Monday, 17 November 2008

HIV is very boring

Some people have asked me why I do not keep up this blog much theses days
Well the reality is that living with HIV is just so very boring!!

I don't mean I want to live my life in a state of anxiety and trauma whereby HIV is uppermost on my mind and I am constantly distressed about it

No .............what I mean is that now we have got used to the fact we are living with HIV, there is often nothing to write about as our HIV is just a fact of our life.

But it also carries for me has its own unique sense of boredom because in the past I have always been a believer that life always changes and that you never know what is going to happen and what your future will bring. And I have always been happy and excited to face whatever life has in store for me.

But the one thing in my life that will never change now and will always be constant, is living with HIV - and the prospect of that bores me stiff.

I do not know if anyone will understand what I mean by this or why it is this way for me, but it just is.

I had an idea that this is how I would feel once I got used to he fact of living with HIV, so this is one reason I have tried to get involved with the HIV issue as an activist and have joined groups, a charity and started a woman's group.

But it is hard to be an activist on your own, never meeting anyone else who feels the same face to face - and so rairly meeting anyone else with the remotest interest in HIV from any point of view!!

I had hoped that I could use my new status and knowledge about HIV to raise awareness and inform and threw myself into distributing the PozFem stuff and contacting those I new from my youth work days and offered my services everywhere I could think of as a public speaker on HIV.

But no one is remotely interested!!!

That is something I have learned - that unless you have HIV most have little or any interest in it, and those of us who do have it get bored with it being a constant in our lives.

And very few are at all interested in finding out .

I guess like I felt before HIV ...

Everyone thinks that HIV will NEVER affect them personally, it will never be directly a part of their lives. Some are sorry that others suffer it but it is of no real interest to them!

I have tried to get some enthusiasm to do something for World AIDs Day or to join in with someone who is doing something down here for Worlds AIDs Day

But have found no enthusiasm to do anything and the only thing that I know that has been organised in this part of Cornwall is a party run by

Healthy Gay Cornwall - a health promotion initiative

Saturday, November 29, 2008
8:00pm - 11:55pm
Bar Q-Dos, Truro

This is great - that someone is doing something. And I am going to go if I can - But I am not gay or even male but I will go to support.

their statement on the facebook page says: HIV still disproportionately affects gay and bisexual men in the UK. It is estimated that across the UK, around 1 in 20 of gay/bisexual men are now HIV positive - a third of those don't even know they are infected.

And I am not even male !! I am a lo older that most will be and theses days i can' cope with crowds or crowded nightclubs - So how am I going to feel if I go? Will I stick out like a sore thumb? Probably!

I am not sure anyway I agree with the statement. It is probably true that there are more gay and bisexual men in the UK that are HIV positive than other groups ( but not totally sure about this now) and that like the rest of the population a third do not know they are infected - but I thought this applied to the whole population of the UK and not just gay and bi men!!- well know it does -

Also I thought that HIV new diagnosis/infection rates had stabilized or even dropped among gay men and he fastest rising group of new infections of HIV are women in the UK??

I am sure that this is right?
( if anyone knows what the statistics are let me know ?)

Anyway what i really want is a job in HIV in some way - but as far as I can see their is no chance down here in Cornwall unless I moved it would be impossible!

If anyone knows of any jobs in HIV or related work in Cornwall let me know!! I need something to keep me interested and motivated.

Monday, 3 November 2008

HIV meds or Not???

I was interested to read an article in this months Positive Nation Magazine about weather to take HIV antiretrovirals or to rely on 'Natropathic' treatments

  • You can down load a copy of this magazine here: or ask for a physical copy - every one who is HIV Poz can get a copy sent in the post every month.

I was interested because although I went on the meds and did not at the time dispute that I should, I have been in contact recently with several who do not take meds and do not want them despite for some, their CD4 levels going down below the level where it is recommended you start

And indeed some who have found that on 'Natropathic' treatments their CD4 levels have risen to a manageable level - but their virus load has not dropped as this seems only to happen with HIV antiretro's?

I think it is important for everyone with HIV to make their own decisions about meds and of course I do believe that your state of mind is so very important for your immune system so if you are not happy to go on meds you may not take them religiously as they have to be taken and also may be further stressed at the thought of havign to take them?

I have to say that I went on meds as by the time I was diagnosed my CD4s were already under the level that I should start.

And while I did not find it easy at first as I was scared of them - to be honest taking the meds I am on at the moment are now no problem at all ( mild digestive problems at times that means I sometimes need to be near a loo)but really nothing so bad I can not cope with easily - and I feel 100% better on them - I feel I have got my life back!!

I knew I was not well before I went on them but I did not realize how low I had become until I started he meds and started to feel so much better

And I know that this is not due to any placebo effect - I have faced many mental/emotional challenges in my life and am very self aware and I know that I feel better on the meds because I am better.

But who is to say alternative therapies do not work?

I have met some who are on them and are still alive and relatively well many years after HIV diagnosis who believe they do.

I am interested to know what others think?