About Me

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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.

Monday 23 December 2013

count your blessings even if they're small; and don't worry if it's all a bit fake

today I have managed:

to wrap presents with my son, giggling over it and watching Christmas movies

to listen to the wind and rain daydreaming about what might have been and what, in some strange twist of fate, may still be

to go slowly and give myself  a chance to rest even for ten minutes

to eat properly : three meals: breakfast, lunch and dinner. cereal, sandwiches, rice and vegetables.

to keep myself in the day and not panic about life three, six or twelve months down the line

to feel a tiny bit of the childhood excitement about Christmas.

What is it we were ever looking forward to? It was a feeling of our dreams coming true.

Christmas was always as much about Santa as about Jesus, for me. And they were/are/could be one and the same (my kids think they are probably friends).

It's about your worries ending and your wishes becoming reality and the validation that you have indeed been 'good' - a good Christian, doing what you can for the poor and meek and homeless giving all your change in the collection box in church every Sunday, even if you then drive off to your lovely house on the outskirts of town in your 4by4 and god forbid you ever meet their eye if you see them on the street; a good child, even if you know you've argued with your siblings every single day and you've done little things you know are wrong, stealing little things at school or lying to your parents about things you know are wrong; the very fact that Santa comes and fills your stocking some how makes it all ok again; a good person, because Christ is risen.

It still rings a bit hollow to me, if I am total honest.

And yet I'll take it, I'll take it now; because I'll take any hope on offer right now; even if the hope seems pale and wan. I'll take any of it because otherwise there is just total and utter bleak, black, dark, sinking, shattering despair.

So. Happy Christmas :)

Sunday 22 December 2013

still here, just about

So it's three days before Christmas, I'm in bed, in chronic pain, waiting for my brother to bring my little boy home. I haven't wrapped any presents and Santa had better actually be real or my kids are in trouble; I'm in too much pain at the moment even to crawl down the stairs to put the Christmas tree lights on, though I expect I will make myself.

Things have got to a really dire point for me.

I am in so much daily and nightly pain and discomfort, even on a strong Fentanyl patch and top up Tramadol.

The acupuncture seems to have done very little.

The Elmiron has been given the go ahead, so I should be happy about that, as it was such a big battle, but it's funny how your mind works - I'm now terrified about the side effects.

My consultant thinks my Interstitial Cystitis has got worse and wants to do another cystoscopy later in 2014 once we have given the Elmiron 3 to 6 months - assuming it doesn't destroy my liver / make all my hair fall out in clumps.... If the Elmiron does work, as I know it can from reading other people's stories, well, it would be a miracle.

But miracles don't happen to me.

This Christmas, I'm just worried that my misery and illness is going to ruin the time for everyone else. Everybody around me seems to have reached that point where they are just too exhausted with me to even feel sympathy or compassion anymore. My godfather the other day told me if I were only happier, people would like me more. Ha! Anyone with IC will understand the irony of that one.

So down the stairs I struggle. More soon.