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!!

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.

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