england is sinking

... so I woke up this morning to hear Michael Eavis talking on the radio about how perhaps the west country farmland should just be abandoned to become swampland and left to the birds and the clouds and the crocodiles.. or maybe not crocodiles... though they have been around since dinosaurs, haven't they? I'm sure they'll outlive us this time, too...

At first I thought it was some kind of joke. And then I heard the weather forecast. There are areas of the s/w of England that have been underwater for over a month. Several villages which have become islands. One village which is totally cut off, accessible only by a makeshift boat crewed by some very hardy but increasingly pissed-off residents.

The government were going to declare it a state of emergency, then decided they wouldn't, because it's only Somerset... then decided something had better be done, so are sending some army troops down there. What precisely the army is going to do remains to be seen. More heavy rain forecast for the weekend... I'm glad I live on a (very steep and rather high) hill.

on a slightly brighter note...

My darling Pre-Pubescent beauty of a daughter, who continues to amaze and confuse me in equal measure, who lights up my life every time the darkness really descends, has got into her first choice school for next year. I am so happy about this; we all are.

Whatever happens to me, I know now that she will be ok. Or at least, that it is much less likely that she will join a gang and be pregnant at 15. No, she is going to have a brilliant start in life; an environment that is stimulating and safe at the same time; so many advantages. She will not be like me aged 13. She will not fuck up the way I did. And even if she does, there will be an army of people to pick her up. I'm not on my own anymore, even though her father is off on a beach in Thailand with his latest 'broody' girlfriend, even if something happened to my parents. PPB now has a huge, soft trampoline on which to bounce off from; not only bounce ... she can fly.

Our option two and three for schools were frankly not wonderful, so this result is just such a relief.

It is the first good thing that has happened to us since my little nephew was born.

It is a wonderful school - the right balance of academic and pastoral - they want you to do well, but also, more importantly, they want you to be happy and fulfilled - and I am so proud of her for all the hard work she put in to get there. She's even been awarded a scholarship for particular talent in an artistic subject area; that part doesn't surprise me one bit considering how talented she is and how hard she works. I'm glad she doesn't know I'm writing all this, or she'd be blushing; but she is, she's amazing.

And my Blue Eyed Boy, who holds my hand through these winter days, is loving piano and cricket in equal measure, and has just been moved into the top groups for Maths and Literacy at school, which is fab too. He has also just learnt to play monopoly, which he is delighted with and wants to do all the time. He reminds me so much of both my little brothers; particularly the one who has ended up really rich, which bodes well for my latter years (bladder bag or no bladder bag, BEB will look after me I'm sure).

I am constantly flabbergasted, proud and consoled by the pure survival instinct of my children. They are both little toughies; hardcore survivors. I suppose they have had to be. And that thought makes me a bit sad. But it shouldn't. Illness doesn't equate with blame. And considering all that is going on, they are doing just fine.

Some people say it's not healthy to live for your children; I would dispute that. Without them it is quite evident to me that I would not be here by now; they are my reason for carrying on. I think living through your children, expecting them to make up for your inadequacies, do the things you didn't do, travel down the paths you didn't take, or perhaps exactly the paths you did take and are prescriptive about... all of that is deeply unhealthy.

But for my children ? Right now, that's all it's for.

fair weather friends are no friends at all

oh and to those of you who have abandoned me, either suddenly or gradually, and decided I am 'too much hassle' because I am too depressing/melodramatic/boring/pathetic... but still sneakily read my blog... the ones who were there when I smiled, and partied, and went over the top, and made life exciting... the ones I needed when my health vanished but somehow you vanished too... you know who you are and how sad you are.

I would just like to say thank you, sincerely, because I do not want shits like you in my life now or ever, and neither do my children.

I wouldn't speak to you again if hell froze over.

So if /when I ever recover, don't ever bother darkening my door. I won't be opening it. I have learnt to survive without hypocrites in my life.

It is the middle of the night.

I cannot sleep.

In six hours I get up with the children.

This is becoming a pattern.

I sit, watch TV, try to eat; come to bed; wash; try to read; end up on computer reading about more and more theories surrounding IC.

Lately I think there must, must, must be some occult/lurking/hiding bacteria in my bladder causing these terrible symptoms, particularly due to the way the whole thing started, with cryptosporidium and with ecoli found initially.

I talk to people on forums; I research doctors and ways of culturing bacteria; I know far more than my own GP now, and perhaps more than my own consultant urologist.

This probably is dangerous.

It seems to me tonight that I shall need to travel to Staffordshire, to visit a Dr there who does something called 'Broth culture', searching for fastidious organisms. It is quite possible that the good old NHS have simply failed to culture what is there; that the bugs have hidden themselves in the lining and muscle of my bladder; and it will take a fine tooth comb to find them , metaphorically speaking that is...

Meanwhile I continue the Elmiron poison. Day whatever. Week 3. I feel like a ghost of myself. But I make myself get through the days, go through the motions, eat, be with the children, give out what I can to my few friends who do seem to be needing me still.... I miss those people whom this illness has removed from my life by whatever means. I miss them so much. But most of all, I miss my health. I am too young for this. I am not ready to be told that my bladder may eventually have to be removed as it will shrink and be covered with scar tissue. I am not ready to consider a 'bladder pacemaker'. These things were raised last week at the hospital. I have to believe there is an answer; we just haven't found it yet.

However much I might wish that I didn't have to fight this fight anymore, I'm not ready to give in.

elmiron nightmare

so I'm trying emptying the capsule into water and it is making me feel less sick, even though I feel like I am taking a kind of poison. but when you are in such constant pain as I am in my bladder/urethral system, you will try anything, and I fought so hard to get the medicine I am hesitant to give it up after not even two weeks. but it seems to be poisoning me from the inside.

mission for tomorrow is to get to the hospital to see the consultant - my father is coming with me - which is good, as he can speak for me when I cry, but bad, if he makes out that all this is somehow in my head (it isn't, it's in my bladder).

am only just hanging in there, for the sake of my children, who are being beautiful, brave and amazing. am doing my very best, but my best doesn't feel very good right now.

more later

poison me, cure me, elmiron day ten

The past three days have been total hell

I have found it hard to drag myself around the house, to do basic things for myself and for the children, to dress or leave the house impossible. just so exhausted. and of course depressed as well, but this is not depression doing this. this is the medication; though which medication I'm not not sure.

I have had to turn to one of my best mates who is totally wonderful and has been a huge help and also to my long-suffering (and don't they let me know it) parents.... in the end the GP came out to me this afternoon.... and her answer? side effects from 'one or other' medication - either the pain medication or the Elmiron - and 'worry and tears'. She was totally unhelpful and I felt worse after seeing her.

Family support good practically, Mum's been helping with school runs thank god, but emotionally they make me feel weak, useless and guilty.

I feel scared.

I don't know where this illness is going to lead me. I don't know if I am poisoning my body or starting to cure it. I don't know what the hell to do and there seems nowhere to turn. Am in the eighth circle of  hell, with my poor sweet beautiful children standing on the outside, watching.

Elmiron: day four. Panic. Don't Panic. Panic.

On Sunday we had one of those days today where we didn't leave the house. And actually we got a lot done: thank you cards; party invitations for PPB who is turning 11 (how did that happen?) on Wednesday and is happy with going to the little local theatre with a few friends on Friday night and then her best friend sleeping over; music practice; a lovely film that we'd been saving to watch all together. The kids even played playmobil together for more than an hour letting me lie down and read the paper.

A couple of years back, it would have been a happy day.

Well, actually, it wouldn't, because my head would no doubt have been in a mess over some stupid man or other whom I was desperately in love with but who didn't love me enough/the right way/ was using me/planning to leave me/fuck me over/delete as appropriate... at the time, two years ago, it would have been Mr Sleezeball, the ageing writer who thought he was God's gift to womankind but was in fact just a superficial, self-important, arrogant loser, not worth my time and attention, not even that good in bed... who started me off on this rollercoaster of illness in the first place, and I would not have appreciated what I had.

If I ever, EVER, get better, I will remember these thoughts... Because now, if I didn't have IC, a day like Sunday would be lovely. Had I not been feeling so ill, just hanging out with the kids at home sounds great. Instead it was bearable; with toilet trips twice an hour, and taking it really easy lying down as often as possible with a hot water bottle whilst trying to disguise it as part of a 'game' or having a rest watching the movie.

Being the only adult might seem a bit strange anyway, if you are used to being part of a couple; but I am SO used to it that actually it sometimes seems strange at the moment hanging out with other adults. Often it is just me and the children; or me, my children and my parents. The rats have left the sinking ship and only a few loyal supporters locally remain. My old, dear friends and relatives are of course still 'there', but 'there' is, increasingly, across the Atlantic Ocean, or in Australia, or some other faraway country, or city (even London feels like the Moon in my mind when I consider the journey there and back).

All in all Sunday was more bearable than Saturday, when PPB flew into a rage after a school entrance exam and swore at me and threw a glass (she later claimed to think it was plastic) down the stairs, then locking herself in the bathroom until I was in tears in pain outside ('wee in the garden if you have to; why not?'). Why am I giving this child any birthday presents? Why am I not sending her off to Boot Camp in the USA - or is that forbidden until they actually reach 13?! Joking aside, I love her dearly and would lay down my life for her, but my god she pushes my buttons. It turned out she was really upset because the Maths paper was hard, and this is the school she really wants to go to, assuming we get the necessary funding / scholarships as well. I can relate to that, but the behaviour was just so out there, like she used to act. Just like I used to act, come to think of it, though not til I was a teenager. They grow up faster these days.

So I started the Elmiron Saturday first thing. And now it is Tuesday evening. As yet, nothing much has happened. Slightly more pain yesterday; slightly less today. Very late period, perhaps connected to the illness in some way although we explored the hormonal angle and the doctors decided I was 'fine' on that level; perhaps it is all the stress. Watch this space. My body will just be processing this new toxin and starting to ask: 'what is this??' and deciding how to react. I am going to keep doing the acupuncture weekly, and keep on with the vitamins and supplements I've been taking, plus some extra iron as the doctor discovered in the pre-treatment blood tests that I'm anaemic.

I'm just going to try to keep calm and not panic ( or should that be 'keep calm and keep taking the tablets'). As Tracey Emin says: Panic. Don't Panic. Panic. Don't Panic. Panic .......

Adopting this stoic attitude might be difficult if the hair loss comes, or I start bleeding rectally, or my liver enzymes shoot up, but I will cross that bridge if and when it decides to appear. In the meantime, one foot in front of the next. Dealing with intense pain, intense tiredness and increasing depression from the chronic-ness of the chronic nature of this illness, one hour at a time. A dear old friend the other day reminded me of her close friend who died of cancer; she was our contemporary at university and such a cool person, and so inspiring quite apart from her illness; but her bravery towards the end was quite remarkable. She took every new blow as it came and meanwhile she continued to enjoy the sparkles in the rain. I hope I learn now to do this. And after all - I feel with guilt - why guilt? - this is not cancer; not now; probably not ever connected. It is the slow plodding onwards of life at a different, reduced, afflicted pace.

For today, it's time to do my children's homework with them and make their dinner and give them some Mummy time. For tonight, ice my daughter's birthday cake and finish wrapping her presents (the last year, I suspect, she will ever ask for Sylvanian families...still haven't given way on the mobile phone or I-things... proud of myself, but we can't hold out much longer can we Jamie Oliver??) and perhaps blow up some balloons and lay out a special birthday breakfast...

The only way to find the energy for this is not to think further than the next hour, or half hour ahead.

This is a trick I learnt at school, when hating it so much that my friend Em and I used to 'count the 5 minuteses' until the end of the lesson/ day.

Thank God I couldn't see forwards twenty years; that I couldn't see how all of that energy and work and enthusiasm and life in my teens and twenties would have simply been for this: mid-thirties, single mother, chronic pain. Never where I expected to be.

And yet I have two beautiful children out of this hell. I have two beautiful children to protect from my own personal hell, and I do it quite well, most of the time.

Who knows how the Elmiron will work? But this is not the end. It is somewhere in the middle. NOT the end, however dark my days become. If it is not over, it is not the end.

When you are going through hell, as some smug bastard or other once said, you just have to keep going.