It always feels like you’re up against something

Living with Inflammatory bowel disease (IBD) can feel like a relentless battle; you against your body, you against your mind.

You against time as the minutes tick by at an extraordinarily slow pace as you plead for the day to be over and night to arrive so it’s time for sleep. At the same time, your life is whizzing by and you feel like you’re getting left behind. Just standing immobilised with not enough strength or energy to plough forward.

You against society, their judgements and their lack of understanding as they eyeball you with disdain for using a disabled toilet, fussing over a menu, or wearing pyjamas in the middle of the day.

What are you to do when your body is waging war upon itself and you have literally no control?

Scared of making future plans

Being sick and close to death is scary, but being so close to life and not being able to live it is so much more terrifying.

Crohn’s disease and ulcerative colitis sufferers often have periods where the disease is active (a flare) and periods in which it is not (remission) which you would assume would mean that you have your freedom back, at least for a while. So surely you should make the most of these periods as they can often be short-lived, and few and far between? Do what you can when you can, so to speak?

But, constantly there in the back of your mind is the fear. The fear that all of this could be taken away from you with no warning. You could wake up tomorrow sick again, and be under the knife within the week. That’s my fear at least, based on previous experience of rapidly progressing disease…

I guess you’d expect that the longer the remission lasts, the safer you would feel. The more comfortable you would be in making plans and thinking of future adventures, but that’s often not the case. The longer you’re well the more anxious you become about being sick again, as though you must be about to run out of luck. Any time now.