SHARE

It’s July 2013 and we’re rapidly approaching the second anniversary of my HIV diagnosis and I’ve been on treatment for almost as long now.

https://i2.wp.com/www.infekt.ch/updown/images/Eviplera.jpg?resize=250%2C140When I originally started treatment at the end of 2011 I was put on ATRIPLA, a one-a-day pill that combines three drugs – each one fighting HIV in a different way. That was fine until recently, then I started experiencing alarming side-effects including insomnia, hallucinations and mood-swings. My doctors changed me to a new drug, Eviplera, which once again is three drugs in a one-a-day pill.

My response to the treatment has been tremendous, I was ‘undetectable’ in only a couple of months and my CD4 has been on an upward climb ever since. So that’s the physical side of things taken care of. Great.

What the pills don’t do, however, is help with the psychological impact of living with HIV. In fact in some ways, for me at least, they make things worse. I hear people say things like “Oh HIV is just one pill a day now”, and on the surface that can be true – but things are so much more complicated than that.

The pills serve as a daily reminder that you’re HIV-positive, each night I look at that pretty substantial pill and think about what it means, the fact that this is forever. You also end up surrendering a little piece of your brain to keep track of your meds, they’re never far off your mind.

Have I remembered to take today’s pill? Have I eaten enough calories to go with it? Have I accidentally taken two today? Have I got enough on me to last until my next appointment? Oh crap I’ve gone out for the night without any! Where’s my open bottle of pills? Must remember to fill up my pill sorter! Must remember to fill up my keychain pill-box!

Tonight for example I’m off to the boyfriend’s house after work, then we’re both off out for drinks, I’ve packed an overnight bag so I can stay at his afterwards too. I thought I had spare pills on me, but I’ve checked and I don’t. This means I either have to go back to my house after work then onto his, then onto drinks – or hope that I’m compos mentis enough after drinks to go back home to mine collect the pills and then go back to the boyfriend’s house. Argh, it’s a proper ballache.

https://i2.wp.com/www.lifevesting.com/blog/wp-content/uploads/2009/06/ball-and-chain.jpg?resize=218%2C322Some of you might be thinking “Why not just skip tonight? Surely it won’t do you any harm.” – one night missed probably wouldn’t do me any harm that’s true, but then I’d start justifying other missed nights – skip too many doses and you run the risk of the HIV building a resistance to your medication and then you’ll have to change meds (and trust me, that’s not a pleasant experience).

The HIV medications we have in 2013 are a far cry from those of the nineties, they’re cleaner, simpler, have less side effects and dramatically increase the life expectancy of someone with HIV – without this one pill a day I have no doubt that I wouldn’t be alive now. But, people need to realise that it’s not like popping an Asprin when you can be bothered, it’s essential that these drugs are treated with respect – they need to be taken every day, at the same time, with the correct calorie intake otherwise they won’t work properly and your health will suffer.

HIV Meds – the life saving treatment that I’m so grateful for is also the thing that drives me round the twist. Life’s complicated sometimes isn’t it?

5 COMMENTS

  1. You don’t really need to take them at the same time. Well, some of them you do, but Atripla, you can be a little out with your timing. Personally, I find, if you take them at the same time, it just builds a habit, so your less likely to forget to take them.

    But yes, it’s a pain in the arse having to take them. It’s even worse if you travel overseas. It becomes a case of, “have I taken todays dose, what is today, is it yesterday, is it tomorrow, have I already missed one”. Then there’s the concern. “I’m transiting in Singapore, will they be fine with this”. Or the disappointment “oh well, I can get that cheap flight, it goes through Qatar and they’ll arrest and deport me if they find these drugs on me”.

    Taking HIV medications is not easy. It gives you quantity of life, but to me, it’s debatable whether it gives you quality. It’s certainly not diabetes. It’s more like a nasty form of Cancer. You have to have the pills to live. No amount of diet changing or exercising will make you better, just the toxic sludge you have to pump into your body every single day.

    It does give us something though. A longer opportunity to love, to cry, to fuck up, to be happy, to be sad, to be human, to live. We might be married to HIV, and it might just well be till death do us part, but we still have our dreams and desires. So it’s not all bad really. In fact, I would say, having HIV has given me a whole new perspective on life. Thirteen years on and I am more resolved then ever to experience life in all it’s colours. I will be the greedy one having my cake and eating it too.

  2. Just to let you know, I have tweeted your blog as well as shared it on FB. Here is our info if you wish to connect further. Thx for sharing your story.
    Wishing you well,
    Natascha Proost
    Africa Centre for HIV/AIDS Management
    STELLENBOSCH UNIVERSITY | Private Bag X1 | Matieland 7602 | RSA
    T: +27 21 808 9465 | Cell: +27 (0)76 582 10 15
    E: natascha@sun.ac.za | W: http://www.aidscentre.sun.ac.za
    FB: http://www.facebook.com/aidscentre.sun.ac.za
    Twitter: https://twitter.com/Aidscentre
    Donate: http://www.givengain.com/cause/3831/projects/11876/
    Blog: http://aidscentre.wordpress.com/2013/06/24/madiba-reality-surpasses-the-dream/

    • Much of what you say resonates for me too. I’ve been diagnosed for 18 years now but only on meds for the 5. Like many the stress of remembering to take my pill at the same sort of time each day was incredibly stressful. I now take mine when I wake up after I’ve showered. It is part of my morning routine and allows Nero take with breakfast to ensure I. Combine with calories.

      Most recent results were 1487 CD4 which is my highest so far. Now I need to address my cholesterol though

  3. I totally empathize with what you are going through. I am surprised by your reaction to Atripla though. Many of my patients are completely fine with it. I think the way you stress over your medications is a good thing. Don’t get me wrong. What I am saying is that you are obviously responsible and taking your own health seriously. I know of many people who can learn this remarkable trait from you.

LEAVE A REPLY

Please enter your comment!
Please enter your name here