Saturday, 27 November 2010

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

Thursday, 7 October 2010

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?

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.
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 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 !!!

    Friday, 10 September 2010

    HIV+ Women are Evil Criminals

     *draft post - will firm it up when I have time
    For my sins I use Twitter. And increasingly I find I am twittering/tweeting back to those who seem to think that anyone with HIV, especially women with HIV, are criminals and deserve to suffer and be punished for having HIV?

    • And that it is often seen as  fair game online and in Twitter  to treat any women even remotely suspected of being HIV ...... as potential trash!
    • (and that all those who sadly do  have HIV as proven trash )
    • That outing their HIV Poz status - or anyone HIV+ - even when it may or may not be so -  is totally  fine?
    • And that it is anyone's business to disclose another's HIV status??

    And if a that a woman is famous in some way then it is always totally fine to expose their perceived status on Twitter or anywhere online  - even if you are totally wrong and they do not in fact have HIV!

    And that it is totally fine to regard all  women HIV Positive as evil?

    So often in Twitter, and elsewhere online, we are called whores, hoe's etc 
    ( in America the very horrible word they seem to use for this is Hoe's !!) 

    Often we with HIVare portrayed as potential murderers and basically criminals!
    I was asked by a friend why this may be so as she said........

    'Why do people hate people with HIV? They should be showing compassion not hatred. I don't get it?'

    A very big and very valid question - as I have HIV and do not get it either or at all!

    And since the very first day of my diagnosis I was made aware of this attitude. Even though my diagnosis was so very 'out of the blue' and so very unexpected, I have been confronted with this attitude right from the very start and have been trying to get my head round it ever since diagnosed HIV+. 

    So to avoid re- inventing the wheel below are some of my thoughts so far on this I wrote back to her.
    This is a very big and complicated question. 

    One that I am exploring and have no firm answers as yet. But I do know that this attitude exists and big time and worldwide.

    Increasingly  there are those in my very short experience, that are very angry with all those that live with HIV. It is is in my opinion driven by personal fear  - of HIV - Why?
    To be fair the prospect of getting HIV is so VERY scary! And rightly so! As basiclaly it is scary and a terrible thing to have to face.

    More than even those that know us  that do have HIV really seem to understand .
    But we did not want it either - blame does not have a space here ?

    Sex and Death

    My view is that sex and illness taps in to humanities deepest needs coupled with our most profound fears?

    So sex linked with illness and possible death is a so VERY powerful of combination's
    Maybe one of the most powerful combination humans and most species on this earth can face?

    So HIV being mainly? sexually transmitted,  so neatly combines the two?  Just my very humble opinion!
    • Sex being one of the hugest of  human drives ( drives of any social species is based on the drives to have intimacy and to to reproduce) so HIV or can be also linked to many's biggest fears and - at times - phobias.
    • Sex is a very basic drives of all human motivations - therefore sex linked with a a potentially fatal illness is the biggest driver of irrational fear, phobia, attitudes you will ever care to find.
    But that this combination has may have led to the current increasing, ground led, 'movement' to criminalize those with HIV - to regard them - all with HIV -  as potential criminals - is so very shocking to me.
    Don't people think for themselves - have their own opinions?

    I have been told, in person, by many African women and corresponded about this on the web ( but I have never been there but have to accept what they say That this appalling attitude has existed in places in Africa for some years since, basically since HIV was understood there as to be a i.e STI, sexually transmitted?

    And at first mostly a view in  African and a few other communities worldwide where HIV among heterosexual people was more prevalent -
    and also there was concurrently a  fear - worldwide sadly -  of gay men as an HIV risk to all i.e heterosexuals i.e if they crossed 'boundaries' and had sex with those who were not predominantly gay?  But this was not as much seen as a fear to the heterosexual community in the beginning ? For many years in US.UK, Europe etc  HIV was seen as only a gay issue or the problem of those who used intravenous drugs, sex workers etc

    •   But then, from my research into this ( sure I may not come over as particularly educated but believe me I am and I have researched this extensively!!)
     The view that hetero people with HIV are a threat and deserve to be criminalized and women marginally more than men, started to change. It seems it was always a view of some but as HIV became not ' just' something that most thought only to exist in Africa among hetero people and in gays or drug users otherwise this view started to change.

    This view is now  more widespread and gained credibility.

    Often at first, it seems to me  from my research to be mostly a view only a spoken attitude among heterosexual black Americans mostly towards women that may - or in fact may not have had have  - HIV. 

    But from what I can see it has now spread worldwide. 
    It is even  happening here in the UK among black & white heterosexuals and everywhere in the world now.

    I started first to hear of this attitude  almost straight away when I was first diagnosed and even from those down here in my very rural area. 

    When first diagnosed i went to online groups to learn ow it was to live with HIV and to cop.e

    To start with I was asked a few times both locally and online why did I not take Barry to court for giving me HIV - the logic was even while he may not have known he was HIV he was a seaman & did know he had been unfaithful and did not tell me i.e for grievous bodily harm.

    Then I met someone a white male at my local HIV charity who was in the process of taking the partner to court who he got HIV from even though she did not know she had it ( he also used language like whore, evil, dangerous, murderer etc towards her too )

    Then I started to hear from women through Poz peoples forums worldwide who had been verbally or physically abused for trying to negotiate safer sex because they were HIV positive - and this was before they even had sex with that person , they were just trying to be honest and tell them first.

    Then I heard from others who their partner had blamed them and been verbally and sometimes physically abusive when they found out they both had HIV.

    Yet some of them told me - that like me - they have never been unfaithful - others told me that they had but their partners had too?? others that they did not knwo they were HIV positive, others that they have no idea who became HIV positive first ( and of course what does this matter anyway??)

     But whatever the situation their male partners blamed them and at times beat them up!!

    But of course I do not care who got HIV first - that is not the point?
    Everyone with HIV got HIV from someone? Someone who equally does not want it, there is no room for blame for me in the fight against HIV.

    At first I thought this was a minority opinion but sadly then gradually I realized how widespread this attitude is, and vowed to try to do my best to combat this very dangerous development toward attitudes to those with HIV

    My View



    I have tragically met several of those online i.e forums, FaceBook etc who tried to prosecute their partners for 'giving' them HIV. A hiding to absolutely nowhere except their own trauma and grief in my opinion.

    One his partner of many years even though he had no proof she knew of her infection, and she was infected by someone else before she met him

    So while this attitude does seem to have started at 'ground level 'it is increasingly affecting laws and policy higher up and this has led to an increasing number of prosecutions or attempted prosecutions world wide for passing or attempting to pass HIV on.
    Those with this attitude regard those with HIV+ -even if it is their long term partner who they said before HIV they loved - as a risk, dangerous and dirty, even evil.

    Often it is sadly for me as a lifelong feminist - women that are most regarded like this, men more often seen as victims by both genders and women with HIV as 'whores'.

    You would have though, from what I have said,  that it would be mostly men with this attitude? and men who do not feel it is their responsibility to protect themselves and use condoms etc?
    But in fact - more worryingly to me -  many with this attitude towards women with HIV, are women!? more are women in fact.

    The fear that drives this attitude in women  seems to be the fear that 'their' men may have sex with another come and back to them and infect them. 

    And that they the attitude in this is to seem to regard all women with HIV as predatory sexually?

    Yes this happens that your partner has sex with another and gives you HIV; very sadly for me, it happened to me - but it is blame is what is evil not the woman or person we got HIV from! Not those our men/women/partners may have had sex with to get HIV. We all suffer equally and HIV is a VIRUS!

    BUT woman with this hate attitude towards other women who have HIV rarely  blame their man?

    ( not that I at all  think blame is appropriate but ......I have been there.....a HIV diagnosis for many leads to angr as a first base..... so if your man is unfaithful and gives you HIV yes!!! you will be initially at least very angry as was I.  This is our prerogative to hold anger and deal and process it as we need to  -
    But to blame, this is very different -(But this anger in some can lead to blame.)

    I also find  harder to understand or accept that  it leads to many women who are not in this position i.e they do not have HIV. Fearing it and instead of compassion and making sure they are safe themselves, they blame women in general who have HIV for all HIV!! 

    This is so very HARD for me to understand on on level - but on another I understand  that they fear they are at risk

    They seem to blame the women their men could potentially have sex with or do, even when it has not happened to them and may not ever - what is this about!!.

    The attitude/opinion seems to be 'Men will be Men, can you blame them, its their instinct' - rubbish is what I say?

    We are all responsible for our own sexual activity and to protect ourselves.
    And at the total  risk of being controversial ,in my 57 years of life,  I do no think that women's sexual drives are that less urgent than mens??

    But the attitude is generally .........

    That the women whose  'men'  may be 'tempted' by and have sex with - who just 'may' have HIV -  are potentially evil and killers as they may have HIV, and definitely evil and killers if they do have HIV

    This has already led to an increasing level of violence by men towards HIV women, especially in America but it is happening here too and in Africa, where it has always happened.

    • This is another reason why instead of leading a quiet life as a HIV+ older woman - as I so could as I personally am not under threat from this - I have joined Pozfem UK a leading positive woman's activist group 
    • And do my best to challenge such attitudes everywhere I find them - online or in person - and I see both!

    The fear that seems to be driving the increase of this this worrying attitude towards is those with HIV+

    Is the fear of getting HIV. 

    And that those with HIV will sleep around and will infect you ( or your partner/s and so you) and as HIV is seen as a potential killer - as it stall is if you can not get the meds but not if you can.

    -that these nameless HIV+ people/often women, will potentially even 'murder' you, by infecting you or your partner?

    And that worse.......... hetero people with HIV, especially women, WANT AND LIVE to infect their sexual partners with HIV and do it deliberately in most if not all cases - So we are seen as evil and deserving of any suffering we get and deserving of any public insult, our status being outed online - on twitter etc

    • ( I am not talking about attitudes as they affect gay people here. I am not AT ALL minimizing what gay people are and have always gone though regarding HIV, and I am in solidarity with all gay men especially those with HIV. Gay men have always been regarded by some/many as a risk due to HIV and for many other reasons
    • But I am talking here specifically about attitudes that are now permeating the heterosexual community re HIV/AIDs even in Britain)

    This attitude of blame is completely in disregard of the fact that it is everyone's responsibility to protect yourself from HIV with ALL partners, new or old. As you can not EVER be certain of their status unless you have gone to a regular and  joint HIV test with them ( something being married to a seaman I wish now I had done regularly)

    But that protecting yourself against the HIV virus is always a joint responsibility even if you both think? you are HIV neg

    And in total disregard that most people, who know they have  HIV, do not want to infect anyone else!

    Yes some even if they know do not always tell their sexual partners straight away and for many very sound reasons that it is hard to fully appreciate unless you have HIV yourself- so this can happen for many reasons - that can not tell their partners they are HIV+-

    But this does not mean you put anyone one else at risk ?? If you know it is so VERY easy to avoid risk to anyone else  including sexual partners!

    (  there are many reasons why some do not feel able to disclose, especially straight away, especially women and one of them is this increasing abuse & violence worldwide towards HIV+ women) 

    Most people who know they have HIV take great care not to infect their sexual partners by insisting - if they can - on safer sex or condoms

    • BUT ....and very sadly if the truth is told many women who have HIV who are not lucky enough like me to have a long term partner just put their sexual, and consequentially their needs for intimacy, on hold. 
    • Since I have had HIV I have met many women with HIV I have met many women among them with HIV who have not had sex or any kind of intimate relationship for many years with anyone, often since the day of their diagnosis.

    It also disregards that the majority of those that pass HIV on are, like my husband , those that do not, as yet, the time they passed it on!, know they have HIV!.

    So everyone needs to protect themselves as if all they have sex with are HIV, or if they do not it is equally their responsibility if they get HIV, as it was mine.
    All of us with HIV are innocent.

    HIV - It is a virus not a crime!

    I will fight this horrendous attitude towards HIV till my own death - which with drugs I hope will be way into my 70s - and criminalization of those with HIV.

    Wednesday, 8 September 2010

    Miracle Mineral Solution! - Denialists and Anti HIV Drug believers

    As well as out and out HIV Denialists there are also those who believe HIV exists and can lead to AIDS but believe that HIV medications do you more harm than good and that you can be 'cured' or treated by 'natural ' or 'alternative' preparations and/or treatments.

    Some of these people actually have HIV themselves and I really fear for them if and when they get to the point in their HIV infection, like us, that if they do not take the drugs they will get ill and probably, sadly die of AIDs.

    But others are those who don't have HIV but believe in 'natural' medication above what they call Pharmaceutical medication for all illnesses including HIV. 

    They are not suggesting natural and herbal or alternative medicines are to be used alongside Pharm meds as many do to relieve symptoms ( and if it works for you and does not interact badly with any medication you are on, why not?) but instead rather than alongside of any professionally prescribed Pharmicutical meds.
    Here is where the danger lies!

    If you argue this with them, that these remedies are highly unlikely to be effective for severe life threatening illnesses like HIV and cancer as medical knowledge is against them being - except in some cases alongside Pharm Drugs and to alleviate symptoms -  and  you try say that they may not, as yet, had any debilitating illness that can be treated with Pharm meds that are potentially life threatening or severely affect quality of life? 

    That if they did find themselves with HIV or cancer etc they may find they alter their views and take the Pharm meds, they usually say they would not. But many have never yet had to face this situation so how can they know?

    I like to think that they would do the sensible thing and go to a 'real' doctor and take their advice rather than relying on unproven and dubious alternatives only, but I also fear that there are some that would go for 'alternative' medicines and die taking it. As after all there are many with Cancer, other conditions and also with HIV that do go down this line.

    To use alternatives does seems a sensible thing to do if alongside Pharm meds. That is if it helps you or relieves symptoms and many reputable AIDS ORGs agree that alternative medications along side traditional treatment can help if you have HIV:

    Or if there is as yet no medical treatment for your condition as with ME etc or if your cancer etc is sadly  untreatable, as taking something will perhaps relieve symptoms, at least make you feel you are proactive about your illness and give you hope.

    But with something like HIV, that will potentially will kill you untreated, which has no cure but does have a relatively effective treatment, it makes no sense to me at all to take only 'alternatives' and not the HIV meds as well!! Unless perhaps you live in a country or situation where you can not get proper HIV meds, which is always tragic.

    Many cite Lorenzo's Oil as evidence that 'alternative' treatments can work. But there is some evidence this may  have some effectiveness in some rare conditions although it is yet to be researched properly. So while I do not believe that it is outside the bounds of probability that some alternative medicines can help some conditions and at the very least relieve symptoms.

    But this bares no relation to HIV:

    But I was recently posted a link to one that for me takes the biscuit in its bizarreness and air of quackery!

    At the very least its name reminds me of potions hawked by the quack doctors of the wild west and that anyone could take any preparation seriously as a cure for anything especially HIV/AIDS astounds me!

    It is called MMS - Miracle Mineral Solution
    The truth has to be in the name!
    As if it cured anything at all it would truly be a bloody Miracle!

    Even the name of the 'inventor' has to be suspect - Jim Humble!
    He is making a fast buck out of it too selling it online worldwide and his books on many different sites and outlets.

    He is a well known fraudster with nothing to back up his claims and apparently his preparation is poisonous in itself. Yet people still buy the stuff!
    • The person who sent me this link actually did mean well. As a believer in 'natural' medicine he really believed that the HIV ARVs must be killing me and I would be so much better off taking a natural medicine like this with such a good testimony! He truly meant well but it appalls me that such is the ignorance about HIV/AIDs even in the UK  that anyone as educated as him and from the UK, could possibly believe that this would be an viable alternative for me or anyone else with HIV?
    But what I really object to is is this 'Jim Humble' is also selling it in Africa, where he in fact lives - (and other countries )  which with the numbers in Africa and elsewhere who may have money enough to pay for alternatives but cant get the HIV meds this is a VERY BIG market.
    • And even if he gives it away to some - which he does apparently in a clinic. This is only to give himself a degree of credibility to support him otherwise selling it - with all these so called HIV 'cures' there is always a money making angle
    This is not any different from the Pharm companies anti Pharm med people are so against right now, making a profit from their products in my view

    At least the Pharm companies have many checks and balances and are monitored
    Not saying the Pharm companies are great either, they are also making big bucks out of others misery and illness.But mavericks like this man 'Jim' and so many others can claim, do and say what they like with no one checking them or monitoring what they offer

    But what is the harm in promoting these so called cures and treatments for HIV?
    Well I, and others, say the potential harm is huge, in my view criminal.

    "Many peddlers of bogus cures insist their clients avoid all other treatments, including antiretroviral medicines. By the time a patient realizes the “cure” hasn’t worked, their prospects for successful antiretroviral treatment may well have diminished.
    Fake cures may also cause direct harm to health. Inventors often refuse to reveal their recipes. Some so-called cures have been found to contain industrial solvents, disinfectants and other poisons. The dangers posed by the virgin cleansing myth – which advocates sex with children as a cure for AIDS – are only too clear.
    Finally, the promotion of fake AIDS cures undermines HIV prevention. People who believe in a cure are less likely to fear becoming infected with HIV, and hence less likely to take precautions."

    There sadly are many other so called 'cures' and treatments for HIV/AIDs. Not least beetroot juice as advocated in South Africa by their government before South Africa thankfully got wize last year about the realities of  HIV /AIDs and started to offer free effective meds to those with HIV in SA:

    The number of so called HIV/AIDs cures are so numerous to mention here but here are some more  links if you are interested.

    If you have HIV/AIDS please do not try them. 
    What is sad to me is the number of people that do!

    Personally if one day I can not get HIV Pharm meds or they fail for me due to resistance etc the treatment I shall use is GIN! Mothers ruin!

    Gin is as good or better than most of the others. At least that way I may leave this life totally sozzled and hopefully not aware of anything much!

    Sunday, 5 September 2010

    HIV/AIDS Denialists

    Yes these very strange/odd - to me at least! -   people do exist! And I have come across them recently in person and online.

    It has been quite a journey to meet and talk with them and to learn what they believe. At times a very upsetting journey!

    I have also found that many, with and without HIV, do not know that these people exist or how prevalent they are - or in many ways how influential! And this in my opinion is so VERY dangerous!

    Denialists are those that either deny HIV and AIDS exists at all, and that it is not a virus.
    Some believe that if it does exist  it is entirely caused by your lifestyle i.e what you eat, being overweight, pollution, using drugs, both recreational or  that you take medications for illnesses and not just use 'natural ' medications or your sexual practices - anal sex is often cited for a reason for HIV/AIDs.

    • As a side issue - I know this is not relevant but this is my blog so I will say what I like - I have no objection AT ALL to anyone having any sort of sex they like, including anal sex, men or women. If someone enjoys it I have no objection to anyone doing whatever they want sexually as long as they are safe and it is by mutual consent. And many do like it anal sex and other sex i.e domination, dressing up, whatever??- I am happy for anyone to do whatever they like.
    • ( yet if they ever read this AIDs denialists will cite this as a reason why I have HIV won't they ?! As I am somehow immoral and so deserve to have HIV as even though I have always have had pretty ordinary sex. But to some denialists  it is enough that I think its OK for those who like it! So that explains why I now have HIV!
      Often when I talk to HIV?AIDs denialists my attitudes and opinions are enough of a reason  in itself as to why I now  have HIV/AIDS??
    • But I personally want it known I  have never had anal sex as tried it once or twice and got no where with it EVER, not even to first base, so did not happen.
    • Why did I put this very personal detail in? Too much information?? Well I did because I have been accused/told too many times recently by HIV?AIDS denialists that the reason I and my husband have HIV, and that he has had AIDs is because I/we must have preformed certain sexual practices - I assure you that apart from us being open and trying a few things between ourselves  - but not always succeeding -  our sexual life is and always has been very straight forward hetero pretty ordinary sex

    But if you tell them ( HIV/AIDs Denialists that you have none of these factors in your life - including bad diet, pollution, certain lifestyle choices, drug taking, anal or any other kind of sex they seem to disapprove of their view! .......... they just go on to find other reasons why you may now be ill and a cause to why you now have HIV!! 

    To many HIV/AIDs denilaists even if they think HIV exists  it is never just HIV as a virus that leads to AIDs. A virus that is what you were unfortunate to catch/acquire and that you now have ! Whatever you say they always have another explanation .

    So crazy really!

    Still other denialists do believe the HIV virus exists but at most is exists as a harmless 'carrier' virus. That if you get AIDs if your HIV is untreated then it is due to other factor ( see above)
    Many also refuse to believe that even if HIV exists, that it is a sexually transmitted illness/virus

    Still others believe in the HIV virus but that it is the toxic HIV medications that cause people to develop AIDs not your HIV!!
    This really does make me sooo MAD!
    Oh fucking tell Freddy Mercury this or tell the thousands of others who have died world wide before effective HIV/AIDS medications existed? And those who are still dying nowbecause they can not get the meds that keep us alive and well.
    Also tell many otherswo survived thanks to the meds,  including friends I have met who have had HIV for many years and famous ones such as Magic Johnston: who has survived  HIV for many years due to the HIV drugs .
    Or DAB Dab Garner: one of the first Americans to be diagnosed HIV positive and as he managed to survive until HIV meds were availale - unlike many he is still here thanks to surviving long enough to get effective  HIV meds and to tell his tale and is still  working hard to prevent others getting HIV- there are so many anectotal stories.

    But I accept these are not evidence, I leave evidence to the scientists and so should HIV /AIDs denilaists. They present themselves as if they know and that they are scientifically & medically able - but they are no more that than I am?
    At least I KNOW I am not medically trained or a scientist, these people seem to think they are.

    But in my opinion , the fact is HIV AIDs denialists are so wrong and there is much scientific evidence to support this  too - but this is my blog and I am not a scientist, I just have HIV.

    Some HIV/AIDs denialists even believe that those like me who take HIV ARVs - Antiretrovirals  - are addicts - that the ARVs are addictive and simular to taking Heroin! 
    That if those taking them stopped taking the ARVs they may get worse for a while but that this is drug withdrawal and eventually, once they are no longer addicted, they will be again well without the use of ARV meds!

    This is VERY dangerous as people with HIV who have reached the point of needing meds - like me and Barry - will die if they do not take them. and sadly the past is littered with HIV denialists that in fact died of AIDs but did not believe they had HIV/AIDs even on their death bed!! see...........
    •  and

    Denialists are rarely taken seriously by doctors medical people in the west, US, UK, Europe etc.

    BUT sadly they are at times taken seriously by qualified doctors in places - for instance Uganda right now -  where to believe in the existence of HIV and AIDs is currently against government policy and to do so is going against the government that probably employs them. So will not further their career, or worse may put them in danger to believe in HIV as a virus leading to AIDs that the only treatment is ARVs- yes this happens even to medical professionals in some countries even now - South Africa has completey changed now btu only a few years ago this was the position there too!!

    But also denialists are often believed by ordinary people many of whom have been diagnosed HIV positive. 

    There are many reasons for that, and for those it starts as denial - which is for many - including my husband briefly-  but not ever for me - is a first response to an HIV diagnosis.

    Therefore denialist claims can be so really attractive when you have been diagnosed with HIV yourself and are in denial and  shit scared and also have no idea how or if or how you can tell your family etc. 

    But denialists claims are also often also believed by those who have also had time to think about their diagnosis as they are very desperate and  looking for any other answer rather than face the realities of being HIV positive i.e  facing a lifetimes of medication and often stigma and discrimination.

    ( or if you can not get that medication as many still can not, very possibly AIDs and an early death and the stigma on top!)

    And so who can blame them for wanting an alternative? I don't! As I have found to my cost that to embrace that you have HIV, not ever deny and to be open is a VERY hard path indeed!

    I have found sadly that hetero women with HIV I have met in person and online can be likely to believe or half believe denialists claims and those that are Christian women or very devote in whatever religion they follow are more likely to believe denialists claims - especially the claims that say/believe it is not a sexually transmitted, illness. 
    It is so easy sadly to see why they want/indeed need to believe this! 

    Others that readily believe denialists claims I have found to be those who can not afford effective HIV medication.
    Usually/often because of the health system in the countries they live is one where they have to pay for their medical consultations, treatment and drugs directly or to pay for it need have medical insurance that they have to pay for. And of course can not pay direclty for treatment  and not all have insurance - and one thing I have learned is that a HIV diagnoses can restrict your ability to work and earn an income even if you are not as yet unwell!!!

    - and this, surprisingly to me, includes America as well as countries in Africa and many other countries where HIV meds have to be paid for even if you are actually dying for AIDs. And if you do not have the money to pay for them, you can not get them!

    This for me from my privilaged situation in the United Kingdom, where my HIV meds are totally free to me the sadist situation I feel.

    I can so see why those in this situation want to believe the denialists claims? What real option do you have to stay as positive about your life as you can using any means that you can when you do not have access to the only medication that will save your life?

     Especially if the denialists  are offering 'alternative' 'cures' or 'treatment' that some may be able to afford. And many denialists combine their obsession of converting people to their cause with selling 'alternative' or 'natural ' 'treatments'.

    To be fair not all denialists are selling their 'alternatives' or are trying to get people to use them or follow their regimes for financial gain.

    • I have met many Denialists that really believe they have the best interests of those with HIV at heart. Many that 'encourage' those diagnosed with HIV to use various natural or herbal medicines.
    • And in fact many set up projects that often give their natural remedies out for free to those with HIV/AIDs and truly believe they work! 
    • Also those who propound lifestyle changes, like living in an 'unpolluted' situation,  not eating meat, even being vegan etc, etc .I could go on - they seem to mean well, but are so VERY dangerous!!

    Rather than repeat all I have written in other arenas on the internet and all the links posted for further informaton.
    I intend to post dialogues with others I have had elsewhere about and with HIV/AIDs denialists - I just have to check with those I have spoken too about this in other arenas, that they do not mind me quoting them?

    Positive Thinking – or you can’t always get what you want!

    I was told recently while on a course you can achieve anything if you really want to. Then I was told this again by someone I know on Facebook! In fact I often get told this when I dare tell anyone that I am struggling with something!

    The implication it seemed to me on the first instance that because felt very upset that I was not able to grasp what in fact I was desperately trying to learn was somehow due to my own lack of effort, not wanting it enough or not trying hard enough; the other because I dared write about my situation, my disappointments and how hard it is sometimes and not agree that positive thinking was always the way forward, that I believe that you need to see things as they really are and go through a process and sometimes that process is grief before you accept what you can have and not strive frustratingly for that you can not.

    And I in fact know that's crap.

    If the person/people who said that has up to this point got everything they have wanted – and they often say they have through thinking positively -  then lucky them! Yes they may or may not have worked hard for what they have, but I have too and I do not always succeed or get what I want.  They have probably put a lot of effort into what the do or have done and deserve to succeed in what they do.

    But it is just simply NOT true that you can achieve/get everything you want simply because you want it enough or even because you work at it hard enough and try hard enough.

    Yes it helps. You have to work for what you want or need and it helps to really want it, but it just does not always work that way and if the person who said this has not learned this yet it is going to be a hard lesson when they do. And every one learns it one day.

    One reason you can not always get what you want or achieve what you want is it is not always up to you, others wants, needs and actions can get in the way of what you want. And rightly too! None of us is an island.

    I guess the more single minded you are and the less you care about others needs, intentions and concerns the more you may get what you think you want, but in the end everyone finds that unless they railroad over all barriers including other people there will be a time when they won't get what they want however much they want it. 

    So it's rubbish, but being told that by someone still hurts - even though I know it is crap it was still a direct and deliberate dig at me because I was really finding the course we were on together at the time hard. 

    Don't some people love sticking the knife in and doing it with a smile as if they are trying to be helpful- when both you and they know it's a knife! 

    I am always tempted to say how it’s like to have to be positive because I am Positive,  HIV positive? And how well you have to know yourself and how positively you have to live your life if you are going to manage to survive being HIV positive, mentally and emotionally

    But I know I am right anyway - you can't always get what you want, in the words of the Rolling Stones

    For example for many years I wanted Barry to leave the sea & start a business with me years ago but he would not. And due to the nature of the business unless he came home form sea and helped with it  I could not start that business as long as I was with him. I could have left him I guess and set up with someone else, but the other thing I truly want, is to be with him.

    So I had a decision to make, what did I most care about, success in business or being with my husband. Ironically I did get this thing I wanted and through having HIV as Through having HIV Barry lost his job at sea and then together we started this business. >

    But like everything I have found to get what you want you also often have to lose something. In this case I only got the business because we both lost our health!

    Other examples in my life are:
    I hugely wanted to have a natural birth and did everything I could to ensure I would, but my body and my baby had other ideas, so I had the opposite an emergency Cesarean- don't tell me that was because I did not want a natural birth enough or try enough? And believe me in those days I was a very positive person. If I had insisted on a natural birth, I would have lost my baby!

    I always wanted a university degree that I don’t have one or why I can not be bothered to go fully into it here but it was not because I did not want it enough or work hard enough. Briefly I was the wrong sex and background in an age that girls like me who went to secondary school were expected to either marry young or go to work at 15, I did not marry young so I went to work at 15.The boys in my family were treated differently - they both got university degrees and both have/have PHDs That is how it was for women - and not to long ago!

    I did make up for it later when I trained and qualified as a teacher, but I did not have the educational background to get on a degree course so I came away with a Cert Ed with Distinction. I still have hopes of that degree but so far it alludes me mostly because I would have to pay and no longer have the money.

    I could go on but I am too angry.  #**/+%

    It always makes me angry when people tell me you can have anything you want if you try hard enough, really want it and think positively. It makes me more angry when they try to tell me that I do not always get what I want because I am not positive enough or don’t want it enough or do not work or try hard enough – I am and do  all those things!

    Getting what you want is simply not always in your control, well not if you want to consider other people and their needs. And if you think it is then you are wrong and it will be a nasty shock when you find this out.

    - Posted using BlogPress from my iPhone

    Wednesday, 21 July 2010

    HIV and the over 50s in the UK

    The Vienna AIDS Conference, currently happening now - which I so wish I could have attended but could not - has led to more awareness of HIV in the older generation and in the UK. I do not have time right now to re-write it for this blog so I have just reproduced my comments I sent to national UK media on this


    Both my husband and I, now 58 and 57 are one of theses statistics as we now live with HIV, we have known for approximately 2.5 to 3 years.

    Since my diagnosis I have tired my best as just one individual to raise awareness of the rising rate of HIV in older people and the risks of HIV for those over 50 specifically.

    And to draw attention to the fact that HIV has not gone away and new diagnosies are happening every day and amonst all, gay or straight, women and men and in all countries in the world, including the UK.!

    To that aim I have since my diagnosis  been in a national newspaper - the People, and a few magazines and on local radio and on Embarrassing Bodies ( channel 4) .

    I am sure most who saw me on any of those thought that I was somehow an attention seeker who just wanted to be on the media?

    Nothing could be further from the truth.

    We have lived for 25 years a VERY quiet life in a smallholding in Cornwall, and that is how we want to live. If it was not for HIV we would never have been known to anyone.
    But when I was diagnosed HIV I found it was like joining a secret club. That so many in the UK, and even in Cornwall young and over 40+ have HIV, and the media seems to have let HIV drop through their radar and of no interest,  as if it is only something that is happening in Africa etc!!

    Anyway, as to our story.

    We did not think we were at risk? And I certainly did not!

    Why would I? As I have been married to my husband for 20+ years and faithful to one man, my husband, for over 30 years.

    But sadly my husband made a brief - very brief - 'mistake' with a woman when he was approx 50 years old about 8 years ago, acquired HIV and unknown to me, gave it to me.

    He sadly had progressed to AIDs before he was diagnosed ( and I already had symptoms and was also near/verging on AIDs) as he never thought one incident in over 25 years of marriage and 30 years of being with me, one person, would lead to HIV.

    So he never told me he was unfaithful - out of shame and guilt, and the hope that he could forget his one transgression, not because his aim was he wanted to deceive me, but out of shame hat he had ever done this.

    So while it is no excuse that I also did not protect myself as I should have been more aware - as should we all!!

    As I had reached the menopause I had long stopped using contraception and while I was/and am  very aware of STIs having worked as a Youth worker with one of my roles sexual and sexual health awareness with young people, I simply did not think I needed to use protection with my husband.

    Therefore I, like many women of all ages, I did not have the information to know to protect myself so now at 57 I find I am also HIV positive.

    HIV may now be controllable with medication, medication which we are both on, but this does not make it any easier at all.

    The medication does have side effects. For me life changing side effects for my husband less but still interferes with his quality of life.

    And as infection starting when you are over 50 is a comparatively new thing no one really knows what the prognosis is in the long term for the over 50s. When you are over 50 your immune system is not as good as it is when you are younger, also the Antiretrovaral medications are highly toxic and known to damage liver, heart and kidneys and if you have lived till your 50s theses organs have taken a battering even if you are not a drinker etc - and we are not - and ARVs only delay at best the onset of AIDs and al on ARVs or with HIV are 70% more prone to many cancers than the general population so for us it is a life sentence and a waiting game. We want to survive until our young 21 year old daughter is at least 30, to see her set up, that is our only ambition now.

    And HIV is STILL a highly stigmatized illness - I can not share what I am going thorough with other women my age in the same way I may have if I had another illness breast or cervical cancer for instance and this isolates me and makes me feel so very alone.

    And for no one is living with HIV something anyone would ever want.

    Nor is living and coping with a stigmatized illness such as HIV how we would wish to lead the short years of active life we all  have left when in our 50s.

    My message to the over 50s or even the over 45s is:

    Don't join us?
    Be careful, use protection whoever your sexual partner is. And if you have reason to feel you have ever taken a risk at all.........................

    Get TESTED!
    If you are 45, 50, or even 80, get tested
    As HIV can be treated and controlled and you do not want to get to the stage of AIDs like my husband and I before you get that treatment.

    Wednesday, 12 May 2010

    My views on the Election & LibDem/Con Alliance

    So what has the outcome of the election, hung parliament and subsequent LibDem/Conservative coalition got to do with living with HIV.
    Everything is the answer 
    Because with HIV government policies I believe will directly affect my life,and the lives of many other vulnerable, poor disabled , ill people especially in the area of Health care and social and other services, social care,  benefits,  Disability Living Allowance in particular and in so many other areas

    I might as well post what I have written elsewhere as an explanation of my views:

    I lived through the Thatcher years and the Labour government before that and through the hung parliament in between, as I am now 57

    As a young person who left school at 15- in 1968 from then through most of my 20s I did unskilled labour until I went to 'night school ' and studied and eventually qualified as a teacher/youth worker I experienced low paid, often  manual work in very poor conditions in the 1970s
    I then worked in the public sector as a professional youth and community worker worker from 1977 to 1986 in inner city London, both for the Local  Authority and then for a grant supported charity. Then in Cornwall from 1986 for Cornwall County Youth service, working with children from low income families and Cornwall as a very poor and rural Community was left reeling from the Thatcher years, even if you had a job etc living in Cornwall you suffered from poor services etc - we still do.

    And so in London and Cornwall I saw first hand the devastation to lives that Thatcher policies caused to those of low incomes and to communities.

    Yet at the same time there were those making a financial 'killing' out of it - hence the term Yuppies etc .

    So if you were among the privileged who befitted financially under Maggie Thatchers  rule you probably never saw - and perhaps did not care?

    ............. what it was doing to those who were living on the knife edge of poverty or below to whom just a few pounds a week and loss of services made a huge difference to the vulnerable.

    In my 20s I also lived through the civil unrest and strikes in London that preceded MT government, that led to piles of rubbish higher than our houses infested with rats, the 3 day week, power cuts, the dead not being buried etc - which to be fair started in a Labour reign but was made worse by a hung parliament as far as I recall.

    Which led to the dawn of new Labour.

    I was actually lucky - or not lucky as I worked very hard - to always have a job and while not a high earner I was always waged during all theses times and so while I saw what dire situations people were in as I worked throughout - even managed to keep my job during the 3 day week as a young person in my 20s - so I was also I guess privileged,

    But I was never blind!

    So if I look into the past governments I have directly experienced, New Labour did better in terms of the welfare of ordinary people and the disadvantaged than any. There is always room for improvement and I did not like what happened re the Iraq war and other things - but then the Cons would almost certainly have taken us into that war anyway -

    But I dread a return of a Conservative gov far more than a Labour - I was hopping against all logic and hope for Lib Dems and am disappointed as I felt that LD combined with Lab might be a winning team to get it right

    i.e get the balance that has up to this point been missing in our polarized party politics type governments.

    Now all I can hope for is the presence of LibDems moderates what I know a Conservative government is capable of doing to the welfare of the vulnerable, disabled and poor

    A group that I due to life events I now sadly now belong

    So now I am not only going to see what happens first hand as a Youth and Community Worker. 
    Now as a disabled person with a horrible virus called HIV  which affects my ability to work, I will experience what this government brings directly, and I find it very scary.

    Thursday, 22 April 2010

    My torn ligaments - very depressing

     On the 29/3/10 I fell and tore the ligaments in my right ankle - not a problem you may think ?/ No BIG Deal!!
    But try having an ankle fusion on the other ankle, Living with HIV and working for yourself where whether you are disabled or not - you have no choice - you have to work even if you have to crawl to do it!!

    Thanks all - I am not completely stuck in the house but as I live up an unmade track which I cant walk down - and it only gets me to a village that has nothing not even a shop anyway!! and with an ankle fusion on my left ankle which means I have to drive an automatic car and now ligaments on my right I am pretty much dependent on my husband right now to drive me everywhere, and I hate being dependent like this.

    But what is depressing me so much is from being a very fit person who rode at least 3 times a week,worked & led an active life, walked my dogs and cycled that it then took me about 2 years to be able to walk reasonably at all after the accident then the fusion means I will always need a stick at times then while recovering from the fusion the HIV diagnosis came which knocked me for six - just such a shock as I am sure you know.

    But then I was in the last 8 months really being proactive and fighting back and doing really well. My ankle fusion pain had settled down and I was going to aqua aerobics, Gym, Zumba and a choir & had lost a bit of weight that I really needed to do as it helps my ankles and knees to be lighter....

    But then on the 29/3 I fell and tore my ligament in the other leg ankle and have not been able to do any of my activities except the choir - and then my husband has to take me, I have put on a stone and missed the last PozFem meeting in London:

    Because  I felt could not go on the train & carry my bags on my own, not could I do the walking involved for the itinerary.

    The feeling of real depression today is I am realizing that my ligament is no better - in fact over the last few days more painful for some reason - and it will take months to get right again & I can do nothing much to make it right as ligaments just take time - but I fear it has undone all the progress I had made.

    I'll get over it yes and troupe on, but today I am really fed up - not I feel clinically depressed but really fed up!!!

    I may sound very needy right now & so apologize that I do - but I really did spend many years supporting others and not asking anyone for support....

    My my mum was right when she used to say
    what goes around comes around?

    As on one hand I feel bad that I seem to post my needs for support online far too often when in the past I never would have at all .

    but at the same time I have supported many, many people online over the years, in fact since 1998 . Some may not know this to be so - but it is so.

    But I need support myself now and maybe with HIV - ------

    I feel that unless I can get a complete handle on it that works 100% and allows me to live in complete harmony with the fact I have HIV? I so hope so - but I have to accept I may always now be needy online.


    I really do appreciate  all of you that have over the last year or so responded to my posts online and here .

    Especially as I know each and every one of you have your own stuff to bear - physical or emotional/mental - and that you are all very brave people.

    I may sound very needy right now & so apologize that I do - but I really did spend many years supporting others and not asking anyone for support....

    My my mum was right when she used to say
    what goes around comes around?

    As on one hand I feel bad that I seem to post my needs for support online far too often when in the past I never would have at all .

    but at the same time I have supported many, many people online over the years, in fact since 1998 . Some may not know this to be so - but it is so.

    But I need support myself now and maybe with HIV - ------

    Unless I can get a complete handle on it that works 100% and allows me to live in complete harmony with the fact I have HIV? I so hope so - but I have to accept I may always now be needy online

    Love you all