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!
Monday, 19 December 2011
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 ...
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 www.ainsdalehomehelp.co.uk 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. :)
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 month.it'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. :)
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. :)
Wednesday, 30 November 2011
hello, let me introduce myself ...
I have been writing this blog for a couple of months now and I realised that I haven't really introduced myself to those of you who do not know me personally. Well, my name is Emily and I am 24 years old and live in Liverpool in the UK. I need full-time care because of my disabilies which is paralysis from the neck down was due to a brain tumour being removed two years ago just over. I live with my friend who is also my full-time personal assistant, to help me with things such as eating and shopping and so on. I have two other carers who come into help me with my personal care.
I absolutely love animals and I have two of my own cats. A little one-year-old female moggy called Rosie. She is black and white and is really funny and friendly. She loves getting cuddles off anybody. I have recently enquired a new addition to my house, Dougie and he is a little Manx rumpy kitten so he has no tail whatsoever. He is very playful vocal and greedy. I will probably add bits about these two in my blogs as they are important to me as they do cheer me up sometimes with their antics. If any of you have seen the you Tube videos called Simon's cat you will understand exactly what I mean!
In my spare time I don't do much because my body does not allow it. I watch TV I enjoy stuff such as the soaps and comedies such as the big bang theory. I also go on the Internet using blogger and twitter and Facebook. If you are wondering how I use a computer when I can't use my hands it is because I am using Dragon. Dragon is a program which is mainly designed for dyslexic people. Basically you speak to the computer and it will type out what you say and you can also move mouse around using it. It is fantastic and it makes me feel a lot more independent as I'm sure it does a lot of people in my situation.
I am trying to get braver at the moment. I have realised that recently I had become a bit housebound. Some of this is self-inflicted as am starting to get nervous about going outside. I get very paranoid that people are looking at me. My goals for the new year are to go up more. My plan is to be able to go to the cinema and to the theatre. Obviously my other goals is to achieve well in my physiotherapy. Even though I only getting a minimal amount I am going to try my best.
I absolutely love animals and I have two of my own cats. A little one-year-old female moggy called Rosie. She is black and white and is really funny and friendly. She loves getting cuddles off anybody. I have recently enquired a new addition to my house, Dougie and he is a little Manx rumpy kitten so he has no tail whatsoever. He is very playful vocal and greedy. I will probably add bits about these two in my blogs as they are important to me as they do cheer me up sometimes with their antics. If any of you have seen the you Tube videos called Simon's cat you will understand exactly what I mean!
In my spare time I don't do much because my body does not allow it. I watch TV I enjoy stuff such as the soaps and comedies such as the big bang theory. I also go on the Internet using blogger and twitter and Facebook. If you are wondering how I use a computer when I can't use my hands it is because I am using Dragon. Dragon is a program which is mainly designed for dyslexic people. Basically you speak to the computer and it will type out what you say and you can also move mouse around using it. It is fantastic and it makes me feel a lot more independent as I'm sure it does a lot of people in my situation.
I am trying to get braver at the moment. I have realised that recently I had become a bit housebound. Some of this is self-inflicted as am starting to get nervous about going outside. I get very paranoid that people are looking at me. My goals for the new year are to go up more. My plan is to be able to go to the cinema and to the theatre. Obviously my other goals is to achieve well in my physiotherapy. Even though I only getting a minimal amount I am going to try my best.
Thursday, 24 November 2011
and somebody has turned the light out.(don't read if you don't want to read depressing moaning)
So it feels as if somebody has turned the light at the end of the metaphorical tunnel out. It is silly, I should be happy. I got my MRI results back and they were clear. I have no sign of regrowth whatsoever which is meant to be good news. I am happy about that. At least that is something that is okay. Something that is going right at the moment. I asked my consultant if I ever had any chance of being able to live an independent life and he said no. I was holding on to the slight hope that this was a possibility for my future. But now I know that it isn't. All my hope has now gone. What is the point in trying if I am going to get nowhere. I really don't think I can live my life like this. The way I am now, having to rely on somebody else for everything. I feel utterly miserable. That is not a life it is just an existence. I feel like I am just a burden on society and those around me. All I do is take take take I feel like I am such a greedy selfish bitch.
What can I do? I hate waking up every day feeling like this. The only thing I look forward to is going to sleep. At least when I am asleep I am not in pain nor feeling miserable. Sometimes I have dreams where I am normal and healthy and I feel so happy. And then I wake up and reality hits me yet again. Is it right that I should feel like this? I am sure that there are people out there who would do anything to be in my position. People who are worse off than me at the moment, say for example people who are terminal or are unable to communicate. I try to see the bright side I really do. I try to think about the things that I am lucky to have such as my friends and family my cats and my things such as my car and bungalow. But I am a greedy and selfish person and I want more. I want to be able to be independent, to go back to my job even to be able to give somebody a cuddle. I feel like I am being punished for something and I just don't know what I did to deserve this.
Anyway. I am going to leave it here. Thank you for reading. X
What can I do? I hate waking up every day feeling like this. The only thing I look forward to is going to sleep. At least when I am asleep I am not in pain nor feeling miserable. Sometimes I have dreams where I am normal and healthy and I feel so happy. And then I wake up and reality hits me yet again. Is it right that I should feel like this? I am sure that there are people out there who would do anything to be in my position. People who are worse off than me at the moment, say for example people who are terminal or are unable to communicate. I try to see the bright side I really do. I try to think about the things that I am lucky to have such as my friends and family my cats and my things such as my car and bungalow. But I am a greedy and selfish person and I want more. I want to be able to be independent, to go back to my job even to be able to give somebody a cuddle. I feel like I am being punished for something and I just don't know what I did to deserve this.
Anyway. I am going to leave it here. Thank you for reading. X
Thursday, 13 October 2011
the world from a wheelchair ...
I just thought I would write about what it is like going out and about in a wheelchair. I hope that it will make some people think about how they treat people in wheelchairs and also those who are pushing them. I will start off by saying about accessibility. There are many places that I cannot go now because they do not have access they just have stairs and a lot of them. I cannot do stairs. Maybe one step is okay I can just about be pushed up one step in my chair. Any more is just too much for my carer to do. Some places do not have stairs still do not have suitable access as their walkways are to narrow and there is not enough room to manoeuvre a wheelchair.
he main problem I have though is not with accessibility but it is with people's attitudes. I despise it when I go into a shop with my carer and the person who is serving on the till just ignores me and speaks to my carer instead even if it is me who is making the purchase. How patronising is that? Back when I was able-bodied when a disabled person came into my shop in a wheelchair I would never ignore them and I would serve them or ask them who was paying. It is not hard and I wish people would treat me like this now. I have been in restaurants and the waiters have asked my carer's what I want. '' What is she having?'' And my carer's just say '' why don't you ask her?'' I have heard of people in wheelchairs being patted on the head and their carers or partners being asked,'' can they talk?'' What makes people think they have the right to speak and act to somebody like that? Why do people think they need to speak down to me and patronise me? My legs and body might not work but my head is fine.
And to continue with my moaning and you other people reading this who are in wheelchairs will understand this moan. Maybe the same thing has happened to you. Those of you who have babies in prams will also know what I mean. This one is about when you go into a shop in a wheelchair or pushing a pram and other customers start tutting,huffing and puffing because in their opinion you are in the way and should not be allowed to go into such places. It is the same when you go into restaurants and pubs and people give you dirty looks when you go in and try to get past them. Maybe they think people with disabilities should just be locked away and not seen in public.
There are some benefits though but I would much rather be able to use my legs. They are that I get to use disabled parking. I can have a carer come to the cinema with me for free. I get to queue jump in some places. And I guess that I always have a seat. Anyway I hope you've enjoyed reading my complaining. Helps me feel better anyway. Let me know what you think. X
he main problem I have though is not with accessibility but it is with people's attitudes. I despise it when I go into a shop with my carer and the person who is serving on the till just ignores me and speaks to my carer instead even if it is me who is making the purchase. How patronising is that? Back when I was able-bodied when a disabled person came into my shop in a wheelchair I would never ignore them and I would serve them or ask them who was paying. It is not hard and I wish people would treat me like this now. I have been in restaurants and the waiters have asked my carer's what I want. '' What is she having?'' And my carer's just say '' why don't you ask her?'' I have heard of people in wheelchairs being patted on the head and their carers or partners being asked,'' can they talk?'' What makes people think they have the right to speak and act to somebody like that? Why do people think they need to speak down to me and patronise me? My legs and body might not work but my head is fine.
And to continue with my moaning and you other people reading this who are in wheelchairs will understand this moan. Maybe the same thing has happened to you. Those of you who have babies in prams will also know what I mean. This one is about when you go into a shop in a wheelchair or pushing a pram and other customers start tutting,huffing and puffing because in their opinion you are in the way and should not be allowed to go into such places. It is the same when you go into restaurants and pubs and people give you dirty looks when you go in and try to get past them. Maybe they think people with disabilities should just be locked away and not seen in public.
There are some benefits though but I would much rather be able to use my legs. They are that I get to use disabled parking. I can have a carer come to the cinema with me for free. I get to queue jump in some places. And I guess that I always have a seat. Anyway I hope you've enjoyed reading my complaining. Helps me feel better anyway. Let me know what you think. X
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