My thoughts as I was gave myself a mini Physio treatment while my Physiotherapist is on leave.  

It’s been 6 years since I first experienced pain and it has changed my life completely. I still remember how life used to be before that, but I surely do not remember how it felt to be without pain.
6 years of debilitating pain. Twenty-four hours a day. Please, read that again if you need.
It’s just become a part of life now – I’ve spent countless number of days doing absolutely nothing but crying in pain. Crying because of pain. Then there have been countless nights where I cried myself to sleep because the suffering that came along with the pain was beyond me. Pain is not easy. We’re not talking about the pain you develop because you’re ageing or the pain you experience because you hurt yourself – one of it is only natural and the other one heals quickly enough for you to get a hold on life again..

The pain I’m referring to is in your body. Your body is made up of the pain that’s in your connective tissues, your muscles and your joints. It affects the very building block of who you are. The one that affects other systems in your body too. The one that makes your physically fragile and causes you to fall apart. That’s the kind of pain that steals life away from you and also the kind that opens your eyes, your heart and your entire being to the very idea of simply breathing and surviving. It’s the kind of pain that forces you to change your lifestyle – your environment, the people you interact with, your diet, your career, your goals, and the list continues. You realize what’s important and what’s not and sometimes it brings you down to your basic survival needs. It’s the kind the makes you even more compassionate and loving towards yourself and then ultimately others.

This pain is not easy. And no, it doesn’t get any easier as you grow older. It doesn’t suddenly disappear. I believe in practical magic – looking forward to healing and recovering while trusting that you’re capable of dealing with all that is yet to come. We’re not talking about recovering from a flu – we’re talking about surviving with a rare,chronic disorder. That’s the reason why I believe in practical magic and not some miraculous “take this pill and become pain-free” business. I believe in finding a comfortable space for ourselves where we can just be us, in pain, with pain and grow from there. Learn. Share. Bloom. Do what we love, what we CAN handle, see what helps, find support and guidance..to me, that’s magic.

Six years later, all I can say is this -If you’re living with EDS, pain is either constant or increasing. It doesn’t decrease and it is never zero. Pain is not something you can distract yourself from. Pain is a sign from your body that something is out of balance and it is your duty towards your one and only vessel in this life, your body, to do everything that is in your control to make it easier on yourself; to reduce your own suffering. Pain is not something to distract yourself from because underneath all that pain, there is wisdom.