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The October Slide is real

~ Helen White ~ Leave a comment

I’ve been noticing the October slide into worse chronic health symptoms phenomenon for years (as reflected by countless posts alluding to it ever since I first started writing here) but, at last, I’m hearing tons of other people talking about, or maybe my ears are just pricked-up looking for more answers as ever, galling as it is to see a summer’s worth of steady health improvements set back like this once again. So what is it, why does it happen and what can be done to get through this heinously challenging time for some of us?

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.

Missed signs of Ehlers Danlos during childhood

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With EDS and HSD Awareness Month upon us, it feels like a fitting time to share one or two posts written from my personal experience of having lived with Ehlers Danlos Syndrome all my life yet not always having known it because other people around me also didn’t have a clue. You could ask, well … Continue reading Missed signs of Ehlers Danlos during childhood

hEDS and “energy flu”

~ Helen White ~ Leave a comment

I’ve been calling it “energy flu” for decades but what I mean by this is when the environment changes and I sense it through every tissue and fibre of my hypermobile body and it affects me…affects literally all of me, like I’ve walked in or out of a pressure chamber and nothing is quite normal whilst I adjust. Talking about hEDS in relation to an increased sensitivity to environmental shifts, how this impacts sensations, symptom load such as pain and dysautonomias, functional ability, executive function and more and things you could possibly consider as a better way of managing these episodes.

How long awaited hEDS diagnosis actually FEELS

~ Helen White ~ 2 Comments

So as it turns out, I'm not lazy, not hypochondriac, not a malingerer, not attention seeking, not making it all up, not interfering where I shouldn't, not feeble (far from it), not "over-sensitive" (ditto), not making a hobby or a hyperfocus out of illness, not collecting labels, not depressed nor anxious (except when the circumstances themselves pushed me that way), not trying too little nor doing it all wrong, not lost in self-absorption, not avoiding being a grown-up...or alive. I have been dealing with a complex multi-systemic health condition with as much grace and determination as I could muster on a daily basis. Unpacking some of the emotions of receiving a long awaited diagnosis.

When chronic fatigue meets an ADHD brain

~ Helen White ~ Leave a comment

Just like it’s much harder for a hypermobile person to recover from an extended period of inactivity and lack of appropriate load-bearing (since I learned this the hard way, I have now heard it coorroberated by many reliable sources of hypermobility-meets-chronic fatigue information) I suspect it’s much harder for a neurodivergent person to recover from extended lack of cognitive load bearing. In fact, across both areas, my whole view of pacing has had to be changed since I was busy writing about it last year, with my source information taken from more neurotypical outlets at that time. So what’s important here is to "use it" in order not to "lose it"…yes…but to adapt the way we “use” and “move” to what we can genuinely cope with at this time, be it recumbent exercise or micro dosed cognitive excursions that we enjoy but don't sustain for too long at a time.

Super syndrome: taking a unified approach to all the things

~ Helen White ~ Leave a comment

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.

Slowly inching back outside after a crash

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Of course you want to get back out there doing normal things, just as soon as you feel remotely ready, but there's a right time and a right way to do this with ME/CFS. Exploring some of the expectations, the risks, the difficulties and the lessons of inching back outside again.

What is “rolling PEM”?

~ Helen White ~ Leave a comment

Rolling PEM (post extertional malaise) tends to come on quite late after the multiple exertions that caused it, often creeping up on you unseen and then it comes on BIG. Its a trickster because it can even feel good at the time it starts accruing…I hear just so many people saying that they felt so good while they were in the thick of pushing through the big project or doing more exercise than normal or handling the new responsibility at work, that they felt like they were over ME/CFS; that they even thought that maybe they were getting permanently better at last, that it was a sign that they were ready to take on more. At the height of the adrenaline surge, you can feel as though you are more than coping, that things really are improving, that you are putting chronic illness behind you at last, so you then feel more confident to take on more of the "normal" things than you would otherwise dare...until, suddenly, it has the last laugh! I recently heard a description of it that went along these lines: if normal PEM is a debt that you always have to pay back after the energy overspend, like repaying a bank loan, then rolling PEM is like having to pay back a loan shark with unimaginable amounts of interest added on top. You really don't want to be indebted to that kind of debt collector because it will be utterly ruthless to deal with; there will be no more negotiating or delaying to be had, absolutely no leeway for extenuating circumstances given!