Close your eyes for a moment and think
back to your earliest childhood memory? Perhaps a sunny day in the
park with your Mum and Dad, the smell of freshly cut grass filling
your senses as your Dad pushed the swing you sat in? Or maybe the
cacophony of noise overwhelming you as your favourite footballer
scored the winning goal at your first ever football match? Whatever
it is, I truly hope it's a happy memory that you cherish
unreservedly.
Mine is... somewhat different.
I was born with a condition called
Spastic Diplegia, which is a form of Cerebral Palsy which affects my
lower limbs. You can read more about it here:
http://en.wikipedia.org/wiki/Spastic_diplegia
. I was born with the umbilical cord wrapped tightly around my neck
which, as far as I understand, cut the oxygen off to my brain
temporarily and resulted in this condition. It was discovered when I
was about two years old, when my parents realised that I was
struggling to walk.
Which brings me nicely to my first
memory, led face down on a hospital bed and feeling nine stitches
being taken out of my right leg (the old kind of stitches, mind, not
the dissolveable ones they use nowadays). I remember the smell of
the room, and the rough feel of the sheets on my face. Not the most
pleasant of first memories, sadly.
Over the next few years I endured a
daily exercise routine (Sorry Dad!) which was excruciating at times
and so very frustrating – with the nature of the Spastic Diplegia,
any “success” was tiny and very difficult to see, and with my
balance being as bad as it is, accidents were a very regular
occurrence and I spent many times at the local hospital Accident and
Emergency department. I had weekly hydrotherapy that my mother had
to drive an hour to and from in order to ensure that I continued
getting movement in my legs. It wasn't easy, on me or my parents I'm
sure. You can imagine what it was like at school for someone who
walked a bit differently. I was bullied through my entire school
life.
When I was about seven years old a
consultant – talking over my head to my Dad – told him that I'd
never run or play sports, a devastating thing to hear for a young
boy. It has stuck in my head all my life. As I went into my teen
years my right knee started dislocating, making a right mess of my
leg the first time and then similar results until the orthapaedic
surgeons decided to operate to stabilise it. My left knee went the
same way a few years later.
I'm now in my mid 30s and I've had six
operations on my legs. They wanted to do a lot more.
I've always had pain in my legs –
every single day – but it has only become overwhelming in the last
3 or 4 years. I had a fall 10 years ago where I slipped in the snow
one January morning – a seemingly innocuous occurrence but I knew
straight away my right knee was in trouble. It hasn't been the same
since. Over the last four or five years, though, the pain has become
increasingly unbearable.
Two years ago I was diagnosed with
Complex Regional Pain Syndrome (CRPS)
http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome
.
Today, I struggle with pain throughout
both legs – my right leg was always the worst but sadly the left is
catching up steadily – from my hips all the way down to my ankles.
I've developed osteoarthritis in my left hip and both ankles as well
as my right knee. I sleep maybe four hours a night if I'm lucky, and
wake up in between that in absolute agony. I cannot count the number
of times I've woke up in tears or having to stop myself crying out so
I don't disturb my wife any more than I already do.
I don't write this looking for
sympathy, not at all. I share my story so that people realise just
what someone like me – and there are those out there who are much
worse off than me – goes through on a daily basis.
Imagine waking up with your legs
feeling like they're on fire, from the inside out. Your lower joints
ache from trying many times to get comfortable during the night –
which your wife had to help you with because moving was so difficult
– and then it takes 15 minutes just to be able to stand up and go
to the bathroom. Walking every single step is painful, and carrying
anything is almost out of the question. Oh, and you've damaged your
shoulder and chest from using elbow crutches for so long. You have
to wear a painkilling patch and also take very strong oral
painkillers on a daily basis. You can only walk a few steps without
stopping and spend most of the time exhausted.
Not exactly the life of riley, is it?
So what do we do? Dealing with Chronic
Pain is, undoubtedly, no picnic. We do what we can. We do what
exercise we can (if we can), work with Pain Clinics and medical
professionals, with physiotherapists and Occupational Therapists to
try and make our lives as manageable as possible.
Most importantly, though, we rely on
one another, through support groups and social media. I'll take a
moment to point to a brand new site called Chronic Relief who are
hoping to set up a community for sufferers and support – they can
be seen at www.chronicrelief.co.uk
. Drop by and say hi!
A note of positivity to end on –
despite the depression, the pain, the struggle that I go through
every day, it is always possible to find positives – with family
and friends, with interests, with your loves in life. Never
underestimate a good movie or a wonderful book, or a beautiful sight
or sound in this wonderful country we live in. Despite any hardships
there is a lot to enjoy.
I wish everyone a pain
free evening, and a smile at the end of each day.
