By reading this, you’re probably hoping to hear a positive story you can connect with. By reading this, you perhaps feel the need to be inspired or be given directions to follow. But by reading this, you have already taken the first steps down your own path, as you’ve decided to seek help, learn about your condition or take comfort in knowing you’re not alone. So give yourself some credit, you’ve done well.
At 25, I was diagnosed with ankylosing spondylitis, had the movement of a 70-year-old, and told within a few years I would require a wheelchair. I was advised to stop all physical activities and even quoted “jumping up and down is not advisable”.
So, I did what I thought was correct given my situation, and set about trying to live my life to the fullest, with no regret.
8 years later, having worked in multiple countries, travelled solo across the world, cycled across Asia, and currently take part in a number of highly physical activities, I’d say I’ve done well too – and with no wheelchair in sight.
Last week, I found myself in a gym in Bangkok, a budget gym where everything is unbelievably aged, terribly unsafe and where the rusty metal grips on the weights, seemed to make each one twice as heavy. Yet, I loved every second of it as I could press, pull and curl everything I wanted and left to jog home, feeling physically drained but proud of myself.
This morning I woke to discover I couldn’t move without literally screaming in pain again. And as I am alone in a strange country, I had little choice but to lay as still has possible, with a severe burning discomfort, for over 5 hours.
Last week was a good day, today was a bad day. But it’s no big deal.
For me, the hardest part is dealing with the uncertainties of tomorrow and every day I ask myself the same questions. “Will I be okay to go out and meet friends?” “Should I cancel my flight next week?” “How much pain will jolt through my hip when I land my next step?” “Should I bother getting out of bed at all?”
Answering these questions has been harder than dealing with the immobility and pains I suffer from.
Back in England, I tried everything, from acupuncture and hydrotherapy to herbal medicines and morning exercises. I’ve been entombed for so many hours in X-Ray and MRI scanners that I am secretly hoping to develop mutant super-powers. But what I’ve found from all these treatments is they only aimed to diagnose or treat my body. Very few aimed to treat my mind.
People who escape unharmed from serious car accidents, still get treated for trauma or shock but people with lesser known yet painful conditions that could last for years, rarely get asked basic questions like “how are you coping today?”
When I found the NASS website several years ago, I saw they didn’t claim to offer me a miracle drug or a wonder cure. Instead, they offered something the majority of Doctors don’t have the time to provide. They offered to listen.
Having someone that understood my mental anguish and showed genuine empathy upon hearing my story, not only help me to manage the physical side but also taught me how to answer my own questions, during times when I was on my own.
So the only advice I’d like to offer you, is to find someone who will listen and put your mind at ease. Someone that won’t complain if you suddenly can’t do something with them or someone that can at least understand and see your point of view.
Only we can know how this pain feels, what it prevents us from doing and what it could perhaps mean in our futures. But by making more connections to people you deem qualified and willing to listen to you, I promise, is one of the best treatments available.
I wish you all success and a pain free onward journey in your lives.
Christov travelled the world for years, currently he lives in Bangkok and owns a healthy juices company, while inspiring you guys to live your life to the fullest.