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!

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