It feels like it’s been ages since I last wrote about my actual disease, so this is going to be an ulcerative colitis post! Yaaayyy…
It’s not going to be particularly upbeat though, I’m afraid, because I am bloody fed up with the bastard. For the thousandth time, I am a bit not very well.
I’ve mentioned in previous posts that my colitis kept flaring up last year, meaning I was on and off steroids so often that every IBD professional who looks at my folder actually winces. At the beginning of the year, my lovely IBD nurse told me that we should aim to keep me off steroids for the whole of 2017 as a result. At the time this gave me a not-inconsiderable swirl of anxiety, but on the outside I was all:
But then, things were okay for a couple of months. Then they started to get a bit crappy (ha), so I was put on some mild, non-steroid extra medications, and it cleared up. All was well for a while, then it started to get worse. I was given a colonoscopy (fab) and some more mini-fixes, and it once again sorted itself out. Here came a blissful period of about two months in which I was pretty consistently fine, could go about my life without worrying and sang daily in the shower. Then about a month ago, my colitis sensed a fun-packed fortnight on the horizon (comprising of having friends to stay, a party, my birthday and a holiday) and evidently thought:
This time it took a lot of extra medication to beat the fucker back down, but I have a very serious takes-no-shit (ha) policy for my birthday and wasn’t giving up easily. Now, whether my colitis had taken this defeat personally, or whether it took me on my word when I pleaded for just a couple of good weeks, it’s back. Literally the day after I had successfully weaned myself off the extra meds it was all churning, aching, stuck-in-the-bathroom fun again.
And it’s not that I (by which I mean my wonderful nurse) don’t have any more tricks up my sleeve to get it back under control, it’s just that I am so friggin tired of this merry-go-round. Going from living my life like every other person, to analysing all my plans for the next fortnight to see how much of a risk they’re going to pose to my health/mortification levels. To being asked for drinks with work, and trying to find a subtle way of saying ‘no’ that’s not ‘if I drink anything right now I’ll spend the whole of the next morning on the toilet’. To spending the day after my boyfriend receives really good news literally willing myself to feel less ill, to be enthusiastic, to eat this celebratory food, not worry about that glass of champagne and not have to curl into an exhausted, bowel-bludgeoned ball at the end of the day when I can’t power through anymore. To knowing that a two-hour car trip to and from my brother’s hour-long graduation ceremony won’t be risky enough to stop me from going at all.
It’s exhausting, and has me a bit:
And I’ll be okay. I’ve now officially caved in to the preparation for being put on another long-term drug which will (PLEASE PLEASE PLEASE) finally get me off the merry-go-round, I’ve got more temporary-fixes on the way and I’ve got lots of lovely people around me who are very understanding of the (really, quite spectacularly) volatile mood swings that come along with this frustration. In my outside-health life I’ve had lots of good things happen in the last week, which helps an inordinate amount, and I know I’ll be okay in the end.
But to the merry-go-round, I say: