Thursday, 24 January 2008

The Dairy - of our HIV Diagnosis

I started writing this in my dairy, before I was certain Barry was ill - I knew he was but as he could not see it and I did not know for sure I just wrote my thoughts in this dairy. I wrote it as I write a lot in my dairy. I always address it to who it is aboout , myself Barry or Caja.  I wrote most of what I went through when I had Post Natal Illness in my Dairy, http://www.pni.org.uk  but have never shared it.

Not even with Caja, even though she is now an adult and even though I addressed a lot to her even when she was a little baby. I never intened to share it with her then, nor Barry when I wrote this below. It was a record for me and perhaps to be shared later, if it is appropriate - as I am with this now.

This I am sharing because I now know I was right and Barry has HIV and so do I!

Always trust your instincts - you know yourself and your loved ones more than anyone else.

___________________________________________________

Friday, 16 February 2007

Dear Barry

I can’t say this to you right now – and I so hope I am wrong……….
But I think you are dying – at least you are very ill.


I love you so much – there is no unfinished business between us – you have always been my rock and I love you just more than I have ever been able to tell you.

Why do I think you are dying?

Because I have seen you wasting away – losing weight – sleeping whenever you have a spare moment to sleep –sweating in your sleep, no energy, no interest in sex, or even life really, looking so very ill……..

And yet your spirit is so full of life that you do not even get a sense of the fact you are dying or even that you are so ill. And that you have been for a long time.

You have never been aware of your body very much, or your state of health, so somehow you have not noticed – but I have

I have known you for some time now –over 22 years, actually longer as I think I first met you in 1979/80 but for a few years you were only a friend  – so I know you well enough to know - but how could I say?

How can I say that I sense you were not only ill but you are dying? When you were not even aware that you were even ill?
I have sensed death in others and I have never been wrong – but I did not think I would be sensing it in my husband who is only 55 if it was not so.

It’s just too soon……………….

Weirdly and out of the blue the other day a thought popped into my head  that you have HIV, or some rare tropical illness!!!

Why did I have this thought? On the surface I have no reason to have this thought. The GP dismisses your being unwell as late onset asthma or you are just run down and my worries are just a product of my own anxiety!

But I know well and you are VERY. VERY ill.
And because you are a seaman who has worked out of places like Africa, South America, Thailand, etc , etc for over 33 years now, yet your doctors have not seemed to take that into considerations and have not tested you even for malaria or any more rare illness that you can get in those countries.

And  because you have been in and out of the doctors for some months and you are getting worse each and every day and no one has come up with a reason and you have had so many test and none have come up with anything .

And I am ill too! Not as ill as you but I have felt so awful myself for over a year and had many tests too and all they say  - it is all in your mind!! - probably due to my history of Post Natal Illness etc they assume anything is in my mind if they do not have any other explaination - this is the story of my life with doctors. 
 Even when I nearly died of a burst apendicitus when I was 31 until it was nearly too late I was told it was anxiety, and when in labour I knew my daughter was dying inside me they told me it was also 'all in my mind!
Yet she , and I nearly died and we  only survived due to a lanst minute C - section that I was partially awake for - the horror of this I can not explain - as their was not enough time to do an epidural or even knock me out properly with a general and still save our lives!!

And when Caja 'failed to thrive' at 6 to 10 months I was told it was my anxiety that was affecting her health or I was not looking after her properly! Yet I knew it was not this and later it was confirmed she was born with a heart problem.
Be warned , if you have had mental health issues in the past and any illness is put down to anxiety by your doctors , you could, and your loved ones,  be in gave danger.

I have been in this position many times and do not want any other person ever to be.

I know beyond doubt I am not  at this time suffering any mental health issues right now so I know I am physically ill and so is Barry.



And I have known others with HIV and you just seem to be the same.
But what evidence do I have besides just a feeling?

You have never said you were unfaithful and even I know that the most common way, and probably the only way these days as you are not a drug user is to have sex with someone with HIV?

And every time you come home from sea, before we have sex I have for the entire over 20+ years of our marriage asked you if you have been unfaithful while away, and you have always said no.

I did not ask because I do not trust you but because you are human and often away in these countries for months at a time and I have seen the way women target the seamen in the hope of landing one and making a better life for themselves in the UK.

And I know how they can be persistent, atteactive and hard to resist, and as a youth worker who has run HIV awareness workshops in my job and worked with those with HIV I know how easy it can be to get if you have sex with someone infected.
And the countries you go to have a high prevalence of HIV in all, including heterosexual women.

But you always say you have been faithful so I have to think that this was just my paranoia, my mental fragile mental health, that made me think this – but underneath I know it is not, that it could be true – I hope not, GOD I so hope I am so wrong!!!!!!!!!

But most of all I know you so well that I have a sense that you are not long for life.

I so hope/wish that I am wrong.
But we will know soon.
Maybe I already knew……………but…………..

I have to get you to have a test and have one myself.
The doctors have never suggested it and I have been reluctant to say I may not believe you and to insist on a HIV test.

But I must, even just to put my mind at rest. I love you. I do not want to watch you die anymore.

When you came home and said about your symptoms – prostrate symptoms – I that this must be a reason for your ill health!
That it was not my imagination all these months
When you came home for the doctor and said your prostrate was enlarged! – I thought I knew!
That it was not my imagination all these months.
When you came home and said you had blood in your urine – I knew!
That it was not my imagination all these months


You are going to a course on Monday and you have to travel many hours by plane and then drive when tired (at a time when you are so ill and tired that you sleep the minute you lie on our sofa) yet you are going to fly to Leeds and drive to Newcastle and then do the course and drive back to catch the plane at 7 which means starting before 5 in the morning……

And I so do not want you to go!!!!!!!!!!!!

But what can I say?

If I say this it will either make you think I am mad, or if you believe me - make you scared too.

I just know that if I am right that you would rather not know until you absolutely have to – until you are in pain or so ill you can not function.

I so love you

But I look at you now and wonder how you are functioning now – how can anyone that thin, that ill and that tired function??
But somehow you do
You are amazing and I love you and just so very much

August 2007

You seem to have been better recently. The steroids seem to have helped a little – but I am still so worried.
You sleep every opportunity you have – this is just not right, you never do this. You do not seem right at all.
I have seen illness and people with HIV

I just hope that this worry is my madness – but really do not think it is .
I know time will tell

I love you

Sunday, 06 January 2008

Dear Barry I love you so much

I started to write what I did last year in Feb 07 – thinking that it was just an obsession of mine and if I wrote it down I would see how daft it was and look back at it as a passing silliness of mine.
But you seem now to be so ill to me. I am really so worried
I love you so much – you have given me so much.

But I am even more scared now.

Today is your Birthday

You came back from sea before Christmas looking like death warmed up – but you tried and as usual did not tell me how ill you were feeling. And I always take what people say not what my instincts tell me as I am always worried they my instincts are wrong – that they are just figments of my potently sick mind.

So I nagged you that you were not doing enough and there was so much to be done round the house that I could not do. And you just did not seem to be able to complete the simplest of tasks.
Of course you have always had difficulties when home in completing jobs because – I guess – you feel that you are on holiday and only want to potter. So at first I confused it with this.
But it quickly became apparent how ill you really are. Even you could not override your body any more

It soon became apparent that you were just too ill to do anything.

As usually you would not recognise how ill you actually were and would not go to the doctor and wasted at least two weeks when you could have been getting medical help in trying to sort out what was/is wrong. And instead you gave up smoking, which really was not the issue as you could not have smoked anyway as you were too ill and your breathing was too bad for you to have smoked anyway.

You rallied for Christmas when Chantal was down, with the help of steroids, and over- rode what your body was telling you, and you were ever hopeful whenever you got a new medication from the doctor. It is amazing how you can ignore your body and illness when you have reason to – I guess this is how you have been able to do the job you do all theses years? Because you have so much confidence in your ability to cope with the un-copeable.

I so admire you for this as I can not do this at all, as I can not.

I think you are ill enough to be in hospital, but then again if you got a hospital acquired infection I do not think you would survive it as you are and you would hate hospital anyway, so maybe it is better that you are here.
Why am I so worried?

Because only I see you at your worst.

You are so good at putting on an act when anyone else is around or when you need to do something. You do it for everyone, even for doctors and for Caja yet you are not even aware that you are doing this.

But when you are just with me and are lying on your bed or on the sofa, I see a man that if I saw him in a hospital bed I would feel he was not long for this world.

Please understand that I do not want this to be so!!!! I desperately want to be wrong!! Please let me be wrong!!!

Tuesday, 08 January 2008

The results of the blood test for HIV are back and of course they won’t fucking talk to me!!
But she did say there was information and something had shown up.

Now I am thinking of what could match his symptoms..
Leukaemia due to the radon is the first thing that springs to mind, Hepatitis, even HIVs as I have long been worried about this and he has lost so much weight. Otherwise cancer – not lung as this would have shown up in the Chest X Ray, but somewhere else.

God I hope it is none of those things but if it is Leukaemia or cancer we are moving from this house – the Radon has already got Gill, I do not want anyone else to get it.

We have to ring Anna at Helston surgery – or rather Barry has to – before 6pm today. God at least we may get some answers or at least more tests and sooner.

I still can’t help but think he is very seriously ill. I guess we will know soon.
I hope not but I think I am prepared for the worst.

08/01/2008 18:47:54

It was a waste of time – they rang him about the blood tests just to tell him the electrolytes test as to be repeated in a month!!!? And all they found was lowered electrolytes, which is not surprising as he has had weeks of watery diarrhoea. Why can't they find out what is wrong with him? He is really so very ill, at some points I have felt he was actually dieing at home in front of my eyes and without any medical treatment and without us being taken seriously!!!

He goes back to the doctor tomorrow.

13/01/2008

Doctor did not do anything when he went but Barry got far worse in the meantime

So I phoned the surgery on Friday night 11/01/08 as I was just so worried about him – he could not get up, he could not breath, he had a terrible taste in his mouth and could not eat!! He was weak and listless and cold, he just lay there staring into space. I was scared he was dying!! I have seen patents in hospital much less ill than he is . But he would not let me call an ambulance so I tried NHS direct and then the doctor’s surgery.

It took all day for the doctor to ring back and then he would not come out!! As they just do not think you are ill. Our GP is still convinced your illness is somehow only in my head!!
 But he did say his blood tests were a little ‘unusual’ and showed he had had a serious infection, but seemed to think that this was dealt with, but to bring him in first thing Monday Morning.
I was worried Barry would not make Monday morning but the doctor just did not seem to be concerned enough to see him

So that night in desperation I made Barry start taking the steroids again. They are not a ‘cure’ but did seem to help over Christmas so I was hoping they would improve him so he was OK to go to the GP on Monday.
They have worked he is a lot better, eating, getting up and doing a bit. But I know that they are only keeping him stable and are not a cure. Have to wait until Monday.

14/01/2008

Finally got a doctor who is listening and taking it seriously – thank god.

This is the GP who I rang on Friday who will be substituting Dr Old who is on paternity leave and at last someone is doing the right things. He has ordered more chest X Rays and more blood tests, including, hepatitis, TB, some obscure tropical diseases, malaria and HIV as he worked for many years in Africa
Barry has a consultant’s appointment on the 31/01/08

Barry, the toad, told the doctor something he has never told me before. That in Malabo (Africa) while waiting to join ship, he went out with an AB to a ‘girly’ bar and was chemically coshed in his beer and woke up in the street with all his money and other things gone !! He does not know what happened or if he had sex with any of the girls!!! Nor did he check his arms for needle marks – he is so stupid sometimes.

This is a part of Africa with a lot of HIV and other infections and he was in a girly bar with prostitutes!!!
He did not tell me because he was embarrassed! I am pretty sure he would not have had sex I doubt he would have been capable, he was probably just ‘rolled’ for his money, but he really should have told me! As this could affect me too!!

Monday, 21 January 2008 10.15am

So Scared!

Barry has just gone off to see the doctor as at last they seem to have found something in his blood tests!

Barry was called by the GP very early 8.40 am to go in at 10am to 'discuss' his blood test and other test results' He has not long gone.

This can only mean that they have found something as his next doctor’s appt was not until Friday and this was only that he should phone them to see how he was doing and usually when there is no substantial results they just tell you over the phone or when you next go in.

I am sure it will be quite bad - I just know Barry is very ill, but what is it?

He had every test under the sun, including hepatitis, TB, some I think for some tropical diseases, malaria and HIV as he worked for many years in Africa...On the one hand I am really glad if they have found something as he is definitely pretty ill and it is horrible not know why - but on the other I am scared about what it might be.?I think he is too, but does not want me to come with him?

Last weeks blood tests did show that he had had pleurisy or pneumonia - they did not know which as it was Christmas when he was ill with this and we just did not get anything taken seriously and so he was just put on antibiotics with no tests over the Christmas and New Year...
But they can tell now from his blood counts and antibodies or something that he had either pleurisy or pneumonia but not which?

But this did not explain his continuing symptoms as the antibiotics he has been on seem to have dealt with those germs, so the GP said getting theses may be just a part of low health as you can get theses along with other infections or conditions .I am just hoping that what is wrong is a by product of the pleurisy or pneumonia - like ME for instance as I have know others get ME after a major infection that was not treated soon enough. Oh well I will know soon! I hope

Monday, 21 January 2008 12.33

He has a positive HIV test!!
God what can I say
Everything I have feared has been confirmed!!!!

He is banking on the second test being negative – but I used to run HIV awareness weekends so I know quite a bit about it.

And I know the chances of a false positive are so very slim. And with his weight loss and his tiredness over the last year or two, and his recent symptoms - that the chances that this test was wrong are millions to 1!!

I have Caja to think of now and I may well be HIV positive too. I have been ill, not myself, but while  I have been tired recently and generally not as well as I might be, I am not as ill as you.

But I have to have a test; I know that catching HIV from sex as infrequently as we do it given that he is also away at sea 7 months a year is not as high as it might be.

But of course I probably have it too. We love each other and have a loving relationship and thought there was no reason to have 'safe sex' so I am probably and positive too.

Thursday, 24 January 2008 14 30

Went with Barry to see HIV consultant yesterday. Confirmed HIV and  he was admitted straight into hospital from the clinic into hospital due to his breathing.

I had to travel home 20 miles by myself - the worse journey I have ever had to do, as I feel very ill and know now he has HIV and I have it too, even though I have not yet got the results of my test.

Next Day
He is still in hospital. Had a bronchoscopy today – not heard how it went as yet as the nurse who is looking after him was not available? Will have to ring back again

I got the results of my HIV test – I am HIV positive too!

No counselling offered, they told me by phone. I was on my own - I am soooooo scared.

Oh Christ ! what about Caja?

They asked me to bring her to the HIV clinic with me next Wednesday as we thought Barry should be out of hospital by then.\

But he is now too ill, he has PCP - Pneumocystis pneumonia (PCP) or pneumocystosis - an AIDS defning illness: http://en.wikipedia.org/wiki/Pneumocystis_pneumonia

He is so very ill but they said he could be taken to the clinic from the ward  to be with us from his ward to support us through Caja's test . She needs to have the test too, she has agreed to do it and it is her choice.

She is being very brave and not upset on the surface. But if she was HIV positive too, this could change.

I have to have the same tests as Barry – god I hope I do not need to go into hospital, I just could not stand that right now.
On the one hand I definitely do not have the lung difficulties he does but I do keep feeling hot and then cold and sick and vomit now and then and have unstoppable diarrhoea . But this could be stress, because of this dreadful news over such a short period of time, only time will tell


Thursday, 26 January 2008 14 55

Just learned that many people when first infected with HIV get an acute stage in the first week or so. I was asked by Nonni ( our niece who is a respiratory physician currently doing a PHD in the subject, many people with HIV get respiratory infections so she has worked with those with HIV) if we remembered anything like this.
This acute HIV illness is called 'sero conversion'

Symptoms can include fever, hot and cold sweats a rash and flu like symptoms.
See: http://aids.about.com/od/newlydiagnosed/a/hivsymptom.htm

Symptoms Early After Infection - Acute HIV - In emergency departments and family practise offices, people come in with symptoms like fever, headache, muscle and joint pain, sore throat, rash and diarrhoea. In response to these symptoms, physicians diagnose the flu and send the patient on their way. In the majority of cases, their diagnosis proves correct. But unfortunately, a number of people with these vague, indistinct symptoms have a more serious illness than the flu; these symptoms may signal the acute stages of HIV infection.

This makes me think of when Barry came back from Brazil when I was in hospital for the second time with my fixator -see other blog here for an explanation of my fixator: http://pni-org.blogspot.com/2006/03/bionic-leg.html

And he had that terrible bug when he had all of the above symptoms, and then 3 weeks later I had it!!!
It was awful as I was just so ill anyway with the fixator and the associated infections and more difficult because I was lying on my bed with that dreadful frame at the time and by the time I got it he was back at sea, so I was on my own.

I have to ask him if anything at all happened to him when in Brazil before he came home and had this thing, that he can think of that he could have contracted HIV

I think he was unfaithful to me!!!! And not just the 'girly' bar when he was mugged!

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