Thursday, 15 August 2013

NHS lift ban on HIV+ Staff - is this good or not?

England's chief medical officer, Prof Dame Sally Davies

Today it was announced that In the UK they have just lifted the ban on medical personnel doing certain tasks in the health service. For instance surgeons, doctors dentists, nurses etc living with HIV could not perform certain procedures and operations, nurses also who live with HIV were banned from some tasks and jobs etc.

This has been lifted so they can now do all things within their training.

It has been replaced by regular monitoring to ensure they are taking any medication properly and their HIV is controlled

On first though it seemed great news. But have some worries too as employers in the UK are very good at getting round anti discrimination ruling. Will this mean that more HIV+ qualified medical people will be employed and stigma lessen for those who are already employed by the NHS, or will it in a convoluted way, increase it if more already employed ‘come-out’ and more apply?

My doubts arise because I know there is underhand and hidden discrimination happening in all areas of the workforce in the UK for those with HIV despite anti – discrimination and Equal opportunity legislation, that has and does stop those with HIV disclosing their status at work.

Therefore I apologise if I offend  but I have a suspicious mind when it comes to how discrimination works in the UK in employment and know to my cost how a lot of anti discrimination and anti stigma is just lip service as ways can always be found around it as the legislation is full of holes and maybe deliberately so?

In theory NHS workers of all categories that live with HIV will now be able to do all tasks they were trained for, including procedures and operations. This will mean they will be ably to openly apply for jobs that involve such tasks without fear of discrimination that has beyond doubt been happening.

For instance even at the level of it made it impossible for people with HIV to do certain jobs within the NHS such as dentistry, surgeon even phlebotomist etc. Many have lost there jobs in the past or not been able to find work if diagnosed. HIV healthcare workers will have to be on ARV medication and have an undetectable viral load. As "With effective treatment, they are not infectious."

This looking at it positively, may be very good news in terms of de-stigmatising those who live with HIV.

However, even before such effective treatment existed with universal precautions that all in the NHS use the chances of getting HIV from a health practitioner was hugely remote and in fact has NEVER happened in the UK!

However it will have to be seen what the effect actually is?

As in fact despite the legislation being as it was, and the NHS thinking they only have fewer than 200 staff that will be affected by this, it is anecdotally the case here that many more workers within the NHS who have direct contact with patients and already do these until now forbidden tasks actually live with HIV then just 110!!. And these are those that know their status. There are of course many more who do not yet know their status but eventually will.

I have met personally, locally and through UK activists groups HIV poz nurses I have been too Nationally. Only one I have met was known to be HIV poz by their employers. Most it was not known because they were diagnosed after they got their job, so there medical records did not say they were HIV+ at interview. As here Anti Discrimination and Equal Opportunity laws also apply to those with HIV. But there has been a certain amount of 'underhand and unseen discrimination going on which worries UK activists more in some ways then when it is out-front.

As for some jobs, medical, social worker and teacher, youth worker which was my profession,  and other jobs, mostly those that work directly with children, young and 'Vulnerable' people, you are asked to give permission for them to see your medical records when you fill in an application form.

You can request they do not see them unless you are offered the job and after interview when your references are being taken out as they are not supposed to discriminate due to any illness or disability. However in practice if you do ask they are only seen if and when you are offered the job, it is assumed you have something that may interfere with you doing your job, so basically it is unlikely you will be hired or even interviewed. So most let them see medical records before interview and if you do have HIV quote the Equal Opportunity act 2010 at them and hope they decide to interview you anyway.

And if you did get the job, in some jobs, special exemptions to what you can do can apply, that overrule on a ‘health and safety’ grounds some of the intended ethos of anti –discrimination for those sick and disabled that is covered mainly by the Equality Act 2010.

Like medical jobs where the Chief Medical Officer can and did make special rules applying to medical staff with HIV, social exemptions on what you can do can apply.  There are others applying to other jobs usually under ‘health and safety’ justifications.

Also there are some inbuilt ‘limitations’ on what a disabled person can do or be allowed to do under the act

A difficulty as I see it in anti stigma and anti discrimination for those with HIV and other conditions in the UK is that the general public think we are well protected in law in the work place and in our lives, but there are at times ‘built-in’ ways around it or ways around it can be found, such as asking for medical records before you are offered certain jobs at application, but allowing applicants not to let them be viewed unless off offered the job, but then the employer deciding you have something that will impact on your work should you be offered the job, so  and not interviewing if you are not prepared to let them be viewed.

I see this as a very convoluted and built-in ‘Get out Clause’ for employers to get out of the Equal opportunities act!!

However there is also evidence that these rules are also ‘unofficially’ overlooked as well. A nurse I met said she had an incident where she had to disclose and nothing was done, it was not officially registered and she continued her duties the same as before. She said she know several other nurses the same.

That when this announcement was made it was said it only applied to 110 medical personnel within our health service, because that is the number of HIV+ medical staff with direct contact with patients within the NHS that they know about. This is hinted at in the reports today

But actually there are far more, that for some reason or other they don't know about. As well as this nurse I had this discussion with I have met personally 2 others and one retired.

So I am now wondering if due to this change of policy if HIV+ medical staff will now disclose to their employers more, and what will happen if they do?

Will more who are qualified apply open about their HIV status for jobs they were restricted form doing in the past and will they be interviewed and employed?

Will this be a positive thing, will it lessen stigma or in a roundabout way increase it?

Sorry to be sceptical, but I think only time will tell.

Thursday, 25 July 2013

Another dream hits the dust

The sad tale of my last desperate attempt to do a BA

I now realize that I was stupid to try as  if I want to go back to education I need to do an access course, and this indeed is what  this is what this guy suggested .


This guy interviewing me is called Jamie Hanson – head of the Contemporary Creative Practice.

I gave him the chance to suggest that before I went to the interview yesterday for this BA top-up course.

As  I emailed him before I went and over 2 weeks before to say that if in his view I was not qualified to go on this course please do not see me on the basis that I am. I sent him pictures of my work, a dissertation proposal and my qualifications.

I asked him to be honest, to tell me know and by email if there was no point in my coming for an interview for this course and suggest if there was no point what the alternatives were.

But he phoned me and said of course I was qualified via my HND, my teacher qualification, my certificate of Education from Anglia Ruskin Uni ( only did that a few years ago ) and my experience.

And he said  of course come to the interview for this course. He also said and I quote..................

‘You more than  meet the entry qualifications’


But when I got there he did a number on me.
In he was never considering me for a moment for this BA top- up, nor had he read the files I had sent him via email or looked at my work i had provided links to.

And was from the first trying  to manipulate me into agreeing this course was not what I wanted to do - when it was - and suggested a foundation degree and when I said I could not possibly afford it and why,  an access course.

I would have been fine with this had he said before I got there that I was not interviewing for the BA as I was not qualified or good enough or academically capable enough to do it and so if I saw him at all we were just having a chat about my options, if he had said that on the phone I would have been aware what his agenda was and would have had the information to decide to go and see him, or not.

But on the phone , he did not say this. His words were something like ' you are more than qualified to do the BA, please come along for an interview with your portfolio '

So I trooped along with all my stuff - had to take Barry to help carry it as a lot of my art is large - for what I thought was an interview for the BA and thinking I had a chance. 

Only to find it was not. That his agenda was to persuade me to either do a foundation degree or an access course - with no guarantee if I did either I would get on the BA That is fine, I would have accepted this and not gone to the trauma of going to an interview as  he could have told me that on the phone.

Why lead me to believe I was  qualified for and interviewing for the BA top-up if I was not??

Anyway the point is, he could have told me on the phone and I simply would have accepted it and not gone

As there would have been no point!!

 As I simply do not have the money to do a foundation degree and I would certainly not have the money to go on an access course, then a foundation and then a BA. This would cost between 16 to 18k – perhaps more and  I simply don't have it and never will

I had worked out that I just about had enough money that I could scrape together to do this top up BA that he assured me on the phone I was qualified to do - this would have cost about £3000 payable in three installments and I worked out that with a lot of scrimping I could just about manage to pay this.

But that was all, there were no other options for me due to the finances.

If he had been honest on the phone I would not have gone, and would have just left it there

I guess he may have meant well??? He probably thought he was doing me a favour in seeing me at all and thought he was being helpful in suggesting ways to get to the stage I could do a BA

But the facts are I can't afford it, it was the top up BA part time or nothing.

I felt he was not honest and I felt humiliated as had he said this on the phone I would not have gone.

I did try make this clear in an email that I was only interested in the part time top up BA, and asked him not to see me if my doing this course was not possible.


He should not have done this. He should not have seen me. If he had read what I sent to him he probably would not have, but it was obvious he had not!

I guess his concerns were just bums on seats and not to turn away a possible student, and to just get me in and then persuade me that the BA top-up was not for me ( or I was not ready for it) and to go on an access course or a foundation degree.

But he was dealing with a 60 year old adult who in fact used to lecture at that college !!! Yes I used to lecture there!!

And I know how it works and what it costs - not a 18 year old fresh from doing A levels.

And I would have had to pay for myself - long story why.


But basically no way can I come off of DLA and ESA and get a student loan as if I do this I would have over 20k in debt at 60 with no hope of ever paying it back.

I did look into this just to see what the possibility was and found that if I died with that debt, it would be deducted from my estate and if I died before Barry this would mean he would have to sell our home to pay it and if I survive Barry my daughter will have to pay it out of my estate.

My daughter  has a student loan herself she is being charged interest on./ It is not for the whole whack as she did not finish her degree but went to work as a chef. But she can't afford to pay back her own student loan.

I can not selfishly disregard the future welfare of my only child and get a student loan knowing I can’t pay it back as at 60 and disabled I am unlikely to ever work again and thus landing her with a debt of over 20k on top of her own student loan.

I did in fact make it  clear in the email correspondence I had with him before the interview that I was only interested in the top-up BA.

I did not go into the financial details as that is my business, but I did at this interview and  yet he continued to suggest an access course and/or a foundation , even though I had said it was financially not and option.Also if I got a student loan, which is the only way I could do what he was suggesting, the access course, followed by a foundation degree - which would take at least 4 years part time ( I was going for part time which doubles the time it would take because I know my limitations and I get too tired to go to college 5 days a week as i suffer chronic fatigue and could not do a full week)

So I just could not do this and I would be in my mid 60s when I left college – probably 66 or 67 by then and then there would be no guarantee I would be able to do the BA top up at the end of it. And worry that in 4 to 6 years I would not be physically or mentally capable anyway.

So when he rang me and said come in to see him for an interview as I was more than qualified on paper to do the one year full time or 2 years part time BA top-up I thought  at least I stood a chance .

And for me financially and physically 1 year full time or 2 years part time that I paid for myself, was my only option


As also if I got a student loan I would be taken off of ESA - which I have fought to get - and it would be very hard , if not impossible to get back on it as by having a student loan to do 3 to 6 years at college - if I could get it anyway at my age??

Would be saying if I can go to college I can work, which I can’t, thus proving I do not qualify for ESA

But you are allowed on ESA to do a college course of 16 hours or less a week – well that is the information I have - so I worked out as this BA top up was dissertation based and only has 15 hours taught lectures in the first term, if I did it part time over 2 years I would be in college less than 16 hours a well so I could do it if I paid the fees myself. The access course and the foundation is taught and even part time is more than 16 hours a week, so I would automatically disqualify myself from ESA even if I felt I could risk getting a student loan at my age

So when I went yesterday I knew this top up BA, mostly non taught (mostly a dissertation with tutor input and much of it I could do at home) was my only option.

I made it clear both on the phone and in emails I was only interested in the top-up BA, but the sad thing is when I got there it was apparent he had not even read my emails properly or taken in what I was saying about my position.

He so had not read anything I said he even asked me how old I was!! Which was in my emails and a lot of why I can’t risk getting a student loan

Yes of course I would have been disappointed if he had said in an email or on the phone I was not qualified to do it and there was no chance, before I went to any interview.

But to go to an interview thinking it is at least possible in theory - that I qualify to do the course I was applying for - and then at the interview it being made plain no way was he considering me for it..............

Made me both angry and I felt totally humiliated and that I'd wasted my time and indeed his. I felt like I'd been hit



Wednesday, 12 June 2013

Social Exclusion and Isolation – HIV or just me?


I have read many times over the years I have been HIV positive that many with HIV suffer social exclusion and isolation. I never through this would apply to me but sadly have realised it now does.


I have no idea how much this is to do with being HIV positive and how much is to do with me, my personality, age, circumstances and perhaps underlying self stigmatising that I am unaware of..
But what I do know it has only been so since I have been HIV positive and is getting worse.

All I know is this is not the first ‘issue’ I have experienced and even during my quite severe mental health and other ‘issues’ as a child till my early 20s and throughout PNI – Perinatal or Post Natal Illness  - I was surprisingly never socially isolated.

Even in the depths of PNI I had at least 3 often more, people I knew I could visit in the village anytime for a chat and a cuppa and feel and be welcome - even at times day or night.
And surprisingly perhaps? I always had at least one main social group I belonged to and other friends and a social life, until recent years.

Ironically when I had PNI, at times I wished I didn’t – only briefly I knew how lucky I was to have friends and a social group that accepted and liked me – as at times when all I wanted to do was rest, not just one but many people would turn up for a visit and my house would be totally  full!!!! But even though it was tiring at times I would not have had it any other way.

I think finding you are HIV positive does have an effect subjectively on how you feel about mixing with other people, or at least it did for me and especially in the beginning.

As hard as I find it is to admit, I did feel or rather fear, that I was someone people would no longer want to mix with. And as it was all new to me had no idea what attitudes would be or if I would be affected by stigma.

And sadly except for the few blatantly discriminating and judgemental encounters with others ( and sadly there has been a few but at least then you know how you stand) I have no way of knowing if I am being judged or stigmatised or if my status is any barrier to my being accepted or liked or wanted as a friend or part of a social circle.

As few would tell you honestly.
An I am afraid although I have toned it down a lot now, I coped with this fear of rejection due to my status by telling any group I joined about it and being very verbal about my status. And I know I was over the top with this. And that nerves, anxiety about being accepted and fear of being rejected made me loud and almost manic at times in new social situations or even in groups and classes.

I have improved, I am still a little like this, but not anywhere near as frantically trying to make friends and be accepted HIV and all, and too over the top than I was 4 to 6 years ago. And while I still share my status I don’t do it in such a pushy, over the top and inappropriate way,  but my fear of rejection means I am not quite there as yet.

But what I do know is apart from one friend, who is also HIV positive, I now longer have ANY regular friends or a social circle, or any friends that I see regularly and my social life, friends get smaller and smaller since diagnosed as people seem to drop out.

And my biggest disappointment was fining that most people locally to me, or even in Cornwall, who are also HIV+ do not want to mix with me on a friendship level. What was the most disappointing were other Poz women.
I do know why, or some of the reasons why.

Few in Cornwall are open about their status. None of the other women I have met yet in Cornwall are publically open about their status or even open to all their friends and family. Not even my only local Poz woman friend. She is open with ‘some’ and I only mean some friends and family, but by no means is publically open. Many have known her for years and do not know her status. Which is totally fine by me. I am not asking or expecting any to be publicly open as I have been.

And on that note, the reason we are friends is she made a leap of faith and believed what I always say – that I may be public about my status and talk about it, but I will not disclose another’s status.

She took the risk, and we have even been in situations whereby she has been there with me and others asking me about HIV or my HIV and they do not know hers, even when this has happened with her friends present.

But no other HIV positive local person has taken that risk with me. I am aware that the fear is that by mixing with me, as I am publically open, I will in some way ‘out’ their status or it will be guessed they are HIV+ too.

I have been told this directly by some. I have also been told I am too loud!! This meaning both that I have too big a mouth in that I talk about my status publically and therefore may talk about theirs and that I am too loud as a person – which is probably true as nerves in social situations make me a bit manic and loud
I did have hopes this would change but it has been 6 years now and I have given up trying.

But I feel very privileged to have met the one local + woman I have as she is a wonderful person and a loyal friend , even if we don’t see each other socially – explained below why not – I have been very lucky to have met her.  

But as to why I am in general socially isolated, outside the HIV area, I am not totally sure? It could be that I am open about my status and verbal about it, it could just be me, my personality – the fact I have always had difficulties understanding social norms and thus am an acquired taste! – it could be maybe a self fulfilling prophesy? And it could be other factors.
I simply don’t know? All I know is despite my husband, I am lonely.

*It has to be remembered that you can be lonely even when you have a partner. Many especially those with HIV have said how luckily you are to have a partner and yes I am and I KNOW!

However I have been together nearly 30 years and much of that time he was away at sea so my friends and a social life has always been important too.

Anyway, humans are social animals and no one person can fulfil all your social needs. Perhaps your very intimate and personal ones and I am very glad that unlike some I do have that – we have that. But Not even a couple is an island. Or rather it is not healthy to be. We need others in our life.
And it has to be remembered that we are BOTH socially isolated and excluded! If one of us was not and had a social life and a group they were socially accepted in and social places to go, the other would not be as isolated either.

Barry is as socially isolated as me, probably more so in fact. The difference is he does not care as much as I do and does not have much interest in going out socially..

But I would like to go out socially with others or even just have a few friends I could pop around to see and I would love not to feel so socially isolated and included.
In fact I would even be happy with just feeling able to pop round in the day to another’s house or they pop round to me for a chat and a coffee now and then. Like it used to be for me once .

While I have to say someone did pop around a few weeks ago but I was late for a class sadly and had to go out, but I don't feel I can just turn up at hers as she still has a child at home, and works and a busy life so I never know when she will be in. But I know I would be welcome and will try to go and see her .

However it has been some years since in general I have been invited to pop around any homes locally

In terms of social events or gatherings,  it does not help that we live fairly remotely and most social occasions we are invited to, if not all, involved driving 8 to 20 miles and are in the evenings and both of us are just too tired most evening to even contemplate that. Some nights we go to bed at 7pm and sleep until 7am the next morning.
Due to our fatigue I am well aware that in part we exclude ourselves socially as we are just too tired for anything but very local events in the evenings.

Most of the things we have been invited to in the last 3 years have been via my friend, who surprisingly goes out almost every night and I am always welcome to go along. But she lives over 17 miles away and while in the day that is OK, at night it is beyond me to drive that far and especially back after and evening out. I feel it would be dangerous, I am just to tired.

And of course while my friend does come and visit me here as I am never invited to anything here, there is nothing I go to nearby to me that she can come with me too. So she just pops round for a few hours and we do not go out any where.

Most social things Barry and I  have been invited to, and that is few,  do not start until after 7pm, most later and we are both often too tired to even move by then!

If the few social things we are invited to now were nearer, in the village or even in the two nearest towns we would, or I would if Barry did not want to go which is likely ,I make the effort anyway.
But sadly all, in fact all, the more local friends in the village and surrounding area we made over the years here have moved out of Cornwall or in Cornwall but some distance away or their lives have changed and we are not part of it and we have not managed to make new connections in the village and locally on the level that we would be invited out by anyone or to their homes.
I have no idea if this is due to our being HIV positive or not as if it were no one would tell us, but I think in part it is. As I have been very public about our status. It has to be a factor even if not the main one.

But I also know it is about us as well. Barry just is not a social person. He is a very friendly person but he is very self contained and has never had or wanted much of a social life., He is happy to occasionally pop round in the day to the couple of friends he has for a chat or chat to people if he meets them, but going out socially has never been his thing.

As for me, I have always been an acquired taste!

I can be prickly and have strong views and while once you do get to know me and like me, I know I am liked, but not many want to make the effort. 

When I was included and meeting people locally and making friends, I had things in common.  A young and then teenage child, having to take her to school, go to activities with other parents etc., I was working and was active on a committee in the village, horse rode and owned horses and met others that rode, I had things in common with others around here and they gradually got to know me.

I also know that younger people would not want to share a social life with us. That it is only those our age or within 10 - 15 years either way, that it would be feasible with. Partly because I could not keep up with anyone younger socially!!

This cuts down the possibilities, as most who have moved into the village in recent years as the older ones moved out have been a lot younger than we are.

But sadly know that there people of our age or older  locally that may also be sitting at home, wanting to be social feeling isolated and not knowing how to make that sort of connection with people. But it is almost impossible to meet these people. Even though willing there is simply no where those people around our age form this area go! Except the pub, and I have tried that and it has never lead to any social connections bar saying hello in the street and I can't use the pub very often at all because if I am their on my own or just with Barry there is nothing much to do except drink , and I can't risk that as in that situation I will drink to much and regret it!

Before anyone says why don't you make the effort!!! Well I do when I have the opportunity. I am always friendly and willing to have a conversation when I do meet local people. But it has to be understood that I live in a village that now has no shop - the shop when it existed was somewhere I met a deal of my local friends. If you walk through the village, walking your dogs or whatever , you rarely meet anyone in the street, most people keep themselves to themselves now, and I have no child to share activities with other mothers.
There is a pub, but I simply do not feel at home there anyway, or wanted there, probably its me, who knows??

Those I have met in the last few years in the village and locally do not invite me to their homes. I can count on a couple of fingers the amount of times I have ben invited, or it I have visited on my own initiative, the number of times I have got past the front door or further than the kitchen. 
I know that some in the village of similar age to us, do have social occasions , parties or go out together .
Because ironically I see the pictures of these on Facebook and through their updates.

I do not want to give the impression I never go out.
Me and Barry often go for a meal, early evenings in the local town or otherwise nearby. Sometimes we walk the dogs then stop of at a pub or café.

I do various groups and classes. Over the winter I have done oil painting, photography and a painting a drawing class and am still doing two of them for another few weeks until the current term ends and will start again in September. I did also go to a painting club which I could not go to recently because my painting classes clashed. But I will go back when they don't.

I have tried a few local singing groups in the last few years, and one was OK, but sang stuff I really did not want to sing - I stopped going and that was my choice entirely, the members were always welcoming to me and wish I could have continued just to be part of singing with others, but I felt I could not. I may explain one day.


But the other two both turned out to be unmitigated disasters!!

Yes I know for reasons at least 50% mine but at least 50% theirs and mostly that 50% was due to the attitudes and remit for running them by the people who run them and it hurt.

Both were a disaster in the end and I realise I can never go to any groups or activities where, competition, ability in the activity and ability to perform at some level they require,  matters more than participation and inclusion.
It seems that singing groups like this are few and far between and I have not found any that sing my kind of music as it seems to me it is so riddled with ego and mainly the ego of the people that run them and make a living out of it to by charging you up to £8 for 'rehearsing' and then don't want you to sing if there is a performance because you are not in their eyes 'good enough' either as a singer or a person!

Sorry so annoyed about my experience with those singing groups!! Even if I am the worst singer in the world or somehow socially unacceptable to that particular group, they were community choirs or groups and as far as I was concerned it should not matter if I could sing , or sing how they wanted

The other groups, classes etc I go to have been fine. But then no one would say you could not participate, even exhibit, if you wanted to, whatever your work is like from an objective perspective. Enjoyment, inclusion participation and learning is what they have been about - not making the leader look good! 

Oh well I have dribbled on for far to long, trying to analyse the reasons it has become this way for me after a lifetime of having a lot of friends and belonging to a lot of social groups that I am now so socially isolated.
At the end of the day I don’t really know the reasons, just that it is that way!

I know if I want not to be this socially isolated I have to try. I am going to have to try driving the 17-20 miles to the few things I am invited too, go out more and try to reconnect with local people, and makes at least acquaintances with people in the village again.

I am going to try!

Update - June 2013

I thought I would update the situation. It is now 2013, we are still together and content to be together.

I rarely write on my blog now, but keep it open because I know this journey is not finished, that one day I will have something to write again.

But for now we take our HIV medications, get on with life and cope with the health problems that have come along, and they have. Some caused by HIV or the meds , some not - Barry prostate cancer and diabetes. The diabetes  caused by meds, the cancer not.
 Me Avascular Necrosis in the form of Kienbocks, which could be med related osteoporosis, which is for definite due to the meds I am on which has been admitted one of the drugs I am on should not have been a first choice for a post menopausal woman as it is know to cause osteoporosis in much younger people than me and I did not have it before - I know that for sure as due to my accident in 2003 I have had bone scans before and this developed 2 years after starting this med.

I also have arthritis and  worsening of my mobility due to my damaged leg. We both suffer chronic fatigue which makes like hard and high cholesterol which is drug caused .
But in the main we continue like many older couples with health problems - I am now 60 he is 61 .

But we have survived and are doing well in terms of HIV. Both of us have undetectable virus loads and CD4 counts above 600, which considering our age and our late diagnosis, is remarkable.
There has been some recent hopeful research that says that those with controlled HIV, who are undetectable and have a  CD4/Tcell count of above 500  have the same mortality risk of peers without HIV

This is heartening to read as previously to this the research pointed to a shorter lifespan, not much shorter if doing well on the meds, but that you could expect between 5 to 10 years less.

However I still believe HIV, or the meds age you. That age related conditions may happen earlier for Poz people than if they were not Poz and for some cause health problems that you may not otherwise have had.

 In fact I know some of what we have is HIV/meds related, and for some of us, me included, but not Barry, being HIV positive takes a toll on your mental health and general wellbeing.

But the prognosis for those with HIV is improving and improving all the time, and with new meds coming on board al the time that are more easily tolerated and less damaging, the picture is a lot more hopeful for us all that have access to these medications. Sadly there are still those, and surprisingly in developed countries like the US even, that do not have access to these meds. But we do and we are very lucky to have HIV now and not 20 years ago.
So for now we get on with our lives. Barry has even started and continues the business letting out a Yurt, camping and a small flat on our smallholding, to supplement his small pension.
The fatigue and other factors sadly limits our social life. I would like to have more of a social life, I am not sure Barry would , he has never ben one to go out socially much, but I used to be a social animal.

However we are living our lives as best we can and supporting each other.

Monday, 8 April 2013

Maggie is Dead!!

A group on Facebook  asked our thoughts on Maggie Thatcher in the light of her death today.

Gosh I had to think about this because at the time I hated her and her policies.

 Surprisingly I have found many on Facebook and Twitter do not know who Margaret Thatcher was nor what she did to Britain in the 70s.
I know this is because any are form other countries other than the UK, but I know about presidents of the US in the last 50 years, but so many in other countries and the US do not know about our Prime ministers and Government and what they did.

I knew quite a lot about Maggie Thatcher as I  worked for ILEA ( Inner London Education Authority) then as a Senior Youth and Community Worker,  basically part of the GLC, I knew Ken Livingstone, well not knew him but went to some of the same meetings with him and saw him around a lot  and The GLC ( and ILEA) conducted almost a war with Maggie and her government from across the Thames from the houses of Parliament, in 'Red Ken' run County Hall.


County Hall is sadly now a Premier Inn and in fact Maggie was directly responsible for dissolving the GLC and ILEA and eventually the selling off that wonderful, historic and public building County Hall basically as a way of getting rid of Ken his policies and his battle with her and her government

Those were the days LOL!!

But the reason I had to think about how I feel now is.........................

I sadly think this current coalition Government is WORSE!!! And in fact far worse!!!


I could go on all day about why  and I may not be agreed with and there  are so many reasons but I will only go into a few.


One is that Maggie and her (ghouls, as we used to call them) was actually comparatively quite upfront in my experience about what she was about and her policies and at least we knew what we were fighting.


She did attack the sick and vulnerable  too but not quite as much as this current government. Well at least not so underhand and potentially permanently and so directly.


And many of what she saw as 'left wing'  organisations and charities that supported minority groups, the vulnerable and the disabled but while some such work suffered we mostly got round that and were funded anyway.  The GLC and many councils and larger funding bodies did not agree with Maggie’s Policies so funded these organisations and charities despite the government. ( as well as ILEA I also worked and was a trustee for a Youth Charity and actually we have really good funding all through the Thatcher years and so did a lot of organisations.

She did very much attack the ordinary worker and their jobs and job/industry infrastructure; privatisation of nationalised industries, services and other public assets, the miners and other strikes, her attacks on trade unions,  cash limits on public spending, cuts in higher education etc. etc.

 I could go on about this and it was extensive and dire  but I want to make a point here about what THIS government is doing and why my view is it is worse and more destructive in the long term.
But this government  to me beats the Thatcher years hands down in cruelty, deceit and insidiousness.

Just look at the dire and un-just changes in the benefit system, the welfare state the NHS - all of which even Maggie did not manage to destroy!!!

Even Maggie would not have dared privatise our NHS, or our benefit and welfare system as this government is in fact doing!

How they are robbing he very poor, sick, disabled  and vulnerable and yet giving to the very rich

And that is not all

But it has been done in a way, is so disingenuous,  that so many do or did not realise what is going on or if they do think it will not apply to them because they are working; or in the case of some disabled or pensioners because they have paid their stamps and are 'entitled.

And they should be and were ‘entitled’ they paid what was asked , kept their side of the bargain, but this government has  not kept its side.

Many partly do not think it affects them because of the way this government have also helped to manipulate the media so they talk about 'Scroungers and Strivers'

Others do not realise because it I has been couched in such a way that what is relay happening has been deliberately fudged under statements like - we have to make cuts, and it will benefit us all and our economy in the end - 

Which is a ridiculous and non-existent division on the whole as it only takes a misfortune, and illness a lost job to become one of the so called scroungers

However it will and does affect them; it sadly affects us all.

This government has made sure no one is 'entitled' any more and the changes will effect all but the very well off who can pay for private health care, have a large private or company pension for when they retire or already have one, have land and/or property and basically do not need the system in the same way as most of us do.

and they are lying as they destroy a NHS and a Welfare state ( cradle to the Grave)  that so many fought for and many do not realise what they are doing .

Even Maggie did not achieve this.

Actually now I think she ( Maggie Thatcher )  was small fry and an amateur compared to this current evil regime

Wednesday, 13 March 2013

Those with HIV too are often those who least support you

These women in this picture have supported me and I hope me them and I respect and like them all  very much  and miss them as it is a long time since I have been able to meet with them.

But in general I just wanted it noted for prosperity that while I know I am living a productive, proactive and as positive life as I can and is possible despite HIV, and struggling an existing disability long before HIV - I was diagnosed with HIV at 55 long after I had become physically disabled due to an accident.

 That I do my best, each and every day, but do not believe, in fact I know I am not, as healthy as I would have been without HIV in my life.

I assure any one reading this that for me at now 60 years old  and  and my husband 61 we do lead a more active and productive life than many we know our age who do not have HIV and this is in spite my existing disability and my husband’s legacy from nearly dying of AIDs when first diagnosed over 5 years ago.

We are both so VERY interested in life. Our life we live to the full.
We are both always active and proactive; my husband runs a business which I help him with. We live every day to the full, we both try very hard to support others – who have HIV and in my case also PNI and those going through the UK reformed benefit system of DLA and ESA - and generally do not make anything more of living with HIV than it actually is.

BUT - It is our stance that it is true that HIV is no longer a death sentence, but sadly we do believe it is a life sentence and does affect most of us physically and our physical health, mental, health and and well being etc.

Living with HIV also affects many people’s mental health.

This is an aspect all to many of us are asooooo ashamed of?
So many of us can not even admit to?

But for most of us it is a real and dire factor for us all- including me!

It is a well known fact that people with HIV have mental health issues statistically more than the rest of the population and NOT because they may have had them anyway, but because of the stress, stigma and other factors of living with HIV.
I think I do very well on that score too, but I do have what I call my HIV blips and what another I talk to has called their HIVers depression or black days.

Those black days and blips certainly affect me. I am 60 now, I struggle each and every day, not with the fact I have a sexually transmitted illness as who cares about that at the end of the day it is not what is important.

What I struggle with is it incurable, it affects my health and well being, it is stigmatised and that I am 60 now and will live with it until the day I die.

Even with cancer I would have at least a chance of a cure – with HIV I do not, so visits to the clinic, blood draws, daily medication (and their side effects) are normal and now  inevitable for me until the day I die.?

I guess it is the lack of control that affects me most.?

That I can do nothing proactive myself to change this, that I already do everything I can for myself and those I support and my husband yet I can change nothing by my actions.

Please do not think I am minimising cancer

A friend of mine who affected my life greatly  died of cancer the day before my birthday 16th February and I could not get to her funeral which hurt and I am morning her still. She is the 5th woman in my life I have been close to  die of breast or cervical cancer and about the 15th of those women I have known in total.

No I do not minimise cancer.
But living with HIV is NOT easy either and people still lose their lives directly due to it , despite the meds. Or suffer hugely while living with it.

My husband Barry on the other hand does not have any mental health problems, depression or blips, but he would NEVER dismiss me or anyone else that does as he is very well aware that we are all different.

However he does have physical problem he never had before HIV, that we are certain he would not have if he did not have HIV, and they affect his life significantly. As my husband as well as HIV, has not yet the all clear from prostate cancer treatment ( his having prostate cancer is NOT in any way due to HIV of course, but it still affects his quality of life, and as he also has HIV affects him in so many ways).

 Has side effects from the meds such as, photo sensitivity and consequent skin break outs ( had this since the very first day of meds)  diabetes, kidney function problems which are still being looked into, peripheral neuropathy in his feet that he has had since about 3 months after he started the meds.

And more seriously for his expectation of life he also  has
Chronic obstructive pulmonary disease (COPD) since he had PCP Pneumonia ( COPD used to be known as Emphysema and he also since PCP has Chronic bronchitis )

For me, my health story is that  I was disabled BEFORE I acquired HIV

  • Arthritic knees – have had so far 3 operations on both
  • Severe accident in 2003that resulted in months in hospital, threat of amputation of one leg an ankle fusion  and years of reconstruction.
  • Long term nerve damage resulting in cubital and carpel tunnel that is not fixable by operation.

But due to HIV I now also have

Chronic fatigue, high cholesterol, high blood pressure, a form of Avascular Necrosis that has led to my having Kienbocks and I also have bone loss density to the degree of sever osteoporosis, in my hips and lumbar region due apparently to Tenofoir
( disoproxil fumarate ) part of the HIV drug I take Atripla.
No to mention dizziness, intrusive dreams, nausea, diarrhoea

And so I say if you one of the lucky ones it does not have any health problems, now, or has not yet or  have but are well  now and you are now recovered. Please count yourself very lucky, as you will sadly be in a minority!

I think both myself and my husband do live as well as we can with HIV, given our age, what HIV has done to us physically and mentally and to us as a couple, that we are coping very well and living life to the full.

BUT - we are NOT in denial and do not pretend that living with HIV is a piece of damn cake.

And it is my opinion that anyone that does this – PRETENDING HIV IS NO BIG DEAL AND NO PROBLEM TO THEM - is doing others that live with HIV they do all of us that live with HIV a HUGE and total utter disfavour.
And is a form of denial.

And that this stance does NOT help raise awareness that it does not help anti stigma to those that sadly it is too late and have HIV like me and my husband, nor does it help prevent others from acquiring it.

Lest we not forget – Living with HIV is a disaster, totally dire, and to be prevented at all costs.

Keep safe – sadly we did not!

What has prompted this was recently I got upset by someone who lives with HIV and who professes to be wanting to support others online constantly saying and emphasising and re alliterating how easy it was for them and how well they are both doing mentally and physically.

Not saying they are not, their decision to decide this  But this stuff was in reply to people living with HIV that were in distress and so obviously so?

How does that help anyone with HIV in distress? Is his right that this person puts their on others??

This person also called me because I say it how it is an

‘Endless Victim’.

If you truly WANT to offend me BIG TIME and forever call me a frigging victim.

If you want to make me REALLY MAD!!!!

Call me an 'Endless Victim’

To this person - if you cannot get how much that insulted me and how without an apology from you or a least a reply to my apology that I said what I needed to say in a too blunt way, I cannot ever forgive you for that.

I do not think I have been so hurt in many years????

And so very disappointingly

And by someone who lives with HIV, has also had cancer, AV – both hips replaced and due to HIV drugs ...trouble is you seem to think that now we have HAART we do not get AV and various other stuff???

That we do NOT know what you have been though . That we who were diagnosed later than you are breaking our back and putting ourselves 'OUT THERE' to support others;

NOW _not 20 years ago . Does this not count??

 I have news for you , we do.

Also I have AV and other health problems , and I have told you many times I have AV, ostero, and much others you think I am lying?????

AV and other side effects  did not stop in the 80s, 90s even 2000s people who have HIV still get AV ostero, AV, and so many other things??

I am not making it up . Living with HIV  is not great even now .

I soooooooo know you had it worse in the days before the drugs we have now. And it does HURT me that you did.


If you think it does then you put to much on your experience. It is NOT comparative. We all SUFFER in our own way .


 Even with HAART we get AV and many other stuff, and I have had  AIDs – where is your FRIGGING solidarity woman ??


Stop minimising and diminishing those that were diagnosed after you

Apart from anything else if you do you are on a so total looser with this  . The support of us all as a community is all we have .

As while we all, well I certainly do,  so get what you went through, But also know so many will sadly be diagnosed after you - wil lalso suffer years after you!

Your experience is not it. Everything moves on.

Some  may not have had HIV since the 80s or 90s but we do and I for one do, get what you have gone through, and we all so support you and could be one of your greatest supports as you get older etc.
But you blew me out. 

As it seems due to some silly stuff of your own you dismiss me and  I not count because of some stupid prejudice on your part  because you were diagnosed in the 90s and I only knew 6 years ago?

You are NOT the only person to give me this shit. That I have no idea because I was diagnosed more recently and after HAART?
So that makes us fucking different does it ?

We all live with the SAME !!! damn virus.

I lost a friend and in fact lover to AIDs in the 80s and now I live with it myself
That I was diagnosed only just over 6 years ago  it does not, negate me – and if you think so then it is  you are wrong.
How DARE you assume I do not know?

I am so totally angry as when I apologised – and heartfelt and I meant it - that I tried to challenge this persons totally  non empathic and sooooo judgmental attitude to others with HIV who are not feeling they are doing well in an angry way –

And while I was very sorry I did it in the way I did I was NOT sorry did challenge

This person did not even bother to respond to me!!!!
Thank you mate – you know who you are
Your problem not mine?

If those of us who live with HIV cannot stick together and tell it how it truly is – what fucking hope is there??