Before I was ill, I can't remember
having any cares in the world. Or at least none that truly in the
grand scheme of things mattered. I was 16, I caught Shingles and from
there things went down pretty sharpish. My Conversion symptoms
started pretty soon afterwards, and looking back, so did my ME. I
think when I say I was one of the 'lucky' ones for it to come on
gradually, I say it with a grimace. I wasn't lucky, I still had two
incurable conditions, it just prolonged everything that much longer
before the inevitable happened.
Before I was ill, I could go out and
have fun, I had energy like you wouldnt believe. But even then I was
a quiet type of person, I was shy with others and unbelieving in
myself. When I got ill, I became a different person. You quickly
realise that you are being given a choice in life. You can either
fight it, with everything that you have. Or you can succumb to it.
And I chose the former. I was 16 when I started getting ill. I was
betrayed by my bestest of friends in the midst of it all. Something I
dont think I could ever forgive them for. But after being laid out in
a hospital bed for two weeks out of every month, I chose to fight
whatever was happening to me.
I started to change, from the shy,
unassuming person. To somebody that on somedays I wouldn't like to go
up against. When I get mad, I get mad. When I get hurt, I shatter.
But it always comes back to te decisions I made when I was 16, when I
was 17, when I was 18 and lastly when I was 19 and fighting to finish
my A-Levels. I made the conscious choice to become a different person
and it was only after I left home and went to university that the
full force of that decision hit me in the face.
I made the decision to be a self
sufficient as possible, I may be paralysed from time to time, one
year out of every 2 or 3. I may be prone to unpredictable bouts of
'twitches', that more often than not lead to a seizure and land me in
hospital for a couple of weeks. I might even be bed bound as I am
mostly now. But I made the decision to live my life like anyone else
would.
I was going to go to university. I was
going to graduate. I was going to get a job, earn a living. And I was
going to settle down and eventually have a family. Well all good
intentions as the saying goes. I am at university. I am going to
graduate, no matter what it takes me to get there. I may have already
missed my chance of having the family, but I realised something this
time around.
Life is flexible.
Life is flexible if you want it to be
and are willing to allow it to be.
I am at university, studying my
degree, but i'm at home. I am going to graduate, but i'll only be
able to be there for the day unlike most of my peers who are taking
the chance to have week long last hurrahs. I am going to get a job,
even if that job is something i have to do from home, I consider my
Blog my job if i'm honest – the cause of trying to get others to
understand where I and millions of others are coming from is my job-
and I will try my upmost to be worthy for it. And you know what, I
might even meet a nice, understanding bloke who is worthy of me and I
am worthy of him in return. It might happen. Who knows? Who REALLY
knows whats going to happen in the future? But my plan is to be as
flexible in my endeavour to reach my goals as possible... AFTER I
graduate that is :P
After that I will be taken where I
will and do what I must, and meet who I am bound by whatever fates to
meet. I made that decision, at 16.
I'm not going to say it was easy, ask
any one of my family members and they will tell you I was a nightmare
for a while. But something along the way something clicked. I was
told by doctors I would never finish my A-Levels and I did. I was
told I would never go to university and that I would never finish, I
have and I will. And through the past few months I have been shown
that I have what it takes to do what I want in life as long as I
stick to being flexible in how I get to where I want to be.
I think that 'something' that clicked
was my stubborn streak.
I may someday, somehow walk among
others looking as normal as you or they. Even with my ME I may reach
a point where i'm not stuck in my bed, ever conscious of pressure
sores, that I could go out and down the pub for my pint of Lemonade.
But that wont change who I am inside, or compromise my principles and
morals. I am a disabled person whether you choose to see it or not.
I'm not ashamed to say that. I am DISABLED. I just happen to have
varying degrees. And its now my job to make sure that those that who
take the time out of their lives to read this blog, understand that
there are people like me out there. We aren't invisible, we're just
hard to see sometimes. But if you take the time to look and learn,
then you become part of something amazing. An amazing group of people
who, no matter the odds, are fighting for themselves day to day to
day. And I am proud to be one of them, one of 'US'.
And we are fighting for a cure, a
diagnosis, a life as well. A life just like you are.
Finally i just want to say THANK YOU to Freya, who tagged me in this photo on Facebook yesterday, I'm not ashamed to say i welled up a little, but i appreciate it so so much that you put this on my wall. Cheers Freya, you made my day :)
