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Sex, drugs and sausage rolls: London life, love and other random stuff

When failure is not an option: World AIDS Day 2011

with 20 comments

Image: Alert on health monitor

A blip on the health front reminded me why I can't afford to be complacent.

When you’re HIV+, blood tests aren’t anything out of the ordinary. But, sitting in the queue at the hospital last Monday, looking down at the form I’d been given, two words hit me like a punch in the guts:

‘Treatment failure‘

I shouldn’t have been surprised, really. Looking back, the signs were there: Night sweats, diarrhoea, low energy, sleeping all day, unexplained rashes, various other niggles and twitches. I had become complacent about my continuing good health. I treated the ‘niggles’ as separate incidents and didn’t consider the bigger picture, when really, my body was jabbing me frantically in the side saying “pay attention to me.”

However, before you all picture me getting rushed off to an isolation unit and wrapped in cling film in case I catch a cold, let’s backtrack for just a sec. ‘Treatment failure’ is not the same as say, ‘organ failure’. It just means the meds aren’t doing what they’re supposed to. There are other options out there, far more than in the 80s and 90s, thanks to the men and women of medical science and their never-ending quest to find new ways  of fighting the virus.

But it was still enough to raise my viral load above the ‘undetectable’ level for the first time in almost four years, and put a worried look on my doctor’s face.

Now I’ll admit I’m one of the rarer cases, but I’ve never got on with those bloody pills from day one. Over multiple experiments with different combos, the side effects have been constant, varied, and always unpleasant. The first regime sent my cholesterol soaring to 6.5 (not great for a then 28-year-old), the next one gave me a level of insomnia that would leave me awake for four days at a time, the one after that gave me the shakes, and the latest hasn’t worked at all.

I’m now back on the regime with the four-day insomnia bouts while they figure out what they can give me now. It’s a waiting game.

Is it manageable? Yes.

Is it fun? No.

Do I like worrying that, despite our stringent safety measures, medically speaking, I’m more infectious to my negative boyfriend with a raised viral load? No. It’s excruciating (by the way, take note all you idiots who don’t get tested regularly. Untreated HIV makes you more infectious).

Am I looking forward to a month of side-effects on the old drugs and possibly more when I get a new regime? Absolutely not.

For the first time since I got diagnosed, I’m resenting having HIV. With all these copies of the virus running riot in me, I feel somehow ‘dirty’ inside. I resent the side effects, I resent taking the pills every day. I resent the fact that my body is now so full of chemicals my sweat turns my white bedsheets yellow, I hate the blood tests, the needles, the paranoia when I cut a finger and I don’t have a plaster to hand*. It’s a choice I make to be so cautious, but it’s grinding me the hell down.

But most of all, I just want to make sure the person I love never goes through all this himself; which means no more messing about with my regime. Side effects I can cope with. Bad health and being infectious to my partner I can’t. So I’m staying on the old regime for now.

I’m not a saint. I’ve played my part in the onset of this blip and it’s kicked me into touch. I’ve been lazy with keeping appointments recently. I became complacent that the pills were doing their job. I’ve gotten ‘used’ to being healthy. I guess what I’m trying to say is that if you take care of your sexual health, respect yourself and stay informed, you don’t need to go through all this. HIV isn’t the greatest threat to your sexual health. It’s ignorance.

To quote a good friend Mike, (@LondonVoiceOver on Twitter): “Those of us who live with it and thrive may inadvertently send the signal that it’s no great shakes. It is, and no one needs to catch it to prove a point.”

World Aids Day is on Thursday December 1st.  For more information, visit www.worldaidsday.org  or www.HIVaware.org.uk

*please see comments for medical information on this

Written by guy_interrupted

November 28, 2011 at 2:59 pm

Posted in Uncategorized

20 Responses

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  1. Kristian,

    Not only you are a role model to me and many others but also a big ray of hope that good men exist in the gay world and they have the strength, the love and the honesty that this world needs.

    I am going through a challenge of my own but I know I will survive and you know why I know this? I know this because I know if you can fight every battle with a smile then so can I cos in some silly way you are my friend and I will never let down my friend by giving up on my battles!

    The More I know you, the more I read you – the more I am proud of you and universe for creating you in this world! Thank you for being a part of all our lives!

    Regards

    Szebastian

    Szebastian

    November 28, 2011 at 3:06 pm

  2. Thank you for your blog. Although I do not have HIV myself, I know a number of people who do and sharing yourself with your readers gives them hope and a life lesson too. All the best from Buffalo,New York.

    Paul

    November 28, 2011 at 3:10 pm

  3. Great blog, puts HIV into perspective. Worring times for the youth of today. When you have two teenagers that are starting to explore sex and relationships. Maybe I am just an over proctective parent. Keep up with making ignorant people aware.

    Anne Jamieaon

    November 28, 2011 at 3:21 pm

  4. Kristian, It always an honour to be able to read your honesty and true perspective, You well know that there as so many out here supporting you, okay we may not be in your face tweeting every day or see you face to face but it does not mean we think any less of you and are here Always!

    You well & truly took over the Baton from Our Great Friend Clint & also at this time I think of Kristian D as I support THT in memory of them both. I still do not feel that enough is out there for young people IF only HIFY had continued, we need a Role Model that youth will identify with, remember the book we were so close to getting it off the ground. Awareness first and then consequences and dealing/coping, we need to keep getting the message out and all were that Red Ribbon to Stan Up!

    Thanks! from a loyal friend John

    John B Sheffield (@jaybs)

    November 28, 2011 at 4:33 pm

  5. Kristian – yet another great piece. Thank you for sharing your personal story of the impact of HIV. It is no joke and it is important to get the mesage out again and again and again.

    Keith Winestein

    November 28, 2011 at 5:27 pm

  6. I read your recent blog and saw a lot of me in what you said esp abt being complaicent. I have been lucky I have had no side effects but having to change my regime is always back of my mind.

    When you described how you read treatment failure and how it kicked you was the same when I saw the HIV+ in big read pen on my file before the nurse could tell me, not nice esp just before the holidays.

    But as you say, times and treatments have changed and I am optimistic.

    Keep up the blogs, I really enjoy reading and hope the next few months are not as horrible as you fear and hope you can enjoy the hoildays.

    will

    November 28, 2011 at 5:59 pm

  7. Great Article.

    It is easy to become complacent when you’re healthier than you have been in a long time and things are going good. Speaking from personal experience here. I take my meds before I go to sleep every night, but if I go out at night and get a little too drunk, I sometimes fall asleep when I get home before taking them. I say to myself it’s just one does I’ll be fine, but then it happens a few weeks later and then a few later again. Taking stupid risks with my health.

    Hope your doctor finds a treatment that works for you with the least amount of side effects possible.

    I want to apologise for suggesting the sweats could have come from TB on Twitter – should think before I speak.

    Derek

    November 28, 2011 at 6:42 pm

  8. Great post, as always. Thanks.

    Can I just refer to one comment you made: “the paranoia when I cut a finger and I don’t have a plaster to hand”. I wrote about how HIV is transmitted in a blog post this time last year at http://www.se17.eu/health/game-of-risk-how-to-keep-yourself-safe-from-hiv

    HIV has great difficulty surviving outside of the human body; it would presumably be only a very small amount of blood, which dries quickly, and once dried, the virus will be dead.

    (I’ll assume you don’t mean accidental amputations, which leave pools of blood around, and which could be infectious.)

    In addition, contrary to popular belief, you usually need a relatively large amount of blood to infect someone; a trace amount is not normally enough. By “normally”, I mean with people who are receiving treatment. Where your treatment may be defined as not working correctly, your viral load is nevertheless far lower than anyone with untreated HIV.

    Finally, any virus which did exist would have to have a route into someone else’s body. How would it get in? It can’t get through unbroken skin or even skin which has scabbed over (the scab forms a barrier), so Unless they cut themselves and pressed the wound onto your blood, it can’t pass through. Even if they licked the blood, it’s very unlikely they could be infected, as saliva kills HIV.

    So, don’t worry too much about finding a plaster any quicker than anyone else would – it’s not nice to leave blood around, for sure, but it’s not a great risk.

    elliot herman (@els76uk)

    November 28, 2011 at 6:52 pm

    • Thanks, Elliot. I do know this, but the knowledge is strangely not enough to stop me beating myself up! In fact I do go on to say in the post that this paranoia is self-enforced and entirely of my own making. I’m often (gently) chastised my friends, family and loved ones for being over-cautious in matters like this, and I totally appreciate you clarifying things for the readers from a medical perspective. Big love x

      guy_interrupted

      November 28, 2011 at 10:33 pm

      • The paranoia is also not helped by the prejudice (however well-meaning) of friends/family. Remember being told by parents they were worried about me getting a cut whilst babysitting cousin’s new daughter. Eek.

        Stevo

        December 19, 2011 at 8:29 pm

  9. I’m not on meds, not yet anyway, and have my own demons to come to terms with over that hurdle. However, I do find it refreshing to read your unbiased account of life with HIV – I tend to find the darker side of life with HIV tend to be white-washed out of campaigns in order to reassure the majority that everything is ok; your not going to die; the med do work for the most part. but they never mention how things taken for granted now become major issues in your own mind, and that half the battle isn’t so much reassuring others, its being able to reassure yourself as well.

    so thank you.

    Ant

    kidwithnoname

    November 28, 2011 at 7:30 pm

  10. Wow. Such a personal, yet informative, piece of writing.
    I think HIV is not so much in the general consciousness these days which is a worrying position to be in. I know that there are people out there who don’t get tested, who aren’t aware of their status, and that scares me but also makes me a bit mad.
    I always make sure I’m tested regularly and wished that others would too. I’m not promiscuous and I’m not scared to death that, by having an ‘encounter’ with someone, I risk becoming infected myself. But I am careful and hope that people reading this will take something from it and know that we can help ourselves.
    Thank you for such an insightful and honest account – there is no bigger or better role model than you.

    Keep strong, and keep well,

    Tony

    NCLTony

    November 28, 2011 at 7:37 pm

  11. A great post. Your honesty is inspiring.

  12. A timely post and worthy reminder that if you are old enough to engage in sexual activities you should be responsible enough to take care of yourself and your sexual partner(s). I hope more people read this post and will reference it in my blog on World AIDS day.

    BosGuy Blog

    November 28, 2011 at 10:28 pm

  13. I love you, always yours xx

    claire mackaness

    November 28, 2011 at 11:15 pm

  14. An fantastic read – you have a way of making me understand things so clearly.

    I have friends with both addictions and HIV. And whilst supportive, never understood why! After reading your blogs I truly understood what they were going through – something they were unable to do.

    Look forward to reading more and being inspired by a stranger

    Take care and look after yourself x

    mastoner72

    November 29, 2011 at 8:16 am

  15. [...] Johns – aka Guy Interrupted – has written a required-reading post on his blog about the vagaries of living with HIV, and why we must never grow complacent about [...]

    Today | Declan Cashin

    December 1, 2011 at 1:13 pm

  16. I’m so sorry you are sick….this just makes me so sad. Why haven’t they found a cure or a better way to treat this horrid disease? :( I just found your blog and wish I had more time to post but just wanted to stop in quickly and tell you that I hope you are feeling better soon.

    Jody

    December 1, 2011 at 3:14 pm

  17. Viral loads can become detectable as a result of a rogue test – I know, I’ve been there. How many tests have they done/repeated where its been more than 100? Detectable isn’t a basis for panic.

    Sure, it sucks that you have side effects – have they tried you on atripla or a truvada/maraviroc combo? I have no problems with either

    BigAl

    December 2, 2011 at 4:05 pm

  18. Thanks for your post and I am so sorry to know you are suffering. I think I am a bit like you and become complacent but that is not a bad thing if you are feeling well. Taking daily pills and visit your doctor regularly become the norm and one of the other duties you have to do on your daily existence. I think the complacent origins in tryng to keep a healthy mind when living with a cronic disease that you don’t know how is going to develop too. I also hate myself for being sick but I only partiality assume the responsibility for it; and only because I belong to a minority high risk group, nothing else. I hope you feel better soon and I hope they can find a treatment less painful to you. With Love Miguel

    Miguel

    December 6, 2011 at 5:28 pm


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