Did you know that I can't walk unaided? Well... July 14th is Disability Awareness Day, and Nichrysalis
has put together a journal
which is well worth a read, where you can share your own experiences and have your voice heard, as well as share in others. So, I figured I'd share my story too.
But first, I want to introduce you to someone I find extremely inspiring. His name is Spencer West, and despite his physical disability, he lives his life without limits. If you want to be inspired, read his story, here: www.dailymail.co.uk/news/artic…
So - my own little life. My name is Leo, and I'm this happy-go-lucky 27-year-old dude living in England. I have a very happy life, married, expecting twins in October, relatively healthy, nice family and friends, but I will admit its taken me a while to get to this point of being 'alright' with my situation.
Since childhood - as early as 6 years old, I believe - I've had problems with my joints. It didn't resrict me very much at all, I was just aware of them sometimes. I was taken to see a doctor, but it was decided that everything was fine. I carried on in the same way, just being vaguely aware of my joint aches here and there, until I was aged 20, when I had a heart attack, and was dead for 3 and a half minutes. Then it was discovered that I also had heart irregularities - Cardiovascular Disorder (Chronic Heart Disease) runs in my family, and has so far claimed the lives of my father, his father, and his father before him. It was assumed for a few years that this is what I have, though it's actually not, but I'll get to that in a minute.
Between the ages of 16 and 21, running and fitness were two of my favourite things. I'd go for a run every morning, do 50 sit-ups, 50 press-ups, weights and cardio - loved it. I also owned eventing horses, and I (with friends) participated in various cross-country, racing and team chasing events (not the major ones, just small local ones). I had an awesome jet black TB stallion, 17.2Hh, and an absolute nutter, his name was Sim, and when he was a yearling in training, he broke my ribs <3 However, while I was running, or riding, I found that I was getting worse pain in my joints - particularly my knees - and I couldn't go as far as I could before without needing to stop and catch my breath or take a break to rest my legs. I was starting to feel... weak, for lack of a better word.
For someone so proud of their body and ability to keep fit and show off my muscles (and yes, I showed them off at every opportunity
) it was frustrating to feel this way. At first, I tried to work harder, but that just ended in my muscles aching for longer, and feeling stiff the next day, which was unusual for me, and made it even more frustrating.
Age 21, I finally sought a medical opinion. They couldn't figure out my problem at first, which made it worse for me, because without some kind of name to put to it, like "this is the reason", I just felt weak, and like I was making a deal out of nothing. I was sent to a specialist, who tested the strength of my arms and legs, and listened to what I had to say, and checked my heart rate. Then he told me that I may have 'some sort of muscle wasting disorder', but he wasn't sure, it could be psychological
and could I go back in three to six months for a second check.
Do you know how annoying it is to be referred to different places, having to wait at least a month for appointments each time, just to then be told that they don't know, and you need to wait more months just to know why you're aching and verging on being in pain all the time? Do you know how annoying it is to be told that perhaps your very real discomfort is 'possibly psychological'? I'll tell you, its very annoying.
So just under five months later, I had my second appointment, where I was fully tested in the same way as before, and then asked to go and sit in the waiting room for a few minutes. Said few minutes turned out to be nearly an hour.. I was called back in and told that my arm results were roughly the same as last time, but that my legs - despite my frequent exercise - had weakened, and this in addition to the heart results, and my complaint of aching/painful joints in my knees, ankles and elbows pointed to something they called Emery-Dreifuss Syndrome
. This is a type of Muscular Dystrophy - muscle wasting - and it meant that my days of being able to go running and horseback riding were numbered. This is also the reason for my heart problems, which are now fully under control thanks to the correct medication.
That was May 2007. In July I underwent surgery on my knees, because a problem with one of them was making it worse for me, and giving me more pain and discomfort. I had a metal splint put in to stengthen my leg as it healed. Things got better for a while after that, but not for long, really.
About eighteen months later, things went downhill. I had to sell my horses, which sucked because I'd had Sim from a foal (his mother belonged to my mother) and helped to train him, but I couldn't ride anymore and the lack of regular exercise really wasn't fair on him. I couldn't run anymore, but I was making sure to get regular long walks. I'd told myself that I'd be fine, and I could do whatever I wanted to (which helped my morale, but wasn't physically true, really...)
For a couple of years, I was fairly depressed. I didn't know what to do with myself, or my life. I'd always been an active person, and enjoyed living an active life, and none of my career choices really fit with my abilities anymore, and I felt quite lost. Luckily for me, I have someone in my life who is always around to help me find myself, and reassure me when I feel down, and tell me that everything is alright. That would be AwsumZ
, of course - the light of my life.
I've done what I can to maintain movement, and I still go for walks today, but I can't go very far and I need to use a walking frame. If I'm going out for the day, I'll go in my wheelchair (which, by the way, is metallic purple
) because my legs can't hold me up for very long. As I said at the start of this journal, I'm okay with it now, but its definitely taken a while and it's been a struggle. I'm actually very lucky in my disorder, as it so far has only really affected my legs rather than my shoulders/upper arms as well. That part may come in the future, but for now I'm doing well, and I'm very positive about life. I have regular physiotherapy which keeps me moving, and I plan to prolong my mobility for as long as I can get away with it!
My mother has recently given me info about a specialist riding stables, who often cater to those with physical disabilities, so I may even be able to get back on a horse at some time in the near future. Epic.
So, from me to you... live your life without limits, stay positive, and always remember that the word 'disability' doesn't have to mean that you don't have the ability to do the things you want to. Read all of this? Have some cake.