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.

Neck pain / back pain / whiplash?

I hate to admit it but I am really struggling with my pain levels at the moment. For some reason towards the end of last week my neck started playing up, waking me from sleep because the pillow felt like a house brick and I was unable to get back to sleep due to the pain. It is interfering in everything I do. It is very rare for me for pain to cause me to stop eating, I am famously the girl that was still hungry and eating when I had a partially obstructed bowel. Basically nothing stops me eating or drinking ( normal fluids not alcohol ) other than my menstrual cycle years ago when I used to get through the first two to three days on sugary tea or coffee. So believe me when I tell you that the pain is so bad I am struggling to eat.

Since around Wednesday last week I have woken up at 2.30am, with the feeling that my pillow has been swapped by some sort of sadistic fairy, to a house brick. The only way I can describe the pain in my head and neck is that it is like someone has hit me with a shovel. I spend the next few hours trying to fall back to sleep but I can’t get comfortable. It doesn’t matter how many pillows I have, rolled up bath towels used as a neck support I can’t get away from the pain in ,y neck. I started amitriptyline a few weeks ago because I couldn’t tolerate the neck pain any longer. It has taken me a few weeks to get it up to 30mg a night and then it just takes the edge off the pins and needles in my arm and hand. I have to up the dosage slowly because I end up with the dreaded amitriptyline hangover the next day which leaves me feeling disorientated and pukey the following day.  I have permission to go up to 50mg a night from my gp, I am loathe to go that high when I am not supposed to be on this medication due to having PoTS. I was offered gabapentin but that turns me into a zombie and does nothing for me, I didn’t want Lyrica again as that took me an age to come off. So amiltriptyline was the only option I was given for the nerve pain I have.

What really grinds my gears is that this pain has not been caused by something I have done, this was caused by the twat that reversed into out car, back on August 11th. I had a really crap assessment done by a private doctor over WhatsApp back in September ( a call that lasted all of 8 minutes 22 seconds!!!!) who informed me it would take a year to get better from this injury. However this doctor knew absolutely nothing about Ehlers Danlos Syndrome and didn’t ask me if I had any previous issues with my spine or neck. In fact he barely asked me any questions at all if I am honest. I came away from that consultation and burst into tears. I had prepared notes, printed off my medication list but once this doctor found out that I didn’t work he wasn’t interested. Every time I tried to provide an answer to a question or give him some information he talked over the top of me. To put it bluntly this doctor doesn’t even know that I am a wheelchair user or that I use a mobility scooter when outside the house that is how little he asked me. Nor did he ask me how the accident had impacted me. He was only interested if I had taken time off work which was obviously a no.  I was so distressed by the lack of an assessment, as this will be used to base my claim for injuries that I sent an email to the insurance company telling them what a crock of shit the whole thing was. I was told there would be a report provided within 21 days and that they would send it to me so I could check for inaccuracies. I am still waiting.

The pain in my neck, back and base of my skull is so bad today that I have had to resort to wearing a soft cervical collar. I really try not to use this as I am always warned by physio’s and doctors that this will leave my neck muscles weaker in the long run. However this has always been the best form of pain relief for me as it lengthen things out and takes the pressure off my neck. 

On Friday last week I ended up in agony from raising my arms when threading my embroidery machine. I got stuck with my elbows raised and my ribs feeling like I had suddenly been put into a very tight corset. Every time I went to move I felt like I had been zapped with a cattle prod. In desperation I filled out an e-consult form, the current way to access the doctors surgery, it was late at around 2pm, so I didn’t think there was much chance of me actually getting a response. Unfortunately I was right, my back did ease off a little bit, probably due to the amount of gin I drank as a last ditch attempt to get the muscles to relax after trying everything else in my arsenal first. I did get a call at 9.30am on Monday and got some diazepam. That has stopped the spasms in my back but it hasn’t stopped the muscle spasms in my forehead, it is these that lead to horrendous headaches and occasionally migraines like I have endured today. 

I am writing this on Tuesday, Mr Myasthenia Kid has already told me that I don’t have to go to dog training this evening but that would mean I had missed the last session of the last two courses. The last one I missed was because I was in hospital being checked out the day of the accident. I have already missed one session from this set of 6 due to being unwell, I have never missed so many sessions as I have this year but then my health has been an unmitigated disaster this year. I know my health is poor but I like to pretend it isn’t and when I am confronted with the fact it is shit like I have this year it makes me miserable.

I had got to a sort of place where my neck / back wasn’t getting any worse but it wasn’t getting any better. It was liveable and although impacting what I could do, I could still do ( for a limited amount of time ) the stuff that I like to do craft wise. However now I am really struggling again and I feel like I am back right at the beginning again of when I first got injured and have absolutely no clue why last week it got so much worse again.

If you couldn’t tell I am seriously pissed off today.