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Monday, 19 December 2011

New years resolutions ...

What is 2012 going to bring? I hope that this year is going to be a good one. So what are my new years resolutions? I have a few. First of all, I am aiming to improve my physical condition. I hope to be able to improve my sitting balance, movement and strength. I am paralysed from the neck down, I still have not accepted that this is a permanent thing because I believe it isn't. I have had physiotherapists who have told me that I do have the potential for improvement and I choose to believe them. My New Year's resolution is to work on these things a little bit at a time. For example, sitting up for 30 seconds and building it up from there. Sometimes in my physiotherapy sessions I do standing. I aim to build this up as much as I can. The that I do on my legs the better. I am going to visit my previous physiotherapist, the one who said that I have potential. I am going to ask her to recommend to me a standing frame. This way I will be able to do standing at home with my carers. Maybe eventually I will be able to do about 15 minutes a day. I will be able to build this up more and more. Like I said, the more weight bearing I do, the better. Eventually I WILL be able to walk again. Just you watch this space.

Another New Year's resolution of mine is to stop being so depressed. I really need to cheer up and be grateful for what I do have. If I am so miserable I will not have the strength to fight to get as well as I can.I need to believe in myself more, I need to believe that I can get at least a bit more stronger. Another important thing that I need to do this year coming is acceptance. I need to realise and accept that what has happened to me has happened and that it cannot be undone. I need to realise that it is not a bad dream that I am going to be able to wake up out of it because it is reality. I need to stop blaming myself. I did not do anything to make this happen to me and I need to learn that I am not being punished for something. On the subject of blame, I need to forgive those who have let me down. Holding grudges against people is just going to make me a bitter person.

Finally another New Year's resolution is to try and help as many people as I can. I often believe that there is not much I can do that would help people with me being quadriplegic. But there is. Without tooting my own whistle I have been told that my blog helps people. So my plan is to continue with my writing. Maybe there is more that I can do to help people and I hope to learn what then things are over this next year and I hope to be able to do it.

Anyway I hope 2012 is going to be fantastic for me as well as you!

Sunday, 11 December 2011

one day in my shoes ...

I get angry and upset sometimes so I thought I would get my feeling down in this post. This post is me venting some frustration. Frustration at those who decided not to be my friend once I became ill, those who don't bother with me and avoid me as much as possible and of course those who sit there in offices making decisions to cut my therapy and care down.

I know you people don't have to live with the consequences of your actions. But I do. I have to learn to cope with reduced care and therapy.I have to learn to cope with the pain and stiffness that reduced therapy results in. Yes, I know there are many people who are worse off by myself and I appreciate that, but you have the opportunity to make somebody's life better and you have decided against it. I don't think you realise how much your decisions impact on my life.

And those of you who have decided not to be my friend because of my condition or have decided to spend as little time as possible with me. How do you think makes me feel? It makes me think of the L'Oreal advert except it would be,' because I'm worthless.' When something like what has happened to me happens to a person it is really helpful to get all the support possible. Obviously, some people think they are too good to spend time with a disabled person.

So, I challenge you how would you like to spend one day in my position? Picture this, you cannot move from the neck down. You need help to get out of bed, to get washed to go the toilet and eat. If you are in discomfort because of your position you can't fix yourself. You need help to do so. If you have an itch, sore eyes or a runny nose you can't sort yourself out you need to ask for help to make yourself more comfortable. I bet you never thought about what it's like to be in my position. I guess I never did until it happened to me either. Just think of though, it is not just me in a situation like this there are many people. If you have the opportunity to help somebody less well off than yourself then do so. I know there are many people worse off than me so I will aim to help them if at all possible.

To be honest, there is no point in me writing this really. Because the people I am angry at not going to bother reading this. I have had amazing support of my friends carers and family. People probably don't realise how much their support has helped me. I may not see some people, but I know they are not avoiding me. I hope people don't feel guilty for not meeting up with me you are not the people who I am angry at. I may not have have seen you in person for weeks but we may have had a conversation via Facebook or something and that means a lot to me. And also to the people reading this who don't know me at all. Are there people in your life do you know who you can give support to? I am sure there is. There is somebody that everybody can help I am sure.

So, as I was saying, one day in my shoes, that is all I ask ...

my carers.

so I thought it was about time that I should dedicate a blog posting to my wonderful carers. If anybody following my blog is looking for care workers maybe for a family member I would strongly advise you to check out this company as they are absolutely fantastic. :)

My PA is Tony he is fantastic. I have been friends with him for over 10 years now. He has given up his life at the moment to care for me. He did this to get me out of the care home and because I needed it. I really appreciate everything he does for me. We irritate each other sometimes but in all we get on quite well. He is a guitarist and a motorcyclist so he has some good hobbies to do. He is also a Christian. His faith is important to him and is part of who he is.

My carers who assist me with my personal care are Dawn and Cathy. They are amazing. They are both absolutely brilliant at their jobs. They make me feel as if I am normal and not disabled. They assist with my personal care and toileting which was embarrassing for me at first but now I am used to it and they have helped me overcome my embarrassment. I am now well cared for and I no longer feel disgusting and dirty like I did when I was in the nursing home.

All three of my carers are excellent. They all work so hard and they make me feel good about myself. I often feel as if I am a burden and they make me feel as if I am not. They cheer me up when I am down and they are helping me to learn to cope with my condition. I really appreciate all the work they do for me and I hope they realise that I am so grateful for them. I wish there was something that I could do to repay them but unfortunately there isn't. All I can do is try my best to get better for them as well as myself. I love all three of my carers to bits and I'm so happy that they are my carers. :)

Wednesday, 7 December 2011

and another week passes

My car hoist finally arrived this week. We haven't put it together yet. I'm looking forward to being able to get in the car more easily without messing around and the discomfort. I am a bit nervous about it though, I haven't left my house in over a's getting to the point now, where I am scared to go outside. I hate going outside. I feel so exposed and vulnerable. When I am at home I feel safe because I can hide away in doors.

I have been scaring myself as well. I've been thinking too much. I've been thinking about what's going to happen to me in the future when the people who are with me now such as my carers have moved on. What am I going to do then? I know that things are going to change within the next year. My PA is going to move on, I know that and I want him to. I want him to be able to live his life and get on with what he wants to do with it without being tied to me. I am not his responsibility and I don't want to be either. I don't want to hold him back from his life. I am very grateful to him for that time that he has given up for me but he does need to go and do his own thing.

But still I am thinking what is going to happen to me? Who is going to look after me? Will I have to go back into a nursing home or pay for a full-time carer who is a stranger to me to come and live in my bungalow with me? Or maybe, I will be strong enough to be alone. And be able to manage on having carers drop in on me a few times a day. I don't know. I feel sick with worry thinking about it. I'm scared of being alone. I am scared and worried about the time in the future when all of my friends get married and have children. I know this will never happen for me because who is going to want somebody like me? I just feel like I am a spectator of life rather than a person living it.

Even though I am scared, I am going to use my car hoist. I have made plans to go to some support groups. I have been looking online and have found support groups in Liverpool for those affected by brain tumours and spinal-cord injury. Maybe if I go to one of their meetings I will meet people in a similar situation to myself. I have never met somebody paralysed to my extent before. And I would really like to as it would be interesting to see if they feel the same way that I do. Maybe they will have advice for me. Also, I have been advised by my friends therapist's and carers to get out more so I am going to try and do so. I have plans in the near future to go to the theatre, go and see stand-up comedy, bands and maybe go and get my hair done and go shopping. I am definitely getting a new tattoo done soon I just don't know where on my body yet.

Nothing much has happened in the way of physiotherapy lately. Unfortunately I've had a few infections which have affected my sessions. I'm over my infections now so hopefully on Saturday I am going to be able to do a stand. I haven't stood in over a month. It will be painful but it needs to be done. The more weight bearing and I do the strong are my legs will become. And maybe one day I will be able to walk again. Now I have my car hoist my plan is now to save up for a standing frame. Maybe I will be able to hire one. If I got one I would be able to practice standing everyday. And I will be able to get stronger and stronger and I will undo the damage done to me by the lack of physiotherapy. I think I will in the New Year go and speak to the lady who runs a private physiotherapy clinic I used to go to. I will ask her what standing frame is most suitable for my needs as I know there is a lot of them out there and I need professional advice on the matter so I do not get the wrong one.

I hope I can learn how to walk again I really do. I guess the only person who can make sure it happens is myself and I will do that when I pull myself out of the depressive rut I am in at the moment. Anyway thank you for reading this. For those of you who have left encouraging comments on my blog thank you very much. You have no idea how helpful your comments are to me. They have given me such a boost in confidence. If total strangers have confidence in me then I should have confidence in myself. So yet again, thank you very much. I will be writing again soon. :)