Thursday, 20 March 2008

Barry says he is a resilient bugger!!! - & his job

It has all been such a terrible shock. However I am now beginning to have hope

It seems that, as I have been told, theses days HIV - even AIDs as Barry was diagnosed to have - can, with modern medicine available in the UK, turn into a chronic/ongoing health situation like diabetes, rather than and immediate life threatening one.

It was not at all certain that this could be the outcome with Barry, although for me this has always been likely as I am not yet getting opportunistic infections and just have the usual problems people with HIV can have.

As Barry was not diagnosed until he was very ill.

However he is responding very well to the antiretroviral medication for HIV- so well the clinic says they have never seen any one's immune system rise so fast!! His CD4 counts at the last test had risen from 9 to 140, still not good or back to any kind of 'normal' level, but still a very rapid improvement.

As he says, he is a 'resilient bugger', and has gone from being considered to have AIDs to having a compromised, but rapidly rising immune system, so I think that for now the danger is over and we now have the task of living with this awful thing for as long and as well as we can.

I am not yet on the medications and it is my turn now to have a barrage of tests to estimate the state of my health and my immune system and to see when they will put me on the HIV medication - my tests start in earnest next week.

This is how I wanted it to be - I needed Barry's position to be sorted out/stabilized first before I could concentrate on my own health.

The only problem that we have now is Barry's doctor that does the assessment for suitability to go back to sea, says that if he continues to improve, with Chronic and controlled HIV he will not sign him off to be unable to work as a seaman and this will mean that even with HIV Barry would not get his seaman's ticket revoked so would not get his seaman's pension early and would either have to go back to sea or find a local job that would earn enough to keep us until he is 60!

I do bring in some money - but not enough to keep us in this house.

And he does not want to go back to sea!!

He is much improved but he still - no way - could do the 16 to 20 hour shifts he is required to do when working on board his ship. While he may improve further I really fear that even so to send him back to those conditions would shorten his life despite the HIV meds. Working in South America, Africa etc and flying in and out to his ship long haul on a regular basis, he will also have challenges to his health & immune system we do not have just living here.

In addition if he goes back to sea I will be left to face taking antiretovirals my mental and physical health and any side effects 'home alone' for much of the time. And side effects do happen -

Barry has them although for him they are reasonably mild they are still upsetting - diarrhoea, the odd bouts of nausea or vomiting - last happened yesterday night because he was tired and had not been able to eat due to being at the hospital most of the day for tests where he was not supposed to eat before, at the moment he need to eat regularly if he does not he gets ill - sleep disturbance, night sweats etc and there is no guarantee that mine will be as mild.

Also I need his emotional support.

Out of the two of us, Barry, due to his very resilient physical and mental health is coping with this - as expected - so much better than I am .

Selfishly I do not want him to have to go back to work at sea purely for financial reasons and leave me again alone here for months at a time.

If he became well enough, and I so hope that he does, I would be totally happy for him to get a local job in Cornwall, where he came home every night -

But as always the difficulty is that the sea and marine engineering is all he knows - and to get a shore job here in Cornwall, with the lack of jobs, his age 56, and his HIV status meaning that inevitably he will need more time off than most -

i.e. for hospital and HIV clinic visits and if he becomes ill with anything, gets a bout of nausea etc and his general tiredness - means that to get a different kind of job may be difficult. So if we can not collect his pension and he can not get a local job, be may yet be forced to go back to sea.

And surprisingly his current employers apparently would not have any problem with welcoming him back to his job at sea! Not that surprising I guess, as he has worked for them for over 26 years and he is a great worker - one of their best!!!!

They may have to transfer him to another ship if the ship goes to areas of the world where they do not let HIV people in - believe it or not many do not!!!

For instance the USA - where Barry's ship does go - do not let any national from another country with HIV, in without special dispensation - bloody bigoted of the US especially when they were the first western/industrialised country to get HIV and it often spread to many other parts of the world via people who had it in the US who travelled abroad - I am often appalled at the US in general for many things - but this is totally bigoted of that country and it appalls me!!!

This is the current position and thank you all for understanding and being there for me/us
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