For me and I expect for most people with UC, each morning brings a series of firsts and the nervousness that comes with them.
Let me explain:
- The first poo or loo visit – Will it hurt? Will there be blood?
- The first few hours of the morning – Will there be cramps? Or bloating? Or urgency?
- The first meals of the day – Will there be cramps? Pain or sickness and anxiety?
Not the ‘leap out of bed and sing to the birds through the window’ style of morning which I’m sure we’d all love, but none the less – a day without any of those signals is as good as any.
I’ve spent most of this year hoping I wouldn’t see any of these things, and for the most part I’ve been lucky – but I’ve still had down days. Unexpected days where you feel like you’re doing all you can, taking your meds, trying to relax and look after yourself – but nothing helps. Those are the most depressing days.
What I’ve realised is that days like these can lead you to become a bit of a boring bastard (for want of a better term). They can make you shy away from life, and from living it the way you want to.
Your brain screams….
STAY INSIDE. EAT ONLY ORGANIC, NATURAL LOW ACID FOODS. DON’T DRINK ANY ALCOHOL. DON’T SOCIALIZE. DON’T GO TO UNFAMILIAR PLACES. DON’T GO TO WORK. DON’T TRY. DON’T HAVE ANY FUN OF ANY SODDING KIND….
It’s easy to listen to this voice, but despite being under some dark clouds recently I’ve realised the importance of not letting these days get the better of you. Not letting them defeat the person you want to be.
In the last two months I’ve managed to…
- Go to NYC for the first time ever and explore a crazy city and all its glory
- Write a reading for my brother’s wedding and read it aloud in front of everyone at the ceremony (whilst flaring and fighting hideous anxiety attacks)
- Go to a hen weekend in the countryside where we all slept on camp beds and HAD to use outside loos – an area of serious anxiety for anyone with UC I’m sure
- Go to London and revisit my old stomping grounds – which involved tequilla slammers in Shoreditch and staying out eating pizza with prosecco (oh how I miss buckets of cool cool bubbly prosecco…wipes dribble from corner of mouth)
These aren’t things I’m seeking any kind of applause for, they’re just normal everyday things which thousands of people do all the time – but for someone with UC these things become far from ‘the norm’ – or at least they have for me now.
I worry about travelling and getting sick abroad, I worry about weekends away with people who might judge me for my condition and not accept me as I am, I worry about drinking and giving myself a flare up. I worry about ALL sorts and sometimes it’s hard to stop.
However, the good news is that whilst UC is unpredictable and the worry first thing in the morning will probably stay with me for some time – equally, the morning after my tequila shots and pizza, I was fine, during the trip to NYC, I was fine and during the hen weekend, I was fine.
I’m not advising readers with UC to throw caution to the wind entirely and sack off all medical advice, but sometimes you just NEED to, in order to be you and to do something regardless of the fallout. Maybe that sounds reckless to those who are more advanced with their UC than myself, but having those experiences recently has shown me that the person I was two years ago isn’t dead and gone. She can’t handle her drink like she used to, and maybe she won’t readily gorge on as much fried food as before – but she’s there.
Most importantly I’ve learnt that the alcohol, the food and the place isn’t important, what makes me ‘me’ is spending time with friends, reminding myself that I’m still the same person they want to spend time with. Whether I’m drinking or not, it’s so reassuring to know that the ones closest to me still love me – that really is the best feeling ever.
I’d love to hear of anyone else with UC who’s fought hard to retain some of the person that was there before the illness…if not ALL of the person who was there before.