I’m going to tell you a story. It’s going to open up how you perceive the world, it is going to make you question everything and maybe, just maybe, let you find your road to recovery…. Alternately, I’m about to really piss you off but I’m willing to take that risk!
Anyone who knows me will know I don’t like labels. They can sometimes assign an unwanted identity, they attach negative baggage and worst of all…they can be all consuming.
The longer I do this job, the more I realise that there are two types of people;
1- People who are consumed by labels.
2-People who refuse to let something define them and chose to fight.
Sadly, everyone seems to think they are the latter when in actual fact they are not doing anywhere near to what they could be doing!
If you are in pain or you sublux regularly, there is no excuse to why you are not being consumed by the idea of a better standard of living, why you are not trying EVERYTHING, absolutely EVERYTHING to lead a better life. That should be your driving force, that should consume your time; not posting on support groups about how much of a crap time you’re having or playing ‘health top trumps’. If you do not get what you wanted, maybe you didn’t want it bad enough.
I guarantee, every excuse going I have heard it before.
“I can’t exercise; I have POTS” – Many of my EDS clients had POTS, some couldn’t stand up for more than 30seconds, yet they still managed to completely change their lives.
“It’s not the right time, I’m not pain-free yet” – Pain is a NORMAL part of being a human. If you wait for the day to never experience pain again, you will die long before it comes.
“I’m just waiting until I’m not as stressed” – It will never be the right time, ever!
“Nothing works”- Oh really! You have tried all 12 of the most common alternative therapies and the hundreds of other options available to you between the NHS and private care and stuck at them for a period long enough to be *certain* they didn’t work?
“I’m too severe/complex, no one can help” or “My fibro is much worse than theirs so I can’t even do half of that” – Oh if I had a £ for every time I’ve heard that. There is a young woman who lives a few miles from me who, due to EDS, was at risk every day from internal decapitation. She had laid on a stretcher bed for 7 years, not being able to sit up because she would seizure from her incredibly severe cranial instability. If you go through her Facebook feed, every day she posted her fundraiser for the surgery she desperately needed. She organised fund raising balls, fundraisers at the cinema and shopping centres and probably sent hundreds of emails. Literally, every hour of every day, her determination and drive kept her fighting and fundraising and doing everything possible that she could do, until she did it. She raised the funds, she found a surgeon who could do the operation, she flew into a different country and got the fusion. This is an EDS warrior, this is someone who thought “NO, this isn’t how it’s going to be”. If she puts half of that drive into her rehab, she will do incredibly well. This is the exact kind of people I work with every day 1:1, these are the people who make me drag my ass out of bed and go and do a job I love. But it’s not the job I love, it’s the people.
These are but a few, of the many excuses I’ve heard over the years. You might be saying “well that was big rant Adam” and you’re right. I’ve been in the desperate, pain-filled position many people are in right now and one day I realised, “well actually, I’m not doing everything I could be doing”. That’s why I want to tell you this story so that you can open up your view of the world and help yourself.
When I was 5 years old my Dad told me a joke “Why did the chicken cross the road?” the answer being, to get to the other side. Like most of you reading this, I was thoroughly un-entertained. How is that funny I thought? What a terrible joke and like many here I forgot about it for several years.
Many years later whilst talking with a friend, I was told a joke “Why did the chicken cross the road?” the answer being, to get to the other side. Again, I was not impressed and my friend seeing my disappointed face slowly leant in closer and said ” Oh you’re ones of the people who still doesn’t get it”.
You see when you are 5 years old, or indeed any other age. You have a subjective view of the world based on your own understanding of the world or at least how you perceive it to be. So, when my friend smiled and said ” he wanted to get to the other side, as in the afterlife” it blew my mind. I had thought for all those years it was just a really crap joke with very little meaning. That the joke was said all the time, only because it was so terrible.
You see the 5-year-old Adam viewed the world based on what he knew and at 5 years old I did not have a very good understanding of death. I had lived for years being 100% sure I knew what this joke meant, yet it wasn’t until I had lived for many years, learned different things and saw the world differently to the younger me, that I was able to actually see the real meaning. There will be many reading this who already knew this, but there will be so much more who had not even considered it.
This is a simple story about how what you think you know, what you believe with all your heart, what you would stake your life against, it could be completely wrong. Unless we can time travel back to 1847 and ask the person who made the joke what they meant, then we still can’t be completely sure that our understanding of it is 100% right. But, given what we know now, how we perceive the world now, it makes the most sense.
So for those of you who believe this is how your life has to be, those of you who believe you cannot change your situation, and those of you who believe you have tried everything. I hope Fibro Chicken has taught you something; that your life now is because of what you think you know.
I know what you’re capable of ………… And it’s so much more than you think.