The following article was written by a lady who has hypermobile Ehlers-Danlos syndrome and Charcot Marie Tooth Disease. This lady suffered many dislocations to her knees prior to surgery in her teens.  In the article she aims to express just how deep the fear and vulnerability of dislocation is ingrained, even after so much time and so much specialised physiotherapy, and how she battles to overcome it and achieve her goals, despite dealing daily with the many debilitating symptoms of these conditions. 

 

Battling The I Can’t Monster

 

I was cycling home from the park – after a run that saw me at a sub-12 minute mile pace for the first time EVER – I was thinking about how so much of what I am trying to do is to get beyond the deep physical memories I am carrying.  These ‘CAN’T feelings’.  The feelings and memories that my MIND seems to be holding onto, in order to protect my body.

 

Last year, when I did the Strong-Like-Bull training camp, I asked John Hirsch (camp founder) for some honest feedback that I could take back to my coach.  He said: 

 

“...When pushed you respond well.

You can clearly do more than you think, which is common in many athletes.  I think this is a particularly important point for you, as there may have been a lot of people in your life who, instead of pushing you, pulled you back because of your disability...

You need to be the boss of you. You know what you can do and what you can’t.

You will need to keep pushing to find that edge.  Once you go over it a few times you will have the (positive) experiences needed to know what you can and what you can’t do and where that line is…”

 

It is true. I have an ‘I Can’t Monster’ living in my head. 

I think my ‘I Can’t Monster’ is a monster whose heart is made up of memories of pain, whose head is full of the words from doctors who allowed me to do nothing physical, doctors who encouraged me to avoid doing things that put me at risk of pain and injury. My ‘I Can’t Monster’ is a monster with flawed collagen, whose knees are on the back of his legs, whose elbows can’t support his own weight.  He has a body like Gumby. He is the monster in my head who stops me from pushing myself.

I am starting to battle the I Can’t Monster.  It is SO HARD.  Each time I confront the I Can’t Monster I am pushing into unknown physical territory.  I am doing things I don’t ever remember doing. I have underlying fear. Each step is a risk. But equally… each step is a victory. I feel like I am nurturing a newborn called confidence and it is VERY HARD.

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Below are some quotes for Donna's blog - you can read more of at beatinglimitations.com

      

To all the doctors and other sufferers (of CMT and hypermobility) who told me that I would never run… Pshaw!  Exercise for many people with conditions and ailments - whatever those might be - IS POSSIBLE.  It is just that we might not be able to follow a typical plan to get strong.  For example, Couch to 5k plans typically have about 12 weeks to take someone from zero to race.  For me, to do a 5k sensibly and without injury, it took about 10 months - of:  Hard work.  Commitment.  Focus.  And yes, a little pain.  

 

Find a team.  Make one.  Get everyone on your side that you talk with - doctors, physiotherapists, your local running shop, your friends.  I am really lucky in that I have a huge amount of support from my team - and that my personal team includes an awesome coach and sports therapist.  With the right amount of support I am convinced that anything is possible.  And I am convinced that when it comes to activity, ANYTHING is better than NOTHING.  If you want to exercise, seek support from others with your condition, from your doctors and from anyone who is willing to take the time and patience to work with you and your body. 

 

Don’t be afraid.  It is hard to take the first step into a running shop, to seek advice on shoes, to explain the problems you have.  Go with a friend.  Ask around for recommendations for shops which have great customer service.  But don’t be afraid to ask for help from experts.  And don’t be afraid to tell people what you are dealing with - only through educating others can we build our own support and hopefully make it easier for others with similar conditions.