The Paratriathlete Diaries: Hypotonia?

This post is one of a series I call “The Paratriathlete Diaries” – in the series I hope to take a regular look at the random things that happen in my life as an athlete with challenges.  Any ideas, questions, or suggestions throw them my way. I would like to use this feature as a way to answer questions anyone might have about living with chronic conditions such as Charcot Marie Tooth disease and Ehlers Danlos Syndrome, but with a light touch and a bit of humour. I’m all ears!

Earlier this year, a kickass paratriathlete I know says to me “you know, the one thing that stinks about having EDS is hypotonia”

(or something like that, I’m paraphrasing, this is not an exact quote!)

Being kind of embarrassed to admit it, I had to go and look up hypotonia.

Hypotonia: The medical term for decreased muscle tone.

And here I was thinking I just had a hard time building muscle! Who knew this could be attributed to medical reasons.

Looking back I have always said that I had a hard time building strength. It has taken me a LONG TIME to get stronger to do simple basic things like lunges. I thought this was always down to poor nerve function from CMT (my nerve disease) but apparently this is related to EDS (my connective tissue disorder).  Who knew?!

I like the fact that I can, with a medical diagnosis, understand why things are the way they are with my body. But at the same time, I think that it is WAY TOO EASY to just lay things onto the diagnosis as an excuse.

Case in point. I have never used a proper weight rack for training. My deadlifts have been done on a bar stacked with weights – but not at a standard weight lifting bar. Sure, I did deadlifts. But not REAL deadlifts. “Oh I need to be careful about that, you know…” But on Saturday, Tom set up a bar with training weights for us to do “proper” deadlifts with. To work on form. To feel what the bar feels like. To stop being scared.

It would have been really easy to just step away from the weights. “Oh, you know, I have HYPOTONIA from my EDS. I can’t really build strength well.”

But that would have been an excuse.

So I walked up. Focused on form. And with some empty shells of weights (2.5 kg each if you must know) plus the bar, I executed my first “REAL” deadlifts.

So, yes. I have a hard time building up muscle tone. My intrinsic weakness means I can’t really sustain more than about 140 watts when I cycle. I find it harder to get faster in the pool, as to get faster I need to get stronger. And getting stronger is hard. But just because something is hard does not mean it is impossible, or something to be scared of. Just because I have a medical diagnosis does not mean that I have an automatic excuse. It just requires a bit of courage, determination, open mindedness to find work arounds, and some really great encouragement.

Thanks Tom for all of your help with strength and conditioning this year!

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