nic piper
nic piper

tales from the board

Well aware.


It's Crohn's and Colitis Awareness Week!! Whoop whoop! Come on...hang out your intestine shaped bunting (incomplete), strap on your best colostomy bag and crack on with the low fibre buffet! YEAH!

I thought I'd write some things here as I don't really talk about Crohn's, or at least the way it affects me, very often.  I was diagnosed in 2001 during my last year of uni - young, free and idiotic.  The first op was a breeze and for the next year or so I was fine.  Then it came back and stayed. I had a few more ops, each a bit bigger than the last, each chipping away at my bowel, mood and way of life.  By the time the fourth one came around, plus all the added extra ops that appeared with it I think I'd had enough.  Thing is though, when you've got no option to avoid getting chopped up and you know that it will fix you for a while then the 'had enough' bit is null and void.  You've got to do it.

I find this stuff particularly hard to do.  I don't like talking about myself which resulted in me deleting this post 3 times before I decided to just get on with it.  1st one started "I hate people who whinge and whine about..." the 2nd started "By writing this self centred blog I will make no difference to..." and the 3rd draft was along the lines of "Some days the very best you can do is not s*@t yourself in public...", none of which felt appropriate.  I toyed with drawing cartoons for a "Things You Shouldn't Say to a Crohn's Disease Sufferer" type thing but in all honesty, if you noticed I had Crohn's and then talked to me about it I'd be surprised then happy to tell you the ins and outs of how my bowel resembles a pirated VHS; fuzzy, terrible sound with several recorded toilet trips per hour.

I will in this instance, this once and once only, tell you exactly how Crohn's disease makes me feel;

It hurts. On a daily basis the level of discomfort changes but it still really hurts.

I'm always tired, always.  "Just got out of bed?" Yes, smart arse.  I've almost always 'just got out of bed' not because I'm a lazy bugger (a bit because I'm a lazy bugger) but mainly because I've been asleep.  I try my best (sometimes to the detriment of my health) to do normal amounts of work and life and stuff but it doesn't really work.  When an illness robs you of the ability to do things normally it can become annoying.

It takes your self confidence around the back and gives it a really hard kicking.  I look like a character from a Funnybones book at the best of times but when it flares up and I lose weight it gets ridiculous.  I thought my beard was getting longer last week but I think it might've been my face shrinking.  Not to mention the gothic horror presented to me whenever I take my shirt off.  Like a face on a xylophone.  Now imagine that in a swimming pool...yeah, not nice...  Dates. Dating?  I don't know, no...yes, but...I mean...move on.

I hate it.  I have to deal with it but don't think for a second that any number of jokes or dismissive remarks that I make about it means that I don't hate it, because I really do.  Having said that, I never want to avoid it because that would be silly.  Ignoring things never works.  So feel free to engage with me about how your nan's cat has it or how your cousin cured it with a mixture of herbs and liberal use of Radox, tell me how the Daily Mail thinks it's all down to how much time I spend around Wifi and please keep telling me all the things I should be eating according to something you watched on The One Show because I will always listen to you and I will always appreciate that you want to help me.  Promise.

I get frustrated by people who have a disregard for their health.  Don't get me wrong, lots of people have all kinds of health issues that they can't avoid but people who drink themselves stupid every weekend or smoke a lot or just wont stop eating (notice the 'won't' there, not 'can't'. There's a difference.).  Those people that do have a choice and choose not to help themselves. That really frustrates me.  My big brother is losing lbs and lbs at the moment and I couldn't be more proud of him.  3 kids and a wife to look after.  You've got a choice to stay healthy.  I'd take it.

I'm grateful.  Not for all the robbed and wasted hours of life or really stingy weekly injections, not for the garage full of medication or the brutal lack of strawberries in my life but for the scope it's given me.  For years now the little things haven't mattered.  I watch people get their knickers in such a twist about things that just don't matter.  Having nearly floated off to the big drawing board in the sky back in 2007 none of it matters.  Being ill gives you scope to see what you need to care about and what you really need to focus on.  Helps you to prioritise a bit.  I like that.

I'm stopping there.  That's only a brief slice of how it makes me feel but I'm not going on as we all have lives to lead right?!  I am more aware of Crohn's this Crohn's Awareness Week as I am in the midst of a particularly bad flare up, one which has reduced my diet down to some pungent formula being constantly pumped into me through a valve in my stomach, one which has caused me to take days off, call hospitals and think seriously about what's coming next.  I'm very aware.  But I'll just get on with it the only way I know; by cracking a few jokes, being dismissive and dropping more pills than a one armed pharmacist.

See, I did it there... xx

Next time: Advent Explanations and arty stuff. 


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