdana;"><br /></span><ol><li><span face="Verdana, sans-serif" style="font-family: verdana;">Support each other through the ups and downs.</span></li><li><span face="Verdana, sans-serif" style="font-family: verdana;">See the other person's situation / point of view.</span></li><li><span face="Verdana, sans-serif" style="font-family: verdana;">Get as much family / friend support as you can to lessen the burden.</span></li><li><span face="Verdana, sans-serif" style="font-family: verdana;">Find out what the source of your anger is and don't take it out on your partner 9 times out of 10 it won't be them that you're angry with.</span></li><li><span face="Verdana, sans-serif" style="font-family: verdana;">If you or your partner is suffering with stress / anxiety / depression speak up and get help. As you can't change the situation you are in, you do need help either through counselling or through medication or both. Mental health issues do not just go away of their own accord and you need to get some help.</span></li><li><span face="Verdana, sans-serif" style="font-family: verdana;">Guilt - is a completely normal feeling for both of you to have. The sick person feels guilty that their illness has changed both your lives. The partner feels guilty that medically there is little they can do to help or change the situation. Talk about it, do not let it fester away.</span></li><li><span face="Verdana, sans-serif" style="font-family: verdana;">Find something you can do together rather than separately. Make it the thing that you always do together. For us its watching certain TV shows or films. Sometimes we also prepare meals together. Spending time with each other and not talking about the day to day mundane stuff is good for both of you.</span></li><li><span face="Verdana, sans-serif" style="font-family: verdana;">Encourage the carer to take some "me" time. Working and caring for someone is hard work and stressful. Its important that they get some respite from both. Encourage them to take up some exercise (its important they don't neglect their own health through being so focused on yours) or something where they mix with other people like a club or educational classes. It is important for them to just be themselves.</span></li><li><span face="Verdana, sans-serif" style="font-family: verdana;">Talk to each other, even couples that have been together for a long time forget this one. When communication stops, cracks can appear. Take the time to hear what the other person is saying, listening and understanding are just so important.</span></li><li><span face="Verdana, sans-serif" style="font-family: verdana;">Physical contact, sex can fall by the wayside when you are chronically sick / disabled. You're too sick, they are too tired. When sex goes physical contact can disappear as well. Its important that you show each other physically that you both still love each other.Tell them that you love them! Make sure you kiss and hug each other daily. Hold hands in the car, cuddle up on the sofa make physical contact. Sex will return however its not the thing that holds a relationship together. Love does that.</span></li></ol><div style="text-align: center;"><span style="font-family: verdana;"><span face="Verdana, sans-serif">That's how we are weathering the storm together.</span><br /><span face="Verdana, sans-serif"><br /></span><br /></span><div class="separator" style="clear: both;"><a href="http://1.bp.blogspot.com/-N0ZztwRnH5E/U4YC12i85vI/AAAAAAAADc0/U2RKxdnYQLY/s1600/1384823_10151816653224473_807361871_n.JPEG" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" height="240" src="http://1.bp.blogspot.com/-N0ZztwRnH5E/U4YC12i85vI/AAAAAAAADc0/U2RKxdnYQLY/s1600/1384823_10151816653224473_807361871_n.JPEG" width="320" /></span></a></div><span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div><span style="font-family: verdana;"><br /></span><div style="text-align: center;"><span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div><span face="Verdana, sans-serif"><br /></span>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-70880632653849031272021-10-07T06:00:00.004+01:002021-10-07T06:00:00.257+01:00Dembe<p><span style="font-family: verdana;">I don't write about Dembe all that often on this blog, mainly because he has his own blog. However this last week has been a roller coaster of emotions. I always try to share as much as possible with my readers ( and thank you for reading!) whilst holding back a little so I have some privacy. Dembe is a huge part of my life and is my baby boy. So you can imagine the emotional turmoil I was in when he had to go to the vets all day. It has had a knock on impact with my health, leaving me exhausted, several migraines and generally feeling well below my usual level of shittiness.</span></p><p> <span style="font-family: verdana;">On Wednesday last week ( 29th September ) Dembe had to go to the vets for the day to have some X-rays taken of his front legs. Dembe has had an intermittent limp for a few months this year and conservative measures of rest and pain relief were just not working. He was also showing signs of being stiff when he got up after being laid down for a while. All things we should not be seeing in a dog that isn't even three yet.</span></p><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Dembe had to have both legs x-rayed, 3 different positions for each one and to do this he would need to have a general anaesthetic. We really didn't want him to have to under go a G.A but we had done all we could and we needed to know what was going on with him and that he wasn't in pain.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Mr Myasthenia Kid dropped him off at the vets at 08.30am and so began the longest day of our lives. We were told that we should hear something by 2pm and that if we hadn't we should give them a ring. Jay caved at 13.50 as he needed to know Dembe was ok. We found out that he was fine and that he had been out for a little walk and had been to the toilet. We were told the vet should ring us back in an hours or so.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">The vet rang back around 90 minutes later and if it was actually possible those 90 minutes seemed longer than the whole of the rest of the day. Sadly she told us that Dembe has bilateral ( both legs ) Elbow Dysplasia, - you can find out more about ED <a href="https://www.bva.co.uk/media/2791/chs-elbow-dysplasia-2019-v2-web-170419.pdf" target="_blank">here.</a> The vet told us that his left leg is more badly affected than his right. However both legs are only showing very subtle changes on the x-rays. The x-rays will be sent to an orthopaedic specialist who will provide us with their expert opinion. The good news was that there were no bone fragments floating around the joint, so he wouldn't need any immediate surgery. As the condition was discovered early treatment will be conservative management, getting his weight down, physiotherapy and hydrotherapy. He will adore hydrotherapy as he is a water baby, as any self respecting Labrador is!</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">I have never been so glad to see my baby boy in all my life. He really wasn't with it when I saw him walking down the car park. Everyone kept telling us what a lovely boy he is and they thought it was so sweet that he had come down with his blue dinosaur. The vet nurse talked us through after care and said he would probably be out of sorts for 24-48 hours. She also told us that there was a risk of him having diarrhoea as that was a side effect of one of the medications he had been given. They had also given Dembe's nails a trim. She said that he doesn't like his legs or feet being touched, I said no doing his nails is a two person job! </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">When we got home I said to Jay do you think he wants to go around the block but Dembe made it clear that he didn't want to by going straight into the house and jumping on the sofa with his carrot.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-d8evXBuT9ec/YVmMhbH9rSI/AAAAAAABhlg/Kc1tu4MXY3MSLDTOoERYMv5jpgVdSmDZQCPcBGAsYHg/s4128/20210929_160526.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="400" src="https://1.bp.blogspot.com/-d8evXBuT9ec/YVmMhbH9rSI/AAAAAAABhlg/Kc1tu4MXY3MSLDTOoERYMv5jpgVdSmDZQCPcBGAsYHg/w300-h400/20210929_160526.jpg" width="300" /></span></a></div><span style="font-family: verdana;"><br /> </span></div><div><span style="font-family: verdana;">Our little space cadet was really out of it.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Dembe had a really awful time after the general anaesthetic. He cried solidly for 24-36 hours, only stopping when he slept, briefly! Or when he was eating or out for a walk. He had awful diarrhoea as a side effect of the medication he had been given. As he won't go to the toilet in the garden this meant Dembe had to be taken around the block frequently. Poor Jay was out at 9pm, 10.30pm, 1.30am, 2.30am and 5am on top of the frequent trips around the block during the day.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">The crying went on through most of Thursday, just a little whimper constantly. It was clear looking at him that he still wasn't fully out of the G.A. His eyes were like saucers. I was very relieved when his natural treat box arrived and he was very interested in it. The chewing broke up the crying.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-7CpieRxN7RY/YVmOL6CG8OI/AAAAAAABhls/7uZinRY9blMcILgZB9AFeBDFgtlScVYFQCPcBGAsYHg/s4128/20210930_123745.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="320" src="https://1.bp.blogspot.com/-7CpieRxN7RY/YVmOL6CG8OI/AAAAAAABhls/7uZinRY9blMcILgZB9AFeBDFgtlScVYFQCPcBGAsYHg/s320/20210930_123745.jpg" width="240" /></span></a></div><span style="font-family: verdana;"><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-TSRTj5UGwqM/YVmOL4AGOWI/AAAAAAABhls/3eqWWOM2wkkUwZp--RtfeW657kU0jHdrwCPcBGAsYHg/s4128/20210930_123746.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="320" src="https://1.bp.blogspot.com/-TSRTj5UGwqM/YVmOL4AGOWI/AAAAAAABhls/3eqWWOM2wkkUwZp--RtfeW657kU0jHdrwCPcBGAsYHg/s320/20210930_123746.jpg" width="240" /></span></a></div><span style="font-family: verdana;"><br /> He had a huge hairy cows ear to chomp on and that cheered him up.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">He was so sad and pitiful it was heartbreaking that we couldn't comfort him. The first time he was really happy and started looking more like himself was when he had a present delivered from his Auntie Beverley. She had sent our beautiful boy a Turtle toy. He wagged his tail like mad and was so happy he paraded it around the bedroom!</span></div><div><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-noTVjDqg79c/YVmO2514YUI/AAAAAAABhl0/YQEw0svxg_0Wkl-SmsPKxptpnDB3vdPBACPcBGAsYHg/s4128/20210930_192926.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="400" src="https://1.bp.blogspot.com/-noTVjDqg79c/YVmO2514YUI/AAAAAAABhl0/YQEw0svxg_0Wkl-SmsPKxptpnDB3vdPBACPcBGAsYHg/w300-h400/20210930_192926.jpg" width="300" /></span></a></div><span style="font-family: verdana;"><br /></span><div><span style="font-family: verdana;">That was the first time we saw a glimmer of the Dembe we know and love since he had come home from the vets.</span></div><div><span style="font-family: verdana;"> </span></div><div><span style="font-family: verdana;">He was still having diarrhoea on Thursday during the day so I had to ring the vets and get him some stuff to soothe his belly. The vets advised us that it might take 24-48 hours to resolve.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Dembe was a lot better Friday still a bit whingey but we had longer spells between cries and he spent an awful lot of time sleeping.</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-O0kEbE_ke9A/YVma0TrXxOI/AAAAAAABhmM/wpVqSB0GsxoLTnva57bsw0c4oObz63zCgCPcBGAsYHg/s4128/20211001_123406.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="320" src="https://1.bp.blogspot.com/-O0kEbE_ke9A/YVma0TrXxOI/AAAAAAABhmM/wpVqSB0GsxoLTnva57bsw0c4oObz63zCgCPcBGAsYHg/s320/20211001_123406.jpg" width="240" /></span></a></div><span style="font-family: verdana;"><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-BeyamOm0l6Q/YVma0XmVzhI/AAAAAAABhmM/n_NwsLbuDsQEktUCQrjCxnWtfk7orP2lQCPcBGAsYHg/s4128/20211001_164403.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="320" src="https://1.bp.blogspot.com/-BeyamOm0l6Q/YVma0XmVzhI/AAAAAAABhmM/n_NwsLbuDsQEktUCQrjCxnWtfk7orP2lQCPcBGAsYHg/s320/20211001_164403.jpg" width="240" /></span></a></div><span style="font-family: verdana;"><br /></span><div><span style="font-family: verdana;">As you can see from the photos his eyes are totally different and he is fully present.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">By Saturday he was completely back to normal!</span></div><div><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-cgA4TlBCS9g/YVmbFwX4HRI/AAAAAAABhmU/_g7VHEHzKMkw0-1WOWJ9jgTR4MIbTGbmQCPcBGAsYHg/s4128/20211002_153442.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="320" src="https://1.bp.blogspot.com/-cgA4TlBCS9g/YVmbFwX4HRI/AAAAAAABhmU/_g7VHEHzKMkw0-1WOWJ9jgTR4MIbTGbmQCPcBGAsYHg/s320/20211002_153442.jpg" width="240" /></span></a></div><span style="font-family: verdana;"><br /></span><div><span style="font-family: verdana;">Yesterday (5th October) our vet rang us to give us the details of the report the Ortho Specialist had written. The specialist concurred with our vet, that Dembe does have bilateral Elbow Dysplasia. We were given 3 options 1) CT scan to provide more detailed images and then from what they show form a plan, this would involve another general anaesthetic, 2) Open up both elbow joints - arthroscopy have a look inside with a camera and see what is going on, obviously this involves another general anaesthetic, 3) manage conservatively with hydrotherapy & Physiotherapy using pain relief when needed. Mr Myasthenia Kid and I had already discussed this at length before we saw how Dembe recovered from anaesthesia and had decided on avoiding surgery if both vets concurred that the joint is showing subtle changes, which they did.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">The vet talked me through the things that we can do at home, so any slippery floors need to be covered up as much as possible with rugs. Well all our downstairs rooms are laminate flooring, I had already ordered some runners to cover large sections of the floor to stop him slipping. Upstairs the bathroom and Mr Myasthenia Kids bedroom are also laminate flooring, so I will need to get a small rug for the doorway in Jays room. The bathroom already has bath mats down. So we were ahead of the vet with actions we could take, as we were with the next few suggestions.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">The vet told us to start him on joint supplements, we started him on <a href="https://www.dogsnaturallymagazine.com/healing-with-turmeric-golden-paste-for-dogs/" target="_blank">Golden Paste</a> last week. I made up a batch for him and he is really enjoying it. I have also got coming some green lipped muscle extract and some salmon oil. Both highly rated as supplements for dogs with joint problems. I just hope I can get him to take them! He is such a fussy animal.</span></div><div><br /></div><div><span style="font-family: verdana;">We also need to get his weight down to the skinnier side of normal as this will put less strain on his legs. So we are actively trying to get his weight down, going on how he looks rather than weighing him at the vets.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Exercise, he can no longer have professional dog walks. He can no longer walk for longer than 25 minutes at a time, during that time he can't chase after a ball or play with other dogs both activities he loves because we can't risk a fracture of the elbow or making his joints worse. I am so sad for him, I can't lie I hid in the bathroom last night for a bit and just cried and cried.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Dembe has been referred for Hydrotherapy so we are awaiting the physiotherapist to get in contact with us. This will be used to strengthen the muscles around his joints and protect them in the long term.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">So last week was very full on with all the stress surrounding Dembe and what they would find in the X-rays. Dembe has been very clingy since he was in the vets for the day. But he is walking much better and is no longer as stiff as he was getting up from a lying position, that makes us happier with the decision we have made regarding conservative management.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Kx0Zjlt-Fdk/YV15VE9gpSI/AAAAAAABhsk/eCOzcJ5mnHUau-VBcTA82UKmFmaARgZ7wCPcBGAsYHg/s2576/20211004_142730.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2576" data-original-width="1932" height="320" src="https://1.bp.blogspot.com/-Kx0Zjlt-Fdk/YV15VE9gpSI/AAAAAAABhsk/eCOzcJ5mnHUau-VBcTA82UKmFmaARgZ7wCPcBGAsYHg/s320/20211004_142730.jpg" width="240" /></a></div><div><br /></div><br /><span style="font-family: verdana;"><br /></span></div>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-53191215326076758332021-09-30T06:00:00.001+01:002021-09-30T06:00:00.263+01:0021st Wedding Anniversary<p><span style="font-family: verdana;">As Mr Myasthenia Kid is on holiday this week, I have decided to write the blog post early and share some never before seen photos from when we got married over 21 years ago now.</span></p><p><span style="font-family: verdana;">We got married in Sri Lanka, I had never wanted to get married abroad but sadly the wedding I wanted ( small no more than 50 people, registry office, small, intimate reception back at my family home ) was declined by my family. They however did give the very wedding I had wanted to my sibling 7 years later. Doing all the things that they point blank refused to do with me, with her. They must have thought I was brain dead or stupid because I never gave them any sort of reaction. But it hurt me deeply and is one of the countless reasons why I have had to cut them out of my life. There is only so many times you can be abused by the people who are supposed to love you, until you eventually walk away.</span></p><p><span style="font-family: verdana;">Anyway we had a spectacular holiday and wedding in Sri Lanka. If you have never been I can highly recommend it. The hotel that we stayed at is still there just under a different name </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-_gQaKG93G1w/YVB2pdXSywI/AAAAAAABhUA/MuAP4XRiddAgF2I0l2ftNRj9wRCQ2fTvQCPcBGAsYHg/s1520/Screenshot_20210926-105631_Chrome.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="1520" data-original-width="720" height="400" src="https://1.bp.blogspot.com/-_gQaKG93G1w/YVB2pdXSywI/AAAAAAABhUA/MuAP4XRiddAgF2I0l2ftNRj9wRCQ2fTvQCPcBGAsYHg/w190-h400/Screenshot_20210926-105631_Chrome.jpg" width="190" /></span></a></div><span style="font-family: verdana;"><br /></span><p><span style="font-family: verdana;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ZfkwX5gQLgg/YVB2vrT1DFI/AAAAAAABhUE/XQGS7qhjlgAA1W8i1RD-7-Gxb-grXOafACPcBGAsYHg/s1520/Screenshot_20210926-105121_Chrome.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="1520" data-original-width="720" height="400" src="https://1.bp.blogspot.com/-ZfkwX5gQLgg/YVB2vrT1DFI/AAAAAAABhUE/XQGS7qhjlgAA1W8i1RD-7-Gxb-grXOafACPcBGAsYHg/w190-h400/Screenshot_20210926-105121_Chrome.jpg" width="190" /></span></a></div><span style="font-family: verdana;"><br /></span><p><span style="font-family: verdana;">The screen shots are from Saga Holidays which is the company I found that is using this hotel. When we went to Sri Lanka we went with Kuoni who no longer use this hotel sadly. Having had a look at the photo's it has had a massive re-model and looks amazing.</span></p><p><span style="font-family: verdana;">It was Mr Myasthenia Kid and mine first holiday abroad together, it was the first time I had been on a big aeroplane. It was also the first time I had been abroad without my family. It was incredibly daunting but we made lots of acquaintances and we are still friends with the people we asked to be our witnesses at our wedding.</span></p><p><span style="font-family: verdana;">So here are some photos from our wedding and the holiday. It feels like a life time ago we were 26 years old and look like babies! It was also back in the days where I won't say I was well but I could function well enough to work and have holidays abroad. This was also the holiday that the palm reader told me that my life would change dramatically when I was 30. At the time I laughed it off and he was 3 years out but bugger me did he see something?</span></p><p><span style="font-family: verdana;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-k6erArtkbGc/YVB4KPBXswI/AAAAAAABhUQ/qsMem_ieADcnrImJxOOhu7myeuPxsIX8wCPcBGAsYHg/s4128/20210925_164727.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3096" data-original-width="4128" height="300" src="https://1.bp.blogspot.com/-k6erArtkbGc/YVB4KPBXswI/AAAAAAABhUQ/qsMem_ieADcnrImJxOOhu7myeuPxsIX8wCPcBGAsYHg/w400-h300/20210925_164727.jpg" width="400" /></span></a></div><div style="text-align: center;"><span style="font-family: verdana;">After the wedding ceremony making our way back to the hotel on the back of an Elephant</span></div><div style="text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-tcHv1vKmMy4/YVB4Y77begI/AAAAAAABhUU/sTzJGANEujo8kK9aczG9dSFtzMVcmBafACPcBGAsYHg/s4128/20210925_165239.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3096" data-original-width="4128" height="300" src="https://1.bp.blogspot.com/-tcHv1vKmMy4/YVB4Y77begI/AAAAAAABhUU/sTzJGANEujo8kK9aczG9dSFtzMVcmBafACPcBGAsYHg/w400-h300/20210925_165239.jpg" width="400" /></span></a></div><span style="font-family: verdana;"><br /></span><div style="text-align: center;"><span style="font-family: verdana;">Watching the local dancers after the wedding ceremony</span></div><div style="text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-kPTlB7W2djs/YVB4iKxxpFI/AAAAAAABhUY/UApb9kogI6A7NckCLW5_jzl4hdqKkW5sQCPcBGAsYHg/s4128/20210925_165210.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3096" data-original-width="4128" height="300" src="https://1.bp.blogspot.com/-kPTlB7W2djs/YVB4iKxxpFI/AAAAAAABhUY/UApb9kogI6A7NckCLW5_jzl4hdqKkW5sQCPcBGAsYHg/w400-h300/20210925_165210.jpg" width="400" /></span></a></div><div style="text-align: center;"><span style="font-family: verdana;">Posing for photographs as the register is completed.</span></div><div style="text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-fO9SCx1nxUw/YVB4ww0XJvI/AAAAAAABhUc/gVZ58CXuSvgnGzFy4xbq5HRJ3lG-Qg_rQCPcBGAsYHg/s4128/20210925_165101.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3096" data-original-width="4128" height="300" src="https://1.bp.blogspot.com/-fO9SCx1nxUw/YVB4ww0XJvI/AAAAAAABhUc/gVZ58CXuSvgnGzFy4xbq5HRJ3lG-Qg_rQCPcBGAsYHg/w400-h300/20210925_165101.jpg" width="400" /></span></a></div><div style="text-align: center;"><span style="font-family: verdana;">Making our way to the part of the hotel gardens where the ceremony will be held.</span></div><div style="text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-rapuiFsnfj0/YVB49obvf9I/AAAAAAABhUg/6CbrLxkXzZwI1Ndtwjc3WJGyqnleSABjwCPcBGAsYHg/s4128/20210925_165037.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3096" data-original-width="4128" height="300" src="https://1.bp.blogspot.com/-rapuiFsnfj0/YVB49obvf9I/AAAAAAABhUg/6CbrLxkXzZwI1Ndtwjc3WJGyqnleSABjwCPcBGAsYHg/w400-h300/20210925_165037.jpg" width="400" /></span></a></div><div style="text-align: center;"><span style="font-family: verdana;">Waiting for us to start the walk to where the ceremony was going to be held.</span></div><p style="text-align: center;"><span style="font-family: verdana;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-VlJqcppSGnI/YVB5MBuNXqI/AAAAAAABhUk/5p2bOPXnjPEhQ1q4C6sGbTf7vbTVZEipQCPcBGAsYHg/s720/FB_IMG_1632556034894.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="405" data-original-width="720" height="360" src="https://1.bp.blogspot.com/-VlJqcppSGnI/YVB5MBuNXqI/AAAAAAABhUk/5p2bOPXnjPEhQ1q4C6sGbTf7vbTVZEipQCPcBGAsYHg/w640-h360/FB_IMG_1632556034894.jpg" width="640" /></span></a></div><div style="text-align: center;"><span style="font-family: verdana;">Just after we were declared man and wife</span></div><div style="text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-LB6qJ8yU6hI/YVB5cb5VclI/AAAAAAABhUs/Hmi2hwq6iyg7IChHvYE0wW_0gIefUH5ugCPcBGAsYHg/s4128/20210925_164618.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="400" src="https://1.bp.blogspot.com/-LB6qJ8yU6hI/YVB5cb5VclI/AAAAAAABhUs/Hmi2hwq6iyg7IChHvYE0wW_0gIefUH5ugCPcBGAsYHg/w300-h400/20210925_164618.jpg" width="300" /></span></a></div><div style="text-align: center;"><span style="font-family: verdana;">Our first proper photo after we had got married.</span></div><div style="text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-5s11v7JktV4/YVB5r4NYmMI/AAAAAAABhUw/cRckoJcOSIc-Tcw_YbJMIuVYtXfoUwAFwCPcBGAsYHg/s4128/20210925_165041.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3096" data-original-width="4128" height="300" src="https://1.bp.blogspot.com/-5s11v7JktV4/YVB5r4NYmMI/AAAAAAABhUw/cRckoJcOSIc-Tcw_YbJMIuVYtXfoUwAFwCPcBGAsYHg/w400-h300/20210925_165041.jpg" width="400" /></span></a></div><p style="text-align: center;"><span style="font-family: verdana;">Back at our hotel room after the ceremony</span></p><p style="text-align: center;"><span style="font-family: verdana;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-XvGsjSJ2ExA/YVB52NE10jI/AAAAAAABhU4/cjSFasewR-AkhzEg8-foraKYS7-0tq43QCPcBGAsYHg/s4128/20210925_164937.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="400" src="https://1.bp.blogspot.com/-XvGsjSJ2ExA/YVB52NE10jI/AAAAAAABhU4/cjSFasewR-AkhzEg8-foraKYS7-0tq43QCPcBGAsYHg/w300-h400/20210925_164937.jpg" width="300" /></span></a></div><div style="text-align: center;"><span style="font-family: verdana;">On a day trip to the Portugese Fort at Galle Sri Lanka</span></div><div style="text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-jWuRLJLICN8/YVB6JmQb6BI/AAAAAAABhVA/e5DptdO1vHAzuzhueUBgn5db7i7OFRs5gCPcBGAsYHg/s4128/20210925_174349.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3096" data-original-width="4128" height="240" src="https://1.bp.blogspot.com/-jWuRLJLICN8/YVB6JmQb6BI/AAAAAAABhVA/e5DptdO1vHAzuzhueUBgn5db7i7OFRs5gCPcBGAsYHg/s320/20210925_174349.jpg" width="320" /></span></a></div><span style="font-family: verdana;"><br /></span><div style="text-align: center;"><span style="font-family: verdana;">Mr Myasthenia Kid enjoying the hotels pool.</span></div><div style="text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/--WnVq-qVkKw/YVB6RTt7iUI/AAAAAAABhVE/nInYq-iwvP4JxUWcJ5a0nnsOr05n8QNkACPcBGAsYHg/s4128/20210925_174514.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3096" data-original-width="4128" height="300" src="https://1.bp.blogspot.com/--WnVq-qVkKw/YVB6RTt7iUI/AAAAAAABhVE/nInYq-iwvP4JxUWcJ5a0nnsOr05n8QNkACPcBGAsYHg/w400-h300/20210925_174514.jpg" width="400" /></span></a></div><span style="font-family: verdana;"><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Pb-xRVlh-n0/YVB6RVj1H3I/AAAAAAABhVE/CBh4Fl5z374cnropMQISkYbzZlpV1gdeQCPcBGAsYHg/s4128/20210925_174519.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="3096" data-original-width="4128" height="300" src="https://1.bp.blogspot.com/-Pb-xRVlh-n0/YVB6RVj1H3I/AAAAAAABhVE/CBh4Fl5z374cnropMQISkYbzZlpV1gdeQCPcBGAsYHg/w400-h300/20210925_174519.jpg" width="400" /></span></a></div><span style="font-family: verdana;"><br /></span><div style="text-align: center;"><span style="font-family: verdana;">Both the above photos were taken at the Sea Turtle Conservation place just down the road from our hotel.</span></div><div style="text-align: center;"><span style="font-family: verdana;"><br /></span></div><div style="text-align: center;"><span style="font-family: verdana;">I hope you have enjoyed the photos as much as we have enjoyed our little trip down memory lane.</span></div><p style="text-align: center;"><br /></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-53749851080964667682021-09-23T06:00:00.000+01:002021-09-23T06:00:00.184+01:00Bl**dy Alexa<p style="text-align: center;"><span style="font-family: verdana;">** Apologies to anyone named Alexa, this isn't aimed at you**</span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;"> Now don't get me wrong I love my Echo Dots, I have them pretty much in every room in the house, mainly so I can blast out music usually Taylor Swift as I am still girl crushing on her ( it will be a year come December that I started this relationship 😂😂😂). Since HRT was commenced back in August music has become a very important part of my life. Thank god Mr Myasthenia also has a penchant for Talyor Swift. He would necessarily put her music on himself but he has heard it pretty much every day for months and now knows several tracks off by heart and will happily sing along! Now he is totally busted 😂😂😂</span></p><p><span style="font-family: verdana;">As is usual for me I have gone off on a tangent, I mean what on earth does the above paragraph have to do with Bloody Alexa? Well me and Alexa ( Googles AI assistant ) have a love hate relationship. I have lost count how many times I have called her a c*** for not understanding what I have just said. I understand that she struggles if the TV is loud and she is figuring out which voice is giving her an instruction or if there is a loud background noise like a microwave or washing machine on spin. It isn't at those times I lose my sh*t with her. It is times like today when in the kitchen and there is no background noise and I say "Alexa put coffee pods on the shopping list". She acknowledges and puts them on the list. Then seconds later comes out with she doesn't recognise my voice and that she needs to know who I am.</span></p><p><span style="font-family: verdana;">I tell you it feels like a massive slap in the face when she says that. I am the one that bought the Echo Dots, set them up and taught her Luddite husband how to use them and yet she claims not to recognise my voice. I get it I totally do because my voice does change every day and throughout the day. This is the one thing that PoTS and possibly EDS can't explain and it is more likely my Myasthenia Gravis symptoms or whatever neurological condition is going on effecting my ability to speak.</span></p><p><span style="font-family: verdana;">Some days I find it almost impossible to speak, the only way I can describe it is that my tongue stops working forming the words or when it does attempt to form the words it moves very slowly so it is lagging behind. It is a very bizarre symptom and one I have had every since my illness reared it's ugly head in 2007. I know EDS is genetic but until 2007 I could manage it along with the PoTS and low blood pressure. Other days it can be an issue just getting enough volume for Alexa to be able to identify that someone is speaking to her. It is very frustrating that really besides my husband it is only Alexa that acknowledges my speech issues. I can't predict when I will have speech issues, as they are intermittent and going to the gp when everything is working normally is a waste of time. I really need to record myself when I am having issues or when Alexa has decided not to recognise my voice / understand my instructions.</span></p><p><span style="font-family: verdana;">Now I am not saying that once in a blue moon Alexa doesn't recognise my voice, it happens at least once a week and on a bad week it will be multiple times. She struggles daily interpreting my instructions. On occasion I will have got stuck asking her to do something, the word is in my brain but is refusing to make it to my mouth. I find Alexa is very quick to switch herself back off when you take longer than a normal person to ask a question or issue an instruction. It seem's a bit ablelist to me to expect everyone to be able to speak to Alexa within a set XX amount of seconds time frame. Not all of us have an easy time talking. I know towards the end of the day I can start to slur my words as I am just too tired to form the words properly. When Alexa doesn't get what I am saying on a bad day it rams it home how bad my speech issues can be.</span></p><p><span style="font-family: verdana;">Most of the time Alexa's inability to recognise my voice is laughed off, especially when it is followed by a stream of expletives from me. I know people with Scottish accents find they also have issues when trying to interact with AI. I have a west country twang but nothing that would make it impossible for Alexa to understand me - I believe. AI really does need to be improved so that it doesn't stop people with accents, speech impediments or disabilities from being able to use it. </span></p><p><span style="font-family: verdana;">The way that technology has evolved in my lifetime is amazing. I love using my Echo Dots. I set daily reminders for me to take medication, ask for weather reports, set timers and obviously play music on it. We also use it to record a shopping list as we find that we are getting low on a particular item. Friends have recorded voice messages and then sent them to us. That is particularly good fun! I also use the announcements in the Alexa app to get my husbands attention if he hasn't heard me shouting from upstairs. I have freaked him out several times by dropping in on the Echo Dot that is in a particular room and speaking to him directly through it. So it has helped me enormously with many different things that I struggle with. It has been a really positive experience on the whole, it is just the issues with my voice that have detracted from the experience. I still wouldn't be without them though. Even if most days I utter "Bloody Alexa"</span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-51915039880964861822021-09-16T06:00:00.003+01:002021-09-16T06:00:00.207+01:00Confidence<p> <span style="font-family: verdana;">I'm a bit calmer than I was last week and I have managed to carve out some time for myself to enjoy my creative pursuits. Which always puts me in a better frame of mind because it makes me feel like I have actually achieved something. I have struggled since being ill-health retired to feel that I make a valuable contribution to society. People always ask "what do you do for work?" or "D why Io you work?" and it is a real conversation stopper when you have to say "no I have been ill-health retired since 2008". My disability is pretty much invisible or not well understood by others, so even when I rock up in my mobility scooter or wheelchair people don't understand why I would need to use these.</span></p><p><span style="font-family: verdana;">I have in the past had family members that don't get the fact that I am in pain every day and that is all I have ever known. I don't tend to say much about it because well quite frankly talking about it bores me, so if it bores me what does it do for the other people? I am quite private which seems weird when I write a blog every week. There are very few people I am 100% honest with when I talk about how I am feeling at any given time. I learned from an early age that complaining about pain meant you weren't believed or were accused of being a hypochondriac and that was by people who should have known better as their job was to nurture and protect me. Plus as I grew up I made the mistake of being honest with people when I was in pain and it was used against me and I was told I was draining to be around. I know now that the woman I was dealing with, who was also my boss was a sociopath and completely incapable of empathy towards me and even her own family. At the time though in my 20's her attitude was very damaging and stopped me taking care of myself when I was quite seriously ill for fear of being judged by her. When working in a close environment as I was and at her mercy, I was completely paralysed with fear. These days I don't put up with that kind of treatment but it has taken me a long time to get to this point.</span></p><p><span style="font-family: verdana;">Leaving work was hugely damaging for my mental health, even though the previous two years working had been extremely damaging also, when I was with a team that refused to acknowledge my physical limitations and I was treated like a burden. My card had been marked, my face no longer fitted and the senior team decided that I was going to be worked out. I desperately hung on making myself sicker and weaker until I collapsed and there was nothing left in the tank. I was admitted to hospital and slept for 48 hours solid, only waking for the bathroom and something to eat. I was burnt out by it all, physically and mentally destroyed, it took me a very long time to claw my way back and realise that despite not working I was contributing to society in my own way.</span></p><p><span style="font-family: verdana;">This is why sewing, machine embroidery, crochet have all become so important to me. They have been an outlet for my creativity that had been stifled for so long after being led to believe I was academic and not creative. I had no confidence at all when it came to being creative. I taught myself how to sew on my sewing machine, my embroidery machine and I then two years later taught myself to crochet. Due to being pretty much housebound and obviously numerous lock downs with Covid 19, Youtube, magazines and books have been my teachers. I do find I am a visual learner however many of these videos assume a level of experience I don't possess. So when it came to sewing I threw away the rule book, warp and weft meant absolutely nothing to me and nor did cutting fabric on the bias. Mostly I have got away with throwing away the rule book. I did the same with leaning how to use an embroidery machine, I embroidered designs on fabric that the book and many fellow embroiderers would have said wasn't going to cope with a dense design. I taught myself ways of getting the fabric to behave the way I wanted and have shared what I have learned with newbies. I make mistakes, of course I do. The number of times I have managed to catch a fabric underneath the embroidery hoop and rendered what I have just spent an hour on useless. I have many towels with half designs on where I failed to secure it properly in the hoop and the design has drifted from the outline. I like perfection when I embroider and sew and it is hard for me to accept anything less. Even though I know perfection doesn't exist.</span></p><p><span style="font-family: verdana;">My creative outlet hasn't just filled a void in the respect that it has given me something to do, it also challenges me and demands that I find solutions to problems. It uses my brain in a way that I haven't done since I stopped working, which is both exhilarating and exhausting in equal measure. So it was weird this year when suddenly I became anxious about using my embroidery machine and my ability to sew. It happened out of the blue, suddenly and unexpectedly I was too frightened to sew. Something I have adored since I started back in 2017. It meant projects were started and left semi completed for months at a time. My sewing area suddenly fell silent and gathered dust. I wanted to sew I really did but I couldn't focus long enough to do it or feel confident enough to. </span></p><p><span style="font-family: verdana;">This year has been a tumultuous year with Jay's father passing away, me making a drastic change so that I walked away from those who were causing me harm and stifling my personal growth. There are also countless other things going on and I think the fear of sewing / embroidery was just a symptom of the mental anguish I was in. Eventually it got to the point where I had to use my machines as I needed to make a gift for a friend and I also needed to replace a wall hanging that I had managed to dye pink and nothing could be done to rescue it. In the end I just had to put my big girl pants on and take the plunge. I pushed myself well and truly outside my comfort zone, tackling projects I had always put off due to my lack of skill. I proved to myself I could do it and needed to stop listening to the negative voices in my head that had held me back my whole life.</span></p><p><span style="font-family: verdana;">I am rather thrilled with what I have created, it is still a work in progress and there are still days I have to force myself to get the courage to use my machines. Like the book says " I feel the fear and do it anyway".</span></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-zNbGYoRrSJ4/YUHeXOmEOjI/AAAAAAABgqo/oDX0OFHkrEIJ6lqK5VO34uxqkbNr7A2hgCPcBGAsYHg/s4128/20210913_153437.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="400" src="https://1.bp.blogspot.com/-zNbGYoRrSJ4/YUHeXOmEOjI/AAAAAAABgqo/oDX0OFHkrEIJ6lqK5VO34uxqkbNr7A2hgCPcBGAsYHg/w300-h400/20210913_153437.jpg" width="300" /></span></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><span style="font-family: verdana;"><br /></span><p><span style="font-family: verdana;">All the fabric apart from the balck background fabric is Liberty. The patterns I got from www.womabtquilts.com - spinning compass points ( the central design) and the Flying Geese ( the triangles) are from www.forestquilting.com. Both patterns were free and just needed to be printed off. It is a technique called foundation paper piecing a technique which I have done only a around 3 times before attempting this piece and now I am completely converted to it. The reverse of my wall hanging looked like this,</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-EeTLGP07eF8/YUHfWZDzjHI/AAAAAAABgq0/33i2Wmk4w5Ynuc04BEAl4Ao9GLiplNxwQCPcBGAsYHg/s4128/20210913_161208.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="400" src="https://1.bp.blogspot.com/-EeTLGP07eF8/YUHfWZDzjHI/AAAAAAABgq0/33i2Wmk4w5Ynuc04BEAl4Ao9GLiplNxwQCPcBGAsYHg/w300-h400/20210913_161208.jpg" width="300" /></span></a></div><span style="font-family: verdana;"><br /></span><p><span style="font-family: verdana;">I had great fun removing the papers although it did make a bit of a mess! </span></p><p><span style="font-family: verdana;">Dembe was very curious</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-zB8d8S2fMbU/YUHfikHBU_I/AAAAAAABgq4/1VNOV4WfbpAhw-73cXROPUidh8VZ1dHswCPcBGAsYHg/s4128/20210913_153410.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="4128" data-original-width="3096" height="400" src="https://1.bp.blogspot.com/-zB8d8S2fMbU/YUHfikHBU_I/AAAAAAABgq4/1VNOV4WfbpAhw-73cXROPUidh8VZ1dHswCPcBGAsYHg/w300-h400/20210913_153410.jpg" width="300" /></span></a></div><span style="font-family: verdana;"><br /></span><p><span style="font-family: verdana;">As I said it is still a work in progress and if I am well enough over the next few days I will be attempting to finish it.</span></p><p><span style="font-family: verdana;">My anxiety / confidence will always be an issue, I know now that sometimes you do have to fake it until you make it, pushing yourself to do the stuff you don't feel comfortable with as by running away from it makes it a much larger issue.</span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-76688212221120330402021-09-09T06:00:00.001+01:002021-09-09T06:00:00.215+01:00Stress, migraines and other sh*t!<p><span style="font-family: verdana;"> I have had a good few days over the last week with no headaches turning into migraines until this morning. Every night though I still wake up and have to change my pillows several time to make my neck and back of my head comfortable. More often than not I end up sleeping without any pillows. Something I haven't done since I was 18-19 when I had neck issues then. The problem is with being that flat I then quite often wake up with back pain between my shoulder blades. If I prop myself up I end up with back pain in my lower back. If I could just find the one sleeping position that allowed me to sleep through the night without any pain waking me up that would be fantastic.</span></p><!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">I can't really complain though after the years of insomnia I suffered from around 2008 until 2016 when I was given Melatonin. Back in the bad old days I would only sleep between 2 -4 hours a night for two nights then on the 3rd night get no sleep at all. On the 4th night I would sleep 12 hours and then feel absolutely terrible, almost like I was drunk without the fun part. I did absolutely everything I could to get to sleep, lavender sprays, lavender sachets in my pillows, not using the TV or phone in my room, all without any success. This cycle of so little sleep had a very bad effect on my mental health and my pain levels. Everything felt heightened, my pain could be off the scale frequently and my emotions were all over the place. </span></p>
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<p><span style="font-family: verdana;">This 4 day sleep cycle would just repeat over and over. I would occasionally get six hours sleep which would be a treat. The most frustrating times were when I would drop off to sleep and then two hours later wake up and that would be it for the night. I existed on cigarettes and mugs of tea. Usually one of the dogs would keep me company and they would swap over so that they all did a few hours each. Even now if I get up in the night I am accompanied by Dembe. He will either sleep right beside me, like he is doing now as I write this blog post or he will sleep on the sofa opposite to the one I am on, so he can watch my every move.</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-kWKdDNGMYps/YTiq7s_9guI/AAAAAAABgRo/3OfRQoNDqeEET_IlytAjgPR69g8CMNXJgCLcBGAsYHQ/s2048/20210908_123128.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://1.bp.blogspot.com/-kWKdDNGMYps/YTiq7s_9guI/AAAAAAABgRo/3OfRQoNDqeEET_IlytAjgPR69g8CMNXJgCLcBGAsYHQ/w300-h400/20210908_123128.jpg" width="300" /></span></a></div><figure class="wp-block-image size-large"><span style="font-family: verdana;"><br /></span><figcaption><span style="font-family: verdana;">Dembe the Labrador is curled up on the sofa, the MG Kids leg is in frame along with her Chromebook, which is open on her lap.</span></figcaption></figure><p><span style="font-family: verdana;">I cleared this morning' migraine quite quickly with a dose of Sumatriptan. However due to the stormy weather ( we have a weather alert for heavy rain and thunderstorms until this evening ) the top of my head feel's like it is in a vice and being squeezed so hard my eyes feel like they are going to pop from the sockets. For as long as I can remember I have had headaches when the weather is stormy. I feel a bit cheated though as friends over an hour away have had massive thunder storms. Mr Myasthenia Kid's mum rang us to check we were ok as where she lives they have had torrential rain and copious amounts of lightening. We have had a few showers and currently the sun is shining. It is very humid so I haven't bothered sorting out my hair. It will stay straight for 30 seconds and then frizz. There is no point wasting any energy on it.</span></p><p><!-- wp:image {"id":2825,"sizeSlug":"large","linkDestination":"media"} -->
<!-- /wp:image -->
<!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph --></p><p><span style="font-family: verdana;">This will sound completely bonkers but I am quite a private person, despite the blog and talking about all manner of things. There are things I keep private because they involve other people or because I just don't want the sympathy vote. Sometimes I am still processing stuff in my head and just don't have the energy to deal with the questions that writing about an issue will cause. Things are really stressful here at the moment, we never seem to get a minute to catch our breath. But we keep going like everyone else does because the world doesn't stop just because you are having a shit time. </span></p><p><span style="font-family: verdana;">There are several issues going on but the one that is worrying me most at the moment is Dembe ( and this was probably the source of the migraine this morning). On and off for a few months poor Dems has had an intermittent limp. Not an obvious one, one that unless you knew what you were looking for you wouldn't know it was happening. We had him at the vet's last month to be checked out and the vet couldn't observe it in him, isn't that always the way. He was put on some medication a it was hoped that perhaps it was a soft tissue injury that needed some rest and some anti inflammatory medication would help. Within a few days he was doing so much better and no more limping. As a precaution we cut his walks with the dog walkers right down to the bare minimum, ensured he didn't do anything too physical. Sadly on last Thursday the limp came back, I still had pain medication so I gave that to him. The limp settled and then on Monday was back again. </span></p><p><span style="font-family: verdana;">I rang the vets on Monday evening and got Dembe booked in for an appointment the following day. Mr Myasthenia Kid took him to the appointment as they only allow one of you into the building at the moment due to Covid. This time the vet could see the limp and she gave Dembe a full check over. Since this limp started there has been no swelling, no heat coming off any of the joints in his leg and for the majority of the time his limp is very subtle. You actually have to watch his head as he is walking towards you, every few paces his head bobs down, that's how subtle it is. It is so intermittent that we and his dog walkers have been unable to catch it on video. So the next step is x-rays of both his front legs. The vet has checked his back legs and his hips are sound. Hip Dysplasia is a massive issue within the Labrador breed and we ensured both his mum and dad had low hip and elbow scores. We also stuck to the rules about not allowing stairs until he was old enough and also we stuck to the exercise rule of 5 minutes exercise per month old. However sadly Labrador's are also prone to elbow Dysplasia and no matter all the precautions you take with your pups sometimes shit happens and this could be one of those times. I am not too concerned as he is insured, so they will pick up the tab. It is the fact that he maybe in pain, that he has to go to the vets and stay there when he has only ever been left for 30 minutes with someone else in his life since he was 8 weeks old ( other than his dog walks).</span></p><p><span style="font-family: verdana;">Those of you who have followed my blogs will know about our first dog Travis who passed away shortly before his 3rd birthday. As a teenager we also lost a family dog when she went into be spayed as she was allergic to the anaesthetic a situation that was just tragic. For some reason with Dembe I have always wrapped him in cotton wool and my fear about him having to be sedated for the x-rays really has me on edge. Plus the fact that he is coming up for his third birthday has me freaked out. I know he isn't sick like Travis was but I am just paranoid about it. If you want to read more about the dogs we have had please use these links <a href="http://themyastheniakid.com/2014/10/30/the-dogs-in-my-life-part-one/" rel="noreferrer noopener" target="_blank">http://themyastheniakid.com/2014/10/30/the-dogs-in-my-life-part-one/</a> and <a href="http://themyastheniakid.com/2015/08/06/the-dogs-in-my-life-part-two/" rel="noreferrer noopener" target="_blank">http://themyastheniakid.com/2015/08/06/the-dogs-in-my-life-part-two/</a> . I need to write part three to cover Willow, Frankie and Mollies passing within 55 weeks of each other but even though it is several years on it is still just too raw.</span></p><p><span style="font-family: verdana;">I was much more chilled with the other dogs, than I am with Dembe. I have gone back to being like a brand new dog owner and going to the vet about everything! I did feel when we brought Dembe home I had completely lost my confidence and I was always terrified I was going to hurt him ( accidentally obviously).</span></p><p><span style="font-family: verdana;">So until the X-rays come back from the orthopedic specialist we will be none the wiser as to whether he has Elbow Dysplasia or a soft tissue injury or anything in between. If it is Elbow Dysplasia depending on how bad the joint is the treatment could be conservative, treating it when it flares up, reducing his weight a little etc or it could mean an elbow replacement. The thought of which terrifies me as the recovery period is 12 weeks of crate rest which he will go bonkers, quickly followed by myself and probably Jay. So for the moment all professional dog walks have been cancelled. He is allowed 25 minutes off the lead a day and then small lead walks as he point blank refuses to go to the toilet in the garden. He has had his pain medication increased and hopefully that is helping him. The vet constantly reassured my husband that she felt whatever the issue was it has been caught early so the damage shouldn't be too great.</span></p><p><span style="font-family: verdana;">Dembe is fine in himself, loving, affectionate, eating and drinking fine. He keeps wanting to zoomies in the house so I am having to think up games we can play that doesn't involve too much food and too much movement! He is pretty chilled most of the time and is quite happy to snooze. I just thank our lucky stars that he is no longer a puppy as he would be manic with the need to burn off energy.</span></p><p><!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph --></p><p><span style="font-family: verdana;">So the migraine this morning was not unexpected as that seems to be my default setting when stressed and at least they have reduced in number since my whinge post.</span></p>
<!-- /wp:paragraph -->The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-27852670152778520172021-09-02T06:00:00.001+01:002021-09-02T06:00:00.214+01:00The last Bank Holiday of Summer 2021<p> <span style="font-family: verdana;">The last bank holiday of summer has been and gone, (celebrated in England, Wales and Northern Ireland), for many it signals the end of Summer and the start of Autumn. I can't believe it is September already, the weather is certainly letting us know it is by being markedly cooler. In some ways this year has whizzed by and in others it has crawled. It has been a strange year here at the Myasthenia Kid house, full of sadness and wishing that things could be different. It has been 8 months of constant change and things don't look very settled for the future either. Some days it feels like you are in the eye of the storm and others that you are on the outside edge of it looking in. All I can do is be there for those that need me and hope that it is enough.</span></p><p><span style="font-family: verdana;">The one bit of good news is that my headaches / migraines have eased up ever so slightly over the last week ( runs around furiously touching wood). Dare I say it I have had a couple of headache free days. Which is a miracle after the last 4-6 weeks. I did end up with a bad head last Sunday evening, mainly due to the fact I was out in the sun all day with no hat on ( my own fault I forgot to bring it with me) and I was probably a bit dehydrated as I just didn't drink enough during 5 hours that we were out. It meant I ended up going to bed very early and the following day I had issues with my blood pressure being very low. As soon as I had drunk enough I started to feel much better.</span></p><p><span style="font-family: verdana;">I ended up increasing the amitriptyline I take for nerve pain last week and that seems to have helped knock the headaches back a bit. I can still wake up with a sore neck and head but with a hot water bottle applied for an hour or so it does ease up considerably. I always try not to take medication unless it is absolutely necessary, which probably sounds ridiculous with the amount of medications I have on repeat prescription. I am always concerned that the Sumatriptan will stop working so I always try to head off a migraine before it is needed. Sunday night I ended up taking it along with 3 soluble aspirin and paracetamol as per the protocol I am supposed to follow. When I have a particularly vicious migraine this always helps massively. I have now started using the 3 soluble aspirin and paracetamol when I have a bad head that is not quite a migraine, that's usually enough to clear it. I am hoping now that I have got on top of the headaches / migraines now I can slowly put an end to this debilitating flare up that came out of nowhere.</span></p><p><!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph --></p><p><span style="font-family: verdana;">As I said earlier we all went out together as a family on Sunday, me, Mr Myasthenia Kid and Dembe. I do love it when we can escape our four walls every now and again. People don't realise how small your world can become when you are pretty much housebound. A change in scenery always does my soul good, we travelled down to see Mr Myasthenia Kid's mum and catch up with some family who were also dropping by. I saw one of my nephews who I hadn't seen in such a long time over ten years. He is so tall now and what a good looking chap he has turned out to be. He was busy organising the cutting of Nanny's lawn with the petrol Lawn mower by another of my nephews. Jay and his brother and my niece were cutting the front hedge. Whilst me and my sister in law tackled some brambles with secateurs and supervised the dogs. We got torn to shreds as we didn't have any gloves. I didn't even realise I was bleeding until I noticed the handle of my secateurs were wet. I ended up covered in plasters. It amazed me how much everything had grown in the few months since the last time I visited at the end of May. </span></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-U9QQhATMzsc/YS9fgMUfRsI/AAAAAAABfwo/Rd_V6TjYcWAZ7tGfr65ErFaulmiIzAP5QCLcBGAsYHQ/s2048/20210829_112322.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: verdana;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://1.bp.blogspot.com/-U9QQhATMzsc/YS9fgMUfRsI/AAAAAAABfwo/Rd_V6TjYcWAZ7tGfr65ErFaulmiIzAP5QCLcBGAsYHQ/w480-h640/20210829_112322.jpg" width="480" /></span></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><span style="font-family: verdana;"><br /></span><p><span style="font-family: verdana;">It is a really lovely garden and Dembe loves running around in it. Quite often we will catch him doing Labrador zoomies by himself out there. The garden is a little sun trap and gets the sun all day long, so I am gutted I forgot my bloody hat! I have never really done any gardening before, I have popped a few plants in a pot and weeded from time to time but I have never done any real cutting stuff back or pruning out the dead wood from shrubs. I actually found it rather therapeutic and it is handy that quite a bit of it can be done sat down. I did pay for it on Monday and Tuesday but like most people who are chronically sick you don't mind having a few rough days if you have actually done something to warrant it. It is when your health takes a nose dive and there is nothing you have done to trigger it that you get angry / frustrated. </span></p><p><span style="font-family: verdana;">Thanks to the bank holiday I will be completely thrown out for the rest of the week. I wont know if I am coming or going or what day of the week it is. I see Mr Myasthenia Kid has started getting the bins ready for Thursdays collection ( I am writing this on Wednesday) I will have to break it to him gently that due to the bank holiday Monday the bins wont be collected until Friday. Plus with Mr Myasthenia Kid not working a late today like he normally would that will really make my head spin and I will not have a clue what his shift pattern is until I am in front of a calendar.</span></p><p><!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph -->
<!-- wp:paragraph -->
<!-- /wp:paragraph --></p><p><span style="font-family: verdana;">The next bank holidays in the UK won't be until Christmas (I do believe we need more between September and March) as Mr Myasthenia Kid has a generous annual leave provision he has another two weeks of holiday booked between now and the second week of November. His first week is at the end of September around our 21st Wedding anniversary, I am struggling to comprehend that we are 4 years away from our Silver Wedding Anniversary ( 25 years ). He has another week booked off for our birthday at the start of November. So it isn't too long at all until I will have some company for a week during the day. With Covid and lock downs it has been more isolating than usual, which is why I enjoy visiting Nanny Morris and catching up with Jay's family so much.</span></p><!-- wp:paragraph -->
<!-- /wp:paragraph -->The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-50158026954462926652021-08-26T06:00:00.001+01:002021-08-26T06:00:00.196+01:00It's a whinge ( sorry )<p> <span style="font-family: arial;">It has been a rocky few weeks for me lately. My health hasn't been great, for some reason out of the blue I have had more issues with my neck and it is triggering more migraines. I am waking up in the middle of the night with them or they are building during the day and I am going to bed with them. I bought myself yet another specialised neck pillow in the hope that this would help and to be fair it does a little but I am still suffering with the headaches / migraines.</span></p><p><span style="font-family: arial;">It is exhausting to be continually in pain, if the migraines weren't bad enough on Sunday out of nowhere I had a really bloody awful flare up of my bowel adhesion pain that caused me to cry out in pain. It felt like I was being stabbed in the stomach. I took all my usual medications to ease the pain and slowly they worked. It was so draining though and it took a good three days for my innards to settle down and not cause issues. I am so heartily sick of these flare ups for no reason that leave me feeling out of it because I am so tired.</span></p><p><span style="font-family: arial;">I can cope with a lot of things but when there is no let up and it is one health problem after the other flaring up with no rhyme or reason it gets you down. There are so many things that I want to do creatively but have had to stop for the time being because mentally I am exhausted from the high pain levels and wouldn't be able to focus my attention for long enough to avoid making mistakes.</span></p><p><span style="font-family: arial;">I have been practising self care as much as I can and trying not to feel guilty about not getting the bits and pieces I wanted to get done. I am lucky in some respects as I don't work and I can spend time when I am able doing my sewing / embroidery crochet. I have no deadlines but it doesn't stop the guilt I have when I have spent yet another day in bed or lying on the sofa. Thankfully Dembe loves a cuddle on the sofa and he is more than happy to come up to bed and sleep now that he is that much older. I just get frustrated as none of us is getting any younger and I feel like I am wasting whatever time I have left on this planet by having to rest because I am not well enough to sit at the sewing machine or pick up my crochet hooks.</span></p><p><span style="font-family: arial;">The fatigue has been off the charts this last week. I know a lot of this is interrupted sleep and higher than usual pain levels. I always feel more tired than usual when my pain levels are not being controlled. I also made the mistake of running out of my Oramorph so have had two days without anything to deal with breakthrough pain. Despite it being the height of summer I have had more hot water bottles than ever. I am so glad that Mr Myasthenia Kid never bats an eye lid when I ask on a very hot day for a hot water bottle. I can't lie I can't wait for 5pm tonight as he is bringing back my Oramorph for me. I might get things a bit more under control then.</span></p><p><span style="font-family: arial;">Today I am battling low blood pressure, even sat down my peripheral vision is greying out. I am struggling to read as everything is blurry. It makes life just that little bit harder than it needs to be. I thank my lucky stars that both my phone and my Chromebook allow me to make all text bigger, so I can work out what is being communicated.</span></p><p><span style="font-family: arial;">I really hate the fact that I am moaning but most of the time on social media I don't mention how I am doing at all. I just don't mention my health at all unless someone asks me a direct question and even then I will downplay it. I just hate how hard everything seems to be at the moment. I know it is just a rough patch, everyone has them. I just don't seem to be able to allow myself to have them. It is as if I feel that unless I am doing something I am not worthy of others love / attention / friendship ( **delete as appropriate ). So I take enforced resting badly which then makes my mood dip. I try hard not to let it get to me but I get so frustrated that my body has decided to let me down yet again.</span></p><p><span style="font-family: arial;">I am however looking forward to the bank holiday weekend and spending some time with my boys as they keep me sane at times like this.</span></p><p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-iNJ28G62MYw/YSZNDjYiCdI/AAAAAAABfSY/P8Tl_dQenGMQcOOOTOJh70SmaIXGV0r4ACLcBGAsYHQ/s2048/20210813_fri.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://1.bp.blogspot.com/-iNJ28G62MYw/YSZNDjYiCdI/AAAAAAABfSY/P8Tl_dQenGMQcOOOTOJh70SmaIXGV0r4ACLcBGAsYHQ/w480-h640/20210813_fri.jpg" width="480" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><br /><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;"><br /></span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-67997108373348752512021-08-19T06:00:00.002+01:002021-08-19T09:12:54.013+01:00Mischief<p> <span style="font-family: arial;">I do some really daft shit when I am half asleep but last nights efforts beat anything I have managed previously.</span></p><p><span style="font-family: arial;">I have spoken at length on numerous blog posts about my dry eyes, they are worse at night and only the other week I had another episode where my eyelid stuck to my eyeball and caused a corneal abrasion that was fucking agony without a word of a lie. I have been religiously putting in my eye drops daily to prevent that situation happening again but this isn't full proof and whilst the medication is building up in my system it is till very likely to happen. So when I woke up last night and felt a little tug on my left eye lid when I tried to open my eye I knew I needed to act now to ensure I prevented another corneal abrasion.</span></p><p><span style="font-family: arial;">I stumbled into the bathroom, whacked on the light and fumbled around trying to find my eye ointment. The box was empty so I grabbed the tube that had fallen underneath. I pulled my lower lid down and started applying the product as I looked into the mirror. Even in my half asleep daze it suddenly occurred to me what I was putting in my eye was completely the wrong colour.I went from semi conscious to wide awake in a heart beat! It was too late it was already in and then the pain hit, the type of pain that hits when you have just put Blistex Lip relief cream in your eye. Its main ingredients being Camphor and Menthol. My eye ball was now on fire and all I could do was pray that I could wash this shit out.</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-jPS2LE-NJBo/YRt5FCmSxTI/AAAAAAABerM/6lx42k-e02IDH6XjfL4pgrrBuGBFU2BjACLcBGAsYHQ/s1520/Screenshot_20210817-090729_Chrome.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1520" data-original-width="720" height="394" src="https://1.bp.blogspot.com/-jPS2LE-NJBo/YRt5FCmSxTI/AAAAAAABerM/6lx42k-e02IDH6XjfL4pgrrBuGBFU2BjACLcBGAsYHQ/w372-h394/Screenshot_20210817-090729_Chrome.jpg" width="372" /></a></div><br /><p><span style="font-family: arial;">Now to be honest the tube didn't look like this however the product I managed to apply to my eyeball is no longer sold in that packaging. The old blue and white metal tube with the bright red lid is the one I had lurking on my bathroom shelf. I didn't even know I had a tube of this stuff a it has been an age since I used it. I can't believe that it was underneath the empty box of eye ointment, talk about bloody fate.</span></p><p><span style="font-family: arial;">I screamed as the menthol and camphor really began to bite, I got a flannel popped it on my cheekbone and started pouring water into my eye to try and clear the greasy ointment from it. For a few seconds it would feel ok then I would blink and then the burning would start again. Despite me screaming in pain all I got from Mr Myasthenia kid was snores. I kept pouring cold water into my eye, I grabbed some of my artificial tears to see if they would help rinse the lip cream out of my eye. As I did so Dembe charged into the bathroom carrying his bunny and wagging his tail. Although endearing it didn't help the situation at all.</span></p><p><span style="font-family: arial;">After 20 minutes of continually washing out my eye it stopped stinging but I was left with the feeling of a "Minty Fresh" eye ball which is bizarre to say the least. Every time the cold air hit my eye, it felt cold. It isn't something I would recommend. I was amazed that I didn't end up tasting the stuff as that is what normally happens with eye drops. I found the mislaid tube of Hycosan eye ointment which would have been lying side by side with the Blistex and put that in my eye. I then stumbled back to bed in my soaking wet t-shirt. Amazingly I went straight back to sleep.</span></p><p><span style="font-family: arial;">It is now 7 hours later and my eyeball still feels "Minty Fresh" it doesn't hurt it just feels cold. My vision is fine and I haven't had an allergic reaction to it which is a blessing seeing as though I tend to react to most eye ointments. I am allergic to Hycosan and only use it when my eye feel's like it is starting to stick to my eyeball. </span></p><p><span style="font-family: arial;">I think I have got off relatively lightly and thank my lucky stars that no serious damage was done. I will now make sure that there is nothing remotely similar in the basket where my eye ointment is kept that could be applied to my eye by accident. I would love to say it was the first time I had done something stupid whilst half asleep. A few years ago now I managed to grab my bottle of oramorph ( liquid morphine) , remove the child proof cap and drink from the bottle. Mistaking it for my bottle of water. As soon as I realised what I had done I ran to the bathroom and made myself sick which is difficult when you have a virtually non existent gag reflex. I then stayed up for the rest of the night to ensure I hadn't overdosed on it. It was really scary for a few hours. Ever since then I have ensured that my oramorph is kept in its box and out of grab reach for me whilst in bed. </span></p><p><span style="font-family: arial;">It amazes me how I can function half asleep and manage to get myself into so much mischief. </span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-37894925883174795172021-08-12T06:00:00.002+01:002021-08-12T06:00:00.192+01:00I'm back<p> <span style="font-family: arial;">I'm back after my two week sabbatical! I am so glad that I did take that time off as, things never ever go smoothly in the Myasthenia Kid household and this "holiday" was no different.</span></p><p><span style="font-family: arial;">The first two days of our holiday had been written off due to the fact we were having a new boiler installed and two radiators replaced. Everything was going swimmingly until the Tuesday morning when the plumber managed to go through the stud wall when hanging the bathroom radiator. It isn't the first time this has happened, when installing a toilet roll holder for me, my next door neighbour went straight through the stud wall. Yes our house is that poorly constructed and the shock of it is that this is apparently worth £224,000-£234,000 in today's market. How on earth is anyone supposed to get on the housing ladder these days? Anyway I digress. The contractors were fantastic, the plumber was straight onto his boss and by the evening I had been emailed with a very sincere apology and dates / times of when people would be around to sort out the damaged wall. This was all great but meant a further 3 extra early mornings for us as the boiler installation went over into another day, and three visits from the company's decorators to fix the damage, sand the wall and then repaint.</span></p><p><span style="font-family: arial;">*** for those of a delicate disposition skip the next paragraph!**</span></p><p><span style="font-family: arial;">Hilariously on the second day of the boiler installation I came down with a stomach bug and not the throwing up kind. As I was sat on the sofa in the lounge I could start to hear every part of my intestines sloshing around and lots of gas also building up. Due to the stud walls in our house and it being a two up two down I didn't wish to share my experience of the stomach bug with the contractor, so I spent from 2pm until 5.30pm with my arse cheeks firmly clenched hoping that there were no suddenly loud noises. I had to time letting rip with the guy using the drill so that he couldn't hear me because the wind was so loud, honestly I could have filled a few helium balloons. Obviously as time ticked on it became more and more dangerous to break wind. Which led to the worse issue of my stomach just expanding due to the sheer amount of gas trapped. By the time the guy left after 5.30pm ,I raced up the stairs and over the course of the next several hours every thing I had ever eaten since 1973 proceeded to exit my body in liquid form.😂😂😂😂😂😂😂</span></p><p><span style="font-family: arial;">** it's safe now **</span></p><p><span style="font-family: arial;">Anyway I was fine the next day, thank goodness as we had the plumber back to commission the boiler and a decorator to do the first part of the repair. By Thursday I was on my knee's with tiredness as I really don't cope with early morning starts. I can get up early but having to get showered and dressed by 08.30am is really hard because there is no time available for resting.</span></p><p><span style="font-family: arial;">I had been sleeping really well for a change and hadn't had to get up in the night and change my pillows to stop a headache . However for some reason on Thursday evening the neck pain I have been experiencing since 11th August 2020 ( RTC ) came back. I had a break of about a week and then on the 29th July the headaches and neck pain came back so severely I haven't known what to do with myself. I am sat writing this with a neck brace on because my neck is just so painful and I am again experiencing headaches day and night. Some of them build up slowly over the course of a day and then become full blown migraines. I seem to be on a permanent diet of sumatriptan at least once a day at the moment. I have no idea why it has kicked off even worse than it has been in a while. It has pissed me off today as I had planned to get some bits and pieces done and due to my head and neck being so sore I can't and that fucks me off when I am feeling ok(ish) with all the other health shit going on.</span></p><p><span style="font-family: arial;">We did have a lovely two weeks together, even if we ended up with 5 days of contractors coming in. Mr Myasthenia Kid had to go down to his mum's for two days of our holiday and help her with various things. I really feel for him having lost his dad 19 weeks ago he had to face the fact his mum is terminally ill. He feels awful for being an hour away but he also has me and Dembe to care for whilst working full time. It can't be easy for him. He feels like he is never with his mum enough and no one should ever feel like that. I don't think his father's passing has hit him properly, I am fully expecting him to come down with a huge bump when the American Football season starts as this was the thing that he and his dad could talk about for hours. Although there are people at work that he can chat to about the football, it isn't the same as chatting to your dad about your favourite team - they are Washington Fans. </span></p><p><span style="font-family: arial;">So I do the best I can keeping things on an even keel at home, managing my health to keep it stable. Try to support him when he lets me in and tells me what is going on in his head. It is hard but at least he has started telling me the days that he is struggling.</span></p><p><span style="font-family: arial;">Dembe adored having his dad home for two weeks. The first week Mr Myasthenia Kid was home I barely got a look in. It was the Dembe and daddy show. His little boy followed him everywhere. On the second week Dembe suddenly realised I was still here and then shared his cuddles out equally. To be honest I never mind about the Dembe and daddy Love In, as I know I get Dembe to myself for 5 days a week around 9 hours a day most weeks of the year. I love the fact that when Jay is home Dembe has to show him how much he loves him.</span></p><p><span style="font-family: arial;">Dembe also enjoyed barking at all the contractors we had here as well! It was only on the third day that he stopped barking at the plumber. On the day when the wall was repainted we got him a Venison leg to chew on. He absolutely adored that and it kept him busy for a good 90 minutes allowing the decorator to come and go without being barked at.</span></p><p><span style="font-family: arial;">The two week's went by so quickly, Dembe and I are now getting ourselves back into a routine again. Thankfully we have both slipped back into our usual work day routines nice and easily.</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-N8hGoP9r-lM/YRKNJnCHirI/AAAAAAABeSI/3BaF_00DmI0srNmiimVvTYPZCAT9AJvCgCLcBGAsYHQ/s2048/20210731_1Sat.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: arial;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-N8hGoP9r-lM/YRKNJnCHirI/AAAAAAABeSI/3BaF_00DmI0srNmiimVvTYPZCAT9AJvCgCLcBGAsYHQ/s320/20210731_1Sat.jpg" width="240" /></span></a></div><span style="font-family: arial;"><br /></span><p><span style="font-family: arial;">I forgot to say on the first weekend of Mr Myasthenia Kids holiday we attended a wedding reception in the evening. Dembe went in his Tuxedo and was the belle of the ball! Even the official wedding photographer took his photograph.</span></p><p><span style="font-family: arial;">To attend the wedding reception we had to do Lateral Flow tests for Covid. Up until then Jay and I had managed to not have to be tested for Covid. Jay was a bloody nightmare, he is useless with stuff like this. I dread anything where he may need eye drops etc as he can't relax and allow you to do it. He scrunches up his eyes and then tells me he isn't scrunching up his eyes. So I knew the covid tests were going to be a barrel of laughs. Our Lateral Flow tests needed us to swab our tonsils 4 times each and then using the same swab, go up our nose and almost tickle our brains with the end of the swab. I did mine myself no issue. I have virtually no gag reflex, nothing happens when something hits the back of my throat. I can't even make myself sick. I knew Jay would be the complete opposite.</span></p><p><span style="font-family: arial;">I ended up having to get a teaspoon from the cutlery drawer to hold his tongue down as every time I swabbed his tonsils he gagged and his tongue hit the swab. When I did up his nose with the swab he couldn't stop laughing and then he sneezed around 4 times. Poor sod as the first test he did came back as null and void so I had to repeat the process for him. We were both negative.</span></p><p><span style="font-family: arial;">When Jay was walking Dembe around the block later that day our neighbour asked him if his test result was negative. Thanks to the open patio door in the kitchen as I had done the swabs our neighbours had been entertained by me telling Jay to pull himself together and allow me to swab his tonsils. Only in our house!😂😂😂😂😂😂😂😂</span></p><p><span style="font-family: arial;">So as you can see it has been a fun packed two weeks. We enjoyed the wedding reception and got to catch up with a few people I haven't seen since I left work, so that's 13 years. We only stayed 2 hours as I was struggling with pain and temperature control. But it was worth it to just see everyone's reaction to Dembe who was treated like a Prince and brought his own water bowl by the staff who worked there.</span></p><p><span style="font-family: arial;">It did seem strange not to be blogging or thinking up blog posts whilst I took two weeks off.</span></p><p><span style="font-family: arial;"> I'm back!</span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-44387266894149078182021-07-22T06:00:00.001+01:002021-07-22T06:00:00.222+01:00HOT<p> <span style="font-family: arial;">Well b*gger me it is HOT here in the UK at the moment. Now I know the rest of the world laughs when anyone in the UK says it is hot but please remember heat is relative to what you are used to. Also because our Summers are traditionally not that hot, 24 degrees Celsius is probably about average. However this last week temperatures have been rarely lower than 28 to 30 degrees Celsius making it unbearable for me and for poor Dembe.</span></p><p><span style="font-family: arial;">In the UK we don't do air conditioning unless it is in a shop or a very fancy home. Air conditioning units are beyond a lot of peoples means at around £350-450 upwards. Our homes have been insulated to within an inch of their lives. Meaning they stay hot no matter what doors and windows are thrown open. Believe me I have tried the keeping the windows closed and curtains drawn during the day to keep the temperature down but it didn't work. It ended up even more suffocatingly hot than usual. We have the loft hatch open in the hope that it gives the hot air somewhere to go. But other than living in my refrigerator I am just soldiering on.</span></p><p><span style="font-family: arial;">The heat and Dysautonomia do not mix, I can't regulate my temperature on the best of days so dealing with this unrelenting heat is a nightmare. Standing up my vision is greying out, I have upped all the medications I can to try and retain fluids within my system but it still isn't enough. I am ending up wetting my hair multiple times a day to get my body temperature down and get some relief. I have got so fed up with it this week that I have bought some freezer blocks to keep me cool during the day. At night we are using hot water bottles that have been filled with cold water and frozen during the day. This at least is helping us sleep. Sadly though my sleep is being interrupted by heat induced migraines.</span></p><p><span style="font-family: arial;">I never used to suffer with migraines caused by the Summer heat until last year when I got an absolute shocker of a migraine on the Whitsun bankholiday ( a national holiday on the first Monday of June). It happened to be the first day that was very hot and I had spent a lot of time outdoors. I put it down to day drinking and being dehydrated. However the same thing happened this year and there had been no alcohol involved. I had been out in the sun a lot as it was the day Jay and his brother scattered their fathers ashes on Dartmoor, I had spent the time with his mum out in the garden. Again the migraine that followed was another shocker.</span></p><p><span style="font-family: arial;">It is so frustrating when you get a migraine due to the weather as stopping it happening is out of your control. I have now ordered some freezer blocks from Amazon to freeze and then use during the day to keep cool. Every night for the last three days I have ended up going to bed with a migraine either brewing or in full swing. Last nights was particularly bad as it came back again at around 3am. I woke up to a world of pain as my whole face felt like it was being smacked with a shovel. Thankfully it did ease off with the help of sumatriptan which has been a game changer with my migraines and it makes me angry that despite me visiting the gp practice on numerous occasions this wasn't offered to me until 2020 when my migraines were making me lose 48 hours of my memory. Which was incredibly scary.</span></p><p><span style="font-family: arial;">Dembe has also been suffering with this heat, we have had to cancel his Wednesday afternoon walk this week that he adores with Sophie, Beth and the gang as it is just too dangerous to walk him as it would be risking heatstroke. Sophie did offer to walk him in the morning but as Jay is home and he would walk him at 5am there was no point. During the day because Dembe simply refuses to use the garden to go to the toilet, even a wee (!) Jay has been taking him to the shaded lane that runs near our house. Dembe gets hosed down before and after and Jay always checks the temperature of the tarmac before walking him to ensure he doesn't burn his feet. I am glad he is that much older as he is less fizzy and will sleep during this heat.</span></p><p><span style="font-family: arial;">To help him with the heat we bought him a splash mat, I think Jay enjoyed it more as Dembe seemed deeply suspicious of it, only going on it when the jets were off.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-2hj3IiyCaHo/YPgGzRT5MlI/AAAAAAABcy0/oQyQgIXVr3MIvMT5azbc15cUZF0XDO1xACPcBGAsYHg/s4128/20210720_132227.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4128" data-original-width="3096" height="356" src="https://1.bp.blogspot.com/-2hj3IiyCaHo/YPgGzRT5MlI/AAAAAAABcy0/oQyQgIXVr3MIvMT5azbc15cUZF0XDO1xACPcBGAsYHg/w339-h356/20210720_132227.jpg" width="339" /></a></div><br /><span style="font-family: arial;"><br /></span><p></p><p><span style="font-family: arial;">He really enjoyed splashing around in the water that had collected in the pool. I am happy as long as he is enjoying himself and staying cool. He also likes lying down in the shade on the flag stones on the patio.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-UctzC6cRotU/YPgHeqE9nnI/AAAAAAABcy8/4o34Aa-QctsYVAumVlDCCR6RhlGPE0l4wCPcBGAsYHg/s4128/20210719_133646.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4128" data-original-width="3096" height="320" src="https://1.bp.blogspot.com/-UctzC6cRotU/YPgHeqE9nnI/AAAAAAABcy8/4o34Aa-QctsYVAumVlDCCR6RhlGPE0l4wCPcBGAsYHg/s320/20210719_133646.jpg" /></a></div><br /><span style="font-family: arial;">We hose this down regularly to ensure it is lovely and cool for him.</span><p></p><p><span style="font-family: arial;">We may get a slight reprieve over the next few days as we have been forecast heavy thundery showers. I really hope so as we do need a short break ( at least ) from the onslaught of the heat.</span></p><p><span style="font-family: arial;">**</span></p><p><span style="font-family: arial;">There will be no blog post over the next two weeks as Mr Myasthenia Kid is on leave from work and we are planning on spending the time together whilst there are some contractors here doing some work on our house.</span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-72585134973284995012021-07-15T06:00:00.001+01:002021-07-15T06:00:00.204+01:00Anxiety<p> <span style="font-family: arial;">After last week's post was written and scheduled to publish, initially I felt ok. I was proud of the fact that finally felt strong enough to speak my truth and no longer feel like I was blogging with one hand tied behind my back. As the hours ticked by towards publication I started to get worried about the post. I edited it numerous times, to ensure that I was comfortable enough to let it be published. I knew that at some point the anxiety would really kick in I just wasn't expecting it at at 4am the day of publication.</span></p><p><span style="font-family: arial;">I was reasonably comfortable on Wednesday evening when I turned in for the night. I was slightly anxious but kept trying to rationalise that this was a normal programmed response that over time I would unlearn. It is amazing how narcissists control you with fear of the explosion of their rage or perhaps the threat of the silent treatment. This is a cycle I have lived through my whole life. It gives you massive insecurities that love and support will be removed from you without notice, for breaking their rules, the ones you didn't even know existed. </span></p><p><span style="font-family: arial;">I was a little surprised at how calm I was on Wednesday evening, it was too calm. But I thought well maybe I have had enough time away from that circus, to know that I wasn't so under it's control. How wrong I was. I woke up at 4am on Thursday morning in a cold sweat paralysed with fear. I lay in bed listening to my husband getting ready for work, with my mind going back and forth between whether or not to get up and stop the post being published. I decided to ride it out that I could no longer give into the fear of upsetting or angering people, who play no role in my life, who have done nothing but harm me when I was involved with them. </span></p><p><span style="font-family: arial;">It was really bloody hard because the physical feelings of anxiety are not easy to ignore. Why should I be frightened of telling the truth? Surely I should be free at 47 to speak out about part of my life that has controlled so much of of what I do and say. No one should be this frightened of their family. To be frightened of one's family isn't normal. I have rationalised it and explained it away long enough. I am not doing that any more.</span></p><p><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;">My physical feelings of anxiety are always the same, my stomach flips multiple times in a minute. I can feel light headed, I can hear my pulse in my ears and usually I will want to have the shits! Probably TMI. I managed to talk myself out of removing the post, I just thought let the chips fall where they may. By removing it I am continuing to let the control me. Given time the anxiety will reduce and I won't be triggered so easily. It was hard but I did manage to get back to sleep. </span></p><p><span style="font-family: arial;">When I woke up at 8am the first thing I did was check my emails, I was fully expecting there to be abusive comments waiting to be published. I have always ensured that comments on either blog site are not allowed to publish without my permission. This isn't because I am a control freak but due to the fact both my blog platforms are targets for spammers. I remove a huge amount of spam every week from both blogs . I was grateful to see that what I did have were messages of support and that I wasn't alone. It is sad that so many of us grow up in these toxic environments and are too terrified to speak out due to the control still exerted over us even as adults. </span></p><p><span style="font-family: arial;">In the past I have raised things with my family, that have upset me, where I was name called or treated badly and every time I was told "It wasn't meant like that" or " that isn't what was said" or "that didn't happen". Any criticism of parenting style was seen as an attack and it always took a great deal of courage to raise these issues. After a while I just gave up, you can't discuss things with people that won't accept what they did was wrong and life is too short for me to continue to keep trying and getting the same result.</span></p><p><span style="font-family: arial;">My experience of narcissists is that the older they get the worse they get. Their audience has dwindled because most people have worked out what they are and give them a wide berth. It is a huge red flag when people constantly tell you they have no friends, a) they like being the victim b) It is simply not possible to go through that many years of life and to have zero friends - unless you are Attila the Hun or Hitler maybe but even Donald Trump has friends. As a narcissist ages the masks slips, you have been so long in their orbit that they don't even bother trying to hide who they are anymore. The thought of having to put up with their behaviour until the dying day ( regardless of the inheritance involved ) filled me with horror. There simply wasn't any reward on heaven or earth enough for me to continue to be this family's whipping boy.</span></p><p><span style="font-family: arial;">The anxiety has died down, I am ok with what was published I still stand by it. If they don't like it that simply isn't my problem anymore. There are a lot of things that have taken place in the last 47 years that I am not happy about but I have still found happiness and love with Mr Myasthenia Kid. I wish them all a long happy life together because truly that is what they all deserve</span></p><p><span style="font-family: arial;"><br /></span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-50809781798623931322021-07-08T06:00:00.135+01:002021-07-08T06:00:00.230+01:00Charades<p><span style="font-family: arial;">At some point in your life you decide that no matter what you do, for some people it will never be enough. That you come so far down their list of priorities that you have to look yourself in the eye and say I am worth so much more than an after thought. It hurts to know that you mean nothing to them but to stay would allow them to inflict yet more damage upon you.</span></p><p><span style="font-family: arial;">I have always tried to be honest in what I write about but since I started this blog I have felt like I have always had to write it with one aspect of my life never commented on. I am an honest person, I have shared stuff on my blog that I would have struggled to share in a real conversation. By holding back I haven't been honest, I can't do it any longer. I am not prepared to do it any more. Pretending that I have a supportive loving family is over. It has been for years but I have been scared into silence by them. I'm done being scared. I'm done being silent whilst they spend their days telling lies about me to all who are stupid enough to listen.</span></p><p><span style="font-family: arial;">I have left friendships due to being treated badly, people grow apart or something happens and their mask has slips and you decide enough is enough. I never ever thought that I would have to close the door on my family. It wasn't something that I ever wanted to do. Dysfunctional as they are, I love them but I can no longer have them in my life. For years I have been shamed into secrecy and silence. Playing a game of charades, pretending that we were the perfect family, when we were anything but. The decision has been about 5 years in the making, as I gained the strength and knowledge to know that this had never ever been about me but about about three terribly damaged individuals who were incapable of change because they couldn't see what they were doing was wrong.</span></p><p><span style="font-family: arial;">I am not here to drag it all into the light, there is so much that I would like to say that I could write a book not a blog post. I am past caring about your reaction to this blog post because nothing you could do to me now, would be worse than what I have suffered at your hands for the past 47 years. I am sad that I wasn't enough for you, that you felt I only warranted "good" treatment when I was doing things for you. Well don't worry your pretty little heads, the door is firmly shut and I won't be opening it ever again.</span></p><p><span style="font-family: arial;">There wasn't one thing or action that determined this turn of events, as I say the decision had been 5 years in the making. My eyes were well and truly opened in 2015 in the way that you ran to my siblings defence and cast me as the bad guy as per usual, without even speaking to me. The way you treated me, really broke my heart, I was so upset I couldn't eat or sleep, I was distraught. You shattered the illusion of the perfect family so you only have yourselves to blame now that I call time on it.</span></p><p><span style="font-family: arial;">It was my doctor that told me that my sibling was using her children as weapons and that it was wrong. In fact it was my gp that opened my eyes to the fact that our family relationships were dysfunctional and that there was an element of coercive control / narcissism to it. Whilst I was there at the appointment begging for anxiety medication and sleeping tablets because your combined actions had destroyed me yet again. Even at my lowest sobbing in the doctor's office I was still prepared to do anything to get my family back because I loved you.</span></p><p><span style="font-family: arial;">The price of getting you back was for me to apologise for <i><u>everything</u></i> I had done. I asked for clarification on what this "everything" was because I was clueless. I was treated like I was being the unreasonable and should just apologise for everything. I was told that unless I apologised for everything that none of you would have anything to do with me. Asking someone to apologise for "everything" as you put it but without quantifying what everything is, is a fucking mind game. It was all about control and ensuring I didn't step out of line. </span></p><p><span style="font-family: arial;">I was so desperate to keep you in my life because I really didn't understand where all this cruelty and anger was coming from. I still believed at this point that our family was perfect and that I had obviously done something terrible to warrant your treatment of me. Ever the scapegoat and peacemaker, I apologised for everything whilst my estranged sibling hurled accusations at me going back as far childhood, all of which were untrue or she had twisted the context to ensure yet again she was the victim. I apologised for things that I knew I hadn't done or had no control of, such was your combined twisted hold over me. How you three behaved then is what broke the spell. I started to realise at long last that our perfect family didn't exist and never had it was an illusion.</span></p><p><span style="font-family: arial;">So I went on a 5 year journey trying initially to discover what was so wrong with me that my sister could walk out of my life without a backwards glance and my parents could side with her without even speaking to me. Was I really so bad, so evil that I deserved to be treated like this? I asked my friends did they know this person that had been described to me as a compulsive liar and thief. None of them knew this person or recognised it as me. </span></p><p><span style="font-family: arial;">As my eyes opened to the years of abuse I began to ask questions, why did my parents always seem to love me less than her? Why was I the last person to be considered constantly? For two people who claim they were treated so badly growing up, as the youngest child was favoured by your parents, you really do miss the fucking irony of repeating exactly the same pattern don't you? I read websites, blogs, mountains of books all on the subject of narcissism. Once I scratched the surface of your behaviour it became crystal fucking clear that the issue wasn't me, it was all of you and your twisted fucking minds.</span></p><p><span style="font-family: arial;">Before anyone claims that it takes two to tango, I am not saying I am a perfect human being. I have flaws as everyone does. But their is a huge difference between flaws and taking positive enjoyment out of causing your own child mental anguish and harm.</span></p><p><span style="font-family: arial;">Initially I truly believed that the issue was my sibling's alone and now that we were estranged perhaps my relationship with my parents would improve? Unluckily for you, all that research had shown me how narcissists abuse their victims and how they always go through a cycle of love bombing and then when they feel the target has fallen for their lies hook, line and sinker they withdraw or have you walking on eggshells again never knowing when you might take offence or withdraw from me for weeks on end. I soon realised that the narcissism gene wasn't carried by my estranged sibling alone. It could be applied to the pair of you. It was like you were following the narcissists manual, it was so predictable it would have been laughable had your actions not been as psychologically damaging as they were.</span></p><p><span style="font-family: arial;">For a long time I tried to excuse the way that you behaved. I became a world expert at practising cognitive dissonance but my body / unconscious mind kept sending me more and more warning signals when I was dealing with the both of you. I would get anxious and panicky at the thought of having to speak to you or see you. Covid lockdowns in 2020 were a positive blessing as it helped me realise that closing the door on that chapter of my life was not going to be some huge deal because as you had already humiliated me, hurt me, attempted to break up my marriage, ignored me, destroyed my friendships and just so much more, there really wasn't anything left in your arsenal to hit me with.</span></p><p><span style="font-family: arial;"> My dear friends I warn you now, to be prepared for the smear campaign to start after this blog post if it hasn't already. No doubt they are claiming that I am mentally ill / having a breakdown - that's the usual line or that Mr Myasthenia Kid has brain washed me against them and is controlling everything I do. For the record yes I suffer with anxiety and depression on and off. Mr Myasthenia Kid is too busy looking after me and Dembe whilst holding down a full time job to be bothered to brain wash me or control me. The problem is your lies about Mr Myasthenia Kid tend to fall apart under close scrutiny, if I was really the victim of his coercive control you've had ample opportunity to <u><i>"rescue" </i></u>me. Yet you don't you sit around bleating to anyone who listens and paint yourselves to be the victims in all of this.</span></p><p><span style="font-family: arial;">Suddenly the slow drip, drip effect of your behaviour became a Tsunami, there was no holding back from seeing straight through it. Since stepping away from all the bullshit and continuous hurt I have never been happier. Despite everything you have put us both through, the lies you have told about us to anyone will listen. I am sad, that I don't miss you. A child should miss their parents presence but I don't. There isn't anything to miss, I don't miss being the very last thing you think of, I don't miss parenting you and I don't miss your shrieking phone calls when I stand up for myself. I thought there would be a grieving period but there wasn't. There is anger, anger that you tried to hijack my husbands grief and push your agenda on us. Stupidly if you had rung up and apologised for that, we would still be in contact because despite all the shit you have pulled over the years, all I ever wanted was to be loved by you and to know that I was enough. I still do love you but I love myself enough to know that having you in my life does me great harm, so I am walking away.</span></p><p><span style="font-family: arial;">Thankfully after having had 3 months out of your circus I know I am enough, that without you I won't shatter and break. That my life will continue on happier safe in the knowledge that I no longer have to walk on eggshells when dealing with you. I will no longer lie awake at night wondering what it is I have done to upset you this time. My exit from your lives, on my own terms and I won't be keeping quiet. If someone asks I will tell them. If you don't like that, I no longer care.</span></p><p><span style="font-family: arial;">I have never felt like a victim, I am a survivor, no longer the scapegoat and no longer playing your twisted game of charades.</span></p><p><br /></p><p><br /></p><p><br /></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-68257713653247507802021-07-01T06:00:00.001+01:002021-07-01T06:00:00.236+01:00Migraines, Occipital Neuralgia Flare up<p><span style="font-family: arial;">Well I know for a fact I am not alone in this as everywhere on social media people are complaining about the barometric pressure causing more frequent migraines. I have more in the last week than I have had for ages, add in a flare up of Occipital neuralgia and I haven't been a very happy bunny all the last week.</span></p><p><span style="font-family: arial;">The weather although not exceptionally hot is very humid and close. A few times we have had an amber weather alert for </span> <span style="font-family: arial;">thunder storms but sadly no light show. I love a good thunder storm especially now I have a dog(s) that doesn't get hysterical when there is a good storm raging around us. The most Dembe does is bark at the noise and then he settles back down to sleep again. As much as I loved Mollie, Willow and Frankie sleepless nights due to storms or fireworks were exhausting. Having a dog that will sleep through them is wonderful.</span></p><p><span style="font-family: arial;">At the end of last week I was in agony, my neck, scalp and forehead were all spasming due to the occipital neuralgia making it incredibly sore to move my neck to the left. It also triggered several migraines and made sleeping very painful as the back of my head was so sore. In desperation I contacted the doctors and begged for a small amount of Diazepam to relieve the spasms. When it has got to the stage that my forehead is constantly sore and I can't turn my head then the only thing that will work is Diazepam. I need to take it a couple of times over two days for the spasms to stop. In the past I have tried alcohol and additional pain relief ( not the two combined obviously) to get the muscles to relax along with heat, using hot water bottles and heat mats. </span></p><p><span style="font-family: arial;">Thankfully I did get a small amount of Diazepam and within two days I had moved out of the awful pain cycle I had been in and I can now move my head to the left without shrieking which is always a bonus. </span></p><p><span style="font-family: arial;">When I have weeks like this it is always exhausting, pain at that level just wipes out all my energy. I find it incredibly hard to concentrate and I lack any motivation to get anything done. The pain that I am in stems back to the car accident I had almost a year ago now. I have been left with an ulnar nerve entrapment, a flare up of migraines, occipital neuralgia, pins and needles in my left buttock and down my left leg. I also have pins and needles to varying degrees down my left arm and into my ring finger. The stress of the accident and the fall out from that has also kicked off the spasms in my feet, which I am still waiting to see the neurologist about. I was offered an appointment the same day as my father in laws funeral, obviously I couldn't attend. My gp has now chased this up and it looks like the end of August at the earliest.</span></p><p><span style="font-family: arial;">Thankfully the occipital neuralgia has settled an awful lot back to its usual level and not the searing pain I had last week. When I get to the point where I was last week I end up getting very tearful with the frustration at the situation.</span></p><p><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;">My mind is all over the place as I have just learned a childhood friend of mine who lives in The Netherlands has been seriously ill with Covid. He has been in a medically induced coma for 4.5 weeks a further 2 weeks in intensive care and is now having to re-learn everything. Kris is a fit and healthy 50 year old man who has no underlying conditions and it did this to him. And yet people still don't believe Covid is real. Get well soon Kris.</span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-10335674144479663112021-06-24T06:00:00.002+01:002021-06-24T06:00:00.200+01:00Campaign update - Success <p><span style="font-family: arial;">As I wrote last week's blog Success, I was aware of another success that I had obtained which was keeping the General Medicine and Autonomic Clinic at Derriford Hospital Plymouth open for at least another year and managing to keep Dr Fulton on n his position to run it. Obviously the success is not mine alone, many people were necessary to get us to this place, the members of the campaign group who were willing for their stories to be shared in print and on the television. Members writing to their MP's ( members of Parliament ) to force action, plus a widespread email campaign to many people involved in all aspects of healthcare.</span></p><p><span style="font-family: arial;">As part of the campaign one member managed to get Baroness Blackwood to raise a question in The House of Lords ( Parliaments upper chamber ). The Baroness also suffer's from EDS and PoTS so knows how important it is for sufferers to have access to proper healthcare and the provision of clinics in the UK is woefully inadequate especially in the devolved nations, Wales, Scotland and Northern Ireland. This was an incredible achievement in itself to raise the campaign profile and get it mentioned for prosperity in Hansard ( the document that records all questions and answers in both houses).</span></p><p><span style="font-family: arial;">We had some excellent coverage in Plymouths newspaper and their online presence. We had two journalists join the group, whilst the BBC's coverage was poor with incorrect figures being presented as fact, they claimed a mere 200 patients would be without care when the actual figure for those in Derrifords catchment area was 1000-1500 and that was without all those who were dropped from Dr Fulton's list in June 2020 who were not in the hospitals catchment area and have been left without a consultant. You can read first article <a href="https://www.plymouthherald.co.uk/news/plymouth-news/woman-rare-disorder-petrified-specialist-5380542?fbclid=IwAR2MR4-HtItwfR3zUYTeAwixDbKZlzRShA9evq6fiL1szpVt1Se5cJ3u6h8" target="_blank">here.</a> The second article when we knew the clinic had been saved for at least 12 months and Dr Fulton is taking a much needed break of two months, can be read <a href="https://www.plymouthherald.co.uk/news/plymouth-news/specialist-clinic-derriford-hospital-temporarily-5535047?fbclid=IwAR0kKLd355nBwCQh4Msj7gURhj6h_1clfsuB7EYPSJ1EAsP_q3NP8kw3EGQ" target="_blank">here.</a> The journalist Molly has been incredibly supportive of our campaign and has produced two excellent pieces that have held Derriford Hospital to account. Thank you to Rebecca for sharing her story and explaining why Dr Fulton is so important.</span></p><p><span style="font-family: arial;">I am amazed that we have achieved all we have in the short space of time since the 26th March when I asked the question at the hospital trusts board meeting, to starting the group and producing a letter to be sent out to various different groups and people to publicise our campaign. Thanks to Carol who managed to wrangle my 6 page goodness knows how many words into a succinct 3 page punchy letter that was hard to ignore. It is a real shame despite contacting my own MP by post, by recorded delivery and by multiple emails he failed to respond or provide any help at all to our campaign. Yet there were Plymouth and surrounding area MP's who were more than happy to roll up their sleeves and fight for their constituents and this wasn't just based on political parties, we got cross party support. Which shows how effective a campaign can be if you can get people in power interested in it.</span></p><p><span style="font-family: arial;">Sadly I am aware that as Dr Fulton is on a fixed term contract and this next year marks one commissioning cycle we may still very well be in the same position next year especially if long Covid sufferers have been forgotten. People with Long Covid seem to develop Dysautonomia more specifically PoTS. Having that to use as part of the campaign made it very relevant to the media and it also gave us the advantage with Derriford as closing the clinic would in effect mean they were withdrawing care from an emerging patient group.</span></p><p><span style="font-family: arial;">The group will be staying on Facebook as long as it is needed, plus now it has turned into quite an effective local group for PoTS patients, which is another thing to be proud of.</span></p><p><span style="font-family: arial;">At the moment I am still left without a hospital consultant, there is no one based at the largest hospital near me and Dr Fulton was my consultant until June 2020. He is hopeful that he will be able to treat patients who are out of area at some point in the future and I am keeping everything crossed for that. The main aim of the campaign has been achieved for the moment.</span></p><p><span style="font-family: arial;">I can't lie it has been pretty exhausting organising a campaign in the midst of a significant bereavement for my husband and his family. There have been days when it has felt like my world was imploding, where I was so exhausted that I couldn't continue and then I would get a message out of the blue from a member of the campaign group thanking me for everything I had done and that gave me the strength to continue. I am happy we have got as far as we have in the space of a few months and that I now don't have to be continually thinking about our next move as a campaign.</span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-71832551838223175762021-06-17T06:00:00.005+01:002021-06-17T11:23:55.985+01:00Success<p> <span style="font-family: arial;">Sometimes it is the little things in life that make you smile the most. This morning (Tuesday 15th June 2021) I replaced my Chromebooks battery....myself! I am not an engineer, I have no technical training at all. I have never removed any covers off a computer / laptop / Chromebook previously. Until today I had never seen inside my Chromebook. The first thing I noticed when I got the cover off was that Dembe's hair ( my dog ) had managed to get inside it😂😂😂</span></p><p><span style="font-family: arial;">Around a month ago I noticed that my Chromebook charging light was failing to turn green and the battery wasn't charging past 80%. Having had a look on Google I realised my battery was knackered ( or f**ked as we say in technical circles) . I looked at the price of batteries and saw that they were retailing for around £70 which being tight I didn't want to spend. I could only use my laptop for about 10 minutes without having to put the charger on. Then on Sunday I couldn't switch it on at all. The screen and keyboard would light out and then go black. I knew that this was more than likely the battery - having nursed it for the last month. Having saved a video on YouTube I had another look at it to convince myself I could do this and then started looking for a replacement battery.</span></p><p><span style="font-family: arial;">For some reason this time I looked on Amazon, I don't know why I didn't before. I found a battery for £39.99. Considerably cheaper than the sites I had looked at previously and with the added bonus of being here the next day. Once ordered I allowed my Chromebook to run out of charge ready for replacing the battery hopefully on Monday but possibly Tuesday depending on the time of it's arrival. Sadly it arrived late on Monday ( late for me is after 4pm and I wont have the mental capacity to be able to deal with something technical ). So the battery replacement would have to wait until Tuesday.</span></p><p><span style="font-family: arial;">I have a small screwdriver gizmo that has multiple ( around 50 ) different heads that you can attach. So I had the right head to undo the tiny screws on the back of the Chromebook. Having watched the YouTube video I also knew that there would be two screws under the foot rests at the back of the Chromebook base. With everything out the back of the Chromebook came off easily. For safety I pressed the power button on the Chromebook down for over a minute to discharge any electricity static or otherwise from the Chromebook so I didn't get a shock when messing about with the battery. I got a shock from the mains here a few years ago when I accidentally touched the metal pin as I was taking a plug out of the socket and got blown clean across my lounge so I really didn't want to repeat that experience!</span></p><p><span style="font-family: arial;">Knowing that everything was now safe I took the 2 screws out that hold the battery inside the Chromebook cavity. Then gently I took the clip that attaches the battery to the mother board off. Helpfully it does say battery above it. The only thing that could go wrong is forcing something and breaking it. So I moved slowly and carefully. The battery clip took a bit of gentle persuasion to remove but it came off in the end.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-QOTwdnTwyE0/YMidp-zYX7I/AAAAAAABazo/mz3NsvtBCfs_hGQD1W2mntIJgxbtna_4wCLcBGAsYHQ/s2048/chromebookbattery.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="337" src="https://1.bp.blogspot.com/-QOTwdnTwyE0/YMidp-zYX7I/AAAAAAABazo/mz3NsvtBCfs_hGQD1W2mntIJgxbtna_4wCLcBGAsYHQ/w268-h337/chromebookbattery.jpg" width="268" /></a></div><br /><span style="font-family: arial;"><br /></span><p></p><p><span style="font-family: arial;">The first attempt when I thought I had clipped the battery in, was proved incorrect when I plugged the Chromebook Charger in and the orange light on the side of the Chromebook kept flashing. When I ran Crosh it told me no battery could be detected however despite letting me know I had incorrectly installed the battery it also told me I was correct in my assumption that the issue was battery related as if my machine was working just on the charger there was no other issue with it than the power source. </span></p><p><span style="font-family: arial;">The back was taken off again, following the same routine to ensure there was no static electricity left in it before handling the battery again. The clip does have a knack to it and once it is clipped in properly ( the clip is circled )</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-bgL5xpBfqOc/YMigDoazeaI/AAAAAAABa0Q/YP-SPDFMxXgWMe6rUA1k2V_47r4k75LGwCLcBGAsYHQ/s933/chromebookbattery%2Bclip.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="933" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-bgL5xpBfqOc/YMigDoazeaI/AAAAAAABa0Q/YP-SPDFMxXgWMe6rUA1k2V_47r4k75LGwCLcBGAsYHQ/s320/chromebookbattery%2Bclip.jpg" /></a></div><br /><span style="font-family: arial;"><br /></span><p></p><p><span style="font-family: arial;">Once I got the clip in correctly it was quite obvious as it didn't fall off when putting the battery in place and was nice and secure. </span></p><p><span style="font-family: arial;">Before putting the housing back on I gave the inside of the Chromebook a quick brush ( clean brush used) , I did this VERY GENTLY to remove the Dembe hair and any dust that may have settled whilst the back was off.</span></p><p><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;">A few people have said I was brave / clever doing this, my main motivation was I wasn't prepared to pay someone else £100-£150 for a battery change when it was clear I had the tools here to do it and it wasn't a huge thing to do. The hardest thing was handling the tiny screws that hold the case together as my manual dexterity isn't the best. With the advent of YouTube, many jobs that were shrouded in mystery previously are now available for us to see on video and learn from. The number of times I use YouTube during the week is crazy, especially for sewing tips or looking how to fix something. Obviously some things are very technical or require specialist tools or need qualifications for those jobs to be safe. The little jobs though and the ones I feel ok about I will give them a go.</span></p><p><span style="font-family: arial;">The moral of the story is don't abuse your Chromebook battery. My Chromebook will be three years old in November and I have trashed the battery already. I did a stupid thing which was never shut it down properly when I finished using it. I would just close the lid. I killed the battery and at £40 a pop it isn't something I am going to repeat in a hurry. I will be turning this off religiously now.</span></p><p><span style="font-family: arial;">Another bonus of replacing the battery is that the touch pad ( which is what you use instead of a mouse) is now working a lot better. I had lost the left hand side of it. I think now that after dropping it ( I have lost count how many times I have dropped this ) the back screws have become loose which has meant the pressure behind the touch pad hasn't been there stopping it working correctly. My keyboard is also working better as well. So even if you don't want to take your Chromebook apart do regularly check the screws on the back are secure. I have lost one, when I don't know ( people have always said I have a screw loose), taking the back off and putting it back on has definitely corrected some issues I was having. That £40 battery has saved me at least £200 if I had to buy a new Chromebook.</span></p><p><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;">I am so proud of myself for changing the battery and solving the issue myself. My Chromebook is my lifeline. Having to rely on my phone the last 48 hours has been a nightmare.</span></p><p><span style="font-family: arial;">Just a little tongue in cheek humour as ever since I replaced the Chromebook Battery this is all my husband has been singing.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/md3B3I7Nmvw" width="320" youtube-src-id="md3B3I7Nmvw"></iframe></div><br /><span style="font-family: arial;"><br /></span><p></p><p><span style="font-family: arial;"><br /></span></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-6731197790649960702021-06-10T06:00:00.001+01:002021-06-10T06:00:00.222+01:00Holiday<p> <span style="font-family: arial;">As hubby is on a weeks holiday from work I shall just leave you with this video of Dembe having a swim on Woodbury Common this week. He loves having a swim. Jay takes videos as I can't be there to see him swimming.</span></p><p><span style="font-family: arial;"><br /></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/HW9ay_9zl8I" width="320" youtube-src-id="HW9ay_9zl8I"></iframe></div><br /><span style="font-family: arial;"><br /></span><p></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-63522095370670260452021-06-03T06:00:00.002+01:002021-06-03T06:00:00.207+01:00Whitsun Bank holiday<p><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><a href="https://1.bp.blogspot.com/-d0tqh5WO-yk/YLd_WCdWLPI/AAAAAAABZ-8/jiAgN6kSJ_MwgS3mxdGhmAPNfeZcr2cugCLcBGAsYHQ/s2048/20210530_152200.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://1.bp.blogspot.com/-d0tqh5WO-yk/YLd_WCdWLPI/AAAAAAABZ-8/jiAgN6kSJ_MwgS3mxdGhmAPNfeZcr2cugCLcBGAsYHQ/w260-h400/20210530_152200.jpg" width="260" /></a></span></div><p><span style="font-family: arial;"><span style="font-family: arial;"><br /></span></span></p><span style="font-family: arial;">Sorry this post is going to be a short one as I am just not feeling that great.</span><p></p><p><span style="font-family: arial;"><br />I don't know what it is about the first few days of meteorological summer</span> <span style="font-family: arial;">but I am always left feeling really rough for the first few weeks. You would think with the sunshine it would leave me with less joint pain and with my spirits lifted. But over the years I have found the opposite to be true.</span></p><p><span style="font-family: arial;">Thanks to Facebook memories I know for the last few years every bloody Whitsun bank holiday has resulted in me having an awful migraine. The common denominator in the last few years has been the weather, brilliant sunshine and the fact that I have spent the majority of the day in the sunshine. My Whitsun migraines are ones that even Sumatriptan struggle to shift and give me a searing pain in the centre of my forehead that makes sleep impossible and I am left feeling battered and bruised the following day.</span></p><p><span style="font-family: arial;">I am still exhausted from seeing family at the weekend and the mega migraine. So much so that I have barely done a thing since, other than get dressed. Today I am still out of sorts and I am freezing cold because due to the UK's wonderfully crazy weather we have gone from 23 degrees ( and more) yesterday to rain and temperatures hovering around 15 degrees. For someone like me who struggles to maintain their body temperature at the best of times, I was just getting used to the heat when I am back into a sweatshirt with my finger nails going blue from the cold ( and shitty peripheral perfusion due to PoTS / ANS dysfunction). </span></p><p><span style="font-family: arial;">I find any seasonal shift difficult to cope with at the best of times but this week has been a real shocker after needing fans on constantly to suddenly feeling like I could do with having the heating on or wearing several layers. Until we are in a regular weather pattern I will struggle adjusting to the heat or the sudden drops in temperature. Any swings in temperature upset my joints. So with the change in weather front coming in overnight from yesterday afternoon I was left feeling like my joints had been set on fire. It was just so uncomfortable and I really struggled getting comfortable. The joint pain only adds to the exhaustion because it is a constant battle with temperature regulation versus being able to use heat to ease my joint pain - which is the only thing that works and is not much fun during the summer months.</span></p><p><span style="font-family: arial;">I did have a lovely Sunday and despite being wrecked for the last few days it was worth the trip. Dembe certainly enjoyed himself, whenever he is happy I am happy!</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-348UvDreb5Q/YLeAk5DuvPI/AAAAAAABZ_E/1XnAbzNOmQ8Ol-d7Er2IhW3_euU09bGMACLcBGAsYHQ/s2048/20210530_152155.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-348UvDreb5Q/YLeAk5DuvPI/AAAAAAABZ_E/1XnAbzNOmQ8Ol-d7Er2IhW3_euU09bGMACLcBGAsYHQ/s320/20210530_152155.jpg" /></a></div><br /><span style="font-family: arial;"><br /></span><p></p><p></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/ssfmxa8uK5w" width="320" youtube-src-id="ssfmxa8uK5w"></iframe></div><br /><span style="font-family: arial;"><br /></span><p></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-90617912979955331072021-05-27T06:00:00.002+01:002021-05-27T06:00:00.219+01:00Master manipulators<span style="font-family: arial;"><span face="Verdana, sans-serif">When people think of manipulative relationships they often think about the victims of domestic violence and the coercive behaviour that can exist within them. However it isn't just domestic violence victims that can fall prey to this kind of behaviour. Many do not realise that these kind of relationships can exist within families, friendship groups or in the work place. Often it is not until the person has disentangled themselves from the manipulator that they realise the psychological abuse that they have been subjected to.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">When you are chronically sick it is all too easy to become the victim of a master manipulator. These are people that like to exert unprecedented control over your life under the guise that they care or are caring for you. Master manipulators can be family members, friends or carers and once in your life can be very difficult to get rid of.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">A few years ago I fell under the spell of a master manipulator. It's embarrassing to admit that I fell prey to this woman's evil schemes but now looking back I can see that I was particularly vulnerable. I had lost a lot of self confidence with no longer working, I was fighting the medical profession for a diagnosis and I was being treated badly by another friend who had become bored with my perpetual state of ill health. I had also been subjected to this kind of behaviour by other individuals in my life for a very long time .I was the perfect victim and she seemed initially like the perfect friend, too perfect. </span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">Manipulators play the long game, sometimes their plans are literally years in the making. Initially they seem absolutely perfect it is only over time that their agenda becomes clear, to dominate and use the person to achieve their own goals. At the start of the relationship the manipulator bides their time assessing their victims vulnerabilities. Storing every piece of information away to be used at a later date when they wish to start dominating the victim. They never expose their game plan in the beginning as obviously if a potential victim becomes suspicious of their motives the ruse would no longer be able to continue. This is the exact pattern of events that occurred with my friend Bertha* (* names changed to avoid legal action, not to protect the innocent).</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">Bertha came into my life like a breath of fresh air, I had known her in my previous life and had found her pleasant enough. It was quite a surprise when she messaged me out of the blue and said that she and a mutual friend would like to come and visit me. As social contact at this point was quite rare other than the two friends who had stuck by me, I was flattered that they would want to come over. My first mistake was made I was too grateful for her visit. The friend that accompanied her I never heard from again! I imagine that Bertha had realised that I was socially isolated and provided good victim material.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">Initially Bertha was like any other normal human being. She had my sole undivided attention as she wasn't working and would come over and see my several times a week. Slowly over time I began to notice small changes, where once helping me and hubby out on the odd occasion, mainly dog care so I could attend appointments, she started to arrive late so that I would only make the appointment by the skin of my teeth or arrive late. Once I asked her to take me to a medical appointment as without her help I wouldn't be able to attend. She seemed delighted to be asked, which to be honest at the time seemed a little odd due to the fact she had let us down at the last minute several times previously when we asked for her help. Her mood changed drastically when I told her I did not want her going into the consultation room. My health appointments are private, I needed to discuss some ongoing issues with my consultant safe in the knowledge I had complete confidentiality, as any patient would. </span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">On the drive to the hospital she went on and on at me trying to wear me down. She didn't mind coming in with me, she had driven me there surely she should get to come in? Why was I being so secretive did I have something to hide? We share everything why won't you share this with me? The 30 minute drive felt like a lifetime. When you don't allow a master manipulator the thing that they desire you are faced with a barrage of either abuse of emotional blackmail. Even whilst we sat in the waiting room she continued her assault. When she wheeled me into the consultation room she made a move to sit behind me. I was adamant however that she wasn't going to be privy to the conversation and politely asked her to "close the door on her way out." She let out a huge sigh and left the room.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">Having her drive me to the hospital and take me to the appointment was one of the weirdest things I have ever gone through. Looking back now I can see it was just a means of control, she felt her reward for doing me a good turn should be hearing confidential medical information pertaining to me. When she wasn't given her reward she subjected me to emotional blackmail. I was left feeling like a bad person for standing up to her, yet hers was the behaviour that was totally unacceptable. The drive home was mainly conducted in silence, the silence was only punctuated with her sighing. I kept my mouth shut and pretended to nod off. I wanted to use the excuse that I was tired and needed to have a lie down to prevent her demanding to come into the house for a cup of tea. Her behaviour that day had made me feel uncomfortable at the time I couldn't put my finger on it. If I thought that was strange things would eventually take a weirder turn.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">In time I noticed that things were very one sided on the conversation front. She would ask me a question and then proceed to turn the conversation back to her favourite subject, herself. I felt like I had become her counsellor and joked about it. I felt sorry for her that she seemed to have so many problems in her life. Many times she complained about the fact people she was friends with her suddenly dropped her with no explanation. If it had been one friend I could understand it but it wasn't over time it appeared to be every friend she ever made had suddenly dropped her and completely cut her out of their lives. </span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">A few years into our friendship I made a new friend. She came around every Thursday and stayed for a few hours. I enjoyed her company we had quite a few things in common. There was no pressure in this relationship it was natural and easy going. This new friendship highlighted the unease and dread I felt every time Bertha said she was coming around. Unless you suffer from an anxiety disorder the thought of a friend coming over to visit you should fill you with happiness. My feelings were the exact opposite. This was what I would come to realise a RED FLAG and I should have paid more attention to this and the many others in my life. Having panic attacks before people visit you or when their number flashes up on your phone isn't normal. If someone is inducing those kind of emotions then you need to get the hell away from them.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">Initially Bertha made out she was really happy for me to have a new friend. She started buying me small gifts to show me how much she appreciated our friendship. She decided that she was going to start hugging me more or sitting next to me, rather than how we usually sat sprawled out over the two sofas. As my new friendship flourished, Bertha started to become more critical. She was never critical of me directly but critical of my house, claiming things were broken when they weren't and then my dogs when she got no reaction from me regarding her other critical comments. Out of the blue she told me Frankie had bitten her hand. I asked her to show me where he had bitten her, it was important because as much as I love my dogs if they were ever to bite someone and injure them, they would have to be put to sleep. When she showed me her hand there was no mark on it. However her complaints of being bitten now happened every time she came to the house, yet no skin was broken, there were no teeth marks and no blood was spilled. It started to really irritate me but I let it go as I felt sorry for her. </span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">As her attempts to criticise me failed to provoke a response she tried a different approach. She had always been bad with time keeping and responding to text messages taking 12 hours to 3 weeks to answer a message. I really dislike lateness and people failing to respond to texts in a timely manner. Obviously there are times when you can't respond to a text message when you are working or driving for example. She had heard me complain about these bad habits previously so started to use this as her form of control. Now on a regular basis she would turn up 2 hours later than the arranged time of our meet up. She would not respond to texts blaming her phone signal. Initially I believed her over the phone signal but seeing how much she was on it I couldn't understand why she was taking up this technical fault with her service provider.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">About this time she was beginning to get caught out in her own lies. We had been friends for about 4 years and she clearly couldn't remember the lies she had told. When we first met she told me she was on the waiting list for two operations yet 4 years later she was still waiting. I know the NHS is slow but it isn't that slow. When I questioned her about it she claimed she had never been put on the waiting list. She had also lied about various medical conditions. When challenged she would claim that I was confused and that she had never said that. Her stories were beginning to unravel, I let her think that I believed this explanation and then started to deliberately ask her questions about other things she had told me over the course of the four years. I have to admit I got some sort of perverse enjoyment from it, probably because I felt I was playing her at her own game for the first time we were becoming equals.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">As her lies were starting to catch her out and she knew that I was beginning to realise that she wasn't the friend I had initially thought she was, she started a new attack. My husband has two days off per week and these are the days on which we spend time together. I keep these days clear of friends coming over as I want to spend the time with the man I married. All my friends respect this, obviously if there was some kind of emergency or it was the only day that they were free then I will spend time with them. However I feel it is important that my friendships are not to the detriment of my relationship with my husband. As Bertha knew this she started turning up on hubby's days off claiming that it was the only time she was free. If I said it wasn't convenient I was met with "I haven't seen you in ages", "I will just come over for an hour or so". I felt due to everything that she had done for me and the fact that she came to visit me when others didn't that I owed her and I never felt strong enough to give a flat out no. I have terrible problems saying no to anyone that I care about.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">My husband always tried to make himself scarce when Bertha came over. He didn't actually like her very much and she had started flirting with him. It made him uncomfortable and embarrassed for her. When it first started he had laughed it off politely and decided not to tell me. Unfortunately she wouldn't take no for an answer and her flirting lost its subtlety and became an all out attack. It was no longer taking place when I was out of the room but in front of me. At one point she stripped off down to her bra, when Mr Myasthenia Kid was in the room on the pretext she wanted to show me her new bra. As she was probably a size 30 (UK women's size at this point), it wasn't pretty. I have lots of female friends. I have never stripped off in front of any of them to show them a new bra.</span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">I knew that the friendship was coming to an end, Bertha had pushed me to my absolute limit. The thought of her visiting me made me anxious, she made my husband and I feel uncomfortable in our own home and she was persisting with the ridiculous lie that Frankie was biting her, in the full knowledge that his life was at stake when she said that. She was becoming dangerous and it had the feel of single white female about it. I talked it over with my other friends, who had already made it clear that they thought she was odd and possessive. My problem is I worry too much about hurting other people. It seems the older I get the more I worry. I never seem to take into account the hurt they have caused me and by continuing to have them in my life would cause me more pain. That is the master manipulators spell and I have fallen under it too many times.</span></span><div><span style="font-family: arial;"><br /></span></div><div><span style="font-family: arial;">The problem is having been exposed to these kinds of relationships from a young age I simply didn't realise that no matter who the person is in your life, you should never feel emotionally blackmailed by them, subjected to the silent treatment by them as punishment for not doing what they want you to do. You should never feel anxious at the prospect of dealing with them. You should never feel that because of who they are you should endure a relationship where you are an after thought and are quite often made the scapegoat when things go wrong in their lives. That's not love, not family or friendship operate.<br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">The opportunity arose to do the dirty and end the friendship. I had arranged for her to come over to the house at 13.30pm. As on numerous occasions she had arrived more than two hours late, I had text her at 11:30pm to check if she was still coming over, I wasn't very well and if she wasn't coming I would be going back to bed. This had no response, so I messaged her via social media at 12:30pm, again no response. The prearranged time for our meet up came and went. I eventually heard from her at 14:30pm via text telling me that she had just woken up and could she come over at 16:00. By this point I will admit I was seething but I was scared of her also. I kept my reply short and sweet and told her I was in bed and to forget about today. she immediately text me back all sweetness and light asking what was wrong. I told her that I was very disappointed in her and that I would message her in a couple of days when I had calmed down. </span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif">I had taken back control at long last but I was shaking with fear as I pressed send. I had no idea how she would react, whether she would try and plead her case or go nuclear. She went nuclear and sent me a stream of abusive texts telling me I was an ungrateful bitch after everything she had done for me and that is the one that I can repeat. The others called me all the names under the sun. When I was faced with all this vitriol it was only then I realised that she couldn't stand the loss of control. This was the first time I had ever stood up to her and she couldn't stand it. After the 5th or 6th text I decided to block her number from my phone and then immediately block her from all my social media accounts.</span></span></div><div><span style="font-family: arial;"><br /></span></div><div><span style="font-family: arial;">For about 48 hours my anxiety hit the roof, I felt like I had been a terrible person to cut her off like this but it couldn't go on. This all happened over 7 years ago and I have had to call time on other friendships, nothing as dramatic as this and the anxiety wasn't as bad when I realised I deserved better. </span></div><div><span style="font-family: arial;"><br /></span></div><div><span style="font-family: arial;">When you realise that friendship, family relationships, love are not something that operates on a transnational basis as in what you can do for them, you realise by walking away from them you lose nothing but the constant pain they cause you. You realise that normal people don't behave like this, they don't view others simply in terms as what they can do for them, they like people for being themselves. Only happiness can come from realising your worth.<br />
<span face="Verdana, sans-serif"><br /></span></span>
<span face="Verdana, sans-serif"><br /></span></div>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0tag:blogger.com,1999:blog-7121366373034963667.post-14354833210800891612021-05-20T06:00:00.001+01:002021-05-20T06:00:00.205+01:00May 2021<p><span style="font-family: arial;">This May has been a weird month and it is now slowly drawing to an end. It has been unseasonably cold and wet. Which for many people including those suffering with EDS it means our join pain is much worse. There has been a huge study conducted using an app called "cloudy with a chance of pain" and it has asked it's users to track their pain each day and say what the weather was like. They have proven that there is a link between the weather and peoples joint pain, be that through Arthritis, Ehlers Danlos Syndrome, Mixed Connective Tissue Disorders and many more.</span> <span style="font-family: arial;">Many of us could have told them this, without the need of an app. But hey at least we can't be laughed at when we say we know that the weather is going to change before it does. We are human barometers.</span></p><p><span style="font-family: arial;">There is a huge low pressure area that is moving over the UK tomorrow, currently it is sat out in the Atlantic Ocean but it's effects are already being felt by many of us. My daily exercise was painful from start to finish. It took a considerable amount of effort to keep going. My reward for keeping going is more joint pain not less. Today I have the rare symptom of sole of the foot pain, making it incredibly painful to walk. Even with them elevated the balls of my feet feel like they are throbbing along in time to the music I am listening to as I write my blog post. ( If you are interested Taylor Swift Evermore Album, I have that and Folklore set up back to back on my Amazon music account). </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-GRGAel3iwG8/YKT0dNKNVHI/AAAAAAABZNQ/GvtG3hH46zotBzLgoY_HUdSzRUbs-Q_2QCLcBGAsYHQ/s883/FB_IMG_1621423140102.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="883" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-GRGAel3iwG8/YKT0dNKNVHI/AAAAAAABZNQ/GvtG3hH46zotBzLgoY_HUdSzRUbs-Q_2QCLcBGAsYHQ/s320/FB_IMG_1621423140102.jpg" /></a></div><div style="text-align: center;">Photo credit UK Southwest Storm Chasers</div><span style="font-family: arial;"><div style="text-align: center;"><br /></div></span><p></p><p><span style="font-family: arial;">The yellow area is the part of the UK that is going to be affected by the low pressure that is moving in. As UK Southwest Storm Chasers say it is an "unusual deep area of low pressure that will sweep slowly across a swathe of the UK from Thursday night into Friday. We will also see some heavy rain and with this some high winds. This will start to affect South Wales and Southwest England first through late Thursday afternoon "</span></p><p><span style="font-family: arial;">So instead of feeling like I have the body of a 47 year old, I am left feeling like I have the body of an 80 year old torture victim whose feet have been repeatedly beaten with a piece of 2 by 4. I have put Ibuprofen gel on my feet that has menthol in it but I can't even feel the menthol which is bizarre. It would be easier to tell you what isn't hurting at the moment and that would be my face. That is the only area of my body that isn't hurting at all at the moment. Which is weird because I am sporting a lovely bruised eye lid at the morning.</span></p><p><span style="font-family: arial;">Late on Monday night I noticed that I had a dark purple line on my eye lid. Initially I thought it was ink or something on my eye lid. I had been suffering from really dry eyes all day which always makes them itchy so I had been rubbing them far more than I normally would. I didn't think any more of it until I woke up Tuesday morning and saw that the purple line was dissipating and the bright purple line was now more of a dark red and no longer had defined edges. Excuse the state of me in the photo I had only just got out of bed and was feeling pretty rough.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-Z1HYetZm1Yg/YKTzJMpUy9I/AAAAAAABZM8/RTCJnh3J13E1T1TRTzHzHrGzK_xmBRjUACLcBGAsYHQ/s2048/20210518_090621.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-Z1HYetZm1Yg/YKTzJMpUy9I/AAAAAAABZM8/RTCJnh3J13E1T1TRTzHzHrGzK_xmBRjUACLcBGAsYHQ/s320/20210518_090621.jpg" /></a></div><br /><span style="font-family: arial;"><br /></span><p></p><p><span style="font-family: arial;">It was a tiny bit sore but nothing major. By the end of the day it looked like this.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/--ituCvkwuK0/YKTzXvUpA5I/AAAAAAABZNA/5yw-kSD-Kgcey0B_0BrkidPCHOoauu5vQCLcBGAsYHQ/s1472/20210518_190836%257E2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1240" data-original-width="1472" src="https://1.bp.blogspot.com/--ituCvkwuK0/YKTzXvUpA5I/AAAAAAABZNA/5yw-kSD-Kgcey0B_0BrkidPCHOoauu5vQCLcBGAsYHQ/s320/20210518_190836%257E2.jpg" width="320" /></a></div><br /><span style="font-family: arial;"><br /></span><p></p><p><span style="font-family: arial;">The bruised area is tiny and it has perplexed me as to how on earth I have managed to damage a blood vessel just rubbing my eyes like I normally would. I have never had anything like it before. </span><span style="font-family: arial;">My eyes are still really dry at the moment and I am being extremely careful when I rub them just in case! I don't want a matching pair.</span></p><p><span style="font-family: arial;">I hate it when I have weather induced joint pain as there really is nothing at all I can do to lessen its impact. Pain relief doesn't work, keeping mobile doesn't do anything for the pain but it stops me seizing up. It is a case of dressing in layers and applying hot water bottles to those areas causing me the most issues. On days like today it would be lovely to have a body sized hot water bottle to take the worst of the pain away.</span></p><p><span style="font-family: arial;">Add in a surprise period from mother nature, I am truly on my way to the menopause with the last one I had being January. So I have the fatigue, stomach cramps, bum and leg ache on top of all the other shit that it going on. It is working it's way to being a perfect bloody week. No pun intended. Yesterday I could have quite happily spent the day in bed and slept all day, I haven't felt that tired and drained in a very long time. </span></p><p><span style="font-family: arial;">I took a self care day and watched stuff we had recorded on Sky. We are watching Mare of Easttown on Sky Atlantic and really enjoying that. We are also watching a programme on Channel 4 SAS: Who Dares Wins. At the moment a lot of Jay's days off are spent resting, he is struggling to come to terms with his dad's passing. Last week was a very tough week as it would have been his dad's birthday and also his dad's ashes came home. I am trying very hard to remain the constant, the thing he can rely on and doesn't have to worry about, as he has enough on his plate to deal with. So despite wanting to crawl into bed all day I stayed downstairs so he didn't have me to worry about as well.</span></p><p><span style="font-family: arial;">We will get there but I think I would be lying if I said that we both won't be glad to see the back of May 2021 or 2021 as a whole.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-0hA8QInT07g/YKT8QtnbuPI/AAAAAAABZNk/cZ8mdQcCyfglkV0X5cTf_5KASRK0H9lkgCLcBGAsYHQ/s2048/20210514_174846.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-0hA8QInT07g/YKT8QtnbuPI/AAAAAAABZNk/cZ8mdQcCyfglkV0X5cTf_5KASRK0H9lkgCLcBGAsYHQ/s320/20210514_174846.jpg" /></a></div><br /><span style="font-family: arial;"><br /></span><p></p><p><span style="font-family: arial;">Just because he is gorgeous and unconditional love is so important.</span></p><p><br /></p>The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.com0