Monday, 17 November 2008

HIV is very boring

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

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

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

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

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

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

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

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

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

But no one is remotely interested!!!

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

And very few are at all interested in finding out .

I guess like I felt before HIV ...

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

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

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

Healthy Gay Cornwall - a health promotion initiative

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

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

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

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

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

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

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

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

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

Monday, 3 November 2008

HIV meds or Not???

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

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

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

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

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

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

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

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

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

But who is to say alternative therapies do not work?

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

I am interested to know what others think?


Thursday, 30 October 2008

Forward Not Back - and Work and Yurts

Despite my recent posts, while I have been doing a lot of reminiscing recently - there is nothing like an incurable virus to make you review your life - I am not looking back at all but forward with hope into the future.

I no longer do paid work, nor do I feel that in present circumstances I could or do any employer justice and do a good job for them and if I work it is important that I provide value for money

But I left my main career youth work in before I had any health problems - well not any like HIV etc - having become stressed and disillusioned, not at all with the young people, but with the bureaucracy and the competitiveness of many others - adult line managers mostly- I worked with.

I have never done any job just for money nor just for the status or ambition. I have only worked when I believed in what I was doing and for the enjoyment of it.

You may say I was lucky as I must have had the means to do this i.e not work for money.

This is not so. I have not been financially privileged and have had to depend on what I could earn - until I was disabled by an accident i had never even claimed any benefits.

I have often been very poor in fact at times homeless, but to get up for work and do a job just for money and status never had any meaning or motivation for me. If I did paid work it HAD to be worth it for other reasons. If I work I always put 100 percent into it and to do this it has to be worth while.

Perhaps this is due to what I have experienced in life i.e deep Sleep treatment as below and other abuse and dire life situations. Despite this attitude to work I have in fact found much work that was for me worth doing and until recently worked most of my adult life since 15 - I was for example employed by Cornwall County Council as a youth worker for 14 years and in London for many years before.

But I began to feel stressed, unwell, had my mother in law to look after and my child did not like me doing the hours I did and also found I was disillusioned with the politics of paid youth work –

At that time I was fascinated by computing the internet as a new means of communication. I had started a support web site for those with Post natal Illness http;// a few years before and started to think that the internet was where it would be in terms of social and supportive communication in the future.

I still think it is in that it is a fantastic communication tool but no longer have the energy or means to be involved in its development

So I retrained by doing an HND in multimedia and web design and lectured for a while at a local further Ed college

But then I had a bad accident on my horse – I own a smallholding and bred horses – and it was touch and go whether I would have my lower leg amputated and I was in a wheelchair and quite ill, so I had to give up work. But I eventually recovered really well from that as I wore a horrible fixator and surgeons managed to reconstruct my leg over time and then fused my ankle and now I only have slight mobility difficulties due to this, I can’t run or jump of course but probably at my age I would not be able to anyway!!!!! so most of the time no one would notice now, except I use a stick when out.

But I never went back to work - I have never felt able to and have been pretty ill at first from the accident but as I had undiagnosed HIV from this too

Just as I was beginning to be fully recovered from my accident in terms of my leg healing , I began to feel very ill and my husband of 21 years became even iller!!! We discovered he had AIDs

A bit of a blow to say the least as he has given HIV to me and this was doubly upsetting as I have always been faithful to him.

But apart from that he is a lovely man and has been a great husband and has paid a big price for his one mistake so we are still together and facing whatever comes next?

But we are very lucky as in the UK you get the latest HIV medications and we are both now pretty well and hope to remain so for some time.

So while we do not work outside the home we are not standing still.

We have a small holiday letting apartment attached to our smallholding and let this out and we are expanding this to do ecco holidays in Mongolian Yurts – a type of very posh and warm tent as good as a cottage to stay in :

This is not my job as I am not physically up to it although I assist him where I can

But he is feeling quite fit now he is on the anti-retrovirals. He is not capable of the long hours he was and will also probably never again work outside the home as he needs to do things at his own pace and often needs to lie down for a while in the middle of the day - and employer would never understand this.............

But he is working hard when he can outside at the moment laying paths and putting up a cabin for the shower and the ecco composting toilet, ready for the arrival of our first Yurt at the end of November – we hope eventually to have 3

So we are looking forward and not back

Tuesday, 7 October 2008

Worlds AIDs Day

Worlds AIDs Day

Is on its way
1st December 2008
What can you do? What can I do?
I intend to do something in Cornwall
Do you want to join me ? let me know


Sunday, 28 September 2008

Stevie Wright , Easybeats and Bobby Limb

Looks like I am in very good company having 'experienced' so called Deep Sleep 'Therapy'

It seems that Stevie Wright of the Easybeats was also subjected to it:

As was Bobby Limb!!!
I am in good company then?

But they were both in Australia!!





Where are you all?

Why do I want to know?

Well, It is not to blame anyone personally and I am not obsessive - truly I am not .

  • If I had ever of dwelled on or been at all obsessed by this barbaric thing that happened to me as a teenager I would have surely tried to do something about it before
No ..................what has happened is having HIV has made me realize how short life could be and I have unfinished business I would like to resolve in some way.

One bit of unfinished business is that I was administered something called deep Sleep Treatment by the NHS for no good reason that I can see explained then or now - why I was subjected to such total abuse!!

I just want to find out why something like this was allowed to happen in a UK hospital and why those involved did not realise how destructive it was and how it totally infringed your person and your rights as a person as well as felt like abuse when you were the person having it.

And maybe I want to find out why it does not seem to be recognized that this barbaric practice was carried out within the NHS as little back and the 1980s and I suffered it .

As I have contacted various bodies and people in the UK and most thing that while DST did happen in th UK, it ceased in he 1850s - this was what MIND said of DST:

Hello Veritee.Thank you for your e-mail dated 19 March.

Deep sleep therapy was a 'therapy' that started at the end of the 19th century and was used in the early 20th century. Something similar has recently been suggested to help people coming off street drugs such as heroin - to sleep through cold turkey.

In 1897 sleep was induced with bromide. This is rather toxic, and they went on to use barbiturates. It was used to treat psychotic states. The idea was to induce prolonged sleep, after which people would wake up much improved.Some psychiatrists thought / found (?) that it facilitated psychotherapy.

In the 1950s someone in Canada went on to force people to listen to messages during sleep - brain-washing - to accelerate their recovery. The final stage of the history of this treatment seems to have been ECT several times a day- given during deep sleep, which also happened in Canada. You can find out a bit about this treatment in the book, A Short History of Psychiatry by Edward Shorter (1997), and possibly Roy Porter's book on the history of madness. These should be obtainable from your local library.

Mind does not appear to know that Deep Sleep Treatment happened in the UK and far beyond the 1950/60s!!!!!******

I probably will not succeed - is anyone interested anymore - I so doubt it!!! - but I may wish now to try

Here are some pictures of Park Prewitt asylum where I had the sleep treatment taken by urban explorers:

How did I end up in a mental asylum having Deep Sleep Therapy?

I shoplifted!!

Actually by coincidence I worked at Park Prewitt when I first left school at 15/16 as an ancillary in the geriatric wards - I could write a book about this experience in itself as many in my care had been living in the hospital for 30 years or more!!!!

Some women only because they had had a baby out of 'wedlock' and had therefore been considered 'morally insane ' others because they had been abused and others because they were what would now be called 'slow learners' . Perfectly sane people but just a bit 'slow' educationally and due to this they had had to live in that awful hospital and be institutionalized most of their lives!!

But little did I know that within a matter of a few months of leaving I would also be an in-patient in that dreadful asylum...............................

- but I was made laid off - no fault of my own - really they just laid me off - and was unemployed and homeless, then I became ill and phobic , could not then work and and shoplifted to eat!!!

Yes I was caught when I shoplifted a few tiny things, as I did not live at home with my parents and with no work I lost my accommodation, I had no benefits in those days and I was hungry - but I was always rebellious and when I got to the police station I was not repentant because I had only shoplifted for food that I needed - I was homeless at the time and needed to eat. This is not an excuse it is the facts.

...................but remember - this was not 2008!!!

This was the early 1970s - young women like me were not rebellious - we did not speak back to police!! Young women in the 60s and 70s did what they were told - but I never did.

I was therefore not considered to be bad - I was considered to be mad!!

I had already had a horrendous time as a child and I was NEVER going to conform to the expectations of that day and how as a woman I SHOULD behave

I was prosecuted and put on 3 years - yes 3 years probation for shoplifting a couple of things from a food store including a small items of food so I could eat!!! and it was considered that due to my rebelliousness that women did not show then that I MUST be mentally ill

So I had to report to a psychiatrist once a month for the duration of my probation!! In the meantime I became scared and consequently really phobic - lets face it I had suffered abuse I was now on probation for nothing and trapped in the home that had lead me there

Anyway I became so phobic I rarely left my room - eventually I was carted off - under the probation order - to Park Prewitt asylum where I was given this dreadful Deep Sleep Therapy

As DST was thought in those days to 'cure ' rebellious' in young people or 'deviants' like me !! For what constituted a deviant, see book Dealing with Deviants: one of the authors Stuart Whiteley was latterly a psychiatrist at the Henderson where I went later and I was part of his study . We were NOT Deviants but young people who had mostly suffered abuse and other difficult childhoods or life experiences - Young people in any situation would NEVER be treated like this now!!!

Great to live as a experimental rat!!!!

I am now 55 and it has taken me most of my life to even accept what happened let along come to terms with it

People ask me now why I stay with a husband who gave me HIV

But compared to the rest of my life before I met him

He is the best thing that EVER happened to me!
Perhaps if you are reading this so far you will perhaps understand why?

Saturday, 27 September 2008

Deep Sleep Treatment

I have been asked what Deep Sleep Treatment or Therapy was/is?

Most of what can be found about it is about what happened re DST in Australia and not in the UK!

It seems to have been completely forgotten that Deep Sleep Treatment was 'invented' in the UK and was continued to be used right up until the early 1980s in UK mental health Hospitals here!!

I was given DST around 1969/70 and within a NHS 'Hospital.

Although the little written about DST in the UK says that here it was done in a 'non -abusive' way and without putting your life at risk as it was administered by 'trained' medical doctors etc I experienced it at the time as HIGHLY abusive, traumatic and it left me with after effects in terms of memory and emotional trauma etc still to this day.

I felt abused then - and I still do now by what happened to me. I may not have died but I was still given:

'massive dosages of a cocktail of barbiturates and tranquilizers that knocked a patient into a 2-week coma'

and I was actually knocked out for nearly 4 weeks not 2! and some of the drugs I was given as I recall would never be given to someone of 17 now, nor in those dosages i.e largactile, Lithium, MAOs, along with at least 5 drugs keep me under a day - and certainly NEVER in combination!!! The side effects and ongoing consequences of any of theses drugs alone in this quantity are now known to be harmful and damaging - yet I was given them all at once!!!!!

But any attempts by me to even get it recognized that DST did happen in the UK has failed ...........that happened to me and while it probably did not put your very life at risk as it did when practiced by incompetent doctors in other parts of the world, it still leaves you with ongoing consequences for the rest of your life - consequences I still suffer! At least in Australia victims of this practice are able to fight back and have joined together and it is recognized what they suffered!

I have been told that there are not even any records that I had this therapy as my hospital records at the time were destroyed when the hospital/asylum I had it in Park Prewit Basingstoke, closed!!!

But in one way I suppose it did me a favor - as after that I then started to fight and NEVER again took any issue life had to throw at me lying down


I was asked the other day why I do what I do?

  • Why if I experience a tragedy or difficult issue in my own life do I then use my own experience to campaign to try to change things for others .
  • Why do I go public with things that others might want to keep to themselves and perhaps be shamed by? i.e Abuse, Mental Illness, Post Natal Illness, now HIV.
  • Why am I angry and proactive about theses issues rather than accepting and just quietly getting on with living and coping with them as most do.

Well this very old and well known poem by Dylan Thomas sums it up for me so well as I guess it has for so many people like me who can not just go quietly are determined to make some sort of difference

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

For some reason my life has never been easy i.e -

Early sexual abuse, then when this abuse, and home circumstances, contributed to my becoming severely phobic to the extent I did not leave my room for nearly a year I was then further abused by the National Health System I trusted to help me, when they gave me Deep Sleep Treatment in a old style mental health asylum when I was only 17 - 18 years old.

Beleve me the mental health hospitals, and the mental health service, around then in the Uk was VERY different form now - The mental Health service was vastly reformed in the 1980s but I was treated with deep Sleep treatment in an old style asylum in the 1960s/70 was barbaric!!

Indeed deep sleep treatment that was later described as 'barbaric' and has been banned in most health services in the world.

My struggle to rehabilitate myself from both my phobic anxiety and the effects of having had this abusive Deep Sleep Treatment without any help as I was too scared to EVER trust the NHS again ( and my success at this ) And then at a time when I thought things were going so well and I had had my one and only child -Post Natal Illness - which I also got through with no help or support or indeed understanding really from anyone.

And now when I should be looking forward to a peaceful retirement with my husband - I find I have HIV!!

All theses events prompted me to act. And to do something constructive with what I had experienced and not to just accept! Acceptance is just not in my vocabulary! Acceptance was abused out of me when I had the sleep treatment!!

I became a teacher/youth worker because of the sexual abuse and the NHS abuse when they gave me that horrendous so called Sleep 'treatment' - and spent many years of my life trying to make a difference for troubled young people. In the hope that I could prevent at least one suffering as I had and to empower young people so they were NEVER as powerless as I had been

I started PNI ORG UK charity because I had had Post Natal Illness: in the hope that I could make a difference to at least one woman and help someone not to suffer and feel so alone as I had

So I now have HIV - not sure exactly where I am going with this yet? - but I WILL be an activist - I will be public and I will at least try to make a difference

So I will never go quietly
I am raging against it and will always rage

Monday, 22 September 2008

What is PozFem?

The PozFem Vision paper can be read here:

You can join PozFem yourself - and it would be lovely if others from the south west did - but also I can take anything you are concerned about or want to say about being woman living with HIV to the meeting.

If you want me to bring something up you can do his anonymously by posting it on here or emailing me and I will bring up what you want to say without mentioning in any way who you are.
Indeed if you write it here as a guest I not using you real name - I will not in fact know who you are myself!

Of course if you are happy to put your name to what you want to say - this is fine too!

PozFem UK is:

'the only national network of women living with HIV. It ewas established during Changing Tomorrow, the UK conference of people living with HIV, held in Leicester in September 2004. PozFem UK works through 20 HIV positive regional coordinators who are linked to regional groups around England, Northern Ireland, Scotland and Wales. The International Community of Women living with HIV/AIDS (ICW) and Positively Women provide technical support to PozFem UK. PozFem UK is an initiative that is funded by The Big Lottery Fund.'

It is a joint project between Positively Women and ICW - International Community of Women Living with HIV and Lottery Funded.

PozFem UK

  • provides a support network particularly to women who are geographically isolated or in prison;
  • keeps women informed of HIV, health and psycho-social issues;
  • sensitises policy makers and service providers to the issues faced by women living with HIV;
  • creates a link between experiences and challenges of women living with HIV, at local, national and global levels.

PozFem is worried about the lack of awareness of HIV in general and Women in particular in the UK
Also lack of understanding of the issues facing women Living with HIV/AIDs in the UK.

'The attention of the British public has
been focused for many years on people
living with HIV in less economically
developed countries, where people
living with HIV commonly experience a
gross lack of access to care, treatment
and support. Whilst this focus is valid
and necessary given the magnitude of
the impact of HIV in these countries, we
are concerned at the lack of
understanding of the issues facing
women living with HIV in the UK.

As PozFem UK members and women
living with HIV in different parts of the
country, we feel it is vital to sound a
number of alarm bells in relation to
sexual health and HIV, and the policies
and strategies which are guiding the
UK’s national response.

If you agree with us, please join or let me have your views and concerns so I can take them to the meeting.

Sunday, 21 September 2008

Poz Fem - Bristol meeting 3rd to 5th October

It is not long now until the PozFem regional coordinators meeting.

And on the one hand I am really looking forward to it - on the other I am really scared!

I am aware that my diagnoses has not been long and that many of the women I will be meeting will have lived with HIV for a long time, and that I am still new to the issues, and in many ways still very ignorant.

Many of the women who will be at this meeting have been activists or involved in support work for some years and many have attended World Aids Conferences - some went to the one this year in Mexico - many others work for organizations such as Positively Women and ICW - International Community of Women living with HIV/AIDs etc.

And I do not work for anyone! I am just someone who was only diagnosed in January and while I did some HIV awareness work as a professional youth worker, this was years ago in the 90s and at a time I did not have HIV myself.

I think I may have been asked to be a PozFem regional coordinator because I am the only woman this far west (Cornwall) who has so far wanted to be involved - there are other South West regional coordinators in Exeter and Bristol I believe who have been involved for some time, but no one until me in Cornwall.

I am really looking forward to meeting theses women who have done so much to raise awareness............

But I think what I am scared of is being attacked or that my contribution is inappropriate or of anyone being angry or disapproving of me. I do have a difficulty with this in group settings anyway as I always expect or worry that I will be attacked and often have been as I am too loud, talk too much, too opinionated etc

I think I am coping surprisingly well with such a recent diagnosis of HIV and have traveled miles so far in trying to understand the issues and what it will mean for me as a person - but I have a long way yet to go.

Ironically perhaps one of the reasons I am coping reasonably well so far is because my life has never been plain sailing, simple or easy and because I have faced many issues before - difficult childhood, abuse, homelessness, drug use as a teenager, mental health, Post Natal Illness, coming to terms with physical disability etc

I think that had I always lived the more peaceful life i.e of wife and mum, married to the same man living in a nice home with a reasonable income that I have lived for the last few years since I recovered from Post Natal Illness, HIV would have been much harder to cope with and more of a shock!

One the one hand I did not ever expect to have HIV myself and I certainly did not expect my husband to have HIV and become so ill ( as he has always been such a fit man I expected him to outlive me easily) but on the other hand HIV is in some ways just another issue and one I have to deal with and use what I have learned in the past from other issues I have faced to deal with it.

But while left to myself I am dealing with it the one thing I have always needed in life is approval, especially for some reason approval from other women. It does not seem to matter to me as much if men do not approve of me, I have my man and as long as he approves and respect me this is enough!!

But approval and especially from women for some reason is a big part of my make up of what I need - and if not approval at least not disapproval. And at times in my working life especially needing this approval has got in the way of my doing a good job for those I represented or was an advocate for.

And I feel particularly vulnerable to disapproval right now, since I found I had HIV - which is why I think I reacted badly to my first consultant as she is female of similar age and intellectual/professional ability I was very/or over sensitive to being misunderstood and judged.

So I know that as long as I am not attacked at the meeting in Bristol I will be OK , but I fear that if I feel - rightly or wrongly - attacked, disapproved of, or judged I will make a fool of myself and cry - something I especially do not want to do at the PozFem meeting.

I want so much to be a productive and fitting representative there of women in Cornwall living with HIV and their needs as well as my own and not be seen as a victim who's diagnosis is too soon for me to do a good job of this.

They say on their website about their consultation document that I distributed in Cornwall:

  • We hope it will serve as a useful advocacy tool for HIV positive women around the UK. We believe it is crucial to ensure that our experiences as HIV positive women inform policy, and we feel strongly that the issues we raise here are important and relevant for a range of policymakers, service providers, voluntary organisations and activists involved in gender equality, sexual health and HIV.

So I have tried to take in everything every woman I have met so far (or spoken to on the phone or on email) in Cornwall living with HIV has said about what is important to them and the issues they face and while I want to represent how it is for me I also understand that how it is for me is not how it is for others and do want to represent them well too.

I do not want to let them or me down!

Saturday, 20 September 2008

Groups I have joined

I am involved in the following:

Welcome to Pozfem UK online - The National Voice of Positive Women

PozFem UK is the only national network of women living with HIV.

It was established during Changing Tomorrow, the UK conference of people living with HIV, held in Leicester in September 2004. PozFem UK works through 20 HIV positive regional coordinators who are linked to regional groups around England, Northern Ireland, Scotland and Wales. The International Community of Women living with HIV/AIDS (ICW) and Positively Women provide technical support to PozFem UK. PozFem UK is an initiative that is funded by The Big Lottery Fund.


I am also off to PozFem's regional meting on the 2rd to the 5th or October in Bristol

And I am really so looking forward to it

I think/hope it will be so very good for me to meet face to face women that are out about their HIV like me and doing their best to campaign for services for women with HIV nationally

I am also a member of ICW - International Community of Women Living with HIV /AIDs

If anyone reading this wants to join me in both

Please do

We can only all try our best to fight for change and educate

If we die without doing this our HIV dies with us - and no one has learnt or achieved anything?!!!

Just my personal perspective

Cornwall Womens group - what I was trying to say

I think what I was trying to say below about the new group
Is I feel such a group is really worth while

But after thinking long and hard I feel if my presence in the group feels too 'risky' due to my going public about my HIV - for other members I am totally happy to withdraw from the group.

I have decided that I intend to say this a the next meeting as it is more important to me that if it is valuable this meeting happens - than I actually attend it.


I acknowledge that we all have to find our own path through living with HIV

And I respect this absolutely and totally.

And know that however well we seem to be coping form the outside - this thing is a nightmare for all of us and a terrible thing to have to live with and through!!

Some of us may need not to tell anyone - and others - such as me for instance - may need to be very public and join activist groups etc

  • I especially understand why those living with HIV who have young children or jobs that they value may feel especially that they need to keep their HIV status totally to themselves!! My daughter may now be 19 but it seems only yesterday that she was a baby !! and I know how much you feel you have to protect them!! So I RESPECT this so totally!!

I also was once a youth worker for Cornwall County Council for 14 years and before this another 12 in London - so I understand why a job may mean that you have the need no to be open about HIV - also I understand why relatives, the estate you live on or the area you live in, community, friends may make you feel you can not be at all open about HIV - and I respect this also.

  • But I also feel that even women who are having to live keeping their HIV status to themselves in Cornwall may benefit from a peer support network where even just for a brief hour or so and in a safe place..............
  • A place where we can all can be open!! a place where no one will judge and a place we can actually air openly our concerns, feelings and distresses - as distress goes hand in hand with HIV for most

But I accept

No one who attended the womans network knows me very well or trusts me at all - or each other as yet! - and trust will take much time.

- and as I have been 'out' about my HIV in the press and on this blog and belong to many HIV organisations in my own name and fully out about it.

I therefore understand that no one knows me and do not trust me and have no knowledge of how I have a long track record of being out about an issue indeed being an advocate for an issue and yet still being able to keep others confidences/confidence on the subject.

I do understand that my having gone public may mean that others may not want to be seen with me - as Cornwall is quite a small community

  • However as I have lived in Cornwall for over 23 years , have relatives in Cornwall and many friends and acquaintances, few if any who have HIV and am often to be seen about in Cornwall in the company of many different people and also with those due to my work with Post Natal Illness as well as relatives friend and others who have NOTHING to do with either issue!!!

So actually even though I have gone public about my HIV, if someone was seen with me there would be no reason at all for anyone who knew either of us to make the assumption that they have HIV or Post natal illness for that matter.

So I do not think that my continuing to be public about my HIV, be involved in activism for HIV rights and issues and yet still attending a local HIV womans group are both not compatible?

But I am willing to withdraw from further meetings if the others would want me to? And at the next meeting I will ask if they do.

As I do no feel I can just creep away into the woodwork now!

The path I have chosen to take for the rest of my life regarding my now being HIV positive is to use my experience to raise awareness, to change attitudes etc if I can.

After all I am not alone in this those who founded such organizations as KPS or even THT, Positively women, Worlds Aids Day, International Community of Women living with HIV etc all must have similar motivations and my ambitions and my motivations are so much tinier than theirs?

- all I want is to help in setting set up specific peer and other support services in Cornwall, and raise awareness within Cornwall of HIV.

Another big reason being is that I have a 19 year old birth daughter and have had a foster children and I want to ensure that at t
hat at the very least they and their friends have the knowledge available to keep them HIV free!!

Cornwall Womens network - First meeting has happend!

The group met and for a first one it was felt to be a good turnout for a first meeting.

We are meeting once a month at the KPS building in Truro and the next meeting is 23rd October 2008 at 11.30 to allow those with children to get back in time to collect them from school.

If anyone else would like to join us you would be very welcome and we would all love to see you.

I considered not mentioning this at all - but I know as I already said that I would be happening that it would seem strange not to even mention it as I have make it very obvious how important it seems to me that we establish a network of women in Cornwall for MUTUAL/peer support.

I have considered it for a few days - since Thursday - and felt that as long as I only talk about in general and how I found it and stuck closely to what we agreed in the meeting


  • 'everything said, within the meeting is confidential to those who were there' and
  • 'no one identifies in any way anyone who was there, to anyone else not present, by mentioning anything personal about others. i.e such as ages, circumstances, lifestyle, family and children'

Then it will be fine for me to just to say that the first meeting has taken place and my feelings now.

As this blog is about me and my journey and not anyone else or any else's journey through HIV.

So as long as I stick to the confidentiality guidelines above and did not in any way identify or bring anyone else into what I feel then this should be fine.


On the whole I felt it was positive - a beginning - and something if we do not try we will never know it will be of benefit.

Most areas of the country do now have at least one HIV Womens support group/network but Cornwall did not have up to now and I so hope that this turns out to be positive to others as well as myself.

I did not try to initiate his just for me at all.

Yes - I certainly did want and need peer support from other women living with HIV, especially when I was first diagnosed. And just assumed that there would be a womens mutual peer support group already set up!! But I found there was nothing and that in fact for at least 3 months after my diagnosis I lived in a vacuum when I did not talk to one other woman with HIV

- this was very painful and upsetting to me because I knew they had to exist in Cornwall but there seemed no way of getting in touch with them.

I would have much rather have just attended an existing group and tried to join in as best I could and give others support as well as receive it - but here was not one and while I certainly did not feel up to being involved in starting one in any way - but I basically felt I had no choice.

As I felt that if I felt so isolated and alone I just could not be the only one feeling like this!! And others may come after me and be diagnosed and find they are alone - so I just want a network to exist if they want to access it too.

I think it may be different if someone was first diagnosed in another part of the country where there were already support groups etc and then chose to move to Cornwall 'post diagnosis' knowing that there was no specific support for women with HIV - or even because HIV is so little recognized here and it was felt to be more anonymous and where no one will know or guess your status.

But I have lived here in Cornwall for well over 20 years have many friends and even relatives here and was diagnosed here and felt I needed local, specifically womens HIV peer support.

I do really think it is still possible to live in Cornwall as a woman with HIV and yet unless you want them to, that no one in your local community ever knows this and yet still come to this new womens network meetings at the KPS building?

Which after all is in an anonymous 'safe' building and nothing need go outside the room we have for any womans network meeting.

Anyway as to the meeting.

I felt the turn out was positive for a first meeting and that it is a start. Irene - KPS - counselor seemed to agree.

And some others gave their apologies and said they will try to come in the future.
The meeting went well in that we certainly had a lot to talk about which is a first step!!

If we had all sat around bored with nothing to say to each other - there truly would be no point whatsoever !!!!! -
But it was not like that.

If nothing else we have a lot of views to exchange - and that can only be good?

Thursday, 11 September 2008

Cornwall Women's HIV Network - first meeting

I wanted to let anyone know who is interested

That the first meeting of the proposed Cornwall Women's HIV Network is next Thursday 18th September at 1.30 at the KPS Resource center in Truro, Cornwall.

If you do not know where that is and want to come to the meeting just email me for the address on

I do hope some of you from Cornwall will come?

I am worried that you may not as I have had some feedback that some women living with HIV in Cornwall may not come along because they are not altogether happy with me!

i.e They are worried about how open I have been about my HIV status and that if they were seen with me 'out and about' in Cornwall, as I have gone public i.e in the newspaper and in a magazine......That this would in essence 'out' them too .

I truly understand as much as is possible to understand another situation and I also understand what a small community Cornwall is. Everyone knows everyone else and it is pretty impossible o keep things secret. If it gets known - everyone knows!!!

Perhaps had I had the opportunity to speak to women in Cornwall Living with HIV I may not have gone so public with my own story and may have understood and taken on board the views and concerns of other women in the county living with HIV?

But unfortunately when I was diagnosed in January I was absolutely desperate to make contact with other women living with HIV who lived in Cornwall. But I was not able to speak face to face to any other woman living with HIV in this county or anywhere for at least 3 months and to his day I have only spoken face to face with three other women

  • One woman I met briefly at a meeting
  • One woman who does not live in Cornwall but at least 100 miles away but who very kindly visited me and had dinner with us ( thank you your visit really helped us both - Barry and me)
  • Lesley who is helping to initiate this women's network with me

However I only met all three some weeks and in some cases many months after I had discovered I had HIV and sometime after I had already gone to the press/media with my story ( they published it some time later not at the time.

So I do understand theses concerns BUT I really beleve that it is possible for women living with HIV in Cornwall to join the network and it not compromise their anonymity despite my going to he press - I am not important I am only one woman.

So I can only apologize if my going to the media has made anyone feel they can not attend the women's network at KPS. If it was not the right thing to do I am truly sorry but it is too late to change it now

However what I want to say is:

  • The Women's KPS network is not being facilitated by me but by the KPS counselor Irene Alford
  • I may have initiated this network to start because I needed peer support with other women in the county living with HIV and when I looked for it I found it just was not there - but - My status in the group/network is only one of participant just like everyone else
  • If anyone does not want to be seen with me in particular or to relate to me in any way in the future I respect this - and you need not - What I am hoping is enough women will come along so you all have a choice as to who you contact and who you relate to among women living with HIV in Cornwall.
  • Obviously just because we all have HIV we are not all going to get along we are vastly different age groups and life styles etc - So the reason for calling this a HIV Women's network and not a HIV Women's Group is so you can all choose who you contact or spend time with , if you contact or spend time with anyone at all?

Please consider giving it a go and come along on Thursday 18th September 2008

If we do not try - we will never know if it will be helpful to us

Veritee XX

Saturday, 16 August 2008

The irony of life - Cornwall Women of Achievement Awards 2006

I have not written on here for a while............... just trying to enjoy my summer as best I can and try to come to terms with my status as a HIV positive older woman, a situation that will now last he rest of my life!

But I thought someone may appreciate the irony of this.....

That I was shortlisted for the Cornwall Women of Achievement Awards 2006 for my youth work and my charity work and I have only just realized that one of the other two shortlisted for the same category as me was my consultant Frances Keane - the head HIV consultant in Cornwall!!

I wonder now if she realized?

The official website listing the finalists for the Cornwall Women of Achievement Awards 2006 for my category has been taken down now but here is one where it is mentioned I was a shortlisted for my voluntary and youth work endeavors.

If you scroll down you will find that my category is listed and I am shortlisted with one other along with my first HIV consultant, Frances Keane, who is the head consultant of the GU clinic where we both ( my husband and I ) now get treated and while I now tend to see one of the other consultants, she was the first one I saw and the one I saw when first diagnosed in January and when VERY upset and is still my husbands HIV consultant.

Community and public service sponsored by Cornwall County Council

Francis Keane, Consultant at the Department of GU Medicine, RCHT
Nancy Morris, Child & Family Centre, Bodmin (formerly Sure Start).
Veritee Reed Hall

I find this fact so very ironic especially as the reason I did not get to the award ceremony that night and therefore had no chance of winning even though I had been told beforehand that it was likely, was that I had at that time been suffering bouts of crippling unexplained sickness and diarrhea and tiredness and was just too ill that evening of the presentations to go - and in retrospect I believe this illness to be due to my HIV that I had indeed been suffering by then for some years from HIV that I did not at that point know I had!!!!!!!!!!!!!!!!!!!!!!!!

So perhaps it is fate - and a good thing - that Frances Keane and myself did not meet that night before my diagnosis? As had we met at the Achievement Cornwall Women of Achievement Awards 2006 - it would truly be more embarrassing than I already found it.

Frances Keane won the award for that category............and all I got was HIV!!!!! and all that goes with it!!!!!!!!!!!!!

Life it truly ironic sometimes

Sunday, 15 June 2008

Sunday People today - 15th June 2008

God it was in!!
And our picture made the front page!!!!!!!

We did not expect that!!

It does not give the story as it appears in full in the paper - or maybe it is because it does not have the pictures or quotes that it seems less extensive?

As I just said to someone on email.........................

It is fathers day today and we were going out - but Barry will not go out now!! He is in hiding!!

He was, of course, part of it going into the papers, and was happy to contribute all along but he did just not expect it to go on the front page - neither did I

So he refuses to go out with me today as planned - Oh well!!! There is always another day!

As he hates being photographed so it was this that has got to him, not the story itself as he was happy to do it as he wanted to warn other men that it really is not worth that 'one night stand 'however tempting it may seem at the time.

I still find him really attractive - despite him not being well - so I just can not understand that he hates the picture ? But.........

  • He thinks he looks awful in the picture

  • I think I look awful in the picture

  • But we both think the other looks great!!

  • Shows what love can do as neither of us looks great- but we both think each other look fantastic!!

  • But in reality we do not - well certainly not as good as we used to look when young anyway!!!!!

  • But we still look wonderful to each other!!

  • And that is really all that counts in the end

He wanted to do the story as much as I

Because he learnt a really hard lesson at an age that he really thought he had no other lessons to learn -and I did too as I should have not taken it for granted that he had never had any other sexual partners in all theses years!!!

Well that's the point as he sees it- if he can do it at his age, and after so many years of what truly is a very happy marriage, others can too!!!

But thank you so much for your support on this
I wish it had never happened - but then I also wish PNI had never happened

- life has so many twists and turns doesn't it?

Our Story - Sunday People 15/June 2008

This may be a bit late - but I only heard myself today/ this morning that 'Our HIV Story' was actually going to be published today

I wanted to let you know ( you may not be interested in what such an in-consequential person such as me is doing to raise awareness of issues around HIV/AIDs but I just wanted you to know)

  • That I have now began my own 'personal campaign' to raise awareness of HIV and its prevention amongst the UK public
  • To this end and as a beginning - My/Our story is published today in the UK Sunday People 15/June 2008

I have made sure that the KPS charity is mentioned:

Perhaps a less mainstream newspaper than I had hoped - but working class as we are and as a non- celebrity it was the only one I could get in nationally - and I have done my best to make the necessary points - for me about:

  • routine HIV testing in the UK
  • that older people, over 40 are now very much a risk group for HIV in the UK i.e divorce, changing partners due to death of a partner or moving on after several years etc
  • more awareness of the realities of HIV ( I am a qualified youth worker and many young people I have spoken to in the UK think HIV is now curable!!!!)
  • safer sex,
  • that non consecutive - i.e serial rather than several together - partners is the best way in terms of not getting or passing on HIV,
  • telling your partners so they understand the risk and can protect themselves ( controversial I know)
  • that the support offered in the UK should be improved - the access to medication is great but the access to support especially if you are heterosexual is shit.
  • education in the UK improved - for a 'first world' country like the UK popular knowledge of HIV is appalling. Because most thing it will never affect them!!

Sorry I am VERY opinionated!! And my 'opinions' many not be the same as others or well thought out as yet

But it is early days for me and I have to do this my own way

Friday, 13 June 2008

Wisdom of Whores

I have written, via the Internet, to a woman who wrote the book - Wisdom of Whores - Elizabeth Pisani

She once did me the honor of talking to me briefly on Skype -

I felt I was bloody honored!!!!!!!!

So if you ever read this - Thank you Elizabeth

- I should not have asked you to give me your time as it was my stuff and I know how busy you are so I really appreciated that you too the time you did I remember I just talked and did not give you the chance to respond much?

  • On the one hand I love her for her book!
  • On the other I hate her for her book!

I think the essence of my discomfort reading her book is it makes me feel that I - and everyone else - am responsible for my own infection! which had I been I would gladly take responsibility for

i.e had any real chance or avoiding it through having the information from my husband that he had had sex with another woman at some point in our marriage............................

or I had had risky behaviour for HIV myself

i.e either of us had not used safe sex, except with your partner of over 20 years and then only when you were trying to conceive and after menopause, not had any consecutive partners, you are NOT a sex worker and nor are you an intravenous drug user.

So the book makes me feel guilty and blamed - yet what could I have done to avoid my HIV infection? ( if I do not have the right information, from my husband in this case, this is impossible)

My personal projection is I am guessing she is a lot younger than I am?

Sorry my ageist crap I guess????

..............and yet her book is so wonderfully full of great stuff/insights/information/knowledge and and so right in ways - as I was once about my own subjects!!! And she still has the energy to try to disseminate her knowledge? I envy her energy.

But at the same time her experience of the issue is second hand as a professional - just as mine was ...............................

This does not mean she does not know her subject - as she does entirely
BUT it is all so totally different when you actually HAVE HIV!!!

My comment to her on her blog - I changed it a bit to post on her blog :
She said:

Please come along to agree, disagree, make me think, change my mind, or entrench me in my opinions. Or even just to hear some cracking good tales about interesting people.

I said:

We have been in contact briefly before - On Skype - maybe I should not have tried to talk to you as it was all my stuff ?

And I so wish I COULD have a chance to be there and argue with you face to face!! As while I agree with so much you say I also do have some real difficulties with it too. So I wish I could make it to the US but I can not.

I am now a volunteer for a HIV charity in the UK and in my ‘very small’ way I am campaigning for more awareness, routine HIV testing etc
I am such small fry compared to you - but I so hope to make some impact!!

I may be in the Sunday People UK this Sunday- I have a blog here:

I do in fact have a cracking good life story - that I think you may well enjoy….and I can at times be VERY interesting!!!!!!!!

But then so do you and so are you and you do not have HIV!!!

Lucky for you!!!!!!!!!! and every one else who does not have it but works with it!!!!!!!!

But I feel I HAVE to point out - It is actually really so VERY different when you do have HIV yourself!!!

Something I do truly so hope you never discover - i.e how different it is to have HIV from the mostly academic perspective of working with people with HIV you now have.

I am now unfortunate to have done both!!!
I have worked with people with HIV - not at all as extensively as you, and me only from a caring/personal/educative perspective - but I now have HIV at an age I thought it could NEVER happen to me!!!!!

- please believe me it is VERY different when you have it yourself!! As I have been so very unfortunate to discover

Anyway I rant.............................

I am VERY good at ranting since I have HIV - HIV can make you rant - bloody virus has no care about who you are or how much you know about HIV, You only have to make one mistake or have sex with someone who did and you are .....................................totally fucked!!!!

I did however love and hate your book
it made many points that needed to be said

And someone brave enough to say it!!

Thanks for talking to me - Skype - and I wish I could meet you


Wednesday, 11 June 2008

Off to the clinic today

Well I am off now to my monthly visit to see the HIV consultant I will let you know how it goes later

But I just hate I hate going to that clinic . I just always get so angry that my treatment is done in a STD/GU clinic!!

My daughter says this is my problem because even though I feel I did not take any sexual risks to get HIV, it is transmitted sexually??

But I just can not accept that with a lifelong illness that has affected everything in my life and may eventually kill me ......................( HIV meds only 'delay' AIDs not prevent it. You may be lucky and it delays it for many years but you can never be sure!!)

....................that I have to turn up a STD clinic at least once a month -although it will get less as time progresses, unless/or when I am ill

...............................and sit sometimes with giggly 'mostly' quite young girls who cope with having picked up an STI/STD by making a joke of it

  • or worst still grumpy 'mostly' young men with itchy or drippy pricks, who are obviously feeling, if they are heterosexual that if they had not had sex with that Slag, Slut whatever I have heard it all from young men.................................. they would not be there i.e blaming the woman as always I can see it on their faces and also on their faces what is that old woman doing here - dirty old person, people my age ( their parents age ) do not have sex !! And if they do then they must be a sex worker to have to be in a STD clinic at my age ( 55)

I know this is my stuff - and could be just my assumptions and not so at all - but my stuff is my stuff and this is how I feel because I have to get treatment for HIV in a sub standard STD clinic !!!!!
And I am not certain it is only just my stuff at all??

After all I was a youth worker working professionally with the age group of the majority of people , men and women, that are at that clinic when I go....................

And believe me I have had to direct both young women and young men to STD clinics as a youth worker and what I have said above was the main attitude .......girls made a joke of it and often brought a couple of friends for support and sat and giggled their way through the consultation ( or in fact me sometimes as their youth worker)

The young women I do not really mind sitting with them and not all of coruse treat it as a joke. Some look very upset and I just then wish I could go to them and try to support them through it

but I can see on their faces sometimes a question about what an old woman like me is doing there!! But on the whole I am OK with sitting in the waiting room when it is only women.

In fact I just wish I was there for an STD and not HIV!!!!The STD woud be cured after a course of antibiotics

- but I still do not think an STD clinic is where people with HIV should be going for their treatment, and I especialy do not like that if you have an STD your clinic time as a woman is seperate so you never attend with men - but if you have HIV you can often find yourself as a woman in a waiting room of men with STDs or visa versa
  • but the lads!!

    Their attitudes when I was a youth worker were always so basically this I mean the attitudes of heterosexual young men - the gay young men were great!!.

    But if heterosexual young men got an STD it was almost always seen as the woman's fault for being a slut and picking it up - never theirs for not using a condom etc

    And believe me I have worked with hundreds of young men as a youth worker on issues around sexuality

    So while I can just about cope when my appointment with the GU clinic coincides with the woman's STD clinic

    I bloody hate it when I am seen as a HIV patient when the mens STD clinic is going on - I know the attitudes of younger ( and often older) men towards STD only too well!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

An appointment at that clinic always does this to me - makes me rave!!!

People living with HIV need somewhere else for just HIV people to go to for treatment other than a STD clinic, or if they do have to go to a STD clinic the HIV clinic should have its own slot

or if soemone with HIV does not want to be recognised/identified as HIV ( I do personalty not care about this ) then HIV people just have appointments all thought the day at a time that suits them , not the doctor, and hopefully that they do not have to wait in the waiting room with anyone if they do not want to i.e a seperate room to wait in !!!

And not have to attend a HIV clinic that is tagged onto a STD clinic that only is available once or at most twice a week and on a certain day!!

Sorry just having an offload about the clinic usual


Friday, 6 June 2008

Sunday Mirror have not run my story

The Sunday Mirror have not run my story and are not interested in it for the daily Mirror- only the Sunday Mirror

And articles in the Sunday Mirror are undeniably more 'salacious ' in content

I am told they still may - but only I guess if there is no celeb or other more 'interesting' news that week

And I feel that their interest is only because HIV is a sexually transmitted Illness for most in the UK - and that is why they only will run it if they do in the Sunday Mirror as they prefer stories in there, where your sexual habits have caused the situation?

Yet I can count on my hands the amounts of times I have had sex in many years and then only with my husband.

Yet they ran a story in the Daily Mirror the other day of a woman who uses our Post Natal Illness support forum .

Hats off to her for getting it published

But her story is not very different from mine and many others when we/I had Post Natal Illness

-In fact it could have been my story except I attacked my husband and not my mother and he was too confused to tell anyone

And I NEVER received any treatment for PNI as because I was too scared to tell anyone at the time about my hallucinations and the plans to kill my daughter with knives - I did not get any medical treatment, and my husband was at sea, so I had to see the whole thing though alone.

Some of my experiences I have with PNI I have written here:

I too, saw my baby as evil, had thoughts or hallucinations that she was somehow deformed and evil and had thoughts that I would kill her with knives!! And over the years on the PNI ORG UK web site I have listened and supported so many women with the same thoughts and experiences.

I did not get any help because PNI was so little understood then and if you were not actually depressed and had not yet committed a voilent act that was known about - they thought you were not ill - and I was not depressed but manic !! And far too scared to tell anyone of my hallucinations and thoughts - so I battled through it entirely on my own - and many women still do!!!!

  • The media seems to think her story is rare
  • But unfortunately for many her story is NOT the exception - her story is the rule for a lot of women I speak to with PNI

I had the same kinds of experiences and I hear it almost every day while running the charity I founded!!! see our support forum:

Many do not write the total details of their thoughts and experiences on the forum but email it to me privately - I hear stories like this all the time!!

I am not trying to minimise hers, others or my experience of Post Natal Illness - it is truly horrendous !! And hats off for her for getting the publicity

But the ignorance of the media, the medical profession and general public that they still think her experience is unusual for many hundreds or even thousands of women who suffer PNI appalls me !!!!!

And does not make my trust that the Media EVER get anything right!!!!

I also feel that a story about PNI has been published more easily than the message I want to get out about HIV as the person with it can be seen as an and innocent victim who did nothing to get or cause PNI

And of course this is true - but are not we with HIV in the same position??

What have those with HIV done beyond what thousands of people do every day -

i.e sex without a condom!!!!!!

And I have had both PNI and now HIV

It is all idiotic to me - the attitudes of the media!!

As doesn't PNI ultimately have a sexual cause originally too ? That is if you apply the logic of the Media!!!!

i.e we would not have babies or thus PNI if we did not have sex!!!

I am a bit angry - as what is the bloody difference

If we do not have sex - and sex unprotected by condoms - we can not get HIV or PNI or in fact cervical cancer !!!!

I am mad right now - as unfortunately for me I have now had both!! And my sexual 'habits' are really so ordinary and in fact only with my husband

Bloody media!!!!

I am so happy that her story was published - but why not my HIV story too?and why is mine only thought to be suitable for the Sunday Mirror!!!

Saturday, 31 May 2008

But is there any Point???

I think I have just been taught a lesson in the possible futility of telling everyone your situation in order to educate and hope that those you love do not end up with this thing like you....

Someone I am very close to and knows our situation and that I am trying to have a story published in the papers and why ..........................

Rang up to say she had a few drinks and is not sure whether she had protected sex with someone she does not know too well

- she thinks she did but can not be sure but took a 'morning after' pill just in case to avoid pregnancy.

I said what about an HIV test ??- obviously not for a week or two as with HIV it will not show up until you sero -convert - but its best to have one in a while to be sure. She said that she can't have an HIV test every time she just may have made a mistake!!

I agreed it seemed a bit much to do this!!!!! but afterwards I realised that if anyone is concerned enough to take a pill to avoid pregnancy every time they may have made a mistake, even if not totally sure you did make that mistake ..........................then I guess I feel they, and everyone in that position should be having an HIV and STD test too!!

It does not make sense really to protect yourself against pregnancy but not to make sure you have not picked up any STDs including HIV!! This is exactly why I tell people I love - and even those I do not even know very well - so they will get an HIV test and EVERY time they make a mistake - or even are not sure if they made that mistake - and of course not ever make mistakes. As if she did have an STD or HIV the sooner you know the better.

But if it does not work with someone I am close to and knows my situation well and is so upset for me that I have HIV - how is it going to work with those I do not even know??

Maybe I am going to have to rethink?

The Press - What do I want to say??? If only they would listen!!!!

I wrote this below about what I wanted to say to the Media if I can get in any !!

Points I want to make Re HIV in General - Notes –
Monday, 26 May 2008

1./The necessity for routine testing:

If you are ill in the UK and go to your GP ......................... you may get some tests

If you go with perhaps:

  • severe flue like symptoms, high temperature nausea, diarrhoea and a rash ( which many get when they sero-convert i.e become HIV positive up to a month 8 weeks after initial infection with HIV) or on going symptoms of extreme fatigue, nausea, diarrhoea, rapid weight loss or gain, swollen glands, ( psoriasis is very common for those with HIV, plus unexplained rashes and very dry skin ) constant infections, memory loss, eye problems, thrush, cystitis, breathing problems, heart pain, skin problems etc

(all can be part of living with HIV if you are untreated, I had both a severe seroconversion illness and then many of those ongoing symptoms but was often ignored by my doctor and when I was given any tests it was NEVER an HIV test, as you have to request this specifically and it never occured to me or my GP - yet I have been HIV + for some years!!)

You will however quite often get as a first line of investigation tests that may include tests for:

  • diabetes, thyroid, cholesterol – under or overactive, anaemia, electrolytes, in older men tests for prostrate cancer or enlargement, a chest x ray for breathing problems, women may have a cervical smear and or a mammogram, cystitis, blood tests for blood counts and an any number of other tests depending on your symptoms.

My husband had most of theses, except the ones for women's bits – and I have also had many of them over the last year or two but nothing showed up to explain why we both did not feel well!!

The one test YOU DO NOT GET UNLESS YOU ASK FOR IT IS A HIV TEST??? And HIV DOES NOT show up on any of theses other tests!!!

There used to be some reasons why you may not want to test people without them asking for a test and have to tell people they had HIV without them actively wanting to know –

  • As there was no real help for those with HIV and everyone without treatment was likely to/would eventually get AIDs and die -and knowing you had HIV, before there was effective meds to keep AIDs at bay, would not then change the outcome - but it could have prevented you infecting others!!
  • There was also the fact that HIV was seen as being something only people in high risk groups got and therefore only those who took sexual risks i.e gay men, those who had anal intercourse, multi consecutive partners, not using safer sex, changing partners frequently, or used drugs would get .
  • So for a doctor to suggest a test to someone who did not feel they had taken a risk themselves for HIV, was seen as a doctor over stepping a persons privacy and perhaps undermining their reputation.

But theses days we could all be at risk - and in the UK, when HIV Antiretrovirals are available that will keep you as healthy as possible with HIV there is no rational I can think of for not doing routine testing – except perhaps the stigma?

As if you have HIV – you are actually more likely to get all of theses health problems anyway i.e. thyroid, diabetes, heart/artery problems, abnormal cholesterol, and cancers of many kinds happen more often to even treated HIV people - so the more medical care you get and as early as possible, the better!!

With medication you have some chance of avoiding the worst of them and living out the rest of your natural lifespan, and has healthily as possible without too many of the complications of HIV such as the cancers, eye problems, brain damage, opportunistic infections that HIV people do get even before they have full blown AIDs

Without HIV medication you will still now eventually progress to AIDs and you will die!! There is still no other end to untreated HIV!! So it makes real sense to get a test and know as soon as possible?

I actually suspect that without routine testing people may well be dying of HIV as a primary cause but on their death certificate will go things like pneumonia, heart disease, artery disease, cancers, as the cause of death. But the reason they had theses illnesses was because they had HIV – because they were not tested for this would be a fact that not even their doctors knew

2./Telling our Story

I hope that telling our story will be told in the way that would be of any use to us in trying to help others avoid our situation, or to open the debate about changing HIV testing in this country, reducing stigma and 'educating' ordinary heterosexual couples and married people that this IS an issue for them to be thinking about.

3./At least a 3rd statistically who have HIV in the UK do not know they have HIV!!!

And theses are the ‘official’ statistics so you can be sure the number is probably higher.

Older heterosexual people- over 40 - are now statistically more at risk of STDs in general and probably HIV

When those of us over 40 they learned about STDs the risks were fewer and HIV did not exist, or was rare in the heterosexual community. Taking precautions against HIV is therefore NOT second nature to the 40 and above generation of heterosexuals

Many older heterosexual people are sexually again active and changing partners in their 40s upwards – maybe due to a death of their long term partner, divorce or perhaps simply boredom or wanting to have other relationships after so long with one person.

But in my opinion they may not consider it necessary to request an HIV test. We did not either!!

And I used to work as a youth worker running HIV awareness events for heterosexual young people and even I did not consider it until my husband was so ill I felt nothing else could explain his symptoms

My husband nearly died because there is no routine testing for HIV and currently in the UK you have to ask for a test.

That you can in fact be very ill with HIV and unless you request a test you may never know you have HIV? And that some may even be dying of this as on their death certificates, i.e death may be attributed to secondary infections like pneumonia or the range of cancers untreated HIV people are particularly prone to and not HIV!

We did not suspect we had HIV so we did not ask so my husband got AIDs.

If we had known and got the HIV medication early enough with modern medication you may never develop AIDs. But without HIV medication everyone with HIV develops AIDs eventually and without treatment dies. If you get treatment late and not within the first few years of infection, your life expectation will be compromised and your quality of life, as I believe my husbands has been and to a lesser extent my own!!!

I want to tell the story because I wanted to make the point to the public and hopefully to the medical profession that routine testing was not done and should be and this should be something that is put onto the public agenda and started to be considered!!!

And that many people may not know they are HIV positive until their health is badly compromised and that especially older and heterosexual people may not know what risks they are taking and some may die without knowing they have HIV - people who could have still lived a long and fairly healthy life even with HIV.

4./Cervical cancer is sexually transmitted disease that carries no stigma? Why is HIV so differently treated by both the public and the medical profession?

What is the logic of HIV being treated differently even by the medical profession with stigma and other factors meaning there is not routine testing

When other sexually transmitted illnesses such as cervical cancer have been tested for many years routinely – via a smear test at your local GP surgery?

Cervical Cancer has long been known to be mostly sexually transmitted by a virus and they have now identified the virus that causes it

It is HVP

As the main type of cervical cancer suffered in the western world is now known to be caused by HPV the virus that causes genital warts in some.

Medics are so sure about this they are rolling out a programme this year to get all young girls of 11, before they are sexually active, immunised against the HPV virus. So that this next generation of women will not have the risk of cervical cancer that previous generations did.

HIV can not be immunised against but it can be routine tested for and detected early

And as far as transmission is concerned this will prevent it being transmitted as often.

As an HIV person on HIV medication is often considered to be ‘virus undetectable’ which means there can be little of no virus in their mucous fluids and therefore they are very unlikely to be able to pass it on, even with unprotected/ unsafe sex!!

A really good reason to detect all with HIV and treat us all as soon as possible!!!

5./Women’s HIV Network in Cornwall

I started this because as a women with HIV I was not able to talk to a single woman with HIV when I was first diagnosed – KPS Kernow Positive Support is doing a wonderful job in trying to support people with HIV but they understand that women with HIV find it harder to come forward than men of all sexual orientation – many have jobs , many have children in primary and secondary school – and therefore women with HIV are the most unsupported group.

Many groups exist for men up and down the country but only one for women – Positive Women – in London
But if you live in Cornwall accessing their services except by phone and email is impossible.

Therefore KPS are trying to look for funding to start this woman and peer support network.
It is badly needed especially when you are fist diagnosed. I wanted desperately to speak to another woman with HIV when I was first diagnosed but just could not find anyone I could speak to even on the phone.

I have spoken now to a few and met a couple face to face thought trying to start this network and hope this will expand in the future.

If nothing else I hope it will be their for women when they are fist diagnosed and that we can do some education in raising awareness amongst women – especially older women - about HIV.

6./Should HIV be treated in a GU clinic?

It is not treated in GU clinics in every part of the UK, but it is in Cornwall. If you can travel to bigger towns Plymouth, Exeter, Bristol, London you may be treated elsewhere in more appropriate surroundings and with complimentary medicine and therapies and counselling offered as routine but the clinic itself.

It is not in Cornwall. KPS does offer counselling etc but not the NHS GU Clinic!!! If you can afford to go privately you may get this but not if you can not.

I personally think this is so very inappropriate. So do most people living with HIV - Why?

  • All other sexually transmitted diseases are curable or at the least not life threatening theses days.
  • HIV is life threatening and affects your whole life and your whole body
  • HIV does not affect the genitals at all in most people
  • The only similarity to other STDs is it is transmitted often sexually


  1. Most other people with other STDs will only go to a GU clinic for a week or two – if you have HIV you will be going there for the rest of your life !!
  2. The facilities offered in a GU clinic are not suitable for people with a life threatening and lifetime illness for which they will have to be on medication for the rest of their lives
  3. I, and others with HIV, could be still sitting in that GU waiting room regularly at 80 years old – this is not appropriate.
  4. And it is medication that can often have both short and long term side effects which can also be life changing or life threatening
  5. Prescribing for people with HIV and looking after people living with HIV- both HIV meds and other medications for other conditions we can get - is a very specialised branch of medicine . It should not be done in any 'general' clinic!!

In Cornwall I would like to see something like the Mermaid centre for people with HIV

I know this is may be impossible but I can have hopes and this to aim for.