Thursday 04 December 2003

15/10

Its been a while since I wrote last, and for good reason; I couldn't get out of bed for several weeks there (except to write a couple of brief entries which I have just fleshed out - oooh bad journalling habit), couldn't read or write, let alone sit up with my laptop and think about what to write.

Its been one of my hell times, a massive flare-up of pain - joints and muscle spasms - that has left me feeling like I've been run over by a road-train, flattened by a road-leveller and jumped up and down on by an entire excitable rugby-watching crowd.  I had two weeks in mid November where daily pain levels were at a bad 8 or 9 out of 10, and totally unresponsive to usual dosage of pain medication let alone a rather large increase; then I had a week's respite before it all flared up again.  This time it was two weeks of pain levels that went off the chart and cannot be described - 15+ out of 10 sounds about right.  I was writhing and arching my back and practically screaming with the pain, and it took all my self-control and techniques learnt over the years to keep me as calm and still as possible, and to keep breathing. 

I was actually very worried about the whole state of affairs, and usually I'm not because its just how things are, you know?  I just put up with it and see it through ... but this time I was seriously considering hospitalisation.  I hate hospitals, will avoid getting anywhere near one if I can help it, and find that I'm better off dealing with severe episodes at home, where I have my own bed, music, company.  But hospital looked pretty good for a while there. 

I haven't eaten for over nine days as of writing; I keep throwing up, even tiny sips of plain water, and as for the attempt to drink some Lucozade/glucose drink ... ew.  At one stage I threw up 40 times in a 36 hour period, and I'm not a big vomiter.  Oh I feel nauseous a lot of the time but actual spewing is quite rare for me.  That amount of vomiting was pretty scary ... apart from the gross-out factor.

Tuxedo was absolutely incredible through all of this.  He did all he could on a practical level eg getting me hot packs and cold packs, propping me up and making me drink aforementioned tiny sips of water, helping me shower, feeding me my medication and pouring out the measures of my emergency liquid formulation of pain medication.  He was also just there for me the entire time, staying right by me, holding me, stroking my back for hours at a time to try and ease some of the tension and help me relax.  My parents were so impressed by him and his level of support and care; if they ever had any doubts what a champion feller I have, they've been squashed pretty damn thoroughly.  However, not as impressed and grateful as me; I couldn't get over, and it never ceases to amaze me, how supportive and caring and understanding this guy is.  I am very very lucky to have someone who not only puts up with my physical state/condition/disability, but actively supports and nurses me when I need him - and only then, he never ever ever smothers me or tries to cotton-wool me; he has the balance of carer and equal partner perfectly calibrated.

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So yeah, its been an incredibly rough month.  Its going to take me another month to recuperate - even with additional medical treatment and therapy - and then I'll be starting from square one as far as general health and fitness goes.  Ah well ... all I can do is survive through these times as best I can, and get back into "normal" life and routines as soon as possible, without running the risk of overdoing things and having another flare up.  Pacing is key; I'm quite good at it by now but it takes time, and I do get fiercely frustrated and annoyed at the whole deal.  Acceptance is not my strong suite, and I am coming to the conclusion that I actually need some outside assistance, eg counselling, to help me deal with the mental stresses and angst that surface as a result of having this fucking stupid body that lets me down, over and over again.  ARGH.

15 out of 10 = not much fucking fun. 

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