I do not think I am cut out for the 'hospitality ' thing' ??

I do not think I am cut out for the 'hospitality ' thing'??

A very good friend at the time, Gelly, said when I first decided to let out Yurts, camping and the Studio flat to visitors 'are you sure? I am not sure you have the temperament for this?'

She was totally right, I don't. But I have done OK during the last 8 years or so.

As we/I had no choice.

We had both been diagnosed HIV positive??

Barry had lost his job and directly due to this. We had no money, few savings and a too big house and land to maintain and animals that depended on us.

And we were too traumatised at that point to even consider selling up and moving.~So we sunk the little savings we had into it and despite my 'temperament' we made it work!!!!!

But I guess now I have stopped my main business, the Yurts, I now have less patience?

The visitors three weeks ago seemed fine.

Except when as when they booked, it was as a couple I had only made up the one King size bed?

But when they arrived they did not want to share the same bed?? And said they thought it was a two bed apartment, when all my advertising plainly says it's a one room Studio flat!!!!

Even though she kept referring to him as her 'boyfriend'. She was aghast that she may have to sleeping the same bed with him!!

She was from Brazil he works for london transport and they were 49 and 50 years old, so not either young or I thought , inexperienced??

Not sure he realised she would not share his bed??

But OK , I made up the sofa bed and very quickly. But just wish they had made it clear before they arrived?

From then on it all went pretty smoothly.

And they were interesting visitors as visitors go.

As her grandfather was fascinatingly born and lived in Helston near us in Cornwall and she had always wanted to come here to see where he came from?? That is such great history and I chatted to her about her memories of her Cornish grandfather, who of course was a miner who once in Brazil for work, married a Brazilian girl and stayed and it was very informing and interesting!!

But I have to admit, I was a little taken aback, when she out of the blue,!!!!!!!!!!!!!

................. suddenly pulled me out of sight of her ' boyfriend' grabbed me by both hands, said ' I have something very important to tell you'

starred into my eyes and said - Jesus loves you, you are saved??

And tried to continue, still clutching both my hands and staring into my eye, telling me all about Jesus!! And how she knew and for sure, he had forgiven my 'sins'?

I was a bit relieved as I thought she was going to tell me about her sex life or lack of it, or to complain about the size of the room!!!! or that it was not 2 bedrooms??

I had no choice but to disengage from her and to say - but very nicely - so not to offend as I respect all peoples beliefs and religions and their rights to have them.

'Sorry I am not a christian and never will be? But I thank you so much for your thoughts.'

I have since realised she had looked me up on the internet - we supply free WiFi- and realised, as my name is easily Googled and we are open about this .......that we have both have HIV, that we live with HIV, and she then must have thought I am particular need of saving??

Very ironic as my husband got HIV from a women he met when working in Brazil ??

And I have been faithful to him since 1984!! what crap assumptions people make about those that live with HIV??

Not all are as religious as her or their religion says no to sex outside marriage - but each to their own? and I got HIV from sex, but with my husband who I am, of course, in any religion, 'allowed' to have sex with, without it being a sin!!!!!!!!!!!!!!

Oh well!! But her obviously staunch Catholicism explains why she was not willing to share a bed even at 49 years old and single, with the man who had paid for her ticket to England and was paying for her trip to see her roots.

But not sure he got it before he got here??

But that was OK. Their business , not mine.

So she, and he, mostly her, were fairly interesting. All went well during their stay. Until they left on the Saturday and the next people arrived the same afternoon for the flat?

I had spend since they left cleaning etc and it was a bit more dirty then than for most and with two beds to wash as well?

But fine. That is my job!

But it was not at all 'fine' in my book when the new visitors ran out of gas on their very first evening!!!!! -

I guess the women from Brazil felt the cold???? And OK I get this. but she burnt any profit we may had made that week and then some!!!

We have no mains up here so gas bottles does the heating and hot water in the Studio.

I had had two full 47KG bottles or propane connected when Mrs Brazil and partner arrived. Costing about £70 each. I usually recon in one bottle even in the middle of winter for the Studio flat, at most a week. But somehow it seems they had used two bottles??

Must have had the heating up full blast all 7 days and a shower two if not three times a day for both of them?? Cleaning away their sin perhaps as I am pretty certain they ended up sharing the same bed??!!! Do not ask me how I know this, TMI, but I do and they did!!!

But OK, this was their concern and the gas, I guess, it was not the new visitors worry it was ours.

So we panicked as we had no more gas bottles of that size that the Studio flat requires to effectively run the gas boiler. They are too big to collect ourselves and none could be delivered here until the following Wednesday. So we put a smaller bottle we use for our own gas cooker on it, Barry had to carry it, further hurting his bad back, and crossed our fingers it would do.

It did, thankfully. But we could not cook ourselves for a while. As could not get gas bottles delivered until the next Wednesday and then it was Sunday. But that was not their problem

As a family of two adults and two boys, paying to stay, they at the very least expect to have hot water and heating.

They were very good about it.~ that it took a while to get them hitched back on with gas.

~but it seems were not that enamored with what else we are offering in the studio?

The said in the visitors book..................

We have a lovely view but the Studio is too small?

Well we make it clear it's really suitable for couples but if you do want to save money on your family holiday and squash a couple of kids in as well, then that's fine by us and we will even supply the bedding and make up the Sofa bed.

But we can't make the room bigger!!!

They added we need to turn the sofa bed around so you can sit and look a the view while watching TV, or get a new sofa bed!

Totally impossible, there is not the room!? That sofa bed is the only one we have found that fits and it will only fit in one position - but heigh ho!!!

They further added that need to get a screen for between the king size bed and the sofa bed??

Well you are paying the price for a one bed Studio. And cheap even for that??

So in my view if you want to have nooky without your kids seeing , then I suggest you book a two bed apartment and pay the price for that, or just wait till you get home??

They also added that we need to get the lane fixed, as to bumpy and too narrow - Oh I soooooooooooo wish!!!!

We'd love to get the lane fixed!!!

It does not do our cars any good either.

Does anyone think we want to live up a lane that is like this??? If we had a choice???

But it is a 'non adopted lane/bridal way.

and not directly ours or any ones responsibility

~Yet in fact up until this year my husband went up and down the lane, every single year, for over 30 years!!!! filling potholes with concrete and bags of DIY ash-felt ....by hand.......for over 30 years!!

Occasionally others who use this lane have contributed something to keep it usable.

And in the many years until the last 10 years the farmer next door would occasionally get a load of ashfelt from a friend to fill the worse of the potholes and we would help him lay it.

But not in recent years and not ever our next door neighbors and not anyone as consistently as Barry for the last 30 years!!!!

But his back has now given out , finally. And he is just not capable of pushing wheelbarrows of concrete or whatever, up and down that lane!!

But we would always join in and contribute a fair share to get it solved.

But no one else who uses it seems to have any interest and some damage it far more than we ever have - i.e tractors, lorries and recently a JCB???!!!!!!!!!!!!! going up and down all the time, that really damages the lane etc.

When we have only ever driven cars up and down it??

But we cannot afford, not on our own, to put it right? To ash-felt, or whatever, it on our own, but we are here and always willing to contribute. If others would??

It seems no one else that uses it, has any interest whatsoever in paying anything to fix the lane??

This saga does not quite end there.

Those in the Studio until yesterday also did something that really got to me - they put toilet paper in the key hole in the door between us and filled up the gaps in the door with this and cushions and other stuff, between us and them?

To me this was a huge insult.??!
They could never hear any noise from us as we deliberately and carefully do not make any.

Hard to explain the situation - but

But the Studio we let was once our 'granny flat' for my mother in law.

It has its own en-suite bathroom, own heating, own front door. It is completely self contained from our house. But because it was built for our then over 80 year old MIL there was a connecting door built in between us to the house. For her then safety

But while we have not taken it out. As you never know when the Studio flat maybe needed for a one of us, a family member or a friend in need. In fact when I was in a wheelchair for 2 years or so I lived in there myself ........ with this door open between me and the rest of the house

But we have effectively since blocked it off, for all intents or purposes while we have strangers in there.

There is now a wardrobe over it on the Studio side.

Yes inside, when you open that cupboard, you can see the door, from that side. So I assume they thought we could hear or smell them and they us??

But on our side there is also another storage cupboard. Packed full of duvets, bedding towels and everything for letting the Studio and no noise or anything can get thought?

Least I did not think so?? We cannot hear or smell anything from anyone in the Studio and we are always very quiet.

I would love now and then to have a blast out from my stereo . Listen to music very loud and even now and then have friends around to do so with me.

But since we have let the flat, I have never dared and we creep around so as not to disturb anyone staying.

But what I am guessing happened this last week is...............

Barry sadly now has a very bad back. So unusually he was spending a lot of time on the sofa in the room just behind the Studio. He could not crawl upstairs, and he smokes, and a lot. especially when in pain. Then he smokes more.

OK we know he should not, for his health and it is not PC, But he does and it is his life and his ( and my) house??

But because we let out a small part of it to holiday visitors we have just have to suffer the huge embarrassment and the feeling that we are persons non grata, of our visitors stuffing toilet paper into the keyhole and around the door to keep out the smell, or noise, or whatever, from us???

And that is my point.

I am not suited to this 'hospitality ' lark. As it hurt me to be so non approved of.......by anyone.

Barry says 'stuff em ' and they know what we are offering and it is so very cheap ( when we go away anywhere we have never paid as little per night as our visitors do) and it is his business if he smokes or not etc.

But my feeling. If we let out any part of our house to anyone.......it is no longer our house?? Even though we struggled and for so many years to pay for it. As long as we have to let out even just part of it, it is not ours??
So wish we could afford not to do this at all anymore

But reality says ....we have no choice??

Not the end - to be continued

Prince - His death, HIV and my thoughts

The media. many in the HIV community and many on social media are speculating about whether Prince had HIV and died of HIV complications ( i.e AIDS related HIV opportunistic infections.)

Many are asking why does this matter? It does not alter his achievements, who he was, what he meant to so many.

One blogger I know wrote this on the subject.

http://whoneedsnormalcy.blogspot.co.uk/2016/04/why-you-shouldnt-care-whether-prince.html

And I do very much agree with most of what this blogger said as of course it doesn't make any difference whether he had HIV or not in terms of who he was, what he achieved, his legacy etc.

But as someone who is also living with HIV, one aspect does concern me and feel it is legitimate to express it.

That if he, or anyone, did die if HIV related opportunistic infections, this was avoidable with modern medications. Which he certainly had access to.

Then, if he died of this cause the only explanation is he refused to take them and died because he was in denial.

Denial kills when you live with HIV .

Yes those living with HIV and on ARV medications, do die, everyone does,  and a few much earlier than they may have if they had not lived with HIV. As living with HIV, especially if like us you have had a low CD4 count at anytime. And  this and even the meds themselves can still cause or be partly responsible for early aging and cardiovascular, and other conditions such as bone loss and loss kidney function - both of which which I have - and other conditions that may cause premature death.

However those living with HIV and taking ARV medications, rarely, if ever if their meds are working for them, die of what used to be known as AIDS i.e HIV related syndrome of infections and conditions.

And if it is not pointed out that if this was the cause of his death, it was avoidable. I think/fear  that many who have no knowledge of HIV will assume that HIV is not the manageable condition it now is?

And I think this is stigmatising and sets ignorance about HIV back a few years.

As those that are not aware that if he just took the meds he'd still be alive, and heathy enough to still be performing and creating, they also won't realise that taking HIV meds renders most effectively un infectious.

Which is why of course mothers living with HIV now rarely pass it on to their children, why we can now have children and healthy children, and normal sexual and other relationships even with those that don't live with HIV .

Pointing out that if a very famous person only died of HIV complications ( once known as AIDs)  it can only be because he refused medication, is in my view a valid point to make, for many reasons.

And even though we do not know for sure he had HIV. As there is much speculation he did and it is daily mentioned in social media, I think it is legitimate and necessary to make clear that if he did, he would only have died due to HIV because he refused medication.

I am going to use this more whether you want to hear it or not - its my blog

In my last post  I was probably overreacting to a few people in a couple of Facebook groups I belong to saying the old turkey - HIV is no problem now you have the drugs!!!! - Said by those that do not understand the reality of living with HIV despite the wonderful drugs we have now.

We are, thankfully and surprisingly given our age and our very counts when diagnosed - in fact both of us currently reasonably healthy ourselves. And so very , very grateful that this is so

But some of this I put down to the very brilliant .....and free to us here ........ health care we in the UK have under the NHS, but it still takes its toll in so many other ways and for me especially in terms of my always fragile mental health and my lifelong fear of non - acceptance.


In terms of HIV. I  lost a good friend in 1984 - lest it never be forgotten that without the drugs HIV does mean death, as it sadly did for him, my very good friend
And it is not to be forgotten that many in the world still do not have access to, or cannot utilize these drugs for so many reasons, social, political, personal........................................

But even since the my own diagnosis only 9 years ago, and being lucky and having the incredible NHS where my treatment and drugs are free............

I have still lost 3 people I knew face to face and locally since I have had HIV from HIV as a secondary cause of death and one the main cause of death, and many, many, others I have learned to know, like and love online.

Most were not open about their status but one who died was. A totally lovely man Bruce Ellsworth, who was open and an inspiration to us all, was my age and a lovely person who helped me and so many others ......but there have been , and sadly, so many more.

Both Barry and I are relativity OK.
Unbelievably amazing to us that this is so.
We are blessed by something, no idea what but we are.

But we do have health issues due to the drugs. Me more than him.

As he seems to be OK so far, well since he got over AIDS. While he has cancer -  prostate -  but this is unrelated to HIV. He is in remission now and for that and it is the luck of the draw he got that, and genetics sadly. But so far it is OK and now in remission.
~
I have osteoporosis, AVN, daily side effects and we now both have a degree of kidney failure, which will progress if nothing is done, due to a drug we are taking Tenofovir . Which is the backbone of the ARV combinations both of us are taking.
Which is well known to cause in some, bone loss and kidney failure.

Only in some but for those it does and it is significant and has been significant for me due to AVN ( Kienbock's disease, can't use either of my hands well now due to AVN and due to significant osteoporosis I have other problems (OK at my age I may have got this anyway, but statistics show that Tenofovir can and does cause this and kidney failure especially in those older and who had very low T cell - CD4 counts- at one time)

It has to be remembered that people aging with HIV is at present a very new thing. 

It is only now that many who have had it or been diagnosed for years are reaching their mid 50s and very few are like us 60s or older.

We are not unusual having only been diagnosed in our 50s but many have known for far longer and I wish I had.

We have probably had it for many years before and had no idea , as many do not -

 get fringing tested all of you!!! Do not just assume as we did,  that HIV never would and never did touch our lives - get tested. ..... pretty please !! Believe  me it is far better to know if it does sooner rather than later.

To know makes a whole difference to your prospect of life.

However remote you feel it is, if you get tested and  you are clear, as the majority will be. Then it can only be a positive thing to have done for yourself and it may have been an interesting or learning situation for you at the very least. If you have HIV you wil get the treatment and on time to save your life - testing is now only ever a good thing.

All who read this, for me, just have a HIV test and one every single year from now on - please, for me!!

But we are doing well so far.

That being said I do know two women personally in their 70s that are doing reasonably OK but I can't name as they are not open and I know so many more online - I do not know if it is significant that those I do know living with HIV and stil alive late 60s to 70s are all women now???

But what aging with HIV, even with the drugs entails is currently pretty much an unknown quantity??? It is something that has not until now happened before. we ar part of going into new ground.

But we are two of the lucky ones.
Because we live in the UK and are among the oldest at our treatment clinic - not by any means the oldest but among -

And we are still relatively healthy, and our current health problems ( except that is due to my accident which is fine as I have long adjusted to this) are most of them entirely caused by the ARV drugs they are pulling out the stops and trying to get us both on a new form of Tenofovir that does not cause bone loss of kidney failure to the degree the one we are on now does.

So looking forward to that. I have much to do in life and in some ways it is rosier than it has been for some years.

I get my full state pension on the 6th Jan. - one of the lucky ones for a woman as paid over 40 years of stamps and just scraped in to get an earnings related pension. If I had been born two months later I would not have.

So the first time in many years my survival financially .....such a relief ............does not rest only on what work I can do to scrape a few pennies, which to do so relied on me being here, and the same for Barry.

I now so want to travel, not big time but just ordinary travel . Until I went to Morocco in Oct I had not been away from this house for more than 30 years for more than 3 nights with Barry , 7 on my own to visit my sister once!!

Now I finally can ( and with Barry not alone) and for the first time in 30 years maybe can as I can just about to pay for animal care if we both go away, so I have pre booked a couple of holidays.

One to visit a friend who now lives in Greece on Zakinthos who every since she went there I have so wanted to visit....but no way could, until I got my pension - a bit of financial security and the means to pay for care of my animals I before lacked.

And I have booked to go to Naples in May, only to see Pompeii and Herculaneum. Which has been on my bucket list for over 40 years but somehow never got the chance.

So things are fine for us ..............as long as we keep healthy enough to do what we plan.

But the trouble with HIV..is.......
Its a smoking gun and in fact you never can know. Never, ever for sure.


We know are so lucky. We have the the totally amazing NHS and the drugs so far work for us and those that are causing us problems we know our health professionals are currently gunning for us.

Sadly not all and especially not in the UK, are so lucky, as us

I never write on here now

A picture of us with our dogs at Praa Sands, Cornwall

I never write on here now. As really does anyone but but us care??

I do not think so at all

So now I use facebook mostly now. And twitter. Jut for me as I am well aware that non one gives one iota about us or our story/
Why should then. HIV dues not implicae on your life in any way......not until the very moment it does........and then......in some aspects it is too late!!

I want to stop ' preaching to the converted ' ........too fiking late for us.
And reach those of you who do not yet live with HIV
And think it will never happen to you an if you listen to me it NEVER will be of interest ??!!


If anyone is remotely interested you can follow us on either.
And we are so really OK at the minute. Doing really well on our ARVs and now me 63 in Feb and Barry 64 in Jan.
But today in Face-book I was today reminded of how dire parts of our journey has been so I will post the memory it brought up here.

_________________________________________

As a post on Facebook reminded me of when Barry was really ill with AIDS and was discharged from hospital to come home as they could do no more for him. As it was by then a question of if the drugs worked for him he would live, if not he wouldn't.

One horrible night I had to call out the duty Serco doc as he was so very ill, could not breath, was puking and distressed and it was so very scary. For us both.

It has changed now and thank goodness - http://www.pulsetoday.co.uk/news/commissioning/commissioning-topics/urgent-care/cornish-doctors-take-over-out-of-hours-contract-from-serco/20009214.fullarticle

I called the duty doctor service in real desperation, I am his partner/wife ( since 1985)  and then at that time his nurse and I also had not long found out I also had HIV myself and my numbers were also not at all good.

I was was sooooo alone with it all.
We had no help really then at all . Except for Barry's 2 friends. You know who you are and we will never forget the support you gave him and your kindness.
But no one except one of them came to see us or offered us anything at all.
We felt we were and in essence we were, truly alone.

I had therefore to call them........ I tried not to but I was so truly scared that night. I am not medically trained I am not a nurse although I had to be one. If he had died that night no one could have changed that. But I wanted his passing, if it was to happen.,  to be as good as it could be. I felt inadequate to achieve this .

So I called our then out of hours doctor service ..................got this totally disinterested doc who had been brought in from Spain to do the weekend shift in Cornwall for huge/shit loads amounts of money and who could hardly speak english and had not even bothered even to read his notes.

Nor do I even think he even looked at Barry at all - except to enter the door  just inside his room which was dark as Barry was photosensitive then and could not stand any light. Just to stand by the door and ask him a couple of questions.

I was a wimp as was so upset then and living with HIV myself was so very new to me ( and the last time I had been so 'close up and personal' with HIV was when my close friend and one time lover Derek died of AIDs in 1984)

So I was so very scared and said to the doctor I was scared he would die that night.

The doc said No he will be playing football for England in 50 years!!!!!

As he was already then in his 50s and has never in his life played or liked football and will be 100+ years in another 50 years . It was dire at the time and so scary to find in truth we did not even have any real help at all, not even from a doctor we called.

But we often joke about this now.

Whenever he gets unwell now we ask is it time for him to take up football finally before its too late?

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
http://www.express.co.uk/news/uk/422130/NHS-staff-with-HIV-ban-to-be-lifted

http://www.bbc.co.uk/news/health-23698991

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 https://www.gov.uk/definition-of-disability-under-equality-act-2010.

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 http://www.bbc.co.uk/news/health-23698991

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.

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 .

However

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

 

 

 

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!