The Price of Dignity

MS is a crappy disease, literally. When I was a child, I would notice little adverts on the back of the paper, telling me about the charity for MS and I would read about this crippling disease, which caused double incontinence and complete misery.  I never thought I would have it.  Fast forward fifty years and I am in it, living it every day.  It happens just like the adverts said and I’m incontinent.  My bladder and my bowels don’t work.  I have a catheter, which helps me control my urine function and I use an anal irrigation system every day to control my bowels.  I have recently been told that this @peristeensystem, which is apparently, according to the suppliers, @coloplast, is supposed to last three months.  They need to be in my shoes for a mile! In an ideal world it would last twelve weeks, but this world is not ideal.  We are all different, each of us has our own ‘rhythms’ and @coloplast’s policy does not accommodate my own ‘rhythm’.

I have raised this issue with my general practitioner, who has advised me that perhaps I need to buy extra systems in order to meet my requirements, but when I said that I needed extra systems to take away with me, in case anything was broken, or when I travel, he looked at me, askance and asked, “How often do you go away?” which isn’t actually any of their business and seemed genuinely surprised that an MS warrior would dare to go ‘away’.  Whilst I could indeed purchase these items, why the hell should I?

About I'M Still me.....

I'm an MS warrior and writer who enjoys Prosecco, chocolate, looking glamorous and who will NEVER go grey!
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