I am taking three types of drugs at the moment in two pill formats, one is Sustiva which is my Efavirenz and the other is Truvada which is a combination of both Emtricitabine and Tenofovir. They are not bad sized pills and quite easy to swallow so taking them is not a problem.

Well, I stopped eating around 9pm last night just in case the tablets made me sick.  There is nothing worse than bringing up your entire stomach content as it leaves you feeling worse than ever, so I am erring on the side of caution tonight.

It was just over and hour ago from taking them along with my regular pills that I started to notice a slight tripped-out feeling, as though I were coming up on them; that pleasant feeling you get on a good night out with a little drug-induced help!  So, at that stage I thought it best to try and get some sleep just in case that trippy feeling turned into a drunken room spin state, you know that feeling when you go to bed and you have to sleep with one foot on the floor to stop the room from spinning?

Now this is where it all changed!  By this time all of the lights were out in the flat, but we all know our way around our environments in the dark and even when a little inebriated.  Last night I felt extremely disorientated: I knew where I was in the flat but had to aid myself with the walls and furniture to get in to the bedroom and finally into bed.  When I got to the foot of the bed, I had to let go of the wardrobe to turn around and get on to the bed, That was my most frightening stage because I fell on to the bed, feeling as though I had missed my footing.

It was my partner that taught me to always embrace these feelings in order to turn what normally would be a problem into something positive.  Problems that invoke panic can make the problem worse, but positive experiences you can learn by!

I finally got into bed with the covers over me and it did not feel like I was in bed at all. At one stage, I had to reach out to feel for the wall to make sure that I was not only in bed but in the position that I regularly lay in (that was a comfort and safety thing).  I inclined the head of the bed as I normally do but this time a little higher, not quite sitting up but more ‘propped up’, so that I was not laid out flat.

I was half awake for most of the night and this was a new experience for me. I am able to remember vividly most of the night and it was not all bad.  I can only describe the nights events in patches as at stages I must have really drifted off in to something quite deep yet very relaxing; I wish I had been in that place all night.

It is going to sound really strange for anyone who has never been in that slightly high state and probably will not understand.  It was as though I had been picked up by something and placed in a large open field or a tunnel of air, all around me was empty, yet I felt extremely cushioned and protected.  I know I was suspended because at one point, I reached out to touch the wall and could not feel anything.

As I acclimatised to the feeling of being suspended, I slowly moved down this imaginary shaft of air and then I must have put up some kind of resistance against the feeling because I suddenly felt as though I was being pushed on to my left side. I realised that I was not being pushed but instead that I was turning around a corner. It did not take long to get used to this feeling and I embraced it.  All of a sudden I stopped feeling anything, which must have been the time when I finally fell in to a deep sleep.

I experienced this a few times in the night and that must have been because at several times I awoke to use the bathroom.

This morning when I woke, I felt that I had been spark-out all night but thankfully without those dancing aches and pains.  Let’s hope that the next few weeks are going to be the same and, in all honestly, if those side effects do not go away, then I am happy to keep them, with the hope and challenge to be able to take better control of them.

If anyone is going through this kind of starting point, whether it be a new drug regime or additions to an existing one, then I can only suggest: embrace the feeling, do not be frightened by it and use it to your advantage… enjoy it!

It has got to that stage now where I have time to think what is right for me in the way of antiretroviral medication ARV’s, also known as ‘combination therapy.’

I am looking at it from the view that if I leave it any longer, then I will not have the opportunity to look at the different possibilities; as one particular regime may be right for one person but not always for someone else. In that respect, I need to consider what best fits in with my lifestyle, not just about what possible side effects there could be but also the type of regime; how many pills do I need to swallow? How big are they? Do I need to take them with or without food? A few things to think about then.

A common consideration for starting antiretroviral medication maybe based on the CD4 count being between 300 and 350. At present, I am only just above that, 360, but I think all the time that I am well, despite close to the CD4 count that would typically trigger the introduction of an antiretroviral drug regime, it gives me time to think about and research what medication is available for me. Times have changed dramatically and today’s choices are far greater than ever before. Specialist HIV Consultants are more knowledgeable and have a better understanding of which is the right medication for an individuals needs. They are also more efficient at monitoring the initial side effects and reactions.

So then, what is best for me? I am now aware of the chance that I may be given one drug over another based on its cost. What I’m not so sure of is how much attention is paid to the cost over the efficiency and then the thought of how toxic the drugs will be and the extent of their side effects. These factors I have to think about and not make any rash decisions.

Becoming HIV positive certainly is a lifestyle changing illness in its own right… starting meds then changes it again, so just when your mind and soul starts to cope with the news of the diagnosis, along comes the realisation of needing to start a toxic drug regime, re-surfacing all of those fears once more!

As I sit in the clinic waiting room, various thoughts run through my mind; today may be the day that I start antiretroviral medication. So what choices are available to me? Or maybe, how will my day change in relation to taking medication?

If I am to believe all that I read, I am apprehensive and fearful of what I am about to start taking and how it may change me. But it is combined with an excitement of knowing that hopefully, after only a few weeks of initial illness and discomfort, that everything else will improve; my health, my CD4 and in time, an undetectable viral load. Therefore, I adjust my mindset and accept that some side effects are worth enduring for a short period of time if, in the longer term, I will be able to manage better and be more well, day to day.

To be continued…

One Final Thought…”If A Smile Lights Up Your Day Then Pass It On”

Before March 2007, I was your ‘run of the mill’ normal kind of guy. I say normal in a loose sense of the word as I am by no means normal in what I do. I tend to do things in my own typical style.   I never took anything for granted… I always looked on everything I had, or was given, to be more of a privilege rather than a right.

Then it all changed: I became extremely ill and I had a rash develop all over my body, my face and even on the palms of my hands and the souls of my feet.  My partner called a friend of ours who was a nurse from South Africa and was visiting in the UK at the time. On arrival, she looked me up and down and carried out the usual checks and then said to my partner: “Call an ambulance! We need to get him to A&E.”

Initially, no one quite knew what to diagnose and I went through the usual routine visual checks, E.C.G.  and blood tests and fairly quickly, I was admitted to hospital in isolation. I am not sure if that was for my own protection or for the hospital’s sake. Either way, I got my own comfy room or at least, at the time, I felt looked after.  I think I must have fallen asleep because I do not remember much more after that.

The next day I felt like a human dartboard. The hospital staff were still doing their checks and several attempts of a further cannula being put into me.  I then had an unexpected visit from two members of staff from the G.U.M. clinic, Kevin and Yvonne.  I was told that they had been contacted by A&E to come over and do some further tests as it was thought that I may have second stage Syphilis which apparently has similar symptoms to that of what I was displaying.

It was a few days before I had any kind of results and both the hospital and G.U.M. clinic staff seem to be working both at separate ends of the scale and neither of them seemed to be talking to one other. Slowly, I was feeling that isolation was not such a good thing as, at times, I felt not only isolated in my little room but also with what was going on. Moreover, what I was not being told, why did I have the feeling that I was the last person to be told everything?

Staff came and went and more often or not, I was just being given plenty of fluids through the drip and it was not until a few days later when I finally got to see the light of day and was told what I had.

I remember it clearly when Kevin and Yvonne walked in. Yvonne sat at the end of my bed and began by saying: “you will be pleased to know that it is not second stage Syphilis.” She paused and then went on to say: “but it is HIV.” Out of sheer shock, I immediately burst into tears, not from fear but from the emotional strains that I had been under; the not knowing if I was coming or going.

I feel quite emotional now, as I am writing this! Thinking about it all, it still feels quite fresh in my mind but it is also my therapy for coming to terms with my HIV status.

I thought that getting how I felt out in the open or, at least, stringing together how I felt, in a fashionable sentence, might work on making myself feel a bit better. It does in a way! It certainly makes me feel stronger in coming to terms with being positive but it also makes me realize that everything is not as it seems; after all, I was not giving a manual about being HIV positive; neither was I told how I was going to feel and I certainly was not prepared for the total mind games that I was going to face every day.

All I had was a constant reminder of what a fool I had been and the trust I had with someone. I certainly had to find out for myself how my life was going to continue. It is almost seemed as though I was given a second chance and the feeling of a blank canvas to work with again, the choice of just how much of my old-self I wanted to continue with and how much of the new I wanted to include.  My emotional and mental state played absolute havoc with me and everything I seemed to do in those early stages, always felt as if it was contradicting me all of the time and it is at this stage I noticed, that I could feel so differently, negatively and think ‘what the hell,’ it cannot get any worse so I am just gonna party every night, get drunk at the weekends and carry on taking risks that at the time do not seem risky at all. Even safe sex seemed unimportant at the time.

A few years later, once I had finally come back down to earth, I was able to start to prioritise what it is that is important in my life and get a truer perspective as to where and what things were to fit into place.  Unlike before, I now let fewer people control my decision making, e.g. getting on a plane and I feel that the second chance that I have been given, even with this debilitating illness; is going to work in my favour.  I have many more goals to achieve and ambitions to fulfil, and I am meeting new friends and discovering new places.  Since being diagnosed, my negative situations are turning into positive ones.

I would very much appreciate that my message and my blog posts here that are my experiences… act as a wake up call to those people who read this and who are not infected with HIV, to realise that there is still time to not make foolish errors and to be responsible for your own actions.

I am learning that life experiences can be a good means of communicating a very positive and influential message.  I have observed some people becoming HIV positive deliberately. In one example, it was in order to be the same status as their HIV positive partner. For him, it was the right decision at the time… but they are separated now!

I have found out that, at times, HIV can be quite prejudice towards you, so choice is everything but today we have more choices than ever.

In my next blog, I will describe what living with HIV is like, the pitfalls, hurdles, the highs and the lows.

Look out for each other, look after yourself!

‘Til next time,

Max