It just so happens that this week is Crohns and Colitis Awareness Week (1-7th Dec), and it also happens to mark the start of my second ever UC flare…so in this week of awareness, I am suddenly very acutely aware of my illness, and all the delights that come with it. Oh the irony!
Up until now, my tablets have kept a tight lid on the disruptions of my bowels and stopped me from feeling that old familiar pain, which creeps up and takes your breath away. Over a week ago, I ran out of tablets and went about ordering more from the Lloyds online prescription service, which has never caused me any issues before. For reasons unknown, this order got messed up twice, and by the time the next batch arrived, I’d been a week and a half without any medication. Cue the flare!
Having gone a weekend or so without tablets before, I didn’t think it would be an issue, but obviously I tested my limits just that little bit too far (through no intention to do so), and I now feel like I’m back to square one almost. Angry doesn’t really come close.
I’ve spent the last 48 hours moping about the house, crying, being inconsolable about the fact my life will never be ‘simple’ again, and that I’ll never be able to look forward to the excitement of Christmas, without worrying my bottom will have other plans to ruin my fun.
You begin stamping on the fast forward button in your head, and imagining a beautiful wedding dress soiled with blood and tears, a child who shares the same incurable illness, holidays stuck in a hotel room, the operations, the bed rest, the helplessness and the possibility of being close to death. All this might sound dramatic, but when you’re living with an ever-evolving, unfeeling, unpredictable disease like this, nothing is beyond the realm of possibility.
Then I started to think about the Crohns and Colitis website, really read it (rather than pretending I didn’t need this kind of support). I started to take action on things which ARE within my control, like becoming a member which gives me a special loo pass and key (when they arrive), and also annual mags and events invites, which will hopefully give me the chance to hear from other people with the same illness.
I made a poster to raise awareness for this invisible illness, and I set a temporary profile picture on Facebook to tell pretty much everyone I know, that it’s important to have understanding for people with conditions like mine…something I never thought I’d do in a million years. Up until now only a handful of people really knew about my UC.
What really helped though was reading the stories of others on the Crohns and Colitis FB page itself, something I’d not really looked at before. Even alone in bed, feeling a bit self-pitying and hopeless, the words of those people has given me hope. In particular this article which was exactly what I needed to read this week.
Everything Bryony Hopkins said struck a chord with me, and it reminded me that this illness only gets the better of you if you let it. Yes there will be dark days, days where you can’t get up and days where you want nothing more than to turn the clock back and be ‘normal’ again. But actually, having this illness makes us stronger, helps us deal with the shit life throws at us, and encourages us to grab life by the horns and strive to do all the things we always wanted to.
So instead of focusing on the fact my UC came back (most likely) because of a monumental pharmacy cock-up this week, I’m going to focus on the fact that in that same week, these things also happened:
- I got the promotion that I’ve been working towards for over a year
- My boyfriend lovingly looked after me when the flare hit, and weathered the storm of tears which came uncontrollably when I got home from work
- Someone I love bought me flowers
- It’s December
- I joined Crohns and Colitis as a full member
- I told pretty much everyone I know about my illness and they’ve all been super supportive
- And I got a £240 council tax rebate – so every cloud! 🙂
So to any UC or IBD readers out there, chin up! We’ll get through it together. #ChronsColitisAndMe #ChronsColitisAndUs