medical and emotional update

So I had another horrific time at the torture chamber they like to call a local hospital last week, having tubes rammed into every available orifice and doctors not believing me that the painkillers wouldn't work because I was already on them and so immune to them....

Somehow, because the bloody doctors did not listen to me, the patient, I managed to cause havoc (how would that happen, I have no idea?!) and the consultant who filed the report on his findings wrote that it was 'easily the most difficult colonoscopy I have ever had to perform'. Bearing in mind he's a consultant, he's talking thousands upon thousands, and I was 'the worst'.

It was because they wouldn't give me Pethidine at the beginning. If they'd done that, all would have been well. But they gave me Fentanyl, which I already take so am already used to. It's not rocket science, kids , is it???

I don't want to go too deeply into it, though, because although I am deeply traumatised by yet another stupid local hospital fuck up, the upshot is I do not have colitis, it seems, or even gastritis; pending a number of biopsies coming back in a week or two , as Coeliac is a remote possibility... but it could have been a lot worse than it seems to be inside my stomach and bowel.

Seems the bleeding was merely from a few haemorrhoids which I knew were there, apparently; not the Elmiron.

So, I could go back on the Elmiron. Oh , joy! But at least it is an option.

The plan first is to get my urine cultured by this super amazing action woman called Dr A, here in the UK, who does cutting edge urine culture and works out what nasty bugs may be lurking undetected in my bladder, then prescribes treatment. Scary, full on a/b treatment, but still. She says she can't cure me, but she can help. And she is working on curing IC. At least she cares.

A lot better than the increasingly annoying Cheshire Cat, who sits in his big fat office smiling his big fat smile, spending less time with me now I'm not a private patient, and saying 'We do not understand Interstitial Cystitis, sorry'. This is my life, you fucker!!! And my children, and my extended family and what friends I have left.

So that's plan A. The broth culture. I can give you her details, if anyone is in same predicament and wants another route forwards/sideways/diagonally across....

Plan B is back on the Elmiron

Plan C is a new consultant.

Plans B and C may switch order.

The trouble is, I am losing all hope, becoming moody, irritable, horrible; I don't like myself very much so let alone what anyone else thinks. My Very Welsh Mother is becoming more and more like a parody of herself ('there is a dark secret,' she yelled tonight. 'Well keep it to yourself,' I yelled back, 'because there are two children, one cat, and a woman in her thirties in chronic bladder pain in this house, and we don't want to bloody well know'. Unsurprisingly, she left. I think perhaps she is schizophrenic. I know I have put her under far too much pressure. I feel, alternately, extreme pangs of anger and guilt. Not good for ones health, I'm sure...)

My boat is sinking.

Who will go down with this ship?

My white flag is up already, but I think everyone has stopped watching.

The second worst thing about chronic illness is that it is boring. The worst thing, of course, is that you can never escape the pain, and your beautiful kids and lovely loyal friends (not the stupid bitches who've abandoned me because it all got too much like hard work, but the few loyal angels who haven't, and I love them for it) - however much you love them and want to be 'cheerful', they know you're not, and they cannot have you back, pain-free, as you were before you got ill. Blue Eyed Boy feels this desperately. I hurt him, when I was the one meant to stop him from getting hurt. EVER.

But what I mean by boring is that folk stop watching. Why watch someone dragging themselves through the days, rarely laughing, or doing anything at all? Why would you want to watch that? Why would you want to read about it (although enough people seem to, on here, and I've got other leads for other writing too....)

And I have always thrived on being watched. Up til now, always pretty, always the centre. Now, ageing rapidly, I start to feel I am fading into mercurial dancing dust on the waves. Save me, oh save me, from being blown forever outside the loop of time, cries Rhoda in the Waves. But do I really want to be saved anymore? Do I? I must, I must, I must, says my Self, with my two beauties asleep in their beds next door. But inside my heart? I'm losing hope.