Tuesday, 29 December 2015

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

Sunday, 27 December 2015

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?