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.
When an emotion gets buried in the body, what does it look like years later and are there links to chronic health conditions? How are unidentiified autism or ADHD linked to fibromyalgia and chronic fatigue, as is emerging? What is our body trying to tell us when it seems so "stuck" and is this a clue to our recovery?
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...
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.
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?
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.
Living whole 