Blog Archives

Am I mad or is it the meds?

pillsIt’s 00:50 and once again I can’t sleep.

My insomnia has kept me up for the best part of three days in a row now, my mind is tired, my body is exhausted and yet I still can’t sleep.

I go to the bathroom to top up my water glass and I catch a glimpse of myself in the mirror, I look like death warmed up – my skin pale, bags under my eyes so big you could carry your shopping in them, and I’m breaking out in spots -my body has had enough but my HIV meds won’t let me sleep.

This has been going on for months upon months now, sleeping only three or four nights a week, the rest sat up trying to keep myself busy until it’s time to goto work. Sadly it’s become something of a routine – a routine that’s causing me to burn out.

I wish I could say that insomnia was the biggest of my concerns, but sadly it gets worse, over the  last few weeks things have been going bump in the night. I’m hearing and seeing things that aren’t there. It started off as little things, a thud in the hallway, a shadow out the corner of my eye – but progressively they’re getting more and more significant – I’ve heard the front door being hammered only for no-one to be there, giant spiders on the ceiling, I’ve even seen myself sat in my desk chair.

I’m reasonably sure that it’s not a inherent problem with my mind, so much as the medication – the hallucinations only happen after I’ve taken my meds and on nights I can’t sleep. So I think it’s pretty reasonable to conclude that they’re side effects that I’d normally sleep through – but in my perma-awake state I have to endure. What I’m not sure, however, is why they’ve only started now – nearly 18 months after I started this combination therapy.

I’ve asked my doctors to change my HIV meds before based on my sleeping issues but they’ve told me to wait it out, I’m hoping when I see them on the 17th that they’ll take the news of hallucinations and even less sleep slightly more seriously. Either that or they’ll lock me up, and if they do I hope they have wine.

Tom
UKPositiveLad

Using super-computing to crack HIV

HIV

The HIV Capsid

A team of researchers from the University of Illinois and the University of Pittsburgh have made real progress on cracking the HIV virus using super-computing power.

The researchers used the NSCA’s Blue Waters super-computer built by Cray (composed of 6276 AMD CPUs in 276 cabinets capable of 11,610,000,000,000,000 calculations per second (11.61 quadrillion, or 11.6 petaflops)) to break the secret of the HIV ‘capsid’.

The ‘capsid’ is the protein shell of the virus, it is what protects the virus until it enters the human cells and begins the reproduce which is what makes it so virulent. Blue Waters worked day and night to analyse the interactions between every single one of the 64,000,000 (64 million) atoms that make up the HIV capsid – and has helped identify weaknesses in it’s armor which will lead to new treatments in the future.

Pharmacists will be able to use this ground-breaking data to develop drugs that can target these weaknesses and have a bigger impact on the virus whilst having less side effects on the patients taking the drugs.

This is proof, that big metal computing does lead to real results – results that will help improve the life of real people. Here’s a link to the team’s page.

All the best,

Tom
UKPositiveLad

International Day Against Homophobia 2013

Photo by LewishamDreamer

It’s FRIDAY!

Today, May 17th 2013, marks the 9th annual International Day Against Homophobia (IDAHO) ((you may also have seen it written as IDAHOBIT (International Day Against Homophobia, Biphobia and Transphobia)).

IDAHO is a day where we should reflect on gay rights (or the lack there of) both home and abroad – something some of us can be guilty of forgetting about sometimes.

We have issues here the UK that’s for sure, we’re still fighting for the right to marry the person we love  (the ball is rolling, but the fight is far from over) and 5 to 7 percent of the LGBT people surveyed in the UK say that homophobia is very widespread. But things are getting better all the time – one day we will have marriage equality, we will be seen as equals next to our straight brothers and sisters.

But our problems here in the UK pale in comparison to those abroad. In Uganda politicians are falling over themselves to progress their ‘Kill The Gays Bill’  which would, as the name suggests, enforce death penalties on people engaging in ‘same-sex relations’ and other penalties for those supporting these “deviants”.

Meanwhile in Russia the Moscow authorities have denied a request to carry out a ‘gay pride parade’ in the city. This apparently falls under “compliance with ethics” as to allow such an event would not be patriotic, it seems “Moscow does not need such events”.

We may live in 2013, we may have equal marriage in an ever growing number of countries including several US states, we may have cars that drive themselves and space tourism – but apparently it’s not alright for everyone to be who they want to be. That’s so sad.

This IDAHO please spare a thought for couples all over the world who’re having to conduct their relationship in secret for fear of persecution or even death, then get angry – together we can make a change. If you are one of those people, stay strong, hold out – don’t let people tell you who you can and cannot be – you have every right

Official IDAHO website: http://www.idahomophobia.org/

Kindest Regards,

Tom
UKPositiveLad

It Starts With Me, what about you?

IMG_2040Good afternoon guys and gals,

You may remember a week or so back I posted about a new HIV awareness campaign in England called ‘It Starts With Me’ – designed to educate people about HIV, how it’s spread, how it’s prevented and what they can do to fight HIV.

Well the campaign is really in full swing now, with events and awareness materials rolling out across England.

Yesterday I returned from a trip to Berlin with my friend Anthony to find a ‘It Starts With Me’ t-shirt waiting on my door step. So I popped it on and took a few snaps, you’ll probably see me at a few events up and down the country – including pride events wearing it, talking to people about their attitudes towards sexual health, testing and HIV.

Some quick HIV related facts from the It Starts With Me website:

  • 1 in 4: The number of people with HIV in the UK aren’t aware that they have it
  • 10 years: how much shorter your life could be if you delay testing
  • 8 in 10: gay men get HIV from someone who doesn’t know they have it
  • 25-29: the age group in which the most gay men test HIV positive
  • 96%: Treatment for HIV can make you upto 96% less infectious to others

Please make sure to head over to the It Starts With Me website to find out more about HIV, and how YOU can stop it in its tracks.

Peace out!

Tom
UKPositiveLad

Just Get Tested Already

Morning all,

On a daily basis I get maybe thirty or forty emails from people reading this column or people visiting my website. Some are asking for support, others asking questions about HIV, a few are even hate-mail (the crazies are everywhere) – and an alarming number telling me that they’ve never had a HIV and/or STI (Sexually Transmitted Infection) screening.

Of course I always handle these messages sensitively. I suggest that they should go and book themselves in for a full STI screening and even provide a link to the Terrence Higgins Trust website where they can pop in their
postcode and find a clinic near them. But the whole exchange often leaves me baffled and concerned. Many of these people are in their mid-to-late twenties – how they have got this far in life (presumably having sex along the way) and never having had a check up?

Is it simply a case of sticking their heads in the sand or is there something more going on here? Having spoken to some of them in more depth there’s definitely some ostrich like behaviour for sure, for some ignorance really is bliss, if you don’t know something is wrong then you don’t need to worry about it – but for others it’s a fear of the testing process itself, and this can only be due to lack of education around the topic.

Going for a STI screening really is not that big a deal. Honestly. I went for one only the other month (I go every six months – and so should you if you’re sexually active). Here’s what happened:

I arrived at the clinic at about 10am. I sat around watching Jeremy Kyle in the waiting room until I was called through by a doctor. They ask you a few simple questions:

Why’ve you come in today? “routine testing”,
Do you have any symptoms? “none”,
Any pre-existing conditions? “HIV-positive”.

After that I head back to the waiting room for a couple of minutes for a spot more Jezza (turns out he wasn’t the father). Then a nurse calls me through to one of the other rooms. She takes a couple of throat swabs (say “ahhhh”), a tiny swab from the end of my penis (it does pinch a little, but it doesn’t hurt), and a swab from my ass.  Another nurse comes into to take a couple of vials of blood and then I’m given a little bottle to go put a urine sample in. I’m good to go. That’s it! takes about 45 minutes, one hour tops. They’ll text me any results in two weeks time.

(If I didn’t already know that I was HIV-Positive they would have also offered a HIV Rapid Test, which gives you a result in 15 minutes)

It’s incredibly important that each of us get regular STI screenings. Most sexual health charities recommend twice a year or more frequent if you’re more sexually active. Whilst you may not have any symptoms you may still carry any number of infections without even knowing it. I myself had absolutely none of the ‘flu-like’ symptoms often associated with HIV and only found out at one of my regular screenings.

Getting checked out doesn’t just mean that you’re looking after yourself, it means you’re showing respect and looking out for those who you sleep with – after all you’d hope anyone you slept with to have been checked recently, wouldn’t you?

So if you’ve never been checked out, or maybe it’s been far too long since your last test perhaps today’s good deed could be calling up your clinic and booking yourself in for a little MOT. Don’t know where your nearest one is – sorry, that’s no excuse. Head over to THT.org.uk and click ‘Sexual health’ to use their ‘Service Finder’ tool.

Take care,

Tom
UKPositiveLad

Welcome to Club Insomnia

insomnia-alarm-clock

It’s 04:44am. I’m laying in bed. Wide awake.

I can hear the distant whoosh of cars on the main road, the hum of fridge freezer, that irritating high pitched noise that you’re not sure if it’s your ears or something buzzing or something else making it, and most disturbingly of all – my own thoughts.

I’ve been trying to get to sleep since midnight. I did all the right things – I had a relaxing bath, drank some water, took my pills, turned my phone off, turned my computer off, turned the lights off and got comfy. Sadly the sandman didn’t want to pay me a visit.

Laid there in total darkness I tried to clear my mind of all thoughts. But as soon as I’d done that they flooded back again. What am I going to do about money? What’s going on with that guy I like? Did I have plans for tomorrow? What do I need to do for work tomorrow? Oh god work tomorrow. Did I put my headphones on charge? Did I take my meds?  Whilst all the time thinking “WILL YOU JUST SHUT UP – I NEED TO SLEEP”.

At 3am I  realised sleep clearly wasn’t happening and at 4am I completely gave up all hope of achieving any sleep.

The medication I take to control my HIV, ATRIPLA, is made up of three drugs Emtricitabine, Tenofovir and Efavirenz. Apparently Efavirenz is widely know to cause insomnia – I’ve never been the best sleeper, but I can’t imagine that this is really helping matters. Some people have suggested that I move to another drug combination that doesn’t include Efavirenz but these aren’t available in single pill from the NHS and I don’t know how well I’d cope with multiple pill treatment – plus I don’t really want to burn my bridge with ATRIPLA if I don’t have to.

It’s now 5am. I have to get up for work at 7:30. Do I try and sleep for that 150 minutes, or do I just get up and go into work early? Whatever I do, however, I can confidently say that my Thursday will be a complete write-off. I’ll be heavily reliant on bad instant coffee to keep me awake at work, but it won’t be proper awake, it will be Zombie Tom – lights are on, but nobody is at home.

I really envy people who, like my pets, can just put their head down and go to sleep straight away. That’s never something that’s worked for me, I’ve always found it hard to get to sleep and it’s just getting harder as the years and pills continue.

Here’s a quote from  D.D. Barant that seems appropriate:

“I’ve got a bad case of the 3:00 am guilts – you know, when you lie in bed awake and replay all those things you didn’t do right? Because, as we all know, nothing solves insomnia like a nice warm glass of regret, depression and self-loathing.”

I hope you have a better Thursday than I’m going to.

Best wishes,

Tom
UKPositiveLad

Last week’s Gaydio chat – now available to listen to online!

Screen Shot 2013-01-24 at 09.33.07Ahoy-hoy,

Last week I was in Manchester from Thursday to Sunday. I attended a great event run by LGF, and got a chance to visit Chris & Emma in the Gaydio Studio!

It made a nice change from chatting with them on the phone! I spoke about my big disclosure, the ‘functional cure’ story concerning 14 patients in France, my appearance on BBC World News and the first birthday of rucomingout.com

As before you can download and listen to the show in MP3 by clicking HERE :)

If you want me to appear on your show please don’t hesitate to get in touch using the contact page on this site.

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Tom
UKPositiveLad

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April 2013 Issue of ATTITUDE Magazine Out NOW

attitude-april-13Afternoon all,

How’re we all doing? What’s that? Speak up I can’t hear you!

Just a little blog post to let you know that the April 2013 issue of ATTITUDE Magazine is out now in digital format, available on iPad, iPhone, Android and pretty much any other device going – you can get your copy here. For those of you who like something to hold in your hand it’ll be on new-stands from this Wednesday 6th March.

This issue our cover star is the stunning James Franco talking about cruising bars, leather and the Wizard of Oz. Zac Efron’s new film ‘The Paperboy’, lots of men in swimwear and my coming out piece. Yes that’s right – this month is the first month you’ll see my face in ATTITUDE Magazine, well all of it anyway. I talk about my journey so far, the support I’ve received and the highs and lows of my short time so far living with HIV.

Check it out!

Tom
UKPositiveLad

Here I am, this is me. The real UKPositiveLad.

Screenshot 2013-02-25 at 10.52.57

Hello there,

If you follow me on Twitter (and you really should) you may have noticed that I changed my avatar, name and posted a photo of myself. Yes, all of my face, not a quarter of it, or obscured by a book, or an owl or something.

I’d always planned to reveal my true identity on the 1st March, just a couple of days ahead of my Attitude Magazine column – on the day I headed to Brighton for the Student Pride weekend I’m attending. But last night I was over with a friend, I was talking about the whole thing and getting more and more nervous. Then one follower on twitter suggested I should treat it like a plaster and just rip it off, get it over and done with quickly.

After a little thought, and a large Gin & Tonic I did it. I thought “She’s right. To hell with it. 5 days isn’t going to change anything” and posted “Hello, my name is Tom, and I’m @UKPositiveLad” (see screenshot of tweet to the right).

Photo 2013-02-25 11

To say the response was positive is putting it mildly. I only had my personal phone on me, and not my UKPositiveLad mobile, but when I came home I saw that I’d received 53 DMs, 503 mentions and loads more RTs and Favourites. Completely overwhelming.

I want to thank you all for your kind words, support and encouragement. It’s been quite a journey from being diagnosed (not all that long ago really) to starting the blog as “Sam” through to coming out as Tom.

 

Fear not though, I’m still the same blogger and twit(terer) you’ve come to know over all these months – I’m just doing it with a face and my real name now. It’s pretty liberating.

I look forward to speaking to you all soon, I’m going leave you all with a little YouTube video (a bit camp) but the song pretty much sums up how I’m feeling at the moment!

Tom
UKPositiveLad

Tuesday morning on Gaydio talking HIV – listen again!

Screen Shot 2013-01-24 at 09.33.07Afternoon,

Tuesday morning I was on Gaydio again, doing my HIV guest spot.

If you missed it I was speaking live on-air to Chris and Emma about the Health Protection Agency (HPA)’s HIV in the UK 2012 report, about disclosing my HIV status and my upcoming reveal.

As before you can download and listen to the show in MP3 by clicking HERE :)

If you want me to appear on your show please don’t hesitate to get in touch using the contact page on this site.

Sam
UKPositiveLad

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