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!!

Wednesday, 28 December 2016

I do not have Bi-Polar at all

I don't have Bi-Polar. But I do have another labeled mental health issue that I have been long diagnosed with. At 15 and I am now 63. My poor parents were once told I'd never live a 'normal' life?

I am so very glad they both lived long enough to find I could and so very much did

- trained as a teacher and then a youth worker and I know I was useful to so many

And so grateful they died before they knew I had HIV.

I can't cope with well, and so thankful they did not see me crumbing as I am now.

Well my mum did live a few years after my diagnosis but she was by then blind - She was partially sighted all her life but was blind by then and at the time of my diagnosis she had  has
Dementia , which I so fear too.

People with HIV, even with the now marvelous medications we have are  more likely to get
Dementia, and a lot of other things
And my mum her mum, her mum etc, etc, died of it

I value my brain above all else. But I may very well lose it

I have had many friends with Bi-Polar, and I have, over the years,  got on so well with those that do.

Once I even sadly had to call the mental health team/ambulance etc for a dear friend with it who was, sadly, having a very massive 'episode'. This was so very hard, I cannot explain how hard it was??

What a decision to have to make????
And then, from the very minute she was admitted, I fostered her child until she was well enough again to look after him again

- he is doing so well, been to uni, and a lovely person by all accounts. She is, as far as I know, good  now and settled with her partner. I am so thankful I could help.

But wish I saw her now. Or her son? If even just now and again.

She also helped me, and very big time, before this, and so very big time too.

When I had my accident and was so weak and ill - had an infection in my bones - and non weight baring anyway. I could not walk at all and my husband was at sea.

It was her that came to collect me from hospital and while I was in there as Barry was then at sea.
Actually I discharged myself. Another story of yet another abuse/lack of care by the NHS.

I was readmitted 3 days later with this infection and was critical on IV antibiotics for a few weeks, but thankfully not into St Micheal's ......where they had missed, how ill I was, despite me saying and saying!! I was suffering an infection

Yes I did. She saved my life by coming to get me that night. I would not be alive if it was not for her!!!!

And she had, in the meantime got all the things I needed at my home for when I returned to be able to survive once at home - aids like a wheelchair, perching stools, crutches, walking frame, toilet frame and seat, chair I could sit in etc, etc

And it did not end then.

She came up to see me daily. Every day for about 9 months, every day???!! I could not even walk then, nor often then get out of my bed. Pretty much no one else did I see. Excpept also Sandy - Sandy I cannot also thank you enough.

Even though up to the minute i fell off my horse and big time on that hill - and was airlifted to Treliske ( Royal  Cornwall Hospital) I thought I had loads of friends.

Well I thought so as they were here most days, eating my food,. drinking my tea and coffee, their kids riding my ponies, us sharing so much due to our kids being the same age??

But the day I fell off my horse that all ended

But this friend, no she carried on being a friend. She came to do the things others could not or would not do.
I did have a daughter but she was only 13 and at school, I tried not to put things on her, I so really tried. This friend, with Bi-polar, and struggling herself at the time. Came up to see me and fed my daughter almost every day.
I owe her a whole lot that I can never repay

And I also paid a carer, or rather a caring business, Penhellis -- changed hands now so that they were lacking no one can do a thing about now.

The actual people that did the caring  got shit all --- to come in twice a day to get me up, get me to the loo ( if I had to go between the times her and my friend were here I had to crawl ) and give me a cup of tea.
I paid them quite a lot of money to do this

But one was outstanding Rachael. She also in my view saved my life. She went above and beyond the pittance she was paid to do her best for me.

But others , sadly no long out of my life, as either dead or are just not in my life any more, did so much also.

I owe my life that I still have it to the very few friends that were there then and stuck with me then.
Roma, Gelly, Sandy, Ali, etc .........what can I say or do? I can never repay and not at all now as some have since died

But I hardly ate as no one cooked me anything, this friend did get me some meals however, for which I was and am very grateful. But there were a lot of days I never ate anything.

But the bonus was I lost weight LOL!!

But my friend came in every day and of course for nothing.

And I also owe a debt to my other friend at the time that then lived in my caravan. She rented it, so was a tenant Sandy.

Who saw to my cats and dogs. When my daughter, understandably,  could not

Sadly I had to get rid of my then 5 ponies, my goats..loved my goats, chickens etc ..... either it was this or I would have inflicted cruelty on them , and this could never be allowed to happen

Jaffa he went to a riding stable as no way could I part with him. But the others, so sadly, to Barry Rowe a local horse dealer ......... it broke my heart .......I still wonder where they are? I loved those horses. Two of them I bred

But all my other friends just faded away!!

As all/most except them that love you do when you are on hard times and cannot give them what they want from you.

Even more have faded away since my diagnosis of HIV. Sad isn't it!!

I am guessing that why I do get on with those who have this, and have had many friends with it, because some of our behaviors, especially this in the meme below, are similar, so we understand each other. But because I do not have the manic phase, I can be level headed when they have been high, so have helped to hold those I know with it together and to get them help when need and reminded them to take their medication - when you have Bi-polar, someone who is not perturbed by how you are and 'gets it' to 'remind' you to take your medication is in fact so very important.

And I am so very glad that Bi-Polar is now beginning to be understood and be less stigmatised.

But sad for me that my diagnosis isn't at all.

Monday, 6 June 2016

I do not think I am cut out for the 'hospitality ' thing' ??

I do not think I am cut out for the 'hospitality ' thing'??

A very good friend at the time, Gelly, said when I first decided to let out Yurts, camping and the Studio flat to visitors 'are you sure? I am not sure you have the temperament for this?'

She was totally right, I don't. But I have done OK during the last 8 years or so.
As we/I had no choice.

We had both been diagnosed HIV positive??

Barry had lost his job and directly due to this. We had no money, few savings and a too big house and land to maintain and animals that depended on us.

And we were too traumatised at that point to even consider selling up and moving.~So we sunk the little savings we had into it and despite my 'temperament' we made it work!!!!!

But I guess now I have stopped my main business, the Yurts, I now have less patience?

The visitors three weeks ago seemed fine.
Except when as when they booked, it was as a couple I had only made up the one King size bed?

But when they arrived they did not want to share the same bed?? And said they thought it was a two bed apartment, when all my advertising plainly says it's a one room Studio flat!!!!

Even though she kept referring to him as her 'boyfriend'. She was aghast that she may have to sleeping the same bed with him!!

She was from Brazil he works for london transport and they were 49 and 50 years old, so not either young or I thought , inexperienced??

Not sure he realised she would not share his bed??

But OK , I made up the sofa bed and very quickly. But just wish they had made it clear before they arrived?

From then on it all went pretty smoothly.
And they were interesting visitors as visitors go.

As her grandfather was fascinatingly born and lived in Helston near us in Cornwall and she had always wanted to come here to see where he came from?? That is such great history and I chatted to her about her memories of her Cornish grandfather, who of course was a miner who once in Brazil for work, married a Brazilian girl and stayed and it was very informing and interesting!!

But I have to admit, I was a little taken aback, when she out of the blue,!!!!!!!!!!!!!

................. suddenly pulled me out of sight of her ' boyfriend' grabbed me by both hands, said ' I have something very important to tell you'

starred into my eyes and said - Jesus loves you, you are saved??

And tried to continue, still clutching both my hands and staring into my eye, telling me all about Jesus!! And how she knew and for sure, he had forgiven my 'sins'?

I was a bit relieved as I thought she was going to tell me about her sex life or lack of it, or to complain about the size of the room!!!! or that it was not 2 bedrooms??

I had no choice but to disengage from her and to say - but very nicely - so not to offend as I respect all peoples beliefs and religions and their rights to have them.

'Sorry I am not a christian and never will be? But I thank you so much for your thoughts.'

I have since realised she had looked me up on the internet - we supply free WiFi- and realised, as my name is easily Googled and we are open about this .......that we have both have HIV, that we live with HIV, and she then must have thought I am particular need of saving??

Very ironic as my husband got HIV from a women he met when working in Brazil ??

And I have been faithful to him since 1984!! what crap assumptions people make about those that live with HIV??

Not all are as religious as her or their religion says no to sex outside marriage - but each to their own? and I got HIV from sex, but with my husband who I am, of course, in any religion, 'allowed' to have sex with, without it being a sin!!!!!!!!!!!!!!

Oh well!! But her obviously staunch Catholicism explains why she was not willing to share a bed even at 49 years old and single, with the man who had paid for her ticket to England and was paying for her trip to see her roots.
But not sure he got it before he got here??

But that was OK. Their business , not mine.

So she, and he, mostly her, were fairly interesting. All went well during their stay. Until they left on the Saturday and the next people arrived the same afternoon for the flat?

I had spend since they left cleaning etc and it was a bit more dirty then than for most and with two beds to wash as well?

But fine. That is my job!

But it was not at all 'fine' in my book when the new visitors ran out of gas on their very first evening!!!!! -

I guess the women from Brazil felt the cold???? And OK I get this. but she burnt any profit we may had made that week and then some!!!

We have no mains up here so gas bottles does the heating and hot water in the Studio.

I had had two full 47KG bottles or propane connected when Mrs Brazil and partner arrived. Costing about £70 each. I usually recon in one bottle even in the middle of winter for the Studio flat, at most a week. But somehow it seems they had used two bottles??

Must have had the heating up full blast all 7 days and a shower two if not three times a day for both of them?? Cleaning away their sin perhaps as I am pretty certain they ended up sharing the same bed??!!! Do not ask me how I know this, TMI, but I do and they did!!!

But OK, this was their concern and the gas, I guess, it was not the new visitors worry it was ours.

So we panicked as we had no more gas bottles of that size that the Studio flat requires to effectively run the gas boiler. They are too big to collect ourselves and none could be delivered here until the following Wednesday. So we put a smaller bottle we use for our own gas cooker on it, Barry had to carry it, further hurting his bad back, and crossed our fingers it would do.

It did, thankfully. But we could not cook ourselves for a while. As could not get gas bottles delivered until the next Wednesday and then it was Sunday. But that was not their problem

As a family of two adults and two boys, paying to stay, they at the very least expect to have hot water and heating.

They were very good about it.~ that it took a while to get them hitched back on with gas.
~but it seems were not that enamored with what else we are offering in the studio?

The said in the visitors book..................

We have a lovely view but the Studio is too small?

Well we make it clear it's really suitable for couples but if you do want to save money on your family holiday and squash a couple of kids in as well, then that's fine by us and we will even supply the bedding and make up the Sofa bed.

But we can't make the room bigger!!!

They added we need to turn the sofa bed around so you can sit and look a the view while watching TV, or get a new sofa bed!

Totally impossible, there is not the room!? That sofa bed is the only one we have found that fits and it will only fit in one position - but heigh ho!!!

They further added that need to get a screen for between the king size bed and the sofa bed??

Well you are paying the price for a one bed Studio. And cheap even for that??

So in my view if you want to have nooky without your kids seeing , then I suggest you book a two bed apartment and pay the price for that, or just wait till you get home??

They also added that we need to get the lane fixed, as to bumpy and too narrow - Oh I soooooooooooo wish!!!!

We'd love to get the lane fixed!!!

It does not do our cars any good either.
Does anyone think we want to live up a lane that is like this??? If we had a choice???

But it is a 'non adopted lane/bridal way.
and not directly ours or any ones responsibility

~Yet in fact up until this year my husband went up and down the lane, every single year, for over 30 years!!!! filling potholes with concrete and bags of DIY ash-felt hand.......for over 30 years!!

Occasionally others who use this lane have contributed something to keep it usable.

And in the many years until the last 10 years the farmer next door would occasionally get a load of ashfelt from a friend to fill the worse of the potholes and we would help him lay it.

But not in recent years and not ever our next door neighbors and not anyone as consistently as Barry for the last 30 years!!!!

But his back has now given out , finally. And he is just not capable of pushing wheelbarrows of concrete or whatever, up and down that lane!!

But we would always join in and contribute a fair share to get it solved.

But no one else who uses it seems to have any interest and some damage it far more than we ever have - i.e tractors, lorries and recently a JCB???!!!!!!!!!!!!! going up and down all the time, that really damages the lane etc.
When we have only ever driven cars up and down it??

But we cannot afford, not on our own, to put it right? To ash-felt, or whatever, it on our own, but we are here and always willing to contribute. If others would??

It seems no one else that uses it, has any interest whatsoever in paying anything to fix the lane??

This saga does not quite end there.

Those in the Studio until yesterday also did something that really got to me - they put toilet paper in the key hole in the door between us and filled up the gaps in the door with this and cushions and other stuff, between us and them?

To me this was a huge insult.??!
They could never hear any noise from us as we deliberately and carefully do not make any.

Hard to explain the situation - but

But the Studio we let was once our 'granny flat' for my mother in law.

It has its own en-suite bathroom, own heating, own front door. It is completely self contained from our house. But because it was built for our then over 80 year old MIL there was a connecting door built in between us to the house. For her then safety

But while we have not taken it out. As you never know when the Studio flat maybe needed for a one of us, a family member or a friend in need. In fact when I was in a wheelchair for 2 years or so I lived in there myself ........ with this door open between me and the rest of the house

But we have effectively since blocked it off, for all intents or purposes while we have strangers in there.

There is now a wardrobe over it on the Studio side.

Yes inside, when you open that cupboard, you can see the door, from that side. So I assume they thought we could hear or smell them and they us??

But on our side there is also another storage cupboard. Packed full of duvets, bedding towels and everything for letting the Studio and no noise or anything can get thought?

Least I did not think so?? We cannot hear or smell anything from anyone in the Studio and we are always very quiet.

I would love now and then to have a blast out from my stereo . Listen to music very loud and even now and then have friends around to do so with me.

But since we have let the flat, I have never dared and we creep around so as not to disturb anyone staying.

But what I am guessing happened this last week is...............

Barry sadly now has a very bad back. So unusually he was spending a lot of time on the sofa in the room just behind the Studio. He could not crawl upstairs, and he smokes, and a lot. especially when in pain. Then he smokes more.

OK we know he should not, for his health and it is not PC, But he does and it is his life and his ( and my) house??

But because we let out a small part of it to holiday visitors we have just have to suffer the huge embarrassment and the feeling that we are persons non grata, of our visitors stuffing toilet paper into the keyhole and around the door to keep out the smell, or noise, or whatever, from us???

And that is my point.

I am not suited to this 'hospitality ' lark. As it hurt me to be so non approved anyone.

Barry says 'stuff em ' and they know what we are offering and it is so very cheap ( when we go away anywhere we have never paid as little per night as our visitors do) and it is his business if he smokes or not etc.

But my feeling. If we let out any part of our house to is no longer our house?? Even though we struggled and for so many years to pay for it. As long as we have to let out even just part of it, it is not ours??
So wish we could afford not to do this at all anymore

But reality says ....we have no choice??

Not the end - to be continued

Saturday, 30 April 2016

Prince - His death, HIV and my thoughts

The media. many in the HIV community and many on social media are speculating about whether Prince had HIV and died of HIV complications ( i.e AIDS related HIV opportunistic infections.)

Many are asking why does this matter? It does not alter his achievements, who he was, what he meant to so many.

One blogger I know wrote this on the subject.

And I do very much agree with most of what this blogger said as of course it doesn't make any difference whether he had HIV or not in terms of who he was, what he achieved, his legacy etc.

But as someone who is also living with HIV, one aspect does concern me and feel it is legitimate to express it.

That if he, or anyone, did die if HIV related opportunistic infections, this was avoidable with modern medications. Which he certainly had access to.

Then, if he died of this cause the only explanation is he refused to take them and died because he was in denial.

Denial kills when you live with HIV .

Yes those living with HIV and on ARV medications, do die, everyone does,  and a few much earlier than they may have if they had not lived with HIV. As living with HIV, especially if like us you have had a low CD4 count at anytime. And  this and even the meds themselves can still cause or be partly responsible for early aging and cardiovascular, and other conditions such as bone loss and loss kidney function - both of which which I have - and other conditions that may cause premature death.

However those living with HIV and taking ARV medications, rarely, if ever if their meds are working for them, die of what used to be known as AIDS i.e HIV related syndrome of infections and conditions.

And if it is not pointed out that if this was the cause of his death, it was avoidable. I think/fear  that many who have no knowledge of HIV will assume that HIV is not the manageable condition it now is?

And I think this is stigmatising and sets ignorance about HIV back a few years.

As those that are not aware that if he just took the meds he'd still be alive, and heathy enough to still be performing and creating, they also won't realise that taking HIV meds renders most effectively un infectious.

Which is why of course mothers living with HIV now rarely pass it on to their children, why we can now have children and healthy children, and normal sexual and other relationships even with those that don't live with HIV .

Pointing out that if a very famous person only died of HIV complications ( once known as AIDs)  it can only be because he refused medication, is in my view a valid point to make, for many reasons.

And even though we do not know for sure he had HIV. As there is much speculation he did and it is daily mentioned in social media, I think it is legitimate and necessary to make clear that if he did, he would only have died due to HIV because he refused medication.

Tuesday, 29 December 2015

I am going to use this more whether you want to hear it or not - its my blog

In my last post  I was probably overreacting to a few people in a couple of Facebook groups I belong to saying the old turkey - HIV is no problem now you have the drugs!!!! - Said by those that do not understand the reality of living with HIV despite the wonderful drugs we have now.

We are, thankfully and surprisingly given our age and our very counts when diagnosed - in fact both of us currently reasonably healthy ourselves. And so very , very grateful that this is so

But some of this I put down to the very brilliant .....and free to us here ........ health care we in the UK have under the NHS, but it still takes its toll in so many other ways and for me especially in terms of my always fragile mental health and my lifelong fear of non - acceptance.

In terms of HIV. I  lost a good friend in 1984 - lest it never be forgotten that without the drugs HIV does mean death, as it sadly did for him, my very good friend
And it is not to be forgotten that many in the world still do not have access to, or cannot utilize these drugs for so many reasons, social, political, personal........................................

But even since the my own diagnosis only 9 years ago, and being lucky and having the incredible NHS where my treatment and drugs are free............

I have still lost 3 people I knew face to face and locally since I have had HIV from HIV as a secondary cause of death and one the main cause of death, and many, many, others I have learned to know, like and love online.

Most were not open about their status but one who died was. A totally lovely man Bruce Ellsworth, who was open and an inspiration to us all, was my age and a lovely person who helped me and so many others ......but there have been , and sadly, so many more.

Both Barry and I are relativity OK.
Unbelievably amazing to us that this is so.
We are blessed by something, no idea what but we are.

But we do have health issues due to the drugs. Me more than him.

As he seems to be OK so far, well since he got over AIDS. While he has cancer -  prostate -  but this is unrelated to HIV. He is in remission now and for that and it is the luck of the draw he got that, and genetics sadly. But so far it is OK and now in remission.
I have osteoporosis, AVN, daily side effects and we now both have a degree of kidney failure, which will progress if nothing is done, due to a drug we are taking Tenofovir . Which is the backbone of the ARV combinations both of us are taking.
Which is well known to cause in some, bone loss and kidney failure.

Only in some but for those it does and it is significant and has been significant for me due to AVN ( Kienbock's disease, can't use either of my hands well now due to AVN and due to significant osteoporosis I have other problems (OK at my age I may have got this anyway, but statistics show that Tenofovir can and does cause this and kidney failure especially in those older and who had very low T cell - CD4 counts- at one time)

It has to be remembered that people aging with HIV is at present a very new thing. 

It is only now that many who have had it or been diagnosed for years are reaching their mid 50s and very few are like us 60s or older.
We are not unusual having only been diagnosed in our 50s but many have known for far longer and I wish I had.

We have probably had it for many years before and had no idea , as many do not -

 get fringing tested all of you!!! Do not just assume as we did,  that HIV never would and never did touch our lives - get tested. ..... pretty please !! Believe  me it is far better to know if it does sooner rather than later.

To know makes a whole difference to your prospect of life.

However remote you feel it is, if you get tested and  you are clear, as the majority will be. Then it can only be a positive thing to have done for yourself and it may have been an interesting or learning situation for you at the very least. If you have HIV you wil get the treatment and on time to save your life - testing is now only ever a good thing.

All who read this, for me, just have a HIV test and one every single year from now on - please, for me!!
But we are doing well so far.
That being said I do know two women personally in their 70s that are doing reasonably OK but I can't name as they are not open and I know so many more online - I do not know if it is significant that those I do know living with HIV and stil alive late 60s to 70s are all women now???

But what aging with HIV, even with the drugs entails is currently pretty much an unknown quantity??? It is something that has not until now happened before. we ar part of going into new ground.

But we are two of the lucky ones.
Because we live in the UK and are among the oldest at our treatment clinic - not by any means the oldest but among -

And we are still relatively healthy, and our current health problems ( except that is due to my accident which is fine as I have long adjusted to this) are most of them entirely caused by the ARV drugs they are pulling out the stops and trying to get us both on a new form of Tenofovir that does not cause bone loss of kidney failure to the degree the one we are on now does.

So looking forward to that. I have much to do in life and in some ways it is rosier than it has been for some years.

I get my full state pension on the 6th Jan. - one of the lucky ones for a woman as paid over 40 years of stamps and just scraped in to get an earnings related pension. If I had been born two months later I would not have.

So the first time in many years my survival financially .....such a relief ............does not rest only on what work I can do to scrape a few pennies, which to do so relied on me being here, and the same for Barry.

I now so want to travel, not big time but just ordinary travel . Until I went to Morocco in Oct I had not been away from this house for more than 30 years for more than 3 nights with Barry , 7 on my own to visit my sister once!!

Now I finally can ( and with Barry not alone) and for the first time in 30 years maybe can as I can just about to pay for animal care if we both go away, so I have pre booked a couple of holidays.

One to visit a friend who now lives in Greece on Zakinthos who every since she went there I have so wanted to visit....but no way could, until I got my pension - a bit of financial security and the means to pay for care of my animals I before lacked.

And I have booked to go to Naples in May, only to see Pompeii and Herculaneum. Which has been on my bucket list for over 40 years but somehow never got the chance.

So things are fine for us long as we keep healthy enough to do what we plan.

But the trouble with
Its a smoking gun and in fact you never can know. Never, ever for sure.

We know are so lucky. We have the the totally amazing NHS and the drugs so far work for us and those that are causing us problems we know our health professionals are currently gunning for us.

Sadly not all and especially not in the UK, are so lucky, as us

Sunday, 27 December 2015

I never write on here now

A picture of us with our dogs at Praa Sands, Cornwall

I never write on here now. As really does anyone but but us care??

I do not think so at all

So now I use facebook mostly now. And twitter. Jut for me as I am well aware that non one gives one iota about us or our story/
Why should then. HIV dues not implicae on your life in any way......not until the very moment it does........and some aspects it is too late!!

I want to stop ' preaching to the converted ' ........too fiking late for us.
And reach those of you who do not yet live with HIV
And think it will never happen to you an if you listen to me it NEVER will be of interest ??!!

If anyone is remotely interested you can follow us on either.
And we are so really OK at the minute. Doing really well on our ARVs and now me 63 in Feb and Barry 64 in Jan.
But today in Face-book I was today reminded of how dire parts of our journey has been so I will post the memory it brought up here.


As a post on Facebook reminded me of when Barry was really ill with AIDS and was discharged from hospital to come home as they could do no more for him. As it was by then a question of if the drugs worked for him he would live, if not he wouldn't.

One horrible night I had to call out the duty Serco doc as he was so very ill, could not breath, was puking and distressed and it was so very scary. For us both.

It has changed now and thank goodness -

I called the duty doctor service in real desperation, I am his partner/wife ( since 1985)  and then at that time his nurse and I also had not long found out I also had HIV myself and my numbers were also not at all good.

I was was sooooo alone with it all.
We had no help really then at all . Except for Barry's 2 friends. You know who you are and we will never forget the support you gave him and your kindness.
But no one except one of them came to see us or offered us anything at all.
We felt we were and in essence we were, truly alone.

I had therefore to call them........ I tried not to but I was so truly scared that night. I am not medically trained I am not a nurse although I had to be one. If he had died that night no one could have changed that. But I wanted his passing, if it was to happen.,  to be as good as it could be. I felt inadequate to achieve this .

So I called our then out of hours doctor service this totally disinterested doc who had been brought in from Spain to do the weekend shift in Cornwall for huge/shit loads amounts of money and who could hardly speak english and had not even bothered even to read his notes.

Nor do I even think he even looked at Barry at all - except to enter the door  just inside his room which was dark as Barry was photosensitive then and could not stand any light. Just to stand by the door and ask him a couple of questions.

I was a wimp as was so upset then and living with HIV myself was so very new to me ( and the last time I had been so 'close up and personal' with HIV was when my close friend and one time lover Derek died of AIDs in 1984)

So I was so very scared and said to the doctor I was scared he would die that night.

The doc said No he will be playing football for England in 50 years!!!!!

As he was already then in his 50s and has never in his life played or liked football and will be 100+ years in another 50 years . It was dire at the time and so scary to find in truth we did not even have any real help at all, not even from a doctor we called.

But we often joke about this now.

Whenever he gets unwell now we ask is it time for him to take up football finally before its too late?