Bigger break than expected

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.

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 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.

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. 

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.

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! 

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.

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.

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.

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.

Keep everything crossed for us that the house sale goes smoothly, we could do with a bit of good luck for a change!

Self care

 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.

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! 

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. 

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.

For now self care takes priority.

A Sh*tty Week

 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.

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.

I first thought something was amiss last Sunday, 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. 

Monday

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.

Tuesday

 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.

Wednesday 

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.

Thursday 

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.

Friday 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.

Saturday

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.

So fingers crossed for a better week eh?

PS I forgot to mention the numerous episodes of pre-syncope throughout the week!

Weathering the storm - keeping a relationship strong

  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.

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.

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.


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.

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.

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.

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.

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.

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.

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.

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.

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".

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.  

So to break it all down here's what works for us in weathering the storm together;

1. Support each other through the ups and downs.
2. See the other person's situation / point of view.
3. Get as much family / friend support as you can to lessen the burden.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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.

That's how we are weathering the storm together.

Dembe

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.

 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.

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.

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.

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 here. 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!

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! 

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.

 

Our little space cadet was really out of it.

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.

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.

 He had a huge hairy cows ear to chomp on and that cheered him up.

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!

That was the first time we saw a glimmer of the Dembe we know and love since he had come home from the vets.

 

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.

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.

As you can see from the photos his eyes are totally different and he is fully present.

By Saturday he was completely back to normal!

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.

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.

The vet told us to start him on joint supplements, we started him on Golden Paste 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.

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.

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.

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.

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.

Bl**dy Alexa

** Apologies to anyone named Alexa, this isn't aimed at you**

 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 😂😂😂

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.

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.

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.

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.

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. 

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"

Confidence

 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.

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.

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.

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.

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. 

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.

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".

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,

I had great fun removing the papers although it did make a bit of a mess! 

Dembe was very curious

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.

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.

The last Bank Holiday of Summer 2021

 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.

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.

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.

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.

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.

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.

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.

It's a whinge ( sorry )

 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.

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.

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.

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.

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.

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.

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.

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.

Mischief

 I do some really daft shit when I am half asleep but last nights efforts beat anything I have managed previously.

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.

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.

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.

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.

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.

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. 

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. 

It amazes me how I can function half asleep and manage to get myself into so much mischief.  

I'm back

 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.

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.

*** for those of a delicate disposition skip the next paragraph!**

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.😂😂😂😂😂😂😂

** it's safe now **

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.

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.

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. 

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.

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.

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.

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.

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.

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.

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.

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!😂😂😂😂😂😂😂😂

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.

It did seem strange not to be blogging or thinking up blog posts whilst I took two weeks off.

 I'm back!

HOT

 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.

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.

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.

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.

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.

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.

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.

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.

We hose this down regularly to ensure it is lovely and cool for him.

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.

**

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.