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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. :)

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.

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

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

Tuesday, 11 October 2011

ifs buts maybes and generally feeling stressed.

yet again I am blogging. I find it a good way to relieve my stress and it is a good way to get things off my chest. And also it is a good way of recording the things that are happening so that I do not forget. I still do not know who it was who made the complaint about my level of personal care. My so-called social worker said that it was my private physiotherapists, I really hoped that it would not be them as I really like and trust them and this would be a way of breaking my trust as it would have been going behind my back and treating me like a child. So I asked them, and they said it was not them and that they would not do something like that because it is nothing to do with them. So who was it? The mystery continues. Obviously somebody is trying to mess things up for me. I would really like to find out who it was and ask them why they did it.

So I started feeling miserable again. Is it wrong that I should feel sorry for myself when there are people who are a worse than myself who don't moan half as much. I do like moaning though. I have been wondering if it could have been any different. Is there anything that I could have done different to have not ended up like this? I am annoyed as well because I tried so hard in the rehab unit to improve my condition. The physiotherapist's, occupational therapists and nursing staff worked so hard with me and I was pleased with what we achieved as I managed to walk across a room. After months of being in bed that was an amazing feeling. But then I get dumped in a nursing home and get no therapy for three months and I lose everything I have achieved. I have not lost everything just one time I have lost it twice. I find that is so depressing. I then received some physiotherapy I was slowly improving again. Maybe I could have got back up to the level I was. But oh no the PCT put time limits on how long you are allowed to get better for. And now I am only given 2 outpatient appointments a week. I told my physiotherapist what I have achieved in rehab and she told me that it was all lies and everything I did there I actually didn't do. She said it is impossible for me to have walked. I know I did because I was there.

I know I will never be 100% better. I just know I can be better than I am. Maybe I will be able to work again. I would love to go back to my shop. Before I got ill I was just about to start my veterinary nursing course. I will never be able to do that now. I need to stop thinking these depressing thoughts. I realise now that I will never achieve any of my ambitions. I will never work with animals again, I will never have my own family as I am definitely not going to be able to have children as I am unable to look after them and I can't even look after myself. Also I am never going to have a boyfriend now. Who is going to want somebody like me? I think if it was the other way around would I date somebody in my situation and I don't think I would so I cannot possibly judge anybody. I will cheer up soon. Another thing that made me mad the other day was an able-bodied person saying to me I should be grateful what I have. How dare somebody with such a perfect life say that to me. That is so hypocritical. I am grateful for what I have but I am struggling with depression at the moment.

Monday, 10 October 2011

a letter i've written, but thought it may be applicable here too.

My name is Emily Austin. I am 24 years old. I had a brain tumour successfully removed in 2009. I was left with NO PERMANENT DAMAGE.  I am writing to you because I am being harassed and bullied by the Liverpool Primary Care Trust and Liverpool Adult Social Services.
                Liverpool PCT firstly saw fit to breach my human rights by reducing my physiotherapy for no reason other than to cut spending.  When i made a complaint about this, they formulated a response which was nothing more than a lie to cover up their illegal actions.  Additionally, once the complaint had started, they decided to move me from the clinic where I was being treated to an NHS outpatients clinic.  I believe this was an effort to deceive any outside parties who may investigate their decision to reduce my therapy.
The therapist at the NHS clinic had already been told what amount of treatment she was going to give me.  My original therapist had gone against the PCT and advised them not to reduce my therapy and I believe this is the reason that they moved me, not the reason they have given in their response to my complaint.   I was never told about any intention to eventually place me in an NHS clinic or anywhere else and I still haven’t seen any proof or any sort of documentation to back up their claims.  The PCT also chose to ignore a letter from my consultant neurosurgeon advising that I need aggressive physiotherapy and not therapy based on two outpatient appointments per week.  The reduction in physiotherapy has not only caused my progress to slow down and stop, it has actually caused a reversal to the point where I am almost at the level I was before I ever started to receive physiotherapy.
Additionally, the length of time it has taken to process any enquiries I have made is appalling.  In the response to my complaint, I received an offer from the PCT for another physiotherapy assessment. The letter is dated for the 26th of August and I have still not heard any news regarding the date for the assessment.  I suspect that these delays are being made on purpose in the hopes that I will give up and go away.  I can assure you that I will never give up!
Furthermore, in May of this year, I had a scheduled care plan meeting with my social worker and was told that there would be no further care plan meetings for 12 months.  I have documentation which confirms this.  Following an alleged complaint from one of my physiotherapists about my level of hygiene and personal care, my social worker contacted me to organise another meeting in September of this year.  At this meeting, we asked to see the letter or any evidence of this complaint.  No evidence was presented to me as she hadn’t yet received the information from the PCT.  I am lead to believe that this meeting should never have happened while the social worker did not have all of the relevant information regarding any complaint with her. Since the meeting I have written to the social worker requesting a copy of the letter of complaint because I believe it is my right to see this letter and any other relevant information about myself that I request.  My social worker has informed that I am not allowed to have a copy of this letter as, in her words, ‘it involves a third party’.  She has also told my carer, during a phone call, that Liverpool district nurses have expressed concerns about my safety and wellbeing because there is no key in the key-safe at my front door.  There is always a key in the key-safe.  Again, I have seen no evidence to support any such complaint.
I think all of these ‘so called’ complaints and allegations were excuses for the PCT and the social services to call a meeting at the complex needs panel where my direct payments have been reduced by 3 hours per week when my circumstances haven’t changed since May.  The reason given for the reduction in hours is because my physiotherapy now takes place locally in Aintree twice per week and once a week at home.  I can accept a reduction of 1 hour for the session that takes place at home, but to revoke the other 2 hours for my P.A. to escort me to the NHS unit is not acceptable as I cannot do anything for myself and therefor will not be able to get to my sessions.  The PCT and the social services cannot expect my P.A. to work for free.  My social worker has informed me that there will be another care plan meeting followed by a complex needs panel in six weeks time.  I am fearful that this will be taken as another opportunity to reduce my care plan further.
My social worker and the care coordinator from the PCT have both met me in person and are well aware of my physical condition and the fact that I am unable to carry out even the most simple of tasks.  It is obvious then, to say that I am completely reliant upon others for every aspect of my life right now.  Because of the actions of the PCT, I am likely to stay in this condition for the rest of my life unless somebody intervenes on my behalf very soon. Please help me.

Tuesday, 4 October 2011

the harassment of Emily by the PCT!!!

so are the PCT harassing me? I certainly think so. They are supposed to be looking after me and in my opinion they are not doing a very good job of it. They are treating me like I am a naughty child. Constantly prying into my life. I am currently very happy with the care that I receive off my three carers. They are absolutely fantastic at their jobs and they are very hard-working. For some reason the PCT got it in to its head that my personal care was being neglected. That was completely untrue. I am unsure who exactly made the allegation and I have asked my social worker for a copy of the letter of concern regarding my care. I am not allowed to get this letter as it involves a third party. Surely I should be allowed to see documents that are about me. And where were the PCT when my personal care was being neglected when I was in that nursing home? They didn't care then did they? It seems to me that the primary care trust want me back in a nursing home. And they are constantly picking problems out of thin air about my life in the bungalow. I know it is much cheaper for me to be in a nursing home. What kind of life is that?

So why do I think the PCT is bullying me? Well it seems that every time I complain about the actions the consequence is that they make things worse. For example, when I complained about the reduction in my physiotherapy they moved me from the clinic I was being treated in into an NHS one and they also tried to cut my physiotherapy down to 2 sessions a week but because they worded a letter to me poorly I was able to keep another session. They are dying to take off me as well. And also after this complaint I made and they  took three hours off my care package. I got told that my last care package review that I would not have another for another year. Four months after that I get told I am having another review. It was the result of this meeting that I got the three hours taken away. I have been told that I am to have another meeting in a few weeks. My carers have got to keep detailed logs on my care. For example how often and what I am eating and how often I need assistance during the night. It's like I am being spied on. It is harassment in my opinion. I know why this is it is so they can take away as much care as possible so it was cheaper for them. I am scared that they are going to reduce it and reduce it until I have no choice but to go into a home. Why have I got to suffer because of money? Me and my family have paid tax, you would think that when you become ill, you will get looked after by social services. Isn't that one of the things that tax money pays for?

So anyway, if social services want detailed logs on me I will do detailed blogs on here about every little thing they do and see how they like it.

if there is anybody out there who can help me sort all this mess out please get in touch with me I am starting to get desperate.

Monday, 3 October 2011

so let's call it hellside

so I had six months living in a nursing home. I am worried at the moment that social services want me back in a nursing home. I know that it is a cheaper option for them rather than me living in the community in my own bungalow using the direct payments scheme to employ carers of my own choice. I am a lot happier in my bungalow and I have gained weight and am not as depressed as I was in the nursing home. So yeah I'll tell you about it.

I didn't want to go into a nursing home but I had no choice. There was nowhere else for me to go. I actually got told that I had to go to a particular nursing home and it was either there or an old people's home. I definitely didn't want to go to an old people's home. I got told that it was a young disabled unit. Well let me tell you something. It certainly wasn't. I was the youngest person there. Other than a young man in his 30s who I knew from rehab everybody else was at least 50. There were three people on the unit who suffered from MS. Nobody else on the unit showed any sign of physical disability. A lot of them were alcoholics.a nursing home is just not the right place for a 24-year-old to be. I was in a room on my own for about 21 hours a day. Sometimes more if I didn't have any visitors. It was like being in prison. I would just lie there staring at the ceiling. It's got less boring when I got a television. Daytime TV sucks though. I became an expert on airline. I can't fault the staff, other than one nurse. I guess the home was understaffed. I would ask every day if I could have a shower and usually I was told no because they were too busy. It's a horrible feeling being unclean and being unable to do anything about it. One time when I had a shower, it was with the nurse that I have a problem with. First of all I was undressed on the bed. That was fine. I was then put in the shower sling, I was tossed around like a rag doll getting me on to the sling. I was then hoisted into the shower chair. Other than being a little rough with me getting onto the sling everything was normal. I had a large towel placed over me for my dignity whilst the nurse and a carer wheeled me down the corridor to the wet room. When I was getting showered one of the pagers went off. And the nurse ordered the carer to go and answer it. There should always be two members of staff with a patient with a disability is such as myself when doing something such as showering. The carer went to answer it. The nurses Pager then went off. I know it was not an emergency call as the bleep would have been different. Even though she knew that I couldn't be left she opened the door, left it open and wandered out. Leaving me exposed! I felt so humiliated, vulnerable and angry. There were plenty of able-bodied men in the unit who could be walking up and down the corridors. I screamed and shouted for her to come back and shut the door and when she did after about a minute she came back and had a go for shouting. I was fuming. She covered me back up and took me back to my room. With assistance she hoisted me back onto my bed. The other carer then left the room as somebody had shouted her. The nurse then wandered out of the room leaving the door wide open leaving me exposed for the second time in a day. She came back quickly and didn't even apologise. I don't think she even realised what she had done. I complained about this issue to my social worker.

The staff toilet was next door to my room (or should I say cell) anyway, I could hear the toilet flushing. And I can also hear whether or not they washed their hands. Well, the majority do not. As I have to be fed as I cannot do this on my own I decided not to be fed by people who did not wash their hands after using the toilet. Some of them even had filthy fingernails. How can I possibly eat food handled by them? I then only had something to eat when my friends and family came in. So I was eating about say maybe three meals a week. I lost about three stone in weight.

Luckily after three months of no physiotherapy I was then via a lot of phone calls and writing letters and with the assistance of my local MP I was noticed by the PCT and I was granted physiotherapy five times a week. I was glad to be getting out of the home for a while. I had to get a carer escort to go with me in the taxi to keep me safe. Unfortunately one time I was given an escort who was a complete dozy cow. She sat next to me in the taxi and didn't keep an eye on me. The Escort is meant to make sure that I am safe. This one certainly didn't. She was gazing out of the window when we went round a corner. I went flying out of my wheelchair. I was lying on the floor and the taxi driver asked if I was okay and the Escort just looked at me and asked me if I was okay to which I replied do I look okay? In the end the taxi driver came and picked me up. At least he had common sense. When I got to the clinic I told the physios that I have had a fall and the Escort and yelled that I had not. Luckily the physios believed me. They could tell by my bruises and the tightness in my muscles.
I made sure that the Escort never take me again.

I was meant to move into my house in September. But due to my social worker being an incompetent cow it was delayed until the end of November. And the only reason it happened in November is because one of my friends got fed up of the social worker being lazy and messing around. He got the necessary numbers of my social worker and sorted out me moving in to the bungalow. Sorting out things like hoists and the shower chair and a hoist. We had a bit of a problem in getting the equipment because I was moving from Knowsley into Liverpool. After much messing around by both councils I eventually got all of my equipment and could move in. I was so happy to have escaped the nursing home. I feel sorry for people who have to live in them. I feel sorry for the staff who have to work in them. I don't want to go back to one. It is like prison and I do not think that I deserve that sentence ... thank you for reading. X

and so it continues ...

so this weekend has been bad. It is amazing how one sheet of paper can make me feel so miserable and make me lose yet more hope. This latter said that my care package had been reduced by three hours. To those of you reading this that probably doesn't sound like much. But to me it is. In my opinion if they are taking these hours away from me it just gives them the opportunity in the future to take more. I am really worried that they are going to take more I eventually going to get left with nothing? Yet again the people who are making these decisions that really affect my life have never met me. My social worker is meant to fight my corner and it doesn't appear to me that she is. It is so unfair and I am getting so worked up and stressed. I think they want me back in a nursing home. I know that it is cheaper for them that way. I am really worried about that. I don't want to go back to that hell. I know it sounds dramatic but it is hell! This is only a mini blog. I will go and write another one about my time in the nursing home you understand then why I do not want to go back. I know that my friends and family will not let me go back and I am a stubborn cow so if social services try and put me in a nursing home it is going to be with me kicking and screaming. I guess that would be good exercise for my legs and lungs though. Anyhoodle that at the end of this mini blog. I am now off to write up about my stay in a nursing home. Thank you for reading. X


brief history.

I had a benign brain tumour on my brainstem. The removal of this left me quadriplegic and in intensive care on a life-support machine for three months. When I was healthy enough, I was discharged into the Walton NRU. I was a patient there for approximately 8 months. Whilst I was there I received physiotherapy and occupational therapy five times a week. Each session ran for 45 minutes. After eight months of intense physiotherapy my therapists got me to the stage where I was able to walk across a room with assistance. I was really happy and relieved when I managed to achieve this as I thought it meant that I was not sentenced to a life in a wheelchair. However, as there was nowhere else for me to go I was then discharged into a nursing home. During my first three months in the nursing home I suffered abuse and neglect and received no therapy. Because of this I was left in a bed for the three months. My body deteriorated a lot because of this. I was unable to do my physiotherapy exercises because I had no body to assist me. I was pretty much left on my own for at least 21 hours a day. Without trying to sound overly dramatic and that was quite psychologically traumatic, as it was like solitary confinement. Following a lot of phone calls and writing letters my friends managed to sort out me getting some physiotherapy. That treatment was supplied by a private neurological physiotherapy centre but it was funded by the local PCT. I was then getting treated 5 times a week by two highly experienced physiotherapist's for an hour per session. During each session the physiotherapist would stretch and move my arms, legs and head and neck. They would also work on my trunk and sitting balance. We would also do standing. I need a lot of support physically to do a stand. We built my standing up from 30 seconds gradually to 20 minutes. I was very proud of this achievement. Even though I had achieved better before I had had to start over from the beginning again due to the careless handling of my care and therapy package by the PCT. This makes me very angry and it also makes me feel worthless and like I am a burden to society. I then had to have a meeting with some representatives of the PCT, during the time of this meeting I had moved from the nursing home into my own bungalow. It was decided at this meeting that my therapy should be reduced from five times a week to 3. I asked for this in writing. After speaking to my neurological physiotherapist I discovered that she had advised keeping my treatments to 5 times a week but this was ignored by the PCT. I decided to complain about the decision made by the PCT, and I was first told incorrectly how to go about the complaints procedure. After some phone calls we discovered the correct procedure for complaint and proceeded to follow it. After this I was then informed that my treatment would now no longer be at the private clinic but would now be at an NHS Centre. My private physiotherapist told me that I did have good potential to make more of a recovery. My new physiotherapist has told me that I have no hope and that I may as well stop dreaming about being able to do things like walking. I know myself that it is possible. But of course it will be impossible without the treatment. I am now only getting physiotherapy three times a week. I have two sessions in an NHS Centre during which the therapist just stretches me a bit. It is all very passive and I think that it is pretty much useless. I don't think I benefit from this what so ever. I do have one other session of physiotherapy on a Saturday off the private clinic in my own home. I have two physiotherapist's during this session and what they do is stretch and mobilise my muscles and also we do some weight bearing on my legs. In my opinion it is a lot more awkward to run these sessions in my home. It would be easier if it was in a clinic with equipment such as plynths. I had no idea why the PCT decided to move me. But I do sometimes think that it is because of money. Do I really deserve to suffer because of money? I have the potential of getting a lot better than what I currently am. I had no chance of this unless I am given decent therapy which I am not being given at the moment in time. I do not understand why the PCT believe that they can put a timescale on a person's recovery. Recovery such as mine takes a very long time. Patients such as myself can sometimes plateau for awhile and then they can recover some more. Because I did not make the recovery that the PCT would like I have now had the opportunity to take it away from me. I had been sentenced to life in a wheelchair. I would like the people who sit on these boards making these decisions of taking therapy away from people to put themselves in our situation. I would like them to spend a day in my shoes or at least take the time to meet me. I believe that this happened and that they would soon change their minds. Rather than making their decisions from their ivory towers.

I am very angry at the moment. I am angry that I can see my chances of recovery slipping away.

If you or somebody you know can help me with either my fight against the PCT or in getting more physiotherapy or the equipment that I need please contact me. Thank you for taking the time to read this.

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

Sunday, 25 September 2011

three months in ICU!

when I first went into intensive care I was put in a medically induced coma for two weeks. This was because I had a breathing tube in my mouth and the doctors said that it would be too stressful to me to wake me up. However I was woken up when my parents visited me everyday, though I do not remember this. After two weeks the doctors decided to perform a tracheostomy on me. A tracheostomy involves having a hole cut in the throat. I am not quite sure of the positioning of it. I believe that it is just below the vocal cords. This means that you cannot make sounds with your vocal chords when you have a tracheostomy.

When I first woke up I remember my parents being there. I tried to speak to them but I could not make a sound. I was very confused because I didn't know where I was and I didn't understand where my voice had gone.they told me that I was in intensive care following the operation and that I was on a life-support machine, because I couldn't breathe on my own and that is what the tube was in my neck. I tried to ask them where my voice had gone but they didn't understand me.

I was not allowed to eat or drink because I couldn't swallow and if I did it would have ended up in my lungs. I was fed and given water through an NG tube.which is a tube that it passed through the nose into the stomach. It is uncomfortable. Even though I was getting all I needed through the NG tube I still felt really thirsty but I was not allowed to drink. I had water put into my mouth and then suctioned out. I tried to hide some water in my mouth but the nurses were well aware and used to that trick and it did not work.

Because I had no strength I could not cough. Because of this I had a build up of mucus (gross I know) in my lungs. I had to get this suctioned out a few times every hour. However I still developed double pneumonia.and both of my lungs collapsed. I was treated well for this. The medication that I was on was really strong. The morphine gave me crazy hallucinations. Apparently the strength of morphine I was on a similar to heroin. I have no idea why somebody would want to give themselves hallucinations willingly! The hallucinations that I had were very scary and confusing at the time but now seen silly. I dreamt that there were pink tigers and children with pink guitars dancing around my bed to music like on any merry-go-round. I have no idea how long I had these hallucinations for but they eventually stopped.

I was the only person in the intensive care unit who was awake. Everybody else was in a coma. Because I was awake the nurses found me a television to watch to help with my boredom. The boredom is probably one of the worst things about being in hospital. It was great having a television or being unable to speak I couldn't tell people what channel I wanted on. My mum told the nurses that I liked animals, especially horses. The nurses then thought it would be a good idea to put the racing on for me. Which I did not appreciate! I also remember waiting for casualty to start on BBC1. Just as I was about start watching it one of the nurses switched it over and said that they could not watch it because it was unrealistic and that they were sure that I had had enough of hospitals without watching it on TV. I did get to watch Britain's got talent though. And that was okay.

Another memory that is not nice that I have of ICU is when a man in the next bed to me died. I remember or the nurses and some doctors rushing over to him and treating him. They closed the curtains around him to give them privacy. I could hear his wife screaming and crying and that was quite traumatic.

I did appreciate the visits I had on my friends and family. My aunties came up from down south to see me and I was really made up. Certain ones of my friends came in everyday. They know that they are and I love them very much and really appreciate them. It was visits from my friends and family that made my time in ICU bearable. The nurses were also lovely. They helped me deal with my boredom and anxiety. They helped me feel less frightened. It is amazing the small things that made life easier. It was great when I was finally allowed to have ice pops and ice cubes. And also when they changed my NG tube to a peg Tube which is a true that goes directly in to the stomach through a hole in the abdomen.

I was starting to be able to communicate with people. Quite a lot of people have learned how to read my lips. And also the nurses had an alphabet Chart that I could spell out what I wanted by nodding my head. It was very frustrating and long winded but also such a relief that I was able to communicate. As I was getting stronger with my chest, I got shown a valve that would enable me to use my voice. It worked. I was made up. But it did take a lot of effort. When speaking I sounded like Stevie off Malcolm in the Middle. I was only allowed to use the valve for 10 minutes at a time. As it took a lot of effort.

I was now moved to the high dependency unit as I was getting better. The pressure was gradually reduced my ventilator and I was breathing on my own. Unfortunately I then developed an illness called C diff. I am not quite sure what it is. But it is caused by being on a lot of antibiotics. It is highly contagious so I had to be isolated. And when peoples came to see me and they still had to wear aprons like they did when I was in intensive care and if they touched me had to wear gloves. Eventually I recovered from the illness and I no longer required a ventilator. I was moved up to the normal wards. And that is the story of my time in intensive care. It was a horrible way to spend three months. Luckily I can't remember much of it because of all the medication I was on. I do remember my friends and family visiting and all the amazing care that I got off the nursing staff and doctors. I really appreciate all them people and I love them all loads and I have not named anybody because I am scared that I will miss somebody out. But them people who took the time to come and visit me know who they are and should know that I really appreciated it. Hope you enjoyed reading this blog. Sorry for the terrible grammar. I shall blame my dyslexia and the fact that I had an operation on my head.lolx

Friday, 23 September 2011

first blog. Emily in a nutshell.

hello this is my first blog. So I apologise if it is rubbish though that would be unlikely with me being so awesome. I will start from the beginning from when before I ill. About three years ago I was fine other than having constant headaches. I lived in Anfield on my own with my lovely dog Harvey. I worked full-time in a pet shop which contrary to popular belief I did actually like. (There was one thing that I didn't like about that job, but that is not what this blog is about so we shan't go into that) I had to leave the job for a reason that the shan't go into but I was also getting terrible headaches and had started to get numbness in the left side of my body. I went to the doctors over it but they just told me that I had migraine and there possibly be anything else wrong with me because I was too young. The headaches and other symptoms were getting worse and worse. So I changed my doctors surgery. At my first appointment in my new doctors I got referred to the neurology hospital. But unfortunately the poo hit the fan before I had that appointment.I haven't been feeling too well so I went to my Mum's house for some sympathy. It was there that I had a grand mal seizure.I got taken to hospital in an ambulance. After some tests including a CT scan which came back clear I was sent home. I noticed when I got home that I could see something floating around in my eye. I booked an appointment at the opticians. A few days later I had my appointment. The operation looked in my eyes and advised me to go to St Pauls at the Royal because my optic nerves were really swollen. I asked him if he was sure and if that was possible that my optic nerves were just fat. He just said that I should go to the hospital. After going and getting examined by a specialist Docter I was sent to the neurology hospital. I had to stay in. I had lots of tests done. Finally, I had an MRI scan. It was then that they discovered I had a brain tumour. It was 10 March 2009. I had the operation to remove it on 13 March 2009. I recovered from this operation well and seven days later I was sent back home. I was okay other than being a little weak. After a few days I started feeling ill again and after collapsing I was sent back to the hospital where they discovered that I had bacterial meningitis. I had a drain put into reduce the pressure. They then did another MRI scan where they discovered that my tumour had returned. After the removal of this I was left in intensive care on a life-support machine as I was unable to breathe. I was put in a medically induced coma for a fortnight. They then performed a tracheostomy and I was woken up. I was in intensive care for three months. I was unable to speak because of the tracheostomy and that was really difficult. I was moved to a rehab unit and I was there for eight months. I will go into my time at rehab in a future blog as there is a lot to say. The rehab unit got me to a really good stage of recovery. They even managed to walk me with assistance across a room. I was discharged from the unit into a nursing home. It was a horrible place. It was dirty and the care was terrible. I was pretty much left in a bed with no therapy for three months. I will also go into my time at this horrible nursing home in a future blog as there is a lot to say. Eventually after a lot of letterwriting and fighting I got given nine months of physiotherapy. During this time of physiotherapy I moved out of the nursing home into my own bungalow with my friend/carer. My care was now good. I now have two carers who are fabulous who come in of a morning to assist me with my personal care. In April 2011 my physiotherapy got cut . In my opinion it is because of funding. My physiotherapy was reduced from five sessions of private physio to 2 sessions in an NHS physio unit. And that is my life in a nutshell. I will go into more details in future blogs. Hope you enjoyed reading. :D x

I just thought of another paragraph as I have realised there is a bit I have forgotten. Before I had my tumour removed. Before they even knew I had a tumour. I had a shunt fitted. This is a tube that goes from my brain into my stomach. I have scars are my head and on my tummy from this being fitted. It is there to drain any access fluid from my brain into my stomach. This is because I have hydrocephalus or water on the brain what ever you want to call it. I also have another shunt. I am not quite sure what this one is that there for maybe I should ask my brain surgeon next time I see him. I do have the scars to prove it though. There is a possibility that the shunts can get blocked. I hope that mine are not. But I have been getting migraine again. This worries me. I have had an MRI scan lately and I am waiting for the results. I had to be knocked out when I have scans because of my claustrophobia, but it is just more scary not knowing and waiting for the results.