Friday, 25 April 2008

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!!!!

Thursday, 24 April 2008

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.

Tuesday, 22 April 2008

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)

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

( 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 !!


Monday, 21 April 2008

So Far So Good - but its early yet!


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!!!

My HIV Medication


This will probably turn into a very boring blow by blow account of my first day on the HIV medication - sorry to anyone who reads it for the sheer boredom, but it helps me to write it!!

But this is how I am - I hate taking any medication and will be hyper-sensitive to any effects. So I do not know if how I am feeling is just imagination brought on by fear or real through the drugs.

I am on the following medication:

( both are like huge horse pills - but better than some HIV patients who are on much more i.e some one 4 or 5 drugs twice a day - the picture above is what one poor HIV blogger is on twice a day!!!!!!. But as I have never taken meds before I can start on the newer ones as I am not resistant and they are only taken once a day)

Sustiva - which contains the active ingredient efavirnz : Which apparently penetrates very easily into the brain and causes in many people Central Nervous System symptoms:
And given that I am prone to anxiety this is the side effect I am most worried about - and it seems my consultant is most worried about. The list here is really quite extensive and for me worrying.

(CNS) symptoms (dizziness, headache, somnolence or hypnotic trance). Psychiatric symptoms (confusion, insomnia, hallucinations, vivid dreams or nightmares, depression, euphoria or mania, agitation) are less frequent. Some people in recovery from substance use will experience flashbacks. Other side effects include rash, nausea, vomiting, diarrhea, fever, insomnia and increased liver enzymes.

Truvada - This is a combination of two anti HIV virus drugs - emtricitabine and tenofovir

This is not so worrying on the CNS side, but of course it does list the most common short term side effects as being 'dizziness, diarrhea, nausea, vomiting, headache, rash and gas.'

And of course I suffer from emetophobia, a fear/phobia of feeling or being sick ( in fact this is really my only real phobia and the only thing that really induces anxiety in me ) So it is important if I am to keep theses drugs that nausea and vomiting are not a huge side effect for me.

Luckily they have understood this and I have been given some very powerful anti emetics/nauseant called Domperidone,
Which I am told is better than Maxilon I have taken in the past for drug side effects. Lets hope it works!! It also has the effect of increasing breast milk, or giving you breast milk if you do not have any ...........................I will let you know if I can become a wet nurse !!!

But the Domperidone itself is not without its own side effects and I took it last week without the HIV meds to see if I got any side effects , and yes I did !!! it gives me a horrible taste in my mouth and brief stomach cramps

It is also worrying for someone like me who hates taking meds and who has also had my consultant worrying about my liver to find that Truvada can occasionally lead to two potentially fatal conditions:

1.'Truvada can cause severe or fatal liver problems. Symptoms include nausea, stomach pain, low fever, loss of appetite, dark urine clay-colored stools, jaundice (yellowing of the skin or eyes). Call your doctor at once if you have any of these symptoms'

2.'lactic acidosis (the build-up of lactic acid in the body). Lactic acidosis symptoms can start slowly and gradually get worse. Symptoms include unusual muscle pain and weakness, trouble breathing, fast or uneven heartbeat, nausea, vomiting, stomach pain, and numbness or cold feeling in your arms or legs. Contact your doctor at once if you have any of these symptoms, even if they are only mild. Early signs of lactic acidosis generally get worse over time and this condition can be fatal.'

Oh Great!!! I had better be looking out for theses symptoms then!!!!!!

Sunday, 20 April 2008

Tonight is M Night!!!

Basically tonight I start on my HIV meds

I was going to start tomorrow but felt I may as well start tonight as that gives me the whole week to access the HIV consultants if something goes wrong i.e nasty side effects

Here is a picture of me outside the GU clinic, which is where HIV is treated here in Cornwall, UK .
My daughter and her friends call it the 'sex clinic'!!
How totally undignified to be going to a 'sex clinic' for sexually transmitted diseases when the only person I have had sex with for over 25 years is my husband - and then not that often!!!!!!
And my relationship before that was with a woman - which was NO risk for HIV!!!
HIV really does not belong in a clinic for STDs - yes it is usually transmitted by sex but not always and it is not curable and it changes your life for ever, and can be fatal and even if we survive for years with it, it will kill us all in the end.
It does not belong in a GU clinic and certainly not one with such lousy facilities!!!!!
I wanted to show how abysmal the facilities are but unfortunately I felt I could not take a photo inside!!

We have a life threatening disease that affects every aspect of our lives and yet we have to attend our consultants session in a sub standard prefab type building, hidden at the back of the hospital !!

Yet thousands/millions have been spent on the Mermaid Center and the 'Knowledge Spar' i.e Peninsula Medical School

Not asking for this level of spending!!

Just asking for something a little better than the totally crap facilities we with HIV have to accept!!
Barry outside Clinic

I feel agrieved

The reason I get at Barry when Caja gets at me is I feel aggrieved that she loves him unconditionally yet he went away to work and left both me and her for months at a time to work hundreds of miles away and then he gets us both HIV.........

Childish of me I know - but this is how I feel right now .

I feel that she has turned out so well is actualy down to me and my care - not Barrys

He did not even look after her much of the time when she was young at all and even in latter years when he ddi more child care, he was at sea even more than he was when she was under 10 - so he has had very little 'hands on ' care of her

And he was a complete drunk for most of her early years and smoked dope and worked away at sea and now he acquired HIV and given HIV to me!!!!!!!!

Yet in her eyes he is great and does nothing wrong....
And I do everything wrong!!!!

Yet he would not give up his work at sea despite how much we both - Caja and I - hated it. He has always been a drinker ( but I have to say he cut down in recent years and has stopped now he has HIV) yes I have started using alcohol to cope in recent years I was not a drinker at all until about 1999/2000.

But Barry always was a drinker from the first - and caused me so much grief when Caja was young. i.e. when Caja was a baby he was really 'hitting the bottle' and he smoked dope as well and with alchohol !!!! - I never have smoked dope.

So I would come home to find him unconscious.

Usually when I worked I had Caja cared for elsewhere but the worst days were when I had had to trust him to look after her as he would throw a wobbly because he resented us paying child care unless it was absolutely necessary and insisted he look after her - so when he was home I would try to continue getting her cared for as usual by the nursery or childminder or the person in my caravan etc but often he would to let me pay for proper child care yet he was so irresponsible I was scared often to leave our baby with him -

For example - one day whn caja was abotu 2 1/2 I had gone to work and I came home to find Barry had spent the whole afternoon in the pub with a mate who also had a baby in a buggy with him, and I found Caja crawling around the floor unsupervised and he crashed out dead drunk on the sofa having vomited!!!!!

I have never in my whole life done ANYTHING like this when looking after a child!!!!!
Yet Caja does not remember any of this because she was quite young and I have to admit for Barry this was quite a long time ago. In the last 10 years or so he has really 'cleaned up his act'.

So he has not drunk too much for a long time and he has not used dope for at least 10 years and since he has had HIV he has even given up ordinary cigs !!!!!!!!!!!! But he did put me though hell for many years with his drinking and dope !!!!!!!!!!!!!

And he went away to sea despite my pleading with him to come home!!!!

It is now all in the past - he does not drink except vey little socially, does not smoke, will never go to sea again, he will never get the opportunity to have sex with anyone else even if he wanted too and is a responsible person most of the time despite HIV.......................

.....................and so I should forgive him and most of the time I do - but when Caja has a go at me as she has been for the last 4 weeks, I get angry with him and have a go at him - bad situation !!!!!!

The difference between me and Barry I guess when we drink, is that I do it out of desperation and for self medication and he has never done it for those reasons ..........

He really can take it or leave it- and when he got totally 'off his face' when Caja was young he did it because he choose too because it was fun and he could not see why not!!! He had no idea of how much it upset me - nor did he care - as I did tell him many times how much I hated it - and he choose to drink even when he was supposed to be in charge of a young child !!!!

Me - I have stayed at home, tried my best to be a good mum to Caja and sacrificed the career I could have had to look after Caja. And in later years used alcohol sometimes to cope and feel very ashamed that I did and have always tried not to and to do everything 'right'.

And yet she does not respect me and her love of me is completely conditional!!!!

I had to sacrifice any career and put Caja first because while many women with children do have careers I defy them to have a career in an area that has antisocial hours and quite often you are required to do residential weekends or trips away, is stressful, needs lots of commitment and long hours and is worthwhile but does not pay enough to have a live in nanny etc , and be a single parent or like me, have a partner/husband who works away for months at a time!!

And further have no close relatives i.e. grandparents, sisters etc or close friends that can look after your child/ren either free or for very little.

In theses circumstances you really have no option but to plan your life around the care of your child, at least till they get to secondary school - as there is no one at all to fall back on and when the 'shit hits the fan' re commitments to your job or commitments to your child, you have no option but to put your child first and tell your job to go hang!!! and by then your career has gone down the pan!!!

Especially if you are an older mum like I was as I was nearly 40 when Caja was born – and the stress of trying to continue to have a job and a career under theses circumstances was just incredible!!!!

Well that was my situation and I did my best!

I could have left her - Caja with Barry - for my career as he left her with me for his career at sea!!!!

When she was about 3 I was offered a job back in London for about £20 K as a senior worker which was a fortune then. I was so tempted, as here in Cornwall my career had never gone the same as in London, Here my skills and knowledge for some reason were never appreciated ( I do not think it was understood by most how much I had to offer and how considerabel my skills were!!)

I just never really 'fitted in ' to Cornwall youth service, to blunt perhaps, too 'London' working class, too emotionally engaged in what I did.......anyway I turned it down and stayed to look after my daughter - but this choice meant I had no career .................just a job and a boss ( line manager ) called 'Mike' who loved to see me squirm and bullied me for nearly 7 years until I said enough is enough and walked out. Even then I had to down grade my job yet again just to get away from his bullying.

So from being an assistant coordinator I became yet again an ordinary youth worker - and eventually I left altogether - It was just so boring to take such a step back and work in an ordinary youth club i.e. in a 'coffee bar' situation with a 'disco' on all the time - basically what is the POINT!! of that sort of youth work ......??????

None that I can see and certainly I do not want to do that sort of youth work and it does not use my skills at all - Bloody pointless work!!!!!!!!!!!!!

So I left - I did it on my terms i.e pulling a 'sicko' so I could get sick pay and I even managed to get statutory redundancy

And yes I agree that recently - since Caja was older than 14 I have started to use alcohol to cope too - ironically Barry cleans up re alcohol and I start!!!!!!! its an ironic world god knows why it happened this way!!!!!!

But she does not remember that Barry ever drunk at all but sees me as a drunk and him as not - she is totally wrong, but what can I say!!!

As in Caja's eyes it seems Barry is the golden boy who can really do no real wrong

So when she has a go with me, I get bloody angry with him - not his fault and I do want her to love him, but not at the expense of her seeing me in contrast to him as lacking and not loving me too!!

I want her to understand that we BOTH love her very much and whatever situation we are in now, BOTH me her and Barry are responsible for - not just me

I just want her to treat me with a bit of compassion - understand that I have feelings and get hurt too - and that right now things are very hard for me

And this HIV has hit me VERY hard!!

What the HELL am I going to do with my life now!!!!!

Killer Sulk goes on !!!

Caja is angry with me and has been for about 4 weeks. And in what I call one of her 'Killer Sulks'

Named because it kills me emotionally and Caja's sulk is causing havoc in our home and upsetting both Barry me and her!!!

In my house both Barry and Caja deal with anger mostly by sulking and having the odd dig with whoever they are angry with and by just not being friendly with the silent treatment thrown in . I am just straight about what upsets me.

Well that is what Barry does, Caja tends to freeze me out and just be unfriendly, but if I try to be friendly towards her she reads everything I say as some sort of dig i.e. real projection of how she is feeling towards me as I can be being perfectly friendly and just be asking how her day or her job went and she reads it as my being bossy or nosy or being controlling and tells me to 'fuck off' with that Caja - bitter/hard look on her face that says 'fuck off' even more eloquently than her words.

Neither Barry or Caja really ever tell me what they are angry about, or what they feel I have done, until I can not stand their sulk anymore and push them to tell me. This works OK between Barry and I but if I do this to Caja things get completely out of hand between us

Well she has been doing this for about 4 weeks. I really do not know what set her off as before this, even with the terrible fact of our HIV having to be dealt with - she was fine.

For a while she was fairly nice to me round the house and even went to the pub with me once of twice - or when I was there when she was working - and related to me like a normal human being who she was happy to have the odd chat with - and she has not been civil to me out in public for years really.

It has always made me feel so sad to see her smiling, chatting and interacting with others in a lovely way - and most people really like Caja and often remark what a pleasant person she is........................... and then to have to put up with the stark contrast of how she treats me when in public.....which is often with frozen looks when I talk, contradicting everything I say when I say something to someone she says i.e. 'it was not like that, ' that’s not right', 'no it was like this!!!' and only answering any thing I say to her in words of one syllable!!!!!

But for a while after we heard about the HIV she seemed to suddenly realise that I was a human being, with feelings who could get hurt and that I deserved a little respect when out ........and it really made me feel happy.

Then about 3 to 4 weeks ago all this changed!!!!! I do not know exactly what I said but I think it was about her college course next year - that I said the wrong thing at some point when discussing it with her ...............................and since then she has been in a sulk with me.

When Caja gets like this with you, absolutely nothing will snap her out of it, so really you have to bear her behaviour towards you and her constant quiet animosity and just leave her to get out of it herself and decide when to tell you what you have done to upset her - if she tells you at all it is often after the event i.e. when she has calmed down.

But I have ever been very good at just leaving her and ignoring her animosity

I felt I had got better of late - but perhaps not - perhaps she has just not done it big time for a while??

So she has been angry with me of about 4 weeks and I have blown up about it big time - I just reach the point when I just can not bare it another minute - this usually takes me a week of the silent/angry treatment but because she has now sulked at me for nearly 4 weeks I can stand it for less and less time.

So I had the first big blow up with her the Wednesday before last, and a big blow up with her last Monday night. And she left in a huff to go to her student flat, saying we could not live together and I was always ordering her around. Barry went to talk to her and she said she would stay away until she was working in the local pub again and then stay sat Sunday to be near work and that she would not carry it on with me anymore - Barry really thought this would be so!!!

But she walked in Sat morning, announced she had had no sleep and had to work in about 3 hours, I panicked as I know how hard she finds it to work when she is tired - often no sleep makes her throw up and she just can not work .............................

So I panicked for her and said 'Oh dear! go to bed right now !!' meaning if she went to bed right then she could have a couple of hours sleep before work.................she interpreted it as my 'telling' or 'ordering ' her to go to bed when all I was trying to do is to be caring and was worried she would feel very ill or vomit at work if she went to work with no sleep ( as she was doing a split shift 12 to 3 and 6.30 to 11.30 she would be so tired if she did not get at least an hours sleep)

Anyway she blew up on me and a BIG argument was looming as for me this felt like the last straw - she had been nasty to me for nearly 3 weeks and she had promised to be OK when she came next and then she does this!!!

But I kept the lid on it because I did not want to upset her further with no sleep and having to work and anyway I had another woman with HIV coming to visit me at 10. 30 and I wanted to be OK for this.

So Caja did not go to bed and still did the shift. I met this new friend with HIV and when she left Caja then came home in and even worse mood with me, luckily this lady who visited had gone by then it would have been awful if it had all blown up when she was there, she has had difficulties with her own grown up children I did not want to involve her in mine!!

(I know that this is Caja's agenda and because she was tired she came back in an even worse mood and very angry, but I just feel so vulnerable myself right now, and while I understand this is not a good time for her either and she has a right to be angry...................I just can not take weeks and weeks of her anger like this)

- I mean I understand that she is angry ..................who would not be angry at two parents with HIV - but that she had by that point sulked and got at me for nearly 4 weeks and also I do feel aggrieved that it is me she get angry with not Barry.

I mean I have always been here for her, I have never worked away like he has, I have done my best and always tried to give her everything she wanted within reason and make sure she could do all the things she wanted in life.

Nor I did not acquire HIV first or through casual sex, and yet it is me she is angry with!!!!! I can understand she is angry but I just wanted/need her to not be so hard on me all the time and just give me a little leeway and understand that I do love her and if I say something that upsets her I really do not mean it the way she always seems to take it!!!

Anyway that was for me the last straw, and she said some horrible things to me as she always does when she finally decides to tell me she is angry - but she did not actually tell me even then what she was angry about!!!!!!!!!!!! But she said I am always ordering her about, when in fact I know that this is not my intention , what she interprets as ordering her about is when I say what I intended to be 'mummy and caring' things.

OK she is not a child anymore, but she will always be my child and while I must learn to try not to 'baby' her can she not give me a little lea way and understand I do it because I love her?

I say stuff like -
'Why don't you lie down and have a sleep' ( when she is tired - I worry about her beign tired as she does not cope at all well with it and can often get physically illand sick/vomit jsut because she is tired)

'Why don't you have a shower' ( when her hair looks greasy or her face spotty, I'm not in my heart criticizing her or being negative, it is just that as her mum I want her to look her best and know that a good shower will help and also because in her job - chef/waitress she needs to look un-greasy and as nice as possible - and I am so proud that she works so hard and is considered so good at her job so I want to help her!)

'Can you tidy up your room' ( this one is not actually motivated by my wanting the house reasonable tidy as I have stopped worrying about this anywhere near as much as I did , but by the fact that I get quite distressed when my bedroom is in a mess, makes me feel disorganised and makes my head feel 'messy' too. I realise this is probably/is not so for her but I just say it without thinking and it is a 'mummy caring' as well! but she just sees it as my being negative and ordering her around)

'Drive carefully and slowly especially on the Penryn Road' ( this is entirely motivated by 'mummy care' as on that stretch of road there is at least two major accidents a year, usually fatal for someone, and nearly always involving at least one young and inexperienced driver. I do not know what the problem is there, but it seems to have something to do with the road combined with inexperience, and the last person to be killed on it was only a few weeks ago and it was tragically a lovely young woman with so much to live for - and I do not want Caja to join the statistics of people that have died on that road and especially not the statistics of young inexperienced drivers who have died on that road and/or have caused others to die!!!

This Road really is a death trap, especially for young drivers, see here for various accidents that have occurred along this stretch of road – so of course I ask her to drive carefully as I love her:

This is the latest one this was a young woman Hannah from the village who later died

Here is her face book memorial:
And I warn Caja about that road because I just do not want her to join the huge list of deaths on that part of the road

The thing that hurt me most yesterday was that she said that when she left home for a while when she was 17 she left because I was a ‘drunk’ maybe I am, I have never been in denial that I drink too much. But I just do not see that the reason she walked out of home was due to my drinking - it did not help but it was not due to it.

She left home because then, as now, she got into a massive strop with me which lasted months and I just could not bare it. Day in day out she would treat me with disrespect, snap at me, tell me to fuck off, be rude to me when out and with friends, make a complete mess and give me no help round the house at all and generally do exactly what she has been doing again now.

Of course I was in the wrong because I just was not able to hold it together when she did this. She sulked I blew up massively and when she did not stop I blew up every day …..But all I really wanted to happen was that she stop!!!
It was lawful, I felt actually bullied by her!! mentally, and she felt bullied by me.

If she could not stop sulking at me I could not stop blowing up all the time. I felt that no one but me saw that it was not all my fault and that she was angry with me and not really the other way around. And adults, my friends, got involved in a way that I am sure they meant to be helpful, but ultimately made it all worse……………

and yes I resorted to alcohol in the hope it would deaden what I was feeling and I could just tolerate her constant animosity towards me ……….
But of course alcohol made it worse – alcohol always makes things worse – it never helps!!

I so hope/wish/pray that this time her sulk and anger towards me does not lead to this result i.e. complete estrangement between us.

But already it is having a dire effect on us all

Barry and I always end up arguing and I end up getting at him as I just can not see why I get all her anger when he was the one who went to sea and left us at home, and he is the one who got us HIV – yet she love him unconditionally and is rarely rude or disrespectful to him

So please Caja – let me off the hook – please. I really did and do my best. I know my best has not always been good enough, but give me a little compassion. I love you very much, always have, I mean well and I am in a terrible place right now re coming to terms with HIV.

Caja whatever I did to cause this anger – please stop now and forgive me? Whatever you feel I have done I did not mean to anger you , and I have no idea what I have done unless you tell me! So if I do not know how can I put it right???

Thursday, 10 April 2008

Self Doubt

I was not able to support anyone on the Post Natal Illness website the other night, when a moderator was in crisis - and this made me have doubts about whether I should carry on with doing this support now I have HIV?

On the one hand I do not pretend to be an 'expert' or to be doing it from any other perspective than someone who has had PNI and still has some issues and difficulties stemming from it - And that I am equal to all others on that forum in that we all offer each other mutual support and self help as sufferers and survivors.

On the other hand it is expected that I have more responsibility than this as I started the service and do the administration for the charity

So should I even be attempting to offer even this mutual support at all if I could not offer it at all the other night when it was needed?

I did try to support her - but as she would not speak to me so could not really and I felt pretty useless that as due to my own concerns I just an not able to support people very much right now

I also felt very guilty that I could not talk to another moderator when she rang or ring her back i.e the next morning when she rang

But just could not as I was trying to calm myself to go to the clinic that morning a that was the only thing I could think about - felt so bloody ill and stressed so just could not that morning deal with anything but getting myself to the clinic

So I now consequently have much self doubt and continue now to have this about whether I should be trying to support anyone right now ..................i.e I end up wondering if I should be continuing to do this - the forum and charity? - i.e if I can not be there for people in crisis due to PNI because of having what is such a big and overwhelming issue myself - and one that is not at all related to PNI..........

It is because they are such different issues, with such different concerns, symptoms, outcomes and with completely different considerations from PNI to be made in order to learn to live with it cope with HIV and the treatment that is needed

That I wonder if I can/should be trying to support people with PNI when I am overwhelmed by trying to learn to live with HIV?

But at the same time - do I have an option?
I started this - it is now a charity and I would hate it not to exist because I withdrew - and the reality is that as others 'move on ' and need to

i.e Another moderator has resigned as of the end of May from the forum but will still be a trustee..............most do eventually resign and I fear that if i did also there would not any longer be a 'consistent' person to recruit more mods etc and keep the whole thing going?

So my fears are that
1.I should not be doing this right now , either for me or for those who rely on me for support as i will let them down
2. But if I do not stay to be a consistent person always here - then the forum, and the charity may collapse.

Just some of my thoughts - as this is a huge and ongoing issue for me at the moment

i.e the position re me not having much room in my heart and emotions for anything but HIV at the moment and therefore feeling very detached from those going though PNI and feeling not able to be supportive

Is a huge worry for me right now and one that a moderator being in crisis has made all the more worrying.

Made the clinic - despite being so stressed out by life

Well I managed to get to the clinic yesterday - keep it together and talk to the consultant in a calm- ish way - pleased with myself that I did, it was not easy

This was despite events the night before and that morning that added to the stress I was feeling

One I have had a bad stomach since Sunday night and i have difficulties doing anything when I feel sick - can cope with most other illnesses but if I feel sick I jsut do not want to leave the house - so when I woke up yesterday morning still feeling sick and still with stomach cramps I was so worried that i would not be able to make myself go to the clinic while feeling so sick

I have had nausea, stomach cramps and this awful feeling like a football in my stomach. I have no idea whether this is HIV related, but it is funny that Barry has also had this feeling a few times of late......and while I always get stomach bugs and a bad tummy due to food intolerance and other things he never has, until he became ill with HIV?

I am thankfully feeling better this morning - my stomach seems to have calmed down. Not fully better yet, but a lot better than the last few days

I do not think my sickness was entirely anxiety over the clinic visit - but it probably did make it worse, as for whatever reason I have been very unwell for several days.

But also Caja and I argued the night before the clinic visit and arguments with Caja are theses days the only thing that can truly push me over the edge - and as I was already stressing over the clinic visit - it did.

But Barry rescued the day a little as she went to work and said she was moving out again - going to her flat and not coming back!!!!

And while I think it is daft we are paying for a student flat she never stays in - I do like here here, we argue about things like her not doing any domestic chores at all - she does not even do her own washing most of the time as Barry does her washing for her as I don't like washing much myself so he does most of this job while I do the housework and most of the cooking.....
and Caja will cook, but never washes up or tidies the k8itchen and NEVER tidies her room or any other room!!!!!

But I love her and prefer her to be home - As far as it is possible with HIV I want to be a 'normal' Family, whatever that is and while when Caja does go to University and leaves home this is fine..........................
BUT i can not cope with her going off in a huff and not coming home for months as she did when she was 17!!!

So Barry saved the day by going to collect her from her work and persuading her to come home and not go off in a temper - and explaining to her that I was very stressed/scared over the clinic in the morning and was feeling unwell, so over reacted and shouted at her - the problem between us is not that we argue as anyone living in the same house argues

But the difficulty is i can not stand her being angry with me and withdrawing her respect and love........which is what she does - and her love for me is not unconditional as I would want it to be.......but very conditional. And I just find this hard to cope with .

as when I am angry with her I still love her, but she does not love me when she is angry with me - or at least she says that she does not - and I have probl3ems with coping with rejection and withdrawal of affection/respect/love ...

So when Caja and I argue it all goes wrong and gets out of hand because i over -react and she then says she is leaving home and this reduces me to hysterics!!!!!!!!!!

This is what happened and it was jsut really bad timing when I was feeling so unwell and was worried about the clinic in the morning.

But Barry persuaded her to come home -0 she did and everything seems fine now. I think had she gone that night she may not have been back for a while and we both would have been upset, so I am so glad she came back as she does not really want to live elsewhere - least I do not think so?

The other thing that happened was one of our moderators on the Post Natal forum had a crisis............. it all seemed to kick off about the same time I was having this with Caja

and due to my own problems I was bloody useless and unable to be of any help to anyone!!!!!!

As of course this affected some of the other moderators as well , as we do feel very close to each other and if one person is in crisis it affects us all.

but I was unable to help at all - could not even speak to one that rang me, not even the next morning as by then I was still feeling ill and trying to get my self together for the clinic.

So this also threw me into self doubt as to whether I should be involved in the PNI charity I started any more!!

will write about this later

But at least I did get to the clinic and discussed my starting HIV medication - probaby next week

I will write about this also later

Monday, 7 April 2008

We are the champions

We are the champions - of the world.

My daughter Caja plays piano and one of the things she plays most often is this song by Queen. I think she plays it just because she likes it - it has nothing at all to do with our HIV status and I do not know if she has made the link at all?

She will often play it over and over again and did before we knew we had HIV.

But I am afraid that theses days when I hear her playing it I am often cose to tears.

I guess it is the association that Freddy Mercury was one of the first people to die of AIDs that the 'rock' and mainly heterosexual audience took any notice of??

Of course Freddie was never straight - something I was always aware of but it is surprising how many heterosexual rock fans of the time, just did not get this .............!!!
Nor the very BIG hint in the bands name - Queen!!!!!

That always amazes me how many did not have a clue he was gay or at least bi and would not believe you if you told them - because I did try!!!!!!!

Anyway Caja is playing this right now

We are the Champions ...................

And while I know he probably wrote this before he was aware of his HIV - but then again I am not sure - as the words are so appropriate!!

We are all damn champions who have to live with this in our lives


I've paid my dues - Time after time - I've done my sentence But committed no crime - And bad mistakes I've made a few I've had my share of sand kicked in my face - But I've come through

We are the champions - my friends And we'll keep on fighting - till the end - We are the champions - We are the champions No time for losers 'Cause we are the champions - of the world -

I've taken my bows And my curtain calls - You brought me fame and fortune and everything that goes with it - I thank you all -

But it's been no bed of roses No pleasure cruise - I consider it a challenge before the whole human race - And I ain't gonna lose -

We are the champions - my friends And we'll keep on fighting - till the end - We are the champions - We are the champions No time for losers 'Cause we are the champions - of the world -

Thursday, 3 April 2008

Feel a lot better today

Since Barry talked to the consultant yesterday I feel a lot better.

As she agreed - through him - we could look at HIV medication for me ...................

So after an absolutely terrible few days when I felt, due to the HIV nurse saying I had refused medication and it would put my consultant in a 'difficult' position to change my mind - like I had just been left to die ................

I now feel there is some hope I wil get the treatment I need

Also I have been given support by some good friends - thank you - you know who you are!!

It is a shame I seem to need so much support from others in getting my needs and wishes listened to when it comes to medical professionals, but I guess it has always been this way? It has sort of always gone wrong when it comes to me and medical staff.

Partly because I am so scared of them and the power they have - i.e power to treat the condition I go to them or the power to not - scary stuff for me who was abused as a child - and once by my GP as a 11 year old child, something I have never mentioned to any one before - this probably has a bearing on my fear of medical professionals - and am terrified of anyone 'medical' who has the power to offer or withhold treatment, asserting their authority over me, especially when as now it can mean the difference between my future life or earlier death.

So I come over angry and defensive - which some can cope with OK - but for others ( often those who are not confident in themselves about their own worth, self esteem as a person and maybe their medical skills/status ) it puts their backs up and EVERYTHING then goes wrong!!

But I have a good feeling now that it may be OK????

If at least I can have a 'proper' conversation about going on HIV meds and when - initially with Barrys support.

But lovely and caring of me as he is he often does not pick up quick enough on what is happening for me during a consultation with a medical person - so a really good friend has offered to go with me in the future - she has helped me before with other consultations with medical people and does 'pick up' on what is going on for me and has really helped before- I think it will help in the future with this HIV.

So I now have more confidence that I can get my medication and treatment right from now on with the HIV people

Fucking hope so!!!

Wednesday, 2 April 2008

Barry took that letter to the Clinic today

Barry took that letter to the Clinic today.

He gave our consultant the letter and gave a 'shortened version' so she would not have to read it then and there.

Apparently she said fine to medication for me - that she understood my position in wanting to wait,
that I wil have to drink less if I am to take it - fine I can do this :-}
and that I need to spend some time with the pharmacist to choose what HIV meds are right for me - that is fine too

And has made an appointment for me for next week!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The questions I have to ask - are

If the HIV consultant is fine with my taking meds and was not under the impression that I had refused them

Why dio the specialist nurse say otherwise????????????????

If it is not a problem for me to take my time and get to the situation that I want to take meds at my own pace
and if an expression at any point that I am not sure about taking HIV meds DOES NOT mean I can not change my mind at any point.............

Why did the HIV specialist nurse when I phoned on Friday say that I have refused meds altogether and this would cause 'problems/compromise' .........the consultant
and leave me......................................

Totally terrified and traumatised since Friday afternoon that I have jsut been left to die with no medication?? As I did not otherwise have an appointment until another 3 or so weeks and in the meantime I am having no HIV treatment

Until when I got up the courage to send the letter to my consultant with Barry when he went today?

Did this nurse not understand the effect her words would have on someone in my position? How it would distress me for a whole weekend and cause me to feel desperate

maybe not????????

I am going to have to learn to treat both this illness and my visits and communication with the clinic, from now on in a 'businesslike' way.

And not let my emotions come into it in any way.

Bloody tall order given what HIV means to me and my life - but it looks like it is the only way ?through

I was told I have refused HIV medication!

I think this has started to be sorted out now - I so hope so as it is so very important for me it is - basically a matter of my life !!

But I have been very distressed since Friday afternoon when I rang the HIV/GU clinic to get the results of ym last CD4 tests.

I did not talk to the consultant! You never get the consultant. If you phone the clinicyou get the HIV specialist nurse and she them -passes on your enquiry to the consultant if she feels it is 'necessary'!!!!

I phoned the clinic last Friday 29/03/08 to get my latest CE4 results and because I found that they had gone down slightly (I do understand that this is not significant, but it is still in the wrong direction for me).

Because of this news and because my next appointment with the liver consultant is not now until 23/7/08 I felt I can not wait until I see the liver consultant again to make some decisions. So I felt it was time to discuss going on HIV antiretrovirals and to get my treatment with them established quite soon.

However the HIV specialist nurse seemed to be under the impression that I have refused to go on such treatment?

God I was so in shock, when she said this!!!!!

Where did she get this from? - does she think my wish is to sit here and wait to get AIDs related illnesses and then wait to die????

In fact how could it happen that I have 'apparently' made the decision not to go on HIV meds without my knowledge of this and without my ever having a conversation about going on meds with my consultant ?????

The nurse further added that having refused treatment it puts my consultant in a compromising position if I am now asking for it.
(This may not be word for word but it is the gist of what was said during the phone call)

It w as my understanding that as an HIV patient, it was my prerogative to air my fears at any time, go through the mental process/adjustment I had to, and decide at any point that I so wished to go on HIV medication? This has been a huge shock which has required much adjustment, and emotional pain, and it was something I needed time to come to terms with.

And as far as I am concerned, I have never absolutely refused HIV treatment

This phone call made me realise how great the misunderstanding between us - me and the consultant and indeed the whole HIV team there - that may have been.

I accept totally that this may be due to the fact that I have been in complete shock over my HIV diagnosis and the ongoing implications to my life and consequently I have been ‘understandably’ very distressed during my three visits to the clinic and therefore have been offloading and sounding off.

However even though I accept responsibility for my attitude leading to any misunderstanding, at least in part, I obviously can not continue indefinitely, with HIV, with a CD4 count under 300 and without HIV any medication, as my very life and health may depend on getting established on such medication as soon as is possible?

I also did not realise/beleve that it would compromise my consultant in any way, i.e. to delay or even refuse HIV medication and then change my mind at any time in the future?

Surely this is up to me!!!?????

I have indeed profusely expressed my fears, concerns and distress, but not refused HIV medication.?

In fact I am not aware we have ever had this discussion i.e. about whether I should start HIV treatment, when, and the pros and cons for me of such treatment?

As I said to the consultant I am someone who finds taking medication difficult and this is something that will be very hard for me, but something obviously I have to do?

I wanted support for this and understanding of how difficult it will be. But I seem to have conveyed the idea that I will not go on HIV medication when this is not the case?

In offloading /sounding off I was looking for understanding and support, not for it to be taken as if my fears of taking this medication was my final word and what I wanted was to never take medication for HIV and just wait to get ill and perhaps AIDS. I do not want this. I have many responsibilities and a lovely daughter to stay alive and healthy for as long as possible.

I expressed my my fears, confusion and total shock in an open and perhaps expressive way but I was NOT saying I did not want HIV medication!

So I wrote to my consultant to make it clear:

1. That my initial wish was to delay taking HIV medication myself until Barry was established on them. My reasons for this is that I/we knew/know that taking such medication will for me be very upsetting and because Barry has been so unwell I wanted to be in a fit state to care for him, rather than being preoccupied with the difficulties I will have in taking this medication

2. Now Barry is established on his medication, doing far better and much less ill, I would like to start on HIV medication myself.

3. I will undertake when I next come to the clinic, to discuss this in as unemotional manner as I possibly can and want to now be put on HIV medication as soon as possible
Therefore I would like an appointment as soon as possible to discuss this

If this is not possible between us – i.e. the damage has been done to our working relationship by my attitude and your response to how I had/needed to cope with my diagnosis - I would like to see another consultant

I would further like to reiterate that my anger is not aimed at you personally; or anyone at the clinic. I am very sorry if my attitude/response to my HIV has caused anyone any difficulty.

My anger and distress is with the fact of my HIV positive status and the way I acquired it, i.e. the fact that as well as HIV I am having to adjust to the reality that the man I have been faithfully with for nearly 30 years was unfaithful to me and brought this horrible virus into our lives – a double ‘whammy’ I have to come to terms with.

It is unfortunate that I have reacted this way, but I was not to know how this dreadful news would affect me nor have I ever been in a similar situation, so the way I am reacting is quite a surprise to me too.

But it is not in any way directed towards you or your team.

What I need from you and the HIV team right now is the best medical treatment you and your team can offer that will give me the best change of living as healthily as possible to see my birth daughter, and everyone else I care for, through the next crucial years of their lives.

And I want you to help me to do this.

I would deduce, from my extensive reading that the only hope of a longer and healthy life from now on is to take HIV antiretroviral medication?

So I now want to do this as soon as possible