'BETTER SAFE...'As I lay stretched in Hyde Park enjoying the sun with my partner, one thing kept lingering in my mind and this was the issue of treatment.
None of us should ever forget how we were before we started treatment. Some of us could not even walk or utter a word. Each time relatives and friends visited me when I was ill in hospital, all they said was: “Ah, Simon won’t last this week. The red light has clearly bleeped.” But here I am now five years down the line because of combination therapy.
For me treatment is non-negotiable. I take it very seriously. If treatment is not properly handled you start developing ‘Weapons of Mass Destruction’ in your own body if you’re not careful. There could be serious resistance and the virus could rebound if you are indecisive about treatment or play games.
But recently, with the success of combination therapy, I am coming across more and more people who don’t take their treatment seriously and seem to want to stop taking their Highly Active Antiretroviral Therapy. This disturbs me greatly because some of the reasons people give are flimsy, such as “treatment is taking control of my life,” “treatment is a bore”, and most worryingly, “I feel cured.”
Others are genuine, and I do sympathise as I sometimes feel the same. Ones that I sympathise with are when people say they’re getting worried about the long-term side effects of the HIV drugs, are experiencing fatigue that they attribute to the drugs, or are going through changes in body shape due to fat redistribution.
I worry sometimes about the chronic fatigue I have been experiencing lately, and ask myself if it’s good to be taking treatment every day. I can’t even work out in a gym or swim as I used to, but I think the benefits of treatment outweigh those for stopping. I also realise that the bedroom is now my gym, where I never fail to work out, much to the delight of my doctor.
Having taken all these into consideration, I still feel it is right to continue sticking to the strict treatment guidelines. I am now 38 years old. In the last 10 years I have witnessed lack of treatment or non-adherence killing friends and acquaintances, and this has actually strengthened my resolve to live longer.
We can’t afford to lose what we have gained over the years in terms of reconstituting our immune systems. Personally, I feel guilty and unfair to my children if I give up treatment because there will never be somebody they will once again love and call daddy.
With so many drugs on the market, people also want to change their treatment just for the sake of trying something new. I was recently approached by a man and woman who wanted my opinion on the new drug Fuzeon or T-20. They both stated that because the drug was new, they thought about trying it out. They also said they had been on the old regime for a long time and just felt the need to make a change.
I just asked one simple question: “Are you going to cope with the daily injections?” The answer was a ‘no’ and this confirmed for me that they were lacking information and were complacent about their treatment. These are people who are on very simple regimes of two tablets, twice-daily, and the pill size is very manageable.
I have been on such a regime for five years. I know that what suits me will not necessarily suit others as well, but it’s a good regime and manageable. I intend to stick to it until something goes terribly wrong.
It is also important to take a keen interest in the activities of organisations like NAM, HIV i-Base and others that keep you well-informed about drug treatments. Sometimes when I attend the monthly NAM forums, I think professionals from the clinics will soon outnumber us positive people. But what’s so good about these forums is the opportunity to collect information from people who have just been to conferences and meetings.
So my dear readers, please don’t play games with treatment.
