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
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