Ehlers-Danlos isn’t something that I talk about a lot. It’s a challenging condition and requires constant physiotherapy to manage the symptoms and pain levels of joints that move in ways they really shouldn’t.
A condition where collagen is not formed correctly within our ligaments and so anything muscular isn’t as strong as it could be. Not just the joints that are affected.
The sub-luxes — dislocations — soft tissue damage and that’s before we even think about the internal organs and autonomic dysfunction.
Losing sensation in limbs — struggling to know what the body wants to actually do — fatigue and brain fog. Excessive sweating and poor temperature control. The list is quite endless and surprising to many — even those with a diagnosis.
Trying to build a resilient body. One that can withstand the desire to strengthen and progress.
Lucky to have had a great physic for the last few years who helps me considerably but it’s hard to continually find the motivation — energy and desire. Progress is slow.
I know I have yet another exercise to add yet but just can’t do it just now. The change in colour of my resistance bands last time has been enough to put my shoulders into resistance. My previous bands are so stretched it feels like a step back but really it’s not.
Every change means Increasing pain — the opposite of what the end goal will achieve. My hips are screaming and my quads are heavy. My heart aches — so lucky my carer can support me with the initial exercises. Gets me started. Gradually I get into the role of things.
Five or six days a week — 45 minutes at a time — then there’s the Swiss ball and pilates three times a week. A key goal here is to strengthen the inside — especially the bladder and pelvic floor — also badly affected by this disorder.
Then add in the aerobic exercise and movement patterning for an hour 3 times a week. The walks to practice pushing my chair. Upper body work is required when using crutches.
Add in the pliability stretching to release the muscle spasms caused by the interconnecting neurological condition that affects my movements. Finally, she did yoga and meditation — starting to feel like the regime of a highly trained athlete. But like days gone by when I was an ‘athlete’.
Wish I know back then what I have learnt in the last few years — would have made so much difference. Now age is not on, my side. My opportunities for higher-level sucks diminished. Perhaps in the future — who can tell? A return to masters sport is always an option. The age groups climb with the participants. No one is left out. Perhaps once more resilient both mentally and physically the options will be explored — definitely a consideration — competitive or not.
Read about Ehlers-Danlos here: https://www.ehlers-danlos.org
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