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: http://www.bbc.co.uk/radio/aod/mainframe.shtml?http://www.bbc.co.uk/radio/aod/cornwall.shtml

James Churchfield (3 hr)Broadcast on Radio Cornwall Tue 27 May - 06:00 The latest news and information to start your day
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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: http://www.kernowps.co.uk/Office hours: Monday to Friday 10am - 4.30pm Fax: 01208 77950 e-mail: office@kpsdirect.com Website: http://www.kpsdirect.com/ 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:
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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……….. ........................is 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.

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

RANT OVER!!!!

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: http://hivwomenwest.proboards56.com or on the PNI ORG UK forum: http://veritee.proboards7.com 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

YES!! Hypochondria reigns

Yes I am a Hypochondriac.

Having read though my last post it is obvious that I am!!

But if this is how I am going to have to cope with HIV and taking meds - I do not really care - it is up to me!!

• Barry actually had the same range of symptoms during his first few weeks of HIV medication therapy - but he just did not bother to mention it!!And I guess that most who are not Hypochondriacs, would like Barry, just get on with it ? But it does not look like this will be how I will be
  
  
• I know he did feel the same as every now and then I would catch him looking uncomfortable, or flushed or notice that he was sweating and ask, and he woudl tell me pretty much the range of things I am experiencing i.e sometimes he would feel sick, sometimes hot, sometimes cold, weak or dizzy, but I have to ask otherwise he would just plod on and not mention it!
  If he was feeling particularly bad or tired he would just say he was going to lie down - but as he has been tired since HIV I never knew if he was feeling ill or just needed a rest..

Oh Well

• My family are just going to have to put up with it !
  I did not ask to have HIV and have to take theses meds
  ...........and Barry did not have to have sex with a pretty and young Brazilian woman to get it and to give it to me!
  
  
• I have forgiven him, but he will just have to deal with the consequences of it for me.

As for Caja I have cared for through her every illness for just short of 19 years - so now its my turn.
While I do not expect her to actually care for me when I am ill or show any concern -as she never has up to know and I doubt HIV will change this overnight.

But I am not going to feel guilty when she is ill and wants my sympathy/attention/advice/help if I am feeling too ill to offer it like yesterday.
Of course if it is an emergency I will see to her and do my best - but otherwise she is old enough to look after herself sometimes when she is ill.

Am I a Hypochondriac?

Am I a Side Effect Hypochondriac!

I do hope that due to HIV and having to take theses meds I am not going to turn into a side effect and HIV symptom hypochondriac!

As many seem to, judging by postings on forums, and the signs are there that I will too!

There are of course some who feel I am a hypochondriac anyway :-(
But I am not. I do not think so as I have never in my life imagined I have a symptom that I do not nor over exaggerated one or had psychosomatic symptoms

( although as a kid with a food intolerance I was constantly being accused by parents, teachers, doctors that my symptoms I suffered constantly from eating food I was intolerant of were psychosomatic, but they were not - unfortunately they were very real and if they had taken me seriously I may have found out years before what food made me ill, and spent less of my life suffering!)

However I do HATE being ill, and will mention it if I feel unwell, and far too often. Hence why I have in the past been thought to be a hypochondriac.

Well yesterday I suffered what I can only imagine were side effects but in a very strange way - if they were not side effects, god knows why I felt like I did?


Yesterday in the space of a day I feel like I ran the whole gauntlet of an infection or virus - in less than 15 hours

• I woke up feeling sick with hot and cold flushes later I started sweating with the hot flushes. My glands came up and I felt feverish, then I started to have a really mussy head, a bit like my head used to feel before a migraine, but I did not get a migraine. I started to feel dizzy on and off by the early afternoon, but tried to fight it and do a few things. Unfortunately one of those things was to gloss paint some garden patio items - and the gloss paint of course made my dizziness and nausea worse!!
  
  
• I then got a sore throat, but then it miraculously went again!!Off on on throughout the day I felt alternatively sick and hungry, but if I tried to eat I felt sick again. In the afternoon I felt overwhelmingly tired and had to lie down, but could not sleep. I got up and then had a splitting headache and a mild sore throat again. I then gave up and resorted to a bottle of red wine!!!!
  
  
• I know I should not drink, but it worked for me. I did not drink the whole bottle, about 2/4 and actually my headache went I stopped feeling so sick and went to bed just with hot and cold flushes and a slight sore throat!!the wine was not all I drank yesterday.
  As unfortunately and peculiarly - as most find alcohol make them feel sick not stop nausea - I find alcohol always makes me feel better ( probably means I am an alcoholic!!) and a sip of gin deals with nausea for me as well or better than any medicine including anti emetics. So I did have a few sips of gin in the day, but really only sips, probably did not drink more than the equivalent of one double gin -but it was still yet more alcohol.
  
  How am I going to give it up altogether when it helps me feel better so easily? Why would I want to continue to feel nauseous when I know a sip of gin may put it right for a while?
  
  
• By this time I was sure I must be coming down with Caja's cold or virus. As poor Caja sufferers colds and bugs all the time - must be her age as their is nothing wrong with her immune system - but even with HIV neither Barry or I usually get them from her.
  
  After sleeping briefly I woke up again at about 12.30 am with a really terrible sore throat, so thought 'this is why I have been feeling so odd? I am going down with Caja's cold' But then I woke up again about 2am, feeling perfectly well with no symptoms at all and went peacefully to sleep until about 6.30 am!!!!
  
  
• But consequently, because all day my symptoms were changing so often and so rapidly, I spent the day saying things like, now I feel sick, now I feel dizzy, now I have a sore throat, now I have a headache, now I am hot, now I am cold, now my head is muzzy, now I feel sick again...............................

But my family - neither Caja nor Barry took a blind bit of notice of me!!!
All I can assume is that while I do not think I am a hypochondriac I am more of one than I thought, or I mention how I feel more than I should, even before HIV and they are used to me giving a running commentary or rapidly changing symptoms throughout a day!!

But even so, yesterday theses symptoms were so rapidly cycling and coming and different things coming and going in such quick succession, I just could not help mentioning them when I had yet another symptom yet the previous one had gone - it was all very strange!!

There was an added difficulty with Caja as the poor girl was relay unwell herself, with a very sore throat, cold and generally a virus. And she wanted my attention in the morning and wanted me to get her something for it. And while actually I can not do anything more for her than she can do herself - I suggested honey and lemon but I think she wanted me to make it for her -

But in the past I have always been very attentive when she is ill - but yesterday when she wanted me to care fro her, I jsut felt so horrible ( pukey, dizzy , just horrible) so I did not give it to her and Caja thought I was being grumpy and rejecting her, even though I explained I was feeling very unwell too!!! This made me feel so guilty on top of feeling ill!!!

Anyway as no one took any notice me at all - no one even seems to register I had even sen when I reported yet another symptom - so much for Barry keeping and eye on me!! This made me feel that if anyone is going to take any notice of me at all in the future when I feel unwell, I had better refrain form mentioning all but the most severe of symptoms.

God I hope today is better

So far does not seem to be looking good.
Woke up feeling fine at 6.30, made a cup of tea and took it back to bed, drunk it and then went hot then went dizzy, then I felt suddenly sick and had a reaching attack but thankfully was not sick ( I HATE being sick) I feel sort of weak, but no sore throat, but do not feel 'right' at all.

So looks like I - and my family - are in for another day of side effect hypochondria!!!!

A Silver Lining - Meeting others

I feel a lot better after meeting other HIV women:

A lovely HIV Poz woman came for dinner last night, she lives in another county and not in Cornwall but was down this way so came to meet me - she is only the second woman with HIV I have ever met - I met the other one last Saturday and they are both lovely women .

Surprisingly both that I have met are over 50!! One woman I met is in her early 50s, and the person I met last Saturday is a little bit older than me, but not much!

Meeting both of them, has helped me loads and I hope to meet far more HIV Positive women as I go along in the future.

I now know I have done the right thing in trying to start this network - as both women had HIV awareness issues that they want help with to campaign for, that a network in the South West of England may help with - as we may as a group be heard at least a little?

One big one is travel i.e if you have HIV you are banned from visiting and living in certain countries i.e a biggy for me and another is Australia as we want to visit it in the future but can not because we are all HIV positive and they just will not let you in.

We want to go because all Barry's living relatives, including his brothers live in Aus and they are not getting any younger and Barry wanted to see them again before it is too late.

The other woman I have spoken to have similar reasons i.e relatives/friends that really need to visit in Aus, but due to HIV are banned from going there - if they are on medication and therefore have to say that they have HIV it seems - but if you are not on medication you can just go and not mention it??? - in this day and age to ban someone from visiting their relatives in a country due to HIV I think is truly out of order !! I mean as women over 50 who and how are we going to infect anyone with HIV in Australia? Its daft!!!!!

So we can campaign to change this together and get together on other issues

• I can not really post anything more specific about either women as they need to choose who they tell about their HIV and one is a lot more 'out' than the other. But for neither can I post anything about their personal situation that may give any clues as to who they are.

However I have to say that both are very brave and strong women, and both have faced far more due to HIV than I have ( at least so far) and also all the other women I have spoken to who have HIV - online and on the phone - have had to face far more than me.

A few women I have spoken to online and in person who are living with HIV have awful stories to tell of losing their loved ones to HIV or related things, discrimination or even real abuse by partners or those they disclosed to, illnesses, hardship and bad living situations or homelessness, financial difficulties etc.

One said to me on the phone 'what more can happen' and while I have felt like this, she certainly had more reason than me to feel that she does no have any luck in life and little of the bad luck/circumstances she has had to endure is she directly ( or even indirectly ) responsible for.

So I feel I am indeed very lucky, that I still have my husband and I still love him and despite HIV we get on, and that he is now home living full time with me , something which I really love and appreciate.

I still have my daughter and she loves me however she may behave towards me I know this. I still have a lovely home and will never be homeless, I will have enough to eat and enough money to get by whatever else happens and my wider family and my friends are all sticking by us and everyone has been great - I am truly very privileged it seems to be an HIV woman with all this!

Without giving away any personal information, the woman who came to dinner the other night is lovely and we all got on with her well as was the lovely woman I met on Saturday - and I am meeting the one I met on Saturday again tomorrow.

As one of them said we would not have met if it was not for HIV and she has met lots of great people through it. There are silver linings ( positives) in everything and this is one of them.

And it helped me to see that both are well and one is working full time in a very pressured job, has older children some of whom are still at home and is the breadwinner and doing really OK!! The other still works part time now and then and does Art

This helps me to see that once I have got over the early side effects of the HIV meds this could be me and there is a good life out there even if you have HIV.

The woman I met at the weekend has been ill in the past , but not through HIV but because where she lived she could not get the modern drugs, so the HIV meds made her very ill. But she is fine now she is on the latest antiretrovirals...........

In fact both women looked healthier, attractive, younger than many over 50s I know here in my Cornish community or me.

Sorry that his is a real value judgment, but it seems true as both looked much younger than their years, Caja said of both that she thought they looked much younger than me!!

..................................Caja thought in their early 40s or less - and one is older than I am !! Neither are overweight - yet I am - and so are most of the women over 50s I know here - and both looked very healthy and fit and both said they felt very healthy. In fact one said that she has never been healthier!!

For a start every single health aspect of yourself is checked out and dealt with when you have HIV. At a level it never would be if you did not. For instance one woman before HIV had psoriasis, as I do too. And she has had this dealt with due to being HIV positive .

And funny enough I have this too and it has been very irritating for years. But since I have had HIV I have been referred to a dermatologist been given treatment and now for the first time in years I do not have psoriasis at all. And all my other niggling health problems are gradually being looked into and being ironed out - without HIV this would not have happened.

One of those I met even felt that the HIV antiretrovirals even helped her to shake of colds and other bugs easier. I can't comment on this as this seems a bit too much to hope for.

However it could be that with a good t cell count due to the meds she is now well and able to shake off viruses better, when before her T cells were right down and she was feeling run down tired, and getting every little bug.

Well if this is so I am looking forward to my HIV meds kicking in fully as for a long time - up to 5 years - I have felt just so very under par, no energy, tired, getting every little bug etc - cant wait to feel like theses two women

i.e have energy again, feel better, be less tired and look younger - god I hope this works like this for me too!!

I so hope that I feel the same as these two lovely woman on the meds as it has really given me a boost to meet them and know how positive they both are and how well physically they are doing and how proactive and positive their attitude to life is.

Stigma, HIV and cervical cancer

I have said this to a few people today in person and in email - so I thought I may as well write this here!

As for me it just proves how 'random' and unjustified the stigma against HIV is - and confirms to me how much this stigma about HIV HAS to stop
_____________________________________________

It really puzzles me that another, most often sexually transmitted disease - cervical cancer - i.e the more common type of cervical cancer - is not stigmatized while HIV and AIDs is??

Yet Cervical cancer is almost exclusively acquired by catching the virus HPV through sex with men !!!!!!

Yet HPV is not stigmatized like HIV in the same way at all!!.

Just as catching the HIV virus can lead to AIDs if not caught early and treated early, so can HPV lead to cervical cancer and this can often be fatal too -especially if not caught early!!

If you do not acquire HPV- which is exclusively acquired through sex with a male partner - you simply do not ever develop the most common type of cervical cancer ( the other is rare) . And exactly like HIV the chances of getting HPV is higher if you:

have sex at an early age,
have many sexual partners
have a partner who has had many sex partners
have sex with uncircumcised males
( Assumes your sexual partners are men as sex with women carries little if no risk of HPV)

http://www.cancer.org/docroot/CRI/content/CRI_2_4_2X_Can_cervical_cancer_be_prevented_8.asp?rnav=cri

If you are a woman this is exactly the same for HIV too!!
Yet no one stigmatizes a woman with cervical cancer!!

In fact far from it !!

They have been giving women cervical smears for years just in their own doctors surgery for cancerous changes caused by the HPV virus and they have now rolled out a program of immunization in Britain against the HPV virus for girls between 12 - 13 before they are sexually active - in recognition that they only get HPV from sexual activity!! And to try to stop women getting it at all
http://nds.coi.gov.uk/environment/fullDetail.asp?ReleaseID=325799&NewsAreaID=2

( I understand you can not immunize against HIV, but you could test routinely so that all people with HIV got treatment early as possible - as early treatment vastly increases your chances of a 'normal' lifespan)

To me it does not make any sense!!I want to make HIV as little stigmatized as cervical cancer!! And improve the recognition and treatment

Ironically I do not have HPV!! I have HIV but not HPV- So I will never get the common cervical cancer!!! But yes as I did get HIV, I could get AIDs

But if I had cervical cancer I would know that I would get nothing but sympathy from everyone and would not fear telling anyone that I have cervical cancer

( or even a bad smear test result, and a bad smear test result means that I have caught HPV though my sexual activity, but there is no stigma in this!!)

Yet if I get AIDs, I can not be so certain that I will not face stigma and prejudice!!!!

Yet the two are 'acquired' in EXACTLY the same way - there are far more with HPV than with HIV and actually cervical cancer, even in its late stages is a lot more 'curable ' than AIDs

Just a thought!!!!!

I am sure this has occurred to others - but it only occurred to me the last couple of days as ironically I found the results of my last cervical smear - which was of course clear as it always has been all my life!

As I have simply been lucky enough not to have been exposed to the HPV virus. It could of happened just as it has happened to many women, but it did not happen to me !!

But HIV did happen to me, I was simply not 'lucky' with HIV !!

I ASK AGAIN - WHAT IS THE DIFFERENCE IN TERMS OF SOCIAL STIGMA BETWEEN THE VIRUSES HPV & HIV - IS IT JUST SOCIETYS' ATTITUDE ???

So Far So Good - but its early yet!

SIDE EFFECTS

So far the only effects I have noticed are :

Vivid dreams - to the point, but not quite, of disturbing.

Agitation - Not too bad - yet - nothing that I can not deal with so far. At one point I thought I may have a panic attack, did not and am now fine, just a bit 'on edge'.

Heightened Sense of Smell! - This is the one side effect I can definitely say is real yet this is the one not in any of the information leaflets about any of the HIV meds I am taking. But this one definitely exists. I can smell an armpit at 30 paces!! can even smell that the dog is coming into the room before he does - very odd!!

Not sure if any of this is just being caused by my anxiety of taking the HIV medication or are 'real' side effects? When taking medication that is a toxic and powerful as HIIV meds have to be - you do have to have some reaction I guess

I did have odd vivid dreams all last night. However I am someone that this happens to sometimes anyway. So I thought it can not be the drugs as yet? But I must admit they were very strange dreams and not as my vivid dreams usually are as they woke me up and every time I went back to sleep they happened again.

Unfortunately I had watched the wrong thing before I went to bed as I had watched a programme called 'extraordinary people' about a young man who due to a lowered immune system - not HIV but a genetic problem with his Tcells - has such a colony of warts get hold of his hands and feet that the growths look like trees branches .....totally ..............horrible .....poor man!!

As you can see from the picture it was enough to give anyone nightmares and not what I should have been watching ................. not the thing to watch just before you go to sleep when you have a lowered immune system due to HIV and are taking medication that is known to give quite a lot of people vivid and often disturbing dreams!!!!!! I do not know why I did watch it, as this is not something I would normally have as evening TV viewing!!

I dreamt that I too had theses warts due to my lowered immune system and became a circus act like this unfortunate young man...................

On one of the HIV Poz boards I remember reading a discussion about this, where it recommends that you can set yourself up for 'good vivid dreams' rather than disturbing ones by what you read or watch before bed! This person suggested Porn!!

Not sure this would work for me as I do often find Porn disturbing!!

But I get the idea and will not in future watch anything disturbing before bed that may get incorporated into a dream!

I am also what can only be described as 'agitated' but apart from the worry first thing - but not the reality - that I would have a panic attack due to it it is not really any real problem so far.
I am not sure that my 'agitation' is a side effect or it has been caused by being anxious about having taken theses drugs and watchful for any side effects.

But it is not as yet a real problem, as long as it does not get worse this is OK. In fact it is giving me some energy to get on with things and I have a web site I am long overdue with and hope to do this today. I have in the past used slight agitation/anxiety to get things done.

Heightened sense of Smell - this one is very real !! And it HAS to be the drugs as I have NEVER had this before ever. I can smell everything in a rich tapestry of smells, I can smell animals and people before they come into the room!! As I pass objects or things in the kitchen I can smell every smell as distinct and definable.

Yet this is not mentioned in any of the drug literature?? But both the meds I am on are quite new and the full side effects are still being noted.

Its not really a problem. And I guess the explanation is that at least two of the drugs I am on are known to affect the Central Nervous System - so my heightened sense of smell is part of this I am sure.

I am grateful therefore that it affecting my CNS has only so far manifested itself in this odd sense of smell - as symptoms like nausea, vomiting, dizziness are all also CNS symptoms and I do not want those as i just can not cope with nausea or vomiting .

So a heightened sense of smell is fine by me and maybe it will spur me on to keeping my house cleaner and more smell free!!!