Friday, 7 September 2007

Never Do Harm

The thing that frustrates me most is the up and downs, the peaks and troughs, because one always follows the other and not necessarily in any way that you can predict.

If I could have one wish - apart from for it to be gone - it would be to be able to nail it down, to give it some semblance of order. Say, Monday-Friday for the up period. Saturday and Sunday for the down. At least then, I'd know where I was on any given day.

I suppose it's complicated here by what you might call co-morbidity - which thankfully, has nothing to do with dying, rather to do with things that exist together and feed off each other. Co-existence would be a much more positive way of referring to it, but that would imply an inaccurate sense of peace.

In my case, there's the agora, and the anxiety, but there's also the migraine, the run up to which presents very similarly - it's always a struggle to tell one from the other but because a migraine is a more socially acceptable excuse, publicly it is usually the one that wins the day. And lumped on top of that is a nice healthy dose of protracted benzodiazepene withdrawal syndrome; a recognised phenomenon that despite overwhelming evidence to the contrary, the medical profession steadfastly refuse to believe in, perhaps to wash some of the guilt from their hands.

The day I was out and about and couldn't remember where I lived was the day I knew it was time to wean off the meds. It's my 4-year anniversary in a little under a month. Funny how you remember these milestones. So, with a little help from the wonderful people at, months and months of careful planning and cutting ended on the 7th October 2003, after just six months therapeutic use at what they told me was an 'insignifcant dose' and turned out to be anything but. While I was doing so, I had A Big Plan: cut the miniscule safe amount on a Tuesday, because Days 4-6 after a cut were always when your world turned upside down. That way, I could still make it to work until the end of the week, before it floored me on a Saturday. The following days - 14 or so - until the next cut were always rough, but I knew the worst was, in theory, over.

I wish it still worked like that, but it doesn't; now there is no Being In Control, no Knowing What Days You'll Be Able To Go To Work, no Big Plan. Just hanging on for the ride. Up and down, left and right, head over heels, trying to stay one step ahead of a screwed up central nervous system without falling off completely.

Sometimes, on the worst days, I think about suing. It's been done before, although the £40K settlement in Ray's case was a piss poor insult for the 14 years of medically-induced hell he endured. But because there was no help, and because nothing was documented apart from a repeat prescription and a sick note for the DWP once a month, there is probably no recourse for me. I suppose at the very least it might raise awareness that the hippocratic oath is failing the people it is meant to protect.

Does this sound bitter? I do hope not; bitterness is a pointless emotion. But I'm tired and frustrated, more than anything because not being able to be reliable makes me feel like a big fat failure.


Ness said...

It doesn't sound bitter at all. As always, I'm a bit useless and can only offer internet hugs.

bohémienne said...

No, it doesn't sound bitter, and you are right that bitterness doesn't make it any better anyhow. It's not fair, but it happened, and you're dealing with it. More Internet hugs from me, too.