Happier than I have ever been

 A few times of late I have thought about updating the blog and then something happens and I forget. It is never deliberate, I certainly never anticipated such a long break and I can't promise that I will be updating on a regular basis either. So much has happened in the last 18 months I sometimes have to stand still and take stock because life is certainly not what I expected it to be back in 2020.

So for those of you who don't know me outside of cyberspace, we have moved house. After 26 years living in Exmouth in East Devon, we have moved to a small town just outside of the Dartmoor National Park. From my bedroom window I can see the Western Beacon, which is where both Mr Myasthenia Kids ashes have been scattered. We now have a huge garden, I have taken to growing plants, me the person who was always known as the black hand of death where plants were concerned.

We are surrounded by trees out of the lounge window there are trees, out of the kitchen / dinning room there are trees. I have never felt so completely grounded in my life. My mental health has also never been so good. The wait of others expectations and being guilt tripped for not dancing to others' tunes has gone. Dealing with having to see people I didn't want to see on a near weekly basis in the summer has gone. The threat of people turning up at my house unannounced has gone. I am no longer forced to act as the parent, to my family. Unless you have lived through that situation you could never comprehend how much that mentally drains you. The stress that I have borne for every single day of my life has fucked off and I have never felt happier.

My days are filled from the minute I get up to the minute I go to bed. Moving to a much larger abode has taken its toll on me physically but as we have been here nearly 11 weeks now I have slowly become accustomed to it. Dembe and I are out in the garden whenever the weather is dry. Dembe has got a new dog walker that takes him out for 30 minutes when his dad is working late - Mr Myasthenia KId has managed to keep the same job just transfer stores. He is working over the other side of town so I no longer see him at lunch time as he just wouldn't have enough time to travel there and back but Dembe and I are managing. Dembe has never been so happy, he loves his garden and he loves the fact his mum and dad are happier here.

We have managed to set up a hedgehog feeding station in the garden and one of Mr Myasthenia Kids leaving gifts from his workplace was a night vision wildlife camera. Watching the hedgehogs on the camera has been amazing. We know we have at least 4 visiting and we have a courting couple.

We have so many plans for the house and the garden, plus we would like to have a holiday. The last time Jay and I went away anywhere was 2006. The last time we had a proper holiday was in 2003, so it is a long time overdue. We would like to go to Scotland, I would like to show Jay all the places I visited as a kid and go and visit our friends north of the border. Some time as a family away from the stress and strains of the last 18 months and every day life would do us both good. We are just waiting on the finaliasing of the house sale now.

I am always hesitant to say life is good as I seem to spend my life waiting for the other shoe to drop. But life is ok, we love the house, we love the area and we are starting to find our way around. We have had friends over to visit, friends down to stay, friends booking in short breaks as they can't wait to start helping us tame the garden and turn it into our vision. There is no denying though the garden has good bones and will be a long term project. At the moment our hands are tied with nesting season. Many of the birds are now on their second broods as are the mammals such as hedgehogs.

This is just half the garden, as you see it from the upstairs bathroom window.

Lots of the shrubs need massively reduced down as they have gone wild. The garden needs a whole new fence around the outside, we want to plant, well I want to plant lots of native species to make the garden as wildlife friendly as possible. I would also love a paved seating area in the corner where the gazebo is. We are currently losing at least 15ft of garden due to the over grown shrubs.

We splashed some paint around the kitchen / dinning room as that was the one room that needed as much help as it could get. We had a tin of Farrow & Ball paint ( James White ) left over from where we were tarting up the old house prior to selling. The painting took a day and it felt nice to put a stamp on the decor. As we have quite a few renovations planned the rest of the decorating will be done as we complete each room.

I forgot to say last month we had a baby starling fall down our chimney. We had to call out a gas engineer, on a Sunday and fathers day no less, to move the gas fire so that we could free the bird. Thankfully it was unharmed and flew out through the lounge window when it heard its mum calling for it.

Health wise I am much the same. I am currently unwell due to Discontinuation Syndrome. I am currently coming off my antidepressant Mirtazapine / Remeron. I was only on 30mg and have been doing a plan as agreed with the pharmacist at my new doctors surgery. I am actually finding coming off this harder than reducing my morphine dosage, I have gone from 60mg daily to 20mg of slow release morphine. I have always been sensitive to antidepressants and have a shocking time coming off them. This one has been horrendous. I am going to have to taper much more slowly, I had got down to 15mg and started doing 15mg every other night. However since starting this part of the tapering I have been suffering severe side effects especially on the day following the night with no mirtazapine. So I am going to have to drop to 7.5mg and then do 15mg one night and then 7.5mg the next. I dont know what the fuck I am going to do after that as the side effects have floored me - flu like symptoms, diarrohea, fatigue, headache, vertigo, insomnia, sweating, nausea , dry mouth etc. Every time I come off an antidepressant it is so awful, I always say I will never do it again and yet here I am doing this for a 4th time.

Reducing my morphine dose has been a bloody doddle compared to this, I have managed to get down to 10mg twice a day in 12 weeks. Which to me is bloody amazing considering I have been on the stuff since 2011. The morphine reduction was my idea and wasn't pushed on me. I started doing it myself right before we moved as it had become clearer and clearer to me that it just wasn't that effective anymore. I also panicked, probably because I am 50 next year that if I got struck down with cancer and needed pain releif I could have totally fucked myself over by being on morphine at this dose ( which isn't actually high its only when it is above 60mg twice a day / 120mg daily is classed as a high dose ). I also wanted to see what my pain levels were like without it. One of the first things I found on reducing the night time morphine dose by 10mg was I was sleeping better and I had started dreaming for the first time in years. I also felt less foggy and had more mental clarity. I was amazed at this huge improvement and thats what spurred me on to continue.

At the same time I am slowly reducing the amitriptyline I have been taking for nearly two years due to the occipital neuralgia caused by the car crash. As I am not sewing as much currently the pain is better although I still have nerve pain in my left arm.

As you can see my life has changed in just so many ways, sometimes i just have to take a minute to catch my breath and recognise how far I and we have come. Despite having Mirtazapine withdrawal issues I am still feeling really happy, grounded and settled. Much more than I have ever done in my life

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.

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.

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.

Stress, migraines and other sh*t!

 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 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!

Holiday

 As hubby is on a weeks holiday from work I shall just leave you with this video of Dembe having a swim on Woodbury Common this week. He loves having a swim. Jay takes videos as I can't be there to see him swimming.

Whitsun Bank holiday

Sorry this post is going to be a short one as I am just not feeling that great.

I don't know what it is about the first few days of meteorological summer but I am always left feeling really rough for the first few weeks. You would think with the sunshine it would leave me with less joint pain and with my spirits lifted. But over the years I have found the opposite to be true.

Thanks to Facebook memories I know for the last few years every bloody Whitsun bank holiday has resulted in me having an awful migraine. The common denominator in the last few years has been the weather, brilliant sunshine and the fact that I have spent the majority of the day in the sunshine. My Whitsun migraines are ones that even Sumatriptan struggle to shift and give me a searing pain in the centre of my forehead that makes sleep impossible and I am left feeling battered and bruised the following day.

I am still exhausted from seeing family at the weekend and the mega migraine. So much so that I have barely done a thing since, other than get dressed. Today I am still out of sorts and I am freezing cold because due to the UK's wonderfully crazy weather we have gone from 23 degrees ( and more) yesterday to rain and temperatures hovering around 15 degrees. For someone like me who struggles to maintain their body temperature at the best of times, I was just getting used to the heat when I am back into a sweatshirt with my finger nails going blue from the cold ( and shitty peripheral perfusion due to PoTS / ANS dysfunction).  

I find any seasonal shift difficult to cope with at the best of times but this week has been a real shocker after needing fans on constantly to suddenly feeling like I could do with having the heating on or wearing several layers. Until we are in a regular weather pattern I will struggle adjusting to the heat or the sudden drops in temperature. Any swings in temperature upset my joints. So with the change in weather front coming in overnight from yesterday afternoon I was left feeling like my joints had been set on fire. It was just so uncomfortable and I really struggled getting comfortable. The joint pain only adds to the exhaustion because it is a constant battle with temperature regulation versus being able to use heat to ease my joint pain - which is the only thing that works and is not much fun during the summer months.

I did have a lovely Sunday and despite being wrecked for the last few days it was worth the trip. Dembe certainly enjoyed himself, whenever he is happy I am happy!

Happy Easter

I just wanted to take the opportunity to wish my followers a Happy Easter ( fo those that celebrate it or any other religious festival at this time) for the rest of us heathens we shall just be grateful for the time off due to this religious festival as it may only be the first of April but I don't know about you guys I feel like I have lived a couple of life times already this year.

I am bloody exhausted and sick of fighting for the most basic right to healthcare. I am sad because my husbands father is terminally ill and has a limited amount of time left. I am stressed and emotionally drained not knowing what is the best way to support Mr Myasthenia Kid through this. I just don't know how much more I can take being thrown at me. It is very tempting to hide under the covers and just not deal with it. But then I remember the blonde bastard who has the ability to make me laugh at the drop of a hat and brings so much unconditional love to my life. I don't post about him very often on here purely because he has his own blog www.thedembediaries.com .

So here are some recently taken photos of my ray of sunshine

I thank my lucky stars I have this crazy hound in my life every day.

Birthday Week

 It has been our birthdays this week, so all my routines are out of whack! We have managed to enjoy ourselves despite the imminent lock down happening, well on the day this blog post will be published.

Mr Myasthenia Kid is on holiday this week so managing to mostly avoid the pandemonium which is his workplace at the moment whilst the panic buying has begun again. 

I am absolutely shattered after two days of celebrations, I am getting too old for this shit. It was great seeing a few people, who made our birthdays really special - hilariously Mr Myasthenia Kids mum forgot it was his birthday. She rang to speak to him and he thought she was ringing to say happy birthday!

We had some lovely gifts, lots of cards and many many wonderful messages.

I made the Happy birthday banner a while ago, I am rather pleased with it. It will be out again on 16th November when it is Dembe's 2nd birthday. How can he be two already ? It is just crazy how quickly that has gone by. His dad and I are still deciding what we will be getting him for his birthday!

Exactly a week after my birthday it will be my dad's 70th birthday, due to lock down I won't be able to spend it with him which is sad. I will speak to him on the phone and possibly video call him.

The favourite gift I got Jay and the one I nearly accidentally told him about on numerous occasions was his personalised Labrador print.

It says at the bottom Wet Kisser, Body Wagger, Toy Bringer. I wanted it to say Wet Kisser, Bed shagger, Toy bringer but decided it was too rude and could be embarrassing when we have visitors, although it is highly unlikely the vicar is likely to pop around for tea any time soon.

Anyway it is just a short post this week whilst I am recovering from our birthdays.

The lies sometimes make you stronger

I wrote last week about the problems I was having with my neck and back, the universe has a twisted sense of humour because the same day my blog post was published I received the medical report from my solicitor that I was asked to read and if I agreed with to sign as a statement of truth. 

Within the first few lines of the report it became clear to me that the report has been a copy and paste job by the doctor with whom I had a video call on 19th September. His first lie was that the assessment lasted 15 mins. It had actually lasted a whole 8 minutes and 12 seconds I had the WhatsApp screen shot to prove that. He couldn't wait to end the call, asked me no pertinent questions and as soon as he found out that I didn't work I was treated like a feckless waster. I am quite sure that this man also operates as a report writer for  Atos or the like due to his inability to capture the truth in anything at all he wrote. 

It was uniquely distressing to read this report, compounded by the fact that he claimed that in 5 months I would be back to cooking meals and doing the shopping. Two things I haven't done since 2008, had he bothered to ask me he would have known this. I also walked unaided from the car at the site of the accident, again something that wasn't discussed with him, I didn't get out of the car until we arrived home. I haven't walked unaided since 2008, I use a walking stick / crutches for short distances around the house. I use a wheelchair or mobility scooter outside the home. Again if he had asked me any questions relating to my normal level of health during those massive 8 minutes he wouldn't have embarrassed himself so thoroughly.

I had to email my solicitor that I couldn't sign the report as being an accurate statement of truth and then follow that up with a letter that went through the document line by line highlighting the issue with the information that had been stated. There were over 30 errors and this is a doctor that is in effect working for me or the solicitors firm. He probably charged them several hundred pounds for the report and "15" minute consultation. The problem is this report is what the solicitor uses to value the amount my injuries are worth for the want of a better phrase. If the report is riddled with inaccuracies and states things like after the 1st 4 weeks Mrs Myasthenia Kid was no longer using pain killers for her injuries when in fact I have had naproxen and amitriptyline added to the vast cocktail of medications I take daily including morphine. Again the medications I take daily weren't mentioned in the report.

I had been very careful to ensure that I mentioned to the doctor carrying out the video call assessment that I suffered from Ehlers Danlos Syndrome as I know that it will impact my healing time. Unfortunately it became very clear that this doctor was clueless about EDS and it's impact on connective tissue. I also told him about the dysautonomia but on the report where it stated significant medical issues he had put none. I pointed out to my solicitor that my medical notes make War and Peace look like a Novella. The doctor also managed to mix up the terms Spondylosis and Spondylolisthesis, I made it very clear that I suffer from facet joint arthritis in my spine due to having EDS. I also have a Spondylolisthesis, he wrote I had Spondylosis arthritis, which is simply not true and not what I told him.

On reading the report I burst into tears, I was so angry and so fed up that yet again this would mean another fight to be believed. Why is it nothing ever goes smoothly. However I have that crappy report to thank because it made me push for a face to face  gp appointment, which I had yesterday. 

Since March our doctors practice like many up and down the country have been doing video calls, phone calls or simply sending text messages rather than seeing many patients face to face. They have been seeing patients only when they deem their symptoms are serious enough to warrant a face to face. I have since August the 11th filled out 4 e consult forms regarding my neck / back issues from the RTC. The last one I contacted them because I have weakness in my left hand, which is getting worse. The weakness was first observed by my physiotherapist back in September when she did a full assessment of me. After a couple of sessions of physio I had hoped that I would be seeing some improvement but we are now 11 weeks down the track and things aren't getting any better.

The doctors surgery is operating a new weird system for face to face appointments. Patients have to knock on the glass door at the front of the surgery and wait for a member of the reception team to come and ask you your name . They then assign you a door to wait out side of - there are 4 doors that open onto the street. Unfortunately the only way into the surgery for someone like me who needs a mobility scooter is through reception the old way. All the other doors into the practice have steps, which makes it impossible for me to enter. I didn't think it would be a huge issue after all you would think the NHS would be great at helping disabled people but actually they have to be one of the least disabled friendly institutions in the UK. It makes me sad because they should be leading the way.

Hubby and Dembe wait outside with me whilst I wait for the receptionist to come and open a window and shout out a few questions at me. High tech eh? The first question she asks when seeing me on the mobility scooter is "do you need to use that inside the building or can you get out and walk" . I try not to be offended at the use of the word that or her thinking that suddenly being in the presence of a doctors surgery would have the Lazarus effect and have me walking. Through gritted teeth I answer that I do indeed need to use "this" and will be using "it" inside the building. If I could walk around the outside of the building and stand up waiting to be admitted do they not think I would rather than use a scooter. It beggars belief that at a doctors surgery I feel like I am in the wrong for needing a mobility aid.

Thankfully the doctor I see is really nice, he has moved the chairs around in his room to accommodate the scooter. I have a full assessment performed by him, yes there is weakness in my left hand and arm and after 11 weeks ( to the day ) there should be some improvement. He has now referred me to specialist spinal physio because if we don't get this compressed nerve root better I am looking at permanent weakness or possibly surgery to free it. Obviously with the second wave of covid happening means that everything is going to take much longer. At least now I am in the system and the specialist spinal Physio can refer me onto a surgeon or for imaging studies.  

So despite the tears I had last Thursday over the medical report it did spur me on to make a fuss and see a doctor and get things moving. I had no clue that it was 11 weeks to the day from the accident. The lies sometimes make you stronger.