I was recently asked to give a presentation for the launch of a new HIV drug as part of the Five Nations Conference in London. My presentation was all about my own personal story as someone living with HIV and in particular adherence and my relationship with the medication.
I used some of my paintings as slides. This was my commentary in regard to the painting above – The Positive Pantomime.
Another aspect of our relationship with drugs is their names. We find them very difficult to remember - or even pronounce. Ask any positive person what combination they’re on and they will probably reply – "Oh, a pink one, an orange one and a blue one."
And some of the names - for instance, Kivexa and Kaletra sound like posh girl’s names – Kivexa go to your room. Kaletra I’ve told you we can’t afford another pony.
In my support group, Thrivine, we came up with the idea for a positive pantomime, where all the characters would be named after the drugs. There would be Prince Ritonovir, the dashing Maravoric and Atazanavir and Abacavir the ugly sisters. We’ve yet to stage it, but if we do, I’d like to play the Good Fairy. Abracadabravir - I would cure everyone with a wave of my magic wand.
I also spoke about my dog Lady Doodles of course, who as you know regularly writes my blogs for me and who played the starring role in the final video.
This is how I brought my presentation to a close.
The greatest day in this whole journey for me was when my consultant shook my hand and told me that the HIV virus was now undetectable.
“Would you repeat that?” I asked him, afraid that I’d misheard.
Undetectable, such a lovely word. I went around all day singing to myself – Undetectable, that’s what you are…… undetectable ….. da da da da
To end here’s a small film to commemorate some of the many things I’ve been able to achieve thanks to modern day medication and because of the great help, support and commitment I’ve received along the way.
From the bottom of my H A A R T - Thank you
World AIDS Day 2014
To everyone around the world - for every red dot on my stat globe - we have reached over 11 million.
For those who are positive - and for those who are not - keep standing by us - let's defeat the stigma together.
And for those we have lost - honour their memory and never forget them.
How do things get tangled up in knots? Wires, hair – life even. Just when you think you have sorted everything out, got everything straight, somehow things manage to get all tangled up again. Well, at least my ‘things’ do.
My life, I fear, is a bit like my pan cupboard. Every now and then I am forced to get down on my knees (not a task I undertake lightly these days because I then have to get up!) and rearrange all the pans and their pesky lids back into neat orderly rows. But in a relatively short space of time, or so it seems, they have somehow jumbled themselves up, fallen out of rank and when I open the cupboard door they all come crashing out and land on the floor making one hell of a racket. Is that what they mean by pandemonium? Maybe it’s like Toy Story or a Night at the Museum and by night they all come to life and have a pan party, a shake rattle and roll – a get out of that kitchen and rattle those pots and pans.
It’s a strange analogy really I suppose to liken one’s life to a pan cupboard – or maybe I should say a strange panalogy! Then there’s my trichology of course, which is not something Dynamo the magician practices but the study of the hair and scalp. My hair is so thin and fine these days thanks to a combination of age and the meds it ties itself up into unravelable knots that are impossible to untangle - like the wires behind my telly.
Added to which everything in my household seems to be wearing out and breaking down, at the same time – including me! This is partly because my son is back in residence which causes a certain pandemonium of its own and is a bit like living with a human hurricane. Rugs upturned; paintings skew whiff, scrunched up towels everywhere, cupboard doors left open.
On his first day back he managed to break his bedroom window which will now no longer shut and needs replacing at a cost of 200 pounds no less, then broke the hammer trying to fix it himself. How can you break a bloody hammer? This coincided with the horrendous gales we experienced recently causing gusts of cold wind to howl down the stairs and throughout the house.
In order to escape him for a while, I decided to run a nice relaxing bath, only to find the hot water system is now as confused as I am of late and can no longer find its way upstairs to the hot water tap. Well, it does sometimes then suddenly reverts to freezing cold. I had to sit on guard with my hand twiddling the temperamental tap for half an hour just to get a semi luke warm bath (of sorts).
It was so peaceful living on my own with just Lady Doodles for company, but our peace, like the aforementioned window, has been totally shattered. And now everything else seems to be following suit and giving up the ghost so to speak – especially me. And in regard to speaking /arguing with my son, it looks like we will forever be getting our wires crossed!!
A bad hair day indeed - or seeing as he’s my only son and heir - a bad heir day!
Spaghairtti! Playing unicorns!
It’s all change – autumn is upon us, the leaves are slowly changing colour and already starting to fall.
Hey! Hang on Autumn I’m not ready. I can’t be doing with change it unsettles me, although sometimes it’s good to change things, especially if you’re feeling a bit down.
Take knobs for example. Are you tired of handling the same old weary looking knobs day after day - talking kitchen cupboards here before you get the wrong idea!
Well, try painting them all a different colour why don’t you, like I did. It’s amazing the difference it can make to your mundane day to day tasks. Every time you go to open a cupboard door or drawer you will encounter a different knob. But beware when opening your front or back door in case you confront an undesirable knob such as a door to door salesman or worse a canvasser for UKIP in which case you can just tell them to knob off.
They do say, don't they, that change is as good as a rest, albeit not always politically speaking. You can also have a change of heart, start with a clean sheet and thankfully change your mind, especially if you are thinking of voting for UKIP and that knob of knobs Nigel Farage who is inciting HIV stigma once again with his knobbish comments. Between his recent uninformed statements on HIV and the current terror about Ebola we pozzers find ourselves once again in the firing line and open to insults and attacks of stigma. If someone insults you I suggest you retaliate by quoting the old English expression - and the same to you with (brass) knobs on.
That’s enough about knobs for one day, but a last comment on the saying, a change is as good as a rest. I chanced upon this ancient ode, author unknown, back in the good old days when poetry rhymed and Nigel Farage wasn’t even a glint in his father’s eye.
Hampshire Advertiser 1857 – no author given.
Ye votaries of sofas and beds, ye sloths who exertion detest, this maxim I wish to drive into your heads, a change is as good as a rest.
Ye children of fashion and wealth, with countless indulgences blest, remember that indolence preyeth on health – a change is as good as a rest.
I’ve added a verse of my own.
Ye votaries of Nigel Faragye, ye sloths who people with HIV thy detest, this maxim I wish to drive into your heads, don’t vote for UKIP if you know what’s best!
Another blast from the past - lovely song by Lesley Duncan "Everything Changes."
You’ve heard of the thirty nine steps, as in the famous novel and the film by Alfred Hitchcock, well I’m talking about the sixty five steps, albeit not in a hitchcocky kind of way. These muddy and often perilous steps are located in Sunnyhurst woods where we go dog walking and they are very very steep.
Yesterday was my sixty fifth birthday so naturally I felt duty bound to surmount the blessed things with the aid of my trusty walking pole and Lady Doodles of course watching me concernedly all the way up. I decided on each step to count my many blessings and also to make a wish.
It went something like this – first and foremost for my son to find happiness (and a job!!). I gave thanks for my sister and my friends and family and not forgetting Lady Doodles of course who was giving me an encouraging lick every time I lingered on a step to catch my breath and nearly knocking me back down with her boisterous concern.
I gave thanks for my HIV meds, wished for a cure for HIV and that I’d win enough money on the lottery to pay off all my debts. Then I ran out of wishes and I was only quarter of the way up. Well that was a surprise! I must be reasonably content with my lot I thought if I don’t have anything more to wish for.
I kept repeating them all again for good measure until I reached the top, uprooting the odd piece of Himalayan balsam on the way – pesky bloody stuff. It’s taking over our beautiful English countryside and Sunnyhurst woods is riddled with it to the point where the poor bluebells this spring were almost completely obliterated. Some of it is way over six foot tall and they’re the most satisfying ones to uproot. It’s called Balsam bashing.
I’ve been on a personal vendetta to get rid of at least as many as possible so they can’t come back next year, but it is an impossible task. In fact it reminds me of the HIV virus, slowly taking over, running amok and killing off everything in its path. Maybe that’s why I enjoy uprooting it so much and tossing it somewhere it can’t re-sprout, then crunching on its juicy fat stalks. Freeing the ferns! Bashing the balsam! It’s very therapeutic. Better than bubble wrap. You should try it sometime, but it’s a bit late now as autumn is upon us and everything is dying off – although thankfully not me as I have survived yet another year Himalayan balsam and HIV aside.
Luckily we have our meds to keep our ‘Himalayan balsam’ under control, at least here in the UK. Some other countries however are not as fortunate. Bugger it! I should have wished that all countries could have access to HIV medication. Oh no, I will have to go back and climb the sixty five steps all over again!!