PoTS

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with managing these conditions and seeking appropriate medical attention in a system that still holds an extremely outdated, shortsighted and even biased concept of how these conditions and their symptoms manifest in people's lived experiences.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?

ME/CFS and neurodivergence: a potential overlap?

~ Helen White ~ Leave a comment

There are so many overlaps between ME/CFS with common neurodivergent factors such as extreme sensory sensitivity and environmental challenges, increased hypermobility, porosity and laxity, orthostatic challenges such as POTs, increased susceptibility to viruses and adverse medical side-effects, sometimes lifelong energy deficits and frequent burnout events that, surely, the question needs to be asked...is there a credible link between neurodivergence and having an increased propensity to develop the condition? If so, how do you single them out; is it even viable to try and view the one factor in isolation from the other if they now coexist side-by-side, as they clearly do for me, or is the better headway always made once they are viewed as a kind of package of tricky responses to "life" as we know it.

Cervical instability at the core of fibromyalgia?

~ Helen White ~ Leave a comment

Exploring why it may be worth considering cervical instability as a root cause of fibromyalgia with some real food for thought on how the wide-ranging symptoms of this one single, often hard to notice, factor can really start to add up.

History of a health burnout; what the past can teach me now

~ Helen White ~ Leave a comment

Such as we are experts in anything, those of us with long term health issues also possess a rich hoard of hard-won experience and insight into what made us chronic in the first place. So, what can we take from all the years of navigating our way through the experience of chronic illness as a means to averting a delayed recovery from covid or other trigger virus, especially when we notice any similarities with what we have been through before? Can we now take the overview in order to notice and better understand the patterns, weak spots and trip-wires of chronicness before they become ingrained this time?

Covid’s effect on the vagus nerve (especially if you are susceptible)

~ Helen White ~ 4 Comments

Exploring a known link between covid-19 and certain issues relating to the vagus nerve (amongst others); how does this relate to some of the more scattered seeming symptoms of long covid and what can be done about it in the hopes of making a speedy and full recovery?

Hypermobility is a spectrum disorder: its not all about subluxations!

~ Helen White ~ Leave a comment

News flash: hypermobility is not all about joint subluxations and is not as rare as they say, especially for women, but is actually a spectrum condition, meaning your most bewildering symptoms might be on that spectrum. You need to cease feeling like such an imposter in order to start looking hypermobility right in the eye because only then can you start to tackle it as a possible source of chronic pain, dysautonomia, GI issues and a whole host of other health mysteries.

Misophonia…another “oh, that’s just my autism” moment

~ Helen White ~ 2 Comments

Turns out I am one of probably thousands of people who been profoundly affected by misophonia all of my life and yet didn't know what it was and could never put a name to it (or quite dispel some of the shame of it)...until I began to research the effects of autism more and more by listening to other women's real-life stories. Sharing in case this is any of you too.

Fibromyalgia in review

~ Helen White ~ Leave a comment

There is no one approach to fibromyalgia, it has to be a multi-system approach but this recap of what I know, with the help of a webinar I watched yesterday, has been a really big help in summarising all the key points and gaining some real clarity. Also for checking in with any approaches that need a little boosting and I also hope it might help anyone else who could do with a review.