In Ehlers Danlos, muscle spasm and rigidity is a compensatory measure for hypermobility, to stabilise the joint. As such, it stems from a different cause to what is typical (not tightness as for most people but a response from the central and peripheral nervous system) and thus requires a different approach, but what? Exploring the possibilities via therapy and listening to your own body as a primary approach.
I was at an outdoor concert in an idyllic setting listening to some of my favourite music and yet, less than 5 minutes into it, I realised some part of me was screaming an existential scream, knowing I was going to be sat there like this for the next couple of hours. Admitting I have ADHD, that I am wired to need more dopamine than most, that I am rewarded by all kinds of stims (and not all are created equal...plus some are much harder to come by when your health is compromised) is proving to be a massive step towards understanding chronic illness, how it came about and why it perpetuates.
Some of us have thinner boundaries, we perceive more and process far more deeply but is this a mistake, a curse or an error in our makeup...or are we simply looking at this all wrong?
When you live with EDS, MCAS, POTS or any of the several forms of neurodiversity its so important never to cease experimenting with what triggers or supports you best as your particular mix of ideal exposures and conditions is likely to be quite different to the next person's. Take, for instance, the effects of the sun...
When extra intelligence, intensity and sensitivity cross over, they make quite the package...and it can be extremely challenging! Exploring what this looks like, and how to work positively with these traits. for ever-increasing fulfilment and joy.
Here's my update, after almost 6 months of following a mega-dose thiamine (B1) protocol, and its good news so far...
When we notice how our bodies work so closely (as does eveything in nature) with the cycles of waxing and waning, we gain the tremendous power that comes from accepting what is and ceasing to resist the natural rhythms that can also be our best source of strength when we harness them for our recovery.
Perhaps more than any other aspect of chronic illness I have ever had to deal with, including chronic unrelenting pain, dysautonomia has the ability to throw your entire life into disarray, permeating every single aspect of your life in ways that can be as invisible to the casual bystander as they are devastating. Is there a bright side, things we can learn, ways of living with it better?
Twice-exceptionality is such fertile territory to explore for anyone who may have even an inkling it applies to them (assumng they can get over the sticking point of using that much stigmatised word “gifted” for long enough to even consider it). The effect of being gifted in some areas and yet held back in others can make a person seem as though they are coping when they really aren’t, and it can also deprive them of the help, understanding and accommodations they desperately need for their deficit areas, as well as the recognition they deserve for their exceptionality. The outcome can be a lifetime of lost potential, fallen through the cracks, or even total burnout...until both the giftedness and challenges can be seen side by side and looked at in a whole new way.
If you have ADHD then you don't need me to tell you what its like...but I didn't know I had so many coping methods until I started to write them down so here they are, in case they help.
Living whole 