I said something about my IBD the other day, which in retrospect really made me laugh: ‘This is my life now. I’m kind of just getting over it.’ I mean, bloody hell past-me, why so melodramatic?!
Once I stopped laughing at myself, I figured I had a point.
When I received my diagnosis, I made a promise to myself that I wouldn’t let it change my life. I didn’t realise that there were lots of little changes I would have to make, but I have made them and I’m accepting that this is it now, and I have to work with what I’ve got!
So, here’s a list of the things I have had to accept:
- Medication. I should probably consider myself lucky to only be on two different drugs but ugh. One of them is a tiny tablet, a steroid, which dissolves before you can even swallow it and tastes awful. Thankfully, at the time of writing, I am on my last week of the course of steroids! The other is a huge, orange anti-inflammatory, and it actually has a smell to it- I didn’t even know this was possible! I take a few vitamins as well to keep my strength up!
- Side effects. Again, I’m quite lucky, but the side effects haven’t been too bad. My favourites have been: stomach cramps (ironic because that’s a symptom they should be tackling); absolutely awful skin, like I needed to look as bad as I feel, ha; 4 hour sleeps, literally, only being able to sleep for 4 hours at a time; and, finally, the shakes- some days just wobbly fingers, other days my whole left arm completely out of control.
- Being tired. I’ve always been a really sleepy person- I’d often sleep in till midday on the weekend. On the flip side, I could also party till the early hours and survive a Sunday on 4 hours of bad sleep on a blow-up mattress. Now, however, I’m often ready to go to bed at 8:30pm. I rest my eyes on the tube, even if I’m standing. I have power naps in the afternoon. I’m always knackered!
- Tests and treatment. Before I was tested for Colitis, I had only had one blood test, and I was so young I couldn’t remember. Now, I’ve had enough to know the procedure so well I could probably do it myself! I’ve even grown to like to green bruises that form in the hours after. One test I can’t convince myself to like is an endoscopy, but that’s pretty understandable.
- The add-ons. In this case, I’m talking about anaemia! I guess that would explain all of that tiredness I mentioned earlier, eh?
- Talking about it. I wrote a piece for The Mighty last month about the difficulty of talking about my disease- about my body. As I said in the piece, as difficult as it is, it is very much necessary!
- Never knowing what’s next. When you don’t know your triggers, there’s little you can do to guarantee you’ll be okay. I can sleep really well, but wake up feeling sick. Or have a really productive day, and then be hit with extreme tiredness before I’ve even made it home.
- My inability to ignore the things going on in my body. Out of sight, out of mind doesn’t really work so well here. I’m giving my permission to, every now and then, say: “Actually, I’m not entirely well and that’s okay.”
Bit of a serious one today- well done if you made it this far! I am fundraising for Crohn’s and Colitis UK- I’ll be doing a walk this summer, but in the meantime I’m making my family members feel bad (hehe) and baking cakes! The money will fund research- little is known about the causes, triggers and there’s no real cure right now. It will also help C&C UK continue to support the thousands of people dealing with IBD.
Thanks for reading!