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.