I spent last weekend away from home for the first time since having Crohn’s Disease and a boyfriend.
Sadly, it was not incident free. For me, an incident is incredibly noticeable pain and more frequent BMs. This happened twice during our three days away. And it happened like it always does these days; without warning and without cause. It is frustrating.
Despite that, I am still going out, still trying to be as normal as I can be. I’d been feeling rough for a week beforehand, and still pushed my body through the torrent of my work schedule and my volunteer work, but I was still determined to actually go away. My cranky mood was a sure sign that I wasn’t well, wasn’t my usual 100% but I down played it.
I am now very vigilant of ‘down playing’ things; medical aliments and all the things they come with. Why? Because, not out of personal choice, I’ve been told I “act upon them too quickly and too often”. This usually comes from the group of people who are highly uneducated about chronic illnesses. Despite my age group and the level of gusto about whichI get on with things – that lovely brave face I put on, those jokes I make, the laughter I find – that gusto. It comes with that complicated mix of frustration and sadness that I’m slowly becoming used to. Some days I want to fight for myself and educate, other days I just want to get on with work, push through the pain and kindly leave at the end of the day. This changes constantly. This is the most difficult part, that nothing about it is consistent. If it was abit more.. vicious, I would be completely set on what I feel, all of the time. Sadly, my emotions get caught up in it all and I can’t quite bring myself to hate or loathe them all too much.
These incidents I spoke of before are still happening as we’ve gone into a new week, and I’ve yet to explain them to anyone or even find some sort of connection between them to reassure myself of their recurrence. My mind goes towards my meds starting to fail. Then because of the strength of my Humira and its ability to be great in my guts, I move towards stress. I stop there and find many additional responses to stress: more spots, bad eating habits, cramps, belly pain, headaches, insomnia, lack of concentration, fretting, worrying… it all begins to add up. And then, if by magic, Bernie pipes up and gives me hell.
Then I go back to the thought of a flare up. And its ability to come at the wrong time. I think about the feeling of knowing when it might be coming about again and catching it before it becomes a big motherfucker of a problem. I don’t think I can. I’m on that tightrope of wanting to be cautious enough to be sensible about my health, but I also want to be ignorant and not worry it into a stupid problem of nothingness.
The problem – or general thought – here is that I am unaware of what a flare up will be like exactly. They used to monitor my flares with my blood work, but those lofty ideas were used when I was in hospital and when I started Humira in those first shaky weeks. Because of Humira’s consistent nature in the beginning I’ve settled down into a routine of having symptoms at the end of my cycles of injections. Now, those symptoms are coming throughout the cycle. I don’t want to jump in and suggest its that without some proof. (Here I must note my thankfulness of GI Monitor app on my HTC, god send!) But even with proof, I am queasy with the thought that this could be a decent into the depths of another round of bad times. It would be bloody ironic, seen as I am a week away from my Crohniversary. It’s all this unknown, “it won’t be as bad as last time, will it?” thought that goes around my head.. its extremely perplexing.