Thursday, 22 April 2010

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:

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.


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

Thursday, 15 April 2010

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

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:

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

Monday, 12 April 2010

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 ??  

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 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.

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:

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!


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.