I had been having a good couple of weeks at the start of this year, of course I had my usual problems but there was nothing that would test me as far as pain was concerned. I had brief episodes of bowel adhesion pain, the odd migraine but nothing that laid me low for days at a time, until now. Over the last few days I have had a flare up of occipital neuralgia that has come out of nowhere and no pain relief that I take touches it.
Back in December just before Christmas I had a MRI scan done to look at my neck to see if there was anything “bony” causing my pins and needles in my arm / hand / fingers ( yes this is still an issue after the car accident in August) . They were also supposed to be looking at the occipital nerves to see if they were inflamed. I got the report back last week that said as there was nothing structurally wrong, orthopaedics would be discharging me, with an open referral back should I need it. Their advice that these things would take time to settle down due to the fact I have EDS and we were looking at years rather than months. Which is a bit different from the private doctor I had a video call from in September that without examining me or knowing my medical history reported to my solicitor that I would be back cooking and shopping within 5 months. It is shame he made such a tit of himself seeing though I haven’t done those things since 2008! He didn’t even know that I use a mobility scooter or a wheelchair and claimed I left the car unaided at the scene of the accident. Making it up as you go along springs to mind, considering I never left the car at the accident scene and I haven’t walked unaided since 2008. I don’t know what is more shocking the fact that this guy works for my insurance company or that he could file a report with over 30 errors in and despite me telling the solicitor this, providing a correction for him, I heard nothing. But I digress.
The magical 5 months when I will return to my normal activities pain free is up on 19th February. After the last three days I really can’t see it happening. As I type my left arm is going numb. I have pins and needles in my hand. The occipital nerves on the back of my scalp feel like they have been set on fire and put out with a shovel. Yet apparently this will all miraculously disappear the stroke of midnight on 19th. Excuse my cynicism, when this crap has been spouted by a doctor that spent the sum total of less than 9 minutes on a video call with me.
When the occipital neuralgia is bad I can’t sleep because the back of my head / neck touching the pillow is agony. The other night I was so uncomfortable that I ended up sleeping without any pillows because my neck hurts so badly, even with the variety of neck pillows and normal pillows ( I have 6 pillows on my bed) at my disposal. I always know when it is going to be bad as in the evening when I am watching tv in bed, the back of my head starts to ache where it is in contact with the pillows. Sometimes I can prevent the situation getting worse by immediately lying down and going to sleep. However that only works 50% of the time and many times I am in the situation I found myself in on Monday night with ever escalating pain and nothing that I would normally do preventing it from getting any worse.
During the day during a flare up I am left with a stiff neck, a feeling of constant pressure on the base of my skull, that travels up over the back of my head. I get zaps of electric shock type pain into the back of my ears. The pain will also travel over the top of my head, go into my eyes and forehead. When it gets this bad it will trigger a migraine. I am left wanting to repeatedly bash my head against something in the hope it will do something to stop the pain. When it gets to this stage it is exhausting because a) I am not sleeping and b) pain just wipes me out. It makes my mood very low which I hate because sitting around feeling sorry for myself is not something I do. I chose a long time ago that I wasn’t going to sit and cry every day wailing why me? Because basically why not me? Plus crying everyday would be a waste of the life I have, having lost friends along the way, I don’t want to waste time wallowing. I want to spend my life doing the things I enjoy, spending it with people who are dear to me.
Don’t get me wrong there are days when I get fed up with it all, days where I wish this wasn’t my life. I limit myself to a maximum of 24 hours like this and then I have to snap out of it. The most I ever moan about my condition is in the pages of this blog. I use this as a place to express myself, people can chose to read it or scroll on by. I sometimes equate my blog as shouting (sometimes screaming) into the void. It is somewhere I can get something off my chest and then move on. By the time people read this, I am usually in a better place and ready to face the next challenge.
A lot of the times writing the blog post is enough to make me feel better about something. It is deeply cathartic. I have also started keeping a diary this year for the same reason. Sometimes it is nice just to feel like you have voiced your fears / concerns / hopes / dreams. You don’t necessarily need someone to listen to them to validate your feelings you just need to get them out of your head.
I am hoping that this flare up will soon subside and I can get back to “normal”.