Friday 19 April 2002

I haven't mentioned it much lately, because I know how boring it can be, and I don't want this to become an ongoing bitch about my varying aches and pains, but I'm in really bad bad shape at the moment. I'm having one of those "plane with one engine flaming, billowing smoke, spiralling faster and faster as it nosedives to earth" phases. I know it is just a phase, and I will gradually improve and get better, as I have done a kerzillion times before ... I don't feel as though I will, is all.

Back in March I had a severe non-stop headache for over two weeks straight, which gradually metamorphosed into massive and exceedingly painful spasms in my neck, shoulders, and right down my spine particularly the lower back. Nasty, very nasty. There's been a few moments we've considered a trip to hospital; I'd go if I knew for certain I wouldn't have to queue or even worse, explain things, but heh, "snowflake's chance in hell" would be an understatement.

So I'm writhing and crying and whimpering in pain and the usual painkillers weren't cutting it; so I went up a level. I started taking the heavier stuff several days ago and oh jaysis.  Just when you think things can't get any worse ...  Side effects so far have included: insomnia (and I'm not a good sleeper anyway), constipation, and desperately itchy skin (I eventually had to wear socks on my hands overnight because I was waking up with skin and blood and probably bone under my fingernails), and would you believe, an increase in severity of pain.

Naturally enough I have been feeling pretty desperate; out of control pain - well let's face it, agony - is plain scary. Since the current painkillers aren't doing any good, I've decided to stop taking them, and just try to cope on ibuprofen, muscle relaxants, constant heatpacks and warm baths. I'm also spending a large proportion of my waking hours lying flat on my back on my yoga mat on the living room floor, doing occasional stretches.

So far things have calmed down a little; I'm still very very sore, but not manic.

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The main trouble with these levels of pain, so far as I'm concerned, is that there seems to be little or nothing I can do about it, let alone prevent it. There are no triggers; I just happen to have these episodes where everything decides, seemingly at random, to flare up.

And the main item that's bothering me is the total lack of medical support and awareness around me. I am seriously missing Zeus and the "team" of GP, physiotherapist etc I had built up over the years, people I could count on to help me through a crisis and liaise with each other as to how best to help. Zeus, of course, is the key. When I had flare-ups like this back in Perth I knew I could call on him, regardless of time of day or night, and he would help - with helpful suggestions, or getting me into hospital if necessary with minimum fuss, or giving me an appointment in his already-triple-booked schedule for a talk or emergency treatment.

Even if for some reason I couldn't call on Zeus, my GP and physiotherapist knew me and my case and what Zeus prescribed, so would be accommodating in helping me out.  Here, despite being here months and trying to build up a support base, I'm just not getting anywhere. Well, it took me about six years to build up the contacts I left behind in Perth, so I shouldn't really expect any different. It will take time, I know, I'm not so totally unrealistic that I believe everyone's going to drop everything to make life easier for me. But it is lonely and isolating, not to have a specialist or a truly understanding GP or a physiotherapist or neurologist or whatever that I can trust.

And that's just the medical professionals; there were other lifesavers in the form of my mum, to help out with shopping while I was out of action, people to talk to on the phone, a next door neighbour who would look out for me if I asked ...

I'll get there, I know. It's just kinda tough right now, when I'm feeling extra-vulnerable from coping with this current flare-up. I'm just seriously missing Zeus, practically mourning him, and my other doctors and members of my support base; I would cry and cry if I thought it would do me any good..

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Ah bugger, I've made this sound like such a pity-party, and most shameful of me, as though Sam doesn't support me. He does, oh he does. He's the most marvellous person in the world; he is supportive and caring without smothering me, he gives me gentle massages and strokes my head and takes my heatpacks for re-heating in the microwave before I even have to ask, and brings me cups of tea and glasses of water or coke with a bendy straw, and he was the one who made me wear socks on my hands so I wouldn't claw myself to death ...

He's the most beautiful loving caring man and I can't believe how lucky I am. To have found him in the first place, and then for him to have persevered to gain my trust and love ...

I snuggle up to him at night, and sometimes I think that there must be some higher power - call it God or whatever - to have granted me this man. 

Maybe it's all about the pain-pleasure principle, balancing each other out. For even when I am experiencing such shocking pain, I now have incredible pleasure (emotional, mental, and yes physical) as well. Maybe that makes it all worthwhile. I think it does.

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