This blog doesn't make a lot of sense to me so you have no chance of understanding it but that has never stopped me before so here goes.....
The last few months have been hard, life always seems to be hard recently but because of certain things the last few months have been even harder than normal.
And yet a few really important things have gone my way,
firstly my GP explained my condition to me in plain English so I could understand a bit better what is happening to me, she said the disease is now considered to be level 4 on the seriousness scale ( it only goes up to 4)
No, this was not good news but i have always asked that people be open and honest with me, after all it is my body and I have a right to know what is happening to it.
Then the council sent an occupational therapist to assess me with a view to moving out of the ground floor flat we have lived in for the past 19 years, I spoke to her, I showed her around my home and I explained the problems I now have here.
I fully expected a fight with the council but the report that the OT put in to them must have been significant as they have placed us in the top priority group with the recommendation for a move to a suitable place with mobility level 2 requirements.
Finally some of you will be aware of the hassle I have had with the benefits people, they wanted to stop my benefits as 3 years ago they had placed me in a group that they consider should be able to return to work in the not too distant future and had lost the forms I had put in asking them to revise that opinion.
Eventually once they had found and looked at the forms, the evidence etc they agreed to me going into the support group which means my benefits will continue (at least until the next time)
So you could say that common sense has prevailed in all cases and I actually got the decisions I wanted.
So what is my problem?
What my GP confirmed, what the OT said in her report, what the benefits office read and agreed have all sent me into a downward spiral and this is where I may lose you all......
I don't think I have ever accepted, truly accepted that I have this condition,
that it is really disabling,
that I can never recover from it,
that this is me we are talking about.
I think that somewhere deep in my conscious was this belief that I was play acting, that none of this was real, that I could stop it or rewind it when I chose to do so.
Maybe that is why the fight has been so important, maybe that is why I do things I shouldn't do, maybe that is why I am unable to ask for the help I need or accept help when it is offered in good grace.
Because it didn't feel like it was happening to me.
Somewhere deep in my conscious I believed, truly believed I would wake up one morning from this nightmare,
I would once again be able to do the things I used to take for granted like walking to shops, driving, cooking, cleaning etc etc.....
Whilst I fought the council, the benefits agency and others I felt like I was fighting for someone's rights......someone else!
I am good at fighting for peoples rights, it's what I have always done, it's who I am, but that is for other people, vulnerable people.......me? No not me.
But others can see what I refuse to see
Others believe what I refuse to believe
Others know what I refuse to allow into my consciousness
I AM ........
Nope I still can't write it.
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