Sometimes I worry what people think, I worry that they may think I’m overplaying my illness, faking it or being dramatic. I worry that they will see me on Instagram laughing or out with friends and wonder how it is that I cancelled my plans the day before.
I worry that people think I’m being lazy when I sleep in till 11am or making excuses when I don’t want to go out. And so I thought I’d try and explain how life is with MY chronic illness.
Have you ever had a stomach bug or food poisoning? That feeling of crampy pain, constant diarrhoea and a concern you might not make it to the loo? Well that’s how I feel most days, for months and months now I have been going to the toilet 20+ times a day, I have accidents and to top it all off, my poo is so acidic that it’s burning open sores into the skin around my bum which bleeds and is very painful.
I often go to the toilet 5 or 6 times through the night which means I’m thoroughly exhausted most of the time. I have pouchitis which is an infection in my Jpouch so I feel unwell with temperatures, pain and generally being under the weather.
My immune system is rubbish, IBD is an auto immune disease, meaning that my body is attacking itself. Between this and years of meds that batter you down, I literally catch every single bug going. This means I’ve had a cold and cough since October.
There are days when the fatigue and pain is too much to bear. When the painkillers don’t do anything and I just need to sleep. I take anything from 4-16 immodium a day and codiene every day. The immodium gives me stomach ache as it attempts to slow the process of food through my system and the codiene make me fuzzy headed and sleepy.
There are days when it all gets too much emotionally, I cry, I hide away, I wonder if it’s all worth it. The never ending treatment and the feeling this could be for the rest of my life is soul destroying. Times when I can’t find a silver lining and wish I could just be normal.
Sometimes I simply pysch myself out, I worry so much about having an accident in public that I talk myself out of going anywhere, preferring the safety of my bedroom to the scary, judgmental outside world.
When I do manage a day out, it comes with planning. No food the night before, codiene to help me sleep and lots of Imodium on the day to get through without shitting my pants. It takes a mental strength to just get out of bed. I pack supplies of meds, wipes, bags and spare underwear.
So please try and understand, I know I sometimes appear flaky but it’s only because life is so damn hard right now. I try my hardest to lead a ‘normal’ life, to keep in touch and come to your events but sometimes it is all just too much and I apologise for this.
Just remember how it felt when you had that food poisoning/tummy bug. Did you feel like partying, going shopping, going to work, going to someone else’s house?
No? Well, please have patience with me.