Learning to live with any of the syndromes (CFS, POTs, fibro, CSS, EDS, MCAS, to name but a few) can be incredibly tough. From dealing with doubters and denial, discrimination, misunderstanding, thoughtlessness, rejection, loneliness, fear, self-doubt and all the other rigours of long term chronic illness, this post takes a look at it all.
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.
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...
Here's my update, after almost 6 months of following a mega-dose thiamine (B1) protocol, and its good news so far...
It may seem like a reasonable suggestion, that you increase your exercise to recover from chronic illnesses such as long covid or CFS...or is it really a terrible mistake that could make things much worse? Exploring the paradoxical role of exercise for recovery from these highly contrary conditions.
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.
Illnesses stop us in our tracks and call time on the old ways of being that no longer fit who we are. Often, they are an invitation to look deep into the corners of our life and do some real work…the kind of work that brings us into love and acceptance of who we really are, beyond the stories and expectations that get overlayered by our crazy and demanding lives. Often, there is an opportunity to be found in our own disarray and, once we find it there, it doesn’t stop giving…not ever, for the rest of our lives.
Do you have marked seasonal difference in your health symptoms? Many people do! However, when we learn to accept them, know them and work with them we get to find a new kind of equilibrium in spite of them, and that brings its own seasonal gifts.