ME/CFS

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?

The fact I “seem” to be coping with the big event doesn’t mean that I really am!

~ Helen White ~ Leave a comment

My hypermobile neurodivergent way of getting through an event might not be typical and will generally involve a lot of extra strategy and accommodations but it is just as valid as the next person's and, the more I own this, the less disappointed I am with myself or my circumstances. The world does not, in any large way, accommodate people with neurodivergent sensory responses to the environment or their not insubstantial neurological or physical differences, especially if hypermobile, therefore big events are seldom pitched to accommodate us, as a minority factor in the room. The very best I can do is have my own list of helpful methods and tools at hand to get me through these big events my way whenever they happen, with a view to minimising the worst kinds of after effects sufficiently enough for me to be able to hold on to the happy highlights instead of all the low points. Here are a few of my tips to myself in case they are of use to anyone else.

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.

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.

Finally, a diagnosis!

~ Helen White ~ 2 Comments

Why is diagnosis just so darned important and cathartic when you are living with complex health; is it just because of finding the right treatment protocols (which is an important consideration since the advice for one chronic condition can be quite contrary to the advice for another, as I learned the hard way) or is there so much more to it than that?

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.

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?

B6 toxicity? When there’s a reasonable posibility.

~ Helen White ~ 2 Comments

Potentially toxic levels of B6 supplements adversely affecting many people's health are finally hitting the spotlight and, by coincidence, just when I am finding out that they may have been a contributing factor to some of my worst and most frightening symptoms. Sharing the journey of discovery so far.

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.

When the dopamine wears off…avoiding the next crash

~ Helen White ~ Leave a comment

Does dopamine really mitigate pain? If so, what part does dopamine shortfall play in chronic pain conditions such as fibromylagia, neuralgia and in the delayed and often exaggerated post exertional responses of ME/CFS? How does this factor overlap with other dopamine deficient conditions such as ADHD and parkinsons and how can the knowledge of it be used to hack a better life in chronic health cases where dopamine levels play such an intrinsic part?