Today has not been a good day in terms of my Pemphigus. I think I’ve been coming to terms with it as when you’re diagnosed with something like this you just don’t know enough to understand what it actually all means. I mean, I’m not a dummy… I understood what I was told and I understand it’s chronic, ie incurable, but I sort of can’t accept that yet. In fact I may never do so, I’m like that – I get a good idea and then I get driven to implement it. And I have a few ideas that need airing on this whole topic – there are relatively new discoveries about the immune system, and I’ll be investigating and implementing them one way or another.
I understand the condition. I’ve done research based on what I was initially told by the diagnosing doctor – who is lovely by the way, and I’m really glad she’s on my case – but I find it very difficult to believe this is my life now. Suddenly. Yeah, I know as well as anyone that life kicks you from time to time, but you fix it – well I always have done. I think I’ll be permanently in a state of “I can fix this” and I’ll never accept totally what I’m being told. That’s who I am.
So. I’m missing my family who are still in Australia – I’m VERY happy they’re happy doing it, and I wouldn’t have changed that even if I’d been diagnosed before they went away. It makes me happy to think they’re having a good time, it REALLY does. And they’ll be back soon enough in a couple of weeks, so all is good on that front.
But the whole thing about taking steroids possibly for the rest of my life scares me shitless. I’ve already pretty much decided I’m probably not going to take them indefinitely, as to me, the potential fucking up of my quality of life through use of them doesn’t outweigh my non-existence. And it’s THAT I’ve been coming to terms with. We all have to die sometime, I just don’t want to die inside years before my body does. I would rather be remembered as a better person (in some way).
In my particular case this is linked to the fact that I had depression nearly 20 years ago and while it’s all dealt with and I’m a happy bunny again (no drugs, just Cognitive Behavioural Therapy for me) you never really get past it. It’s still there, I just deal with it when it raises it’s head. I’m as good as I’ll ever and always be on that front and I know however I feel at that moment will pass.
But this is a little bit different. It’s not just in my head this time and on the face of it I can’t control it – that’s what I can’t accept. I’m not a control freak (I think), but this is something I supposedly have no control over and I just can’t take that.
Which all means I’ve been coming to terms with some things I have to do now, unplanned (that’s a bit annoying, heh), and also some not quite decisions made. Some I can only make with my wife as it wouldn’t be fair to make them on my own. We’re a tight partnership who have got through some life together and that’s the way we work.
In all, not a good day then but tomorrow’s tomorrow.
