I’m Back
Baby.
10+ years ago I wrote a blog about living with my diseases: Ulcerative Colitis and Dilated Cardiomyopathy. I loved it and it was very therapeutic for me. It’s time to bring it back.
Right now I find myself in a bad place with my health. My UC has taken a bad turn and the acceptance of this fact comes with the realisation that this is something I’ve wanted to do for a while but I’ve prioritised other things.
Let me catch you up on where I find myself health wise. I have these two diseases (amongst others) and have been living aware of them since 2008. A long old time! I’ve adapted my entire life style and most life choices to keep my body as happy as possible. I’ve always recognised stress and my mental health directly impact my symptoms - and have had docs literally laugh at my for the theory in the past..…but I think we’re all on the same wave length finally.
Good management has been key to me fully living my life. Management for me has meant: nutrition + movement + psychological therapy. Simple? Ha, it’s a daily quest to stay in balance and I go through waves of getting it right and falling off the band wagon. This approach to life and feeling that I can influence the outcome of my own future (!) has given me issues of control, anxiety and an eating disorder to navigate. Thanks to cognitive support from psychological therapists, I’m pleased to say those issues have somewhat quietned. And now I’m left with where I am today - a healthy relationship with my mind, a great understanding of it all and the motivation to embrace this challenging era I’ve just entered with my physical health.
Since Jan this year (‘23) I knew something was wrong. I tried to get support from my IBD (inflamatory bowel disease) nurses at my hospital. I was repeatedly given phone appointments that were way in to the future when I felt the matter was urgent. Things progressively worsened and in October I found myself in a full colitis flare which (the next few sentences aren’t for the faint hearted) looks like 5am wake ups, back to back uncontrollable bowel movements, blood passing 10 time a day, excruciating pain and ultimately getting to the point of being so light headed with pain I fell down the stairs. I took myself to A&E and after a few more hiccups and disappointing care, here I am at the beginning of December in a slightly better place. Just.
The challenge I mention isn’t necessary the symptoms, although debilitating and meaning I can’t work, have any sort of social life or eat anything near normal for the short term, it’s the acceptance of learning my disease which was in just 5cm of my colon is now in 35cm. There’s no going back from that and my chances of being sick more frequently and getting bowel cancer have risen dramatically. I am devastated and I am disappointed. I am working on acceptance.
So why am I here, sharing this pretty personal stuff with you? I am not here to be a victim. I am powerful human going through some real shit and I am here to share this power and knowledge. Through this blog I’ll share everything I know and learn so that, I hope and have always hoped, it helps others.
If you take one thing from this, take this…. I wish I’d trusted my intuition more this year and pushed harder for help. Advocating for myself. I wish I’d trusted myself, put myself first and asked for the support I needed. That’s lesson 1.
Peace, love and the best of health.
L x