random Sunday evening thoughts

So it's Sunday evening.

More random comments from Blue Eyed Boy on watching the Voice: 'When I am old, I want to be Tom Jones', and 'I am going to pray just like that; the Bizy praise'. Eyes closed, fingers pointing to the sky, silent rhapsody.

Results tomorrow on private urine 'broth' cultures. Am so scared of what they will have found I don't know what to do with myself. I don't like the doctor very much who has done these cultures and I don't think she's very good at managing my anxiety (have never actually met her; all over phone), so really am not looking forward to it all one bit. Worried I will just fall apart.

Dragged myself through family party today - I had to go, even though I was laid up in bed yesterday - as it was my dear Grandfather's 94th birthday or something - with assorted family members, some of whom I see all the time and some I hadn't seen for years. Couldn't summon up the enthusiasm necessary. Felt like a ghost or shadow of myself. Tried. Sat down. Tried harder.

Everything just seems bleak and frustrating and horrible.

And there are far too many doctors involved in my care now and I honestly do not know who to listen to first.

more uncertainty

So this week brings yet more medical uncertainty in the form of indeterminate high vaginal swab results... Sent off for private culture and have come back with flora which can bring problems, but don't always, and bringing me so much anxiety into the process. Last night I was on the computer all evening, after settling the kids, reading and reading and panicking... Tonight I have only distracted myself through watching really , really depressing TV, about a serial killing widower and then the global spread of incurable TB. Puts everything into perspective ???!

There is certainly abnormality and there are certainly signs of bugs which shouldn't be there but they can't identify which bugs or tell me with any degree of assurance whether or not this is all linked to my IC (it's probably a red herring, says my GP, but I chase these results like a blood hound because anything at all which might be treatable and might be connected is surely worth chasing!).

I am just so tired of being my own doctor, my own advocate.

I am having the swabs repeated, at my GP surgery and again privately, and then all the results will be compared by whichever doctor I have the most faith in at the time, and we will then see what we all think. In the meantime, I just have to sit with it. Not something I am very good at!

It's ok when I keep it in the hour, in the minute, and just focus on the children, or the housework, or resting, or reading, or writing, or whatever I am doing right now.... but when my mind starts to wander, I've had it.

And of course it is reasonable to be anxious, after this length of chronic illness. The problem is that the anxiety is becoming a real problem in itself.

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.

feedback

Random recent feedback on this blog:

'all she ever talks about is herself, and fuck she's a brilliant writer'.

'she thinks the things and says the things that I don't dare say about IC'

'I can't face reading it, I just can't; it makes me cry and sob and I have to turn the computer off'

'it's hysterically funny; it's so compelling; don't stop writing'.

These are four different comments I've had, two from total strangers, two from people I know, over the past week. It's strange how the same thing, the same words, can provoke completely different reactions.

Firstly of course I talk about myself. That. Is. What. This. Blog. Is. About.

If you want to read about tree monkeys, Prada or Naval History of WW2, I can't help you much.

This is about me. I say it , I say it, I'll say it again. If I bore you, don't read it.

But If you read it and I don't bore you, I'm so happy. If I make you laugh occasionally, or at least splutter, then that too is good.

If I shock you, great.

If I make you feel less alone if you too have chronic pain, that's the best thing of all.

fear

I am really scared, really scared, REALLY SCARED. I don't want to have further tests. I don't want to be a patient. I don't want to have self induced diareahha all day tomorrow. I don't want any of it to be happening. It has all been happening for too long; my resources to cope are depleted. I want it to STOP.

I miss being a proper mummy. I miss being ME.

je n'aime pas La France, mais ce n'est pas une probleme; je t'aime, tous mes lecteurs Francais; je t'aime beacoup

Now my French isn't brilliant. What I mean here is that although I don't like France, it doesn't matter, because I love you, all of my French readers, I love you all so much. I may possibly have said I love all my French writing tables, which would be a mistake, but then again if you are one of my growing number of French readers (78 in the past week?!) and you're reading this in translation, you will, I hope, forgive me. I don't think of you as a writing table at all.

I only don't like France only because every single trip I have made there has precipitated some disaster or caused its own version of Nightmare on Rainbowgirl's Street. However calm, romantic and free I have tried to feel, I have always been so relieved to return to England.

For example, the disastrous trip to Paris when I was 16 with my school nearly ended up with me arrested in the Red Light District for having broken the 'dorm curfew', getting horribly drunk and pretending I was the jazz singer booked for the evening; I think I even took the stage and began to sing before I either was caught or collapsed with alcohol poisoning. I remember a school contemporary trying to take my contact lenses out for me while I screamed at her that if she made me go blind I would sue her but it wouldn't matter because I'd be blind anyway (she got them out, all credit to her).

And my last horrible, sad and degrading trip to France in the late summer of 2012 was with my High and Mighty Ex Partner Mr Sleezeball and our 5 collective children (only 2 are mine, I hasten to add, and thank the Lord above he is the father of neither), where I spent most of the trip sickening for the illness I have been stuck with ever since, whilst pandering to this stupid English man's every whim ('je voudrais un omelette pour mon mari') - husband just made me feel better, the word just made it seem less ridiculous to be dragging all these reluctant (and in his case, oversized) children around a French port looking for an omelette and a small amount of red wine for my soon-to-be-ex partner and his bleeding colitis, whilst feeling increasingly panicky and ill myself. (I'm sure if he had been French, he'd have been more of a gentleman).

Oh and I trod in some human faeces by the side of the road and managed to smash the hire car. Perhaps these were omens that everything was about to go wrong. France was the backdrop for these events - and many others which I shall keep to myself (except the Hornets. I have to mention the Hornets. If you're one of my lovely French readers, please find a way to deal with these. They terrify me more than anything else in this world, except hospitals).

Don't get me wrong. I have no problem with the French. Well, you're a bit superior aren't you, but then, you have a right to be, on the whole. It is not stupid that the French don't like the English. They have sense!! We English are not very nice!! We are really crazy!! Come on!! We don't even like each other; we are constantly battling each other in these ridiculous, ill-disguised social classes ( a bit like India, only we haven't really got extensive slums yet that you can see from your 5* hotels, although they're coming). Or do they do that all over Europe too? Well, we do it here, and it's idiotic. We compete with each other all the time, we have absolutely no table manners, and yes, we are dreadfully unsophisticated.

So if you are French, and reading my blog regularly, hello! I like you, automatically, because you have recognised that I have a little (tiny) bit more sophistication, imagination and style than your average English fool.

Or perhaps you are reading it thinking 'you crazy chavvy English single mother, get a fucking life!!'

In which case I say, Vive La France! Vive La Revolution! Le Roi Est Mort; Vive Le Roi!

I'm just amazed that anyone in France is interested in me. Amazed, flattered, and a little confused (ooooh ... perhaps THAT is where all my so-called 'friends' from pre-illness times have gone... maybe they're all living in a commune together slagging me off.... ok paranoia now, stop right there.)

So it's horrible invasive camera tests down my throat and up my bum this week at the same time; I am terrified. I've had both , but never at the same time. I rang the NHS 'nurses' for advice. Their 'advice' was follow the instructions, come in on the day, try not to worry. Ask any questions when you get here. England. See what I mean? This is why I hate hospitals even more than Hornets, though it is a close run thing.

So, it'll be laxative central here on Tuesday; by Friday I should be back to my 'normal', increasingly agoraphobic self, with little memory of the point of leaving the house for over half an hour except for some very specific purpose but hopefully with some idea of why I had two episodes of rectal bleeding.

Wish me luck. Or tell me to fuck off, in French if you like.

Whatever floats your boat, mes amis. Whatever floats your boat (so long as it's not a canal boat, in which case I have plenty more choice words for you and your scummy parasitical infected waters, but not in this post).