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Thursday, 4 October 2012

what I have been up to.

I have not been too much since leaving hospital. I am glad to be out, it is nice to be in my bungalow. I am feeling really lonely. I am having a live in carer/ P.A which is good but it is not the same as living with my friends which is what most of them are doing at the moment and I feel left out. So far I have only really got on with one of my P.As. she is lovely. The other ones have been nice but we just didn't bond. hopefully I will get some other p.a's that I get on well with. I am sorry that this writing isn't very good my microphone is playing up.

I spend my days on the Internet in my bed. I am still not getting any physiotherapy and I am waiting for it to be sorted out. I am trying to raise money to get myself some physiotherapy sessions or some equipment such as a standing frame. I am not sure whether it is selfish to try and get myself things such as this, I do think that I deserve the opportunity to get my self at least a little bit stronger. And then I would be able to do things such as go out with my friends rather than being a prisoner within my own home and body which I am at the moment.

I need to set my self some goals. Does anybody have any suggestions what they could be. I am stuck for ideas as I am getting depressed again with being stuck in this rut. It is just the same routine every day. Lying in my bed on the Internet or watching TV or films. I get visits off my friends quite often which is the highlight of my week. I don't think they realise how much they help me to feel better. It is wonderful catching up. Does anybody have any suggestions of what I can do to fill my days as I am beginning to get depressed again. I am also terrified that I will end up being stuck in hospital again. I am going to women's Hospital on Monday to get some checks done on my bladder. I might end up getting a different kind of catheter called supra pubic catheter. It basically goes through my stomach wall in to my bladder and it is much easier to maintain. It is also reversible. Not that you want to know about my bladder. Lol. I am a bit worried about going to the hospital as I think I have developed a slight phobia of being stuck in one again. I know this won't happen as it is only a one hour appointment. I can't wait until it is over and done with. I am nervous waiting. I have got to go in a stretcher ambulance as I am not yet strong enough to sit in my wheelchair.

I am thinking about writing a book. Do you think anybody would be interested in my life? I have got a lot to write about and one of my very best friends who I love very very much is going to help me do it as she is an author. I am going to write about everything that has happened from even before I got diagnosed.

I have still got quite a few blogs to write about my time in hospital. I was therefore quite a long time and loads happened. I should have really written them when I was there but it was difficult because I was always in a room with other people some of whom writing about. I am sorry that this post isn't a very good one it is just very rushed and I am feeling down at the moment. Anyway I hope you enjoy reading it and I would appreciate if people could message me or comment on with things they would like me to write about in my book/blog.x

Saturday, 15 September 2012

long-time no blog

so it has been a very long time since I last wrote. And my plan is to start writing regularly again. I was stuck in hospital for five months after having a kidney infection and pneumonia which left me in intensive care. I was in a coma for 2 1/2 weeks and I had crazy dreams during that time. I know hearing about other people's dreams it's very boring but I just thought I would tell you about mine during my time in ITU. First of all I was convinced I was turning into a cat I had no idea why. When I came round from a coma I thought that everybody I knew was moving to Huddersfield and I couldn't go because I had no shoes with me. I'd used to get really upset when everybody was leaving because I thought they were going to Huddersfield and never coming back. Luckily for me they all did. I was in ITU for about six weeks. I had a tracheostomy and I was on a ventilator so I was unable to speak and was not allowed to drink or eat which was very frustration as I felt really thirsty. When my visitors use to come in to see me I used to beg for them to give me a drink even though I wasn't allowed to. The only thing the medical staff would allow me to drink was a bit of water from sponge soaked in water. It was a bit of relief but it was not really enough to quench my thirst. I wasn't really thirsty I just thought I was. I was getting enough fluid through my drips. Another thing I remember from ITU is another patient screaming and shouting because he had just been shot. He was a criminal or something. And this was not a dream it did actually happen. He was eventually put in a side room with police protection because staff were concerned that somebody would come and try to finish him off or something.

I was in ITU for about six weeks. I was then moved on to a ward called the VIC I have no idea what this stands for. It was Ward 19 and I was only there for a couple of weeks. The staff were lovely and really kind and friendly and funny. I was still getting some ventilation whilst on this ward as I still could not breathe unaided. I was being weaned off the breathing machines and I remember using equipment such as a C pap and a Swedish nose. One day when I was on this ward they had a special day called arts in Aintree and they had a lady coming in to help patients do painting and I did some. I have still got a painting that I did. It is of a hillside and it is in water colour. They even laminated it for me. I suppose I did not really do it myself as I am quadriplegic. They helped me hold the paint brushes and assisted me in moving my hands to do the painting. Another thing that happened the day was a young man came in with a guitar and sang for us. He sang some Oasis. It doesn't sound like much but little things like this really help when you are in hospital for a long time. I suppose it was okay for me as I had my laptop and I was able to go on the Internet and watch DVDs etc. After a few weeks I was moved on to Ward 22.

well I was on this ward for three months. I was only meant to be on it for a couple of days whilst they sorted out my care package. I was placed in room eight and I was in this room for two months. This room was the crazy room! It was right by the nurses station. I was put here because I could not press the nurse call button and it was easy for the nurses to see if I needed any assistance. This was all right. The only downside was that I was also in a room with people who had dementia and Alzheimer's. It was quite stressful as they were shouting and screaming and also singing all the time. Quite often they would get up and go for a wander. Some of them jumped into bed with me. They would also say the strangest things.
such as singing songs about going to the toilet. Calling each other liars and thieves. Saying bizarre and slightly racist things to the doctors and believing that teddy bears where babies. I will write more in depth blog about these ladies another time.
I was stuck on Ward 22 or three months whilst my care package got sorted out. Every time it was about to get sorted out it had to get sent back to panel. Panel is where they make decisions on costings etc. I wanted to have the care package I had before it went in which was my direct payments but without Tony looking after me because he had already moved out and social services did not want him looking after me. I was told I couldn't have direct payments but I was not given a reason. I really wanted to have Dawn looking after me as she was the best person for the job in my opinion. Hopefully I will be able to in the future some time. I miss having her look after me loads. Every time I thought they had reached a decision it got bounced back to panel again and again because of the expense. They were trying to find the cheapest option. I can't believe it took three months. I was getting more and more upset as I wasn't getting to see my friends and family as much as I want it to and I was unable to get showers as they didn't have the equipment so I just used to have  bed baths all the time which meant I couldn't have my hair washed properly. I found that quite distressful. I also found it stressful being in a room full of ladies with dementia etc as it was quite upsetting for me. I know it was not their fault. The only good thing was that I was getting some physiotherapy which help relieve some of my pain. I got my medication increased also. Eventually they moved me into another room in which the ladies did not have dementia.. I was in this room for a month and then finally I was sent home.

The care package I am now under is to have a full-time PA living with me. They are from a company based in London and so far apart from one girl had been lovely although there have been some language barriers with some of them. I also have five drop in calls a day from another company to assist the PA when two carers are needed to assist with moving me etc. I am still not getting any physiotherapy and I am going to start fighting to get some as I believe I deserve it.

I am starting to get depressed again as a thought I would be happy when I came home. I am a lot happier than I was when I was in hospital which I suppose I should be grateful for. I am really worried that I am going to end up back in hospital and that I am going to end up in a nursing home. I am also worried that I am not going to regain any more movement than that I am going to lose more of my friends. And what will happen in the future when my friends start getting married and having kids etc. I really hope they will still come to see me and I know they probably will. I am selfishly thinking about myself. What is going to happen to me. Will I ever meet anyone for myself? I really hope I do as I don't want to end up alone. During my time in hospital I saw so many people who wear alone and I'm terrified I am going to end up that way. I know that is a selfish thing to think as there are all the people who are in much worse situation than me. I am feeling depressed right now as I am writing this post I just don't see any light at the end of the tunnel. Maybe if I get some physiotherapy and will feel much better. I also think I need some more counselling. My writing does help me and I have been told that it helps other people as well and I really hope it does. Anyway I think I will finish it here and I hope some people read this. Thank you for taking the time to read.

Monday, 11 June 2012

the past three months part one

I have not written a blog in ages. It is not because I have been lazy. I have been stuck in hospital for the past three months. I am okay now I am just waiting to go back home. It is taking a while to sort out as I can't have the carers that I used to have as the funding has changed and only certain companies can be hired. I am not sure what it is going to be like. I think I am going to have two people a day doing 12 hour shifts. The one who does the night shift will be doing a waking night. My friend who I was living with is moving out to live with one of our friends.

So to those who don't actually know me personally you are probably wondering why I have been in hospital. Well before I went in I had a severe kidney infection. There is a slight chance that this may have been self-inflicted. I don't think so though, but I am sure some other people will probably tell you different. This went on for a few weeks. We did ask the district nurses and the doctor if I was okay and they prescribe antibiotics. This in my opinion is probably what caused my seizures which put me in hospital in intensive care and unable to breathe unaided.


Everything from this point is a bit muddled up as I was very confused. I was having a few seizures when I was still at home and when I came round I was in a highly confused state. I was having really realistic dreams where I thought I was being chased around by clocks. I know that sound really bizarre. The hospital was informed and were coming to pick me up. But then I had another seizure when I stopped breathing and the ambulance needed to be called and I was rushed into hospital. I was put on to life support and I was in a coma for a fortnight. I nearly died. The doctors informed my friends and family that my organs were failing, and that's all they could do now was to make me comfortable. But then I started to show signs of improvement.

When I came round from my coma I had in a tracheostomy so I was unable to talk and I was unable to drink even though I was absolutely desperate to. I was so thirsty. All I was allowed to do was to suck on pieces of gauze soaked in water.

Tuesday, 14 February 2012

can you give me some ideas and answer some questions, please?

Hello. Just going to be a small post. I might be writing a book about my experiences. What do you think is important for me to put in? What should I call it? I'm going to use some of my blogs to help me with my writing and one of my best friends is an author, and she is helping me to.

How can I improve this blog? Is there anything you want to know. Do you want me to stop moaning, etc. Please answer my questions. I am not easily offended I just want to improve my writing. I am going to be putting some artwork and pictures on my blog and my blog is going to get done up by a friend of my other best friend and her boyfriend is going to help me with photography. What would I need pictures of in your opinion.

Thank you for reading my blog, and those of you who have written comments. Thank you very much. You have no idea how much they help and encourage me. Especially when I'm feeling down. I will be doing a proper post, probably tomorrow. I am thinking about doing one about what I do in a normal day, such as how the carers help me. What the nurses do and so on. It may be boring, but it's something to write. Lols x

Thursday, 2 February 2012

The continuing saga of Emily's world ...

I have done a lot of e-mailing, since I last wrote a blog and I don't have any good news to report. In my opinion, the place where the PCT want to send me for therapy is not suitable. It is a facility for people who have an ABI (acquired brain injury), which in my opinion. I do not have. I am not brain-damaged in the slightest. It is my brainstem that had damage, and that is actually in my opinion, more my spinal cord than my brain. I think that I would if I needed to go into rehab unit. I think I would be better off in a spinal unit or in the NRU from which I was discharged two years ago.

I have lost a lot of my determination lately. I do not know why. I think that it might be something to do with the authorities trying to put me in a brain injuries nursing home. I am absolutely terrified that I am going to end up in a place like that in the future. It was horrible. It was like a prison and a mental health unit. I don't have a brain injury and I do not need to be treated as if I do. I do not think that locking me up with people who have dementia, etc is beneficial to anybody. For a start, who would I be able to talk to? I would probably end up hiding in my room. And on the other hand, I will be taking care away from those with dementia etc. As my needs are so complex and I need a lot of attention, which would take away attention from the other patients. If I was to go into a home, the best scenario would be for me to be with people who are like myself. Young people who are either quadriplegic or paraplegic but who are cognitively fine. Are they any places like that? Surely I must not be the only person in my situation. Surely there are some other people like myself.

So, I am really scared at the moment, that because I am turning this opportunity down that they are going to take a small amount of therapy that I do have a way from me. That is, one session of physiotherapy, with two physiotherapists for one hour and one session of occupational therapy for 30 minutes with one therapist. I was having counselling but I have now finished the sessions. If I need more in the future. I should be to get some if I go to my GP. What I would like is to be able to have my physiotherapy in a private clinic where I was going before all this crap, kicked off. Is that too much to ask? And I am a bit confused about the future. I have been getting told two different things. Some people are telling me that this is as good as it is ever going to get. And other people have told me that I do have the potential for improvement. It really upsets me because when I left rehab. I was doing great. My legs were getting stronger. I walked, for heaven's sake! I was able to do things with my arms and hands. And my neck was getting stronger. I don't want to deteriorate any more. It scares me.

I will tell you why, it scares me. I hate it. I feel like a burden I am just like a vegetable. I can't do anything what use am I to anyone. I feel like I am a waste of perfectly good oxygen. By trying to put me in a home like this. They are just trying to hide me away. They are trying to sweep me under the carpet stop me being a bother to anyone. I've tried in my e-mails and letters in fighting this opportunity to put my opinions across and everything I said just gets knocked back. I'm not going to give up. It's my life, they are playing with in my opinion. The decision that they make. Don't affect them in the way it's going to affect me. I am desperate to have more physiotherapy, but not in a facility like what they are offering. That's not suitable at all in my opinion.

Hopefully things will start looking up so. I believe that I have got some good luck coming my way. I'm still really down about having my kitten put to sleep. Hopefully in the future I will be able to get another one. There is a kitten shaped hole in my life at the moment. There has been a lot of good news around lately. For some of my friends and I am really happy for them. So many of my friends are pregnant, and that is fantastic. There is going to be a lot of babies around this year, and that is great. And some of my friends have got new jobs that are well paying. That is fantastic! So hopefully some of the good luck will be coming my way soon.

XXX

Monday, 23 January 2012

loss

Animals are very important. I lost my kitten this week, he had to be put to sleep because he was not well. He had problems with his bowels, and he was bleeding and was probably in pain. There was nothing more that the vets could do and it was the kindest thing to do for him. I am absolutely devastated. I only had him for two months but I loved him so much. He was just so cute and funny. He used to cheer me up a lot. He did not discriminate against me, he did not treat me as disabled. He would jump all over me and he would curl up purring on my knee and he would give me a little kitty head butts. I miss him so much and I feel so guilty at having to make the decision. He went into his carry box. So trustingly. He probably thought he was going out to play. I couldn't go to the vets, but I know it was quick and peaceful. My other cat Rosie doesn't know where he is gone. She is walking around the house meowing am looking for him, she has even tried to open doors and drawers looking for him. I don't know what to do to make my guilt, and sadness. Go away. It was already been a bad week, with all the crap from the PCT in my opinion.

I met up with my advocate this week, and we have written an e-mail to the PCT outlining my thoughts and opinions on the facility where they would like to send me. I hope it will all be sorted in my favour. I am doubtful about it, because things always seem to go wrong. Things have gone wrong, ever since I left rehab. When I left the rehab unit was the last time I did any walking exercises. I now think that it is too late to be able to do this again. I don't really see the point in having Hope in this as I am probably just going to be bitterly disappointed.

In refusing to go into a care home, am I just delaying the inevitable? I am never going to be able to look after myself. Again, so what's going to happen in the future? I think I am going to deteriorate more. I have been deteriorating. Ever since I left the rehab unit. Apparently, certain people were aware that this was going to happen. So why did they not tell me. So that I could prepare myself? There are so many questions, and not enough answers. I find that the meetings of my counsellor are really helpful and I feel much better after them. Unfortunately, I only have one more of them left. I don't know what to do, if I do not get offered any more. I think that I will have to increase my antidepressants. I know that this is not a magic cure, but it will help me feel a little bit better. And I just hope that I do not become addicted to them.

I have a few things to look forward to this week. I am going to the pub, and I'm going out for a meal with some friends who are not ashamed to be seen with me in public. I will also be meeting some new people, then who are friends with my friend and who have asked to meet me. I am excited about it. I have not been out in such a long time. And it will be great to go out with people who do not feel sorry for me and who don't treat me with kid gloves, and you are not coming to see me because it is their ''christian'' duty. I don't want to be the reason for someone gaining brownie points. I know that friendship is a two way thing. I just wish that people would treat me the same as they did before all this happened. They need to realise that I am not a delicate little flower, and they do not need to tread on eggshells around me they can just treat me the same as they did before. And if they didn't know me before. Treat me like they treat their other friends. Have a laugh and a joke with me. Skit, and tease me and I will do the same. I am just normal, just the same as you accept. I cannot move. You can take the piss about anything. I don't mind. Just not about my little kitteh, it's too soon.

R.I.P Little Dougie I love you loads, and I'm sorry. XXX

Sunday, 15 January 2012

fuming!!

So I finally got my reports back from the authorities. As usual, it was full of their usual crap. I was pleased at one point of it though. It said that the best course of action for me would be to go into a rehab centre for some intensive physio for a period of 6 to 12 weeks. I was really excited. This is what I had been fighting for. For over a year. Finally, I had some luck, finally, I was going to get therapy. I needed.

I had to go and visit the centre, that I would be staying in. It was not too far from where I live. It seemed okay first of all, very clean and roomy. I met with the ladies, who were leading the meeting with me and who wear to answer any questions that I may have about the facility. My first question was how much therapy, I would be receiving in a week. I got told it would be three physiotherapy sessions. This was a bit disappointing, as I had hoped it would be five. My next question was, if I would be allowed to come home at weekends. I got told that I wouldn't be able to do that, as I would need to be ''monitered'' at the weekends. And also, as I would need to bring my own bed with me. It would be too awkward for me to go home. This seemed really odd to me. My following question was to if there was Internet access available. I got told that there was thought that I would be supervised by them. If I wanted to use it. This seemed awfully strange. I asked about visiting and if I would be allowed to go out. I got told visiting hours way between six and eight, and that they would not be allowed to go out. When I wanted. this place seemed like a prison. The penny then dropped. It was not a nursing home at all, but it was a nursing home for people with learning difficulties. I can't believe they wanted to put me in a place like this. I'm so upset about it and I'm definitely turning it down. Hopefully, somehow, I will be able to get physiotherapy, and I will be able to go to an actual rehabilitation centre. Fingers crossed eh, I've got some more meetings this week, may be one of them will have a positive outcome for me.

Sunday, 8 January 2012

scared

Hello it's been a while since I've written a blog. So I thought I would write one. I hope everybody has had an awesome start to the New Year. I wish say thank you to the people who have been following my blog and who have been sending me comments. I find them really encouraging, and I really appreciate them. Also thank you for the suggestions for my blog. :)

It has been a quiet start to the New Year, so far. And after writing my new years resolution blog. I have gotten a bit down again. I think there is a possibility that I have ran out of my antidepressants, and that is why I'm feeling down. I try not to rely on them, but I can't help it. Sometimes. I want to ask my doctor. If I can have my antidepressants increased. I'm fed up of waking up every day, feeling miserable and trapped. I know, antidepressants are not a magical cure, but I think it will take the edge away. If you know what I mean. I don't want to become addicted to antidepressants though. I will speak to my GP and councillor to get their advice.

I'm nervous today, because I am waiting for a decision from social services. Regarding my physiotherapy. I am worried that they are going to reduce it even more. I think they do that. It will hit me terribly. As I will feel as if there is no hope at all. For me. When they take my therapy, away they take away my hope. I hope that my condition will improve, but if I did not get the therapy. It will not, and it will get worse. It's absolutely terrifies me that in a few months. My condition could be even worse.

The thought that I am clinging to the moment is getting a standing frame. This will help me enormously as weight-bearing is one of the best kinds of physiotherapy. I can do. If I was able to use a standing frame daily. My legs would get stronger and stronger, and maybe one day I will be able to walk again. They are expensive, though. That is the only problem. I have had offers from friends, offering to raise money for it. I think that it is a lovely idea, and I am really touched that somebody would do this for me. But I feel really selfish in accepting something like this. Is it selfish? There are people in much more need than I am and who could do with money raising for them. I have started to believe that I don't deserve getting equipment, and therapy and social services are forcing me to believe that this is the case. Sorry for moaning again, everybody, and I'm just feeling really miserable. Yet again.

The title of this post is scared. I will tell you what I am scared of. I am scared that this is as good as it is ever going to get. This is what my ''lovely'' (it's hard to be sarcastic in text). NHS physiotherapist has told me. It makes me physically sick at the thought that I will have to spend the next 40 years or so, lying in a bed or sitting in a chair. What kind of quality of life, is that? I am going to sound self pitying. Now, and I apologise for it, but if I was a dog. I would have been put out of my misery. A long time ago. Sorry. That's just how I feel. I will cheer up soon, and feel embarrassed, and probably slightly ashamed for writing this. As I have said in the past. I am aware that there is people who are on, much worse off than myself and I am grateful for what I do have. I'm beginning to sound like a broken record.

Another thing I'm scared of is my future. What does it all for me? I accepted now that I am never going to have another boyfriend. Who is going to want somebody like myself? I'm sure there are plenty of people who would date somebody in a wheelchair. But how about somebody who is quadriplegic? I'm sure there are plenty of lovely people out there, but I'm not sure if there is anybody who can see through disability such as mine. I really wish that there was. As I do want to have somebody. Even though my body doesn't work. I still have the same thoughts and feelings. I am still a young woman. You can't just turn something like that off. I wish I could but I can't. I think I will just have to sit here and watch life pass me by. I think I might do a blog about this in the future if people would be interested in reading about it. I know it is a bit of a taboo subject. But yes, disabled people still do want to be loved and have sex, etc etc.

And another thing, I am scared about. (Sorry about the appalling grammar. In this blog BTW) is, what about in a few years. What is going to happen to me. What about when my friends move on, get married and have kids. Will, I still have friends and company? I do have some good friends who I know will stick with me, as they are awesome. I do have some more so-called friends who I have known for years. It seems to me like they are avoiding me. And coming up with excuses not to see me. Maybe they are ashamed of being friends with a wheelchair person. There are quite a few people who are. They think that disabled people should be hidden away, and that we should not be allowed to go to clubs and bars and stuff. As we get in the way and make the bars look bad. It does upset me that some people, especially my friends would veiw me and people like me. In that way. Some people are just so ignorant. At least I have some decent friends and I appreciate them very much so. Even the ones who I do not see and to write to me every now and again on Facebook, and so on. I know that friendship is a two-way thing than I do contact people. I don't just sit there waiting for them to contact me.

I'm fed up of dealing with people's ignorance and callousness. I got told the other week that it is cruel. For me to own pets, because I am unable to give them the care that they need. I have people around me who give my animals. The care that they need. Feeding, cleaning, playing with and cuddling. My cats don't care that I'm disabled. They are currently cuddled up together. Next to me. I love them and they love me. I wish everybody could be non-discriminative like a cat. I know that sounds really really silly. My animals, bring me so much joy. It makes me very happy, watching them play together or just sitting next to me, giving me little kitty head butts. It makes me feel wanted.

I was brave. The other week as well. I did an interview about my condition on a local radio show. The DJ was really nice to me and really encouraging. It really helped me, being able to talk. Some of the other listeners. Even texted in with encouraging comments. For me and I found them. So, kind and confidence boosting. It's lovely to know that there are some decent people out there who will not judge me on my condition.

That was a relief, getting that off my chest. I feel a bit better now. Thanks again for the lovely comments. They have really encouraged me. I really appreciate the people who take the time to read my ramblings. If anybody has got any advice on how I can get more physiotherapy or get money raised for me to get my standing frame, please let me know. I'm really sorry if I sound selfish but I guess if you don't ask. You won't get. I will write again soon. XXX