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Tuesday, 27 September 2011

life as a disabled person and how I feel about it.

I feel sorry for myself today, so I thought I would blog about what it is like in my opinion to be so disabled. Well, state the obvious it does really suck! I know I am lucky really because I have three wonderful carers. They are absolutely fantastic and I really appreciate all the hard work that they do for me. They helped me feel so much better but I can't stop wishing that I didn't need them. I don't need to name them, if they read this they know that they are. I'm also lucky because I can communicate. I have seen people who are fully aware in the head and they cannot talk. I lived like that before three months when I had my tracheostomy. It is like being in your own personal prison. Even then I was lucky compared to some people as I could move my lips. I know people who can't. It must be hell. But even if I do compare myself to those who cannot communicate, to those who I am far better off than I can't help but feel sorry for myself.

I often get this miserable feeling when I am sitting here on the Internet or watching TV. I think back a few years to when I was very active and going hiking, cycling and horse riding. Even to when I was going out to work. I wish it was still the same now. I hate the fact that my body is almost completely useless. I look down at my body, I look at my arms and my legs. They look normal apart from being a little thin. But, they are pretty much useless. I can just about move the thumb on my right hand and I can slightly move my fingers on that hand and I can move my wrist a bit. My left hand cannot do anything. I do have some sensation in that hand which my occupational therapist says is a good thing. It is still very frustrating not being able to feed my self, give my cat a cuddle or even scratch an itch. My legs are also useless. The muscles are wasting away. Before all this, I would've loved to have slim legs, I guess you should be careful what you wish for. I can barely move my legs at all. I can weight bear on them when I am having decent physiotherapy and sometimes when I am doing a transfer into the car. I have not got much sensation in my legs, but I can feel pain in them. My joints often hurt a lot. I am on a morphine patch to help reduce the pain. I am also on a lot of oral pain killers, medication to stop my spasms, antidepressants and tablets to help me sleep.

I guess I should talk about my physiotherapy. This is the thing that is affecting me a lot and the moment. A few months ago my physiotherapy was great. I was getting five sessions of it a week with two very experienced physiotherapist's the sessions ran for an hour. During these sessions the physiotherapists would stand me up. They had to support me a lot whilst doing this. We built up the time of standing up to 20 minutes. It was painful but it was strengthening my legs and I was beginning to be able to move them more. Unfortunately my therapy got cut down to 3 sessions a week. I complained to the body of people that did it. They then moved my therapy from the clinic that I was being treated at to an NHS one. My new NHS physiotherapist hardly does anything with me. She just wiggles me a little bit. My legs have wasted away a lot since my therapy cutbacks. My motivation has also dropped. My new physiotherapist has told me that I will never walk again. And I might as well stop dreaming that I will. Other therapists that I have had have said that I do have potential but obviously with being treated by this woman I have no hope at all. I am fighting to get my therapy reinstated to what I was getting. I am 24 years old I deserve a chance of recovery.

I am also struggling with depression. My counsellor and Doctor say it is not surprising that I am depressed. I hate tthat I can't do anything any more.. I am jealous of my friends when they go clubbing and things like that of a night because I can't go. It feels like my life is over. I do get invited out every now and again and sometimes I do go. I am paranoid about being looked at. I have noticed that people do stare at me. Haven't they ever seen a wheelchair before? Another reason that I do not go out much is because of myy pain levels. With the counselling that I have been receiving I have been braver lately about going out. I went to the zoo and the other day and I really enjoyed myself. My friend's baby daughter is getting christened next month and I am going to go to that. I am really looking forward to it. I do want to go out with my friends when they go out. But sometimes I can't because places are all accessible. I suppose I am a bit like a Dalek I can't do stairs. I don't want to waste my life sitting in my house. My physiotherapist has told me I just need to accept the fact that I am not going to get any better and this is as good as it is going to get. I cannot live my life like this. Without trying to sound dramatic I think I would rather be dead. I know that is a selfish thought. After all these things that people have done to help me and I am thinking bad thoughts like that. The annoying thing is there are people who could make my life more bearable. They could give me the therapy that I need. They could give me the equipment I need. (I would like a standing frame and a car hoist) but they will not do it and that is because of money in my opinion. I think they need to put themselves in my shoes. Just for one day they need to live the way I have to live and then maybe I will get what I need. I don't think they realise that I am normal as such in the head. They think I'm some kind of vegetable just because I am in a wheelchair. Do they not realise that I have feelings and thoughts that I am actually an intelligence person? I did not ask to be put in this situation. I often ask myself what I did to deserve this. Yes I know this is another selfish thing to think but I cannot help it. Wouldn't you think the same if you have to live like me?

I am grateful for what I do have. I have fantastic friends and carers and a good family. I have a lovely bungalow and a gorgeous little cat. I have a car. I get some therapy. I suppose I should be grateful for what I do have. Thank you for taking the time to read this. Sorry about this blog being all moany this is just me on a bad day. Yet again I apologise for bad grammar and writing style hope this isn't too boring. Much love XX

3 comments:

  1. Emily, even when you blog on a bad day, your "moany" posts still reflect your amazing sense of gratitude and positivity. You are a real inspiration and constantly thinking of others... the people who help you, the people who read this blog and how their lives might be touched, and the other people who are suffering. You are a great inspiration.

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  2. I definately agree with sparkly - well said. I often feel super self-conscious about my weight as most women do and reading your blog just reminded me of how stupid that is. You're dealing with sooo much more than I could even imagine and here I am worring about something so vain. Thanks for writing and for sharing in your experiences, it definately made me wake up and realize that there are soo many things each person has to be greatful for and we take them for granted every day. Not that you'd like it but you can come read mine and comment away - even if it's constructive criticism - it's all welcome. :)

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