Thursday, 31 October 2013

Back home

After four long, lonely, strange and tedious weeks in hospital I'm back home for a few days before heading to the big smoke for specialists appointments. 
I had some very bad encounters with my treating Psych who dared to tell me I was only Sim's carer and our relationship had no future, I refuted her assumption and she said 'oh ok. Maybe I was wrong' - Maybe???? Fucking hell yes you were wrong madam! 
When I made a complaint about this to the nursing staff she denied 'ever saying anything about her partner' and that resulted in needing to have a nurse chaperoning every single consult we had after that, which suited me fine as it meant she wasn't purposely cruel to me anymore. She also told the nurses if I told them again I wasn't feeling safe she would organise for me to be scheduled in the public hospital - thank goodness Sister R told me this in time, so for the last 2 weeks I had to muster all my energy in pretending to be ok, I did it so well a lot of visitors thought I was working there and never would have picked me for a patient. 
I will never see that horrible psych again, even if I need another admission there I will ask for a different dr, simply because I don't trust her and without trust there cannot be a therapeutic relationship. 
Why do specialists have such a big problem when another human talks to them as their equal?
She really is stuck in a power trip. Good luck to her patients. Worse part is, I wasn't the only patient being treated poorly by her, 2 other ladies had equally bad experiences with her and the nurses knew it so they were supportive of me but there wasn't much they could do but listen to my grievances and try to come up with solutions that could work out for me without jeopardising their jobs. I shall forever be grateful to them. 
For the first time my chronic pain got addressed, I got referred to a pain specialist and will be starting a pain management program in a few weeks. I have a new approach to treating the pain and even if the reason for my admission was the chronic insomnia (which wasn't resolved), I still gained the chance to try something new to lessen the pain.

It was very sad to hear the Pain Dr tell me the pain will never go away, it cannot be cured and it will progressively get worse and it will be disabling to the point I won't be able to be independent. I was really hoping against all hope that she could say 'yes, we can cure it' but I guess is better to know where I stand, at least now I'm getting better help managing it. 
Weird side effects to gabapentin I developed: severe stuttering, expressive aphasia, urinary hesitancy, urinary frequency&urgency, haematuria, pharyngitis, increased tremor and last but not least tonic seizures and muscle fasciculations. Oh and my affect is flat. I know rationally what emotions I would be feeling but I cannot actually feel anything, I'm so very numb and detached. 
Strange to hear people's commenting on me 'looking so much better' I guess it's easier and less uncomfortable for them to see me faking a smile than to see me crying and utterly miserable out of the sorrow and grief of losing my beloved Simon. 

Being back home has been ok but it has reopened the doors to the grief, sorrow, pain, loneliness, good&bad memories, longing for him, missing him terribly it actually hurts physically. 

I feel very hurt also by his family, they don't contact me anymore, they don't need me now that he is gone, that makes me very sad. They said I had their help & support for as long as I needed it but I got told 2 weeks ago I have until February, then their help will end. I'm grateful for all they've helped and I never expected them to help really, they had no obligation. They never saw me as Simon's partner, they only saw me as his friend and his carer. 
They know nothing of the love we shared, I guess it's not important to them anymore. Perhaps I'm a painful remainder of Simon's death to them now. I don't know, I cannot read their minds. 
Just an acknowledgement of our relationship would be nice. For me. 
Fuck the money. I want nothing but to be with him and that is the very thing I will never have again. 

Everyone keeps saying 'do things in your own time, only when you're ready' but at the same time I'm being given a deadline by his family, & by the landlord, I will have to move out of our home soon but haven't been given a specific date, so, in reality I don't have much time and I know I'm not ready but I guess that's my problem and mine alone. 
Don't say things you don't mean. 

In the end I know the truth, he loved me and I love him forever, no matter what. He was my comfort, my friend, my perfect lover and I was his and by his side until the end and I'm certain he knew how much I loved him. 
Fuck the rest. They can sing high mass if they like. 
They had him during his happy times but HE HAD ME DURING THE BAD TIMES AND I WAS HIS UNTIL THE END. 

I love you Simon. May you rest in peace. 

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