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.