ADRIENNE'S HIV BLOG – Hivine's Weblog

HIVINE is written by HIV positive women but still with a sense of humour

Cath’s story

This is my story……

At the beginning of 1982 I was treated with infected blood.  At the time it could have saved my life as I was born with a bleeding disorder, called von Willebrands Disease.  Without treatment I can bleed for hours or days from a cut or from a nose bleed.  I may have received the infected blood through a transfusion of whole blood or a product made from blood.  It may have been in hospital or at home; I could have injected it into myself or had it given to me by a doctor.  My parents or my sister could have helped.  It took my family a long time to come to terms with what happened to me and it has taken me even longer.  And yet, I am very lucky to still be able to tell my story.

Three years after I’d been infected I was given the devastating news.  I was twenty years old and half way through my training as a nurse.  Fear of AIDS was at fever pitch.  Tragic stories were on every news programme and in every paper.  Stories of people being thrown out of their homes and jobs.  People dying in droves.  Stories of people being rejected when they disclosed their status.  Stories of people being burned out of their homes; their friends and neighbours turning on them.  Their houses daubed with grafitti.  Stories of children being turned away from school.

I was working with people who weren’t prepared to care for someone in my shoes.  As far as they were concerned they didn’t get paid enough.  They were scared.  I understood that.  I was terrified.  I walked around with this secret and I couldn’t tell anyone.  The few people I could trust to talk to were walking down the same scary road as myself. 

I outlived the early expiry dates.  I was given twelve to eighteen months initially.

And then came the AIDS defining illnesses, such as pneumonia.  I also contracted Hepatitis B from a blood transfusion in 1987 and was off sick for seven months.  It also delayed me sitting for my final exams for general nursing.  A bout of pneumonia delayed me completing psychiatric nurse training by twelve months also.  It was only as time went on and I became more ill for more of the time that I knew the inevitable had arrived.  I retired on medical grounds at the age of 25.

I prepared myself for my decline by making music for my funeral and by writing a will.  I bought a campervan and travelled across Europe.  Going on those last holidays.  I looked at everything with an eye of ‘this is the last time I’ll ever see this’.
I took photographs of everything wanting to remember it just as it was.  The times when I was ill and the times when I was expected to get more ill.  Too ill to get up.  Too ill to travel.  Too ill to think.  Too ill to do anything.  I would flick through those photographs and remember.

This decline in my health happened many times.  And was complicated further by my having contracted Hepatitis C also.  I have had three internal bleeds as a result of the liver and stomach damage caused by the virus which proved difficult to stop because of my bleeding disorder.  But despite this I sought counselling to come to terms with this life of mine. And over the years the medication had improved as well. These two things have enabled me to have some of my independence and dignity back.

 I had survived the days when treatments were unavailable.  I had taken AZT for six years , starting in 1990.   AZT was the first drug successful at combatting some of the HIV disease and prevent it developing into AIDS.  For some people it was more toxic than the HIV.  Both were capable in equal measure of killing you.  There was so little known about the drug’s side effects and so much still had to be learnt about the virus itself.

I was lucky to be living in a country where treatment is free at source.  Lucky to be born in a ‘first world’ country.  A developed country.  A rich country.  There are many more tragic stories from around the world than my story.

Okay, it’s easy to pity me.  I was one of the unfortunates, wasn’t I?  To receive HIV and other viruses through blood products, when I already had a battle on my hands with my bleeding disorder.  And I still have to manage my bleeds and inject myself with treatment twice weekly.  More if I bleed, which is two or three times a month nowadays.

But I don’t want pity.  The virus doesn’t decide who to infect.  It doesn’t choose someone because of the way they live their life.  Or the way you make love.

There have been so many changes in the twenty two years of my knowing my status.  The hardest thing about my journey has been learning to trust life again.  Learning to live again.  It’s hard to forget the days when our government proposed rounding all the people with HIV up and putting us on a deserted island off the coast of Scotland.

Medication has changed things too.  The things I have had to swallow when I’ve been in no fit state to even want to eat or drink.  Swallowing handfuls of pills that have given me a hump on my back and stripped all the fat from my legs.  Diarrhoea and loss of appetite are the most common side effects, but each combination has a list of side effects as long as an arm.  Each regime has its own directions which need to be strictly adhered to so as to not allow the virus any room to multiply.  Swallowing pills which may not work and at the same time stop any chance of holding on to a sense of normality.  They’d give me more problems than I started off with sometimes.  Take this one with food; and that one an hour before food.  This one will make you feel ill but you’ll adjust over the next couple of months.  Take six three times a day.  Keep taking the pills even if they force you to sit on the toilet all day and lose loads of weight.  With one I couldn’t drink grapefruit juice as it caused horrendous stomach cramps.

Not knowing what the next year was going to bring; or the next illness was going to bring.  I’ve never had a year when I haven’t been ill and ended up in hospital at least once.  Through the counselling years and the crying years.  The angry years and the running away from it all years.  Looking for some way to feel okay.  To feel able to live a life that is so far removed from my adolescent plans and dreams and expectations despite having had them so close that I could taste them.

I am surprised to be still riding the life cycle; with a pavement in front of me and a bumpy road behind.  I live a full life which incorporates voluntary and community work as well as several rewarding hobbies.  I play pool for Lancashire as well as in a local league and have endeavoured to keep my mind and body as active as I can.  There’s nothing in my life that can’t make way, though, for a bout of illness, a bleeding episode or a change in my medication regime.  I also have good friends and a loving family.  I do lots of talks to groups, such as nurses and youth groups, trying to increase awareness about HIV.  I’m involved in putting on the Red Ribbon Cabaret every year in Preston which aims to raise awareness and funds for local HIV charities. 

I am also a very spiritual person and believe that this difficult path is mine for a reason.  Also, I believe that I have spent too long worrying about what may happen and would prefer these days to act in order that together we can somehow slow down the rising infection rate.

When I’m well I enjoy walks with my dog, Lara, who’s a potty boxer.  And I also enjoy meditating, writing and reading.  I’ve had to over the years.  Also, it’s the desire I have to find a place where I can be at peace with myself and my journey.  To be okay with myself.  An acceptance that there’s a reason why I’m still here.  I’ve felt guilty for too long about being angry that I couldn’t be the mother I wanted to be or the worker I was and should still be.  I’ve attended so many funerals over the years due to HIV and they’re just the tip of the iceberg.

With so many tragedies around the world because of HIV , because of the lack of understanding, lack of funds or simply the lack of a will to change behaviour there’s a need for each and every one of us to connect with a strangers story just as you have done with my story.  And I thank you for taking the time to. X   

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8 Comments»

  hivine wrote @

I hope this blog will give all you ‘invisible women’ as we are often termed, the opportunity to express your true feelings about what it is really like to live with HIV – or more appropriately the other way round – what it is really like to have HIV live with you, because after all, HIV is an uninvited guest and I for one certainly did not invite it to live with me.
I also hope that this blog will give rise to some humour. I know that living with HIV or having HIV live with you, is not in the least bit funny, but like the age old joke about people in the north (and I can say this being a northener) always having a sense of humour because you have to have a sense of humour to live there in the first place, is a bit like living with HIV. You have to have a sense of humour otherwise you will go under and not survive and laughter is the best combination therapy of all. So come on all you positive girls, women and grannies out there. Make me laugh, make us all laugh because there is a very fine line between laughter and tears.
Adrienne

  hivine wrote @

This blog came about and is called hivine because I was asked to speak on BBC Radio 2 on the Jeremy Vine show about what it is like to live with HIV . On the eve of the broadcast I am now having my doubts about coming out to the world – or at least to the listeners of The Jeremy Vine Show , but someone’s got to do it!!

  Sarah wrote @

Hi
I’ve just listened to the Jeremy Vine show and I thought that you were both brilliant and also very brave. It was a great show, very informative, touching and sad in places. I wish you both the very best for the future – good luck with the web site. Sarah

  Willo Williams wrote @

Dear Catherine

Another incredible story of fortitude and resilience in the face of a devastating illness. It was tremendously courageous of you and Adrienne to ‘appear’ on the Jeremy Vine show. I have a friend who has had HIV for approximately the same length of time as you: she has recently married a lovely understanding man and although she also has an amazing story to tell, she cannot ‘come out’ as she fears the reaction of her husband’s family. Living with HIV must be bad enough without having to shroud your life in secrecy too. I thought (hoped) we had come out of the dark ages when mankind (or not so kind) went around crying ‘leper’!

You are doing a wonderful thing in bringing this out in the open and thus doing your bit to educate people, not only in compassion and tolerance, but also in the ways the virus can be contracted. There is so much stigma surrounding this illness, but you and Adrienne are doing a great job in dispelling the myths.

With all best wishes

Willo

  Annie wrote @

Dear Cath

I’ve just read your story and felt compelled to reply as there are many similarities with my own.

Like you, I started my sentence for a crime I did not commit at a time when the prognosis was terrifying. So much so that I couldn’t contemplate what my future (such as it was) might hold. I was 26 years old and had unwittingly had a relationship with an intravenous drug user. The rest, as they say, is history.

Like you, I have run the gauntlet of the various toxic medications and have by turns been made more ill by some, but most importantly, kept alive by others. I made a conscious decision, once I could think straight about the whole ghastly situation, to try to control this uninvited guest to my life, rather than allowing it to control me. Mostly, I have succeeded with this, other than in one heartbreaking area. I had always assumed (probably without thinking about it really) that I would become someone’s mother. This really has been the part of my sentence that I have found most difficult to deal with, and now, having started the menopause, I need to come to terms with it once and for all.

Other than that, I think I lead a relatively “normal” life. I decided years ago that if I couldn’t do certain things I would try and do others. So I went back to university, gained more qualifications and have put my energies into my career. In an effort to give my health the best possible chance I joined a gym and try to keep myself as fit as I can. I work hard and I’m sure this helps with my positive mental attitude and my “wellness”. Like you, I feel lucky to live somewhere where the drugs have always been readily available and so far, the timing of my sentence has been favourable in that the research continues to be able to keep me going. As I become resistant to one drug or one group of drugs, so far there has always been something to replace whatever is no longer doing me any good. Long may that situation continue.

I even started to make serious financial plans for my retirement a few years ago – something which at one stage I wouldn’t have contemplated. I celebrated my 30th birthday; my 40th birthday and I have every intention of celebrating my 50th in some style in five years time! The uninvited guest has been at each of my parties and while I don’t yet feel ready to raise a glass to it or even welcome it, I am able to tolerate its presence. Thwart it even by saying “look, I’m still here!”

Well done Cath, for being so brave and speaking up on Jeremy’s programme last week. You and Adrienne have started something which I hope can help women in our situation everywhere.

You’re both in my thoughts as I work and run to save my own life.

Annie xx

  caroline wrote @

Dear Cath
After hearing you on Jeremy Vine, I felt I just had to email you. At the monent I am talking and emailing everone that will listen to me.
I am also a woman that has lived with HIV but for diffrent reasons than yourself,in 1982 my daughter was given a blood transfusion,because they said she was anaemic,from then on she became very ill very quickly with at first bronchial pneumonia ,also the very high fevers that you mentioned, the virus then went to her brain and she died in 1983 aged just six years old. From that time to this I have never been given any answers.A few months ago I was put in touch with the Elieen Trust who then passed my case on to The Department of Health,who have been most unhelpful.My problem is that I am having terrible trouble tracking down my daughters records.I think that I am going to have to live with the fact that I will never know the truth.
I remember my then GP mentioned just after my daughter died that he thought the primary cause of my daughters death had been acquired immune deficiency,I had no idea at the time what that meant.Now with people like yourself speaking out and explaing the symptoms,I don’t feel so alone in my quest.
If you or anyone out there could give me some advise as where to go from here I would be very grateful.
Keep up the good work
Best wishes
Caroline

  cathandlara wrote @

Dear Caroline,

I think there is a date before which HIV deaths related to blood transfusions cannot be compensated. I am not 100% sure but I do know that relatives of haemophiliacs who died in the very early days as a result of HIV or other blood borne viruses have not been ‘compensated’ along with those still alive. Or even those that have died since the cut off point. The further back you go the harder it is to establish the full facts, I would presume.

And there is no compensation that can account for your loss. Believe me. Equivalent of three years salary if I’d remained a basic staff nurse. Who, where and how would I have been had these things not knocked on my door? Questions you must still ask about your daughter, God Bless.

Sorry it’s taken a while to reply. I hate computers and struggle to have a civil relationship with mine.

God Bless you too. And everyones’ inspiring and supportive feedback.

Love, Cath x

  Arnulfo Mondelli wrote @

Thanks for posting. Good to see that not everyone is using RSS feeds to build their blogs 😉


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