Sorry in advance, this is a bit of a rant, but no one I talk to about this seems to ‘get it’ so I thought I’d try here. Any ideas, similar experiences appreciated – would love to know I’m not alone! – and if anyone has some ideas to help that would be great!!!
So basically my bladder is giving me the crappers!
Can’t decide weather to control itself (too well, retention) or not at all (ops! I think I sat in a puddle! Fancy that!)
It was one of my first symptoms in Jan’12 (pre Dx) (with walking funny) and then disappeared nicely when my ‘CIS’ resolved. Reappeared in Aug’12 with my second ‘relapse’ and has stayed since. Got worse with relapse #3 (Nov’12). Everything else from relapse 3 is improved (was in a wheelchair named Jaws) now walking drunk, so much better, relatively, but MY BLOODY BLADDER!!!!
Up 6x last night (no joke, pen in bathroom) despite oxybutynin, which I started 2months ago (initially symptoms better, now worsening again, especially since last Tuesday). I tried going off the oxybutynin, just to see what I am really like: much worse!
During the day I am either running to the toilet all the time, or incontinent all together. I am 27! Know this doesn’t matter, but ‘being incontinent’ was not on my pre-30 to do list (neither was MS actually).
Hate hate hate it.
So so so much.
Am pulling my hair out and so over it!
And not helped that I am constantly tired from being up all night like a guy with a prostrate issue, I know my coping mechanisms are down from fatigue. And I have an outside loo, which doesn’t help.
Saw my neurologist a month ago, he started throwing around the word ‘catheter’ which I balked at. Have only been diagnosed 5months. Bit early for that.
Though have been waddling around in incontinence pads for 6months now… So attractive…
But I am finding it exhausting physically, draining emotionally, and my self image is down the toilet (or on the chair, bus, car, shoes… Actually, I don’t know where my self image is anymore)
What do other people out there do??
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