Saturday, 31 May 2008

But is there any Point???

I think I have just been taught a lesson in the possible futility of telling everyone your situation in order to educate and hope that those you love do not end up with this thing like you....

Someone I am very close to and knows our situation and that I am trying to have a story published in the papers and why ..........................

Rang up to say she had a few drinks and is not sure whether she had protected sex with someone she does not know too well

- she thinks she did but can not be sure but took a 'morning after' pill just in case to avoid pregnancy.

I said what about an HIV test ??- obviously not for a week or two as with HIV it will not show up until you sero -convert - but its best to have one in a while to be sure. She said that she can't have an HIV test every time she just may have made a mistake!!

I agreed it seemed a bit much to do this!!!!! but afterwards I realised that if anyone is concerned enough to take a pill to avoid pregnancy every time they may have made a mistake, even if not totally sure you did make that mistake ..........................then I guess I feel they, and everyone in that position should be having an HIV and STD test too!!

It does not make sense really to protect yourself against pregnancy but not to make sure you have not picked up any STDs including HIV!! This is exactly why I tell people I love - and even those I do not even know very well - so they will get an HIV test and EVERY time they make a mistake - or even are not sure if they made that mistake - and of course not ever make mistakes. As if she did have an STD or HIV the sooner you know the better.

But if it does not work with someone I am close to and knows my situation well and is so upset for me that I have HIV - how is it going to work with those I do not even know??

Maybe I am going to have to rethink?

The Press - What do I want to say??? If only they would listen!!!!

I wrote this below about what I wanted to say to the Media if I can get in any !!

Points I want to make Re HIV in General - Notes –
Monday, 26 May 2008

1./The necessity for routine testing:

If you are ill in the UK and go to your GP ......................... you may get some tests

If you go with perhaps:

  • severe flue like symptoms, high temperature nausea, diarrhoea and a rash ( which many get when they sero-convert i.e become HIV positive up to a month 8 weeks after initial infection with HIV) or on going symptoms of extreme fatigue, nausea, diarrhoea, rapid weight loss or gain, swollen glands, ( psoriasis is very common for those with HIV, plus unexplained rashes and very dry skin ) constant infections, memory loss, eye problems, thrush, cystitis, breathing problems, heart pain, skin problems etc

(all can be part of living with HIV if you are untreated, I had both a severe seroconversion illness and then many of those ongoing symptoms but was often ignored by my doctor and when I was given any tests it was NEVER an HIV test, as you have to request this specifically and it never occured to me or my GP - yet I have been HIV + for some years!!)

You will however quite often get as a first line of investigation tests that may include tests for:

  • diabetes, thyroid, cholesterol – under or overactive, anaemia, electrolytes, in older men tests for prostrate cancer or enlargement, a chest x ray for breathing problems, women may have a cervical smear and or a mammogram, cystitis, blood tests for blood counts and an any number of other tests depending on your symptoms.

My husband had most of theses, except the ones for women's bits – and I have also had many of them over the last year or two but nothing showed up to explain why we both did not feel well!!

The one test YOU DO NOT GET UNLESS YOU ASK FOR IT IS A HIV TEST??? And HIV DOES NOT show up on any of theses other tests!!!

There used to be some reasons why you may not want to test people without them asking for a test and have to tell people they had HIV without them actively wanting to know –

  • As there was no real help for those with HIV and everyone without treatment was likely to/would eventually get AIDs and die -and knowing you had HIV, before there was effective meds to keep AIDs at bay, would not then change the outcome - but it could have prevented you infecting others!!
  • There was also the fact that HIV was seen as being something only people in high risk groups got and therefore only those who took sexual risks i.e gay men, those who had anal intercourse, multi consecutive partners, not using safer sex, changing partners frequently, or used drugs would get .
  • So for a doctor to suggest a test to someone who did not feel they had taken a risk themselves for HIV, was seen as a doctor over stepping a persons privacy and perhaps undermining their reputation.

But theses days we could all be at risk - and in the UK, when HIV Antiretrovirals are available that will keep you as healthy as possible with HIV there is no rational I can think of for not doing routine testing – except perhaps the stigma?

As if you have HIV – you are actually more likely to get all of theses health problems anyway i.e. thyroid, diabetes, heart/artery problems, abnormal cholesterol, and cancers of many kinds happen more often to even treated HIV people - so the more medical care you get and as early as possible, the better!!

With medication you have some chance of avoiding the worst of them and living out the rest of your natural lifespan, and has healthily as possible without too many of the complications of HIV such as the cancers, eye problems, brain damage, opportunistic infections that HIV people do get even before they have full blown AIDs

Without HIV medication you will still now eventually progress to AIDs and you will die!! There is still no other end to untreated HIV!! So it makes real sense to get a test and know as soon as possible?

I actually suspect that without routine testing people may well be dying of HIV as a primary cause but on their death certificate will go things like pneumonia, heart disease, artery disease, cancers, as the cause of death. But the reason they had theses illnesses was because they had HIV – because they were not tested for this would be a fact that not even their doctors knew

2./Telling our Story

I hope that telling our story will be told in the way that would be of any use to us in trying to help others avoid our situation, or to open the debate about changing HIV testing in this country, reducing stigma and 'educating' ordinary heterosexual couples and married people that this IS an issue for them to be thinking about.

3./At least a 3rd statistically who have HIV in the UK do not know they have HIV!!!

And theses are the ‘official’ statistics so you can be sure the number is probably higher.

Older heterosexual people- over 40 - are now statistically more at risk of STDs in general and probably HIV

When those of us over 40 they learned about STDs the risks were fewer and HIV did not exist, or was rare in the heterosexual community. Taking precautions against HIV is therefore NOT second nature to the 40 and above generation of heterosexuals

Many older heterosexual people are sexually again active and changing partners in their 40s upwards – maybe due to a death of their long term partner, divorce or perhaps simply boredom or wanting to have other relationships after so long with one person.

But in my opinion they may not consider it necessary to request an HIV test. We did not either!!

And I used to work as a youth worker running HIV awareness events for heterosexual young people and even I did not consider it until my husband was so ill I felt nothing else could explain his symptoms

My husband nearly died because there is no routine testing for HIV and currently in the UK you have to ask for a test.

That you can in fact be very ill with HIV and unless you request a test you may never know you have HIV? And that some may even be dying of this as on their death certificates, i.e death may be attributed to secondary infections like pneumonia or the range of cancers untreated HIV people are particularly prone to and not HIV!

We did not suspect we had HIV so we did not ask so my husband got AIDs.

If we had known and got the HIV medication early enough with modern medication you may never develop AIDs. But without HIV medication everyone with HIV develops AIDs eventually and without treatment dies. If you get treatment late and not within the first few years of infection, your life expectation will be compromised and your quality of life, as I believe my husbands has been and to a lesser extent my own!!!

I want to tell the story because I wanted to make the point to the public and hopefully to the medical profession that routine testing was not done and should be and this should be something that is put onto the public agenda and started to be considered!!!

And that many people may not know they are HIV positive until their health is badly compromised and that especially older and heterosexual people may not know what risks they are taking and some may die without knowing they have HIV - people who could have still lived a long and fairly healthy life even with HIV.

4./Cervical cancer is sexually transmitted disease that carries no stigma? Why is HIV so differently treated by both the public and the medical profession?

What is the logic of HIV being treated differently even by the medical profession with stigma and other factors meaning there is not routine testing

When other sexually transmitted illnesses such as cervical cancer have been tested for many years routinely – via a smear test at your local GP surgery?

Cervical Cancer has long been known to be mostly sexually transmitted by a virus and they have now identified the virus that causes it

It is HVP

As the main type of cervical cancer suffered in the western world is now known to be caused by HPV the virus that causes genital warts in some.

Medics are so sure about this they are rolling out a programme this year to get all young girls of 11, before they are sexually active, immunised against the HPV virus. So that this next generation of women will not have the risk of cervical cancer that previous generations did.

HIV can not be immunised against but it can be routine tested for and detected early

And as far as transmission is concerned this will prevent it being transmitted as often.

As an HIV person on HIV medication is often considered to be ‘virus undetectable’ which means there can be little of no virus in their mucous fluids and therefore they are very unlikely to be able to pass it on, even with unprotected/ unsafe sex!!

A really good reason to detect all with HIV and treat us all as soon as possible!!!

5./Women’s HIV Network in Cornwall

I started this because as a women with HIV I was not able to talk to a single woman with HIV when I was first diagnosed – KPS Kernow Positive Support is doing a wonderful job in trying to support people with HIV but they understand that women with HIV find it harder to come forward than men of all sexual orientation – many have jobs , many have children in primary and secondary school – and therefore women with HIV are the most unsupported group.

Many groups exist for men up and down the country but only one for women – Positive Women – in London
But if you live in Cornwall accessing their services except by phone and email is impossible.

Therefore KPS are trying to look for funding to start this woman and peer support network.
It is badly needed especially when you are fist diagnosed. I wanted desperately to speak to another woman with HIV when I was first diagnosed but just could not find anyone I could speak to even on the phone.

I have spoken now to a few and met a couple face to face thought trying to start this network and hope this will expand in the future.

If nothing else I hope it will be their for women when they are fist diagnosed and that we can do some education in raising awareness amongst women – especially older women - about HIV.

6./Should HIV be treated in a GU clinic?

It is not treated in GU clinics in every part of the UK, but it is in Cornwall. If you can travel to bigger towns Plymouth, Exeter, Bristol, London you may be treated elsewhere in more appropriate surroundings and with complimentary medicine and therapies and counselling offered as routine but the clinic itself.

It is not in Cornwall. KPS does offer counselling etc but not the NHS GU Clinic!!! If you can afford to go privately you may get this but not if you can not.

I personally think this is so very inappropriate. So do most people living with HIV - Why?

  • All other sexually transmitted diseases are curable or at the least not life threatening theses days.
  • HIV is life threatening and affects your whole life and your whole body
  • HIV does not affect the genitals at all in most people
  • The only similarity to other STDs is it is transmitted often sexually


  1. Most other people with other STDs will only go to a GU clinic for a week or two – if you have HIV you will be going there for the rest of your life !!
  2. The facilities offered in a GU clinic are not suitable for people with a life threatening and lifetime illness for which they will have to be on medication for the rest of their lives
  3. I, and others with HIV, could be still sitting in that GU waiting room regularly at 80 years old – this is not appropriate.
  4. And it is medication that can often have both short and long term side effects which can also be life changing or life threatening
  5. Prescribing for people with HIV and looking after people living with HIV- both HIV meds and other medications for other conditions we can get - is a very specialised branch of medicine . It should not be done in any 'general' clinic!!

In Cornwall I would like to see something like the Mermaid centre for people with HIV

I know this is may be impossible but I can have hopes and this to aim for.

Radio Cornwall

I was on Radio Cornwall on Monday

But it was so short - and I got NOT ONE response!!!!
Oh well I can only try!!!

It appeared as a small news item about the HIV women's network specifically for women with HIV in Cornwall went out on BBC Radio Cornwall today in the news section.

And then afterward on James Churchfield's programme this morning my interview was aired several times from 7 am.You can hear it all again on iplayer at:

James Churchfield (3 hr)Broadcast on Radio Cornwall Tue 27 May - 06:00 The latest news and information to start your day

You can hear my interview and an interview with a representative from 'Positively Women' in London, UK and a statement from the UK government about money for social care of those with HIV.

(not that I believe what they said!

As someone with HIV have not received so far, nor have been offered any, 'social care' counselling or anything funded by the UK government for HIV. Apart from my essential HIV medications and NHS health treatment - which DOES NOT include any element of social, personal or counselling care!! -

The charity KPS have given me counselling sessions - but government funded initiatives have not. They have provided my medical care, for which I am grateful - but then again I have paid in to our UK National Health Insurance scheme for over 35 years so I am entitled to medical care even for HIV, BUT I have had no care to cope with the shock of being HIV positive or my mental/emotional situation)

Anyway If any women who lives in Cornwall, UK and has HIV - or indeed any woman who is a partner of someone with HIV or a child with HIV and is negative themselves, wishes to discuss the possibility of this network and what I am looking at this consisting of..............

Please do get in touch with me on here, or phone KPS, Kernow Positive Support Website: hours: Monday to Friday 10am - 4.30pm Fax: 01208 77950 e-mail: Website: Helpline: Tel: 01208 264866

And ask them to give you my phone number, or leave your name for me to phone you back.

Went to the papers !!!!!!!! Why????

I went to the papers about our HIV to try to protect others, perhaps ultimately even those I love, even my daughter and her friends, from making the mistake Barry has that got us in this situation.

It may be published in the Sunday Mirror tomorrow!!!

My logic in going to the papers was not to 'tell all' just for the sake of it, or to say poor me

Nor because I feel we are any different from thousands of people who have got this thing.

I read some back issues of the Positively Women magazine sent to me and my story or one very like it was repeated so many times and that is just the tip of the iceberg!!! There are so many of us, I am not special at all!!

But I wanted to try to get HIV back on the agenda, especially with heterosexual people and especially older heterosexual people - as HIV just seems to have fallen off the world when it comes to issues that most people are concerned about in their everyday lives.

And to make the point that the sooner you know the longer and healthier your life will be.

It is still the case that if you are not treated, you will eventually get AIDs and without treatment die - nothing has changed this - here is no cure

But there is no routine testing for HIV, in the UK, that even if you go to your doctor very unwell you do not get an HIV test except if you ask - and so many would never think to ask - we did not until it was almost too late for Barry!

Yet over the last years or so we have both had tests for numerous things and me especially because of my ankle I have has a few operations and Barry has been losing weight for over a year and has been getting infections all the time.

So among other things we have been tested for:
  • diabetes, MRSA - before my operations to protect others if I was a carrier, prostrate cancer - Liver function tests, Barry as they wondered if this was why he lost weight, anaemia, cholesterol, thyroid, heart and artery disease. We have both had full blood counts, blood tests for infection, I have had a smear, a mammogram................
  • but no one ever offered us an HIV test and HIV DOES NOT show up in any of those routine tests!!!

I wrote this in a forum:

I can talk about it – indeed I want to talk about it. And I find myself talking about it. Not always or even often my actual own illness - but about the fact we have it and about HIV

but the people I tell just often know so little about HIV but because they know me that realise it may actually concern them and want to know. And I want to tell them – I want to tell them that HIV IS NOT curable as many I talk to seem to think, that the medications are not a good thing to be on - that they can give you long term side effects and even on meds you may still get a range of illnesses that HIV people can get and I want to tell them how they can avoid it – HIV - as while I always knew how to avoid it and ironically I am the one who has it, so I thought everyone else knew………….but they don't .

At least here in the UK the message about safer sex has not got out, well not to the heterosexual people I talk to both young and old. And when I say everyone, I mean nearly everyone. I am not so dedicated to raising awareness that I tell strangers in the street, acquaintances I will not see very often or the postman but I have told my daughter, my family, my friends, my community and have already been on Local Radio and maybe in a UK National Newspaper on Sunday.

I guess the reason why this is not difficult for me is I feel no shame, and feel I took no risks to get this. I do not judge anyone who may have got this through sex that may have known was risky for HIV or drug use - I do not judge at all. As to me this is simply a virus, a particularly nasty virus that can and will kill you without treatment, but the virus does not discriminate, it does not care how you got it, it just lives to survive.

But I guess the reason I can see it this way is I got HIV from my husband of over 20 years, and the only person I have had sex with for over 25 years, and I have also not had any other risks such as drug use in this time. So I come to this with no feeling of shame and find the stigma about what is just a horrible virus I do not mean anyone should feel shame – I just mean that since I found I had it I have found that many do feel shame, and this is a lot of the reason people do not tell people that may have told about another illness such as cancer etc

Indeed already in the short time I have known I have HIV I have spoken to a few people with HIV who have explained their health difficulties by saying they have another illness, cancer, emphysema, an immunity problem etc out of shame of saying that it is caused by HIV

And the reason I inform as many as I can and intend to until I run out of energy - which may not be long, as it is tiring - and have gone to the National Media……….. that if myself and my husband had HIV so long without knowing it that he developed AIDs and even when he was seriously ill his doctors still did not suspect what he had...................then this could be happening to others?

As his HIV - and mine - was only discovered and started to be treated ( I did not have AIDs as yet but my CD4 was getting low and I was not at all well) was because I ASKED for a test

It occurred to me that HIV had to be the only explanation, and although I personally knew no reason why me or my husband could have acquired this, I asked for an HIV test for both of us. And our doctor even did not want to give us that test!! Our doctor was as ignorant as anyoneHe almost refused to give us an HIV test when I asked - as he felt I was suffering 'anxiety' that I was over reacting to what the Doctor thought was my husband just having a bit of flu - I could see he was dying - and our doctor only did the HIV test to 'humour' me because I insisted!!!

The next day my husband was in hospital, on oxygen, intravenous steptrm and other antibiotics/meds etc and he almost died.

How many other, older heterosexual people especially, in the UK at least, do not even suspect they are HIV +?

I feel I have to speak out But even if I only spoke out to my friends, family and community I would hope by doing that it will save someone from this nasty virus!! Even if only my 19 years old daughter and her friends - who do not consider HIV AT ALL!! take note, and use safer sex, I may at least protect them! The ignorance I have found about HIV is shocking.

I only spoke to a 24 years old daughter of a friend just yesterday- her mum wanted me to tell her and she was interested or I would not have spoken to her - who thought that HIV was not a problem anymore!!! as if you got it, it was curable so there was no need for condoms etc as if you get it you just go to your doctor, gets some meds and you are cured!!!!!! and she is with a man in the british forces -

-my husband is a seaman and apparently merchant seamen and those men in the forces are high risk groups! I have spoken to young men and men my age who have NEVER used a condom in their lives!! And women who try but the men do not see wy they should use a condom - and this is in the UK!!!!!

Because HIV is only gay men and 'poor' people in Africa they think and again a lot of them thought that HIV was now curable with the right drugs that we can get in the UK

...............I have spoken to many older people like myself who are now again having new relationships because their long term partner has died or they are divorced .....and few of them knew that HIV, or STDs was something that should worry about, as HIV was not around when they were young and STDs were not something to worry about as you just went to a clinic, if they worried at all.v

I do not expect everyone - or even anyone - to react like me and tell everyone at all!

While it has not been at all hard for me to do this and I have had few, if any adverse reactions, I do understand how hard it can be to disclose. I now know someone with HIV who has only just started to talk to anyone after 4 years, another who has not yet told her grown up children after 7 years, another who has younger children who still do not know............................I do understand and respect we all have to handle this differently

But this is my way - If just one person does not acquire HIV because they remember me and what I have said and use a condom or one person gets diagnosed before they have AIDs like my husband - I will think it was worth it. It is for me the ONLY way I can deal with this thing right now!!

But there is another aspect I have lost several friends to other illness, cancer, heart problems, strokes even though I am only 55. And I have always shared my health or lack of it with my friends and family - if I just had a cold they would know about it and anything more serious, even if it was not life threatening , which I have had, I would tell them and expect them to visit me in hospital etc and visa versa.

Had they not told me they were ill, even those who have died, I would have felt it a betrayal of our level of friendship or relationship if a family member. I wanted the chance to support them and to try to make their last months or weeks better with the support of friends or family.....and

I feel the same the other way around - that I would always tell my friends and family and even my community as I have lived in the community for over 20 years - if I had an illness that could affect my life or ultimately had the possibility of killing me, I will tell them . I refuse to treat HIV any differently!

  • If I did then for me the stigma about HIV has won, I refuse to be stigmatised or go along with that stigma.
  • HIV is just a nasty virus, it has no thoughts on the matter, only people do.

Friday, 16 May 2008

Liver holding its own - thank god!!!

The good news from the clinic is my liver seems to be holding its own with the HIV drugs! Well actually my liver it seems no longer has a problem !

My liver function blood tests were back to normal and the figure they were worried about better than normal!!!!
And my scan showed no sign of an abnormal liver - no cirrhosis etc

This is probably been helped by my cutting out my lovely red wine to a considerable extent since I have been on the HIV meds. As my liver was probably temporarily under stress when they took the tests due to the fat I was drinking an awful lot to cope with finding out both me and Barry were HIV and him being in hospital at deaths door!!!

As the only on going difficulty with the HIV meds is that they actually make me feel sort of drunk!!

About half hour after taking them I feel drunk but without the good bits, and then you can not really interact sensibly, and then mostly I conk out!!

This does not happen to everyone but have heard from several others that it does on this particular combination of HIV meds -

Both Barry and I are on the Sustiva/Truvada combination

and it affects both Barry and I like this ........

....................and we take them at around 9 am as we have found that if we take them later we feel a sort of 'hungover' by the time we wake in the morning, and the absolute latest we can take them to avoid this is about 9.15 as we seem to need to completely 'sleep off' the drunk feeling effects to avoid feeling sleepy/disconnected /hangover all day.

  • The positive side is my consumption of alcohol has gone right down to practically nothing
  • This is because I am no longer drinking to cope with stress and I used to do most of my drinking in the evenings and of course by the time I have done everything, cooked the tea and sat down there is not much time to drink, if any, before I have to take my tablets. And they make me feel drunk anyway although not in a good way and alcohol makes it worse - so I rarely now have more than a glass on a regular basis!!!

Yet even though I told the clinic this yesterday and my latest liver tests were not only fine but actually very good - they still managed to make me feel guilty for drinking at all.

Why should I not have the pleasure of a glass of wine with my meal etc or a couple when out at the local?

Why does the bloody GU/HIV clinic manage to make you feel a complete failure, even when you have made huge efforts - just because you do what thousands of people do every day. I do not see why having HIV means I should have less pleasures than most other people available to me?

I tried to say this to the registrar I saw and she had the cheek to say - that perhaps I should look at why I needed alcohol to feel OK . This was not my point and NOT what I was saying, she just was not listening to me really at all and this makes me so absolutely MAD!!!!!

As this was not what I was saying - I do NOT need my wine to make me feel OK.

Yes I was for a while using wine for self medication due to feeling so crap due to untreated HIV - that I did not know I had !!!!!!- and plus the pain from my horse riding accident and the emotional pain of having a husband working away which never suited me at all.

I was fully aware I was doing this but now I am not as all my needs to self medicate have gone!!!!!!

It is their job to give me the medical facts and let me make the choices - not to make assumptions and not to judge!!!

In fact now I am being treated for my HIV I feel a lot better physically and mentally and I have never been depressed and am not depressed. All I am saying is I still enjoy my wine!!!! - yes I accept that over the last 3 years I have drunk too much and the HIV is a wake up call - but I am not using it as my only way of feeling OK !! never have really.

  • God that clinic makes me so mad - I can not believe she and the others do not have a drink !!!!! Yesterday made me totally furious!!!!!!

    What do they want - blood - yes they do want blood and lots of it but they also seem to want emotional and self esteem blood too !!!!

That somehow if you have HIV you are not even allowed the pleasure of a glass of nice wine

I fucking hate that clinic !!!! I can do without their judgmental crap!!! It is up to me what I drink and I am doing pretty well thank you!!

Even my liver is saying so!!

The Clinic Yesterday - another rant

Went to my HIV clinic appointment yesterday .

  • I always end up so totally wound up - every time I go there!!
  • And I accept am oversensitive and part of it is me as I am less able to take this than others maybe? - Barry feels the same but does not care as long as he gets the drugs - but I do care, very much!!!
  • but they have some responsibility too -the 'attitude culture' towards those with HIV stinks at that clinic - this is my honest opinion!!

  • And I know I am right but I am powerless to do anything about it - except ship out and go privately or to another HIV clinic, both of which would involve travelling and I find travelling difficult

Barry and I went together but saw different doctors . This time because Barry was seeing our usual consultant I saw a younger registrar.

I had real hopes that seeing her would be marginally better as my hope was that she would not as yet be hardened and seeped in the judgmental 'culture ' of that GU/HIV clinic - it was slightly better, not but not by much??

  • Is is me ? or is it them?I guess it is always both
  • but I take responsibility for my part in it - the difference is they at the clinic think their attitude is fine!! That there is nothing about their interaction with me - or anyone else I guess - that is destructive and abusive and nothing they need change!!!!

  • They are sooooo wrong!!

I just do not feel that I am 'respected' spoken too with the same degree of respect and acceptance as I have when having medical treatment for other health problems

- for instance - only a couple of weeks ago the respect I received from the dermatologist that I saw about my skin problems caused by HIV was wonderful. And just last week a saw an Ophthalmologist who treated me with the sort of mutual respect I expect from a consultant.

I also had that level of respect and non judgmental approach/attitude from my consultants re my horse riding accident a few years ago i.e Mr Norton and Mr Parsons and my consultants when I had a gangrenous appendix some years ago................

I do not feel that this feeling of being patronised/judged at the HIV/GU clinic is my imagination at all as I have other experiences with consultants to compare it with

And one thing is for sure - they do not realize they are doing it and it is part of the 'culture' of that clinic!! If you challenge them on this - it is immediately thrown back in your face - as your problem - they certainly do not take it on board as something they may need to look at as a service!!!!!!!!!!!!!!!!!!

It was made startlingly obvious that there is a culture of judgmental attitude at that clinic towards 'clients/service users' when yesterday - because the person who usually takes the HIV bloods was on holiday - I got a new nurse to do my bloods who has just moved over to GU, who before this was a midwife - only last week she was working in the maternity ward, this week she is in the GU taking HIV bloods

and she was just so refreshingly not judgmental -

.......unlike every other nurse and doctor I have seen at the Truro GU/HIV Clinic.
  • I am guessing because she has not been there long enough to have been indoctrinated into the judgmental attitude that exists in the clinic!! !!???

I told her our story -mine and Barry's i.e how we got HIV - don't ask me why I tell it to new medics and nurses? I think to see if they give me a judgemental reaction or not ...............

And she did not at all..........she was sympathetic, non judgmental, believed what I said and could see why to get HIV given my lifestyle was a such a shock and the extent of what that shock was!!!

( whenever I tell the older 'hardened' nurses/doctors at that clinic the fact that for me is very important i.e that I personally have never taken any risks that potentially in the usual run of things lead to HIV, and so it was probably more than a shock than it might have been had I taken any such risk - they just respond with what I can only describe as 'silent disbelief and dismissal'.

It seems they do not believe anyone who says they got HIV truly 'by accident' and without doing any 'risk taking activity whatsoever? I am not asking for 'special 'treatment for this, jsut that it is acknowledge what a shock and how unexpected HIV is for me.

And also that I have ALWAYS been a sexually very responsible person, especialy since I sorted myself out in my 20s re my sexual health and never taken any risks for me or anyone else. Also as a youth worker for many years with a remit/specialization in sexual health/ relationship health I have knowledge to back this up..........................

and I want that acknowledges.

Maybe I am reading them wrong and their reaction is due to the idea that 'their are no innocent victims of HIV??

  • Well I do not believe there are any 'guilty' victims of HIV but my perspective is different as I think we are all innocent - it is a virus, the virus makes no value judgements - only people do!!!
  • I am not trying to say I am any different from any one else with HIV - I feel we are all innocent as this virus does not respect anyone it just finds a way in if it can and it is a virus

Only we humans put stigma on what is a completely thoughtless entity with no purpose but to survive......

But what I do want from those who treat me is some recognition/understanding/empathy of my own unique situation and the pain/hurt it is causing me - and that everyone else gets responded to as a unique person

I am not saying my situation is unique or deserves any special or different treatment from anyone else with HIV............

What I am saying is from my medics - nurses and consultant, doctors - I want recognition for mine and every one's unique situation and story of how we got HIV, and understanding of the pain, hurt we are going though and no judgment of any kind

And at the Truro GU/HIV Clinic I do not feel I am getting this AT ALL!!!!!!!!

When I go to the GU/HIV Clinic I feel that by just getting this disease - even if it was through sex with my husband of 21 years - I have advocated - in their eyes at least - any rights to be considered to be a competent person in ensuring my sexual health and in all other aspects of my life,
i.e a person who looks after myself and capable of making my own decision as to my treatment and how I live my life - of course when it concerns medical stuff based on their expert medical input .

But this for me never happens at that clinic - yet again I found myself feeling I was being preached at, this time by a young registrar half my age and experience!!

I just do not seem to get the acceptance at this HIV/GU Clinic, that I am a fully functioning person despite my illness and am competent to make my own decisions re my lifestyle, treatment and illness and do not need them to judge or offer 'advice' from the perspective of judging me and knowing best - they know about the medical side due to their training but they are not me and they do not know my body as I do or my mind.

Obviously I bow to their greater medical knowledge - and it is fine for them to make 'suggestions' based on that greater medical knowledge, their role of my doctor/consultant for HIV and what they know of me ..........

But I do not feel this is what happens at that clinic - I do try to go their with an open mind, make a fresh start every time and hope that I do not feel judged or patronised..........

But the minute I do, my hackles are up!!

This was a new and junior/younger doctor as she is a registrar so I was hoping for a different approach - less set in the judgmental .

To be fair she was slightly better - but no by much

They just do not even realise they are doing it is what really p****s me off.

That to see people with HIV in this way is just so ingrained in the 'culture ' of that clinic is what is the problem for me - so much ingrained that do not realise they are judging or judgmental and they will see me suggesting/knowing that they are as my own problem....

Well I hope someone form that clinic reads this and that they will at least accept...........

Thant even if they feel it is my problem

  • I am the patent - and they are getting it totally wrong with me!
  • every time I come back form that clinic I feel totally crushed and abused - yes abused - fro at least the next few days
  • usually in tears for the next 24 hours every single time I go there!!
  • That even if this is 'my problem' to give me the best treatment don't they have an investment in rectifying this ?
  • Can they not try to understand what they do that leads to my feeling like this?
  • Thant even if it is - all in my head - and I know it is not, that they have some responsibility to sort it out so it does not happen

  • As they all individually will move on - but for me HIV treatment and attending such clinics are for the rest of my life


Tuesday, 13 May 2008

HIV Medication Update

I thought I would update all of those who were kind enough to support me on this - and thank you all

I am now about 3 weeks into taking HIV meds; and so far so very good!!

The update on my HIV medication is as far a short term side effects I am fine:

I had some initial nausea and diarrhea in the first week one night of vivid dreams and a day of feeling 'manic' and at first I felt 'drunk' or 'knocked out' after I took my tablets every evening and had no alternative but to go to bed, then hungover in the morning.

However the gastric disturbances have practically gone i.e no nausea I do have 'loose motions' ( sorry for the details ) but not too bad I can not cope with this,

And while I do still feel slightly 'drunk' after taking my tablets in the evening -

Which does unfortunately mean that after about 9.30 any chance of my sensibly writing in here the HIV Woman to women forum I started: or on the PNI ORG UK forum: is often impossible as I just can not get it together'.

So I apologise that those on theses forum will hear from me less for a while at least. As I used to do a few posts in the morning but the majority after my evening meal and after my family went to bed so it was quiet. But now I just crash out after I take my tablets so just do not post very much at present on the Internet at all.

But it is OK for me as it is not an unpleasant feeling and it saves on alcohol!!!!

I am told that this will improve - Just like the 'hangover' in the morning has.
The major hangover in the morning has gone

But what am thankful for is that so far I have not had any of the mental health side effects that this combination - Sustiva/Truvada may bring for some i.e depression, nightmares, psychosis etc

This was my biggest fear !!!!

  • ( I was just so worried - mainly because my consultant kept going on about the possibility so even though I have never suffered from any of the above and doubted I would - but as I had a brush with phobic anxiety at 17 and PNI ( Post Natal Illness) at 39 after my baby was born my consultant seemed to think I was a candidate for this combination causing me to have mental health side effects
  • I never thought she was right however ..................but who am I do argue with the 'experts' well I am the 'expert' on me!! and although I am getting used to my consultants 'ways' now I still think she does not often listen to me or give me any credibility for knowing myself and my mental and physical health!!
  • But I did not myself believe these HIV meds would cause me any mental ill health as I believe/know that both of theses mental health 'illnesses' were brought on by outside circumstances plus learned behavior and NOT any innate tenancy to mental ill health on my part.
  • That for me they were hormonal and 'learned' reactions to a 'real' cause and also I have NEVER suffered from depression ( a tendency to depression is a big problem with Sustiva/Truvada!! )
  • But due to my consultants fears I got scared unnecessarily that theses drugs would lead to this - thankfully so far they have not at all!! Maybe a speak too soon , but I know myself and I think I wil be fine in terms of drug induced mental illness - I know it just will not happen!!!)

But anyway, whatever the cause of my brushes with mental health issues - in fact I have been fine on theses HIV medications. If anything I feel much better both physically and 'lighter' and more healthy mentally!!

Partly I think because I know that now my HIV is being treated - so I no longer feel in 'limbo' waiting to get ill like my husband did !!

And I now have a chance of living out my 'normal' lifespan and still will be able to do all the things I planned to do in life ( I am 55 years old and have lots of plans yet)

But also I feel that the HIV meds are making me feel more physically well and have more energy, so this helps my mood too. I do not know if this is just psychological but I certainly feel just so much better!!

I have had energy for the first time in years, I feel happy most of the time because I feel physically more well and I hate feeling physically unwell

( ironic really that I have HIV but feel more fit and well physically than I have done in years. But I suppose this is because I have had untreated HIV for years and just did not know it?)

Anyway to anyone who reads this - I may got other side effects in the future i.e lipo etc but so far for me the medication has been nothing but positive