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
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