I have been absent from my website for nearly three months due to a horribly dramatic health relapse which came on quickly, too soon and hit hard.
I have been unable to move both hands and arms, have been suffering deafness, severe eye and mouth problems, a scary increase in paralysis, up to and including my shoulders; all of this is in addition to my usual problems - as if life wasn't bad enough!
The increase in pain and fatigue has been horrendous and, frankly, just getting up, washed and dressed has been wiping me out on a daily basis. All I have been fit for is looking at a computer screen - thank goodness for Kindle, downloading films and TV and my ipad which is easily propped in front of me when I am unable to hold anything - yes, not even a page of paper!
My consultant was desperate to get me MRI’d but as I am claustrophobic and unable to lie flat - wonky spine like most of us sitting-all-the-time crips - and he wanted me in there for a few hours, they booked me in to the open, upright MRI centre.
Staggeringly, after initially saying this was do-able with my mobile hoist, an overly officious administrator said that unless I could stand and transfer to the seat of the MRI without the hoist, they would be unable to scan me. It just takes one, doesn’t it?
Everyone else was willing to see what might be done but this one person made it all about them! So, after some tense conversations - my registrar said he had never spoken to anyone as rude and unpleasant - my scan was not done and three weeks were wasted in the trying as I visibly deteriorated.
Eventually, it was agreed, we could wait no longer and I hit the drop-in clinic for my usual drug regime which everyone, including me, hates but really, what else is there to do? Deaf quadraplegic with paralysed mouth and eyes or more toxic drugs? If there is a choice, it’s a no-brainer, isn’t it?
My consultant and I had another of those ‘we really need to be sparing with these’ conversations (him), with me querying ‘what are we saving me for exactly?’ He looked sad as I put forward the view that, seriously, I was unlikely to live to 80 given my state of health and, frankly, in my current physical condition would either of us want that for me? We agreed it was better to focus on getting me better as far as we can now whatever the future consequences (I did also make the point that EaZyD was pretty close to breaking point as things were though he of course pretended all was fine. Men!).
So, they loaded me up and I had the usual great responses. As I sit here now, my shoulders, hands and arms are back at about 70% capacity, my facial problems are recovering nicely, my deafness is gone, my pain levels are tolerable (stuff spreads through and lights me up like a junkie, I swear) and my energy levels have shot up - much to everyone's relief as I am annoyingly grouchy in relapse mode. i just hate being so helpless, who wouldn't?
I have to go check in with the hospital in a couple of weeks so they are able to see for themselves my ‘miraculous’ responses to a drug that, for most neuro-patients, loses efficacy after a year or two (am in year 15 myself) but, hey, no worries, it’s a small price to pay.
More troublingly, the whole experience has left me so flat that I have withdrawn into myself somewhat just to cope. I am struggling to reach out to others because I just don't really want to talk about it at all and I even feel very detached from the things I usually enjoy doing. It feels like I exist in a vacuum, alone, isolated ... out of the mainstream. The more time I spend living life on my own internal resources, the more content I seem to be - well, apart from trying to deal with the skin cancer recurrence and problems with BUPA in covering this (total pains in the ass! What is private cover for exactly? Oh, yeah, I remember, crap NHS resourcing ...).
My head has disappeared up my own ass and, worryingly, I am enjoying the view. Um, that cannot be good, can it ...?