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.

I’m back

Like all holidays, that sabbatical seemed to go alarmingly fast! It seems like 5 minutes ago I wrote and told you I was taking a break, for the first time in forever. Loads has happened 

since I wrote my last blog post back on 24th October. Despite the fact it has only been 3 weeks. Crazy how life goes.

Hubby and I had a good birthday and were spoilt by our friends and family. Due to being unable to get the time off work I spent the afternoon of my birthday with Heather. She brought a load of second hand clothes with her from a local group, where you offer things to the community and in return if you take an item you donate fresh food to the families being helped by the group who are receiving food bank parcels. The group is currently helping around 20 families who through no fault of their own are struggling. In all my life I don’t think I have ever known so many people who are struggling financially or so many people relying on food banks. When I was growing up I had never even heard of a food bank. Yet for some families these days it is the only way they can feed themselves once the rent and bills have been paid. So whilst I had fun with the clothes at the back of my mind were these poor families.

We had a good laugh trying on the clothes, my brain is taking a long time to catch up with the fact that I have lost 4 and a half stone (63lbs) I see smaller size clothes and think well that will never fit and then almost die of shock when I can get it on. Some of the clothes were hideous or just too revealing. But I am so grateful for the stuff I have been able to take from it to tide me over until I get to my target weight. At the moment its jumpers and stuff I can layer up that I need due to my poor temperature regulation and menopausal hot flushes. I am either freezing cold or throwing every item off because I am suddenly dripping with sweat. 

Heather gifted me a wonderful birthday present, which I haven’t stopped using since I unwrapped it. It is a hot water bottle that is long and skinny. It must be over a metre long and about 10-15cm wide. It can take up to two litres of hot water. What I love about it is that I can wrap it around myself. So I can apply heat to my lower back and hips in one go. Where as before this could have only been achieved using three. 

Mr Myasthenia Kid bought me a wool pressing mat to help me with my sewing and embroidery. It means I don’t have to wait for him to be home to get the ironing board out. Any surface can now be turned into an ironing board and it produces the most amazing results. I also got a beginners book on crochet. I have wanted to teach myself for ages and wasn’t expecting anything crochet related until Christmas so it made a lovely surprise. 

I managed to get lots of things made which reduced the panic I had been feeling. I still have a mountain of stuff to do but it is a much more manageable mountain. I was feeling before like I was being suffocated under the list of jobs that needed done which is why I took time away from the blog. I just needed to get rid of the jobs that I could and focus on the stuff that I needed to get done. Some stuff I can post here but the rest I can’t due to them being people’s Christmas presents.

I’m still making my way through lots of stuff but I no longer have to keep pushing myself beyond my limits. I am no longer surviving on painkillers and very little sleep.

We also managed a trip out for a few hours for a walk, somewhere I could take my scooter. Dembe adored going to Haldon Forest. He was spinning around like a kid with excitement.


It was so lovely to get out and blow some cobwebs away. I said to Jay in the car on the way home “if you told me at the start of the year that I would be able to feel this happy again ever, I wouldn’t have believed you”. Even when we had Dembe in the beginning I just felt like I was going through the motions. Now I feel like I am living again and want to be present.

I have taught myself to crochet ( how well I have no clue) I started on the 2nd November ( badly) and found some videos to help me. My hands have been fine up until today, the base of my thumbs are killing me this morning and my fingers are really stiff. I have managed to make myself a snood / infinity scarf from a yarn tea cake ( huge ball of variegated yarn ) which I finished last night and I am also working on a Christmas blanket.


The pattern on my snood is almost like one called vintage shells. So it is raised up and not flat, I made a lot of mistakes, mainly counting – thanks dyscalculia  but I am incredibly proud as considering I hadn’t even picked up a crochet hook until 2nd November 2019 , I think I have done well.

I’ve had two appointments, the eye hospital where they were incredibly pleased with how well my eyes are doing with these new drops. I still have the odd evening where I forget to apply them because I have fallen asleep but on the whole I do remember. I had the dentist last week and as I thought I need a filling so that will be happening on Tuesday next week. I am trying to keep that at the back of my mind. Tomorrow I have an ultrasound on my neck to check out the lump only I seem to be able to feel. It is non stop fun here.

We are back at dog training again. Dembe loves it there and cries with excitement as he knows where he is going on a Tuesday evening. We have also started dog agility training for fun, our first lesson was on Sunday. Dembe did incredibly well, his obedience training has really paid off as he was by miles one of the best behaved there, even though he was sick – probably because he had been swimming in the sea before we went. Yes my baby had swam in the sea!

This Saturday is Dembe’s first birthday! Can you believe it? It is crazy as we still see him as our tiny pup. He won’t be fully grown for another 12 months but I think he will always be our dinky dot.

And yes I am knackered and in pain from all this going out. I have to try to pace myself and get some down time in between excursions but unfortunately that isn’t always possible. I am learning to be kinder to myself and not see rest days as a failure or lack of achievement.