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Thursday, 2 February 2012

The continuing saga of Emily's world ...

I have done a lot of e-mailing, since I last wrote a blog and I don't have any good news to report. In my opinion, the place where the PCT want to send me for therapy is not suitable. It is a facility for people who have an ABI (acquired brain injury), which in my opinion. I do not have. I am not brain-damaged in the slightest. It is my brainstem that had damage, and that is actually in my opinion, more my spinal cord than my brain. I think that I would if I needed to go into rehab unit. I think I would be better off in a spinal unit or in the NRU from which I was discharged two years ago.

I have lost a lot of my determination lately. I do not know why. I think that it might be something to do with the authorities trying to put me in a brain injuries nursing home. I am absolutely terrified that I am going to end up in a place like that in the future. It was horrible. It was like a prison and a mental health unit. I don't have a brain injury and I do not need to be treated as if I do. I do not think that locking me up with people who have dementia, etc is beneficial to anybody. For a start, who would I be able to talk to? I would probably end up hiding in my room. And on the other hand, I will be taking care away from those with dementia etc. As my needs are so complex and I need a lot of attention, which would take away attention from the other patients. If I was to go into a home, the best scenario would be for me to be with people who are like myself. Young people who are either quadriplegic or paraplegic but who are cognitively fine. Are they any places like that? Surely I must not be the only person in my situation. Surely there are some other people like myself.

So, I am really scared at the moment, that because I am turning this opportunity down that they are going to take a small amount of therapy that I do have a way from me. That is, one session of physiotherapy, with two physiotherapists for one hour and one session of occupational therapy for 30 minutes with one therapist. I was having counselling but I have now finished the sessions. If I need more in the future. I should be to get some if I go to my GP. What I would like is to be able to have my physiotherapy in a private clinic where I was going before all this crap, kicked off. Is that too much to ask? And I am a bit confused about the future. I have been getting told two different things. Some people are telling me that this is as good as it is ever going to get. And other people have told me that I do have the potential for improvement. It really upsets me because when I left rehab. I was doing great. My legs were getting stronger. I walked, for heaven's sake! I was able to do things with my arms and hands. And my neck was getting stronger. I don't want to deteriorate any more. It scares me.

I will tell you why, it scares me. I hate it. I feel like a burden I am just like a vegetable. I can't do anything what use am I to anyone. I feel like I am a waste of perfectly good oxygen. By trying to put me in a home like this. They are just trying to hide me away. They are trying to sweep me under the carpet stop me being a bother to anyone. I've tried in my e-mails and letters in fighting this opportunity to put my opinions across and everything I said just gets knocked back. I'm not going to give up. It's my life, they are playing with in my opinion. The decision that they make. Don't affect them in the way it's going to affect me. I am desperate to have more physiotherapy, but not in a facility like what they are offering. That's not suitable at all in my opinion.

Hopefully things will start looking up so. I believe that I have got some good luck coming my way. I'm still really down about having my kitten put to sleep. Hopefully in the future I will be able to get another one. There is a kitten shaped hole in my life at the moment. There has been a lot of good news around lately. For some of my friends and I am really happy for them. So many of my friends are pregnant, and that is fantastic. There is going to be a lot of babies around this year, and that is great. And some of my friends have got new jobs that are well paying. That is fantastic! So hopefully some of the good luck will be coming my way soon.



  1. well all i can say that im happy that you are still around. Sorry about the kitty though.

    In america i often hear people in trouble get told to contact their political representatives. Could you do something like that where you are? If you make the right person aware of the crap you're dealing with then they can pull some strings and help out.

    Is there any therapy that you can do on your own to strengthen up? its so shitty that you were able to start moving your arms an legs and then they cut you off :(

  2. It seems like you are going through a lot. I hope that good luck comes your way too, my dear. Sounds like you are certainly due for some.

  3. Is there an advocate group in your area for spinal cord injury? Maybe they can offer you support and some professional opinions to support your case.