Friday, 24 February 2012

Is honesty and Truth Always the best Policy?

I am now thinking I should close or stop using my blog again.

And maybe some on line groups?

My mother named me Veritee, which means truth and it was very apt. As I have always have found it difficult to be anything other than very strictly truthful. And I am afraid this has in the past , all my life, upset others.
As I often tell the exact literal truth.

 For instance as a very shallow example

I will say 'yes your bum does look big in that!' Or call a shovel a shovel.  When others would have thought it but censored what they say .

And  also will tell it how I see it unbidden and then regret it hugely, especially if the person is hurt , as that was not what I wanted to do.

I was just telling it how it is for me.
I have learnt to censor myself a little as I get older in person, but NOT in my writing!

So I stopped using this blog much about 18 months 2 years ago because as I know that when I get riled/pumped up  about something I use my blog to off load about 'exactly' how I feel and that to me there is no point at all in having a blog if I cannot do that?

But I upset some people and organisations by doing this and I need their support.

And among others KPS got upset in the past about some of the things I said on this blog, and I have blogged again about them recently and I fear they will not be pleased!

At the time, not now, but when I last 'got into trouble' with them. What I said  was not directly about the charity KPS, I did write a bit about them but the main entry in question was my being critical or rather very upset of how I was treated by one of the consultants at the GU clinic when I was first diagnosed.

As on the first time I went to the clinic after I had had my results, having been told over the phone,  and Barry had been in hospital and was still in hospital so I had not been able to talk to him at all,  but was allowed out of the ward to be with me and I said to him  in front of the consultant that he should have
'kept it in his fucking pants!'

And the consultant said I was abusing my husband? and showed me no compassion at all for what I was going through and what a shock it had been to find out you had HIV at 55, when you had never had sex with anyone but your husband since you met in the early 80s and your husband now being hospitalised, very ill with AIDS.

And KPS trustees were worried of how critical I was about this and the GU clinic at the time in and expressed this in a blog entry, because Kernow Positive Support has to work very closely with the GU clinic at the Royal Cornwall Hospital and relies on their support, apparently KPS would not have got off the ground without this support and they are very careful not to rock the boat with the consultants and doctors there.

But I did not know this.

I was just a person struggling with my fairly new diagnosis and I had gone to KPS for support and one of the issues I needed support about was how I had found at that point the GU clinic less than supportive, empathic understanding of what I was going through and I had NO IDEA it was not possible to run a charity to support people with HIV in this country without 'keeping in' with the local GU clinic!!!

And I also had no idea how or what I said on my own blog as just in individual not working for that or any charity would affect in any way KPS  anyway ( or to the newspapers as I did go in a newspaper , I did not criticise the GU in that but did say I had not felt had yet had much support from them or any one or any organisation)

But apparently it does and KPS was 'concerned' about this and a few other things I wrote when I was last very actively using my blog.

 And in fact they were very concerned simply about  how open I was, and still am, in person and on my blog, about being HIV positive and kept warning me not to be and I just did not get how it was any of their business how open I was?

I think in part , in retrospect, they were concerned about me and that I would get attacked by the general public or stigmatised more or abused or whatever and they also did say they were concerned I woud not have support form others HIV+ in the area if I continued to be so public and to say what I feel.

But quite frankly 4 years on and that has not happened greatly. In fact the most of the criticism I have had has been from some trustees at this charity and ironically to me, a few people that are also HIV+ in the area??

So they were right about that, that I may also get stick from other HIV+ people as indeed I have.

I did not at that point understand how or why I would. Surely it was my business and my business alone if I wanted to be open about being HIV positive

But I did not realise then how scared others with HIV in the area might be of a person like me who was open - which proved to be true that some were and I am a LOT more subtle now about what I say in person.

Not for myself but out of respect for others with it because many were and are still are hiding their HIV positive status, at times even from their family.

 And some who use KPS had expressed that I 'worried' them as in revealing my status I may accidentally reveal theirs, which of course I would not do and never have! Or that they would be 'outed' by association with me?

Which made no sense to me as I have many negative friends and acquaintances so how would anyone know if a HIV person was out and about with me that they were HIV+ too!!

But in the early days of my blog and being open in public generally and because by then I was partially 'associated ' with KPS as I had tried to start a positive women's group with their help, I was called into the office by one of the trustees and a worker and basically given a lecture of how I much be more 'careful ' about what I say, on my blog and in person?

They even were concerned about something I had said in Facebook they had read! Where I said something like ;

' there are women with HIV everywhere, even older women like me, even in a rural place like Cornwall, The oldest I know personally here is 62.'

I did not name that women and there are other, in fact,  older women than her in Cornwall with HIV, and some on my Facebook.

And  out of the thousands of older women in Cornwall she could not be identified by that as being 'the one' with HIV!!
But KPS was worried that I had by this disclosed this persons status!! And in fact she deleted me from her Facebook and complained about me to KPS! even though no one would know it was her.  As a women in my 50s I know loads of negative over 50 women on Facebook! She does not even say she lives in Cornwall, so no way was I disclosing her status!

But it was a lesson learnt. That some women with HIV in Cornwall are so fearful  of their status being disclosed, that they are scared of me and associating with me because I am open and I can not even mention that anyone around their age or or their gender has HIV in Cornwlal , in case it is guessed I am talking about them?

And to a degree I do get it. It is not easy anywhere to be a women who is HIV+ and probably harder if older and even harder if you are single?

I know I am protected from direct abuse and some of the things that could potentially happen to me as a women with HIV, a highly stigmatised virus, by the fact I live with Barry - married to him - and we are usually together. And I am not seen as any kind of sexual threat i.e that I will potentialy spread my horrible and deadly virus !!!

I was naive, it was early days for me, and did not realise at first that that is how women, especially  single women with HIV can be seen, of any age.
So I do now get their fear and have tired to be very careful about what I say in person.

I was also so scared that KPS would not let me try to continue to start this woman's group with their help  and I realised by then that without their help I simply could not do it as I had no direct way of contacting positive women in the area without them.

As most , if not all are quite secret about their status, so there is no way of me finding out who they are or getting their contact details without KPS's help  and many would not want me directly to have their contact details.

I have thankfully met maybe 2 since,  who do not generally 'put it out there' that they have HIV but are not scared of being associated with me and would not mind my having their contact details However most still don't want to be seen with me or associate with me an open poz women in public and do not want me to know where they live or have their number etc.

So at that meeting about 2 years ago I promised I would be more 'careful ' about what I say in future. Barry came with me so he witnesed what was asked of me and why and I really have tried to do it for the last 18 months or so  i.e keep my big mouth buttoned.
I knew I could do this in person and I have, very much tried. but I have never been able to be 'non contravesal' or refrain from saying what I really think in writing and as all contact on the web is done in writing and my blog is written.

So I simply stopped using it!

And for a while did not even use online groups as much as I had, and did not go in the media for a while.
Then I realised that this was not really achieving anything for me that I needed., I had no more support than I had had before, probably less, and I could not express myself .

So I started to go back on groups on line and then on Worlds AIDS Day I was asked to do on ITV This Morning and talk about HIV. I was reluctant at first but they said they could not find anyone else - hard to believe, but this may be true as they wanted and older heterosexual women. And they contacted me only the day before and I had to get on a plane that afternoon and it was the day of the transport strike - so maybe they could not find anyone else??

So I broke my ban on being in the media and did the show.
Then recently I decided I can not live feeling my mouth is tied.

That it's my blog and it is up to me what I write in it and why should I be scared to write on it.
And  if what I want to say is about KPS why can I not say it? I am NOT an employee and while I had great hopes of being able to work with them on awareness and discussions in school that has never happened as I have 'blotted my copy  book ' by being too open and speaking my mind right form the start and they will never trust me.

And I refuse to be scared and if I say something critical of them or any other organisation I will lose the only support I have.

However I am now having second thoughts - I will lose my support if I do not watch my mouth or rather my typing.
I also recently said something on a Poz womens group online discussion  that did not go down well.

Sadly for me this is a group that I so value and that being able to meet up for as while, when they had funding for face to face meetings with those lovely out and strong women, did change how I deal with being HIV positive, my attitude towards myself and I value their support  -

What I said it  was actually about me and how I perceived something that had happened, not about anyone else. But I named the women it happened with.

This was really not said to not to upset her, although it did and some may say you can say what happened and not name people?

But actually while I will respect usually that others want it like that and think it is best not to name anyone, you know I really do not see it like this, not in closed groups.

This incident happened, it was about how I perceived it, it was not about her and was to explain why I hardly use even their private closed group any more despite how much I respect their organisation.

And had I said - this (unnamed) facilitator after a group  had said this thing and it hurt and it is an example of how I react and how other perceive me, and that unless I have a chance to talk it through with them, and we have not met since , it can affect me for years

And if I had NOT named her she would have knew I meant her and to talk about something another said to me without naming them when most - including the person it was about -  would have guessed..........................

I feel is disrespectful . If you are going to say it you have to say who it is.

That is in a small closed group where we all know each other and it is possible to guess easilly who I mean.
But I guess I just think differently from other people. Maybe I have never learnt the implicity  RULES of social interaction, or have my own?

This could be so as I was a feral kid with no guidence and had to learn the rules for myself and I guess I often get them very wrong!

But I know I think differently from a lot of people and that probably I should not have said it at all
I have not named her or the group here as people who read this blog are not part of the group and it is not relavant to what I am saying.

Naming KPS on my blogs about their funding, I feel is appropriate.  As anyway I am sure as there is only one HIV support Charity in Cornwall that got a lottery grant and almost anyone would know what one I meant, it would be silly, and disrespectful in my view, to call them , 'an unnamed Cornish HIV Charity'?

But I agree at times I have a problem, with all of this. i.e boundaries.

That  in writing I find it very hard to censor myself and in fact do not want to as often it is my only release of how I feel I have.

But I know what I write is really not about anyone else but about me and I do not wish to hurt and sorry when I do.
But thi,  it is my blog , not theirs.

But when I am sounding off like this I can sound very critical when I get upset about something and upset otters or organisations and this is actually not my intention.

I think I am just being REAL about what I feel and my opinions and I have a right to be especially on my own blog?

Sadly others do not see it this way.

And so I am now very worried about what I said about KPS and their lottery grant

As I know that if they read it, they will read it as if I am against The Trebullon Respite Center and any funding for it .
And as this is very close to one of the trustees heart, he at least will read it as a criticism and may be VERY !! angry .
I am not at all  - and it was not intended like this.

 I support any services for those HIV+

But I don't want Trebullon Respie Center to be funded at the expense of other services for those of us that live too far to use it regularly or at all.

And I do not want all KPS services to be centralised at Trebullon , which has always been my fear,
 As effectively that will mean I - and quite a few others -  can't access those services in any real way.

And it would have been nice to have been consulted,more at least told ?

As when the radio rang me a couple of weeks ago for me to comment on this grant I had to say I had absolutely no idea at all about it.!! They assumed that as a HIV+person in the area I would know everything about it and sounded disbelieving when it seemed I did not?

And I did not even know it was KPS that had been awarded that money, or some other charity I'd never heard of?
The radio presenter did not know the name of the charity either, I asked and he said he did not know, just a Cornish charity
And the presenter expected me to know and got his facts wrong as told me the money was to create jobs for people with HIV? So I assumed it was some sort of job providing charity, not KPS

So I just said I could not comment as I know nothing about it and a charity to create jobs for those with HIV probably would not be of use to me personally as I am 59, have other disabilities as well as HIV and doubt I will ever be on the open job market again.
It made me feel stupid and embarrished not to know - not to have been told

But I am wondering if I should pull my blog entries about this?
If I don't remove my blog posts and anyone at KPS read it  I will probably be blown out by KPS anyway
And that leaves me nowhere to go if in the future things change and I become ill or Barry does and we need their help.

 But I  get the feeling I am blown out anyway in terms of doing any real work with them, or even being included in any support other maybe than the woman's group?

My outspokenness never gelled with some of the workers, many who use KPS and the older trustees anyway and I have been warned before.

Hard to know what to do??
Censor myself on the off chance that one day I will get support and be included , when I never have been anyway?

Not by KPS and not really by any other HIV charity nor many others with HIV locally

Or speak my mind on my own blog and online ? - Difficult

Thursday, 23 February 2012

It really is about consultation and inclusion not sour grapes for me

It really is about consultation and inclusion and that any money that comes to Cornwall for those with HIV goes mainly to those of us that live in Cornwall.
I am sure many will think, reading this blog that it is sour graps that is,  but honestly it is NOT not about sour grapes for me. No way do I want to run a HIV charity nor am I in competition in any way. All I smply want is for there to be a hIV support and awareness service that first and foremost meets th needs of those of us that live with HIV in Cornwall.

I know that some are getting their needs met via KPS, it is not all bad. Mostly those who need benefit advice - I don't - accomodation - I don't - lifts to hospital  - may one day but currently I don't

What I want for me and others with HIV that do not need basic services like beneit advice, accomotation etc is to feel part of something, for my/our views to be heard, to be consulted as a women/man who lives with HIV.

Also for some activities, maybe a residental or two we can go to with others living with HIV, perhaps also a social get together now and then, or an activity or two we can do together.

But I and my husband never have been consulted, nor had any invites to any residentals or activities - apart from 4 womens groupa that seems to have died again that I in fact started , and one christmas lunch and 2 events t Trebullon that was to promote Trebullon and not specifically for us, we have got very little from KPS

We may not need benefits advice, accomodation or ongoing every day support etc   - but we count too?? Or don't we??

Fair enough if KPS was just set up to run a respite center tyhat is fine. And I am not saying a respite center is not a good idea.  And I have alwasy supported it. But it should be in addition to their services , NOT INSTEAD OF!
If they are going to run this they should become a split charity or two charities. One to run the respite the other to provide services and support for those of us that live in Cornwall with HIV - for one charity to do both under the same management and with the same staff is totally incompatable!!
But what do I know. I am only a client!?

Since this respite center has been happening it seems to me KPS is completly focusing on that and there are few services or support or anything we who are not near this center can access? There never was a lot. Well not a lot that we were ever able to access anyway
And now my worry, indeed my certancy, is with this new lottery grant, there will be even less outside of Trebullon respite Center for any of us?

As KPS ( Kernow Positive Support) just got 250,000k and not much of it is going to be spent directly on those of us that live with HIV in Cornwall that can not get to the respite center as far as I can see?
It is going to be spent at Trebullom and mostly on services for those that visit there and many of those who use these services will, as far as I can see,  be from outside the county of Cornwall?
And to promote awarness in partnership with schools etc??
Awareness is a great idea too and I really support this kind of work in Cornwall about HIV. I have been asking if I can do this kind of work with them ever since the day I was diagnosed as that is what I was trained to do and did as a youth worker. But they have NEVER asked me apart form one awareness day over 3 years ago!!!
But as a qualified teacher and Youth Worker who worked for over 14 years with schools and young people in Cornwall often on the issues of sexual health as I am trained in this,  and someone who now lives with HIV, I have asked so many times to be involved and consulted and to be part of and perhaps even present on such schemes . ( with the provison that I would love to take part but need it to be within a 20 mile travelling radius - NOT at Trebullon!!! As that takes me neatly an hour and a half to drive there and the same back is just too far for me .
I will do a one off at Trebullon but could not commit regularly.
But never been asked by KPS.
Doubt even with this money I will ever  be asked even now - pigs might fly  - but I will wait in hope!

But I guess now I have writen this I will never now be involved ???
And actually do I care? As KPS has let me and my husband down in terms of doing anything much personaly that was useful to us , from the very first day of our diagnosis!
  • Anyone want to work wth me on starting our own support charity? - doubt it will work but honestly it may be mine and many others only option to feel we are being included, supported, consulted?
As what about consultation and involving those of us that live with HIV in Cornwall????
First I heard of it was when I was asked by the BBC about 10 days ago to comment on it??
And I said I couldn't as no one had told me anything about it or consulted me - a women living with HIV in Cornwall, or my husband or anyone else I know with HIV in Cornwall, at all
And I said I couldn't as no one had told me anything about it or consulted me - a women living with HIV in Cornwall, or my husband or anyone else I know with HIV in Cornwall, at all

So much for consultation and involvement of those of us with HIV??? and our families
I am so angry I could spit

Even if those of us that live in Cornwall can and do occasionally access those services at Trebullion, how practically can it be of any lasting or ongoing help/support to us who live the other side of Truro?
Even if they pay my fare or petrol - ys they do offer this but that is not the point - as I cannot drive up and down to Bodmin Moor from here just to get a little support? And I have a car. Many do not even have a car.

There is no public transport to Trebullon to speak of even from Bodmin. And sure KPS will say but they will give us or anyone who wants to go there a lift. But how many lifts can a charity with no full time workers and often no regular  drivers and often no real communication give?
And also there is a question of autonomy?
Maybe some of us with HIV do not want to be babied and always rely on someone else giving us a lift to somewhere , just so we can get support?
We might want to get there under our own steam, or be able to just ‘pop’ in for a chat.

It is bad enough for any of us more than 8 miles from Truro - we are 16+ miles away  -  to do this at the office at the GU clinic in the Royal Cornwall Hospital to just pop in when we need some support. But at least we can do so when we go to the clinic for our meds and our check ups , but even this does not include us in anything that may be more beneficial than just a quick coffee and a chat  
And as I and Barry get older this is going to be even less likely for me and Barry.
And there is a world this side of Truro and people with HIV and their relatives that live this side of Truro will not get much in the way of support or more impotantly in terms of this acess to the enhanced services and activities this money will pay for.

As far as I can see everything will now happen out of Trebullion and most of the money will go to those who use Trebullion and many from outside of Cornwall.
I am NOT saying a respite center is not a good idea. It is a great idea. Thre are too few of them. Only one other in Wales . But should a small charity be concentrating on this when they are not supporting those of us that live in Cornwall with HIV?

And as said before  it should be in addition to their services , NOT INSTEAD OF
KPS is 'supposed' also to support those of us that live with HIV all over the county of Cornwall and not all of us, very few of us,  can easilly access Trebullon

Wednesday, 22 February 2012

Nothing About Us Without Us

I totally agree when it come to HIV and from living with HIV it has to be.......
Nothing About Us Without Us
This did not happen in this case - not at all!

Best slogan anyone has ever come up with when it comes to any support, medical care or anything for those of us that live with HIV

This is the only way it can be and have any meaning at all to us that live with HIV??

So I get very angry when this is not done . Especially by the charity that is supposed to be our only support charity in Cornwall for those of us with HIV, does not do this.

You may say - And they WILL say. Why should we be included or consulted?

But why NOT?

And what does it cost to include us?

One email, perhaps, maybe one phone call, maybe a meeting?
A phone call or two, just a smidgen of information that you were at KPS even applying for this lottery grant , might have been just slightly nice for us to know ??

To be consulted would have been even better

Thank you so much for involving all us in Cornwall that live with HIV - Nothing About Us Without Us - Great you abide with this
To invite your charity volunteers and clients/users ..whatever you wish to call us  to a meeting is of course was out of the question and I would never expect that.............Actually I so lie I as  of course you should have invited us all to such a meeting

This actually  is not about you KPS, it is about us?
Did you have a meeting  about this lottery application and NOT invite your volunteers, or service users??

And on a very personal level I would like to know ............?

Are me and Barry volunteers or clients  in your eyes n fact?? We would both like to know where we stand?

- I would like to know as it seems to me we are volunteers when it suits you and we can help or use us, and clients when it does not ??

Thank you so much KPS for your extensive and ongoing support to us - me and Barry!!

OK get real here.

Some of the trustees of KPS have HIV - maybe all of he current trustees do???
We do so get that, and some who were trustees have died and we are so VERY sorry

But the minute you start a charity it ceases to be about you the trustees , those who founded it, those who went before .

It is about those who your charity are supposed to support now and their needs, now

This is a very hard  concept as I so well know as I started a charity myself www.pni, in 1998 and I have long had to understand that even though I suffered PNI this charity is not now about me , but it it is about those who use it, currently at any one time .
I think the  the trustees of KPS have yet to learn this very important lesson
Actually f***ing angry . As KPS my  HIV charity - that is supposed to support me - I fel has let us down.

As aI feel inclusion comes along with support or indeed is a HUGE part of support as I and my husband live in Cornwall with HIV we shoudl have ben included, consulted and ben part of this decision as we are some of those this charity is supposed to be supporting here in Cornwall.

But recently this charity was awarded 250,000k

First I heard of it was when I was asked by the BBC to comment on it??
As we were NOT. NOT at any time consulted at all . Nor was anyone else I personally know in Cornwall who lives with HIV consulted, or even told??
What is going on here?? Is this OK, no it is not at all - well not by me.
And we  have certainly not been consulted about what this money was applied for or where this money will be spent??
I had never even heard of it in fact until someone  Radio Cornwall rang me and asked me to comment? Sadly even Radio Cornwall got it wrong as they said this money was awarded to ' get those with HIV in Cornwall back to work'
I almost had to laugh?~
  • The concept of going back to work a full week is really out of the question for me and indeed most I personally have met in Cornwall who live with HIV
  •  I am NOT for a minute saying we do not want to work , those of us that live with HIV in Cornwall my want to but can not  . 
  • This is for another blog post for me to explain why for many this is an impossibility for me, my husband and many to now work full time

But actually the guy from radio Cornwall was wrong, it was not awarded to get us with HIV 'back to work '
Apparently it was awarded to do this :

The first strand of the 'KPS Enabling Futures Project' will provide fully funded respite at KPS Trebullom nationally. During the complimentary three day stay participants can access a range of workshops related to understanding welfare reform and how to disclose their HIV status to others, including skills workshops. Participants will also be able to access a range of complementary therapies and enjoy excursions to local tourist destinations and attractions in Cornwall

In addition KPS will be providing children's Summer Camps for children affected by HIV nationally. The third strand of the project is to provide a better understanding of HIV through an extensive HIV awareness training programme for local schools, statutory agencies, businesses and the general public throughout Cornwall and Devon.

I had to say to this journo I had no idea what this was about, or even what charity had got this money, or what for?? As even as someone living with HIV in Cornwall I had no idea and had not been consulted at all so I simply just did not know ??

As in fact KPS,  they never bothered even to tell me?
OK you may think? Why should they inform me or my husband?

Or why inform my 3  friends and 6 others I know personally and many more I know of, that will not be named but also live with HIV in Cornwall.
What may you ask does it have to do with us? Why do we care?

Actually a whole lot.
As if we live with HIV and in the County of Cornwall and the only charity nearer than a 2 hour drive from us has been awarded 250,000k we need to know about it and we want to have a say where it is spent.
Yet when it was awarded it was assumed by the media that I knew all about it ??
As Radio Cornwall and the local TV news phoned me and asked me to comment but I said I just could not as I had to say I did not know , as they,  KPS, simply had not told me??
So how could I comment if I did not know?? And how could I if I not know .  I a local person living with HIV in Cornwall? I did not know anything about this? How good was that??

They had not told me, someone that lives with HIV in Cornwall, or my husband  and both of us are 'supposed ' to be a KPS volunteer??

They had not told us , consulted us or involved us in any way
Thank you so much KPS
I have a profile with the local press that you seem to ignore.
So I think when asked to comment by the local radio, TV etc , I really think you should have a least told me ???

I guess on one hand as I have HIV am only supposed to be what they call a client so I do not figure

And I so hate that name ,and I am no ones client. But this is what that charity call us both!!!
 Yet both me and my husband are also registered volunteers with them ....... Believe me we have done our time over the last year or so supporting others when we can.

Of course I can not go into it but we have done what we can . You can not have it both ways
Either we are volunteers and you consult us, or we are not

And anyway you should be consulting everyone not only those who are not volunteers but what you sadly call clients.

Oh come on KPS, most of your trustees are positive? Where are you at??
Really where are you at?? So trustees are not clients but us that use your services are - double standards and total disrespect comes to mind

And also I have been in the local and national media often - so why do not KPS use what I can offer ?
But you can not be bothered to tell us, or involved us KPS - well your loss? I am so angry

But we are of course only clients and those with HIV are not consulted or important - thank you so much KPS

Friday, 17 February 2012

My Birthday DinnerTonight 2012

After a few years of total hell, things are looking up for me and I have my new friends, in part, to thank for this.

Tonight I am going out tonight for dinner in a really fabulous place, with Barry, my lovely younger sister and 4 other good friends.

The meal is in a very special place. A small castle which is on a hill and overlooks miles of Cornish countryside and the sea, where there is no electric light so the food is cooked on gas and served in candle light and their are hardly any tables so it is very exclusive.

I often walk up on that hill but have only ate in the castle once before as can not usually afford it. The castle itself is considered a folly as it was first built in 1379 as a chapel and later converted to a castle shaped hunting lodge in... the 17th century by a rich family.

But there have been fortifications on that hill since the iron age and before - a very special and magical place. I am so looking forward to it.

See you all there at 7pm
Love you all

The Suitcase Singers

Today is my Birthday and I am going out tonight for dinner in a really fabulous place, with Barry, my lovely younger sister and 4 other good friends. I am so looking forward to it.

Things are finally looking up since the last few years since my diagnosis and I have my friends partly to thank for this, and my own personal resilience and survival skills.

I am so lucky that since going through total despair at some point due to the fact that since my diagnosis, and at a time when I most needed friends support I found myself for the first time in my life without any friends, that I now have good friends.

This was partly because just co-incidentally  at the same time as my diagnosis 4 years ago my few good friends moved from the area, three abroad out of the UK, others out of the village and too far away to keep in regular contact or their lives moved on as because like mine their children had grown up and many left home.

But for a long time I also became isolated and friendless, which was  in part due to HIV.
As those that were still around just stopped relating to me or coming round or calling and I know that this was for many due to us finding out we were HIV positive.

This was not always malicious or due to direct discrimination. A lot of the time it was because they just could not deal with it themselves and many find it very difficult to have a friend with cancer and can not deal with that, but to have a friend with HIV, and one like me who went open about being HIV positive, was for many just too much to deal with.

I also found I could not make new friends.
This was, I so agree,  partly because I was very needy in terms of needing friends and it showed and put potential new friends of women around my age off. But also because I refused to hide away in shame because I know had HIV and would try to treat it just as any other illness.

So when other women mentioned the sorts of illnesses and conditions many at our age start to get, arthritis ( which I also have ) breast  and cervical cancer and treatment etc , I would talk about my HIV just the same as they would talk about this as I refuse to treat HIV any differently.

As I have often pointed out over 70% of cervical cancer is caused by  the virus HPV, which is also sexually transmitted almost exclusively. Yet we all go for our pap smears and if you have cervical cancer and especially if you are having treatment most women will talk about this to their friends or even just acquaintances that are women, if the subject of health comes up.

I just tried to treat HIV the same.
But I cannot tell you the looks I saw on others faces when I started to talk about my HIV diagnosis, how ill my husband had been and the treatment.

And the memory of being directly snubbed by many women I was trying to make new friends with at that dreadful time will live in my memory for the rest of my life.

I especially remember the choir, Suitcase Singers, that I joined shortly after my diagnosis and before I realised how people could react to someone openly HIV+.

I did not join this choir solely to make friends, I truly love to sing,  I may not be able to sing? But I still love to sing.

However I also was trying to be proactive at the time and meet more women my own age in my local area, so I joined this and a few other groups where I may meet them. But as I was only just on HIV meds, still feeling very sick and unwell especially in the mornings this took a LOT of effort on my part.

I did not actually tell everyone directly at first in the Suitcase Singers  about my status and only in fact mentioned it later for a while when women in the choir talked about their own brushes and struggles with illness. But I had done an interview shortly before I joined the choir for a local community radio on HIV and being diagnosed HIV and the presenter, who seemed OK at the time, also joined this choir when I did. She already knew the choir leader or seemed to and other women in there and I cannot prove it but I think she told people there that I was HIV positive, as things were  'not right ' from the start.

If I am wrong and she did not, I truly apologise and will not mention her name. But even if she did not , she was a big part of that choir and her own attitude towards me was not the best. She is a lot younger I have experience of life beyond many and I am no ones fool yet I felt patronised and dismissed by her - and I know this was happening, this was not my imagination for sure.

This choir the Suitcase Singers was mostly made up of women around my age or a little younger and we would go for coffee after rehearsals in the cafe under the  rehearsal room at the Zed Shed  and and everyone else would be in groups chatting away and I most of the time, and from the first, I  would be on a table on my own.

There was even a women there from my own village of Porkellis for a while, and I know people who know her and I know where she lives. But she sure snubbed me! She was fairly new to the choir at the time and I could see on her face when I sat next to her, told her I lived just down the road from her, she just simply did not want to be associated at all with someone that the rest of the Choir snubbed!

I guess she does not know what I did for the village of Porkellis?  Or care?

How I spent years raising money for services there, how I was chair of the Porkellis Village Hall Committee for over 10 years, have now lived there for over 20 years, ran many events in the village, was known and in the main l was once liked by all.

But your past achievements and reputation count for nothing to many when you are diagnosed HIV + I have found

I agree I was also in a very bad way emotionally when I joined the Suitcase Singers, and I did bring some of this on myself as I just wanted to be accepted and could not deal with it when I was not

HIV is a very hard diagnosis to deal with. My moods and emotions were, I agree, hugely up and down and being felt unwelcome in this choir every time I went was not helping one bit!

And due to this while at a choir gig, where  my husband came with me for support, but was in a bad mood himself - he to had a LOT to deal with and he did not like the way I/we were treated at this gig by the rest of the choir. He could see very well that no one wanted to talk to us ( Barry is nobodies fool) and no one sat with us in the pub after the choir and he felt very snubbed too.

But I wanted to persevere - but he was not supportive about this that night as his view was 'these people are not worth this' just give up and forget them'

And I basically - and much to my regret  now -  But I lost it as I so wanted his support that night in this and told him to 'fuck off' if he was not going to support me in trying to be part of this choir I so wanted to be an accepted part of .

We were sitting  away from the main group of members at the time and this was directed, and not loudly either, to my husband and my husband only!

After this I realised that I was so not accepted and welcome I tried to  be proactive and tell those in the choir and and the Musical Director in a group email that was going around choir members at the time a bit about my diagnosis of HIV, how we got it, what it was like to live with the drugs and how distressed I was at that time.

I thought if they knew the background the choir members and musical Director Claire Ingleheart may understand me better and be a bit more accepting - some of whom have other illnesses , conditions and disabilities.

 And I tried also to be very supportive about what they face. So  what I wrote in this group email was not all about me. I wanted to support others in the choir to that I could see were also struggling for other reasons. One or two were in a wheelchair and could not go to some gigs as there was no access, others I knew had mental health issues and I tried to support them too.

But this was a BIG mistake!
Claire Ingleheart told me that I had no right to write anything on that group email and certainly not to share this 'personal' stuff. That the email list was just for her to tell the choir when the gigs were and not for anyone to interact!

I pointed out that she had included all the emails of all the choir in every email and not blind copied them,  that made it a group email so I had no idea it was not a email sharing list. And I had honestly thought that part of the purpose of this email list was for the choir to interact and get to know each other better and support each other with any difficulties we may have arising out of attending the choir!!

But this was not so , according to Claire Ingleheart,  and I quote ' this is MY choir and not a community/therapy group' and basically her word goes!

Well I had also, up to then thought it was a community choir and community groups of all kinds in my experience have as at least part of their remit , to be therapeutic to its members.

I honestly thought this was a community choir with partly a therapeutic content as I could not see how few but those who were unemployed, or lonely and isolated, or disabled, or had mental health or other issues or were ill, or were isolated women with young children would be free to come to a choir practise on a Thursday weekday at 9.30am???

It did not occur to me at all it was a private choir and her own personal way of making money !!!
In fact I thought it was a community choir backed by Arts for Health Cornwall as many of their groups meet in the same hall as the Suitcase Singer -

Sadly I got that VERY wrong as well! But as I was not told how was I supposed to know this was a private choir and not a community choir with partly a therapeutic aim??

It is fine to make money by running a choir but I wish it had been made clear when I joined!

And she also added another member -who I found out later was  a close friend of Clarie's - overheard me telling my husband to F off at the last gig and told Claire Ingleheart. Only it was reported that I said this to a stranger?????

She then said due to this and my 'inapropriate' emails about 'personal issues' to HER choir

And I know what she meant by that is I had mentioned HIV and that it was sexually transmitted to me???? 

And because I had used a swear world while at a gig to a strange man!!!

The person who passed this on to her had not even bothered to work out it was my husband before they told tales of what was said quietly in a personal conversation between me and my husband of over 20 years!!!!

Claire Ingleheart then asked me to leave the choir as she said - I was not a suitable person to represent 'her 'choir!!

But no understanding of how I had been snubbed by her and all others and for many months and what this can do to a person?

She phoned me to say I had to leave but I fought this - and I also bent over backwards and profusely promised to try very hard just come along to the choir, not talk to anyone, and then leave without socialising, except to be polite with the others.

Can you understand how THAT felt ? But I agreed as I so wanted to stay in the choir and she kept me in, but I knew she did not want me in 'her' choir at all .
From that day on I knew my days were numbered in that choir. As I just felt so unwanted and that I was being 'watched' by Claire - and I have NEVER reacted well to this - who does?

How can a person use their power in a situation so badly to kick someone when they are on the ground?

I am afraid after that, for a while, I tried but still felt unwanted and sadly the devil in me then took over ..........
How dare anyone treat me like this??

So I mentioned HIV at any occasion I could!!!! After all it was obvious no one wanted to know me, and that I was being directly stigmatised by some , so what did I have to lose?

Actually it turned out I did have a lot to lose in terms of belonging to that choir.
As what I had to lose was not being welcome in the choir, that I so needed to be a part of.

I had already been asked to leave due to incident when I said the F word to Barry at the gig,  which happened  long before I started getting sassy about the way I was snubbed by her and most in that choir, but I fought this.

However later when I had to have time off from it due to my husband getting Prostrate cancer and he undergoing treatment for it in Derriford Hospital, which is in Devon over a two hour drive door to door for us so my time was limited as Barry was trying also to run a business and I was helping him and I was battling my own fears, and for the second time in less than 3 years as I already nearly lost him to AIDS,  that I would lose him ...............................

When I tired to go back to the Suitcase Singers Claire Ingleheart said in no uncertain terms I was  VERY unwelcome.

I may not have been welcome as a person there, maybe I just did not 'fit in' but I know that it was in part my HIV,  also because I was needy. Anyone newly diagnosed with HIV will NOT be themselves and we deserve compassion. I never got any from anyone in  that group.

But I thought, and still do that Claire Ingleheart is a very talented musical director and I loved singing in that choir and I was devastated.

I truly felt kicked when I was down.

I was also devastated that Claire seemed to think I was so 'unacceptable' that when she came back she talked to me like I was some kind of stalker and someone who was dangerous to know .
I agree I was an ass. I was traumatised, upset, very needy when I joined that choir.
But conversely no one, certainly not Claire Ingleheart gave me any benefit of the doubt, tried to find out who I really was, gave me the time personally of herself or the time  I needed to adjust 



Her reply when I tried to go back after the break - and this is a transcript - Judge for yourself: 

   Dear Claire

I wod like to come back to the choir, but  am worried you will not want me to come back to your choir, now I have had a break and I want to come back -
Suitcase Singers - in the Zed Shed Penryn ?

So I will have to accept it if you say not and I will accept this as I accept totally I inadvertently caused you problems because I was so very silly said the F word to my husband while on a performance and stupidly tried to tell others in the group the total hell of what I am going through re HIV.

I am so sorry that I did this , I have leaned my lesson, I will never again But at this time I was trying to treat having HIV as you would having breast cancer or gyny cancer - as I am not ashamed - but sadly

HIV, is not yet accepted or OK to have
I am so sorry - I will if you accept me back? If you do I will never mention I have HIV , not ever again

So I am sorry but, I am not , or ever will be a conformist, or live to what others expect and also I stupidly tried to tell those - and you too what was goign on with me ...basically the horror of finding at over 50 years old I am living with HIV even though I have NEVER once had sex with anyone but my husband since before 1994

It was a HUGE and such a BIG shock !! as you can imagine???

But I so promise - I may not be able to sing ?? well not more than bass - but I so love you .......really Claire you are lovely...and your choir is too
Please have me back \???
I do so love your talent/work and at the very least I do so know and I do so appreciate how talented you are

No reply so wrote again ...............
Claire - I so miss being in the Suitcase Singers and so want to come back, can I?

I stopped coming because things got so very hard for us , we let out holiday lets ( Yurts: and our facebook page )

We do this to make a living in the summer but because my husband was diagnosed with prostrate cancer and I had to nurse him through his radiotherapy and I also I was diagnosed with avascular necrosis both in winter this year I had to just concentrate on what I had to do to make a living and I also felt that I was unwelcome in the choir as I was stupidly expecting personal support for my situation that I would not get and was inappropriate for me to ask for.

But I have moved on and no way do I expect this anymore, all I want to do is come once a week and sing!!!

I am sure you have no interest in this and I am only mentioning it to say why I stopped coming - and to ask if I can come back??

Her reply ............

Dear Verity,

I am very sorry to hear that your husband has not been well and life has been hard for you. However, I am sorry to tell you that you can not come back to the choir. Please do not attempt to contact me again. I wish you good health and peace and thankyou for accepting my decision on this matter.

( she can not even get my name right?? I mean that little? Yet does she relaise what the Suitcase Singers mean to those that go.

I know she is a busy women but perhaps she should??

And that reply was like I had stalked her. I had not contacted her for over 6 months at that point except to drop her an email to say I could not go to the choir for a while)


 Sorry but it hurt Claire, a whole lot to be considered persona non grata by you or anyone when all I did I was make a mistake and joined your choir when I was VERY needy and trying to adjust to recent finding out I now live with HIV which is a HUGE and terrible thing to discover.

And all I wanted from you and those in the choir at that time , or any group I joined then, was a bit of support, understanding compassion and friendship

I knew you would not have me back and never liked me or wanted me in the choir but it hurts a whole lot to have it confirmed>~
Talk about being kicked when you are already down and being offered no helping hand to climb out or a ladder.

That is how it has been for me everything I have tried to do to get myself up again since I was diagnosed HIV+ so I did not expect anything else, I expected you to turn me down, so it should not have hurt as it has as it was what I expected.

~Many times over the last few months since things have improved with my husbands health and I have been getting myself back together I have considered just turning up on a Thursday morning and my friends who know how much I miss the choir and wanted to come back urged me to do just this. Two offered to come with me to support me if I did. Also my husband who can not sing a note has offered .

But I felt it unfair, knowing what you probably feel about me (which my friends and family do not understand at all as they just do not see me in the way you probably do )

So I felt it unfair to do this to you and not give you the chance in private to tell me if you did not want me back and would be unfair to turn up if you felt you had to ask me to go, not just on you but on the rest of the choir

So this is why, after much deliberation, I found you on Facebook so I could contact you privately and message you and ask you in private.

I have no barriers of making a fuss in public, as I am sure you well know, but I know you do and also it would be unfair on others in the choir who I realise also many of them too have needs and are struggling - so I decided to do it this way out of respect for you and all those in the choir

However, as much as I was expecting it, it still hurts to be basically told I am not welcome and to go away and never even contact you again.

But despite this I liked and really admired you, and I still very much do.

As despite my being in a very bad place when I joined I really loved singing in your choir both because you are fascinating to watch at work and you have a very real and very valuable talent to get the most out of people vocally, even those vocally challenged like me.

And you also have a magnetic personality which draws people to you and people including me although I failed so miserably - want to be noticed and liked by you,

But I am not sure you are a very nice person at all or at least not a very tolerant or compassionate one , well probably that is an huge assumption and a wrong one, just based on how you have responded and interacted towards me, as I am sure you are to your family and friends and those you like and suit your class and outlook on life very compassionate and caring, but you certainly have not been at all towards me.

I guess you see me as just too difficult a person to bother with or have anything to do with even once a week in your singers, and someone you do not want to be associated with as I am, needy, coarse, have HIV and an open about this as I am a HIV activist and I want people to know the realities and that anyone can get HIV, and I am working class and do swear now and then etc and a bit - or a lot - of a liability and all you care about is your professional reputation when it comes to the choir and have no thought of how important it is for some of us .

It was very importaint for me, even though I was in such a bad place I could not conform or keep my mouth shut and my needs to myself at the time, it was still very important and I only stopped coming because my husband got very ill and I emotionally collapsed - something I was heading for fo a long time and had to happen at some point.

Sometimes you have to reach rock bottom to climb back out

Actually the impression/assumptions you have about me are quite wrong about me also. I am working class and do swear, the f word is nothing to me as it is part of my culture, but I am also very educated as I climbed out of the gutter and got a teaching degree and I am very determined in what I do and I can be an aset and you may have been able to help me to sing but you never brought out who I am or saw or used my assets and skills ( I did offer i.e photography, digital imaging, advertising , teaching, networking etc - so we obviously dont either of us see who each other are and on your side you have no interest in finding out

However whatever else you are a very charismatic and talented person and for that reason it was a very great pleasure to meet you.

I really will go now - having had my say

I'd block me if I were you. Then you can guarantee I will never talk to you again  all the best, Veritee - not Verity

Actually I did write again - I am afraid I got assy - my downfall is that I do not take being regected and so horribly and with so little empathy or any understanding and form someone whose Choir I had gone to for nearly 2 years at that point. And paid money I ddi not have to go.

I think I said to her ..................

o   How dare you!!
Who really do you think you are to talk to me or anyone like this???

'Please do not attempt to contact me again. I wish you good health and peace and thankyou for accepting my decision on this matter.

Up your own sweet ass comes to mind

Tuesday, 14 February 2012

Well it is Valentine's day again???

Valentines day should be a good day, especially when you have been married as long as I have and love your husband as I do. But for me it is now such as sad day.

As just before midnight on the 13th Feb 08 - 4 years ago, my husband took his first HIV meds and it hit me like a hammer that HIV would be a part of our lives from now on and forever
and I sat with him

So valentines day is always be a very hard one for me as 4 years ago today Barry took his first HIV meds and it really hit me that HIV would now be in our lives and a huge part of our lives - and forever

Poor Barry....
As this morning 14/02/2012 at around 6am he did the devoted husband thing?? brought me a card saying 'to my beautiful wife' and one lovely red rose ............
But sadly he was greeted with floods of tears, tears that I have been in ever since today!! Oh well that is how life is with HIV 

And also that is life and marriage, the rough and the smooth, and in sickness and in health certainly meant more than I, or he,  ever thought it would !!

Ironically that night 4 years ago we ended up making love. As the clock struck midnight on Valentine's day no less.
Not surprising as we had both been too ill and for so many months to do anything but jsut try to survive.
See my Diary of that time:

Barry was especially ill, far more than I, but with hospital ttreatment he was now, by Valentin's night, 2008 a bit better. 
In fact maybe for over a year we both felt to ill even consider sex. But on Valentines day in 2008 was not long home from hospital and we were both feeling slightly better and good sex has always been a part of our life together

Is it not ironic that it is mainly through sex you get HIV, Yet for us sex became out of the question for a while once we started to become ill in about early 2007?
But that night 4 years ago we did, for the first time in months, make love it was lovely I will always remember it .

But also I will always also remember that night as the night I realised HIV was a part of our life from that day on.

Saturday, 4 February 2012

Criminalizing those who live with HIV

There is sadly a very worrying trend worldwide to criminalise those with HIV.

This is NOT about those VERY few who deliberately set out to infect others. They do exist, and there are bad in every community and not all that have any illness are nice people.

But this is so very very RARE!

This post is about criminalizing ordinary men and women who live with HIV. People that do not want to infect anyone and often do their best not to.

Many who have fallen foul of this trend have been completely open about being HIV positive.

But for various reasons sometimes  not all may disclose, either in general life or even when they have sex - but they do protect their partners

Before you judge............

Realise THIS is NOT a simple issue or as black and white as you may feel if you have not looked at the issues.

And if you have any interest, please look at these links  - and learn.
I will add links to this post as I find them.


LINKS - Criminalizing those who live with HIV

This first link is a very powerful video about criminalising HIV and those with it and how unjust it is and perpetuates stigma. And how it particularly affects women.

It is about the US, BUT this DOES happen here in the UK and all of Europe. Perhaps not so often but believe me it does happen

Ten Reasons to Oppose the Criminalization of HIV Exposure or Transmission

A very interesting collection about the discussion about criminalisation

Countries questioning laws that criminalize HIV transmission and exposure

Alice Welbourn -

Is a briliant social scientist from the UK who also lives with HIV herself and thesedays  specialises in the criminalisation of those with HIV especially from womens perspective.

She in fact is British, and lives relatively not far from me in the South West of the UK  and I have met her a few times and seen her speak on the subject.

I met her through PozFem for which I am very greatful And will be greatful I met all the wonderful women I met through PozFem UK

( Sadly - due to the reccession I guess? -  PozFem no longer has the money it needs for us to meet up. This is a great shame)

On a very personal level as we live quite close and are of simular ages and perhaps backgrounds and perhaps lifestyle I did so very much wish/hope we could become friends and had been able to meet sometimes outside of PozFem?
But she is a very busy activist and renowned social scientist and I am very small fry, a very newly diagnosed women, a budding HIV activist but one that will mostly have to confine my activities to my local area of the UK and online as unlike Alice I am disabled and feel unable to cope with much travel. And one who is only now really learning the issues and the huge complexity of them.

But I will always admire Alice Welbourn, and |I will always follow what she has to say and be very greatful we met.
She probably is one of the foremost experts on this subject in the UK

Try these links below but also Google 'Alice Welbourn' and read her papers and presentations.

New laws to fight discrimination will do little to protect women diagnosed with HIV - Alice Welbourn
The Guardian,

Women with AIDS:Commonwealthcasualties

HIV & AIDS  - a book Alice Welbourn edited

Behind Bars: Life Stories of People Affected by the Criminalization of HIV

More life stories of people affected by the criminalization of HIV

Submitted by - Michèle Claudine Meyer thank you Michele
10 reasons to oppose the criminalization of HIV exposure or transmission

One about the other side of the argument - but also supports the argument not to generally crininalize those with HIV - a blog post by someone I know online who also lives with HIV

Whenever I have time I will add more links to this post.

Criminalization of those that live with HIV is one of the most important - and potentially damaging - issues all of us that live with HIV worldwide face today.

Just my humble opinion!