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


Winegirl said...

Hi Vee, hope I am ok to post here? Just wanted to say how disgusted I am that Barry in his condition may not be signed off work! So many people are signed off these days for so many things that it astounds me that this may not be the case for Barry! If there is anything I can do for you guys, please just ask. Sending my love and support to both of you xx

Helen x

Veritee said...

Thanks WG
It has something to do with him being a seaman. In any other job he would be signed off until he feels fit enough for work again - but as a seaman you are either fit to go to sea ( maybe with restrictions ) or permanently unfit altogether and forever - so it is difficult to know what to do or what to try and get.

To go to sea at all you have to have a special medical certificate to say you are fit for sea. If you are fully fit with no restrictions you get an ENG1 which Barry always had - and if you are not fit a you get an ENG3 with a fitness category of 4 - permanently unfit, which Barry would need to claim his pension ( an ENG3 with the fitness category 4 that means he can never return to sea)

The possibility right now however is with treated HIV he will get a ENG2 which will mean he is able to go to sea with restricted duties and probably restricted countries that he can work. BUT!!! he will never get a job with restricted duties/conditions in what he does until he is a LOT fitter than he is now and he will not get his pension either - so this could leave us with just incapacity benefit which just is not enough to keep us in our home.

The other possibility is an ENG3 with fitness category 3, which means it is considered that one day he will be able to return to sea probably on restricted duties.

Either way he will not get his pension, which we need to pay off our mortgage so we can live in our home and not have to move - so we are hoping for an ENG3 with fitness 4.
But this is a catch 22, because if he get this he will never be able to return to sea, so even if once the HIV meds really kick in he feels up to it. And with time there may be an opportunity of a local seaman/marine engineers job out of Falmouth locally - but with an ENG3 of that category fitness he would never be able to do it at anytime.
The problem is that while he does not want to go back to sea as his job is now, by this he means not back 'deep' sea away for months at a time thousands of miles away - but he does not rule out wanting to work on local boats for a few days at a time to supplement his pension, If at all possible Bary want to work a bit although preferably locally - but after almost 35 years doing the same job 'deep' sea Barry knows nothing else to earn money, and if he gets signed off for this he will not be able to ever work at sea again - some how we are hoping to get a ENG3 fit 4 but with the option of changing it to a ENG2 restricted later - but this may be impossible - and if they think he can work at all with HIV or anytime in the future - which it seems that may feel this, we do not get the pension - very difficult :

Winegirl said...

Oh crikey Vee what a mess! What an odd setup!

I dont know what to say, wish there was something I could to help?

Am I right in thiking you have a bit of land with your property? Have you ever looked into selling some of the land?

I know this is not the ideal solution and i dont think any suggestion is, i am just typing out load really while I think about what I would do in this situation.

Does Barry even want to go back to Sea? How many years are there until he is automaticlly entightled to his pension?

Sorry if I am rambling, just wanting to be helpful I guess.

I am thinking of you both xx

Luv Helen

Veritee said...

Veritee said...
Don't worry at all - we will work something out - I just use the blog to sound off about the things that we have to deal with - the stuff we have to sort out.
But its OK - we will get there ......I guess at the worst.....

Barry and I will have to go on benefits for another 4 years until he can pick up his pension - and we will have to try to live frugally until we can collect his pension....... or not go on benefits at all and try to earn enough to keep us until then.

Sorry about my offload - I am sure it will pan out somehow, and way or another.

As Barry could try to insist on a ENG3 - fitness 4- and if he gets it accept he will never go back to sea - or he will have to get a ENG2 and try to get a local job - we will survive as we are both very resilient.

As to selling any of our land - it would seem on paper a very good idea as we have 8 acres, in addition to our house and garden -

But one we have considered in the early days looked and into and is just not practical or really desirable or possible .........well for a start it is agricultural land only - a registered smallholding - and would not get planning permission for anything else and agricultural land is worth very little in terms of cash. It is also subject to planning restrictions due to its location!!

Stick our land in a different place, near a town or somewhere more key in terms of building and development ..... and it would be prime land, but our land is in the depths of farming Cornwall - where agricultural land is worth very little if anything - most of our neighbours own far more land than we do, also worth nothing on the open market and not developable......

At first I found this hard to understand as it is not that beautiful as land goes , just fields with a great view

But now we understand and respect this and have been custodians of this land for 21 years - we would not now want to see it built on.

But you can not get planing permission to build on it or otherwise develop it anyway , so it is worth nothing at all in financial terms to us really!!!

But the view is great - fit to die for sometimes and I can walk my own fields wit my dogs, look at the wonderful sunset and think - I own this little bit of the UK!!

If you ever come and stay - which I very much hope that one day you may - you will see why we love it but anyway could not sell it separately from our house, even if we wanted to -

It is just not in that sort of situation to do this.

But also if you could see it you would see why we would not want to -- the joy of living where we do is a lot the land that surrounds our home and our lovely views etc and isolation. If we did not have this we would move with no difficulty to an estate or road in a town or something - it is the unique situation and the land surrounding us that makes it worth fighting to stay.

We are very privileged and lucky to have it but if we had to sell the land we would just sell it with the properly for the next residents to care for and move as the land is what makes it why we want to live here really.

Hopefully we will get Barry's pension - or manage somehow until we do - and keep our home for as long as we are able to look after it.
And one day you will come and visit with your family.
watch this space as this is what we aim at
Veritee XXXX

Winegirl said...

Any chance of coming to visit without screaming child and grumpy husband?! LOl x

Yes, I never thought of it like that. Of course 8 acres of land in Cornwall is seen much differently to 8 acres of land up here! Where we are there would be a que of people begginf to buy it off you! But of course it is very different where you are.

And it must be fabulous to have that space and open views and fresh air and peace!! We have a yard wit a rotweiler the other side of our fence and sirens up and down the streets all day! LOL x

I am certian that you will keep your beautiful home and you guys will be just fine. But always hre for you guys anyway x

H x