Monday, 19 November 2012
I can't tell whether I'm sad, pissed off, or just fed up anymore. Either way I'm done.
I can't even hold the boy I love when the world decides to give one of us hell.
I'm saving 75% of my earnings each week to try and get enough to move but know realistically I'll never afford it any time soon
All of my friends seem to be facing their own hell right now and wont even talk about whats going on.
Hell some of them I'm not likely to really spend time with in any meaningful way until the new year.
I'm currently scared every day that the friend who is pretty much the only one getting me through things might not be there the next morning
I keep telling myself it'll be better in a year. At least I'll have a shoulder to cry on. But that's not definite.
And it certainly won't mean life suddenly gets simple. But right now, I really NEED something to go right for someone in my life.
Because honestly, i'm tired of trying so damned hard just to keep everything together, just to keep everyone from falling to pieces.
Everyone around me is currently working so goddamned hard and none of us seem to be getting anywhere or even just happy.
And the most I can currently do about ANY of this? Is rant on twitter in a vague attempt to let it all out and not go completely crazy
And there's just to much shit going on for me and the people i care about for that to work right now. So PLEASE, just STOP with everything.
/rant. I think. It hasn't changed a god damned thing, It hasn't helped. But sometimes you just can't fake that smile anymore
Sometimes you need to scream until your throat is bleeding its so raw. But I have flatmates and neighbours, so this is as good as I can do.
So there you go, that's what's happening with me.
Though admittedly, certain events have improved today considerably... watch this space....
Monday, 12 November 2012
My HIV strain didn't show any signs of specific drug resistance yay!
My CD4 comes in at 570.
My viral load is currently 90,000
For those not in the know, CD4 is basically a measure of how strong your immune system is - it's to do with white blood cells, you can go google it if you want to know more than that cause otherwise I'd fill several screens worth of text with information on CD4/CD8 cells and lymph nodes. I'm well within the normal range, so I shouldn't be about to die any time soon. There's also no urgent need to start drug treatment - but more to come on that sometime after Friday.
Viral load kinda measures what it says on the tin. In copies per ml of blood. The results can range from <50 a="a" aim="aim" and="and" any="any" as="as" asically="asically" ballpark="ballpark" be="be" body="body" dirty="dirty" does="does" drug="drug" easy="easy" elevated="elevated" eventual="eventual" evil="evil" expected="expected" fairly="fairly" hiv="hiv" i="i" in="in" infection="infection" interpret.="interpret." is="is" it="it" its="its" less="less" load="load" m="m" million="million" mine="mine" my="my" nbsp="nbsp" not="not" number="number" of="of" on="on" p="p" recent="recent" s="s" so="so" somewhat-high-ish-but-nothing-to-worry-about="somewhat-high-ish-but-nothing-to-worry-about" spreads="spreads" that="that" the="the" therapy="therapy" things.="things." this="this" throughout="throughout" to="to" treatment="treatment" undetectable="undetectable" viral="viral" work.="work." would="would" y="y" yet="yet">
Oh also my liver function is slightly above average. They took more blood for more tests.
These are great as a rough guide to where I am, but what is FAR more useful is the trend of both these numbers over time. The faster my CD4 decreases/viral load increases the more likely it is that I'll develop symptoms and the worse my body is doing at keeping the infection under control. (I would say fighting, but ultimately, there's no 'win' here, even on drug treatment, the best I can get is to suppress the disease to a point where it doesn't particularly affect my daily life). So basically I have to get tests for the rest of my life. I see the consultant on Friday and we'll work out then what the next step is, and therefore, how often those tests are likely to come and when I'm likely to know how good my body is doing against the virus.
If you want to know more about my results, ask me in person, or go google things. Either way expect information overload. I've kept it pretty short and simple here for ease of understanding.50>
Friday, 9 November 2012
No I haven't miscounted, there's an Aftermath 1 I've spent 4 days trying to write and it just won't come out.
Today was the first day I didn't have anyone to see, no one to check up on me, no errands to distract from my thoughts, and no friends to see to reassure them as much as anything that yes, I'm surviving (whilst telling you all just enough honesty that you'll believe me ).
I wanted that time, but I also didn't. I'm both very solitary and very social as a person. I need long periods of both in my life. Plus I'm very aware that I've spent the better part of 2 weeks now both avoiding the knowledge myself, as well as having to deal with everyone else, and the rest of life, that I've surpressed it everytime I've started to have any kind of emotional reaction to what's happening. There's been people around, I've been in the middle of a tube journey, I've been at work... So hopefully some time to myself would start me processing what has happened finally. I'm not saying I'd be ok in one evening. But the full impact of it all might finally start to affect me.
It didnt of course. Anyone who's known me for long enough knows I'm so good at surpressing emotions and lying to the world that I fool myself, and cause myself all kinds of problems because of it. So no, it hasn't hit me yet.
I did get some connection to recent events though. Mostly thinking about all the things im angry about. All the things that have hurt me recently, that have let me down, that I wanted to rail against but haven't, because there's no point, because I don't have the energy, because it wouldn't change anything, because other people have their own lives to worry about, because I just don't know where to start.
All the things I need right now are, for whatever reasons, unavailable. They're just not practical or possible. Even the ones I ask for. And no matter how much I strive to remember it in life, its always a nasty shock each time to have to realise all over again that to varying extends, you are always and ultimately alone in this.
The boy that is normally so sure of everything, and everyone; who doesn't get bothered by things the way normal people do; who always finds a way to to cope, is really not ok. So not okay that I just admitted it and told the truth about it. This is the hardest thing I've ever had to face. I am so incredibly scared and I can't even work out why. And the things I should be able to rely on to get me through this, just don't appear to be there when needed.
I'm tired of being strong. I was being strong about so much before this all even started. I am really not okay.
Tuesday, 6 November 2012
People keep telling me I'm brave.
I don't feel brave. I feel like someone who got kicked in the teeth. Being crazy and having 2 lifelong physical problems to deal with wasn't enough. Something felt I needed more. I'm not asking what I did to deserve this. I'm just not feeling brave. I'm feeling like someone who's scared and angry and is looking for as many kinds of outlets for that as possible.
I'm forcing myself to write things down and tell you what's going on because if I don't actively make myself do that I know I will close off, and run as far away from all of you as I can, and I won't even notice I'm doing it.
Monday, 5 November 2012
You know that phrase, 'today is the first day of the rest of your life'. Well that's true. They just don't always point out that might not be a good thing.
The last week has been all kinds of hell, and is one I won't be forgetting anytime soon. Friends, and loves, have had their worlds fall apart around them, and then mine started to crumble too.
Halloween is my favourite holiday in the entire year. It's a day when everyone goes to hell with expectations and taboo and the concept of what's acceptable and permissible and let's just go with it. We are given the liberty, for one day in the year, to be something we're not, or we always wanted to be, or just for the hell of it. We're given permission to gorge ourselves on candy, even when we're long past the age of knocking on doors for it and just go buy it from the store ourselves. And for one day, we don't cast those judgemental looks at people who eat some strange food, or walk down the street wearing bizarre clothes, or act crazy and play pranks on coworkers and the like.
Halloween is a day I always look forward to every year.
And then this year, this happened:
That's my rapid HIV test from the sexual health clinic last Wednesday. The top faint red line in the middle is the control. The second red line shows it was reactive.
So yeah, that's happening...
And today, the 5th November, I had the full bloodwork results back that confirmed this. So here's a post about that. It's going to be all over the place because that's what my mind is like right now, but there you go.
I guess first, why in the hell am I blogging about this and putting such a thing out on the internet?!?! Well, I know who tends to read this blog, and they're people already know, or would find it out or work it out sooner or later anyway. It's a way for me to articulate, and work through my own feelings and thoughts on the matter, and record the development of those over time. It gives me a way to say some of the things I might not be able to face saying in person. And the people who know me, or read my blog regularly, know I'm fairly upfront and honest about things. I'm not gonna insert something into a conversation for the sake of it, but if something's relevant I tend to have no problem being matter of fact about it. If something major is happening in my life and I'm thinking about it a lot, it's gonna end up on my blog one way or another.
So how am I doing? Honestly, I have no idea. It hasn't really sunk in yet. I'm doing that wonderful detachment and shock thing that tends to accompany such news, and that I'm a hardcore pro at especially. Occasionally a wave of emotion hits me, and all I want to do is cry. But I very rarely cry. I've mentioned that in past posts. And so far, I've teared up a little, but I haven't properly cried about it. It'll hit me eventually.
I had the appointment for the confirmation at 2pm today. Since about 2am this morning I was so completely terrified. I couldn't eat or drink anything I was so nervous. I've never been nervous like that. I don't get nervous by and large, but even when I do, it doesn't give me any kind nausea, just anxiety. But today I couldn't face anything before that appointment.
I spent the 5 days in between the fingerprick test and today's appointment trying to gear myself up to the concept. Oh sure, it might be a false positive, and I'd been on PEP not that long ago which can fuck with the readings. But everyone hopes for a false positive, and they are still very much the minority outcome. Chances are, if the fingerprick tests shows up, you've got it. Plus I found it easier to start the lengthy process that will be coming to terms with this 5 days earlier and then hope that I could breathe a huge sigh of relief today, than rely too much on what turns out to be false hope and get crushed all over again.
The weekend I got so high I couldn't think straight. And everytime coherent thoughts started to form in the back of my head, I went and got higher. And this worked for 3 days. Until some time in the early hours this morning. Sure, it might not have been the best or most advisable method of coping with the news, but it worked for me, so who's to argue? But eventually, morning comes, and you have to stop standing idly in that shower for no real reason, and turn the water off and face the fact there real world is still out there waiting for you, and doesn't stop.
The diagnosis is made all the harder by the fact that I was genuinely not expecting a positive result. Oh sure, I've been idiotic at times. If this had happened this time last year it would still have sucked, but I'll freely admit I was being stupid and wouldn't have been surprised by the result. But since January there's always been some kind of 'significant other' type figure in my life, and quite frankly, I take CONSIDERABLY better care of myself in all sorts of ways when I have someone else to worry about, when my actions directly impact someone else's life as well as my own. Yes, there had been the PEP incident a while ago, but I thought I was clear on that.
So I was expecting a non reactive result. The only other person I'd knowingly not used condoms with in those 6 months was definitely negative and known very well to me. Because of the fact that I'm a sensible boy and go get tested for everything every 3 months, we can basically pin my infection down to sometime in the last 6 months. I also see no point in denying that yes, I do have sex on drugs, and you probably all know by now I like my sex as rough as I can get. So it either the guy that resulted on me being on PEP, though I was topping so that's damned unlucky, or it's not outside the realms of plausible possibilities that condoms got torn without noticing. I'm usually pretty astute on these things - again, I might do silly things like have rough sex with strangers on drugs, but I have some sensibilities, and I do check that the guy has a condom on and replace them during long sessions etc, but I do have to be open to the idea that something might have slipped past my notice. I may take risks in one way or another, but they are calculated, and however it's happened, I can definitely count myself as unlucky, and the fact to the best of my knowledge and ability I'd taken all sensible precautions to stop something like this from happening, made the blow all that harder when it came.
To those wondering, I don't know anything more yet besides having HIV. They've taken a million and one vials of blood for all the various tests, I should have my CD4 count and viral load details next week. So check back here then
Of course, anything like this brings with it its own good things and bad things all wrapped up within it. I told all my closest friends about the reactive test. More people will end up finding out now that I've had it confirmed, but your closest friends are there to be the ones that support you through even the possibilities of bad news. My 2 best friends were with me the rest of halloween night, Thursday I met another friend and he took me for lunch for 3 hours. Friday I met another friend and got hugs from him before heading home to spend 11 hours playing video games so I didn't have to think too much. Saturday I saw an ex of mine who has been living with HIV for years, and he reminded me that he still gives some of the best hugs I've ever had, and promised me all his love and support, and the fact that I can talk to him as someone who will know EXACTLY what I am going through right now.
It had disappointments too. One best friend seemed to be oblivious to the fact that I was starting to breakdown, despite me actively telling him. Admittedly, I didn't respond to this in the best manner (my ability to emotionally articulate myself plummets quite spectacularly when in certain situations), and I have my own amends to make for that when the time comes, but plenty of people who knew me considerably less well could see something was up with me, and that my friend's actions were fairly poorly judged in the first place, so I know I'm not completely over reacting. The other best friend promised to come hold my hand today. The boy I really really want to hold me right now can't, so in his place I had the next best thing. The last thing I said to my friend was "don't be late". We arranged to meet half an hour early. And he still missed my appointment. The worst part is I don't even see the point of bitching him out on that. There is no amend to be made for that one. There is no next time, or making it up, the moment has passed, and nothing can change that. So no amount of wanting to punch him right now is going to change that either. If someone else wants to punch him on my behalf right now I probably wouldn't stop you. But he's a best friend, so knowing him, when he reads this, he'll punch himself for feeling so bad.
A few people took holiday days to support me today. I'm not entirely sure why. There's been no support for them to give. I understand one person's reason for taking holiday today. And I am really grateful that he did. But quite a few of you seem to have wasted holiday or lost out on wages for no gain, for myself or you to be honest.
It's funny to see who comes out of the woodwork. I haven't posted specifics on facebook or twitter per se. But I've posted tweets about the bad week I've been having, and some people have managed to put 2 + 2 together and come to the right conclusion. Various people are sending me messages and dms and so on and so forth asking what's going on, or indicating they have an idea and offering their support. I've commented on the following before, and I continue to find it funny/sad: that friends on a different continent, thousands of miles away, half a day behind, can keep up better with my life and offer more support and better words than people in my life who live 20 minutes away.
Honestly, I'm not ungrateful for your support, it is appreciated, and it will be needed, in all its various forms over the coming weeks and months. But I also find it a little odd. Those people who are like the opposite of fair-weather friends. People who are rarely in your life on a regular basis, but are instantly by your side in times of crisis. The comments of good luck from quite a few people. Like this is something that be overcome. Oh I can get used to it and deal with it and manage it. But it's unnaturally something that is now going to impact my life, and the decisions i have to make in it forevermore. I don't get that sentiment. And frankly, I would trade all your hugs to be held by just one man right now. In the morning I have to ring work, and book myself to some shifts, and start earning money again, and be a grown up. When all I want to do is being that scared little kid cowering in the corner, hiding in the dark, pulling the covers over my head, with someone there to hold me until I've cried myself out so much I've fallen asleep from exhaustion, and tell me that somehow, they will magically make it all okay, in that way that you believe as a scared child. But that whole being a grown up thing means you can't do this anyone certainly you very rarely get the opportunity to when you want. You have to earn money, you have to face other people, you have to be pleasant and polite, and not start to cry every single time you stop for longer than 10 seconds, and some things can't be fixed, and some things aren't quite okay in the same way ever again.
People tell me they're here for whatever I need. I honestly couldn't tell you what I need right now, or what I want, and I don't think I could tell the difference between the two, or if there is one at this point in time. I know one thing I want. Desperately. And it's something I can't have right now. I have to wait for it. I have to be a grown up and sort it out myself and wait until the right time. And I hate that more than anything in the world right now.
But life goes on. It has to. Or you'll get washed away by the current as it goes past regardless if you don't at least attempt to *swim. I'll survive, I'll get over it, and I'll deal with it. There's just going to be some fallout for you all for a while before then. I guess this means no more cuts and bruises and biting and crazy rough sex for the guy who's basically a walking lethal weapon now.
At least I get to abuse this line with impunity in casual conversation now:
"I'm not just positive, I'm HIV positive."