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
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?
The very strong association between EDS or HSD and reproductive health issues is seldom talked about, even more rarely studied. Exploring the territory of how apparently more than half of women with EDS or HSD have vulvodynia, am alarming 77% report dyspareunia, so many have enhanced menopause issues that this is often the first thing that really flags up that they are hypermobile in the first place and that's not even touching on all the other issues they may have put up with along the way, such as dysmenorrhea (particularly painful periods), cysts, pregnancy issues and postpartum injury. Shedding a little bit of light on these topics and exploring anything, at all, that helps.
The mindset of "chronic" can close our minds to all the small and medium sized wins, the subtle but indisputable improvements, the learning curves and fresh starts. Its just so important to take pause to appreciate all the subtle ways that things have improved, been overcome or even just taught us beneficial things about ourselves and life in general, often with such positive outcomes when it comes to increased confidence, optimism, sense of progression and even joie de vivre.
Central heating can be a blessing but also such a curse. I strongly suspect that there's a need for the living environment to become more closely related to what nature has in mind, per the season we happen to be in. I don't mean that we need to make it frigid and uncomfortable but at least not stuffy, coddled or so artificially consistent...because all manmade consistency does for us is reduce the natural capacity to deal with variety and change (a case of use it or lose it). Personal zone temperature consistency sends confusing messages to a body that needs to still be able to cope with a highly variable world out there all of the rest of the time. If adaptability to change isn't your strong suit (particularly if you are neurodivergent) this can create real problems with the autonomic system and thus your health.
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.
I do believe that constantly drip-fed overstimulation traumatises those of us without appropriate filters and barriers to cope with sensory experiences that are not designed to accommodate neurodivergence and in such a way that compounds with time, affecting us in ways that other people can’t even begin to imagine as they’re simply not having the same experience as us. Quite literally, the only thing we have in common with the majority of people who are apparently dealing with the exact same situations as us is that we’re physically in the same space…because the way we experience that space is a whole other matter. We can try to explain (with variable degrees of success) but we can never take them there with us so they understand! Until we give this effect the most appropriate name, trauma, we don’t deal with it appropriately either…because we just keep on sucking it up and wondering why we struggle and burn out so often and in so many apparently unusual or creative ways. Yet in the case of any other trauma we would work much harder to notice when it was happening, to put a stop to it and heal from it…but how do you heal from something that is relentless and ongoing, which you have to expose yourself to in order to be part of anything in life that has something to do with being around other people or in the world as it has been made to be, which is highly overstimulating and often too much for our differently wired systems?
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.
The very fact of constantly having to adapt, to meet alien-feeling situations on their terms, when others just slide into circumstances like a hand into a well-fitting glove, exhausts systemically when we don’t even notice how much we are having to do it, how much we are constantly having to bridge the gap between what is and how we are. This may have been damaging our health for years, as surely as long term smoking or heavy drinking, only we didn’t realise it until it was too late to avoid the consequences to our health. This is why I am passionate about helping other high adapters, women especially, to realise, embrace and advocate for their neurodiversity early on in life. It seems to me, autistic women often have a sort of hypermobility of a more subtle kind; one that enables them to become whatever people expect of them…but at what cost.
Living whole 