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!!

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.