HIV and the over 50s in the UK

The Vienna AIDS Conference, currently happening now - which I so wish I could have attended but could not - has led to more awareness of HIV in the older generation and in the UK. I do not have time right now to re-write it for this blog so I have just reproduced my comments I sent to national UK media on this

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Both my husband and I, now 58 and 57 are one of theses statistics as we now live with HIV, we have known for approximately 2.5 to 3 years.

Since my diagnosis I have tired my best as just one individual to raise awareness of the rising rate of HIV in older people and the risks of HIV for those over 50 specifically.

And to draw attention to the fact that HIV has not gone away and new diagnosies are happening every day and amonst all, gay or straight, women and men and in all countries in the world, including the UK.!

To that aim I have since my diagnosis  been in a national newspaper - the People, and a few magazines and on local radio and on Embarrassing Bodies ( channel 4) .

I am sure most who saw me on any of those thought that I was somehow an attention seeker who just wanted to be on the media?

Nothing could be further from the truth.

We have lived for 25 years a VERY quiet life in a smallholding in Cornwall, and that is how we want to live. If it was not for HIV we would never have been known to anyone.

But when I was diagnosed HIV I found it was like joining a secret club. That so many in the UK, and even in Cornwall young and over 40+ have HIV, and the media seems to have let HIV drop through their radar and of no interest,  as if it is only something that is happening in Africa etc!!

Anyway, as to our story.

We did not think we were at risk? And I certainly did not!

Why would I? As I have been married to my husband for 20+ years and faithful to one man, my husband, for over 30 years.

But sadly my husband made a brief - very brief - 'mistake' with a woman when he was approx 50 years old about 8 years ago, acquired HIV and unknown to me, gave it to me.

He sadly had progressed to AIDs before he was diagnosed ( and I already had symptoms and was also near/verging on AIDs) as he never thought one incident in over 25 years of marriage and 30 years of being with me, one person, would lead to HIV.

So he never told me he was unfaithful - out of shame and guilt, and the hope that he could forget his one transgression, not because his aim was he wanted to deceive me, but out of shame hat he had ever done this.

So while it is no excuse that I also did not protect myself as I should have been more aware - as should we all!!

As I had reached the menopause I had long stopped using contraception and while I was/and am  very aware of STIs having worked as a Youth worker with one of my roles sexual and sexual health awareness with young people, I simply did not think I needed to use protection with my husband.

Therefore I, like many women of all ages, I did not have the information to know to protect myself so now at 57 I find I am also HIV positive.

HIV may now be controllable with medication, medication which we are both on, but this does not make it any easier at all.

The medication does have side effects. For me life changing side effects for my husband less but still interferes with his quality of life.

And as infection starting when you are over 50 is a comparatively new thing no one really knows what the prognosis is in the long term for the over 50s. When you are over 50 your immune system is not as good as it is when you are younger, also the Antiretrovaral medications are highly toxic and known to damage liver, heart and kidneys and if you have lived till your 50s theses organs have taken a battering even if you are not a drinker etc - and we are not - and ARVs only delay at best the onset of AIDs and al on ARVs or with HIV are 70% more prone to many cancers than the general population so for us it is a life sentence and a waiting game. We want to survive until our young 21 year old daughter is at least 30, to see her set up, that is our only ambition now.

And HIV is STILL a highly stigmatized illness - I can not share what I am going thorough with other women my age in the same way I may have if I had another illness breast or cervical cancer for instance and this isolates me and makes me feel so very alone.

And for no one is living with HIV something anyone would ever want.

Nor is living and coping with a stigmatized illness such as HIV how we would wish to lead the short years of active life we all  have left when in our 50s.

My message to the over 50s or even the over 45s is:

Don't join us?

Be careful, use protection whoever your sexual partner is. And if you have reason to feel you have ever taken a risk at all.........................

Get TESTED!

If you are 45, 50, or even 80, get tested

As HIV can be treated and controlled and you do not want to get to the stage of AIDs like my husband and I before you get that treatment.

My views on the Election & LibDem/Con Alliance

So what has the outcome of the election, hung parliament and subsequent LibDem/Conservative coalition got to do with living with HIV.

Everything is the answer 

Because with HIV government policies I believe will directly affect my life,and the lives of many other vulnerable, poor disabled , ill people especially in the area of Health care and social and other services, social care,  benefits,  Disability Living Allowance in particular and in so many other areas

I might as well post what I have written elsewhere as an explanation of my views:

I lived through the Thatcher years and the Labour government before that and through the hung parliament in between, as I am now 57

As a young person who left school at 15- in 1968 from then through most of my 20s I did unskilled labour until I went to 'night school ' and studied and eventually qualified as a teacher/youth worker I experienced low paid, often  manual work in very poor conditions in the 1970s

I then worked in the public sector as a professional youth and community worker worker from 1977 to 1986 in inner city London, both for the Local  Authority and then for a grant supported charity. Then in Cornwall from 1986 for Cornwall County Youth service, working with children from low income families and Cornwall as a very poor and rural Community was left reeling from the Thatcher years, even if you had a job etc living in Cornwall you suffered from poor services etc - we still do.

And so in London and Cornwall I saw first hand the devastation to lives that Thatcher policies caused to those of low incomes and to communities.

Yet at the same time there were those making a financial 'killing' out of it - hence the term Yuppies etc .

So if you were among the privileged who befitted financially under Maggie Thatchers  rule you probably never saw - and perhaps did not care?

............. what it was doing to those who were living on the knife edge of poverty or below to whom just a few pounds a week and loss of services made a huge difference to the vulnerable.

In my 20s I also lived through the civil unrest and strikes in London that preceded MT government, that led to piles of rubbish higher than our houses infested with rats, the 3 day week, power cuts, the dead not being buried etc - which to be fair started in a Labour reign but was made worse by a hung parliament as far as I recall.

Which led to the dawn of new Labour.

I was actually lucky - or not lucky as I worked very hard - to always have a job and while not a high earner I was always waged during all theses times and so while I saw what dire situations people were in as I worked throughout - even managed to keep my job during the 3 day week as a young person in my 20s - so I was also I guess privileged,

But I was never blind!

So if I look into the past governments I have directly experienced, New Labour did better in terms of the welfare of ordinary people and the disadvantaged than any. There is always room for improvement and I did not like what happened re the Iraq war and other things - but then the Cons would almost certainly have taken us into that war anyway -

But I dread a return of a Conservative gov far more than a Labour - I was hopping against all logic and hope for Lib Dems and am disappointed as I felt that LD combined with Lab might be a winning team to get it right

i.e get the balance that has up to this point been missing in our polarized party politics type governments.

Now all I can hope for is the presence of LibDems moderates what I know a Conservative government is capable of doing to the welfare of the vulnerable, disabled and poor

A group that I due to life events I now sadly now belong

So now I am not only going to see what happens first hand as a Youth and Community Worker. 

Now as a disabled person with a horrible virus called HIV  which affects my ability to work, I will experience what this government brings directly, and I find it very scary.

My torn ligaments - very depressing

 On the 29/3/10 I fell and tore the ligaments in my right ankle - not a problem you may think ?/ No BIG Deal!!
But try having an ankle fusion on the other ankle, Living with HIV and working for yourself where whether you are disabled or not - you have no choice - you have to work even if you have to crawl to do it!!

Thanks all - I am not completely stuck in the house but as I live up an unmade track which I cant walk down - and it only gets me to a village that has nothing not even a shop anyway!! and with an ankle fusion on my left ankle which means I have to drive an automatic car and now ligaments on my right I am pretty much dependent on my husband right now to drive me everywhere, and I hate being dependent like this.

But what is depressing me so much is from being a very fit person who rode at least 3 times a week,worked & led an active life, walked my dogs and cycled that it then took me about 2 years to be able to walk reasonably at all after the accident then the fusion means I will always need a stick at times then while recovering from the fusion the HIV diagnosis came which knocked me for six - just such a shock as I am sure you know.

But then I was in the last 8 months really being proactive and fighting back and doing really well. My ankle fusion pain had settled down and I was going to aqua aerobics, Gym, Zumba and a choir & had lost a bit of weight that I really needed to do as it helps my ankles and knees to be lighter....

But then on the 29/3 I fell and tore my ligament in the other leg ankle and have not been able to do any of my activities except the choir - and then my husband has to take me, I have put on a stone and missed the last PozFem meeting in London: http://www.poz-fem-uk.org/

Because  I felt could not go on the train & carry my bags on my own, not could I do the walking involved for the itinerary.

The feeling of real depression today is I am realizing that my ligament is no better - in fact over the last few days more painful for some reason - and it will take months to get right again & I can do nothing much to make it right as ligaments just take time - but I fear it has undone all the progress I had made.

I'll get over it yes and troupe on, but today I am really fed up - not I feel clinically depressed but really fed up!!!


I may sound very needy right now & so apologize that I do - but I really did spend many years supporting others and not asking anyone for support....

My my mum was right when she used to say
what goes around comes around?

As on one hand I feel bad that I seem to post my needs for support online far too often when in the past I never would have at all .

but at the same time I have supported many, many people online over the years, in fact since 1998 . Some may not know this to be so - but it is so.

But I need support myself now and maybe with HIV - ------

I feel that unless I can get a complete handle on it that works 100% and allows me to live in complete harmony with the fact I have HIV? I so hope so - but I have to accept I may always now be needy online.

BUT

I really do appreciate  all of you that have over the last year or so responded to my posts online and here .

Especially as I know each and every one of you have your own stuff to bear - physical or emotional/mental - and that you are all very brave people.

I may sound very needy right now & so apologize that I do - but I really did spend many years supporting others and not asking anyone for support....

My my mum was right when she used to say
what goes around comes around?

As on one hand I feel bad that I seem to post my needs for support online far too often when in the past I never would have at all .

but at the same time I have supported many, many people online over the years, in fact since 1998 . Some may not know this to be so - but it is so.

But I need support myself now and maybe with HIV - ------

Unless I can get a complete handle on it that works 100% and allows me to live in complete harmony with the fact I have HIV? I so hope so - but I have to accept I may always now be needy online

Love you all 

GET A LIFE - Twitter ignorance & HIV Jokes!!!

Last night I stupidly tried to tackle HIV ignorance on Twitter.

• I did not mean to as I had other reasons  to go on Twitter
• As I often  look online at what was being said about HIV as I have become - without actualy planning too - an online HIV activist
•  to find the latest research and knowledge being talked about HIV
• so I did this last night, so I was up to date, before going to the HIV meeting I planned to go to today.

So after looking on Google etc I typed in 'HIV' on Twitter and did a search for anything relating to HIV.

I did find some good links and good up to date  information to knowledge and research but amongst this was appalled at the ignorance and jokes also being said on twitter about HIV and people with HIV. 
Sadly I live a sheltered life in the country and  truly did not really believe such ignorance still existed & that such horrible jokes could be made at the expense of those with HIV


Most of it was shocking but just too 'out there' to even bother with. But a couple of very silly jokes I could not help twittering back about.


I do not usually do this but I was pretty appalled by what I read and by young and intelligence people 
Yes I should not have as you should not join in as if people have theses views are you ever going to change them?


So one young woman got back to me and as she said she was a trainee nurse and as I admired her for  getting back to me I thought it was worth trying to tell her the facts and how damaging her joke had been ....and how wrong her assumptions were factually about HIV transmission


I so wish I had not bothered as I have ended up very hurt.
I really thought she was just misinformed so I tried but whatever she said she seemed to take the wrong way as if I was he enemy?? That nothing I said as someone with HIV could  be believed - like all people with HIV want to pass HIV on and are somehow to blame for their having HIV??


I should have given up, but I could see her profile online on myspace & Twitter &  that she had two young children and while she said on twitter she was a trainee nurse I was not sure but she did have a business like me as a designer 

and I felt if she had bothered to get back - maybe, just maybe , she did want to know?

But in the end I was accused by her  of being  ' like you're bored with shit to do'
In other words
GET A LIFE!

I have been told far worse but this young woman really got to me, sadly she made me cry,  where others have not.

I just so just wanted to explain where it really is and to educate.

As if she is really to be a nurse, ignorance like this will actually hurt her in the end - she may not know that yet but it will.  

If she is not a trainee nurse she has  children and what is she bringing them up to believe about HIV. Does she not realize that HIV will be any current child's problem in the future and  they need to know the realities of it - not to learn to dismiss HIV with a joke??

• And she is right in a way as HIV IS my life - it is all of my life. I defy anyone with HIV not to find having HIV penetrates every single  inch of your life. Does she and others not realize how sad I am that my life in my 50s has now become HIV????

But I still have a business to run a family and  I have so much to do, does this person think I also WANT to be doing what I do re HIV? or care - no! of course not. If I did not have HIV my life would be very different

But I care when people put out stuff that perpetuates stigma and discrimination  - and I care more if they really and truly believe what they are saying and are not open to investigate to find out the reality.


Do they have any idea what it is like to live with HIV ? Of course not!!
 And on top of that how it is to be made a joke of. Nor do they seem to  want to know the facts

This person who said she was a trainee nurse, yet she made a joke about HIV that suggested that to drink out of the same drink as someone with HIV was a risk and would not believe that saliva was NOT a risk ? I thought everyone knew that saliva is not ?

If a trainee nurse perpetuates such fear and misinformation - what does the rest of the population of the world truly believe about HIV ?
When people talk to me that I know are they lying to me about  what they really believe to protect me and my feelings?

- but secretly underneath see all of us with HIV as a threat??

• Also can you imagine what it would be like as someone with HIV to be nursed by a nurse that is so ignorant that thinks HIV can be passed on so easily and treats every patient she has with HIV as a dangerous threat to herself??
•  
• Not saying she or any nurse or medical professional shudl not protect themselves - I want them to protect themselves
• But there is a big difference form protecting yourself and getting your facts so wrong you think you are at risk from saliva or any ordinary human contact with someone with HIV

My HIV nurse who takes my bloods every three months who is in her 50s herself and been doing HIV nursing for over 20 years does not even bother to wear gloves when she takes our blood!


She knows she is of NO risk - so why are not student nurses told the facts?


Yes they have to protect themselves. As someone with HIV the last thing in the world I would ever want would be a nurse - or anyone - to get HIV from me BUT I would never put them at risk because I know the facts.

But I also do not want to be treated like a pariah by medical staff if I have to go to hospital!!

To be presented as dangerous even to drink out of a can or cup with someone - this is what this person said on twitter that I felt I had to challenge. 

Of course that was not ALL the point as even though I know no one is of any risk if they shared a can of drink with me or anyone with HIV, the joke was that someone with HIV might offer a can of drink to someone and have a laugh as they shared it.

• Yet this would not be at all funny to me or anyone sane with HIV
• Nor would anyone with HIV share cans with anyone else usually, not only so as not to embarrass the other person but also because with a lowered immune system
• We with HIV are of more danger from sharing cups, cans or anything than anyone without HIV is sharing with US!!!
•  I so wish now  I had not bothered - what was the use - people are never going to believe someone who has HIV.

What HURTS me most is that some seem to think we WANT to infect others and are a walking infection reserve with no morals or care for others????

And that I tell lies - that I would tell anyone that saliva was not a risk if it was????? or would ell anyone any fact about HIV that was not totally so??

OK then
Back to my life


And YES I do have a life

Pozfem meeting in London - did not make it

This is the first time I did not make a PozFem meeting: http://www.poz-fem-uk.org/

I am now very sad!

I hate traveling and go through a whole gamete of fear every time I wish to go to a meeting more than 3 hours travel away from where I live in Cornwall UK

And living in Cornwall everything is more than 3 hours travel for me - but I usually make it.

But this time it seemed stacked against me as 2 weeks ago  fell & tore my ligament in my good leg. I stil can not walk due to my other leg being damaged by an accident -  But I still was going to try to make it .

Then this morning I woke up at 3pm with vomiting and the shits. No don't tell me it was nerves because it was not. Even though it is far too late to get the train I still have this and can not go much further than next to my toilet - Yes its a bug but also before I had HIV I did not get bugs I was very healthy.

I am so sorry I cant be there this weekend - feel so useless right now

Love to all at Pozfem

You live and learn - honesty

I might not have posted my previous post if I had not so graphically been re- educated on the desire for some men not to be honest with their women. But ?
Are we also honest with our men?

Yes I was - totally - and beginning to feel that I may have been the mug?
As I was always honest with Barry but perhaps not as much with previous partners that I did not trust  nor had made any commitment to

BUT that was many years ago.

When I  met Barry I trusted Barry totally, and I have known him over 30+ years but we did not commit to each other until I was 32 - I am now 57.

But was I a mug? Yes I was even after over 20+ years in a relationship and a marriage in our case, I realize  years later you can never trust ( really can you ever?)

You can love but trust is something else - after all he did betray my trust - by being unfaithful and then not telling me he was - the icing on the cake is that he got HIV from that 'encounter' and gave it to me.

But even I never realized until recently how much anyone in any longer term relationship would/could be dishonest to their partner.

As I  said - you live and learn   - I hope others learn before it is too late as it is for me.


I never really took in  how much Barry was in fact dishonest to me until recently. Despite that he was unfaithful never told me and did not tell me he had been unfaithful until he had AIDS and PCP! And then not until I questioned him !!

I still trusted him - still do in a way!

I knew very well it could happen in a non committed relationship - but I felt I was immune in my very long term relationship with my partner - how wrong can someone be ??  

MY MESSAGE TO YOU - NEVER GET COMPLACENT!
No one is immune from dishonesty in any relationship - HOWEVER MUCH YOU LOVE THEM AND HOWEVER MUCH YOU WILL NEVER LEAVE THEM - DO NOT GET COMPLACENT!!
Go into everything with your eyes open!

It does not mean you should leave them - that is totally up to you - but my message is ....
be aware!!

Over the last 4 days this has been highlighted as  I have been told or involved in the following situations

The First Story

One woman I have known for over 20 years - she is a twice a grandmother.
But a very young & very attractive  grandmother being only mid 40s slim, attractive and being single for some time wanted to have a new relationship -

So she did in that she met someone through her work.

But shockingly found after some time she was being lied to by her new partner about even his real name ? nor his true address and his status, or  as to whether he is with someone else or not .


She only found out what his true name address and other details was the other night when he had a very serious asthma attack and she saved his life - literally she did  - by getting him to hospital in time - then in A & E with her there he had to come clean and admit his real name address etc for his medical records!!!

He is not young - 52 -  nor is she is young or inexperienced  i.e 43 and a grandmother twice already-

So why do men - and women -  feel they have to lie ?? If they lie like this how can we ever be sure they are not lying about their sexual heath?

The second story.

Another friend of mine who is also in her 40s but going out with someone in their late 20s noticed a blister on his penis.
She is not at all unaware or at all ignorant or uninformed  so of course when she noticed it she asked him and he said .....................

I caught it in my zip!

That time she believed him - why? because we believe those we have intimate relationships with who look in our eyes and tell us something is so......men or women we WANT to believe don't we?



But he got the same blisters again a few months later - he also said again  - I caught it in my zip!


This time she knew it was total crap - it was herpes of course!
 She knows it is but he has still not admitted it - nor agreed yet to go to the GU clinic
And to be honest she has not either through fear I guess of any disclosure consequences.

THIS TO ME DEMONSTRATES  - We do not have control of our sexual health as women - or as men  perhaps ?
Will we ever?

Well not until we are honest with each other!

How HIV infects Women

It was previously thought that HIV only infected women through vaginal sex  if they had a tear or sore in their vagina. 

It was often suggested that this tear or sore could be from 'rough sex' or from the woman having another sexually transmitted illness or being a drug user or unwell in general.

Sadly this made women who got the virus through unprotected vaginal sex  feel somehow even more responsible for the fact they acquired HIV than they might be. 

But it takes two you know !! Always has always will!!!

Yet the latest research could explain why all women acquire the virus more easily than men and now more often.

YES I KNOW WE SHOULD ALL USE SAFER SEX AND  A CONDOM

But the reality is that even in the so called developed world ( I live in the UK) women DO NOT have complete control over their sexual lives and the use of condoms etc.


This was even true for me .

As a married women living in the UK I thought I had consensual if not complete control over our lives and at least our sexual lives!

but did I really!

My husband was a seaman, he came home to me and wanted sex after being months away, of course I wanted sex too, as it was not only him that had been on their own for the months he was away.

But  I prided myself in being a 'liberated/intelligent/educated/knowledgeable woman
And so I asked
Every single  time he came home to me I asked - honestly I asked every time to which he will now confirm that I asked:
'Have you had sex with anyone else while away'

EVERY TIME - He looked me in the eyes and said NO!!! - every single time he came home in over 25+ years!

And I believed him, if he said he had not - then he had not!!
And so even as aware as I was I did not think there was any reason to use a condom.

As even before I reached the menopause I was open to have more children although it never happened and after the menopause I did not think their was any reason to use protection either  .

But believe me had he ever said he had has sex with anyone else - I would NOT (within reason) have left him, but I would have had the knowledge to protect myself and I would have.

So why you may ask did I not use safe sex anyway?
Well I did not- he was the father of my only child, we had at that point been together over 20 years, he said - looking into my eyes -  he had taken no risk - ever - so I believed him!

I blame my conditioning as a woman and the lack of power all women have in all relationships &  especially sexual relationships between men and women

plus how HIV transmission is now being criminalized does not help us:
See Alice Welbourn on this: http://www.sophiaforum.net/resources/WelbournIWDMarch09.pdf

Anyway it has now been found that this is not the case

It is NOT so that is we get HIV it is somehow not only our fault if we get HIV because we did not insist on a condom but also because we were somehow already 'infected, sullied, vulnerable! - because our vagina has a tear or we already had a STI!
OUR FAULT OF COURSE!



NO - THIS IS SO CRAP

When are ALL heterosexual men going to learn they have responsibilities for theirs and their partners sexual health too??? If we do NOT have the right information how can we make the right choices?

Any woman can get infected by ordinary sexual intercourse because normal cells in the vagina, the epithelial cells, allow the HIV virus to get through.

http://www.usnews.com/health/family-health/womens-health/articles/2010/04/08/more-clues-emerge-on-how-hiv-infects-women.html

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.: http://en.wikipedia.org/wiki/PHP


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 http://www.poz-fem-uk.org/ 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.