As you can probably tell, I am no writer. I don't even remember why I started this blog, and I haven't wrote in it for a few years, but I thought it was about time that I wrote at least something!
So maybe I'll start again, this time by writing a few things about myself:
30 years ago I was born with a rare disability called Arthrogryposis Multiplex Congenita (AMC). Basically, this means that my joints are extremely stiff and my muscles are weaker than average, the muscles also pull the joints into curved positions. This condition is something that happens to the baby whilst it is developing inside the womb. There isn't really a known cause, but one of the theories is that there just isn't enough space inside the womb for the baby to move around, so the limbs don't develop properly. Some people only have their upper limbs affected, others only their lower limbs, and then people like me where it affects all four of their limbs. Most people who have AMC are able to walk, or at least stand, but I've never been able to do either, so I'm the lucky owner of an electric wheelchair which I use full-time to get around. AMC is a non-progressive condition, joints can always get stiffer and movement can be lost completely, but it is not life limiting.
So maybe I'll start again, this time by writing a few things about myself:
30 years ago I was born with a rare disability called Arthrogryposis Multiplex Congenita (AMC). Basically, this means that my joints are extremely stiff and my muscles are weaker than average, the muscles also pull the joints into curved positions. This condition is something that happens to the baby whilst it is developing inside the womb. There isn't really a known cause, but one of the theories is that there just isn't enough space inside the womb for the baby to move around, so the limbs don't develop properly. Some people only have their upper limbs affected, others only their lower limbs, and then people like me where it affects all four of their limbs. Most people who have AMC are able to walk, or at least stand, but I've never been able to do either, so I'm the lucky owner of an electric wheelchair which I use full-time to get around. AMC is a non-progressive condition, joints can always get stiffer and movement can be lost completely, but it is not life limiting.
(Here is a photo of me, so that you can see how my body is affected by AMC.)
When I was born the doctors told my mum that I would never do anything, I'd never even sit up or speak, but look at me in that photo sitting up! And guess what? I can speak too! There are a lot of things I can't do though, and when I say 'a lot' I mean almost everything, but I have a great family, a great full-time PA (who is also my sister), and a great care company, who all support me with my day to day living.
I require assistance (when I say 'assistance' I mean someone has to do it all for me) with all aspects of my personal care including washing, dressing, feeding, and I need to use a hoist to transfer from wheelchair to bed, etc. The things I can do by myself include driving my electric wheelchair, using my computer (once it is turned on), using my mobile phone (once it is velcroed to my wheelchair armrest (I use loudspeaker to make calls)), using the remote control for the TV (once the remote is put in reach of my right hand), and gaming (once my custom gaming controls are put in place).
I require assistance (when I say 'assistance' I mean someone has to do it all for me) with all aspects of my personal care including washing, dressing, feeding, and I need to use a hoist to transfer from wheelchair to bed, etc. The things I can do by myself include driving my electric wheelchair, using my computer (once it is turned on), using my mobile phone (once it is velcroed to my wheelchair armrest (I use loudspeaker to make calls)), using the remote control for the TV (once the remote is put in reach of my right hand), and gaming (once my custom gaming controls are put in place).
Which brings me onto explaining more in depth about some of the things I enjoy doing:
Volunteering - I volunteer for Caudwell Children, in their main office, doing design and illustration. Each year Caudwell Children take 25 children with life limiting illnesses, along with their families, to Florida. This is a once in a lifetime trip which happens at Christmas time. And it's my job to put together the memory book which goes out, a year later, to each family that went on the trip. I really enjoy doing this, it's my baby, and I always make sure that the book is perfect before it goes to print! It's hard for me to get a paid job as I'm unable to sit in a workplace for long periods of time and not be able to use the toilet, etc. but I feel the need to do something, so I volunteer! My sister drops me off and picks up using my wheelchair adapted vehicle and my work colleagues support me by turning on the computer and giving me drinks whilst I'm there.
Seeing friends - Everyone enjoys socialising and that is no different for me! My sister will either drop me off and pick me up from friend's houses, or she'll come with me to assist if we're going out, for example, to the cinema or out for a meal.
Cinema - I am a huge film buff and me and my sister can be found at the cinema at least once, sometimes even twice a week, if there are some good releases out!
Theatre - Me and my sister love a good show and we go to the theatre a few times a year!
Music - I enjoy all kinds of music and going to concerts. My favourite music artist is Bruno Mars who I've seen 3 times in concert so far, the last time in April with my sister.
Reading - While I can't physically turn the pages of a book, I have the free Kindle app on my computer and on my phone which I read ebooks purchased from Amazon on.
Gaming - In 2015 I had help from a charity called SpecialEffect who put together a customised gaming setup for me to be able to play Xbox One. Since then I have also acquired a PlayStation 4 which I also play! I won't go into too much detail about this here as I think it deserves its own blog post!
Travelling - I haven't done as much of this as I'd like to, with air travel not being very accessible, etc., but I have been to quite a few different countries, mostly with family/friends and with school and college trips. The last place I went to was Florida in 2014 with family, and the next place I'll be going to is around Iberia on a cruise in June 2018! This will be my first ever cruise and I've recruited my sister and my cousin to go with me. Since booking it, one of my best friends (who is also a full-time electric wheelchair user with similar needs to mine) has booked to go on the same cruise with her mum and dad, so excited!
Well, I think this sums me up pretty well so I'll stop here before you get bored of me going on! In the posts to follow you can expect anything and everything, so stay tuned! Or not, I mean it's up to you whether you want to continue reading my blog, isn't it? But, do it! Please? :-)
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Cinema - I am a huge film buff and me and my sister can be found at the cinema at least once, sometimes even twice a week, if there are some good releases out!
Theatre - Me and my sister love a good show and we go to the theatre a few times a year!
Music - I enjoy all kinds of music and going to concerts. My favourite music artist is Bruno Mars who I've seen 3 times in concert so far, the last time in April with my sister.
Reading - While I can't physically turn the pages of a book, I have the free Kindle app on my computer and on my phone which I read ebooks purchased from Amazon on.
Gaming - In 2015 I had help from a charity called SpecialEffect who put together a customised gaming setup for me to be able to play Xbox One. Since then I have also acquired a PlayStation 4 which I also play! I won't go into too much detail about this here as I think it deserves its own blog post!
Travelling - I haven't done as much of this as I'd like to, with air travel not being very accessible, etc., but I have been to quite a few different countries, mostly with family/friends and with school and college trips. The last place I went to was Florida in 2014 with family, and the next place I'll be going to is around Iberia on a cruise in June 2018! This will be my first ever cruise and I've recruited my sister and my cousin to go with me. Since booking it, one of my best friends (who is also a full-time electric wheelchair user with similar needs to mine) has booked to go on the same cruise with her mum and dad, so excited!
Well, I think this sums me up pretty well so I'll stop here before you get bored of me going on! In the posts to follow you can expect anything and everything, so stay tuned! Or not, I mean it's up to you whether you want to continue reading my blog, isn't it? But, do it! Please? :-)
Follow me on Twitter and Instagram!
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