Sunday, 24 February 2008

Medical HQ - Toad Hall - Oxygen Hangover Cure

Well our home is turning into medical HQ

We now have an oxygen machine in the living room with meters of tubing so Barry can use it in as many areas of the house as possible - this is a machine that separates oxygen from the rest of the air and deliverers it though a tube to the patent.

But mostly he is in bed now, he feels cold all the time and has no energy to do anything but stay in bed.

Plus 2 spare oxygen bottles in case of a power cut and smaller bottles that he is supposed to take our with him if he goes in the car or anywhere else.
Oxygen is supposed to be a GREAT handover cure - so if I get stressed and drink to much I will give it a go and let you know.

Barry also has a bone marrow biopsy booked for Tuesday next week and I have a MIR scan appointment in a week or two.

Its turning into a hospital rather than a home

A lot to adjust to in such a short time !

Friday, 22 February 2008

Barry is coming home for now

Barry has spent the day at the hospital, having lots of tests. he saw a respiratory consultant today too - Coutes I think - to investigate why his oxygen saturation's so low as he also had a chest X Ray and his lungs seem quite clear so this is quite puzzling

The good news is he is coming home!! They are not admitting him - they seem to understand we do not want this at all - and anyway all is not lost - as they say he may well still pull though this for now. As they do not think it is PCP Pneumonia - which is really good news

But it often happens that when you start on anti HIV meds that any bugs you already have in your system that if you did not have HIV you would never have known about as your immune system fights them and they have laid dormant - start to reproduce

The thought now is that he picked up some sort of bug that is affecting his lungs while working in the places he did and this has now - since the HIV meds - started to get the upper hand .

So he is to have a bone marrow biopsy next week to try to find out all the bugs that are in his system and find ways/medications to deal with them - he does not want to die just yet and they are not going to let him without a good fight.

But he is having oxygen delivered this afternoon - they have just rang to say it is on its way - a portable small tank for when he goes out and a big one for home - he needs oxygen at then moment as his SATs are so low.

This is quite a drastic thing to have to deal with - that Bary now has to walk round attached to an oxygen tank. And lets face it, you have to be pretty ill for this to be your situation.

But we are still BOTH going to fight this thing - at least to try to make sure he gets well enough to have a couple more years

Thank you Barry for Valentines Day

This is a very personal post – But everything important to us about our journey through HIV will be going into this blog – so if you do not want to read personal stuff, just don’t ............................

Thank you Barry for Valentines day – or rather Valentines early hours of the morning.

It started out badly – but turned into our best Valentines Day ever

At 8.30pm on the 13th February 2008 you took your first HIV antiretorvirals. I wanted you to start on them as I so want you to get better enough to be with us for a year or two.

But you took them and went to bed – and then suddenly, for me , everything finally crumbled.
It hit like a hammer, that you, and I, are HIV and you have AIDs and medication and hospital visits and fear about each others health will be our lives from now on - and our lives may well be short.

I tried so hard to cope with my emotions without you, but got increasingly distressed. I tried everything to cope with my feelings alone. I put on my music and tried to drown my feelings in loud music, cigs and wine. .... I phoned a friend or two - Thank you so much Mel and Amalia, for letting me dribble on that night - you will not know how much this meant to me I just needed to talk to those who were from years ago - who I knew before I met Barry - thank you.

I tried to go for a walk outside with the dogs. I went down the lane, looked at the night sky - the stars were wonderful, it was a clear night, The sort of night I love about living here, but I still felt just so alone and just so upset.

You were upstairs battling with your own demons – i.e fears of how you would react to the medication and that you could not keep it down, fear that you may not respond and die - and I was battling with mine…............. scared because my turn with theses drugs and the illness you have had is yet to come –
and that you may not then be alive when it does to support me through it.

In the end I came in side and raved, threw things, screamed, raved. I did not want to wake you up and in fact I did not, you slept right through it, you could always sleep through most things.

You did not wake until I went up the stairs because I really was not able to calm myself down and needed you even though you were asleep and I should have left you that way.

But you were so wonderful.

In the past you have always reacted to my getting distressed by cutting off from me and trying to dismiss it and me and when that does not work you get angry. What you have never done is given me what you give me every day otherwise - when I am not ‘off on one’,

i.e acceptance that even if I am upset about is not your issue, I just need acceptance that is is an issue for me and even if you do not understand it, that you accept and understand that it is upsetting me and give me understanding love, comfort, time and space to talk about what is bothering me and friendship. a bit idealistic - but why not strive for what you would like?

I always knew that this was all you ever had to do and whatever the issue, if you gave me this I would quickly calm down.

But at about 12.30 am on Valentines Day I was so desperate I woke you up and you were wonderful.

For the first time ever when I was upset you gave me what I need. You were prepared to stay up all night if needed and talk the night away. You have NEVER done this before.

You did not cut off, you did not dismiss my distress or my fears and we talked and talked. I know that this will sound morbid and not at all romantic but we talked about our deaths. We decided it was best if I went first – and this is right as I need Barry’s support to live with HIV and I also need his support to die with it.

He on the other hand is very emotionally self sufficient, so even death he will just get on with it in his own way.

The trouble is it is unlikely I will die first.

We did talk about my just not trying - i.e drinking what I want when I want, smoking if I want to, my not taking any HIV medication – in a way to catch up with him.

We have not decided against this, as I really do not know if I can stop drinking anyway, nor do I know if I could ever take the HIV medication – but we decided to see how he is first. See if he can get back to health and have a few years with us. And also we have Caja to think of so I just can not selfishly try to die – as if Barry does – and he will not live that long - she will be on her own.

Then at about 3am in the morning we made love

We have not since September as he went away to sea in September and when he came home in November he was too ill since then. We did have a fumble, mutual masturbation, sometime before Christmas, as he was not up to anything more. I have missed it sooooo much.

But Valentines day at 3am we had some good sex
It was better than it has ever been –there is nothing like impending death of at least one of you to heighten your senses.

But also it was good because we have lost all inhibitions, nothing else to pretend or hide.

We thought we were like this anyway, but apparently not. Those of you who are well and have partners, please for us, let it all hang out, enjoy your sex life and intimacy, do not hold back from each other at all, as one day it may be too late.

This feels like it is too late for us right now – as Barry is back at the hospital today and he is too ill to even think about sex –

And it might be that this may have been the last time we ever make love. So this is why I have written it here as it was so very important to me.

It probaly will be, Barry is too ill, and I refuse to risk passing this horrible virus on to anyone after he dies, even safer sex does not seem safe enough to me right now!!! And anyway who would want sex with a women of over 55 with HIV??

So it may have been the last time I make love to another person for the rest of my life - this is a bloody awlful thought!!!

This is so hard for me as sex/intimacy is very important to me and while I have HIV and my immune system is very compromised, I do not as yet feel ill in any way that has hit my libido at all. And I want at this time to be close to Barry – more than ever I need the comfort of sex.

But this may not be now

So thank you Barry for valentines day. It was wonderful; as long as I live I will remember it.

Despite being awake until three in the morning and him being unwell, the next morning Barry went out and bought me a big heart balloon. It is still here next to my desk, but is deflated now – As we both are

Barry in Hospital again?? Hope not!

I was beginning to feel that life was a bit more 'normal' and be hopeful about Barry.
But he was coughing over the last few days and we knew things were not right again but hoping it was not too bad. So he went on his own to the hospital this morning to find out.

Unfortunately his breathing has gone right down so his oxygen saturation is too low and he is now at the hospital having a barrage of respiratory tests.

He may not come home - or rather come home to get his car back here, but have me drive him back to be admitted again today. This is very likely - waiting to find out, but the tests will take some hours so will not know till later.

I am so scared he will die and die in hospital and I will not be able to be with him
That he may die is a real possibility - it has been for some time.

But I want him to die at home.

Thursday, 21 February 2008

The Good News!! - Caja on a degree course

The good news is that Caja heard today that she has been accepted on her degree course starting in September.

It is a degree course, starting with a two year foundation degree and then moving on to Plymouth UNI for a final two years to get the degree

And not the complicated way around - access course - as she thought she would have to do - and then the degree - she now does not have to do the access first.

And of course this helps with the finances as she would have had to pay to do the access course which would mean we would have to pay and she would not have got a grant as an independent Higher Ed student, not be eligible for a student loan - so we would have had to continue to pay her fees and all her living expenses - so this will help us too!

She has to do the foundation degree at Cornwall college in Culinary Arts for two years and then if she passes the two years of this she will go to Plymouth UNI to do the final years and turn it into a degree in Hospitality Management.

Will write more when I can, when I feel able - but I am so pleased and just so happy for her.

She has had a year out doing a chefs NVQ, due to her not concentrating on her A levels and thus passing but not with good grades - but that was not her fault as a lot was going on - and also her not being at all certain about what she actually wanted to do then.

Most of her friends have been at UNI since last September and she has felt a bit 'left out'.

But she made up her mind to do this degree a few months ago and despite not having the exact 'right' UCAS points - she had enough to get on the course but apparently not in the right areas - but her current NVQ course lecturers have decided that she has shown she can do a degree and are going to get her in on special recommendation .

She has got this by her own efforts. If she had not done so well on her NVQ chief's course she is on now, she would not have got into the degree
She deserves this!!

This is such GREAT news!

Barry is ill agian

I just wrote this to a friend a few minutes ago - to save writing it out again this is the position tonight

Barry seemed to get better from the PCP pneumonia.

Since he has been out of hospital he seemed so much better and was doing a few things around the place for the last week or so and was eating like a horse and putting on the weight he had lost
And they started him on HIV antiviral drugs - so we were so hopeful - but in the last day or so the PCP pneumonia has come back, so I am pretty sad right now and very worried we will not get the few years together we so hope for.

He has to go to the hospital first thing tomorrow to get more medication and I guess to see if he needs to be admitted again - but he is going to request that if at all possible he is treated at home and not in hospital - the last thing he or I want is for him to be in hospital, especially if this thing does kill him sooner than we hoped.

It may not come to this as he is not yet anywhere as ill as he was a few weeks ago. But I do not think we can at this time not rule out that he will be and that AIDs will not kill him soon. - Sorry to sound so morbid but it isn't in some way - as this is the true position and in a way we really are coping very well.

We are closer than we have ever been and I do not think many couples are privileged to be as close as we have been or as close as we are now. The funny thing is - that I am so happy we are now together and he will never again go back to sea - even if that time is short in a funny way it is a great relief to me - I really hated him going away that much!!

Of course I would swap him being ill for him going back to sea in a flash- but this will never happen so I am just glad he is here right now and we both want him to stay at home - whatever happens.

We have decided to speak out!!!!

Barry and I have decided we will 'go public' about this!

I already have in a way as I have told all people I wanted to tell for my own reasons and support - but now we have decided that it may help others given the situation regarding HIV in Cornwall, to be totally open about it.

I do not really need anything further from people at the moment, except their friendship - and to be able to tell them about it and they not judge me/us for having HIV.

However I do want to have peer support from other women who are HIV positive - but it seems this is not at present possible in Cornwall as I will explain below.

I am indeed looking after Barry, but he is also looking after me. He always has/we always have. We are both looking after Caja, as are her friends.

The only trouble with Barry's and my relationship in the past that led to my needs spilling over, especially once I began to feel unwell about 2 years ago - was that he was at sea for months of every year, and that I hated it yet he refused because he was too scared of not having a wage to give up his job and stay home, even though I was worried about my memory and my escalating mood problems as well as feeling unwell physically.

As when he is not at sea his support is all I have needed apart from my friends company. It was only when he was away and the plug was so suddenly and regularly pulled on that support from him that works so well for me, that in the last couple of years or so when I have been feeling so peculiar/odd and did not know why .

But now he will never go to sea again and not leave me except for death - so while he is alive we can support each other and not put to much on others. It is not fair to, as this is not their problem, but I do need friendship, that is all I have always wanted/needed from people really.

However Barry has again become ill with something called PCP pneumonia which often kills those with AIDs. He did have it and seemed to fight it off it with the help of hospital and drugs but it has now come back - I truly fear he will not live long and
....then I do not know how I am going to get the support I will need.
But for now it is OK. And I will now try never to upset anyone and ask for support if it is inappropriate.

But as for the worry people will judge us that I mentioned above - this seems to be a problem for people with HIV in Cornwall - we in fact have not experienced it as yet - but we keep being told it exists

We have not had this - all of our of our friends have been great ....... but I am repeatedly told that others have been really discriminated against with HIV in Cornwall

I have only had one very adverse reaction and another milder where she just will not talk to me anymore, otherwise everyone has been wonderful!!! And it is apparently very rare when you have HIV in Cornwall not to have huge adverse responses - we are very lucky!

It is, according to the HIV clinic, those few in Cornwall I have spoken to who know about HIV, and the HIV support service 'Kernow Positive Support' a rare to experience as little prejudice as Barry and I have so far.

Even Barry's very 'Cornish' working man' friends have been absolutely great!!!!!! This is probably because he is a lovely person and has been a good friend and loyal to them for over 20 years. I am pretty certain that if they had not loved and respected Barry so much and known him so long the reaction could/may have been very different?

And for me - I mostly do not become close to or worry about the attitudes towards me of anyone that may be bigoted about any issue, especially one like this. However those in this village community a few who have ‘heard through the grapevine’ about our HIV and who I expected to react badly have actually been marvelous too - but then again we have lived here for over 20 years, I have done a lot for the community including being the chair of the village committee for about 10 years, raising lots of money for the village including enough to convert a chapel into a village hall, the play area, and I used to run many village events, and at one time the youth club etc - so I do have respect - more than I knew until now.

However the reason I feared discrimination so much - and we may well yet meet it - is because this was the first thing we were warned about by both the HIV clinic and the local HIV support service. We were also warned, many times, not to tell anyone about our status!!

But we just are not built like this, and especially me.

However we were told not to tell anyone because those in Cornwall with HIV and who have been open have often met will appalling prejudice.

Consequently few, if any, are 'out' about it and even the KPS charity offices and support centre has no identification so that no one nearby will know what the centre is for. When we visited and as the door was opened, I asked 'is this the HIV service' as there was no sign to tell us we had come to the right place!! so I was not sure and was told to shussh until I got inside as you were not supposed to do anything to give it away that this building is a HIV support center!!

I find this all awful, but understand that people are entitled to their anonymity if they need it when they have HIV..............I respect this but not that the charity itself can not be open about what they do?

But what really shocked me was when I was told that while men apparently do meet up to talk about their HIV at the center and otherwise meet and support each other - I was told also and that the KPS charity office staff are all men, I think all with HIV -

And pretty much, from what I have been told so far, most women with HIV in Cornwall are hiding away in their homes, both struggling and probably alone, with HIV and also running scared of the prejudice and adverse reaction that are terrified they will get!!!

This for me is so far only hearsay - I have not yet been able to check it out for myself. But I have asked several times to be put in touch with women with HIV or any women's support group or network and have been told that the position is as I have written and that there is no women's' HIV support group/network!!

I am going to go to the drop in at the support center next time I go to the clinic - not next week but the following Wednesday - and maybe what I have been told will hopefully prove to be wrong and there will be some women there, or some I can be put in touch with - I do hope so, I will write about what happens on this blog

But consequently, so far, this means that for me there is no support whatsoever!! Well not the peer support from women that I badly need right now!

I desperately want to speak to women with HIV face to face - I have been talking on the telephone with a woman in London , with HIV, from Positively Women who does telephone peer support - but I really want to talk to other women with HIV face to face.

I do feel my needs are different from men's, either gay or straight, but it seems the other women with this in Cornwall are scared to tell anyone or even tell or meet other women with it!! This is a terrible situation!!

I intend to do something about it, if I possibly can and if I am given enough time before I get really unwell.

As the only way I am going to get the support I need for myself is to make it this support - and I hope to start a support group for women who are HIV positive.

Positively Women based in London who said they can help. KPS say I can use their building for meetings.

However I am aware that I am probably not the best person to start such a group right now, nor will I be able to do it until I have at least accepted the situation and worked round/processed my feelings and this could take sometime.

So for now what I /and Barry intend to do is tell people - both of us just can not stand the conspiracy of silence that we found there is in Cornwall around HIV.

We respect others with HIV right and need to keep it silent and have been told that they have good reason too. But we do not feel we need or want to.

We have been told that many with HIV in Cornwall, both men and women, if they are not yet ill and controlled by HIV medication are often trying to hold down jobs and quite a few women - and some men - have children still in school. And most who have attempted to be open about their HIV have experienced discrimination that has affected their lives badly, such as losing their job - employers do not give HIV as a reason but they still shortly afterwards lost their job! Others have had to move and change their children's schools or been ostracized from their community.

That most women and even a lot of men with HIV, do not even access the support centre. A HIV counselor I met recently told me (she did not break confidentiality and did not give names, she was just was giving me an example or how scared people are - especially women - in Cornwall of talking to anyone about their HIV status) ...............that she once saw for the first time a women who has been positive for over 4 years and finally agreed to counseling, and that first session was the only time she had openly spoken about her HIV to anyone - even at the clinic she would avoid talking about anything but medical needs - apparently there are many more like this.

But Barry and I can speak out and intend to and probably will quite loudly.

It seems for some reason we are in a different position from most with HIV in Cornwall and the reasons may be:

  • We have not - as yet - been ostracized by our community or our friends, and do not care if those who are not already part of our lives react adversely - as at most it may make them think and at worse they will avoid us which does not worry us in the least!!!

  • We do not have a school age child or children and Caja is fully aware of the position and has told the friends she cares about and their parents know and all have been fine towards us

  • We do not have to try to earn a living anymore so we have no employers to worry about. Barry will get a pension which will keep us well enough without benefits, not great, but we will manage - except DLA which he may get as he is so ill - and if he dies I will get his pension - he has worked very hard for this.

So while I am not, as yet, mentally in a position to start a woman's HIV support group.................

What I - and Barry - intend to do for now - if the position as we have found it so far proves to be right - is to try to speak out about HIV and try to change the lack of understanding and support in Cornwall. We want to do it for all those hiding in their homes unable to access support because they are too scared to tell anyone!!!

So you are now welcome to pass on what I say and tell others and share my blog and eventually I may try to go to the Media.

If it means one person thinks about and revised their attitude then it is worth it.

Saturday, 16 February 2008

My results - Basically I drink too much!!

Something I was already well very aware of - but it seems now I have no choice now but to do something about it?
I have not been well for the past year or more both physically or mentally. My behavior at times has been erratic, my memory much worse than can be explained by age and I have constant bouts of vomiting and other stomach problems.

I did put this down to trauma after my horse riding accident but it seems that HIV may have been slowly damaging my brain and my memory - It does 'silently;' do this to some infected people. I have to have a MIR and loads of other tests to find out.

Left untreated, in some people attacks the brain and effects memory, mood and emotions rather than they get ill with infections. I am now having tests for this but am pretty sure that from the way I have been I already - and other neurological symptoms - I have had some brain damage. So is my HIV consultant. I also drink too much which can escalate such brain damage from HIV, in a way it does not if you do not drink more than moderatly.

But my 'mental' symptoms may have been escalated by the amount I drink!!!

My alcohol consumption may not have been a real problem - at least not as yet - to someone without HIV, but HIV itself reduces your liver function and alongside too much alcohol this would escalate any mood changes and memory and behaviour etc

But the trouble is having HIV makes me even LESS WANT TO BOTHER TO DO SOMETHING ABOUT IT.

Pleasures in life are so few anyway, life is short and now could be a lot shorter than I ever expected and I love my glasses of red wine.

On the 13th Feb 08 we went to the clinic for our appointments - for Barry to get the OK to start on antiretrovirals and me to get my results and see if I have to start them too.

Barry was told he was well enough to start - thank goodness for that as he has been a lot iller than I am or have yet been.

But thankfully his PCP Pneumonia is now under control although he will have to take medication to prevent it getting a hold again for the rest of his life....................

......................and surprisingly his liver and kidney function has gone very quickly back to normal since he stopped the Septrim medication that so disagreed with him - and so we saw the pharmacist on Wednesday to get the HIV meds and a run down on what side effects to look out for that could be dangerous to him - a blistering rash seems to be the one that we would need to call an ambulance for - but it seems he is alright as he has now taken them for three days with no bad side effects at all - so far!

As to my results

They were quite strange really........ but explained when you consider that I drink too much and have HIV.

As from what I have read I have a very low virus load for someone who has had HIV for a few years without knowing it, I only have a virus load/count of 264 - which is very good .

But my CD4 count is pretty low, too low, which is bad.
'Normal' CD4 is between 500 and 1500

Mine is not as low as Barry's which was only 9 when he was first tested, but he had a virus load of 55,000 + and was very ill, almost at deaths door!!!!!! with PCP pneumonia, so that was understandable, as when you are that ill your TCell count will be very low.

So my virus load is quite good - only 264 - very low - which is good - for untreated HIV.

But my CD4 count ( my immune system Tcells) is only 289, I am only 89 off of being defined as having AIDS and 350 is the level they recommend in the UK you start HIV drugs!! So as I am not ill - well not with any opportunistic infections anyway - it should be much better than this!

So it looks like my immune system is 'buggered' and because I have a low HIV virus load it may not all be explained by HIV??!!! However to fight HIV it helps to start with a good immune system that has not been compromised with other factors - and HIV and drinking too much are a BAD combination.
Drinking in moderation is fine when you have HIV, but not over 'moderation'.

So I am not starting HIV meds yet partly as it may be that I have other reasons - apart from HIV or together with it - why my CD4 count is so low.

And one obvious one is my liver - and it seems this is a problem.

I have been aware I have knocked my liver for the last 8 years, but had no idea my drinking red wine of an evening would do this much damage!!!
All I can say is if you drink regularly - get your liver function checked!!!

- I have been drinking this for no more than 8 years because I really was a non-drinker except very occasionally on social occasions before this. YES truly I was almost teetotal until my 30s !!! I never drank at all though out my adolescence and through to my early 30s only on social occasions and then only very moderately - after this I drank at most one weak beer on an evening very occasionally, but usually only lemonade or coke in pubs, at most one or two beers - only since I married Barry did I then start to have a regular social drink at a pub.

Because he loves his real ale and I wanted to keep him company. To be honest he WAS a drinker when I met him, - but not now - how far the tables have turned!!!!!

Stopped drinking again altogether when pregnant and when I had PNI and for some years afterwards I did not drink at all. But about 8 years ago I started to drink regularly for the first time in my life ( around 47/48 years old) and far too heavily.

For many reasons and mostly loneliness when he was away at sea - no excuse I know!!!

Started with a glass or two of wine while away the long boring evenings when Barry was at sea, and it escalated almost without my realising how much - and now I just drink far too much and on most days. I do not get drunk rarely at all now as I am so used to it.

Now the test results showed that yes I have indeed knocked my liver.

I do not really understand the results as yet - but an 'acceptable' liver function reading at the lowest level would be 46 and mine is 36!!! Not as bad as it could be at all for someone who drinks almost every day, but still not very good when you have HIV!

Whatever else it means - it means I HAVE to stop drinking if I am to stay alive with HIV as long as possible as most HIV medication is toxic to the liver to some degree, so it is best to start with a good liver function. I am not.

Social or moderate drinking is fine with HIV, but apparently this means one or two glasses an evening, not the level I do it .

So it seems I have to see a liver and stomach specialist before I can start on HIV meds. ( as I do have distressing stomach problems that have got worse recently and apparently this could be related to my liver function)

I also have to have a MIR scan due to memory loss and other brain damage - which apparently is real and not imagined - and a Ophthalmologist specialist for my eyes.

I have to have all this before I go on HIV medication.

If you have lowered liver function they have to be VERY careful about the HIV meds you take.

I have had a chest X ray on Wednesday to see how my lungs are doing. My bloods will be monitored regularly and unless they get dangerously low, I will not go on the meds until I have had this barrage of tests.

This does suit me anyway as I do not want to go on them until Barry is settled into a routine with them as it is better one at a time rather than both together

but it is very worrying that I have to have all theses tests, and mostly because I drink too much !!!

One thing you do get when you have HIV is a thorough medical overhaul, they look into everything in the finest detail and you get appointments with specialists for anything that shows up and very quickly - when without HIV you may have to wait months to see the same specialist unless you are private.

Not sure what I think about this as yet??? Not sure that just because you have HIV you should have access to medical treatment more promptly than most other people who are NHS and not private do? I will have to consider this situation further!!!!!

All the damage to my body known so far i.e memory, immune system, stomach, liver and eyes could be drinking or could be HIV, but probably the combination of both.

- do not know yet but they need to find out before I start HIV treatment apparently, as it could very well be either.

I do wonder what they would have thought about my low immune results if I had not been honest and told them I felt I drink too much for my health???? How many would have been a honest as me I wonder?

As I am not a drunk in that I am rarely fall down drunk - well actually never, I have never in my life been drunk in any way that I forgot what I did, was not in control and not able to look after myself and function -

It is not often can anyone tell I have had a drink at all unless they have seen me drink it. Everyone I know well will confirm this. But just the same I know I drink too much wine, and have done for about 8 years!!!

I guess I come under the category of 'middle class wine drinker at home' there are thousands of us and few realise until the chips are down that this nice comforting habit could be so compromising their health - and their liver - to the degree it actually is

Not until the 'writing is on the wall' as it is now for me.

But then how many ' middle class home wine drinkers' will find they are HIV positive?????

If there are any others out there in my position reading this - contact me, I could do with some mutual support!

I now use alcohol as part of my daily routine and daily life and I know it is far more than I should for my health, and have developed a tolerance to alcohol so I can drink a lot with no huge discernible effect.

But I never binge drink, rarely if ever, get drunk - except deliberately I have a few 'over the top' when upset to drown it and that is not often theses days.

How many others have livers though regular evening wine drinking that are functioning less well than they should be? I guess loads of people who just do not suspect it has done them any harm!

The trouble is with HIV, you have no where to hide and you get away with absolutely nothing. Everything about your lifestyle and habits are in the spotlight.

From your sexual encounters, yes you are asked abot this a lot .............

( in my case this is not of any interest as I only have sexual encounters with one person for more than 20 years and at the moment even that is not often - and with HIV I will never risk having sex with anyone else for the rest of my life!!!!)

Drinking, eating, smoking and drug taking habits........ I have no eating disorders, I did smoke rarely but gave it up for over 10 years, unfortunatly have started agian last year, hope to stop agian soon.

But what I really object to is I keep getting asked if I take any drugs - I don't - none at all, not even anti-depressents etc - how many times do I have to say this? - why do they have to keep asking!! Is there an assumption that if you are HIV positive you have to be taking drugs of some sort or another???

(I do not take any drugs - either prescription or otherwise so this is not of any interest)

but the one thing I do is drink too much.

But if you want to survive HIV as long as possible you can hide nothing - you have to be honest about everything whatever it is!!

Suddenly you are stripped to the right to decide what you do with your body/health and the right to privacy about it!!!

This is all why for me that day I got my results was a 'sobering' day!!

Friday, 15 February 2008

We just want to have fun!

Barry felt pretty well today considering and had quite a good day today. He is tolerating his antivirals really well. He actually has few side effects that we can see, no nausea, no mental health side effects, no nightmares or mood alterations. He does have one, sleep disturbance. Usually he sleeps well but now can only sleep in hour blocks, asleep for an hour up for an hour - but this is a minor difficulty compared to what he could be feeling.
I just hope that I tolerate them as well as him when my turn comes to start on them in a week or two.

And I felt good today I did not feel ill today as I have most other days. I felt quite well and the sun was shining.

In a funny way it is dawning on us that as long as the antiretrovirals work for Barry and he snatches back a few years, that the struggle we have always felt to work, make a nice home, struggle to earn enough money, be good parents and generally not live for the day but live for the future, that may well never arrive, and to live for our commitments has ended. And surprisingly - it is such a bloody relief!!!

True we will now never achieve the things we were striving for. Our house - a 20 year project - will never be truly finished as it still needed thousands spent to get to that point, and we really never had the money it needs. We will never have the letting units we planned to build in the fields, and we may even have to sell and downsize to a home we do not love as much as this one. It is a lovely house, so unusual and on a lovely spot.

We could never afford a home like this again.

But suddenly the urgency and necessity to get up every morning and continuously work so hard and worry about doing enough things to get to that imaginary place in the future - that actually I now realise may never have happened - is over.

All we have to do is treat every day as a new one and just do the things we have to do to keep us both and the animals fed and cared for and us as healthy as we can. And we have time to talk, which we are and a lot and in a way that we have not for years, not really since we were first friends.

I have also realised that I have what I always wanted - Barry home with me and not EVER going back to sea. I do not think I can ever really explain the true extent of how much I really hated him working away at sea!!!!!

And how angry and ill it often made me to know that the only time we ever had together was spent in 6 to 8 week blocks and that he was away more than he was home. So too frequently it was not possible to enjoy the brief time we had together. It would take at least two weeks every time he came home for us to get used to each other again, to get used to the intimacy and living together.

Barry would also be so tired and so stressed when he came home it would take him even longer to relax and then there was always the demands of the jobs banked up waiting for him to get home. The maintenance of the house and all the other things to fit in he could not do when he was away at sea .

So as soon as he relaxed enough to start to catch up, he would be stressed due to knowing he only had a few weeks to do it all ................ and I would become stressed irritable and angry that he was yet again going back to sea, even though he knew how much I did not want him to - we just never had time for any fun, and especially no time to enjoy each other.

Just when we got into a routine and started to love each other again and get used to each other and enjoy each others company, it would be time for him to start preparing to go back to sea!!!

It was an awful way to live, but Barry was too scared to give it up as it was the only thing he knows as a job - he has done it for over 30 years and a few years before I met him.

Of course it is so very sad that the reason he will now always be with me is he has HIV and in fact AIDs and I am HIV positive. But other men he has worked with over the years have died of heart attacks, cancer and thrombosis etc before they ever even made retirement, so I half expected that anyway, I never really expected to have any time together, so if I look at it another way we now have time together we never though we would have.

And we do get on well - even now, especially now - and despite this dreadful virus we are actually enjoying each others company - a lot - and the fact he is not going anywhere away from me anymore has really made the time we are spending together even better- and we are starting to be determined now to enjoy what we have.

Today it occurred to Barry to go to Glastonbury this year. He was listening to the radio and it said this year may be the last Glastonbury!! The end of an era that started in the 60s/70s and a era that was so part of our good memories of youth.

We may not get there, and we would need to get tickets and that can be difficult.

However it is the thought that counts. The thought that we now have time to do things that are not work, money, child, animals and house related. That basically our time is now ours to do as we please, and together. This is a whole different ball game for us, a whole different perspective on life.

So we will try to go to Glastonbury if Barry is well enough - as it may be the last Glastonbury so it would be good to go as we both went to the first as since we have been 'respectable' working people we somehow, for the last 20 or more years, have never found the time for things like Glastonbury.... or for any fun just for the two of us...... but why not now? and we can go as disabled people

I am already on DLA due to my accident and Barry has applied and his consultant is 'fast tracking ' it because he has been so ill. And as disabled people we will have better conditions. i.e loos that work and a dry place to camp, only disabled people and the celbs get this at Glastonbury !!

I think we are at last finding some positives about this awful thing that has befallen us. There is always positives to everything only it sometimes takes time to see them and you may never see them if you do not want to.

I am still not sure I really want to see the positives of having HIV, but I am beginning to see a glimmer anyway. The sun may be rising again.

I think the turning point came on Valentines day, or rather the early hours of Valentine's day. I freaked out completely - I was a raving banshee for a couple of hours - but we started talking and to realise that our relationship had changed. We have always loved each other, always liked each other but too often other considerations got in the way.
It seems to have become something much more honest and 'now' together. We are living for now not for what may not ever be, that means we now have time for each other.

I will write about Valentines day and why it changed things for us when I can

Thursday, 14 February 2008

Caja fine today and off to London

Sorry about my vast ramblings in my last post about Caja and my guilt. But I felt I may as well get it off my chest now I am writing what I feel in this blog - might as well say it all, there is no point in not anymore

But having needed to offload in my last post about my regrets about what we put Caja though when I had my accident and Barry did not stay away from sea to look after me, my selfishness then which let to such problems between Caja and I. And now my guilt that she is having to face again such a terrible thing in her yet very young life.

But I am happy to report that Caja has phoned in on her way to catch her train to London and today she is fine!

She seems no longer angry and said 'sorry mum' which is about as good as it gets as an apology for anything! If she says this I know she really means it and she was very chatty and OK with me on the phone. She does seem to recover quickly from emotional stuff theses days.

She is off to London to combine a trip to a chefs exhibition in London on Sunday with her college course, with visits to our relatives which we are close enough to but do not see often enough due to them being in London and we in Cornwall.

The rest of her course are travelling up on saturday but she has chosen to go a few days early and stay with my sister and visit my elder brother John, his children, her cousins, who are now in their 30s. One is the respiratory doctor at the Brompton who has been so helpful to us when Barry was in hospital with his HIV infections.

Then on Saturday she is travelling to Braintree Essex on the train to see her other 4 cousins, my brother Martins children who range from 11 to 17.

She is then coming back on Saturday night to join her college group at the hotel for the event .

This seems a very tight schedule and a lot to pack in and of course I am now worrying it will be too much for her as she gets tired quickly.

But she was very happy excited when she phoned. She likes travelling, especially by train so I am sure everything will go well and my brothers and sister will look after her

Can't Support Caja - Haven't been able to for years, can't at all now - its so sad

This is a long post - only read if you have bags of time :-(

My lovely Caja is very angry with us now - and who could blame her?

She has not said this directly but every time she has been here the last few times she has got very angry and grumpy, especially with me.

And she is bound to be angry
Her parents have done this to her, and something has been done to her and something quite drastic for someone of her age.

I think it is now sinking in what this actually means and what it means to her and her future life.
She is now realizing that just because Barry is out of hospital he is far from well and she is upset about this but she does not seem to have any understanding that I too am unwell even though she knows I am HIV too - and so the brunt of her anger is at me.

Tuesday the day before we went for my results and Barry's antivirals she came round and was very picky with me, kept asking me to solve/find answers about things for her re where she goes to college next year and what course she does, but when I tried everything I said was wrong and just made her more tearful and angry. I really tried to help her think of solutions and what she should do as she presented me with her dilemmas re the courses, the subjects where to actually go to an access course, but I was feeling very scared about the hospital the next day, so i tried but kept saying the wrong thing and she got angrier and angrier and more upset too!

She then asked me why I did not get a full time job again if Barry can not work, and I earn the money now that he can not.?

She has never understood anyway about what my accident in 2003 did to me. Despite my being unable to walk at all for nearly 9 months, except to get to the toilet and back which is en suite so just a couple of feet and being in a wheelchair for a while and wearing a fixator and in and out of hospital with infections which brought my health right down for a long time and also made me phobic for a while which has never really gone and is now getting worse again due to my fears of HIV

- this has always been some of the difficulty between us as after the accident, I could no longer do the things I used to for a long time and she did not understand this and refused to help or at least not make work for me I could not do.

It was not her fault at all
- She just wanted me to be a mum in all the ways I had before the accident I guess and just could not accept I could not be. And have never really been able to be since.

Or if I could not be a mum she needed her dad at home or another relative that loves her as much as we do. But Barry would never consider leaving the sea and we had Caja as older parents and live on a smallholding so there was no relatives to care for her. I had two good friends Gelly and Sandy who did care for Caja and also helped with the dogs and cats, but she needed her mum or dad not an invalid mum who wanted Caja to care for her.

On my part I felt that because she was by then 14/15 and could have done stuff round the house to help me, that because she did nothing and in fact was very messy and dirty around the house at that time and my house is very important to me - I felt she did not care about me, I so wanted her to care about me, always have.
I felt she was all I had as any one who was close to me Barry just went back to sea leaving me disabled and unable to cope. She was the only physical and emotional support I had in my home and I wanted her support . it was too much to expect or put on a 14 year old and I did and from then on continued to expect her to care for me rather than the other way around.
I love her and care for her and want to support her but can not in the way she wants me too. I can be her mum and a friend, listen to her, try to help her work things out. But I can not run after her physically, cook all her meals when here, not be upset and emotional right now - which she hates and gets angry with me whenever I am emotional at all. And since the accident it is impossible for me not to be - and even harder now I have HIV.
- this was what was so wrong and it led to her leaving home eventually

..........of course I had failed her - she was too young and she needed a mum - even at 18 now she needs and mum and she does not have one really, well not the mum she wants to have.

It was not all my fault - Barry should never have gone back to sea leaving me in that state to have to try to cope.

Now my ankle is a bit better - it will never be fully better as it has been fused so I have no ankle joint at all. But the fusion means I am out of pain and can walk fairly well with a stick - so she can not see why I can not now work full time?

(a picture of me just after the fusion in my wheelchair)

She takes no account of the fact my ankle may be better but I still have some mobility problems - can't go up and down slopes, can only do stares one at a time and slowly, over overbalance and trip often.
And that I am now and HIV positive and in a bad way mentally and feeling quite ill physically. I believe she feels that I am being lazy not to now get a job now Barry can not.

The reason she wants me to get a job and why she seemed to be so angry with me is she is realizing that her plans to relocate to Plymouth in September and go on the access course in Plymouth for the degree she wants to do may not be now possible due to money. As Barry can't any longer earn she feels that I should I guess, so she can still go.

She could do an access course down the road here ( Cornwall College, Camborne ) that would qualify her for the degree and once she is on the degree she can get a student loan and a grant to go to Plymouth in her own right as she will be the 20 with two unemployed HIV parents and in Higher not further Education. But she does not want to do the local access course as its main subject is sociology which she does not like but the one in Plymouth is English Lit which she does.

But the access course is classed as further education and she can not get a grant for it so the only way she can go on it is to live with us as we can not afford separate accommodation for her, especially in Plymouth.

In fact at the moment as it is we are paying her rent £260 a month to live independently only 5 miles down the road from us and we are also giving her extra money when we can, paying for her mobile, her car tax and insurance and often her petrol.

And come June we can not even do this so she will have to move back home or somehow pay for herself and she can not work enough to pay for herself if she is to be on a full time access course .
We have said that if she wants to go to Plymouth if she lives with us and travels there - about 2 hours each way - we can just about scrape the money for a train season ticket - but she wants to live in Plymouth!!! And we just can not afford this now.

So she is very angry with us and me especially as all her plans are tuning to dust

And why should she not have theses plans?
Most parents with the income we have had support their children through Uni. She may be doing it in a more roundabout way by going on an access course but she is still doing it to go to Uni.

Every time she has come round the last three times she gets tearful and angry at me - and nothing I say helps, it just makes her more angry.
I understand her anger totally and she has a right to be angry, but I am not able to support her right now at all, and this makes me so sad and angry myself with the situation.

It is difficult for Caja if she is angry as you can not ask her to recognise/analyse/articulate what she is angry about which right now has to be the whole HIV situation.

If I - or Barry - presses her, she clams up and if you push it she get more angry and theses days usually walks out. Also when she clams up it has the effect that I get frustrated as I am someone who can cope with shouting and anger much better than silence and sulks. I then get into a state and angry as she will then not share anything or even talk to me further and in the past I have I admit tried to 'bully' her into opening up. Which never works.

It used to result in a child who felt bullied and more and more angry and me getting into a terrible state - and often her too, and theses days she just leaves . In the past we have both got violent this was between her being 14 and 17.
When we got like this towards each other I have never hit her exactly but I have pulled her out of bed when in an argument about her not getting up for college and dragged her outside the front door another time when she threatened to leave and she has punched a hole through her wardrobe door and damaged other things in anger while we were in a state with each other. She once shook a bottle of red wine I had had only a small glass out of, so it was a lot of liquid, all over the kitchen and all over me. We have basically had some BIG fights since my accident and I now regret them all hugely.
I doubt they will ever happen again - but I wish they never had at all.
Although I would never bully/push her to tell me what is wrong and what she is angry with now as I simply have no desire to and do not have the emotional energy to try, but I so wish it had never happened ever

At this terrible time I want to say to her:

I understand you are angry and you have a right to be angry as this is a terrible thing Barry and I have inflicted on you even though it was not intentional - it is still terrible for you'


'I am sure you are angry with us and the whole situation and what it may mean for you'

.....but can not as if I try she would just walk out, get in her car and go back to her single student room.

However I must admit that last night I did not try, I made no effort to support her, I felt I could not support anyone and especially someone so angry with me when I felt vulnerable and shook up.

I was in a terrible state after the hospital and Bary was exhausted and lying on the sofa, feeling relaly bushed.
She came in already angry and asked what there was to eat. We told her where a ready meal was and asked her if she could do it for both her and Barry as I felt sick. But she did not want this - she wanted me to be her mum and cook for her.
I have hardly ever in the past used convenience meals, I always cook from scratch and have done all her life and that is what she wants me to do when she comes over.............
and why not she is still my daughter and she feel very distraught herself and needs also to feel looked after.
But last night we could not even look after ourselves. Still can't today.

She still wanted me to cook for her even though I said I was not able to and when she persisted I am afraid I lost it and shouted at her, said that I was in a state and just could not and 'do it yourself' After all she is a trained chief and working as a chief so cooking a ready meal or certainly a meal from scratch is nothing to her.

But she threw down the packets I had given her and stormed out and drove away!!

I feel I have really let her down in every way, and not just over this but for many years - in fact since my accident. But I cant be her mum right now, well not in the way she wants me to be, not at all
And she needs a mum especially at the moment.
It is all so sad

Wednesday, 13 February 2008

My situation

It seems that I am on the edge of needing to take the HIV antiviral medication - but do not have to take it yet if I do not want to.

They realise I do not want to take them until I have Barry stabilised and in view of my test results can hold off for a while until he has started to take them and hopefully is feeling better.

My results were that I have a very low virus load - I think - considering I have been infected almost as long as Barry ( amount of HIV virus in my blood) his are 55,000+ mine are only 264, which means that for now my immune system is coping with the virus .

But there are signs that this will not be for much longer
As my Tcell/CD4 count is only 289 - which is loads better than Barry's as his is only 9!!

Normal CD4 counts in adults range from 500 to 1,500 cells per cubic millimeter of blood.

But the level that they consider you to have AIDs is 200 and the level that they usually feel you need to start antiretrovirals is in the UK between 350 and 250 - I am only on the lower edge of this!!

My T cell/CD4 count has to be juggled with my virus load so as my virus count is pretty low for untreated HIV and my CD4 count is not critical and I am not ill like Barry, I do not have to start HIV therapy right now if I do not want to - which I don't

But it is only a matter of a short time.

It has been a very 'sobering' day - in more ways than one as there were other results of the comprehensive tests they do when you have HIV that for me were not good. In some ways some of my test results were worse that Barry's !!

I will write about when I can and when I feel able . This may be later or it may be in a few days - not sure as yet.

Today - The Good News

It is hard for me to say much about our hospital visit today .

It was not bad news really, but I am just so upset by the reality of it all so will try to add more at a later date.
Barry is taking it very well- he is also coping with the change this has all brought to our relationship - and this is MASSIVE!! will write about this too when I can

But the good news is Barry was given the antiretoviral drugs and starts to take them tonight!! As he is now well enough to start - I will write more about this when I can

Today is Our BIG Day

This morning we both go to the HIV clinic to find out if Barry is well enough to start HIV treatment and to see if I need to take antiretrovirals as yet!

This makes it a huge day - and VERY scary day for both of us.

Our hopes for Barry is he can start the treatment today - as without this his immune system will not recover ( his CD4 count will not go up and his HIV viral load will not go down) This is his only hope of living a lot longer and not dying from the next opportunistic infection that comes along - Keep your fingers crossed he can start today!!!

For me what I hope is...........
That I do not have to start HIV treatment yet. I have not had any infections like Barry and although I am worried about my memory, eyesight, stomach pains and tingling in my hands, all of which could be HIV or could not ..............

But I hope not and hope my CD4 count is good and viral load low enough for me not to have to start straight away.

I feel I need to get Barry over the initial few weeks - at least - of taking them as he is the one who is ill right now and I need to be OK to look after him.

Then once he is settled on them and feeling better and responding to them I will consider taking them myself. As by then he may be feeling well enough to look after me during the first few weeks of therapy. As the first few weeks do have side effects for everyone and it would be better if it was only one person going through this at a time not both of us.

With the modern HIV therapy as far as I can work out the side effects are mostly mental health based i.e vivid disturbing nightmares, euphoria and depression, moods swings, unpredictable behavior and it says that EVERYONE gets this to some degree.

In a way this may be OK for Barry as he does have good mental health and always has, so I think he will cope better than me.

Even now when he is so ill, now he has made up his mind to fight it and live as long as he can he is coping really well - and much better than me. He is getting up every morning and doing a few things, the stuff he can manage, and is not at all depressed now. Just concerned with getting well and making the most of life.

But I am not coping mentally well at all and I fear hugely what will happen if I am put on drugs that have adverse mental health effects.

Will write what happens when we get back later.
Dead scared right now!!!!!!!

Bloody Hard Disk Failed

Just to add to my problems a few days ago the hard disk I used to store all mail - going back 10 years of more - for the PNI ORG UK charity failed completely. It had some of my mail on it but my main concern is the charity data which is a massive loss!!

This is why I have not written for a day or two, I was trying to sort out my PC as its crash corrupted my OS too

It is my fault as at a normal time I would have realized and backed up ail the data on it . But since this HIV thing with Barry and I, I have not been functioning properly or using my PC for anything but updating my blog and the basics of what I have to do.

So my PC kept reporting hard disk failure and I ignored it as any other disk but the one I use for PNI data would not really have mattered and I really could not be bothered to do anything about it right now!!

But I did back up some of the data on it a week or so ago but never finished it as I was really in too much of a sate to remember to do it. So at the end of last week the disk I hold a lot of the PNI stuff just ceased to work - it is terminal, I am good at getting lost data back but this disk was an old one - at least 7 years old that I have always held PNI stuff on and it has had its chips!! I knew it was old and I should replace it but it was where the PNI data was so I just never got round to it. Anyway this means I have lost even moderators details - I have the trustees as their details are on the charities database anyway and also stored elsewhere.

I do have some of the stuff from the disk backed up - but older stuff I did not get around to the newer.

So I have located a hard disk failure data recovery firm who I have to post the disk off to and they assure me that will be able to get most of what was on it back. This will cost about £200 and take about 10 to 28 days. Which I will pay and it is a lot less than most others who wanted £350 to £900 which I could never afford and the charity certainly could not.

I feel it is my fault for not backing it up regularly In the meantime I will not have access to many of the contacts and addresses I once had. I feel I have to get that data back as it was years of emails, posts and information about PNI that I felt was so valuable.

But it also lost recent requests for support from PNI sufferers and it is my worry that they are out there desperately waiting for a response and will feel we have let them down as none will come because I do not have their email to reply to and sort out email support for them.

The other data is - years of women's stories with PNI and what women who actually suffer this awful thing feel honestly about it and their experiences and symptoms - I have never really known what to do with it but always felt that one day I would find a way to use it for the benefit of those with PNI and research into finding a way to alleviate how women suffer with PNI and to raise awareness.

So pretty gutted that this has happened right now - it was the last thing I needed. But hard disks are only guaranteed for 2 or 3 years and this one was over 5 years old - probably older - so I should have backed it up and bought a new one I am just about to post it off to this data retrieval company and they have given me a special price due to up being a charity as it usually costs much more for businesses

Thursday, 7 February 2008

Got Through the Night

Well Barry got through the night without any adverse reaction as yet to his new drugs.

Thank god

If he can just take theses and keep them down, there is much more hope that he will get well enough to take the anti-retros next week

Wednesday, 6 February 2008

Good News for Barry!!

I have just learnt that Cannabis is used by some AIDs sufferers to alleviate symptoms, including drug induced nausea and the nausea those with symptoms caused by the HIV virus itself can cause

Apparently there are in some countries some medications derived from Cannabis, such as aerosol sprays and tablets - licenced to prescribe for AIDs sufferers.
I do not know about the UK, but I doubt they are here.

However Barry may be pleased to learn this as a long time ago he used to enjoy the occasional smoke!! But that was a long time ago.

He had to give it up when he became a responsible worker/marine engineer as in his job he has long been random drug and alcohol tested. It was instant dismissal if it had been found he had ever had a sniff across the room of it!!!

But he may be pleased to hear this - as what has he to lose now?? He will never be going back to his job at sea and I doubt will now ever work again at all and I would not think they will prosecute him in his state if he used it now and then - just his own use - if it alleviates some of the horrible symptoms he is having, so why not?

He could never smoke it again as his chest would never allow it. However if it ever comes to it i.e that nothing else works to make him feel better...
I am sure there are other ways he can find to take it.
It would not work for me as I never liked it at all, but it may be a comfort to him.

Good to find some plus sides to this situation.

He will be pleased
But perhaps not - I do not want the drug squad round to add to my problems!!!

Drugs, drugs and more drugs for Barry!!

This morning Barry went back to the HIV clinic because he can not take the Seprtim for his PCP infection.

It is not good news as they did a liver function and kidney function test and the Septrim really did not agree with him and has lowered both. I do not know if this is why he was so sick on it, but his liver and kidney function has been affected, and the Septrum was not doing anything for the PCP.

So it will be even longer before he can go on antiretrovirals for HIV

This is really worrying for me as he has to be on them to fight HIV.

He is not well enough to take them as yet so now he has been put on another combination of drugs Primaquine: Clindamycin: and yet another anti nauseant Domperidone :

Our life from now on looks like it is going to be about drugs and nothing but the drugs - horrible!

But all we want is for him to get better from the PCP so he can start HIV therapy - this is actually his only hope of a few more years.

We were laughing that we have so many anti-emetics and anti nauseants' in the house, perhaps we shoud try to sell them on the black market to people like me who are emetophobic!!!

Just joking!!

And of course I will never lack for an anti-emetic for my emectophobia ( fear of vomiting) I have about 4 types to choose from and several packets of all of them!! It will take me years to get through this lot!!

World War Two Bombs

I have not posted today because yesterday and today have been eventful.

After I posted yesterday morning I went out to see my counsellor about a 40 minute drive away.
I was driving back from seeing my counsellor - at the counsellors I had a real panic attack for the first time in over 25 years, the emotional strain of all this is now catching up with me.

Anyway I had the radio tuned to Radio Cornwall
On the news was a report of a 2nd world was bomb being discovered in a street in Falmouth. the bomb squad had been called and the street evacuated. It was discovered in the attic of a house being renovated.

I had this brief thought as this news was being read out
'All it needs now for this street to be the street my daughter Caja lives in'

And then I thought do not be daft - of course it is not her road!!!! You are really being paranoid now!!!

I know it will be hard to believe but it was - she lives in Marlborough Rd in Falmouth and a friend of ours - a bloke who used to go to sea with Barry - with his family lives opposite her too!!

So here I was in a full blown panic attack with on the Radio the news my daughters street had been evacuated!!!!!

I know this will be hard to believe - but this was so!
Actually it turned out that only a few houses were evacuated and everyone was out in them anyway - but my daughters student house was one of them!!

I could not contact her until I got home as I had forgotten my mobile phone. So I drove home - threw up when I got home - due to the stress of my panic attack - and then called her.

She was fine, she had seen the bomb squad arriving as she left to go to college in the morning and really in her calm way had not really thought much about it.

Anyway she stayed with us last night, and not even due to this as they had been let back in the house by then but because the other students were having a bit of a 'Shrove Tuesday' party and making a noise in the kitchen next to her room and she was tired so came home to sleep.

But my feeling at the moment is

It can only happen to us!!!!!

Tuesday, 5 February 2008

Co - dependancy assumptions?

I am trying to analyse what is going wrong for us re the attitude towards our HIV and us as a couple re the HIV clinic I have began to make some conclusions.

I need to process this and come to some conclusions as to at is happening in order for our contact with the clinic to work for us - and it seems that it is very important for both our future health that it does.

I think the basis of the assumptions made is that Barry and I are co-dependant.

And anyone that actualy knows us will know that this is not the case.

It would have been almost impossible anyway to sustain a relationship for over 25 years that works so well and gives us both so much, on the basis of codependency, especially when we have had to be apart from each other and function as individuals for up to 7 months of every year in all the years we have known each other

Our relationship works BECAUSE we are not co-dependant and never have been.
It also works DISPITE the fact we are away from each other for so long not because of it
To help us you have to understand both.

No one we have talked to 'officially' re HIV has - so far. This has to change

But we are very much a couple and despite this we remain a couple that loves each other very much. And we do look out for each other.

This is not codependency, we compliment each other, we are friends as well as lovers and spouse and help each other out - but never without permission from the other.

I do stuff for Barry that he finds hard to do for himself and visa verse and because the things that we can or can not manage are different - our strengths and weaknesses are different ......
This works well for us and compliments us rather than taking any thing away from each other.

But theses people do not understand this, they do not know us at all. I hope they soon start to get it!

So far Barry has always seen them with me and visa versa at the HIV clinic for tests and treatment, they are assuming because I am talkative, loud and extrovert that I am not allowing him the space he needs to speak for himself.
They want him to have space away for me to 'engage' in his own treatment.
The trouble is as Barry said this morning, not in theses exact words but this is the gist of it.

They think I am going to be different when on my own, that I am being inhibited by you, but this is not so, I am like that, I am quiet, what they see is what they get and I can not be more proactive in my treatment. I have always been unsure ,shy and unassertive when it come to my health and I need you right now to fight with me for what I need.

I have to go out now - but will add to this later...
but this is the core what they just do not seem to be getting
And this has to change because our interactions at that clinic has to suit us if we are to be compliant to the medication.

Monday, 4 February 2008

Realisation - HIV changes everything

Barry is still being sick
Talked to the HIV clinic today and had realisation

I should have realised this before but with this HIV think we are on our own!!
We are no longer a couple in the way we were as we can no longer take responsibility for each other!!!

God that is so sad.

I can not support Barry and he can not support me - at least in terms of our treatment and how we cope with HIV.

They made it clear to me that information of how is or not coping with any drugs he is on for HIV can not come from me!!
It is me that has tried to get him help with this
But they can not talk to me - they can not advise him through me!! and the way I cope with being HIV is not Barry's concern right now as his only concern has to be to get better and I can not interfere with this as he is so sick - I do understand this but it is so very sad!!

Our health - or sickness -mental or physical - is each our own responsibility !!
This is a revelation to me.
As it has been combined really for so long - over 20 years!!!

I said when we married 'in sickness and health' and meant it totally and forever - but it seems that the rules of HIV confidentiality or even the 'rules' of being HIV changes all that - even your bloody marriage vows!!!

His sickness is no longer my concern, nor is mine his!!

I do look after myself in terms of my own health - if it was me who was this sick due to any medication I was given it would be me that would have contacted my consultant and told them the position and asked for a change of drugs, or other help .

But if it is Barry it is me that feels I have to do something for him and me that has been trying to get him some help with his intolerance to Septrim.
As always it has been me frantically trying to get some advice, and some help for him.

The nurse on the phone made it clear that if he needs some help it is him that has to ask for it - not me - but this is how it has been, always and of course long before HIV.

And with his vomiting with Seprum I have been trying to get help medically him. He does not want to talk to anyone but expects and asks me to contact people and try to get help for him.

Up to now we have been a couple, he looks after me in he ways I can not cope with and I look after him.
But in this one i.e his HIV and his medication he is on his own - as I am I

Bloody sad really.

I told the nurse he would not right now talk to her about how he feels, she said for now tell him to stop taking the Septrum until he comes to the clinic on Wednesday morning but basically what she was saying was that from now on it is down to him to tell them how any medication is affecting him - and ask for alternatives if he can not tolerate anything he is given - like he is not tolerating the Septrum.

That we need to seen individually and not as a couple!!!
So sad as it is - in terms of HIV - how we deal with is emotionally - and medication - we are both on our own from now on.

Even in terms of the support we need
HIV is drawing us apart - we cannot help each other.

I need emotional support he does not seem to need right now and he needs medical support I can not do for him.

He has to ask and get this support for himself
Something he has never done in terms of his health - or anything really!!

He has never learnt to be assertive when it comes to his own needs and especially health as he is so emotionally and other ways self sufficient that way - but with HIV and a seriously ill as he is you can not be self sufficient and he can not ask me to do it for him as they can not talk to me as his HIV is his own business - not mine even though I have been married to him for 21 years and known him for almost 30!!

A fucking sad illness HIV in more ways that you can realise until you have it

Group for women with HIV in Cornwall

Having spent many hours since I was diagnosed trying to find appropriate support for me - a 54 year old woman in a heterosexual relationship with HIV who lives in Cornwall

I have found there is NOTHING!!
That is right - NOTHING - Ziltch - Nill - totally NOTHING!!!

I have talked to Positively Women based in London, Terance Higgings Trust, and a few others who all say there is nothing for HIV positive women, specifically, who live in Cornwall nearer than Plymouth and that is only a group run by a general HIV support org.

I also spoke today to KPS (Kernow Positive Support - the only Cornish HIV support group who seem to be a caring organisation but who do not have anything specifically for women) who say while they have a few - about 10 I think? - women with HIV 'on their 'books' in Cornwall there is no specifically female HIV support group - and they only have one woman among them who is 'out' and willing to talk to others about HIV!!!
So it looks like my destiny is now to start one?

Women with HIV DO have different needs from men with HIV of any sexual orientation.

This is what I think and do believe is true

But in Cornwall it does not exist - yet.

I can not do it until Barry is out of the woods, but if he survives this I will and if he does not I will too - but I have to wait until his situation is resolved one way or another.

My fear is I do not have he energy right now and at my age and after initiating so many other support groups for other 'issues' both paid as a youth worker and voluntarily in my own time ..............

That I do not have the energy to start on yet another issue .
But it seems that if I am going to get the support I need for myself right now I have no alternative but to at least get the ball rolling.

If I do not have the energy to carry it forward maybe I can at least try to get it started?

I hope so .

Because it seems that women with HIV in Cornwall are in a desert in terms of peer support

Watch this space because I intended to do something about this

Sunday, 3 February 2008

Barry - I found something to stop his vomiting

The anti-emetic injection Barry had from the doctor did not work - he was still throwing up constantly all night.

He had nothing left to be sick on but feeling sick and reaching nothing is still unpleasant. He was not drinking much so I was also worried about that.

He was also left some Buccastem (prochlorperazine) by the doctor yesterday that did nothing either and we have already tried Maxilon ( Metoclopramide) but this did nothing also.

So this morning at early I took things into my own hands.

I remembered a drug I have taken in the past occasionally - I have taken it now and then since I was 13 - when I felt sick due to my food intolerance and when I was so sick in pregnancy with Caja I was allowed by my doctor to take Avomine ( Promethazine) an anti-histamine based solution that you can still buy over the counter for sea sickness and used to be used for pregnancy and post operative nausea. It is considered pretty safe and in fact it is considered safe enough to be in an over the counter medicine for ill babies called Medised. Promethazine is the sedative part of Medised but it also has the advantage that it stops sick babies and children from vomiting too.
I reckoned if it is OK for pregnant women and babies and it is still an 'over the counter' drug, it has to be OK for Barry to try.
I do not think it has been used for post operative nausea for some years and is not now prescribed for pregnancy unless as a last resort.

But 18/19 years ago my doctor said when I was pregnant that I could use it - at my own risk - as this was my choice as I could buy it over the counter, but did reassure me that there is no evidence that it causes problems to the fetus and it has been used for many years in the past for pregnancy sickness. And in fact my mother took it with her last child Chantal and she is fine ( she is now 40 years old so we know it did not affect her)

So I looked it up in the BNF which I have a membership of to make sure there were no interactions with the drugs he is on, but just to check I rang Kernow Doc just to make sure it was OK to try it?

They said yes there was no reason not to try it, they said if he other things had not it was doubtful this would, but still worth a try, at this stage anything is worth a try - so I gave him one this morning, not an old packet I got a new supply.

And it worked!!! Thank goodness.
Within 20 minutes he said he no longer felt sick!

He felt very drowsy and tired but that is OK as he has not slept much at all for days, and he has since he took just one tablet not felt sick and nor thrown up has been able to take his other drugs for his infection and is now sleeping peacefully.

Thank goodness I have been able to help him.

It was horrible seeing Barry who has hardly ever thrown up in his life being so ill - he has only been sick twice before in the 30 years I have known him and this was for really bad food poisoning. He used to have a constitution of an ox.

Being ill and vomiting as well is the worse and it was horrible to see him like this

I only hope that if I ever get ill like him and have to take the same medication that is making him so sick that Promethazine works for me too?

Football league for the 100+

After reading my last post a friend said he was thinking of starting a football league for the over 100s!

Barry said that if the predictions for his longevity - i.e that he will live till he is 106 - come true, he will ditch the habits of a lifetime and start to play football! We were in fits again. Laughter does really help at a time like this.

Maybe we can make it a football league for those over 100 that have HIV?

Saturday, 2 February 2008

Barry to live till 106 - HIV funny moments

This HIV journey has not been without its funny moments - I am sure there will be more moments and one just happened .

I will add to them as they come up. We have had a laugh about them but at the same time the insensitive attitude of some of those who are treating us , has been an insult too!!!

Today 2nd Feb 08 - life expectancy with HIV

Barry is home from hospital but is so sick ( vomiting ) I think that it is dangerous for him - he is already so low so danger of dehydration and other problems - and also means he can not keep his medication for PCP down and really needs to if he is to recover from this and live with HIV for a few years.

So I had to call out Kernow Doc ( Cornwall's out of hours doctor service) to try to get something to stop him vomiting - at least over the weekend before we can access his doctor on monday.

A very 'upbeat' extrovert young doctor came in the Kernow doc van - it was on the one hand refreshing to have a doctor that did not appear to see coming out on a saturday as a pain in the arse and who seemed so unfased by HIV.
BUT ........................................................

He was too bloody upbeat.

Barry really is very ill.
He gave Barry an injection in his bum that shoud stop him vomiting - we have to wait an hour or so now to see if it has worked -

But he also had on his notes ( because they were left behind and I read them ) to 'give wife advice on how to cope with HIV/AIDS situation'.

So he asked me how I felt and what were my concerns .
I said I am worried he will die with this infection - and we need him to get better from this infection so we can tie up our affairs with our daughter etc.

He was good from a purely medical point of view as he realised Barry did need some help right now and he gave Barry the injection he needs to try to help the vomiting

But - A lot of use he was to reassure me!

He said 'he ( Barry ) could live for 50 years yet' and left !!!!!

Barry and I just curled up with laughter after he left because Barry is at the moment 56 years old!!! This emergency doctor obliviously had not read his notes and even bothered to take in how old we both now are!!!!

So we were in fits of laughter as if we believed what he said and took comfort in it we would believe that Barry's life expectancy with HIV and a low CD4 count of 9 is far more than the average person.

As Barry at 56 now, if he lived another 50 years would be 106!!!!!

How likely is that????

The other funny moment was at the HIV clinic last week.
Barry has muscle waisting and is very underweight.
But they assured him that with HIV antiviral medication he could be fit and active and playing football at weekends!!!

We were gobsmacked!! To think that HIV meds could have Barry playing football!!!!! They must be truly miracle drugs!!
They will be telling me I will play football next!!!!!

As Barry has NEVER played football, NEVER wanted to and NEVER could as his eye/ball coordination is non existent and any way he has NEVER has one iota of interest in Football or in fact any other 'male sport'

The assumption was I suppose that 'all men love these sports' just because they are men?
............and the ultimate of living with HIV would be able to play them again?

Total sexiest prejudice really- total crap - and trying to pull the wool over our eyes!! We keep being treated as if we are daft!!

We will be lucky to be able to ever live even a partially 'normal ' life for us ever again and fucking football has never been part of our life anyway- perhaps they should have found out first if it was before banding around such stupid statements

And also neither of us ever want to live to 106 or expect to - with or without HIV.

Our concerns right now are much more serious than stupidities such as the ability to play football or to live to 106!!!!!