Things I no longer do to help manage my hEDS
Since diagnosis of my hypermobile Ehlers-Danlos Syndrome the key thing I have realised that really helps me with managing my issues with tissues is not doing certain things. On one side this is deeply unfair and upsetting and I grieve the person I was and used to be. However on the other side, it is undeniable that by stopping certain things I have felt better. Unfair but it has been a tissue successful strategy.
Promises to
medical
professionals
All the doctors I have seen since my diagnosis have told me that at this age I am highly likely to be my own medical expert. While being a medical expert is not on the cards, it is true that I have, simply by chance, and a fair bit of trail and much error, figured out a few things that work for my particular presentations.
However, I am always eager to listen and learn so I ask professionals very candidly what should I do and not do in their medical opinion. Some of the answers have not been nice to hear especially when it affects my activities and what that means to my identity. However having tried them out, they have worked for me.
My Promises
These are a small selection of what I have promised my medical professionals that I wouldn't do or stop doing. While we all have free will, my journey at the moment is to reign that free will a little bit so I can REIGN like the QUEEN I AM
No more leg splits
I've been able to do the splits from cold since I was a toddler. Useful for dance but as it turns out at my hEDS diagnosis, I was told to avoid them because my pelvis and hips are super hypermobile and doing the splits is going to tear and damage the tissues. Fair point so I haven't done this party trick since.
No riding rollercoasters
After the retinal detachment I asked the retinal specialist about what activities I would have to reduce or stop. And firmly the reply was riding on rollercoasters as the force would be too much for my eye tissues. So sorry no more of those for me. I won't miss them though as I always felt sick afterward for hours.
No more unsuitable shoes
Thanks to the support and administrations from Alex, the Hypermobile friendly Osteopath, she informed me that my feet tissues are very delicate and need to be cushioned and cared for a lot. Also the fracture clinic doctor told me "NO MORE HEELS!" So here's to comfy shoes then!
No eating hard foods
The dentist made it very clear to me that I am damaging and traumatising tissues in my mouth due to bite pressure.
As well as being fitted with a mouth guard, they said that only soft foods for me. So no crisps, crunchy veg, nuts, chewy food etc. I have noticed a big difference so far.
No more "being busy"
Over doing it by keeping busy and being distracted has meant I have overall stressed myself out and used up all my energy quota for that week in one day. So instead I am taking it easy and chilled and listening more to my body. Rheumatology were very clear that being busy wasn't doing me any fascia favours at all!
Tissue Truths
The plain truth is that looking after my tissues is a full time job. Every activity has to be assessed and broken down into how much energy it will take and how much tissue it can handle. Too many movements and POW - an injury, too much force and POW - an injury, too much of anything and POW - well you get the idea.
Instead I have started to get lazy, I pace, I am gentle with myself because I have all of my tissues to look after. And yes, it is sad and unfair that I have to stop doing things I loved to do and made up a lot of my identity but I love my tissues, my body and myself more!