I've previously debated within myself whether I should write this entry over the past few years, as I've recently hesitated at exposing these deeply personal issues to the wider world. But after delivering a presentation at work on Friday for DonateLife Week 2015, I've taken great comfort in sharing my health journey with other people.
Since my diagnosis in 2010 (most recent blog post on that initial period here), I started to shy away from posting about my personal life, and especially my health.
It's now been just over five years since I was diagnosed with primary sclerosing cholangitis (PSC) and ulcerative colitis (UC). Physically, I've been coping ok over the past five years. The almost constant nausea and lethargy that comes with chronic liver disease tends to become normal after a while, and it's only during the more intense episodes every couple of months that it affects me enough in order to not be mostly functional.
Thankfully, my regular MRI scans (which are mainly to screen against biliary/liver cancer) have shown that the progression of the sclerosis has been minor in the past 4 years, and hopefully that will stay the case. Although the path of PSC varies wildly between each patient, one thing that has always been on my mind is stuff like that German study that found the median survival time for PSC patients from the time of diagnosis to death or liver transplantation was approximately 10 years.
If I had to be honest, the biggest thing that affects me on a daily basis as a result of PSC isn't something happening in my liver or my bowels, it is the anxiety over it. Roughly three years ago, I started having panic attacks which were mainly centred on anxiety about my health.
Pain and tightness in my chest would have me thinking I was having a heart attack, and tingling in my hands would make me panic. I'd never had uncontrollable anxiety before then, so at the time it was a terrifying and completely foreign experience. Don't even get me started on the paradox that is anxiety about anxiety! Uncontrollable and 'irrationally rational' anxiety is something that I cannot convey in words; in my experience it must be felt to be properly understood.
My battle with liver disease is a long drawn-out one, but my battle with anxiety can be a daily slog. It wasn't made any easier two years ago, when I was experiencing prolonged muscle pain and tingling hands. After doing all the regular checks for heart and other pathological problems, I was also diagnosed with fybromyalgia. Chronic muscular pain adds another dimension to my general health, but at least I have some kind of relief knowing that something catastrophic isn't happening to me, and that it isn't all in my head.
Last year I started on medication that has greatly helped with the anxiety, and my only regret is that I didn't start it sooner. I feel like myself again, and although the anxiety is still there, generally it is well under control and doesn't affect me every day.
I've recently met a lot of people are open about their own mental health issues. It has been very comforting personally knowing people who are having their own mental health battles, and to know I'm not alone in dealing with it. Coming from my own ignorant background on mental health issues, I want to help destigmatise attitudes surrounding mental health problems. If this blog post helps that a little bit, then I'm glad to have exposed something that I've previously kept private.
Your thoughts and prayers are always appreciated. 🙂
PS: visit DonateLife to become an organ donor, and don't forget to have the chat with your family!