So I have been on the Elmiron for almost a month now, and no noticeable improvement in my pain, frequency, urgency or how many times I have to get up in the night for the lavatory...
I am persevering with it because it has to be worth it, after everything I went through to get it. But it is draining the life out of me; a bit like Frodo wearing the ring; it feels like inhabiting a shadow land.
But all the while I'm thinking if there is a chance, just a chance, that this medication can help my bladder, then I'm in.
In the two big clinical trials, 38% of women noticed a discernible improvement around the 3 month mark, as opposed to around 16% on the placebo drug. This was what I based my decision to take it on.
I am sick to my stomach; sometimes I just want to eat and eat, other times I cannot eat a thing. My hair is thinning, though I am managing to disguise that. I am exhausted to the very core of my bones; some days, like today, I cannot leave the house. Tomorrow I have to do the school run in the morning as I have promised my son, so cannot ask anyone else, plus I have blood tests and a plan to have a cuppa with one of my best friends at her house. So I will have to drag myself around. The next day, I see my gynaecologist. Because my periods have stopped.
My body is no longer working. I am coming to accept that and yet I rage and rage against it in my mind, hence this next round of tests to search and search for some lurking guilty bacteria, hiding deep inside the lining of my bladder, who is responsible for this and who we can gun down with our machine guns. But I know in my heart that I may have to accept that there is no answer, and this is just my life now. And not everything is lost; but my health was the most precious thing I had, and I didn't even realise it.
I miss being well. I miss just running around with the kids; not having to time my trips to town or my trips anywhere according to proximity to a toilet. I miss being free from pain. I miss the luxury of feeling my emotions, just my emotions, without my physical body dominating.
I don't know where all this is going to end, and that uncertainty, which should perhaps give me hope, scares me most of all.
About Me
- rainbowgirl
- 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.
No comments:
Post a Comment
Over to you!
So please let me know what you think, or ask me anything you would like to know.
I always appreciate honest feedback.