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Tuesday, 27 September 2011

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

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

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

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

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

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

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.