Ehlers-Danlos syndrome

Syndromes

~ Helen White ~ Leave a comment

Suddenly, people like me, on the long-haul to solo self-recovery from "mystery" illnesses find we are not all alone in here. Amidst the sea of people embarking on the bewildering covid long-haul recovery path, I'm hearing such a lot of talk about syndromes that are painfully familiar turf. So, what would I share with anyone at the start of such a journey and what does (or will) the coincidence potentially tell us about chronic fatigue, fibromyalgia, PoTs, MCAS and a whole load of other overlapping syndromes? Here begins the mass learning curve!

Can an epigenetic trait be put back in the box?

~ Helen White ~ 3 Comments

We each have our pool of genes but how these express can be a matter left in the hands of the various lifetime experiences we have; so how do we herd those cats back into line if they go wandering off where we would rather they didn't go?

What’s your alchemy? (Mine is dancing.)

~ Helen White ~ 3 Comments

Our personal version of alchemy is so often performed without even thinking about it, when lost in those tasks that take us deep into ourselves, into our innate knowing and our joy. So often, we learn to treat such activities as self-indulgent, pointless or plain weird and yet, the paradox is, they often hold he key to our deepest transformation...in other words, they are exactly what we need to be doing right now.

There will be times when you just can’t (as well as times when you certainly can)

~ Helen White ~ 1 Comment

How do we know the difference between when our intuition is speaking to us or when our self-sabotaging fears are stopping us in our tracks? This is an essential lifeskill for self-care and guidance when we venture back into life's busy fray...

Under pressure: the EDS anxiety link

~ Helen White ~ 3 Comments

Hard science has uncovered a mechanism whereby the same collagen abnormalities in EDS that make joints especially flexible seem to affect blood vessels, making those with it prone to accumulation of blood in the veins of the legs, an effect that may lead to exaggerated cardiovascular responses to maintain the output of blood from the heart. This and other foibles, which I feel are versions of the same response, put those of us with this issue under immense pressure and strain, all the time, as our version of "normal" so just imagine how much we then react to any additional triggers, to which we tend to be hypersensitive (I share my about theory about that too...), setting off our nervous system at regular intervals in a way that has nothing inherently to do with mental health...although, no surprise, it can start to manifest as anxiety over time. Joining some dots and celebrating just how much people with hypermobility type EDS deal with as their daily benchmark...plus some practical ways of making it better.

Ehlers-Danlos, POTS and Asperger’s…many lightbulbs go on at once

~ Helen White ~ Leave a comment

It can feel like a very long walk down a dimly lit corridor when you are trying to fathom your way out of a long running health condition such as fibromyalgia, as I expect others on the journey could probably relate to. From time to time, if you’re fortunate and diligent enough in pursuit of … Continue reading Ehlers-Danlos, POTS and Asperger’s…many lightbulbs go on at once