It's that time of the year when I stop talking about music and start talking about my guts.
It's Crohn's & Colitis Awareness Week, and I think chatting about Inflammatory Bowel Disease is a) something I do all the time now, and b) more important than ever. I'm still recovering from a recent Ulcerative Colitis relapse, so the difficulties of living with the disease are still quite raw for me.
If you're unfamiliar with UC, it's a chronic and unpredictable bowel disease (often mistaken for IBS) which can vary in severity and symptoms from patient to patient. The symptoms are gross and painful, but the disease itself is almost invisible. Whilst I look remarkably well, I'm actually screaming on the inside (kind of like Rose at the beginning of Titanic).
Like all chronic illnesses, Ulcerative Colitis makes you feel awful (physically and emotionally) and the impact it has on your loved ones is pretty dire too. With the right attitude however, you can make a massive difference to someone's recovery. If you know someone with UC or IBD, here are a few things you can do to help them through that poxy relapse...
Don't mention weight gain/loss
A few weeks ago, I had hamster cheeks and puffy eyelids (thank you, steroids). Shortly after that, I got food poisoning and an infection and lost half a stone (thank you, dodgy prawns).
Weight fluctuation is something UC sufferers must learn to live with, and I spend a lot of my time wishing steroids didn't bloat me out and that that my crappy suppressed immune system would allow me to be consistently good looking. Losing your appetite and having no energy also wreaks havoc on your emotional well-being.
Society is image obsessed, and even if you don't have a chronic illness it's hard to avoid comments about your weight (even when they're meant with the best intentions). Let's all try to be better people, and ask each other better, more interesting questions next time we meet up.
If I'm wearing a sassy crop top that flaunts my dazzling abs, however, go right ahead and compliment those...
Let us freak out once in a while
I am screened every 3-5 years for bowel cancer with a colonoscopy/endoscopy procedure.
I have an increased risk of developing skin cancer because I take Azathioprine (so I need to be extra careful when sitting out in the sun).
If my UC becomes uncontrollable in later life, I may need a stoma or some form of operation to remove part, or all of my bowel.
Sure, they're all just 'risks' and 'possibilities' at the moment - but when things start to flare up again it's difficult not to panic and assume the absolute worst. I am not ready for any of these things (not that anyone ever is?) and I cried typing some of them out.
So let me scream "WHY GOD, WHY?!" in to the sky for a bit, before slapping some sense in to me, and putting the kettle on and sharing a consolatory cuppa with me.
Stay out of the bathroom (and make sure the lock's working, and there's toilet paper)
When nature calls, we all have to answer. Bathroom time is private time, and it shouldn't be interrupted...unless you live with someone who has UC.
I still live at home (#GrownUp) and there's six of us sharing two bathrooms, so there's always one free if I'm not feeling well. Before I was diagnosed, however, we only had one bathroom. During that time, I interrupted a lot of bubble baths, teeth-brushing sessions, and hurried urinations.
If I'm staying over at a friend's house however, my overbearing guilt complex means I feel a genuine sense of unease at the thought of having to tell the house owner to get out of the bathroom in the house that they own because their guest needs it.
Friends have reassured me this isn't something I need to worry about when I stay with them, but I can't help but panic about it anyway. Also, some people's idea of 'quick' is not the same as mine . Their "just a sec" is actually another 10 minutes - 10 minutes I don't really have.
Don't write me off if I have to cancel plans (please?)
There's nothing I love more than going to gigs, talking about bands, and drinking like a fish until the early hours. This is impossible when I'm ill, and it breaks my heart.
I don't want to cancel tonight's plans, and I really want to book that holiday next month; but I have to postpone both because I don't know if I'll be well enough. At least you can find someone else to go with. I'll just be sitting here, playing Jeff Buckley's Grace on repeat, trying not to cry about all the things I'm missing out on.
Please be gracious when I cancel last minute, and please be patient when I say I will rearrange that drink as soon as I'm back on top again.
Patience is a virtue you practice to perfection, when you're suffering with IBD and a random infection. (you get quite good at poetry, too).
Laugh
Probably the most important point.
Living with and talking about Ulcerative Colitis is painful, and whilst azathioprine and steroids ease the symptoms; laughter is still a necessary and highly effective medicine.
No-one likes discussing cameras being shoved up people's backsides, but if you can crack (no pun intended) a stupid joke about a colonoscopy, people are generally more interested in hearing about your 'dignity shorts'.
The irony of 'dignity shorts' is that at any moment, they can betray their namesake. They're made of medical paper, with a conveniently large slit at the back that rests casually between your two buttocks. When angled the wrong way (or if there's a crafty breeze in that hospital corridor) there's a high chance of everyone getting a shot of your bare naked arse. I suppose I could get embarrassed about this, but let's face it; unintentional nudity is hilarious (and I do have a lovely arse).
Whilst being chronically ill isn't really that funny, let's just pretend it is and make endless jokes about it. Laugh along with me, but please don't laugh at my pillsbury dough boy steroid face...
Like many people who live with UC, I am exceptionally good at masking some of the symptoms, so you may not even know what your friend or loved one is going through. If you'd like to find out more about how you can support those suffering with Ulcerative Colitis and other forms of Inflammatory Bowel Disease, visit the Crohn's & Colitis UK website.