Skies of darkest blue

A friend posted this today which struck a chord:
https://unguardedweb.wordpress.com/2017/05/12/behind-dark-clouds-and-silver-linings/

I'm doing better than him.  Mentally at least.  But I have a whole host of problems, physical and mental, and every day I run up against blocks that remind me I'm forced to adapt, and in many cases, limit, my life.

There's the daily pills that keep my immune system from collapsing.
There's being audibly wheezing from he stairs to my friend's place after going up and down them twice whilst helping them move out.
There's the constant question in the back of my head, that maybe I have to accept that a mid level 9-5 office job is the best that's sustainable for me mentally, despite how that infurirates me in its own ways.
There's the days when I sit for 2 hours at a train station because I'm in so much pain I can't move to get home and I just have to wait it out
There's learning, long ago, how to get through 2 or 3 days at a time on no sleep, because it happens so regularly I couldn't classify it as sick time and keep a job.

He's right - you just accept it.  You have to.  You occasionally wonder at all the things you could do if you didn't constantly adjust your life just so you can get through your days without breaking down in some way.  But that doesn't stop it from being the case.

I tweet about my cramps
But I sit there, for 2 hours, in the cold and the wet.
Until I can move again.

Why oh why didn't I take the blue pill?

Words from a good friend if mine:

"I know people who's islets of langerhans don't work. They need to take pills and injections every day just to perform as basic and human a task as eating.
I know people who's CD4 cells don't work. They have to take pills every day go perform as basic and human a task as getting over a cold.
I am a person who's brain doesn't work. I have to take pills every day to perform as basic and human a task as feeling love and feeling loved.

Sometimes I hate that I need that pill just to be human, but it's good to keep it in perspective."

Skittles

The other day I found out I do not have melanoma.  It was my second cancer scare within 6 months.

I'm a pretty sickly kid, I have one health problem after the other, I'm on an array of drugs, I get a new health issue on a regular basis.

Currently I find myself wondering, having dodged this one, how many months do I have before the next big major health problem rears its head.  All my issues are pretty big, not quite life threatening, but severely life affecting and would only take one bad turn to become threatening.  I'm constantly on borrowed time and just waiting for the one that finally brings the house of cards crashing down.

Most recently, I've been not wanting to take my ARVs.  I've only intentionally skipped my dosage once before; it was shortly after I started them, and I needed to do it so I would experience the regret and panic that ensures I take them every day.  But recently I don't want to.  At least that way I know what'd get me, and with my other health issues chances are it wouldn't be long at all  before my HlV made me very ill. 

The fact that I am considering saying "fuck it" to my HIV meds is a very, very clear sign of how not okay I am these days - I'm religious in my taking of them, I've missed maybe 5 doses tops in 2 years of taking them, like everything else, I am sick and tired.  Sick and tired of waiting to see what I come down with next, how long it'll be till that happens, how it'll interact with all my other issues, how many meds that will take to control; it's all just another exercise in trying to survive day in day out and that is very definitely I am something I am tired of, so why not call it quits on this?

Aftermath 3/Results 2

A week and a half ago it was time to visit that most delightful of all additions to my life, the HIV clinic.

I'd been just before Christmas to discuss starting meds - I wanted to start meds pretty much as soon as possible after my diagnosis but there were various tests that had to be run first and such.  I can't be put on one of the most commonly used drugs as it tends to cause depression in people, and I already have a history of suicidal depression so that's pretty much a no-brainer.  My doc ran some extra tests to check for any drug resistances, allergies, and also ran her suggested treatment regime past some of her colleagues to see if they had any other suggestions and this december appointment was all about the results of all that.

I actually opted not to start the meds right then - starting a few days before the Christmas & New Year period, when my routine was hardly going to be regular (not that my life can ever really said to be have any form of proper routine or regularity, but still), my eating, alcohol consumption and sleeping habits were likely to be all out of whack, and regular clinics would be shut for the holidays with access only to emergency care via A&E departments.  Added to this the never ending list of potential side effects from HIV meds - if they were serious I wouldn't have quick and easy access to my clinic to adjust my medication; if they were minor I'd spend the holiday period feeling like crap - and it just seemed far more sensible actually start the meds in January.

So January comes around and its time for another appointment.  I'm now on a set of medication, 3 different pills all to be taken once a day with food.  I happen to take mine at midnight, which is probably an irregular time for most people but for me I'm either at home, usually eating dinner around then anyway, getting in from work, finishing work, or far enough through work that I can take a 10 minute break to eat a mars bar, grab a drink and neck some pills and no-one will argue.  I've actually been very lucky and had none of the side effects that tend to happen, not even the relatively minor (and also rather common) ones.  And despite the completely fucked up state of my body's health even without the HIV, wherein it seems to just about hold itself together through some sort of delicate balance of all the various messes, the meds haven't had any knock-on effects to any of my other medical conditions either, so that's a good win all round really.

I've been taking them for just under 2 weeks now and it's all going fine, on the outside at least, in another 2 weeks I go back for more tests to check they are actually working and doing their job and also not destroying my body on the inside in some outwardly as yet unnoticed manner, but I'm pretty much expecting all that to come back fine.  I haven't missed a dose yet which is good.  Saturday night did mark the first point I had to adjust my life to my treatment regime though - I was working till midnight and a friend had invited me over after.  And as I went to grab the cereal bar I now keep in my bag and take my meds just before leaving work, I found I'd neglected to put my meds in my bag before leaving the house - one of those instances of seeing things on the table and thinking "I really must remember to pack those" and then actually not doing so.  So instead of seeing my friend I had to go home instead, and prioritize my medication, which of course was the right thing to do, but it still marks the first time I've had to reconstruct my life and plans around the fact that I now have to ensure that every day for the rest of my life I take a set of medication at more or less the same time each day.  It did however mean I got to watch the season opening New York Rangers game versus the Bruins.  Okay we lost, but there is NHL hockey in my life again, and Lundqvist made such an amazing glove save that I could probably just be happy if that's all that comes out of the Rangers' entire season.


I've also had another set of CD4 and viral load results.

Back in November, my CD4 was 570 and my VL was 97k.
From my December appointment, my CD4 is up to 1200 and my VL is down a little to 89k.

So my body has an immune response!  Who knew?!  I mean your body is supposed to have an immune response, but this is my body we're talking about, and it never really does what it's supposed to.  My body appears to have noticed it has a horrible infection, ramped up the immune system as a result, and is even managing to fight the thing somewhat.

Of course, this is what the sneaky HIV wants to happen, as my body ramps up the immune response that just gives it more T-cells to infect and turn into HIV ultimately, leading me down a long and dark road of unpleasant demise.  But that's what the meds are for.  They stop that.  Yay meds!


In other health news, I finally have an official address in London once more, that I can send mail to and everything.  Which means for the first time in 18 months I can register with a GP.  This is going to be entertaining, as there's basically a whole host of things that I haven't really dealt with cause they haven't been urgent, but have still been building up over time.  And I'm now running very low on the stockpiles of various medications I keep for all my other various conditions and problems.  And the problem with having spent ~20 years in and out of hospitals, being case studies for research groups and such, is that you know quite a lot about how to medicate.  So I basically have a shopping list to go to my GP with.  Doctors don't tend to like it when you do this.  And amongst the items in that shopping list, I need some sleeping pills, because I'm fed up at struggling through the worst bits of my insomnia, and the pain meds that I'm currently on for my intestinal cramps I've grown too tolerant of, and need to switch from, so I'm asking for something stronger.  Which means a boy with a history of attempted suicide, suicidal thoughts, and a mood disorder, is going to ask to be given large quantities of super strong pain pills and sleeping tablets.  If I'm lucky my doctor is dumb and the pharmacist is blind and no-one notices any GIANT RED FLAGS going off about that one.  For the record, I'm not ever planning to use the drugs to commit suicide - there's a nice block against me acting on any suicidal thoughts in my mind right now due to certain circumstances in life - I genuinely do want the drugs for my various medical problems, but I suspect the system will still set off a few alarms when all that goes together.

Day 1...

Results 1

First set of results from the docs this morning.

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.

Aftermath 2

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.

Reactions 1

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.

Remember Remember...

Most of the time I don't think about it,

Like it happened to someone else.

Then it hits me, and I, uh, can't stop crying...

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."