I’ve noticed that recently I’ve been less positive and a bit more grumpy when thinking and talking about my treatment.
It’s not really that anything has radically changed, but time is passing. The constant fighting with the ileostomy, the lack of sleep and consequent tiredness, the limits on what I can physically do while I’ve got the ileostomy. Trying to cope with the frustrations of the treatment not working as planned. Not being able to move on with my life plan in some of the ways that I would like to. It all adds up. And wears me down.
I noticed that on the 26th it will have been 3 years that I’ve been fighting this, and I’ve realised that actually I’m never really going to be able to completely stop, because even if we do finally solve my current problems, I’ll still never completely recover back to the level of wellness that most people take for granted.
Meanwhile, because I’m basically coping with being back at work and I’m getting pretty good at hiding the outward signs of my condition, there seems to be an expectation that I can do all the mad things that everyone else is expected to do again. Which actually, I can’t. Fortunately my immediate colleagues shield me from some of the worst excesses of the IBM system – but it’s frustrating that they have to.
For the first time I have found myself wondering if I should declare myself “disabled” to the IBM HR machine. I guess it all hinges on your definition of disabled. I’ve never considered myself to be disabled – there are people in much worse situations than me – but I’m starting to wonder if I need that label to maintain awareness. It feels like a very large step though, and one I’d really rather not take. Somehow it also feels like giving in.
And in other news, my appointment for the MAG3 Renogram is now through for Thursday morning. The fight goes on.