Living with a chronic condition

So a few days have passed and I still wasn’t sure what I wanted to write about first. I really fought the temptation to do just what I’m about to do, that is write about living with a chronic condition. I prefer to look at life through rose-tinted spectacles, I don’t like dwelling on the negative, I like to push on, push further.

But then two things happened which to me seemed to be too much of a coincidence:
1. A dear friend who lives miles away and who I’ve only recently reconnected with announced that she has just been diagnosed with MS. She’s a go-getter, a great woman, and she’s seizing the bull by the horns.
2. I came across this post today of this wonderful, wonderful kid, Seth, living with SCID (also known as “bubble boy” disease).

And then it hit me – they, like me, are living with a debilitating immune disorder. And they’re talking about it – they’re DOING things with it.

So here goes – I have Ulcerative Colitis. I was diagnosed in 2008 just two weeks into a new job – the shame! (I’m still at the same place of work, in no short measure because they’ve been incredibly supportive of my condition EDIT: I recently changed job and they’re just as understanding I’m currently on a career break, undertaking a new Masters degree, a dream I’ve had for a while). It’s hard to explain UC to someone who has never experienced it, directly or indirectly. It’s an invisible disease. It doesn’t show on the outside. But this doesn’t make it any less devastating and destroying. I’m often in pain, my nights are interrupted by bathroom visits at least once, often twice, with each visit lasting around 40 minutes to one hour. I’ve stopped going to places where there is only one bathroom (no more wine bars for me), the theatre is out of the question, and playgrounds with my two four year old are a no-go. My energy levels recently fell to the floor, something I thought was due to my highly energetic son. Turns out he’s not to blame (sorry, kiddo!), at least not fully. I’m severely anemic it seems. But really, it’s the invisibility of it that gets to me the most, fighting it alone. Lucky for me my +1 is of the incredibly supportive type, I shudder to think how those like me without someone to count on get through their days.

So now, under a new doctor who I have high hopes for, I’m back on steroids. I know this means I may balloon back up, just as I had managed to shake off two dress sizes. Steroid weight is SO hard to get rid of. But hey, if it means I can sleep a full night and roll around with my kid instead of falling asleep on the sofa, bring it on. At least for now.

EDIT: Update – I’ve had a TWO life-altering operationS. Check this out and this.

Keep watching.

10 thoughts on “Living with a chronic condition

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