My IC came suddenly one November evening last year. Sudden pain one evening when going to the loo before bed. Then increasing symptoms over a few days, but it was a couple of weeks before the GP would take it seriously and even start me on any (useless) antibiotics.
Up until then my bladder had been completely normal, for years. A decade previously I'd had a small polyp removed which had been causing bacterial infections, and eventually a kidney infection; but for years and years I had only suffered the occasional UTI, usually related to sex and easily treated with a course of antibiotics.
So I was not particularly worried at first; more frustrated. Not another health issue, I thought. For two previous months I had been severely ill with stomach and bowel problems, a combination of severe gastritis (inflammation, interestingly, of the lining of the stomach) and severe cryptosporidium (a nasty parasite caught from the nasty canal water of my nasty ex partner's nasty boat
). I was dangerously underweight. I assumed this UTI would just go away and was obviously due to some bacteria from recent diareahha. And maybe that's what had happened, at first. I'd just had the second of two full-on CT scans as I'd lost so much weight people were scared I had cancer as I had a 'shadow' round the stomach area which turned out to be 'nothing' after all; and the second CT scan had involved drinking a large amount of dye fluid which had given me a bad upset stomach. Sure enough, ecoli did come back on the first test, though not the dipstick only the culture; a couple more were indeterminate -mixed culture. Then they were all clear, and have remained clear. The dipstick tests were always clear, which I find odd bearing in mind the state of my bladder.
And so the nightmare began. For weeks, months, I was convinced it was only a case of finding the 'right' antibiotic. Then I was convinced it was ureaplasma, mycoplasma, chlamydia... it was none of these things. No bacteria. I had to come to terms, with great difficulty, after the cystoscopy and biopsy, with the (semi?) permanent nature of this disease. It's been almost a year now. What a journey. I would not wish this on my worst enemy. It's easily the most difficult thing I've lived through; and I've lived through a lot. And yet it is teaching me so much, in such a stark way, about what and who is/isn't important in my life now.
Did I get IC from bacteria? Perhaps initially. Did I get IC from being run down? Yes, my immune system was fucked. Did I get IC because I was furious with my ex? Who knows. Did I get IC because of a generalised inflammation of my internal organs? This is what I most believe.
So now I'm really going for the anti-inflamatory approach; in all areas of my life. A lovely lady on the IC network pointed out to me the difference betweeen anger and bitterness. I am not bitter; I refuse to be. IC will not break my spirit; I will not let it. I will fight for my moments of joy and for the life I've created; but my God, do we have to fight hard.
Firstly you are not your disease nor the symptoms.. you're a fighter Your soul is strong.. it isn't easy to go through what you are experiencing and I cant even possibly imagine but there's this one thing I can say is.. whenever something happens to us or in our lives we usually feel bad about it. how about we think of it as a learning experience like we are supposed to learn something from it.. maybe connect with our inner most self! Anger is a very normal emotion and that's perfectly fine and no you're not bitter definitely not. I hope you're getting the perfect treatment in this current situation :)
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