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This blog is about coping with the strains of chronic illness whilst bringing up two beautiful children; it's also about the stresses of bringing up two children on your own while suffering with a chronic ongoing health problem which is at times very severe.... you can look at it either way. It's about being a single mum; it's about raising awareness of Interstitial Cystitis; it's about helping me cope. Writing this blog is beginning to bring me back to who I really am, who I really always was, before the single motherhood took over full time, before the illness set in.... a writer. I've always written, from essays to stories to journalism. This is the first thing I've written in years. It's helping me regain my confidence. PLEASE DO LEAVE ME COMMENTS AFTER MY POSTS! I'd genuinely love to hear your views on my (sometimes controversial) opinions. Thank you for taking the time to read. It would be great if you could comment so I know that you've been here and what you think.

Tuesday 14 January 2014

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.



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