PosLife - HIV and Me

I know it’s been a very long time since I actually bothered to update this – a lot has happened in that time; well, as far as my personal life goes, a hell of a lot has happened – I got exam results that would make Ayn Rand feel mildly retarded (always good – I hate her. No-one, and I mean no-one, has ever got to the end of “Atlas Shrugged” without vomiting from ennui), and I have moved in with my partner (yes, it’s a forty-five minute daily commute each way, but it’s so very worth it to avoid the potato creature and his hideous horse-faced harlot (see what I did there?) who NEVER go out). Now then, that was a lot of brackets. But back to the point I was making –

It’s time for another 6 month check up, so I’m doing it here at home.

When it actually got around to booking the appointment for this check-up, shenanigans were had. I tried to book it in Hull, after they had bugged me about it for about a month – so when I actually got round to making the appointment, to see the usual consultant, I was told Usha was to be off on sabbatical for the next God-knows-how-long, so it would be simply impossible for me to come and see her. Helpful, they are. So while I made an appointment to go in and see them (I say them – some random consultant I would have had to wait in the walk-in clinic for), I fobbed it off when an argument over the fate of a can of baked beans pushed me over the edge and on the next train to my partner’s town.
So, I made one here. No mean feat, I’ll have you know. I rang up, just the other day, and after ringing engaged a few times, I got hold of someone.

“Hello?”
“Yeah, hi. Can I make an appointment for a 6 month HIV check-up?”
“Do you want the full screen or a partial screen?”
“... no, I already have HIV.”
“Oh, right. Sorry.”
“Yeah, so, six month check up?”
“Well I can book you in on the 27th of April.”
“Oh, right... well, I won’t be here... got anything earlier?”
“No, sorry...”

“...Veccy, is that you?”
“Yeah. Oh, shit! Hi! How are you?”
“Fine – it’s time for a check up, though.”
“OK, well... let me see when I can pencil you in. Anna-Louisa finishes at 11:30 on Monday but I just asked her and she says she can see you at twelve.”
“Nice one, see you then.”

Ah, friends in high places. Working there killed me, but now I get all the PAP smears I want.

PosLife.

Fasting blood tests came and went without a minimum of fuss and hysterical screaming. And so this is the last set of tests I will be having before the Christmas period d- not that I’ve had a lot on the run up – on the contrary. I think they’ve forgotten about me. Maybe they found out that I don’t have HIV after all and they just don’t want to tell me. Wishful thinking, I guess – but I thought we agreed I was past that stage? Never mind, eh?

So all I’m left with now is the usual malaise of being back in this shithole after spending a fantastic five days at my boyfriend’s house. I had a really good time, in all honesty, we ate a lot, we drank a lot, and I even managed to get a modicum of work done. Now, if only we could convince him to move here, I might actually end up living somewhere with more charm than Beirut. But, anyway, I’m home. I’ve spent my day nursing a headache and a stiff neck (that mysteriously materialised following a ‘flu vaccination – I’ll take the Vegas odds on that one), and wandering around the library picking up one or two books on colorectal cancer. Because that’s what I like to do in my free time.

Maybe we’re harking back to a previous entry a little much, but I’d like to point out that I had the least competent needle-nurse available in the shops today. Bent immunisation needle, she couldn’t find a vein. I’ve come back to this place with a lot more holes than I set off with. But lo, I shall keep you updated over the Christmas period if it transpires that my internet connection still works there. I’m on tenterhooks.

PosLife.

It's the first of the month. Well, it is while I write this, I can't guarantee it will be by the time I've finished it and it's finally been processed, but nevertheless. White rabbits. And a clear result on my last chest X-ray, which is rather natty. Another routine trip to Dr. Ogunlesi, who had no idea that my X-ray had come back (even though I didn, the NHS are of some use), followed by the realisation that I have my fasting bloods in a week's time and more coursework than I really dare to think about at the moment. Speciation? Please. Hold the soy.

More to come when I'm awake.

It’s great to know that you can still hold down a job when you’re grossly unsuitable for it.

I took a trip to the doctor’s surgery today – which wasn’t without its charms. It got me out of the house for about half an hour. My reason for visiting was the second chest infection in about a month, courtesy of the more feckless of my two housemates wandering around the house while simultaneously coughing on the washing up and leaving a trail of used tissues behind him. Regardless of the other, less feckless, of the two telling him this was a bad idea with an immunocompromised person in the house, he did it anyway. I’m going to start spitting in his tea.

I was a little early, but I knew that it didn’t matter what time I finally turned up – I still wouldn’t be apportioned to the now legendary Joan Clarke – legendary only insofar as no-one who is registered with her has actually been subject to her consultation. But nevertheless, I would have been happier not to get Dr. Ogunlesi. Dr. Ogunlesi is, in no uncertain terms, completely unsuited to his profession. Now, in Hull, we have recently had a spate of redundancies in many local sectors – the caravan industry for one – and many skilled and able tradesmen have lost their livelihood. Not Dr. Ogunlesi. He’s still employed and making a general nuisance of himself.

I mentioned that I was now suffering from the second chest infection in six weeks. He noted that I have HIV and so decided that it would be a good idea to get the stethoscope involved. Anyway, after the quickest and more futile once-over I have ever been given, he thought it a good idea to give me some more antibiotics, although his records showed I had only come off the last batch about two weeks ago. The records were wrong, of course, but he argued their merits. And then gave me a prescription anyway.

Of course, the course of antibiotics wasn’t going to be enough, oh no. I had to walk four miles to a different clinic where a chest X-ray would be carried it. But it could only be carried out between the hours of 11 and 2. It was already 12, and so I was told it might be a good idea if I get a move on. I then told him the original reason I had gone to the doctor’s that morning – my ankle is fucked. My ankle has now been fucked for the past two months, and some days, I can barely walk on it. I suggested that maybe my recurring ligament injury was playing up. He shrugged it off. Take two ibuprofen for the pain, he said. And off I went, into the great blue, looking for some radiologist or other.

The only upshot is that the 4-mile-distant radiology shack was staffed by a friend today. Who gave me cigarettes – the perfect complement to a chest X-ray. Cheers, Stuart.

I’m not entirely sure how to start this entry off. Nothing hugely important has happened – we went out for a drink, but the queue for the club we had intended to go to was too long, so I thought I’d call it a night – and there haven’t really been any developments in my health. So why the fuck am I feeling so desperate at the moment, when for the past three months at home (the time that I thought my mind would really go into overdrive and finally send me spiralling off into a ditch of my own self pity), I’ve been perfectly happy? I suppose that’s something for me to ponder on, but more than anything, I suspect that having a job I enjoyed surrounded by people who had no idea about my problems, who would never have any idea about my problems, was good for me. But now I’m back here. The people know what’s going on, and yet everything seems to be carrying on as normal, only I’ve changed.

Unusually for me, I don’t have a cigarette hanging out of my mouth as I write this, and my humour isn’t in gear tonight to put this entry into a nicely irreverent tone. That’s not to say that this is going to turn into a full on barrage of self-doubt, but damn it, I’m going to try my best. Right now, though, I’m having problems. I know that any Psychology student could turn round to me and tell me that I was transferring my problems into areas of my life that don’t need such due care and attention, and that really, I’m being hugely irrational about everything and that I just need to relax, but I can’t. I’m in trouble. I need help.
Next week, I have the appointment that will determine whether I need to start my first round of anti-retroviral treatment. A simple trip to the house in which I used to live ended up with me receiving a letter that has really thrown me – they’re altered my appointment, to a time two hours later than that originally booked. I don’t know why such a petty thing should bring everything to the fore, but I think having to be on the phone to the place, when the last thing I wanted to think about was my illness, might have had quite a lot to do with it. I rang them, the woman on the other end announced that she had no idea why I had had another appointment pencilled in, but I would be better to take that one as it was a longer slot.

Fair game, Cerys.

And so, it being a Wednesday, the plan was to go out tonight and celebrate what could be my last week as a drinker. But I couldn’t settle in, not even for a second. We sat there, me nursing my pint of Kronenbourg, Tristan knocking back glass after glass of Tetley’s, smoking and trying the best we could to dance around the situation, but it just didn’t work. We even tried wandering over to a troupe of first years and sparking up a conversation, but by the time we were asked politely to leave by the security staff, I had totally lost whatever vibe I had. And so, while Tristan queued for the cash machine, I took it upon myself to dutifully head home and take care of the place.

The crux of all of this is that I’m extremely, extremely unhappy. I don’t know what the hell I’m doing with my life, and I don’t enjoy it. I spend my days traipsing to town and back for no good reason other than it being something to do that constitutes exercise, and it’s something that I can do without eating or smoking (you should never eat out on the street, it’s crass, and smoking and walking were never going to be a great combination.) I’m back at University, it’s Fresher’s week, and while I should be out partying the night away, getting horrifically smashed, and turning up at 6am the next day, I just cannot bring myself to do it. All I can do is worry about how many calories I have had every day (because God forbid I get fat again), how much money I am spending and how much I can possibly save (not that there is a great deal of point, because I don’t spend what I save or put it towards any great venture), and what will happen to me when they put me on medication. And that isn’t even the worst part.

They’re not going to tell me that I NEED to go onto medication – they’re going to tell me that I have the choice to go onto medication or not. And this is not what I need, because with the way my mind is at the moment, I have a horrible feeling I might tell them where to shove their protease inhibitors and walk away to die on my own somewhere in a corner. I mean, God knows that next year, due to my unfortunate selection of housemates who all do courses that require the third year to be spent abroad, I will be living alone. So I might as well be dying alone. Most worryingly, this is the way I have begun to think of myself and my University life, and I’m about ready to pack it all in. What had started out as mild concerns about how the new semester was going to pan out have become mini-despairs caused by my own downward spiral into what could possible be, at the end of the day, the start of something resembling clinical depression. Needless to say, when the term begins, the clashes and the difficulties, any lack of understanding, and the ever present inability to relax by having a pint and a smoke, is going to make life a hell of a lot more difficult for my housemates, my friends, my partner, and I suppose least importantly, me.

I’m just not positive anymore.

PosLife.

Is it that time of year already? Oh God, it is, isn’t it. Looks like it might be time to give this thing the updating it has needed since I last put a slice of writing in. Oh well, here we go again.

It’s Friday afternoon, and after a wonderful week of work at the Yorkshire Cancer research Network (putting in data, watching the clock, and trying to avoid the evil of cake Fridays which I have just recently succumbed to), my time here is coming to an end. I think I’ve worked here on and off for about six weeks now, although, I can’t really be sure, and at some point in the middle of next week, I will be leaving so that I have enough time to pack my shite and head back to University.

Now, don’t get me wrong. I am looking forward to going back to University. Own place, usual suspects as a crowd of friends, and the opportunity to do my own cooking again. It should all be great, but there is one thing that has been playing on my mind, so much so that recently, I’ve actually been losing a great deal of sleep over it.

On October the 8th, I’m going to be starting the first course of drugs.

Now, I know for a fact that this shouldn’t really bother me half as much as it does. But the funny part is (hold your breath, it’s so worth it), I still haven’t told my family about the diagnosis. You would have thought, maybe, that it’s the sort of newsworthy nugget that would have taken the headline spot on the monthly familial bulletin. But, of course, being me, it hasn’t. None of them, not my psychotic aunt or my chain-smoking Andy Capp-esque grandmother, are any the wiser. Maybe this is the best way, who the hell knows, because when someone’s first reaction to your coming out is to stab you in the shoulder with a cake knife, you don’t really feel you can open up to them about such a subject.

The most heartbreaking thing about it is that, when I came out, my parents’ main worries were that I wouldn’t be safe - that is to say, something like this would happen to me. Worryingly, they were right. So, needless to say, not a word of the HIV has been breathed to them or anyone even vaguely connected to them.

I am tit, really, aren’t I.

So, anyway, I have told them that I’m going to be going to the doctors when I get back to ask about anti-depressants. This isn’t the whole untruth it seems - I’ve had anti-depressants on and off for a few years now, and while it’s not the sort of thing I like to admit, a little bit of chemical stimulation and intervention has often done my brain some good. And it might keep them off my back when they find me popping daily pills. All a bonus.

So why am I worried? Because outside of the chemical alterations brought about by anti-depressants, I’m not a huge fan of medication in its many forms. I don’t like the idea that something is acting inside me that I have no control over. And more to the point, when it comes down to HIV medication, there are so many things that you have to give up or change in order for them to have their full impact. I know for a fact that, for a little while, I won’t be able to drink. I just won’t physically be able to stomach and/or retain alcohol - and for a student, this will not do. My life hasn’t exactly revolved around drinking while I have been there, but hell, I’ve got drunk with the rest of ‘em, and for the most part, enjoyed it. So there’s one of my joys out of the window.

The second problem is that I will probably have to give up smoking. Now, I realise that most smokers are self deprecating about it, and desperately want to give up. Not me. I enjoy smoking. I enjoy the social side of a quick fag outside the door of a bar somewhere. I also enjoy the fact that sweet lady Nicotine keeps the hunger cravings at bay and helps me concentrate when I need it most. I also like that I have something bordering on a season’s supply of tobacco in the cupboard for when I get back. But of course, with the risks now associated with HIV and cigarettes, I just can’t afford to go adding self inflicted HIV-related cancers on myself. And so said stash may have to be sold on. Good for my pocket. Bad for my soul.

I have a host of other issues with the drugs, though. It’s not just those selfish little lifestyle changes that I resent. What if they don’t work as previously thought - what, if like a friend of a friend who is also unfortunate enough to be in this position, I’m allergic to almost every battery of medications that I’m presented with, thereby severely decreasing my life expectancy? What if they don’t work at all and I have full blown AIDS before the end of the year? And more importantly, what if I panic and turn to them, tell them I don’t want to drugs, and let nature take its course?

I can see I’m going to have to take Col for support.

So, in the meantime, have a good one. Read this and try to stay as positive as possible. I’ll cope.

PosLife.

How that I’ve finished this job and am now floating about doing odd jobs and trying to get myself organised and registered with Slivers of Time, I think it’s about time to look back on how things have been going. I have the time to write these things now, which is nice, so I might as well crack out a couple of paragraphs here.

Leaving the job has made me a much stronger person. As soon as I learned to mind my own business, it made the job a lot easier. I should probably give you a bit of insight into what the job actually entailed, really. I had to create new files for long-term diagnosed people with HIV. Which might seem like it was rubbing it in my face a little bit, and it was, but anyway. My supervisors quickly became aware of my status as I had to attend a couple of routine medicals and check-ups while I was there, and were soon trying to find me other jobs that I could be doing, just to take up a couple of hours. And they did, and so I did, and by the end of it, I had collected myself a glowing reference and a hell of a lot more respect for the service than I ever had before. So that’s nice. I also found out I can work in that sort of environment without losing the plot entirely. That’s nice, too.

So, right now, I’m trying to sort myself out with the Slivers of Time system. Interesting thing, that, selling your free hours to whatever random employers might pass your way. But now I have a lot of free hours to sell, which is nice.

But anyway, I was thinking on the bus today (I know, public transport. How common.). I’ve actually been healthier since I was diagnosed with having HIV. I haven’t had a serious cold (touch wood. Well, touch veneered MDF. It was wood once, so I’m led to believe), and the few small colds I have had, I’ve been able to get over a lot more quickly than I was previously. Having said that, I did go through a period of around a year pre-HIV infection, during which I was constantly ill and had a lymphocyte count of one. Yes, one. One lymphocyte in a titre of blood. Nowadays, we’re floating around the 300 mark, which is a lot better. I’m not recommending this as a course of action, God no, but… it’s a bit strange.

Might have to look into that.

PosLife

I found at last Friday that I finish my job in three days. The agency neglected to consider that, when you have two people doing a job that one person could ordinarily complete over a period of around two months, it’ll probably only take three weeks or so. But that’s clearly why they work for agencies. People that bright would be wasted in the Civil Service. So I suppose it might be a good time to do another update. What did I get from this job, and so on and so forth.

Well, I mentioned in my last post that I would either come out of this job a stronger person, or something resembling a gibbering wreck. Having staved off the screaming ab-dabs for this long, I think I can say it’s the former. It took me a hell of a long time to realise that you have to switch off and get on with it, and for long enough, I wasn’t happy at all. But I think maybe it’s helped me to come to terms with things a little bit better.

I know now that I don’t want to work with HIV as a disease, though. I’m not sure I could stand it. In a strange way, I guess I just don’t like the methods in which HIV attacks people. It’s a nasty, opportunistic little parasite of a virus, and from a biological perspective, it’s not something I want to include in my career. I think I might be veering a little more back towards Oncology these days. It’s a nasty disease, don’t get me wrong, but at least it’s nowhere near as terminal. And it’s where my original interests lie, so… might have to finish this course and rethink what I’m going to do. That’ll be fun in a few years’ time. Maybe it comes from not having known anyone who is fully coping and coming to terms with their HIV. I know people who have had the most aggressive forms of cancer and come out of it wiser, happier, and much more thankful to be alive. HIV just fucks you right over.

So, moving on to Monday – I’m not sure where I’ll be stationed, and I’m not sure what I’ll be doing with myself. But if I’m lucky, there’ll be a place at Jimmy’s waiting for me. Working in the STI Clinic hasn’t been fun, but it’s kept me busy, the pay is good, and it’s shown me that working with HIV isn’t something I want to do, unless opening a wrist and listening to Zero 7 albums is my idea of a good Saturday night.

Zero 7. Seriously.

PosLife.

The Universe likes to laugh at me – I’m sure of it. This morning, I got a call through from an employment agency that I had registered with last week. They deal with the NHS, which is where I want to go after my degree, and I thought it would be a great idea to get my feet under the table, as it were. So, long story short, they offered me a job. It’s in the town centre, so easy to get to on public transport, and the pay is pretty good at just over six pounds per hour. One thing’s bothering me, though.

It’s at the sexual health clinic.

So ha! The Universe strikes again. I must have been a real shit in a previous life. I couldn’t turn the job down though, you understand. Job pay, with a good agency, and a chance to get involved in a company where I want to be for the rest of my life. So, I’m biting the bullet and going in tomorrow. It’s just a filing and data entry role, which I will no doubt find unmercifully dull, but I’m determined to do well – not just so I can walk away with a pocket full of green and a good reference with which I can get a job later on. But also because, if I can get through this without going completely insane, I’m probably coping a lot better than I thought I was.

You can’t ignore the Universe.

So while it may be boring, and it may be agonising having to rifle through record after record, with the distinct possibility that I might come across my own and have to garrotte myself with a mouse cable, I’m going to have to go. It’s a job and it’s some money, after all. And maybe it’ll result in a career later. Wish me luck. I shall be filling up with coffee and ginseng. Perkifying.

God, I hope I can cope.

This could probably do with an update. Well, I’m back in Leeds at the moment, for the next four months or so. Which is nice, getting to see everyone I’ve essentially ignored for the past year or so. Another bonus is that I don’t have to visit the clinic while I am back home. I have been given what could be construed as a bit of an all clear by the Hull clinic. The visit wasn’t quite as exiting as the previous one, but it was still worth mentioning.

So, with my usual visit mate back in Poland, I managed to rope in another. We sat there, read Real People, commented on the utter pointlessness of the universe, and then watched a bit of Jeremy Kyle. After sitting there for about 25 minutes, I was called in to my appointment. They were only running 20 minutes late, I was quite impressed.

So, I went in, I sat down, and after some ado, I was given my results. I always hate the run up to getting my results. It’s the usual questions. How have you been? Fine. How is everything going at University? Fine. How was your first round of exams? Fine, tell me my results or I’ll jam a speculum down your throat and force them out of you. So, she finally came out with it. My viral load has gone up, expectedly, to around 2140. What was more of a surprise was that my CD4 levels have also gone up, to 361. She looked at me, she looked at my results, she looked puzzled, she looked away… there was generally quite a lot of looking.

After quite some time, it was decided that I didn’t need to go on medication yet. I was elated. She was noticeably disappointed. It was much like sex.

Then, the nurse arrived. It was the same nurse I had enjoyed the company of last time. The one who jammed carrot cake into me while I was semi-conscious. She’s a laugh, but I never caught her name. I was given a physical (I’ve not been given one of those since the last time I started work, in fact I had gone out of my way to avoid them. I don’t like being prodded by someone who hasn’t bought me dinner first.) I was poked, jabbed, stabbed, and hammered until it was decided that I don’t have any kind of reflexes in the right side of my body. This didn’t seem to concern anyone except me, so I was told to get the hell dressed and get the hell out. They’re a polite bunch. And it was over.

So now, I’m home. I don’t have to go on drugs until October. And I was subject of my first racist attack the other day, which was an experience. It’s all going well. At the moment, it’s hammering it down, but I’ll cope.