Life as a Disabled Person and How I Feel About It by Emily

This guest post comes to us from a fantastic and intuitive writer named Emily. What I like most about Emily is her blunt honesty. She basically says it as she sees it. What I get from honest people like Emily is that we can learn a lot from them.  Emily is paralyzed from the neck down due to having a tumor removed from her brain in 2009. She is only 24 years old.

With this post Emily shares her views on what it's like to be a disabled person.

those of you who wish to know more about Emily you can visit her blog called Emily's world at http://emilylemony1987.blogspot.com/

- Randall Webb (aka RIW)

Life as a Disabled Person and How I Feel About It by Emily

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, to state the obvious it does really suck! I know I am lucky really because I have three wonderful caretakers. 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 tracheotomy. 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 counselor 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 counseling 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 realize 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 realize 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 apologize for bad grammar and writing style hope this isn't too boring. Much love XX

love makes the world go round