Thursday, 18 February 2010

Back to the drawing Board!

Now I have used my blog to get it off my mind the events of the last few days and how difficult I found the course, I am determined to at least try to complete the work and do the assignments.

To do that I am going to go back to the start.

I intend to work through each exercise of the course using the online course materials and try to grasp what I did not first time around.
Then I intend to try the assignments

Wish me luck!!

What is PHP? - The Course

You may well ask 'what is PHP ' ?
Not sure I know but I will try!

Well it is a programming language which in simple terms is used to make web pages DO SOMETHING.

To make them accept and receive input and make them dynamic rather than static and as I understand it - which is not much as yet - mostly used to put stored information on to a web page or retrieve stored information. This information can be put in by the website user, usually using a form,  or requested by the website user or put in and requested by the website author.

Shopping cart websites mostly use PHP i.e Amazon. Facebook uses PHP to run its social network site as does most sites that are not static web pages - this blog system probably runs using PHP.
It used to be called Personal Home Page, but it is now been changed to Hypertext Preprocessor.:

Here is an example of some 'VERY VERY' basic PHP code:
//set up variables including some calculations
  $myname = "Dave";                //My name
  $jobnow = "Lecturer" ;           // my job now
  $agenow = 56 ;                   // My age as of 2010
  $yearnow = 2010 ;                // This year
  $years = 5 ;                     // number for calculation
  $newyear = $yearnow+$years;      // result of variables $yearnow and $years added together
  $newage = $agenow+$years;        // result of variables $agenow and $years added together
  $lifelater = "sailing round the Mediterranean" ;  // what I would like to be doing

// This example shows variables (above) being echoed to the screen,
// and also a variable used in an inline calculation (65-$agenow below) 

echo "Hello! my name is "."$myname" .". It is ". "$yearnow" . " and I am currently " ."$agenow". " and a "."$jobnow" . ". In " . "$years" . " years time it will be " . "$newyear" . " and I will be ". "$newage"
. " and  ". "$lifelater" . "  - I hope. It will be another ", 65-$agenow , " years before I am able to retire fully." ;

Do I understand it ?
Sadly after a 3 day intensive course - no not really! - I hope to in about 2 months as we have two assignments to do over 2 months, but on the course I found it hard to grasp

This was part of my frustration on the course. The last time I did a course that involved any sort of web technology was about 10 years ago, but then I was always the star pupil. The one that got it straight away, flew ahead and helped others in the group and came away with a merit if not a distinction.

I already knew that in the last 10 years my brain has become not what it then was. I am aware that my memory and my ability to grasp new concepts are diminishing, I guess it is age?

Well I hope it is just age, as dementia runs in our family and if you have HIV you are hugely more likely to get this than the average person and there is something called HIV dementia which you can get even if your HIV is controlled as mine is by drugs.

So I really  fear any signs that my mind is not functioning as it did in any way and while I'm not sure of the extent of it I know I am not imagining that my mental abilities are not what they were, so anything that confirms this is highly upsetting to me.

So I knew this course would be hard and more difficult than I may once have found it. but I was astounded by how hard it was and how difficult for me to grasp things I know I may have grasped much quicker in the past.

But what was even more worrying is I found I had forgotten stuff I used to know off by heart - such as HTML & CSS code which I taught myself many years ago. And also realized that as I have done a smattering of programming theory before that some of the concepts I used to know. And while I used theses concepts in other programming languages such as visual basic and C++ I should have understood the concepts and been able to work out how to use them in PHP.

What was  worrying was I had forgotten stuff I knew I once knew, and when I tried to remember or relearn it was like there was a hole where the memory should be that try as I might, I could not fill!!!

- it felt very strange and I truly then really started during the course to wonder if I really do have the onset of dementia ? it was more than just not being able to grasp something , it felt like something in my head was missing!!!

That alone would have made me cry with frustration in itself and indeed embarrassingly did a couple of times during the 3 days - what a wally!! the others in the group must have thought me!!!!!!!!!! well I have a good idea what some thought, some were very kind but others I know found me a disruption.

But also I had to cope with:
  • The almost agoraphobia I feel right now when out of the house for any length of time after not being out for more than a couple of hours for over 6 months, especially on my own with no one I knew.
  • Meeting new people and trying to relate to them ( that course would have gone so differently for me if a friend had come . Hazel was going to come but decided not to . If she had been there I know I would have been able to hold it together with no problem. But I seem to be incapable of coping with any situation where I do not know anyone now)
  • Having to cope with my extreme lack of self esteem and total paranoia of how others are viewing me! Of course if I draw attention to the fact I feel self conscious and feel I do not fit in ( and at the moment I often do) this makes it worse and draws attention to myself more - an makes me look like a complete wally!!
  • Fearing my mind just would not be up to the course and confirmation that it may not be!
  • Being outside my work comfort zone i.e not in front of my own computer with the programs I use installed, for instance there was not even Dreamweaver on the laptop I had and I have not even written HTML without Dreamweaver for many years ( also I had to use a laptop and  my eyes are not good enough to see the screen properly, especially small bits of code like stops and double speech and single speech  marks etc. So at home I use two large screens)
  • Being on a course i.e and away from home when I was feeling ill
  • Getting myself to a college on time when I have not HAD to be anywhere on time for at least 3 years.
The worse in terms of social interaction was having to do the course with people I did not know.

To be fair while there was one or two who did not know anyone. But most were either lecturers, IT employees or existing students at the college who know others on the course.
And this would not have mattered quite so much to me  if this had not been an intensive course i.e had been one day a week  or had only been for a couple of hours a day, as my frustrations of it all would not have built up or had time to dissipate in between sessions. And ther would have been more time to get to know the other participants and feel more comfortable with them.

This would not matter one iota to the others there as this was such a minuscule part f the lives of busy people who meet new people every day.
But for me it was a huge thing to attempt

Which is terrible as  considering I was a student at that college full time for 3 years once and also taught web design and digital imaging as a lecturer there!!!!

It is amazing how a few life events can change things for you so much !

A Breif Foray into the Real World

The last few days I have spent on a course in PHP programming at a local college.
This was VERY hard as in truth I have become over the last 6 months something of a recluse.

When first diagnosed and after the initial shock that lasted about 3 months quite honestly it was a relief to know what was wrong as finally I had a reason for why I had been feeling so physically, and to a degree mentally, absolutely awful for so long.

Then I felt OK and in fact quite positive for quite a while as I felt that yes I have HIV I but have skills I will devote what is left of my useful life to promote awareness of HIV to try to prevent at least one person getting it and volunteering for HIV services or running or being involved in peer support groups.

It started well in that I joined PozFem UK which was very positive for me and became a regional coordinator and helping them set up their web forum.

On the back of this I started a women's group for HIV women with KPS our local HIV charity and tried to put myself forward to do talks as a positive speaker on HIV and attempted to do other awareness i.e by appearing in magazines, newspapers and latterly TV - as I will be on Embarrassing Bodies on Channel 4 on March 5th 2010 , not as someone who see their doctors with an embarrassing condition but as someone who explains what it is like to live with HIV.

But gradually I found that in Cornwall at least my input is not much wanted and most of the stuff I tried to do failed.

Partly it seems to be because I am too open about begin HIV even for the local HIV charity - but I refuse to be otherwise even if this leaves me with no support - which of course it has!!

The women s group dwindled to no one. & came initially but most women were worried about how open I had been about being HIV and that I had goes public in the papers and I think feared being outed themselves due to association with me.

Well I know that this was felt by most and one women told me in the group she would kill me if I ever spoke to her on the street and another came to the group just to harangue me about begin open and my views I expressed early on in this blog. I was polite to her as I could see she was genuinely upset - but CRIKEY this is my blog!!!!

Another who did not come to the group, she never even gave it a try, rang me very angry with me that I had appeared in a magazine about HIV and living in Cornwall that her mum read??!!!!!

How that mattered I do not know as I have never met this woman, nor do I know her mum, nor her me? The argument seemed to be that by letting the public know that people in Cornwall have HIV it will somehow out her to her friends and neighbors - I just did not get it!!

But I DO UNDERSTAND that what matters is they felt like that and if they did then a womens group in Cornwall with me having anything to do with it would not work, nor could I expect a lot of support from most women with HIV in Cornwall myself.That I may have made a different decision had I known before I started how most people with HIV are living secret lives and more so women with HIV - at least in Cornwall.
But it is to late for me to go back into the closet now, nor do I want to !
I do have to point out that there have been two exceptions to this attitude by two women with HIV who live in Cornwall, but sadly because of work and other reasons they can not come to the group.

In addition KPS never have asked to use my services as a public speaker after I did it once and was too vocal and monopolized the group I was asked to speak to.

( and sadly I learned by this that if you have a small slot to talk abut HIV in a conference of meeting about something else, this was about gyny cancers, not to monopolize more of the slot than you have been given. But this was my first time and I was just to passionate about being given the opportunity to educate about HIV and if I was asked a second time I know I would get it right. I have practiced what I would say both in PozFem groups and on my own and I would never make the same mistake again, but I blew it and KPS never asked me to do it again!!! Surely you are allowed to make mistakes and learn???)

All this failed so I turned myself to other activities and did a Art curse which went OK but I got over ambitious and thought I could do an Art  MA at Falmouth Art College without first doing a degree as I have a HND in Multimedia Design.

But I failed to get in .

These failures mentioned above are not the only failures I have had in carving out a role for myself that I feel is a useful use of my time and will do something to raise awareness in Cornwall of HIV , nor are they the only things I have attempted and failed at in the last year. They are just some of them. And i did not fail through lack of trying. To keep my self confidence and self esteem, which is rocky at the best of times I needed at least one success - everyone needs this. But i have not had any recently and I have become increasingly despondent .

So about 6 months ago I became very demoralized and have hardly been out for the last 6 months and not mixed with anyone apart from my family.

This is terribly bad for me.
My social skills and my ability to interact on a 'small talk' level where appropriate and not on an emotional level with everyone regardless were hard won as due to my childhood I had to learn them from scratch when I became an adult and went into the world of youth work and teaching.

As they are learned late they are easily lost if I do not relate to people face to face for a while.
I now find I currently have no social skills and lack confidence completely face to face.

My high emotional level of interaction is absolutely fine when relating on support forums etc on the internet as in text only and not face to face there is no point in saying anything at all if all you say is small talk like, nasty weather or respond to someone who says they have a problem with 'there there' and never mind!

But face to face especially with people you do not know, it does not go down well and you do not usually get anyone wanting to continue to get to know you.

I also for the first time feel to a dregree in public internally ashamed that I am HIV - this is whether anyone knows this or not - But most do know as I wear the AIDs ribbon and other HIV badges all the time and I made a pact with myself I would tell people about being HIV+ as one I can not lead a double life and this affects every aspect of my life but also I want to treat HIV as I would any illness. And while others would not tell anyone they had diabetes, cancer whatever, I would. It is my nature to tell people if I have an illness that is affecting me both physically and mentally and perhaps affecting my performance in what ever sphere I am in - and HIV does do this to me

But also will all issues I have faced in life, a stay in a psychiatric hospital as a teenager, PNI, childhood sexual abuse  my way of coping anyway is to tell people so I have got it over with and have nothing to feel I am hiding and no one can gossip behind my back about anything I have not told them myself.

It may not be for everyone, but I am in my 50s and it is a strategy that works for me

So I decided to go back to what I know i.e technology and the web. And do an intensive course in PHP programming as it was not included on my HND and  I have tried on my own but just could not grasp it and it would be useful for the PNI website and to run forums on HIV and also if I ever did decide to go back ito commercial web design it would be useful there too.

But I was left utterly angry with myself for finding it so difficult to cope with a course with strangers,  my behavior on that course an how difficult I found the work.

Illness - my bigest nightmare!

Why did it matter to me so much that I had the galloping trots, gripes and felt sick when I had to attend the three day course I have just done?

Most people would have just accepted that they either had to go in and do it as the course was a one off and only three days, or just not go. And that if they choose to attend, while it is not pleasant to do a course when you have daireea, feel sick and have griping stomach pains, they would just have got on with it and NOT felt close to tears as I did for all of the 3 days.  ( which was triggered by feeling ill, but once I was in that place where i feel totally inadequate, vulnerable and tearful  because I am ill, everything sets it off and I can not get out of it!)

For someone who has such a 'thing' about illness and especially vomiting, HIV is one of the worst things that can happen to you. Well I know HIV is one of the worst things that can happen to anyone actually but I am just talking about my own particular perspective and how having HIV affects me due to my fear of illness.

When I was first diagnosed - and at such a late stage of HIV infection i.e late diagnoses - after the initial shock that lasted about 3 months quite honestly  it was a relief as finally I had a reason for why I had been feeling so physically, and to a degree mentally, absolutely awful for so long.

The way I felt mentally is not obvioulsy directly due to the HIV, but it is the way I react to not feeling physically well. I basically have a good body and probably genetically predisposed to health, so when I am ill it really gets me down but also unexplained illness gets me down even more due to some issues in my childhood about havign a father who abhorred illness, could not accept anyone was ill in his family unless it was proved in triplicate by doctors and even then harangued and abused you for being ill,or even saying you felt ill. He insisted he was never ill and all illness was in the mind so if you were ill it was a sign of having a 'week mind' and being a week person.

Oh I know what crap that is
And that it was his fear of illness, not mine!!

But you internalize your parents beliefs even if you fight against doing this and know they are rubbish - or simply do not apply to you or are not part of your beliefs -  it is still in your subconscious . Well my fathers attitude toward illness is in mine anyway.  Which is i.e if you are ill it is due to your own inadequacies and that you are week, and if you are/of feel ill with no explanation from a physician, then it is all in your mind and you are not a worthy person.

Sadly - for me and my dad - I have a food intolerance to cheese and all cheese products that made me feel sick and  vomit all the time as a child, plus get migraines and other symptoms.

This did NOT go down well with my father, as no one could work out while I was always feeling ill and no doctor could find any reason, but as they had to admit it was very real all they could come up with was that it was 'psychosomatic' which pleased my father fine as this is what he thought all illnesses were anyway .

So I got no sympathy at all when ill and especially when it manifested itself in an obvious way such as the shits or vomiting. Nor would he let my mum give me any sympathy or care when I was ill, as if she did he abused her. he was an abusive man to my mum anyway and she for many years was in fear of his verbal and physical violence

So I grew up with a fear of being ill.

But while I retain a hatred of being ill in any way this fear became specifically a fear of diarrhea but mostly a fear of vomiting when my mum was pregnant with my younger brother, because I saw him abuse her if she vomited due to pregnancy sickness - I wont go into what he did if she vomited but it was awful to witness as a 4 year old

At one point in my life - when 17 this fear, emectophobia, completely disabled me and I was hospitalized for it .

But since then as an adult I learned to cope with it and as long as I was ill at home and not out in a public place I could cope but in the end I even learned to cope publicly, and from 19 to when I found I had HIV I NEVER let it affect my life. I trained as a teacher, youth worker and latterly as a web designer and worked and had a full life.

But sadly because I now know I have HIV, and have had persistent stomach symptoms, which started before I found I had HIV and it was one of the first reasons for me to feel something was wrong with my health.

But the HIV meds also make me feel sick and upset my digestion, so now my fear of illness has once again become problematic and especially I fear being taken ill and especially vomiting when in a public place.

So once again - and for the first time in many years I have difficulties sometimes going out and mixing with people publicly.

I am OK as long as I feel fine , but if I feel ill and have to go out, it is a nightmare for me and my behavior also is not very adult sadly.

Tuesday, 16 February 2010

Valentines Day - A bit of a wash out

I was so looking forward to Valentines day itself, but unfortunately my bowels had different ideas!
And if you are reading this thinking TMI - Too Much Information - then you do not have to read, this is my blog, my journey through HIV/AIDs and this is about the realities of living with HIV for me , and some of it is not always pleasant.

As I said this blog is my blog and for me to use as I wish. And what living with hIV is for me may not be the same at all for others with HIV either those on HIV medications or those not. I have met those that have HIV and are on medications who have said that since they have been on the meds they have not been healthier, and others who are in the dormant stage of HIV - which can last between a few months to 10+ years - and therefore do not need meds yet who feel no different than they ever did. But both Barry and I had gone past the dormant stage before we even knew we had HIV and are not on meds which give us both side effects.

So I woke up on the morning of Valentines day expecting to have a lovely day, but my body said differently.

I immediately had what we call in the UK the trots, or in other words diarrhea and not just ordinary diarrhea, total water whereby I could not be far from a loo all day.
Thant put paid to my plans for the day!!

Barry was lovely though. As it was obvious we could not go out  he went out and bought me a card, red roses, a Valentines meal deal from Tescos consisting of a starter, main, sweet and wine for the evening when he hoped I would be recovered enough to eat it and if not we could have it on Monday night - he is a star soemtimes, but then again he knows what this is like as he gets it too, and often worse than me.

By the evening I was just about well enough to eat a little but I was so worried for the morning as I had booked into a local College to do a 3 day intensive course on PHP programming and their was no way I could go if I was like this as I would never make the toilet.
Just my luck to get it the day before I had to sit in a college lecture room all day with a load of strangers who do not know my situation!!

You may say - well this has nothing to do with HIV, anyone can get this?
Yes of course but not with the frequency that we get it .
For a start we both have diarrhea every morning anyway since we have been on the meds, I have learned not all but many on HIV meds do get this. But not as bad as when we have theses frequent bouts of disabling stomach problems. And of course the assumption is that it is caused by the HIV meds.

But I do not think so. The milder problems in the morning probably are but I think the awful attacks are the HIV itself. I am not the only person to think this as many write about this problem since they have had HIV, on meds or not, on HIV health sites.

And I first noticed it about 3 years before we were diagnosed. As I started to realize that things were not OK with my health in about 2004/5 when I found I was tired all the time, and I do not mean just tired but so fatigued I could hardly move soemtimes and  had permanently swollen glands and started to get frequent hot flushes and sweats. And night sweets that soaked the bed.  At first I thought this may be the menopause but I had reached that early some years before and had long ceased to have any symptoms. And this did not explain why Barry had them too? And I also started to have regular bouts of vomiting - and I HATE vomiting!!

Then I started to get theses horrible boats of watery diarrhea and stomach cramps, so bad that I went to my doctor who then referred me on to a consultant as at my age , in my 50s, you always have to be wary of this sort of symptom. Of course neither my doctor nor the consultant thought of HIV, no one ever does and it is well known that all theses symptoms and others I have not gone into here can be symptoms of undiagnosed HIV .

I was sent for investigations, such as  colonoscopys etc 
I was very lucky that I was sent for this as it was found I had polyps, which are the beginnings of bowel cancer and they were removed. People with HIV are something like 50% + more likely to get bowel cancer and of course your chances of bowel cancer increase drastically after 50 and it is thought that in an ideal world people over 50 would have a colonoscopy every 5 years. In fact it is offered on BUPA, but I have never been rich enough, like most people to afford private health care and rely on the NHS so I count myself one of the lucky ones that this problem was found.

Now it is known I have HIV and get polyps  I have to go for a colonoscopy regularly to have the latest crop removed, and this is NOT a pleasant procedure. But at least knowing this I know that as long as I keep going for them I will not die of bowel cancer which I may have if theses had not been found.

But my point was that although I was found to have polyps and they were removed I was told by my consultant that it did not explain the diarrhea as they were not yet large enough to cause that.

And yet again I was sent away being told that while it was a good thing I had gone for the test my actually symptoms, i.e flushes, sweats, glands, diarrhea, vomiting etc were my MIND??? That they either did not exist or they were caused by stress or that I had IBS. I bet hundreds of people have been diagnosed to have stress symptoms and especially IBS when they actually are ill and no one has bothered to find out exactly what it is!

Anyway since going on the HIV meds, it was obvious  from the blood test results  that my HIV was getting under control in that my virus levels were dropping and eventually reached undetectable and that my TCells ( CD4 cells in this case) were increasing and although not anywhere near normal levels even now they are a lot higher than they were so this means my immune system is a lot better.

But also many of the symptoms started to decrease. few went altogether but I found I had energy again. Not as much as before as I can rarely stay up after 9pm, but it is better, the sweats decreased and the glands have gone .

But I still get theses horrible bouts of diarrhea !

Saturday, 13 February 2010

How Time Flys - My Valentine

Tomorrow will be the third Valentines day we have shared since we have known we were HIV!

Of course having been married for over 23 years and known each other for about 30 years we have shared many other Valentines and probably several others when we had HIV but did not know it as we have probably now had HIV for approximately  but since the HIV diagnosis Valentines day has taken on a special significance for us .

As by co-incidence Valentines day 3 years ago was the day Barry started HIV meds for the first time and he had only been back home from hospital  and out of danger from dying of PCP for a short time.

So for me Valentines Day will always now mark the first day us both becoming full members of the 'living with HIV' club.

This sounds depressing, but today I feel slightly better and able to take a different perspective.

As it also marks us ( knowingly) surviving with HIV for over 2  years, as their was a time in the beginning  and there was a time in the beginning when I really feared that one or the other of us would not survive as Barry was so ill and I too was unwell. But more importantly it marks that we have survived as a couple , that our relationship has survived and is strong despite when I wrote in my last post.

If our marriage can survive this it can survive anything, as what can be more of a test to a relationship than finding out in such a hard way that your partner of so many years has been unfaithful, and that unfaithfulness led to us both acquiring what is an incurable virus. Few relationships have been so tested and in fact I know few couples that get along and love each other more than us .

So today I feel more positive.

We have made our third Valentines with our relationship still in tact despite the ups and downs that are bound to happen under the circumstances and with us both relatively healthy.

There is of course a lot more of our journey to go, a lot more learning for us both to do  and who knows how it will end .
But right now we are both here and together and basically in tact .

We have survived!!

Friday, 12 February 2010

The Black Days - depression - sexual infidelity & the importance of truth

I have been really in a black hole again the last few days.

It goes up and down, I seem OK for a week or two then I reach the floor again. A women I know who has had HIV for about 15 years said it took her 3 years to even know what day it was as she was in shock. well I thought I was not and I was doing well
But I guess I am in shock too - it has just taken longer to manifest itself.

The worse of my black dog days is the days when I start to blame Barry.

Well not blame him exactly but constantly ask him WHY??
Yes he was the one that was unfaithful, but I know really it does not matter, theses things happen and compared to most marriages I know ours has endured far longer as many have ended years ago. And BOTH of us have been more faithful to each other than the majority of couples I have known .
But it only takes one time to get HIV
And he was the one that risked that 'one time'!

I know it is not fair, he has enough to cope with without me haranguing him, but I do feel betrayed by his lack of honestly after nearly 30 years together.And what has he got to lose?

I have said I will never leave him and I never will.
And he has never abused me and always has respected me  - although some have suggested that giving me HIV is a form of abuse I do not see it like that.

But WHY did he have sex and probably risky sex with a women in Brazil he did not know and had only met that week, when he had a wife and daughter at home and so much to lose?
Well while he says he used a condom, it had to be risky whatever he says as he got HIV?

When I am in my black days I just want the truth and from him - why did he do it ?

I really do not believe it was due to a burning sexual need, as I have known Barry long enough to know that is not what motivates him ever, nor do I think his sexual needs when we were apart are greater than mine. In fact  I know my sexual libido is more than his with certainty & I have had offers but always said NO!!

Instinctively I think I know why, it was about face ( pride)  - with men it is often about face.
A woman came on to him and quite honestly that was a very rare occurrence to him and he did not want to lose face by turning her down. I know him well enough to know that that would probably be the only motivation that would lead to him having sex with another women other than me.

For a start Barry has never instigated sex, not with me and I know for certain  never with any women before me. He has not - unlike me - actually had sex with many women and even with his first girlfriend it was she that instigated it the first  and every time - he is just psychologically wired that way sexually as he fears ever sexually imposing himself on anyone.

In a way that is great as with Barry you will never find yourself having sex when you do not want it, you will NEVER not feel totally in control of your own sexual needs and your sexuality. but on the other hand it when you have been with someone as long as we have been together it would be nice to be asked at least once in a while, at the very least to feel you were needed by him sexually. You know you are but he never makes the running .

So I know he never did with the person or people he got HIV from either - I do know him very well

He waits for you to instigate it but he finds it almost impossible to say no if it is instigated. Not because he necessarily wants sex but feels he will lose face if he can or does not want to perform if asked  - how stupid but that is how he is.

And lucky for me and for him, the number of women apart from me who have instigated sex with him since we have been together is probably very few - and while maybe he has been unfaithful more than once in the years we have been together that he was away at sea and  I will never know for sure   -  but it is VERY probable that only the women he acquired HIV from has ever instigated sex with him apart from me in over 25 years.

So I know the truth really - but I want him to tell me - I want him to be honest with me??

I have never been sure either that I believe him about the condom as he would not have been expecting or wanting sex so I know he would never carry them. As sex woudl be so far from his mind even when away, especially when away that it would not occur to him to carry a condom. And he is out of practice with even the concept barrier protection altogether as I reached the menopause and felt we did not need it for many years! So the last time he used a condom was probably 20 years ago!

I asked him about that and he said she supplied it and it was too big??
 But can that be true, his penis is not that small, well not too small as to not fit an average condom!!!!!!!

And anyway he would NEVER admit to not using one as he knows how stupid I would feel he was. After all I worked in youth sexual health much of my working life and for most of my life with him - so he knows how angry I would be if he admitted to not using a condom on that sexual encounter that got him HIV.

So I think he is lying through his teeth about that condom. And it makes me so angry that even now he lies to me about that!!

And also I get so mad that even after we found he had HIV he did not 'immediately' come clean about having had sex with someone else.

Which was so stupid and unnecessary as I knew I had not had sex with anyone else since about 1984 long before I was of risk for HIV and I know he knew I had not,  and that I insisted he had a STI test in 1986 before I would EVER have unprotected sex with him, and I had a routine claymidia test around 2000 and as a matter of course was tested for all other STIs so we were both clear then.

And no way had we had HIV for more than 8 years or we would long be dead from AIDS with no treatment or medication!!

So it was a no brainier really.

We both had HIV, he was much more unwell and more progressed to AIDs than me so he had to have had it longer and he had to have had sex with someone else to get it!!

Yes even in his hospital bed he lied -what did he hope to achieve?

And when I have my black days I ask and ask him this repeatedly - why did he continue to lie even when he was in a hospital bed so ill with AIDs & PCP. Why does he still now not tell me the truth and in his own words, why am I left to guess and make assumptions about why the encounter that brought HIV and why no condom and therefore why  this horrible virus ever happened to us??

But I guess I know really why he lied about having ever had sex with anyone else and why he continues to lie about using a condom ...............
And will not tel me why he had sex that time and did not tell me ever really that he had, he let me tell him that the only way he had got HIV was if he had been unfaithful - so I told him!

Because men are all about face. Well sadly face and pride is a big part of Barry self image of himself.

And to admit he was unfaithful at all shattered the image he has of himself as being a fantastic father and dedicated and faithful family man, sadly eventually he had to admit that he had been unfaithful  as you do not get HIV from the AIR!! .

But to admit without my telling him this was the case that  he actually had sex with a comparative stranger in Brazil without even using basic protection would shatter the last illusion he has of himself - that he is always a responsible person!!

It makes me so mad and sad that even now he can not share the truth with me and with no outlet anger turns to depression.

All he would have to do to really help me to cope with our HIV is to come clean - WHAT HAS HE TO LOSE EXCEPT HIS VANITY.
Even if the truth is that he was unfaithful many times, which of course is possible, this is better than him lying to me.
But however much I go on, and on , and on for him to tell me the truth, he will not.
He prefers to keep his illusions about himself and continue to lie and hurt me. He does admit he did it now and where and when but he lets me guess why and the details.
Sadly I love hm anyway, which is why we are still together.

It is a sad situation
The last thing he needs is the stress of me getting at him when I am down 

But living with HIV is so HARD and living with HIV with the person who infected you is very hard.

It is a sort of double whammy - you have to cope with your own sadness and loss at beign HIV but also your partners guilt and you have to learn not to blame - so many of your feeligns you have to carry yourself.

It would be just so EASY to blame Barry, leave him and go round exhonerating myself for my own HIV infection for the rest of my life and blame it on an unfaithful partner!! But it is seldom so simple as that!

Many I know were infected by their partners but few, if any are still with those partners ( except a very few who knew their partners had HIV when they started the relationship and therefore knew that there were risks and were willing to accept that risk.

But I have met no one who like me who acquired HIV  due to a partners infidelity and also an infidelity that they did not come clean about nor admit until they found they had HIV and choose to stay with them and choose to  forgive.

Out of everything I have faced in my life forgiveness is the hardest.
And it does not happen in one go, with forgiveness , like everything in life, you take 2 steps forward and one step back - but if the intention is there you will get there in the end

Thursday, 11 February 2010

Terrence Higgins Trust - yet another failure

Today I tried to get some help for what I am going through. Call me selfish but I honestly thought there would be some help out there .........somewhere.....................but sadly there is none.

Well none I can access locally without traveling literally hundreds of miles to get that support .
and right now I am just not up to doing that travelling

So again I tried local agencies - they said HIV was not in their remit they suggested KPS as the only charity for people with HIV in Cornwall

Of course I have gone to them and try all the time
to get their help and support
I am even a volunteer for them but as yet they have not found me a constructive role as a volunteer - not have I been able to find one with KPS for myself
Yet I so want to be useful to them!!

But sadly KPS, Kernow Positive Support does not understand my situation -
BUT  I will not knock them or anywhere and certainly not here as they do a great job in supporting many people with HIV in Cornwall and sadly there are many but not one that is public or willing to be which on one level I do very much I understand.

So I will not knock KPS but I have not found they can offer me personally anything.
As a fundamental difference we have - between KPS ad myself - is i belve in peer support
And also I feel any agency or support or charity helping people with HIV those they employee with HIV have to be public.

In fact I would go further personally prefer it if they only employed those with HIV.

A stance that it seems that not even THT understands?

But Pozfem UK: the wonderful organization that has offered me the only REAL support I have ever had since being diagnosed HIV, is run and organized by women that are HIV positive only and they are all open about being HIV.

Not always, to everyone in their own lives as to be open in every aspect of your life s difficult for most, but they certainly are to those of us that are living with HIV. They offer peer support. sadly to get their peer support and be part of their group I have to travel outside of Cornwall often to cities hundreds of miles form where I live and right now I jsut do not feel up to it

But PozFem are also activists
They put their money where their mouth is and campaign publicly and openly to improve the lot of women living with HIV and to change policy etc

But if all other agencies do not agree with me that those with HIV working in the HIV area need to be openly HIV and more to the point the agency needs to be publicly campaigning for change and that is their right.

BUT while I accept that it is anyone's choice not to disclose their HIV status if you are a private individual .

It is just not acceptable for me on a personal level that any person with HIV taking money from a job with a HIV support charity is not open in every level of their lives they can possibly be about being HIV themselves. Well at least on those levels that affect theri role as a aid worker for an HIV charity or organisation

If they are not what message does it give the rest of us who live with HIV
That it is fine to be ashamed and to hide it ?? That to live in secrecy and fear is the RIGHT way forward

I know I am in the minority, and perhaps wrong? to feel as I do in Cornwall - as so many have told me this - but that is how I feel
But that does not alter how I feel and I need allies to go public about being HIV in Cornwall

Therefore KPS and all other agencies who do not offer OUT peer support are not able to support me in this for many reasons - that I do on one level understand why they wish to encourage secrecy

- but it is of no use to me than a wet jelly as an individual OUT with HIV in Cornwall

So yet again in desperation I called THT - as THT is the nearest other HIV charity to me i.e Bristol - yet again as since I have been diagnosed I have called them about 4 times and never got anything from them but impatience

This time exactly the same ......................the man I talked to got impatient after what he said was 20 minutes!!!!!!!!!!!!!!!!!!! but I know it was much less. He kept saying how can we move forward from here ??

Move forward - no I was not asking us to 'move forward' I was not asking him  for solutions

I was just asking for some peer support as we can not 'move forward' unless you have a cure for HIV how can you move forward? I am just trying to find a way to live with this and get some peer and empathic support to do so  ???

I thought if I called THT of all HIV organizations I would be talking to others who were also OUT about being HIV!!

NO WAY it seems not !!

As I said to him...I said OK but do you have HIV? Am I talking to someone who understands the full implications of living with HIV? Is this peer support you are offering ?

He basically said - that’s none of your business!! -Oh crap !!

I am talking to yet another one who does not disclose their status either HIV+ or minus? Yet this is someone who is working for a HIV charity

Sorry but I just DO NOT GET IT!!!!
I said by phoning you I have disclosed to you that I am HIV and I personally want to know if the person I am talking to has it too or not? I am perfectly harpy to talk to someone from THT or any charity who does not and happy to talk to you if you say you do but that I am not to disclose it and I will not ( anyway when you ring the THT help line you do not get the persons name so you have no idea who you are talking to anyway
.................................but actually I do think it in the context of my ow personal difficulties with living with HIV is relevant for me to know?

And for me whether the person I am talking to has HIV to or not changes the whole perspective of our conversation.

As what I want and so need is PEER support - not some kind of charity with no empathy
On your bike THT - Terrence Higgins Trust

You might provide some information services but in terms of what I need i.e peer and empathetic support you offer none!!

If those who answer the phones can not even tell those they talk to that they are HIV + or HIV when the person you are talking to introduced themselves with 'I have HIV

Then THT as far as being able to offer me anything - you skink

I am so angry…………… Today and on every other day I have tried your support  - and yet again you provided me with absolutely ZILCH

Also how can we move forward if what you are suggesting is practical solutions and people to contact locally to me ..........when there is no one ?? There is NO ONE in Cornwall who is ever going to be of help to me  re living with HIV

As I have so far tried them all.
As you can see, I started writing on this blog as someone half way sensible and with a brain ......
Nearly 2 years later into my diagnosis of having HIV - I have finally lost it !!!!!!!!!!!!!!!!=
I always sad you have to reach rock bottom to find a way up - hopefully I will now find a way forward 

As the first step is accepting there is no help, support or rather just plain empathy for my situation, for me out there, not for me or my husband actually  if we could be of any use and find  a useful role we in HIV awareness etc we perhaps could cope with that

But no one wants even/especially this from us!

Wednesday, 10 February 2010

Depression has Hit

When I was first diagnosed, after the initial shock I thought I was coping wth this so well.
And I sort of did not understand when some with HIV said it took them 3 to 5 years to accept their diagnosis and to find a way to cope - or that long to decide to come out about being HIV.

Not being out I understood that this was a choice and notal woudl be out abotu being HIV+ or could be due to their own personal situation and circumstanses .
But to be honest it never relay entered my head NOT to be out abotu being HIV+ .
I honeslty could not see how it would be any different form havign a number of lifelong or incurable illnesses?

Call me naive - as I obviously  was and am.
It is to late for me to go back on being out now
And really I do not regret that decision.
What I do regret is that in deciding to be out about being HIV has seemed to have alienated me from all others in my area of the UK - Cornwall - who also have HIV?

Sadly while I knew that living with HIv would not be easy, I naively expected to gain a network of people in Cornwal who were also HIV+ to relate to for peer and mutual support
People I could have a chat with when down , those who I could share the particular aspcts of living with HIV that it is hard to understand if you are not HIV.

And indeed I know I am certainly not at all alone in having HIV in Cornwall. There are loads of us here.
But not one seems to want to relate to me as any kind of friend.
The source of my depression is feeling currently so isolated.

Those who I know who do not have HIV - and that is everyone really I know here in Cornwall an who are near enough to meet face to face, apart from my husband and a couple of others I have met often very briefly - have been great and have tired , but do not really understand, or if they do I do not feel they do.
None have openly at least discriminated or stigmatized me - but at the same time few bother to ever contact me or relate to me anymore, so I feel totally isolated.

And those in Cornwall who do have HIV seem to not want to know me at all becasue I am open .

Its the pits.