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!!!