Saturday, 25 November 2017

WAD - World AIDS Day 2017

It will be WAD – World AIDs Day – 2017 soon.
Most issues have a week- we only have a day.

1st December!!

I feel I have to say something, if not for anyone else but for myself.

When I was diagnosed with HIV and indeed my husband before me, little did I know I would enter a world that before then I did not know existed. A world that few do, unless they live with HIV or are directly affected because a partner, friend, family or a loved one does.

I stupidly thought I did know.

As I lost a friend to AIDS in 1984, who was a long time before that and before he came out, was in fact a once lover of mine. He died before the wonderful meds that keep us now alive existed.

And then I qualified as a youth worker with a specialisation in sexual health.
Probably due to his death and how it happened affecting me hugely, so when I had the choice in my work as a youth worker, I always worked with HIV issues.
I was involved in running HIV awareness youth workshops in the 90s. I worked to do this with those then living with HIV. I still have the paperwork and the handouts – so little we knew then and then there was no effective medication.
I also helped organise and run HIV awareness events at the then City hall in Truro, Cornwall in about 1993.

But I did not get it, even so.
But my mistake was in thinking, when I was diagnosed that all had changed now. The awareness attempts I  had been involved in, In terms of stigma, and awareness had worked, more than it had.

And in terms of those that live with HIV dying before their time, in terms of suffering, hardship and the daily challenges of those that do was a thing of the past.

I thought by the time I was diagnosed it was a different ball game. That the meds totally worked, for all,  that stigma had gone, that it would be OK for me to be open – I could not feel I could do anything else but be open anyway due to my friend who was and died in the 80s, but I thought it would be a very different and OK thing for me to be so.

I was wrong.
It is different, but it has not moved on as I assumed it had.

On the very good side I have met, either online or indeed in person, with such wonderful people that my life would not have otherwise caused me to meet. And all over the world, mostly online but some in person.

I was introduced to a huge world I never knew existed and at a time that yes, in my then early 50s, I was beginning to get entrenched and less flexible in my views.
Well for me HIV changed that.
I do not find it possible to be fixed in my views, nor blind to others experiences when living with HIV.

It confronts you with different issues, different people, different realities every single day. Well maybe not all, but it does me.

In more recent years, 6 /7 I have been blessed with interacting with so many people from counties in Africa who live with HIV. Mostly South Africa, but also Zimbabwe, Kenya, Nigeria, Mozambique and more.
I did not target any country or origin. Just those also living with HIV, like me and my husband. But many I met were from other countries than myself.
All over the world!! Probably, almost, every country in the world I now know someone living with HIV.

But two of the groups I am an admin in were joined by mostly those in African countries.
I do not think I will ever be blessed to go there. But I think I understand at least some of the issues they face, and they have given me so much.
I have also ‘met’ so many from all around the world.
And it is a funny thing but in the social media world, we know each other well despite never meeting or likely to.

But I have also lost so many.

Some actually due to AIDS, despite the current medications,  and some in the last few months. There has been a lot of deaths recently in the HIV online community. I do not know why.
But maybe in some cases because those that have been battling for so many years are now aging, and despite what many think , even with the current wonderful medications HIV takes a toil on your health others who are not living with it do not have?

Many were diagnosed before these medications existed and others were diagnosed late. Others did and still do not!! not have access to such medications, others they no longer work for, others refused to take them.

A few I knew even here in Cornwall. One lost her battle just 2 years ago who would not take them and another who the meds no longer worked, others that got co-morbidities, caused by the meds or HIV directly,. Those with HIV get cancer and cardiovascular, kidney and liver issues plus HBP, Diabetes, bone issues far more than those without. Plus many others online.

Two I knew,online, died in the last month.
One I know now is battling right now and I am told will probably not make it.

A very long term survivor. Diagnosed initially with GRID - Gay-related immune deficiency - as they did not know then about HIV and that this was causing it and the majority, if not all, known then, were gay.

It must have been very hard to be diagnosed, when heterosexual and male, at a time it was seen as a gay only condition in America, when he is heterosexual and at the time married. This, he said, caused him a lot of problems with stigma, wrong assumptions about how he got it, even treatment. And sadly his wife did not make it, she died of AIDS, at a time most did not accept women got HIV.

He can be very 'difficult' to know, well for me. And he blocked me many times.
I never said an unkind thing to him, not ever.
But he is so very sensitive, lives in a very different world from me and I can be blunt.

But I am very fond of him.
And very sad another warrior is struggling.

 I guess my point or writing this at all is HIV has not gone, nor sadly has death via AIDS or due to complications of living with HIV and some so very young.
I am in my 60s I am very lucky to still be relatively OK and I so know this.

And that sadly  new diagnoses are still happening and to live with it is pretty dire, wherever you are in the world it is not good, but in some places it is very bad.

I have good medication from the NHS. No social support I only find this online but my medical care is good.
But I am lucky, as I live here in the UK. I talk to those every day that are still on medication that I was on myself up to 9 years ago that if I was still on it I would either be out of my mind or physically in a very bad way. I have bone problems due to it and kidney problems and it sent me totally loopy.

All now recognised side effects including the fact it crosses your blood/brain barrier and causes mental health problems. Some it causes psychosis. I was affected and near to this. But when it got really bad I had the option to change meds as other ARV medications had come online within the NHS by then. Also I changed to another med when my kidneys started to be damaged - too late for my bones but at least my kidneys and mind is relatively OK!!

But many in many parts of the world do not

All too many in the world I talk to have no choice but to take this and other older  medication.
It is all that is offered under their countries HIV schemes. Often funded by aid and only generic versions – which is a different issue again
But like I had to when that was all that was offered, they have to take it.
As anything is better than the alternative.

An alternative I saw when my friend died in 1984 and when, not so long ago I watched my own husband nearly die of AIDS.

This is a draft.

Just my first thoughts. I may add to it.
But I wanted to start to get them down


Sunday, 1 January 2017

What do I have. Apart from HIV?

At 16 I was diagnosed to be a psychopath. Actually I was first called psychopathic at 12
Try having that as a diagnosis? At that age??

Despite the fact I have never knowingly or deliberately harmed another person physically or mentally, ever, but that is that is what I have as a diagnosis/label .

I think now it would be called a 'personality disorder'? Which does not carry the stigma psychopath does..3
But .......I had to live with this label most of my life.

And that they call it something else now, does not really help me much

Well I can agree I am a bit odd
But to live with this has been so dire.

And then to get HIV in my 50s really was the last straw for my sanity. But I am trying I am really trying.

But think how it is to live stigmatized your whole life??
I was put in an asylum - it was that then -  and later once admitted to a then so called 'theraputic community'

The Henderson. Did me a lot of good. Taught me how to live with what I have and make a good life

But I never appreciated the then head psychiatrist, when I was there for a year - Stuart Whitely and his colleagues who I also met.......~Writing  the book, about us, that he called  'DEALING WITH DEVIANTS'

Just because he could and got credit for his work.

Dogs, drugs, bands and Chocolate - and other New Year ramblings about my life

Panic over. While cleaning up today and moving and putting away, Christmas decos, sweets, pressies etc. without thinking, while tiding put a small bit left of a chocolate bar lower., that had been safely, with all the chocolate, up high, out of animals reach,

None of our dogs like or will go near chocolate. But we have a guest dog that does, is mad for it!

Maybe its like an addiction for them? Something like alchohol, or speed, tobacco you may find distasteful to smell and even taste a tiny bit until by accident or because someone fed it to you it, ( or you thought it was cool LOL!!) you get addicted!!?

Certainly worked this way with me..

Well not speed, weed, coke, etc. Well it did all of this and more, as but only because it was 'cool'  I did it because it was 'cool' and weed makes me very sick!! So sick I have no idea why I did it more than once?? Even now it makes me sick.  Speed though once I got over the distaste of shoving it down my throat or snorting it, I really so liked it, for a while.

But while tried it all at 13 onward, I have long, since my mid 20s, knocked this on the head, thankfully . But I can rationalise and a dog cannot LOL!

Wish I could now over my later, and sadly legal, addictions

I totally once hated the smell of tobacco. And growing up in the 50s, everyone smoked. We were brought up on cigarette smoke!
My dad was a chain smoker so I hated it. Even our walls and ceilings were yellow with it and my mum did not smoke and did her nut trying to clean the place and keep it nice and smelling nice. As she was partially sighted, this was very hard on her.

So while then on  social occasions then hold a cig in my hand to look cool or take a drag of someone else's - it truly was cool then, believe it or not - it was only for effect on my part.

I did not actually smoke until my early 30s. But at first only socially. To be fair I could not have called myself a smoker at all until I met Barry who is, like my father was, also a chain smoker and is to this day.

I do not see us as joined at the hip. I do not think I am at all. I have spent most of our married life apart from him anyway as she was a seaman. It was only when he retired, when he got HIV, when they basically chucked him out, that he has been home all the time.

But I guess having the odd drag of his, more and more frequently, just to 'join in'?? finally got past my distaste and to the addiction stage????
I so wish I could stop it now, and he. It will kill us both. Worse think you can do if you live with HIV is to smoke tobacco.

I also hated alcohol as a kid. My dad was also an alcoholic. I am not just saying this but he was, but was a functioning alcoholic. This can be harder for all concerned in some ways - as functioning alcoholics rarely seek help until they stop functioning???

He never did, when he died at 80 he had two business on the go and still drinking!!!. And did not die from anything alchohol or smoking related!

But not saying when very young and stupid I did not give both a go.

Which led to some very amusing situations where my very drunk father - he was drunk every night - drove out to Newbury or Basingstoke ( we then lived in Kingsclere which was half way between both and I went out to both to see bands etc)  out to get his - sometimes, but not indeed always by far as it was not really my thing - drunk daughter from 13 years old onward, while totally off his tree himself!!

About 9 miles to Basingstoke , 8 to Newbury. Thankfully a straight road. And in those days, little traffic after 9pm.

The funnest one I remember, and I was sober and had not had anything at all that night. Was when he picked me up from Newbury Plaza, The Cream I thank I had gone to see?
YEP - Found it!! it was the Cream  14th April 1967

And I was about 14 and was there.

And when my dad arrived after, he was when he arrived, paralytic!!
I doubt he could even see!!!!

On the way back he somehow strayed off what was a very straight road from Newbury, through Kingsclere on to Basingstoke.
How anyone could stray from that road I do not know. But he did?

And in the side lane he had got into he drove into a ditch, , front wheels first.
But by chance it was just outside the farmers house? I went and knocked - my dad was slumped at the wheel and unconscious by then. I was not alarmed, it was not unusual -  and the farmer came out................almost as drunk as my dad!!!

 He sympathized with my father. Woke him up, got his tractor out and pulled our car out of the ditch.
Shared another whisky with him and somehow my dad drove me home!!

But you have to understand he was doing his best for me. There were no taxis then at night. He could not see his daughter just hang around until the first bus back - well I had and did in the summer, but he did not feel he could let me do so in the winter, this was April and very cold.

The buses any way in those days was only about once there and once back at day , at most twice each way. Which as the gigs were a Saturday, the next day would be a Sunday and there were no buses on Sunday on that route. And he could not stop me going out.
I was unstoppable in my bid to have a life and see the music I loved.

Unusually I went alone. I did not expect any other young women, certainly not any of the guys as they were so straight, I knew in my village to do what I did and they did not.

Very ironic to me now. As now I ain't even got the courage to go down my local pub on my own!!!!!!!!

If I could avoid him picking me up I would. I took the bus there then often hitched in the summer months, but that was not viable in the winter so would have to find a lift or call my dad. No mobile phones, I found the nearest phonebox. We were very lucky then as my dad had a business so we were lucky to have a phone in our home.Most then did not.

I would often get a lift from an older person back to Kingsclere, 
from Basingstoke or from Newbury, who was at the gig. I was very good at finding lifts.
Some, many,  I had to have sex with in return. But hey top me then, a lift is a lift.

Especially if it avoid being picked up by a very drunk dad or spending a night on the streets in the cold!!

 I once got a lift 8 miles home from Newbury on the back of a mods scooter. Poor guy, he lived in Newbury, took me all the way back to Kingsclear, for just one kiss!!!

But I found I did not like booze as we called it at all and my dads behavior put me right off it, so my experimentation with it was very early 13 to 15

But by my 20s I would drink on social occasions as did not want to seem like I was the party pooper but never more than one!! I really did not like it at all!

Barry when I met him was a real drinker. When I first met him he used to laugh at me as I would make one beer last a whole evening.

Still was a bit like this all our married life until he found out he had got HIV, because basically he had had sex when drunk and it is the drink he sees as to blame - not so sure.. However . Since then he has knocked it on the head

I am not saying I was squeaking clean, just that alcohol at that time was not my thing.

As I did start to appreciate a nice wine and once drunk all Barrys supply of wine when he left me on my own for our first Christmas and New Year together, in Ashton when I knew not a soul.

But it was not regular, by the time I was about 37 I would drink a bit of wine, but then I got pregnant and had a baby after that so did not bother. But one day I found, at around 45, why people drink it!!

Had my first hangover ever after my husbands 50th, 15 years ago!!!

And when I was at a very low ebb and then I found when I had my accident at 50, how while it does not kill pain it sure makes you forget it!! And the loneliness.
I have been addicted to alcohol ever since.

And I started to drink at the exact same to my daughter Caja, from a similar age from me,  also started doing the same as me at age 13 to about 17 when she moved away and got her car license .

As at about 13/14 She also started to go out from this small village to see bands/parties/whatever etc and call me to pick her up, sometimes in the early hours, when I was as by then a drinker . And I was at times drunk. Drunk when picking her up late at night, when drunk, just as my dad had done to me!!!!!! And a drunk in all other ways. Just as my father also was.

And she has never forgiven me.

It was not my fathers drinking that damaged me, not even stuff like nearly killing me several times because he drove me home drunk. I can forgive this and indeed at the time it did not matter. As I knew he picked me up because he cared.
It was the nasty things he said to me while drunk, that did the damage.

And sadly it is the same for my daughter about me!!

What goes around does come around, my mum used to say

Anyway back to the dog

As years ago had a rescue lurcher that was the same about chocolate. She would go mad for it so Christmas was a nightmare keeping it out of her way.

Yet our current dogs even find the smell distasteful. One once licked some left for a second, hoping it was tasty, but recoiled from it and she will eat anything!!

This guest dog is a rescue too and came to its human already with a chocolate addiction. It has sadly done it before at Christmas with its human family here and a few other times. Ate a whole chocolate cake once. Not its humans fault. Someone else left it within reach.

But due to having this guest dog, that we have often, so we know. We have been careful to keep all chocolate, even biscuits, up out of reach or in tins with with lids safely on and also up high - not that easy if you have a guest/guests that do not have dogs so do not understand. This is essential as this dog is tall enough to reach any work surface.

I forgot for just a minute and the dog ate the chocolate.

I did a check, body weight, amount eaten and it will be OK. There is little or no risk from the amount our guest dog ate.
If you want to check too, you can here.

Pity we cannot check at the time about the chances of damaging our children!!