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.
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.
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
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.
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.
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?
After the wedding ceremony making our way back to the hotel on the back of an Elephant
Watching the local dancers after the wedding ceremony
Posing for photographs as the register is completed.
Making our way to the part of the hotel gardens where the ceremony will be held.
Waiting for us to start the walk to where the ceremony was going to be held.
Just after we were declared man and wife
Our first proper photo after we had got married.
Back at our hotel room after the ceremony
On a day trip to the Portugese Fort at Galle Sri Lanka
Mr Myasthenia Kid enjoying the hotels pool.
Both the above photos were taken at the Sea Turtle Conservation place just down the road from our hotel.
I hope you have enjoyed the photos as much as we have enjoyed our little trip down memory lane.
** 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"
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.
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.
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.
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.
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.
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.
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.
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.
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).
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 http://themyastheniakid.com/2014/10/30/the-dogs-in-my-life-part-one/ and http://themyastheniakid.com/2015/08/06/the-dogs-in-my-life-part-two/ . 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.
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).
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.
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.
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.
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.
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