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?
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.
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?
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.
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.
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?
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.
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.
If you are AuDHD and a situation that is meant to be working out for you is actually overwhelming you more than its helping, is too mentally, physically or emotionally stimulating, pressing buttons and resulting in repeated fatigue or symptoms that suggest your triggers are increasing, not backing off then you need to question whether its right for all the various parts of you. It's just so easy to be led off down a path of becoming overstimulated, thinking you can cope because you are ADHD or must push through when you can’t (I believe we AuDHDers really do require more rest and recovery to cope with our complex nervous system), never forgetting, except at our peril, that there is always that other factor to appease…the autistic side!
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!
Living whole 