MCAS

Music festivals and the like: The biggest win isn’t pushing through but getting real about what you can and can’t do

~ Helen White ~ 2 Comments

As someone who is both autistic and who has disabilities, I've learned the hard way that the most important thing is to keep getting ever closer to living within my actual capacity (not some pipe dream based off "what I have done in the past" during all those years when I tended to try and normalise my behaviours), knowing my limitations, tailoring my life more and more to what feels good without all the compromise and stepping away from circumstances that have too high a toll, in terms of physical consequences and overstimulation from crowds and such, to be any good for me.

hEDS and HSD – “complex syndromes”

~ Helen White ~ Leave a comment

A groundbreaking new study has highlighted the multi-systemic burden of living with either hEDS or HSD along with the considerable financial and circumstantial costs associated with managing these conditions and seeking appropriate medical attention in a system that still holds an extremely outdated, shortsighted and even biased concept of how these conditions and their symptoms manifest in people's lived experiences. Here's hoping this new study paves the way towards a complete overhaul of the diagnostic process and a much more accessible "joined up" approach to symptom management.

Reframing PEM and considering how it may be linked to delayed emotional and sensory processing in autism

~ Helen White ~ Leave a comment

How could having more sensory information to process than the next person and delayed emotional processing have to do with post exertional malaise or delayed onset pain and what could any connection between them tell us about PEM so that we can reframe it in a more positive light?

Super syndrome: taking a unified approach to all the things

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What if there is a constellation of frequently overlapping health “things” that some of us have going on, all of them connected together so deeply and intrinsically that it makes a nonsense to consider them in a piecemeal fashion? Looking into the findings of a couple of neurodivergent medical professionals who share this view I have so long held and ways we can use the information to further our self-understanding and thus empower ourselves.

Stomach issues, supplements and neurodiversity…what a pot of challenges!

~ Helen White ~ 7 Comments

Gut issues and neurodiversity is a BIG topic,affecting every single aspect of the nervous system and beyond. Diving in with some of what I've learned (the hard way) for myself as an autistic ADHD adult whilst hopefully offering some pointers and patterns to look out for.

Living with syndromes

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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.

Effect of the sun on EDS, POTs, MCAS, ADHD etc.

~ Helen White ~ 2 Comments

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...

Chronic health journey recap: hardships, connections and gifts

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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.

Is limbic retraining any use for structural chronic pain such as EDS? (Spoiler: yes!)

~ Helen White ~ 10 Comments

Its been a while since I've written for this blog because I've been deeply into the process of following the Gupta Program limbic retraining since February and wanted to give my all to that...ongoing. I've seen massive improvements in many area of my health management, far too many and particular to me to itemise and, … Continue reading Is limbic retraining any use for structural chronic pain such as EDS? (Spoiler: yes!)

Back to centre again

~ Helen White ~ Leave a comment

Bear this in mind when you consider even the best-intentioned elimination diet. Cultivating joy is central to everything if we are to thrive in life at all…and its an insider job. Take away your entitlement to prepare, look forward to and then relish, without undue fear, some of the most natural and delicious, healthy, food sources that others take for granted and you are quickly placed on a road to isolation, disillusionment and dispair. You begin to wonder what you have done to deserve such a thing…and this is certainly no route to healing!