I was healthy and able-bodied up until the end of 1996 when I was 26 years old.
I got to do all the things that a healthy and able-bodied person gets to do without ever thinking
about how lucky I was to be doing it.
I climbed trees and fell out of them, I rode motorbikes and crashed them, I drove cars and also
crashed a few of those as well, I even was hit by a car doing 30mph whilst I was crossing the main road
and despite being bruised, needing stitches in various places, and losing some skin on the road
surface, I escaped mostly unharmed and my body healed.
I worked many jobs from working in nightclubs to working for the MOD as a firefighter and never
once did I ever consider how lucky I was to do what I wanted without any barriers in my way.
In December 1996 I was admitted into hospital and after a lot of back and forth and being told there
was nothing wrong, I was diagnosed with ME, and in 2008 and 2010 I had major knee surgery and
then a knee replacement that took away my mobility.
So now as many of you will understand, every day is now very different from how it once was, every
day I am faced with challenges and with barriers.
But at the age of 53 and having spent half of my life with a disability, you would think that I was used
to it or at least mentally I was used to it!
However, I still find myself thinking I am able to do something when the truth is that today I am laid
here in flare-up after planting some flower and vegetable seeds with the grandkids and doing a small
amount of weeding.
Having just had breakfast and watched the latest Ben Fogle New Lives in the Wild, I am once again
reminded of the fact that my brain is unable to remember the fact that I am disabled.
As they were on a mountainside in Scotland stalking deer, I turned to my wife and said I want to do
that one day!
The look she gave me in return told me I had said something stupid. I should know, I have seen that
same look many times. The look that says “Don’t be silly, you are disabled”, a look that somehow has
compassion, understanding but tells me I am a silly old sod!
Way back in 1997 I was told I needed to learn to pace, that pacing was the way that I could keep
flare-ups to a minimum, I still have not got the hang of this today.
“I feel really rough” or “Pain levels are high today” is what I say to my wife followed by “I wonder
why” and then comes the look again. I then realise I feel that way because yesterday or the day
before I have not paced myself, I have not protected myself from a flare-up.
Sometimes I don’t care, it is worth it to do the things I enjoy like gardening or to get a job done that
just needs doing and there is no other choice.
I seem to be trapped with a body that is incapable of doing the things that I once thought nothing
about doing and a brain that is still convinced that it is possible for me to do the things it dreams of
doing!
Do you ever truly get used to being disabled?
Zec does product reviews, blog posts and is, in his own words, a “Grumpy Git!” @SatonmyButt
