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??