How I met Barry

This is what I wrote on facebook about how I met Barry and why I am with him.
And still with him even though he gave me HIV

There is a lot more too it than this in fact . I would have to write a book to include all that happened for me and for him, but this is it in short - very short!!

I do not fool myself that anyone, other than me, will care or anyone wll read this except for me but I want to record it as part of our journey together.
As this was why I started this blog, as our own personal journey from diagnosis with HIV

Also/in addition!!
I so hope my lovely daughter will one day see this and know for certain that whatever a 'pigs ear' I made of bringing her up and however bad it was for her............unlike my own experience, she was born totally out of love , and we love her, she is part of out love  and always will be.


Love you so much Caja!!!!!!
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I met my now husband in 1980 through a friend -  Mary Beaman.... love you Mary sorry we have drawn apart ............  while living in south London. She lived in the flat under mine in fact.

Barry became one of my best friends.

At the time I was a feminist and at times promiscuous but mostly with women, and while I had sex with some men, my only serious relationships were with women as men had abused me, let me down and so many other things I truly felt I would never have a serious relationship with a man again, although I still fancied them sexually.
But I did have a sexual  on and off relationship with a folk musician at the time called Pete and before that someone called Richard  ( who I had been seeing on and off since I was 16 years old!!!) 

Neither abused me but also neither respected me in my view or saw me as any real prospect for any real relationship or saw me really as anything but an easy available - to them, an easy lay!!

Little did they seem to realise that  in terms of men, they were the only ones I was available to and the only men I had anything to do with sexually and for many years)

And really I would then not consider to enter Barry, my lovely friend Barry into my world as it was then.
As he was such an innocent, compared to me he so was!! He would say he was not, but honestly he was! He knew how to drink and smoke a bit of dope but in terms of sexual relationships he had only ever had 4 and all of those were long term. I loved my innocent friend Barry.


We all, or mostly , think of men as those who  have the upper hand, and it is men who abuse women?
Yes I think by and large this is so
 But by then I had had enough of being abused, taken for a ride, treated like a piece of dog dirt


~So by then I took what I wanted , and when I wanted.
If anyone was abused then it was Barry by me !!
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Barry and I were therefore friends for over 4 years and I never considered having sex with him as basically our friendship was too precious and so rare that  I felt that to do so would change the equality of it and ruin our friendship.

He didn't try and in fact was unlike me, he was  someone who did not ever have random sex, not with anyone.

He had only ever had sex with 4 people in his life - he was over 30 by then- and i knew he would not have sex with me unless we were in a long term relationship and I did not want to alter our friendship as I did not think I ever wanted a long term relationship
And he seemed to want me as a friend only.


Then in 1984 he decided he was bored with living in London and the shallowness of his life in London when he was home from sea, basically drinking partying, smoking a lot of dope,  and having fun, or rather trying to have fun. But in fact it was not fun, he felt empty and wanted a different life.............................

 So he decided to move deep in the country as far away from London as possible and bought a small cottage in Cornwall.

While he was preparing to move I realised I could not live without my now best friend and I loved him.

But I was too scared to act on this and did not want to change or influence his plans as I did not think it fair to do so. And did not know if i could have a proper relationship with a man, and knew this was all he would ever want.

So I remained his friend, supported him to move to Cornwall, 250 miles away..

I also had a VERY senior and well paid job as a senior youth worker, I was in my 30s at the top of my career, owned a lovely flat in Wimbledon London had lots of friends and a good life and knew that in backward rural Cornwall I would never get a job at this level again.

But I missed him so much, he missed me, I visited him in Cornwall every holiday and he visited me for 2 weeks when home from sea.

 One day when staying with him in Cornwall we had sex and I realised I really loved this man. I knw it before, it was not the sex, but this somehow made it clear!!

It turned out he did not want to pressurise me so until 1986 we conducted a long distance relationship.

Seeing each other only every 10 weeks or so when he was not at sea this was a time when there was no Internet, phone calls were so very expensive etc and he was at sea with no way of contacting him for months at a time.
It was a totally different world than the one we all live in now!!


I continued to have on off relationships with others, but I was very unhappy and missed him.

In the end I suddenly had enough. In the space of a week I suddenly decided to throw my life as it was then to the winds
I decided to sell my flat, leave my job and just risk everything and move down to his cottage in Cornwall just to be with him.

Which I did.

In the space of  3 months I sold my flat left my job  - I had been there 7 years and had a job at West 14 Girls House, Based at :  73 Talgarth Road, London, W14 http://maps.google.co.uk/maps?rlz=1T4ADFA_enGB453GB455&q=73+Talgarth+Road,+London,+W14&um=1&ie=UTF-8&hq=&hnear=0x48760f9591289595:0x40ffcb921cf5ed10,73+Talgarth+Rd,+London+W14+9DJ&gl=uk&ei=3yElT9TSMqHU0QW_s-TOCg&sa=X&oi=geocode_result&ct=title&resnum=1&ved=0CCIQ8gEwAA

Such a shame as I can see on Google that it is no longer any kind of youth house or charity, as it is now a privately owned house.

 Yet I gave it my best shot and my most productive working years and I so hoped that it would continue after I left. But I know it folded very shortly after I left.

Maybe now they know how much work I put into it??
I agree I may not have  been a great employee!!!!

But I did my very best and they did not sack me and I truly

loved the girls and young women I worked with........so if my management did not sack me that was their problem and I thought in fact I was very good value for their money??

But they would have found it hard to get rid of me????
 However in 1986 I gave up this secure job and a job I loved......because I wanted to be with Barry

  - So I sold my flat and I then bought an old Luton van, packed absolutely everything I owned into it and my 2 cats and drove  250 miles to Cornwall

I was risking everything as he would not commit - It turned out because he knew I would not be able to work at the level I had in Cornwall and he was a friend as well as a lover and did not want to destroy or be responsible for altering my life.

 But I did not know this so drove with everything I owned to his cottage in Cornwall not knowing if he would not want me there

 Luckily, for me,  he did, with all his heart.

He is just not a risk taker and would also not do anything to risk my life either.

The rest is history. I was right I never did get a job at the level I was at in London in Cornwall. I did work for 14 years as a youth worker here but it was a very sexist work environment and women did not stand a chance at a senior job. Things changed in the end,  but far too late for me, as by then I was burnt out and ill.

But we sold Barry's cottage bought a rambling derelict smallholding together with  the money from the sale of my flat money and his money from the sale of his small cottage in Ashton.

We have been renovating it now since 1986 - a lifetimes work .....for what I now  sometimes wonder ???? It is our home and a lovley view but wonder sometimes if it has been worth the effort of over 20 years of renovation, just to live in a smallholding?We had a daughter in 1989 - after many attempts and miscarriages ........maybe I should not have tried but we so wanted our daughter , a child of our own that was begot from us both - it was hell the fact I miscarried several times and Caja's birth.....well several times and I so nearly died .........we are both so very lucky to be here now
.
......but I am so very grateful I had her.S he is amazing.  I just hope one day she reads this and will feel the same too??


We also had foster child before Caja one after wards and it is now 2011 and we are still together and always will be

This is why when people question that because he was unfaithful just once during a stupid drunk moment when working away at sea for 6 months, lonely and probably because he was 50 and had never sown any wild oat sexually so had his only moment of madness in his life, and and people question it was more than once and he was a serial adulterer, I know this is not possible!!

I know him so well and know that sadly that brief encounter with that woman in Brazil was the only risk he has ever taken in his life and how much he regretted it even before it was finished .

And I am so sad for him that unlike many he could not even get away with just one fling!!

 As he got HIV from just one time and gave it to me and lives with guilt every day despite the fact I have long forgiven him and I do not want my lovely husband to feel guilt.

 And we are in this together to death do us part , just as we always were and HIV alters nothing in terms of our relationship.

Me?? My Heath etc

Me??My health problems are minor compared to Barry's, as I do not have cancer like he does.  So I truck on, we both do.

But I do have disabilities and conditions as well as HIV that affect my life. And all but the ankle fusion has happened since I got HIV

I have an ankle fusion so I have to walk with a stick and it affects my ability to do many things, high blood pressure and high cholesterol ( both common in people with HIV and on certain drugs and the drugs increase the liopids in your blood. Barry is on the same HIV meds and he has high cholesterol too and we are both on statins that gives us side effects)

I have psoriasis which is so very irritating and I did not have this before HIV.

But the most limiting thing is I have had  severe problems with my hands for the last couple of years.
This makes even typing this blog so very difficult - which is another reason I do not update it often.

I already knew I have carpel tunnel and cubital tunnel syndrome in my hands but also something more than this was going that affects my left hand and wrist mostly but also my right slightly,  but I could not get a diagnosis for a very long time.

But I have now found out what it is thankfully ? As I have been diagnosed with Kienbocks Disease at stage 3 in the last 15 months. Kienbocks is a very rare condition that is a form of avascula necrosis in your writs/s. Whereby a small bone, the lunate dies in your wrist or wrist due to restricted blood flow and the bone collapses which is painful and affects the use of your wrist and hand.
http://www.patient.co.uk/doctor/Kienbock's-Disease.htm

Above is an Xray of my wrist where you can plainly see the lumate bone is dead as it is very white.
This Xray was before it started to break down, it is worse now as it is breaking up.
You might think that one tiny bone can not be much of a problem??

But believe me you need EVERY!! bone in your wrists to work perfectly so as to have articulation and therefore proper use of your wrist and hands. Also you are constantly moving your wrist and hands and a dead bone is like having a permanently broken bone in your wrist and as it is forever you can not wear a cast forever and it would not heal anyway, so you are constantly moving a broken wrists and the pain is considerable.

It is not really known what causes it but a fall or blow to your wrist can set it off and also avascula necrosis of all kinds is a condition that people like me who had undiagnosed HIV for long enough for their immune system to be seriously damaged do get. But usually in the hips not in the wrist. So my Kibebocks could be due to this? Another reason everyone to be regularly tested for HIV and to know your status - its too late for me.

I had an operation to relieve the Kienbock pain and symptoms in November 2011, it did help a bit. I had denervation - a process whereby they cut some of the nerves to the bone so you do not feel the pain, but it did not do a lot and it is incurable - like HIV sadly - http://en.wikipedia.org/wiki/Kienbock's_disease

Untreated it will get worse and my wrist become misshapen and unusable and when this happens they said they will fuse it but for now want to keep the flexibility in my wrist as long as possible.

At the same time as this operation I also had decompression of the cubital nerve on my left wrists which has partially helped.

I do really need the carpel tunnel syndrome operation and the cubital nerve decompresed on my right. However it was suggested , and I agreed as I really do not want to have more operations and general anaesthetics than need be, to wait until I need my left wrist fused and have the carpel tunnel on my left done at the same time and then the right cubital and carpel at a later date once I have recovered from the wrist fusion.

I have been told that that in my case Kienbocks could be due to having undiagnosed HIV ? But who really knows? Not my doctors it seems?
All I know is I have HIV and now I have Kienbocks and life is now changed forever for me!!
Well that is all the sob story you will get here

Sorry if this is gloomy, but I wanted to put my blog up to date, but we both truck on
And I having done so I will resume by blog updates on a more positive theme from now on.

Doctors & Consultants do not always know best - so always question!!

We have been quiet for the last few months as we have had a lot to cope with........... And it is ours to cope with who cares really except us?

But I wrote this on facebook, so I may as well share here?

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My husband has a history of early Prostrate cancer in his family, his older brothers have prostrate problems, one has prostrate cancer and their father and other males in their family died of it.

Yet he got a negative reaction here in the UK when he asked to be checked for prostrate cancer just over 2 years ago . He is now just 60, he was then 57. He was told he was worrying about nothing and he was too young to have prostrate cancer?!

His internal examination by his GP was very so brief and showed nothing and Barrys prostrate did not seem to be enlarged to this doctor, but the PSA test was high and this was a GP, not someone who specialises in cancer.
However despite high PSA he was told at his age he would/COULD!! not have it!!

But we knew better and fought and insisted it was investigated further.
He eventually had a biopsy - which is the only way of really knowing!!


It turned out he had stage T2a prostrate cancer - probably not outside the prostrate but would swiftly be if left and of an aggressive nature.

http://www.prostate-cancer.org.uk/information/treatment/treatment-choices/brachytherapy

He has now just completed 'Permanent Seed Brachytherapy' - a very up to date and effective radiotherapy that we had to fight to get and Barry had to travel outside Cornwall to get as they do not do it here in Cornwall, UK.

We are waiting to see if he is clear? To know for certain may take some years

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But we have had such a fight with our doctors to get this for Barry !!

They wanted to give him a radical prostatectomy!!! Which would 87% leave him with urine incontinence and wearing a catheter for life and almost certainly impotent!!

Many treatments for Prostrate cancer leave men with some impotence but with prostatectomy it is almost certain.
And it is not neccessary except in cases of very advanced cancer and Barry was not at that stage and a prostatectomy is rarely done on someone of Barrys age anyway!!!

So why did they offer him only a prostatectomy and why did we have to fight to get a less radical treatment?
Because he had HIV that is why and those treating him were not up to date with recent research on radiotherapy and those with HIV and referred to a way out of date research , done in the 80s and in America that said men with HIV can not have Radiotherapy of any kind because they do not heal. 

But this research was done in the 80s, before the modern HIV meds and about bowel not prostrate cancer. Up to date research has shown there is no risk now!

The worse thing about this for me was is as soon as they said Barry could not have any form of Radiotherapy due to HIV, I knew 100% they were wrong!!

But I am NOT medically trained and I was so scared I could not prove it. And I had to as Barry said he would rather die than have a prostatectomy and I knew he meant it!!
So I was faced with the daunting task of proving to a team of oncologists and urologists that they were wrong!
And I will not go into the details, but I did prove it, but it was not easy. 

 I even had to find the up to date, peer reviewed research, and even give them a volume number and page number of the medical journal it was published in and supporting information!!
Why as the wife of a patient did I have to do this?? It is not right - thank you NHS!
I support the NHS with all my heart, but in this case they really let us down! Could not these highly trained doctors be able to get over their ignorance about HIV as it is now and read up on latest research??

But I did prove it - Barry did not have to have a prostatectomy -

But even so it has been so hard a journey over the last year or so.

I just can not tell you how hard and I can not go into the full extent of our battles over the last year or so, just to get Barry treated at an early enough stage.......but believe me the doctors certainly thought they knew better than us......and it turned out they did not at all!!! - His consultant even apologised!!!


I of course do not have prostrate cancer but I am sure affected by it !!As I have been Barry's nurse, companion and only support through it all.

Barry was able to have Brachytherapy which is less intrusive than regular radiotherapy and may indeed be cured - we do not know yet we are waiting to find out.
It has affected him in so may ways that I can not go into , but just let me say , the last year has been very difficult to say the least.

And he  is in fact now parcially impotent - as so many men after treatment for Prostrate cancer are.

Brachytherapy is supposed to affect sexual function the least but all do and Barry was not one of the lucky ones.

This may resolve in time however and I hope it does. As we have tried everything now,  Cialis, Viagra and Levitra, etc. And  he can not bring himself to inject his penis and I agree if this is not for him, it is not for us!!!!!!  and as someone with prostate cancer he gets all this free in the UK,

But nothing works. This may seem a small problem, and of course it is not compared to living and surviving prostrate or any cancer but sex is part of a quality of life for us all?
ISNT IT!!?

And believe me it is a very big thing for a man , especially a man like Barry who is so full of life and wants to live it and is only 60!! Men can beget children and be potent until their 90s , so to be impotent from 58 is a very big thing!!!

So this will may improve but has not so far and and I will live with this happily but he has more problem with this than I?

Not good for either of us - but it is better to be alive

SHAME ON ME!!!

I have not written on here for so very  long ................

SHAME ON ME!!!I started this blog thinking - stupidly? - that to write it may help others avoid what we have, by avoiding HIV, and that I could aise awareness.~but I have been so very disheartened as I am no longer sure that those who do not realise hat they have a risk want to know they have any risk?

That so many just want to believe that HIV could NEVER affect them and could never be part of their lives?

So for the last many months, I just kept thinking what is the point, who is interested anyway? I do not want to dwell on what we face and who cares anyway? - we care but it is our stuff and ours to face

But now I am back. This is our record for us, and our friends and perhaps for our daughter who we so love despite the fact right I know she does not think she wants to know right now ansd mybe she never will?? But this is us , her parents, the ony ones she wil ever have.

And I did not have a good story either but while sh may not want to know now,  I know many years later I would so have wanted to know about how my parents saw it -warts and all -  .

So here goes.......................................................................  

That I have been quiet does not mean our life has been quiet

Since I last posted much at all we have had the following happen .
Thinking we were OK, that yes we both had HIV but since Barry got well and I felt better since we went on the ART with the HIV meds we had a 'weather window ' a reprieve so  we could expect to be well for a few years yet?

So we continued to live our life to the full as always.
So we  started to demolish half of our house to re build it  as it was falling down and we have meant to do it for over 25 years
This was a very big mistake .

As shortly after we started Bary got diagnosed with Prostrate cancer and had to start treatment for this .
Prostrate cancer is not linked to HIV so he may well have got it anyway. Bu tit is very young to get prostrate cancer and people that live with HIV are  50 to 70% more likely to get cancer of all kinds, not just AIDS defining cancers.

So who knows if he would have had prostrate cancer if he had not had HIV?

Then I found I could not use my hands hardly at all and got diagnosed with Kienbocks  http://en.wikipedia.org/wiki/Kienbock's_disease

Which is a form of avascula necrosis , which some research thinks is linked to HIV and the ARV meds. http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102241441.html

But the jury is out and more research needs to be done .
But basically for me I think it has to be linked.

But who knows?
All I know is Bary is now fighting cancer, I have Kienbocks - which is not good news considering I already have had an ankle fusion and have bad knees and difficulty walking so this was the last thing I wanted to happen .

But life goes on
What choice do you have?

HIV is for life - HIV is a huge learning curve.

New beginnings - HIV is a huge learning curve

I have not updated my blog for a very long while.
I apologise but in in the meantime I have been learning , learning about what living with HIV is really all about and how fruitless anger is. It does not matter who you got HIV from, we all got it from someone, and the chances are that, unless they are one of the very few, they did not want to get HIV either??

So in the last few months or so I have been quiet and learning.
Learning what it really means and from those who have been there long before me HIV had its 30th anniversary this  week.
And you know sadly it is only now sinking in for me that HIV  is my life now, and forever

What we face as women Living with HIV in the UK

Rather than reinvent the wheel I thought I would post here a speech given at The Sophia Forum Round Table meeting, at the House of Lords by Silvia Petretti on the 18th January 2011.


Silvia is a woman living with HIV who I count as a friend who I met through the National womans group PozFem UK.
She also works at Positively UK as Community Development Manager.

This speech gives a good idea of the issues facing women who currently live with HIV in the UK

http://hivpolicyspeakup.wordpress.com/2011/01/19/visibility-voices-and-vision-a-strategy-for-women-and-hiv-in-the-uk/
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I would like to thank the Sophia Forum for inviting me to speak today, and for all of you for being here.
I am a woman living with HIV and I work at Positively UK as Community Development Manager.

At Positively UK we speak to hundreds of HIV positive women every year. We meet them in support groups, through the help-line, we meet them in hospitals and during outreach to prisons. In spite of all of our efforts we only reach several hundreds of the over 21,000 women who have been diagnosed with HIV in the UK. And reaching those women is becoming harder and harder as funding for women’s specific services shrinks.

As you have heard from my colleagues as women living with HIV we face many challenges: Sophie has highlighted the challenges of those of us who go through the Criminal Justice System and Angelina the different layers and complexities that HIV adds to motherhood.

From a strictly bio-medical point of view many of us are doing really well. And I have heard so many times that HIV should be ‘normalized’ and treated like diabetes. But for most of us who are living with HIV in the UK I know that it takes more then pills to live with dignity and safety.

An area in which positive women find enormous difficulties is the area of relationships.

This is a sphere of particular importance for women. Of course every human being has a basic need of feeling loved and appreciated. However, this need is amplified for women. The way gender plays in society means that women still gain a lot of status through being in a stable relationship and having children. HIV on the other hand comes with an immediate loss of value as a person in society, and this on top of other socio-economic disadvantages women face.

The pressure of being in a relationship, combined with the anxiety of being rejected because of our HIV status pushes us very often into dangerous relationships.

2011 has started with some stark reminders of those dangers. During the Christmas holidays I was threatened with violence by an ex partner: the fact that I am a woman living with HIV, made me a potential ‘killer’ and of course of dubious morality. This was very much at the centre of the verbal attack and the threats of physical violence. In my ex-partner’s mind I obviously deserved to be treated like that because I have HIV.

I was shaken, and hurt, but thanks to the support of friends and family I was able to feel a certain degree of safety. For many women for whom HIV is still a dark secret to be protected at all costs, it would be impossible to talk to anybody about such an episode and this sense of safety would be unattainable.

When I returned to work I found out that another positive woman, a close friend, had been physically assaulted and beaten. Within the first few days in January I also received a phone call from a young positive mother who is in an abusive and violent relationship, which is profoundly damaging to her and her baby.

The truth is that hardly a week goes by at Positively UK that we do not hear of a positive woman being emotionally blackmailed, abused, threatened or physically attacked.

I have used my personal example because I want to dispel the myth that violence against women is something that affects only ‘certain’ women: the 'vulnerable', or the ‘African Community. I am afraid that among women with HIV in the UK this goes across class and colour: it’s part of our reality. I do also recognize that poverty, immigration issues, isolation and fear of HIV status being revealed: create insurmountable obstacles that lock positive women in these dangerous relationships.

I do not have a research paper to back this up. I have 10 years of experience working for a women’s helpline and facilitating support groups.

On a global level the UK through Department for International Development has widely acknowledged the strong link between gender inequity, gender violence and HIV. However this link has never been acknowledged in any national HIV policy strategy here within the UK.

At a very personal level I have asked myself: why has this happened to me? why is this happening to us as positive women? Are those men just individual ‘monsters? Who else, or what else, has a role to play in this? And I believe it is important to recognize that these are not isolated episodes but they continue to happen in the context of our societal views and attitudes towards women and HIV.

Today I would like to ask you here in this room, many of you being influential policy makers: what is your role in shaping those attitudes? What is your role in stopping violence against HIV positive women in the UK?

Obviously when HIV positive women face such complex and difficult circumstances as those I and my colleagues have highlighted it is not a surprise that our health, physically and mentally, is affected. Research shows that women have worst outcomes in regards to HIV treatment. This is due to several factors, including low numbers of women in clinical studies, and lack of studies focusing on women’s issues outside pregnancy. It is no wonder then that there are still only about 30 of us women who are fully open about our status here in the UK: just 30 out of about 33,000 women who have HIV here.

However, I know from the work we do that peer-lead support enables women to regain a sense of self-worth, and this has a positive effect on our mental and physical health. Peer support is important in enabling us to disclose our status, or in giving us the confidence to leave abusive or violent relationships. Being more open about HIV improves our adherence. Adherence means less resistance to treatment and no need to switch to more expensive regimes. Being successfully on ART, with an undetectable viral load, combined with openness about HIV status, also creates the foundation for preventing onward transmission. And we all know that new infections are very expensive to treat, as well as a personal tragedy. Finally, when women are appropriately supported in their psycho-social needs they require less face to face contact with their health-care providers. In brief: peer-led support for HIV positive women not only has health outcomes, but makes economic sense.

To conclude I would like to point out some recommendations which will allow us to continue to do our work, I also hope that this session will enable us to hear your ideas on other ways forward:

Firstly, we need some robust evidence to back our work. We need resources to develop participatory research around how gender, HIV related stigma and gender violence affect our lives as well as research on the effects of peer-led interventions.

Secondly, we need better partnership between the scientific community and HIV positive women. Scientific research, including clinical trials, should involve and support HIV positive women at every stage, from formulating questions, to collecting and analyzing data.

Thirdly, and most importantly, that support for women’s centred services and networks has to be long term and sustained, so that we, who are directly affected, can develop and maintain the strength to challenge negative societal views of HIV positive women. Stigma will end when we are visible.

Dairy of a rural HIV Cyber Activist

I have decided that if I need to define myself at all this is what I am. As in the very rural area I live in there are few HIV agency or organizations and none that wish to work with me in my aims to challenge HIV attitudes, stigma, raise awareness and educate predominately amongst HIV neg people. So all I am left with is the virtual world of Facebook, twitter and blogging from behind my own computer in my remote rural home.



From the very moment I was first diagnosed HIV, right from the start I wanted to ‘do something’ to make a difference. This is apparently not an uncommon reaction to being diagnosed HIV poz and many people shortly after diagnosis fling themselves into voluntary work usually with or to support other HIV people or even manage to get paid jobs with HIV charities or organizations



But I quickly realised that my aims in this area were not did not always gel or sit nicely with the aims of other HIV poz peoples aims and endeavours in this area.



As when diagnosed I knew no one who also had HIV and literally thousands online and in person who do not have HIV. And while I’ve met a few who are HIV+ since, due to the clash of fundamental core reasons, beliefs and rational between what I want to do and why I want to do it I don’t and I may never have any close friends or know many that are HIV positive too. The reason for this is something I will try to explain and expand on here.



As my interest was not ever and is not to inform those already HIV positive.

As put simply and it is a lot more complicated than this, I figured, which later turned out to be true, that if you have HIV in a very short time you know more than the general public about HIV but sadly apart from treatment options and research into cures and treatment, what you know is no use to you as in many ways it’s too late for you.

Nor was or is my interest to primarily to support others like me who are HIV positive.

This does not mean I don’t want others to have support or that I do not care. As I do care very much that those who are HIV+ locally, in the UK and anywhere in the world get the best treatment they can and are supported in every way they need.

Also after all myself and my husband are HIV positive, indeed we were both diagnosed when ‘officially’ we had AIDs and my husband has already been very ill, been hospitalised and had PCP, an AIDs defining infection. And understand the need for support when you are HIV+ and wish there was more and better support, especially emotional support and will champion anyone who offers this.

Sadly both my husband and I have not managed to get any emotional support that works for us. I am not saying that people have not tried so it may well be a lack in us not the very few services we have been offered, and while we at the moment manage to just about rub along and cope psychically and practically with little or no support right now, we both know there will come a time that one or the other of us or both we need lots of this kind of support. All I can hope is that when this is needed those that can do this and for whom it is their skill will support us.



However this is not my skill. I have always been an activist or probably more of a pioneer, as one friend described me., in lots of stigmatised issues and campaigns before I ever had HIV.



And a pioneer in stigmatised issues does not make many friends, they are often feared because they speak out and refuse to do otherwise and cannot be controlled. A ‘wild cannon’ is how I have been described in the past and while this is not totally so as I do nothing without at least considering or knowing what I am doing and not without thought and considering the consequences, this is how I am often viewed by others.



Those like me who take in all information, weigh up what they think and still speak out with what they believe and are not deterred from this by others views and so often ‘go against the grain’ are often disliked, can be feared even by those who also share the same issue. Many that do at first befriend you when it is realised that your voice can not be tamed disassociate with you or don’t want to know you.

And while this is at times so for other issues at I have found it completely and always true when it comes to being an outspoken activist on HIV with HIV living in a rural area, or perhaps living anywhere.



And so being an activist like me I have found often makes it impossible for me to support or even be liked or associated with by other HIV people. I get far more support ironically from HIV neg people with very little idea of the issue than I have ever received from those HIV positive or those working to provide services for those HIV+



I understand very well why and maybe at some future date I may explain but for now I just have to say that this is so.

I do find I can be virtual friends online with those who feel safe because they are never likely to meet me or with other activists that live in other parts of the country. But in terms of having any face to face support or just anyone to talk to and share situations and bounce off of with ideas and views etc from any other HIV+ people that live in my rural county that I could meet face to face, so far this has proved impossible.

Most I meet in person and not online with HIV are scared of even being seen on the street with me in case their own HIV status is outed by association. Others are scared I may, while using others stories to make an awareness point that I may accidentally expose them.

The facts are I do and will not do either as far as I can avoid it but at the same time I will not be silenced or muffled and attempts have already been made to do this.



But that by association with me their own status was exposed would not happen as easily as other local HIV poz people far as one I think about what I am saying or writing and the consequences to others as well as myself and I just do not understand why so many think I do not and seem to assume I talk/write completely without thought and say anything that comes into my head? All I can say is yes I am impulsive at times especially when upset or fired up over an issue but those that think I do this as a regular thing just really do not know me or who I am. Everyone makes mistakes sometimes, but if I remotely put another’s status in jeopardy of beign exposed if they are not out and have not given me permission, I never do and never will do deliberately. But everyone makes gaffs or mistakes as much as they try to avoid it. But it seems that in the eyes of other people that are HIV+ but not out there is not room for me to make the odd very minor mistake that I will put right as soon as I am made aware of it.



I understand why, and accept that this is so. As while many non out HIV people think I do not get it and do not worry about what people think of me or whether I am judged or stigmatised and do not get their fear. Believe me I do and fully accept why they may not want to know me. But accepting this and understanding does not mean I am not often lonely and hurt by this lack of trust and friendship of me from other HIV+ people

And also as I know few HIV poz people locally that I would ever meet face to face and while I may have few close friends - especially since I found I was HIV and have become so outspoken. As I have lived where I do in a small rural community for nearly 26 years really do know by acquaintance at least and they know me, hundreds of people who are HIV neg so no one would even think if I was talking to someone or was with them on the street or in a café, pub etc that my companion or the person I was talking to was HIV poz.



And I assure all that when using others stories to illustrate a point to raise awareness I only deliberately use the stories of those I have permission to use and unless I have express permission never names or where they live. That some that have not given their permission have assumed I was talking about them when I was not, I have to say this is their own internalised stigma and paranoia and nothing to do with me as I never out anyone deliberately.

But oh yes I am not perfect. I am sure I have made some mistakes in this and will again. But if I am to try to do what I want to do and raise awareness and fight stigma it is a risk I have to take, and one that they have to take if they want to know me. But I do think before I write or speak and I NEVER deliberately our s anyone’s status unless they are fully open themselves.



One day I hope one day to meet like minded people with HIV in Cornwall who are open or sufficiently open about their status not to be scared of me, and can tolerate the odd slip up in the pursuit of raising awareness but so far I have not.



As you can imagine this is a very lonely place for me to be right now



Anyway as said my interest or rather skill is not in supporting others with HIV but in challenging attitudes, educating and raising awareness amongst HIV negative people in the hope that they will ‘get it’ remain negative and also cease to stigmatise those of us who have been so unlucky as to already have the virus.



To do this is counterproductive it seems to being friends with other HIV poz people. Well it is in my very rural area anyway and to a degree elsewhere . And even counterproductive to me even working or volunteering with my local HIV charity, and other charities etc further afield as their main concern remit s to support their ‘clients’ and not to raise awareness and challenge the attitudes of HIV neg people.



Each to their own is what I say. We all have our interests, skills effectiveness and paths to tread. Understand I tread mine with thought and take risks that I know will alienate me with thought and because I want and need to. If you cannot be my friend and support me leave me alone to do what I have to do.




I will not interfere with your path – do not interfere with mine

HIV philosophy - does it exisit?

Are you religious? Or do you muse philosophy as I do at times?
HIV poses interesting questions for both religion and philosophy

Well in terms of religion I am in fact a believer in that there is a something for sure. Butwhile I have tred for my whole 50+ years of life I am not yet convinced of what it is and may never will be. So I'm a not sure what as yet and still questioning .
So I am agnostic  - not an atheist - There is a real difference - look it up on Google!! 
Philosophy - well it has not yet caught up and encompassed living with HIV as yet - it should though!!

But the main spiritual/philosophical  issue I debate in my own mind right now re the HIV virus is ??...................

Does the  HIV virus  has a much right to live and survive as me or any thing else on this planet?

In a way, as a entity created on this planet Earth  - the wonderful planet that gives and sustains  us all life - to my mind  has the same rights as any of us, animal or vegetable - doesn't it? 

Humans only put themselves at the top of the tree because they wanted to and due to their social intelligence and self awareness could get away with it ?
It does not mean it is true at all does it ?

There is no logic in anyone believing that humans are more important than any organism on this planet or even in the universe is there?

There is NOTHING to say we as human beings are more important to survive than the HIV virus or anything else in this finite  bubble of that blue planet Earth has produced to share our lives - is there?

If we believed this, it would be total arrogance wouldn't it?

As a wider and philosophical issue,  I also believe this may be the case ?

But on  a personal level if I could  kill this HIV virus dead, right now and today, if I had the chance I would not hesitate for a single  moment !

The Killer Virus Parasite HIV

This is how I see HIV - To me it is a Parasite Virus that Kills.

• Sure you will all be so very bored if you read this, so please don't read it ! Just stop now! It may be rubbish but is my blog so I wanted to explore this.
• So felt I  had to write it as this is how I currently see the damn virus that is HIV

HIV is a retrovirus. So what is the HIV retrovirus? - put in my own- very -  lay persons words and my own limited understanding?

• A retrovirus - - is a virus that takes over cells and becomes part of them and replicates itself to be become part of your own cell system : http://en.wikipedia.org/wiki/Retrovirus

So basically a HIV in my understanding/view is a 'virus parasite' but sadly unlike some/well many  retroviruses one that, if untreated, eventually kills its host.


And there is strong evidence that monkeys were an original host to HIV  but it has now since it trans-species jumped  it has mutated and evolved so that humans are now, currently  its biggest and most successful host.

Actually is seems to me that humans are a far better host than Simians. As unlike simians ( monkeys) we have no immunity to this virus, and unlike simians we travel widely outside our immediate social groups

• As there is now overwhelming research evidence that the HIV virus has lived with, and alongside, simians (monkeys, chimpanzees etc) for thousands of years and thus evolved with them. And that therefore that a mutual impasse was reached in terms of fatality to its simian host and the ability to spread widely outside of  unique social groups of simians - that is until it jumped species to us - humanity .

So evidence would suggest that we humans are comparatively a very new host to HIV !!!  
 And we humans travel widely outside our family and social groups.  

Unlike Simians who did not have the advantage of aircraft and cars etc and so stayed comparatively in very isolated in small groups. So research evidence suggests that HIV infection among simians were very contained within fairly divided and remote groups. 

Not only did it not spread widely when only simian the HIV virus was not often cross infected between groups and thus not as easily mutated as it is within humans.

But we as humans now have the HIV virus as it has long made the jump to our species!
 And we - unlike simians - interact widely outside our immediate social group. 

We, interact,  reproduce, have sex just for fun  etc, outside our immediate social groups and we travel widely - in fact humans from our origins, just look at how we spread out even in the  stone age onwards? Travel is and has been a fundamental human drive/need too!!!


Humanity has always traveled widely, not just within our own continents/countries. Humans have traveled for thousands of years . 

But now due to air and other travel , we now travel all over the planet and have done for at least 30 years.


So basically we are so totally fucking ace at passing this virus it on to others outside our immediate social group? So we are the perfect host to this virus HIV? Amazing it did not find us many thousands of years before it did? Isn't it?


So do  you want it to win?

As if the HIV virus had consciously tried it could not ever had found a more effective host to jump to than humanity,  could it? 

We have to beat this one!

• i.e HIV is an RNA virus that is replicated in a host cell via the enzyme reverse transcriptase to produce DNA from its RNA genome. The DNA is then incorporated into the host's genome by an integrase enzyme. The virus thereafter replicates as part of the host cell's DNA. http://en.wikipedia.org/wiki/Retrovirus

So basically it takes over key cells in the hosts body - And so I am just currently and so very unfortunately just one of this viruses millions of  hosts - and it is so clever it takes over cells that are fundamental to that hosts very existence. (immune helper CD4 T cells in this case)

But HIV  is a very 'clever' virus. No I am not saying it is at all a  'thinking' organism.  As I am not as yet demented!!! Well not yet, nor have lost my mind, well not yet!

So I do not credit this virus with any' intelligence'! Well not as we as humans would see intelligence.
But it is a retrovirus and one that is determined to survive and one that will kill it's host if unstopped/untreated.


But it needs to pass itself on and survive. And us humans are such good hosts that we so easily die of it. As our immune system can be  so easily overwhelmed by it  ............................


So the virus has needed to evolve - and has -  so does not kill or make its host very ill straight away
 - that would defeat its aim - hence the often long latency period in humans. Often between 1 to 10 or more years for some.

And this particular virus has actually so very cleverly evolved to infect its hosts in the main through sex and reproduction.

By sex I mean any sex with anyone, gay, straight, bi, whatever............... the virus makes no discrimination................ and neither do I.

Only humans discriminate or stigmatize. We all have sex with someone or at the very least  play with ourselves! Anyone who says they don't ........well I guess I  can believe that some don't - but very few - but even so  they have to put their sexual energy's somewhere? 

For humans as a social and group species, we are just not designed to be celibate. Sex is a fundamental and great and to be celebrated part of being human........OH dear - I digress as always!!! Well its my blog. if you bother to read it is up to you!!!

Anyway by reproduction I mean childbirth and breast feeding - and feel what could be more insidious and awful than this!

i.e That if a mother wants to do her best for her baby. And do what is under any other circumstances than if you are a mother with HIV is the absolute best for your baby  - which is......................

• to have a natural birth as possible
• and not a Cesarean if you do not need one to save the babies life
• to breast feed Not to take any strong medication while pregnant or in childbirth

 Yet if you are a mum with HIV,  you can not ever do any of these totally normal and natural things if you are to ensure your babies health? isn't HIV so crap??

As if  you are to ensure your child is born HIV free - which any mother will want to ensure

• you are probably needing to take medication while pregnant

• have a Cesarean in most cases

• and you can not ever breast feed 

( that HIV does also infect humans through intravenous drug use, and blood products etc is not part of its cunning plan! This only happens because humans do other activities for enjoyment,  ratification or survival -  medical or other exchange of bodily fluids -  that are not actually biologically programmed, 
Due to the fact that humans have an unique 'self determination' and inventiveness' as a species on this planet that strays from what is set out for us as a living organism.

This  'eccentricity ' in humans the HIV virus did not of course plan for but it did take advantage of this when it was presented to it on a plate.

No a parasitic virus as it does not share our type of intelligence/self awareness, so it did not plan for us humans being its perfect host , but  took full advantage of it when  it found us  - well his may not make sense to you but it does to me!

So of course if this HIV virus made those who acquired HIV instantly ill and die quickly, it would not achieve its aim.

Which is merely - and only  -  to infect other hosts and live on.

And so the virus so cruelly gives many of us a bit of a breathing space - a latency period where we feel if not great, we feel OK.And so we continue our lives, continue to reproduce,  have sex - of any kind or any sexal orinettion -

and both are such fundamental drives - and if we do this and do not know we have HIV...................................


We may have infected others, and maybe - if we do no find out we have HIV in time - any children we may have.


So this virus HIVis  to my mind is so cruel!!!
And this parasite that is HIV really and truly has it taped - doesn't it!!

• As it knows how to bide its time to infect the most of us it can
• As if we became ill with HIV as soon as we were infected HIV would all soon die out with us as we died of it.

As no one wants to have sex or reproduce when ill or dying of AIDS!

Believe me when my husband Barry had a CD4 count of 8, PCP pneumonia,projectile diarrhea and other infections and I technically had AIDs because I had a CD4 of under 150, could not eat without vomiting, had galloping diarrhea, felt terminally tired ......
neither of us could have raised an arm at times and certainly could not have raised anything else to have sex with!!!!


So basically this parasite, this virus, is very clever as it  just bides its time.

It gives us a breathing space once we are infected. While it bides its time and gradually reproduces. But does not reproduce for a while to the point where it takes away our health and therefore fundamental will to have sex and reproduce.

A it t is soooo very clever ........as it gives us enough time since infection to feel the urge to do this and thus pass it on - this is where this virus, as humans, has us by the nail!

As while we are able, humans, not all but most, want and do have sex and want and do have babies!!! And why not its our right and our main drive as a species.

Probably I am talking total  rubbish?? But this is my blog!!

And  this is how I see HIV. As a so very effective parasite that is a virus.

It is not intelligent - it does not care - it just wants to live and reproduce and needs us as a host to do this.
has it a right to live?
But I want to live a bit longer too. So difficult !!!