Yeesh, I’ve been trying to write something here for 30 minutes now and I just can’t do it. I sat down with the idea to write about long-term prognosis… this is not an easy topic to write about. And also one that I haven’t thought about all that much.
Maybe it’s because lately whenever I’ve made far-reaching plans and goals, these have been trampled on thanks to ulcerative colitis.
Maybe it’s because when I think back to what my life was like a few years ago when I was still racing cyclo-cross, I really thought I’d always be doing it.
Maybe it’s because when I started on my cyclo-cross racing journey, I never really thought about where it would take me and how it would shape me.
Maybe it’s because living with a disease like ulcerative colitis brings such a high level of uncertainty into every aspect of my life, it is much easier and more safe to think only about the immediate.
Maybe it’s because I’ve learned the hard way that I can feel great today and be so super sick tomorrow.
So when my colleague asked me about my longterm prognosis, I really didn’t know what to say.
Will I develop anti-bodies to the medication that is currently keeping me feeling better?
Will I keep getting these flare-like symptoms that have me walking on eggshells?
Will I have to keep going to the doctor every week to get a shot in my arm full of drugs that are designed to counteract the side effects of my other drug?
Will the iron infusions actually work and give me the energy I desperately want?
Will my bowels explode when I’m in Loblaws and at the farthest point possible from the bathroom?
Will my illness rear it’s ugly head just in time to hamper Marc’s road racing and cyclo-cross racing seasons again?
Will the slightly longer and harder run I do on Sunday push my body over the edge and make me sick?
I don’t know. I don’t have the answers. And these are questions that I try not think about much. Because these questions represent my longterm. It’s like trying to walk along a balance beam with both eyes closed while wearing stilettos (no haven’t actually attempted this…) – I just don’t want to think about how badly things could go.
So no, I don’t think about my longterm prognosis. I’m just trying to enjoy how I feel today. Today I feel goodish. Today marks my fourth medical appointment this week. But such is life and this week is a bit of an anomaly. Today I get my Remicade infusion and then I’ll go for a run on some local trails and tonight maybe I’ll go out for supper with my favourite guy. This weekend I’ll be out on my bike with some rad ladies from the trail running group, Sunday I’ll go run around the trails at Camp Fortune and cap the weekend off with a super supper at the Green Door with some very cool friends. So that’s how my longterm is shaping up. What about you?