'Living' with Inflammatory Bowel Disease can sometimes 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 and time for sleep, yet at the same time your life is whizzing by and you feel as though you're just standing immobilised with not enough strength or energy to plough forward whilst not being willing to surrender and turn back.
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?
Being sick and close to death is scary but personally I think that being so close to life but not able to live it is much more terrifying.
Crohn's Disease and Ulcerative Colitis sufferers often have periods where 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 so 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 literally wake up tomorrow sick again and be under the knife within the week.
You'd expect that the longer the remission lasts, the safer you would feel and 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'?
I have never been keen on letting people become involved in my life as I feel that this is my burden to carry. I am not a pleasant 'sick person'. I do what I need to do and then I like to shut off, and rest, and not be disturbed, or nagged, or told how to feel better or what to eat or to go to sleep when I'm already begging for sleep to take me while the sandman ignores my pleas. I am irritated (and irritating), irrational, snappy, angry at everything and nothing and functioning purely on autopilot, and then comes the real 'can't be medicated better' sickness that requires surgery and long hospital stays. The fear and the sadness in the eyes of the people that care about you is too much for me to handle and guilt is not something I want more of.
How do we release ourselves from this constant fear of what if?
What if I spend this money but then I need time off work?
What if they can't handle me when I'm sick?
What if I am not well enough to take that holiday?
What if they leave when I need them the most?
Or worse still, what if they stay out of guilt?
How do we 'live' if we're in constant fear that our 'life' might be taken away?