Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Wednesday, November 21, 2007

Still here. Here, still.

Sorry that this blog's been offline for a little while; I was trying to work out some better ways of keeping it anonymous, which hasn't worked brilliantly so far, but I've now got it working from a new email address that's specifically for this blog, so I'm feeling a little more able to talk here again.

I'm glad that I've got that sorted out, although I'm sure that my identity is the worst kept secret in the world, as is my status. It comes through in so many subtle little things, and I'm generally open about it, just not to people I work with, for the main part, and not with people I think will be stupid about it.

I got my latest blood test results through. My cd4 count is 351 and my viral load is 3,150 or something like that. While it's obviously heartening that the viral load is coming down, the wave of anxiety I felt while waiting for the results broke onto the shores of, well, sadness when the results came through. My numbers have been all over the place, to the extent that I've run sweepstakes on what my scores will be, but I've got to accept that they're unlikely to get better and I have to resign myself that while I'm not on medication, I do have a progressive and life-threatening condition. Of course, medication changes that and makes it manageable, but there's still a sense of bereavement for a chapter of my life that has passed and can never quite be regained.

I still struggle with the dilemma about how open I should be about my status - I mean, I shouldn't feel like it's something I have to hide from people, but I still feel that it's a failure on my part that I got infected. I mean, we all know how to avoid it, don't we? I still don't know how I caught it, who I got it from or much like that - there's a few times when I took moderate risks, but I didn't do any of the high risk stuff you're always warned about, so there's, I guess, a sense of anger as well as the sadness about this whole thing. A desire to make sense of stuff that never will.

My boyfriend continues to be amazing about all of this and is hugely supportive and sensitive about my status, saying that if he gets infected, then we've got to remember that it's a shared responsibility. Intellectually, I know this, but it would have passed from me to him, so I'd blame myself, not necessarily for the act that infected him but for the fact I got infected in the first place and therefore bring an extra complication to a relationship.

3 comments:

Anonymous said...

I'm HIV- (last time I checked) and "there's still a sense of bereavement for a chapter of my life that has passed and can never quite be regained" - for me, its just getting older and never being in my twenties again. What you're going through is possibly more than that, but if it helps, the baseline against which you should compare may be different from what you thought it was.

And as someone who is lucky enough to be not considered by you as one of the "people I think will be stupid about it", it may hearten you to know that for a while, I completely forgot that you were HIV+. I think you're about right on the openness at the moment.

I still wonder whether I should read this blog or not, given that I know you.

Anonymous said...

I recently got bad news, my CD4 count was 110, which in Florida placed me in a statistic of officially labeling me as having AIDS. The interesting thing was that I was still <50 which was odd.

After a quick repeat of my blood work, we found the lab was wrong in their calculations.

Sorry to hear about your flucuations.

Going Gentle said...

I had a similar lab error once where my count had gone from 400 or something like that down to 85 all of a sudden, but apparently the results were all wrong - that was only a few months after I was diagnosed so it kind of threw me, but in some ways, I'm hoping it served as a good rehearsal for when I need to face my failing immune system and start on medication.

My thoughts on it vary from it being a symbolic milestone of defeat to it being no big deal. Luckily, it's the latter one that I'm veering towards most of the time.