Can't believe it's August already!

Hello, I really need to get back into this blogging thing, it's been ages since I last wrote, (nearly 7 months) and  I enjoy it and find it quite therapeutic. Sometimes I just don't know what to write about. I have not been up to much of late, just the usual. Being visited by my lovely friends, wishing a certain friend would visit, but she lives far far away in New Zealand.I think I will write a post about the year she spent over here with me. I have also been spending too much money online, I have become addicted to subscription boxes, mainly geeky based ones and I still have my obsession with Yankee candles. Maybe I should write about that also. And I also read a lot online, mainly newspapers, especially articles that affect me as a disabled person. Some of them get me ranting in the comments section. It is quite stress relieving and it feels good to get my opinion across and get my voice heard. I have read in other blogs written by disabled people and disability groups and advocates about them sharing their opinion on these current affairs that affect us and our community. I think it would possibly be a good thing for me to blog about also. It is important to get serious, sometimes. So yeah, I am going to start blogging again, (definitely this time) . It time to stop being a lazy bum and wasting time sat on Facebook and YouTube, (even though they are a great boredom reliever) so I hope you come and catch up with me soon. See you later, I'm off to drink coffee, (unfortunately decaf ) and watch crap on YouTube. Just wait till I discover Netflix. :P

So I went outside…

So I managed it. After much encouragement, a bit of bullying and some blackmail, I managed to leave my house for the first time in about six months. Unfortunately it was not for anything exciting, it was just for my six monthly review with my neurologist. (Thrilling, I know) but seriously my neurologist Mr May is such a nice guy, it was worth the effort.And a lot of effort it was.

It was quite surprising after not leaving my bungalow in such a long time, how scary it was and also how much work it was. I have to prepare the night before by taking a diazepam before a go to sleep and taking another one in the morning, to help with my anxiety. Even now I have taken the medication I still feel really panicky with lots of scenarios running through my head. I am also nervous about the inevitable pain that I will have to go through. I am such a big wuss with pain. These days, and struggle to cope with little things such as being hoisted and sitting in a chair. Although weirdly, I am completely fine with having my legs waxed! I will fast forward a bit, because I know I am being incredibly boring and also you do not need to know all the details of personal care, etc

Luckily the hospital is only five minutes down the road in a taxi. The main thing I dislike about taxis is the access ramp for wheelchairs as somebody has to push me up this and I feel like I am a really heavy blob (think Jabba the Hutt with pigs tails) once in the taxi. I need to make sure my carer is holding my chair, steady and the cabbie drives carefully otherwise I am at risk of falling not so gracefully arse over tit out of my wheelchair which tends to leave me rather pissed off. Luckily this did not happen because my carer was awesome.

Even though I was late to my appointment I did not have to wait long to see my consultant. He said he was really proud of me for making the effort to attend the appointment because he knows how difficult it is for me to get out and about. Sounds patronising but it really wasn't. The appointment went well and I don't need to see him for another year. As usual, I forgot to ask some of the questions I had. One of them was extremely important, as I am sure some of you will know. I wanted to ask if I would be able to have normal coffee again as I have been stuck with decaf for months and as everyone is aware that not even coffee, it is just bleh!!

New year, new start. (Yes I know I am a month late!)

Hey there! Well it's been absolutely ages since I have written anything on this blog, so I have decided to start doing it again and doing it regularly. Mainly because people have been asking me to and also because it is probably good therapy for myself.
So, what have I been up to? Well, nothing much. I have unfortunately not found a magical cure for my paralysis, nor have I won the lottery. My wonderful kiwi carer had to go back to Zealand because her visa ran out and apparently you can only get it once in your lifetime unless you happen to be on the skills shortage list, (such as an engineer) , you have ancestry, (your parents or grandparents are British), you are married to a British person or somebody with British ancestry or I believe you can buy your way in. (A sponsor). As she had none of these, she had to go back to the beautiful country of New Zealand. Which was devastating for me and her. So now I have nobody here to come up with practical jokes to torment my visitors with. (Seriously, it is absolutely amazing how gullible some people are, lol.)  And also because she really help improve my quality of life by encouraging me to get out and enjoy myself, I know people do this too, but I felt really safe with her as my carer to look after me. Whilst I was out. I have also gained yet another feline member of my household, this one could be described as quite moody and probably evil. I have also most definitely gained a few  lbs, as I have rediscovered my fondness for pizza. (Margarita, yum!)

Generally I have not been up to much. Mainly because of my anxiety and depression. I am too worried to go outside and do things. I panic that something might happen and that I might get hurt. This does not help when other people who are out and about, walk into my chair and it is either quite painful, or I am fearful that I am going to be knocked out of my chair, which has nearly happened a few times. I really don't understand how people can't see me, it's not like I am invisible or something. And the worst thing is, is that they don't even apologise to me. They will either ignore the fact they have almost knocked my chair over or they will apologise to my carers. (Which I guess it's better than nothing). This is just one of the many things that cause me to be anxious when I leave my home. I have not left my house in about six months. I know this isn't good, and I have probably made my anxiety and depression worse, By staying in and not trying to fight it. I hope some of you will continue to read my blog as I carry on learning to cope with my disability and try and fight my anxiety and depression. I'm sorry this post was pretty rubbish. I will try and do better with my other posts!

Carers.

long-time, no blog. I guess I thought I had nothing to write about when in fact I do. I have a few new posts to make! This is the first one.

One of the most important things in my life is my carers who assist me in everything, without whom I would be in a nursing home, which is not the ideal living situation for me. I am so happy I have fantastic carers and I am really grateful for the help they provide. Carers have had a lot of bad press lately and I think it is unfair as there are a lots of carers who provide excellent service to many people within the community giving them the ability to live in their own homes. And these hard-working people are undervalued, underappreciated and most definitely overworked and underpaid. The people who are providing care to our elderly and vulnerable people in our society should definitely be earning more than minimum wage for what is often a thankless job with long hours, heavy lifting and often dealing with unpleasant things. Lots of people complain about carers, yet would not do the job themselves! Bit hypocritical really.

I think it must be really difficult to be a live in carer/personnel assistant, which is what I rely on. It must be really difficult to go to a person who you have never met before to look after them and live in their house. How hard must it be pretty much be on duty 24 seven for a set amount of time, sometimes as long as a few weeks.
I really appreciate that there are people willing to do this. Quite often these people are from eastern Europe or from the backpacker community but I don't see how this matters as they are excellent carers who are extremely nice people and very hard-working. I have read on disability websites about people complaining about these care workers, moaning about them being foreign, and I myself do not understand how this matters. What difference does it make, where somebody is from, surely this is a bit racist! I have also heard people complaining about how they do not get any consistency with carers. Well what do you expect if you do not treat them in a respectful manner, and do not give them a moment to rest. They are people not robots! And just because they are counted as your personal assistant it does not give you the right to speak to them like they are your slave. I never have any problem with consistency of PAs, because I treat my pas decently and respectfully. I tend to get on really well with them because they are usually roundabout my age and we have to same kind of personality and we have fantastic talks and watch films together etc. I really appreciate the work they do.

I am extremely grateful to all of my carers as they helped me come so far, regaining my strength and confidence. Hopefully soon when my new wheelchair is here I will be able to go outside again. And I am looking forward to it. Obviously I will need my carers to help me with this and I know they will. I definitely appreciate all the girls and boys who have worked with me now and in the past. They have made a great difference in my life.

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

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.

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.

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

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

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

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.

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

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!

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 www.ainsdalehomehelp.co.uk as they are absolutely fantastic. :)

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

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

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

and another week passes

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

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

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

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

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

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

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.

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

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

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.