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

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.

Missed signs of Ehlers Danlos during childhood

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

Finally, a diagnosis!

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

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.

Stabilising the autonomic nervous system as a first crucial step

There is no separating the nervous system from the various different aspects of how the body has started to misfire over the years, cumulating in whatever burnout or crash led you to where you now are, however much other provoking factors (such as a virus or accident) might have taken the brunt of the blame because, after all, what makes one person respond to those things differently, more devastating and lastingly, than the next person if its not the nervous system? Post Exertional Malaise is a classic manifestation of this whilst tracking its triggers can teach us such a lot about our personal state of misfiring health.

Ehlers Danlos and reproductive health issues…the unsung song

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.

Considering monotropism

What is monotropism, can it really explain everything about the autistic experience of life, how does it make life extra hard for those with it (in an allistic world...) yet also, conversely, make taking deep-dives into their interests thrilling, joyful, adventurous and full of flow for those who do this, also what could it look like if they were encouraged to accept and embrace this kind of thinking style, enabling, accommodating, protecting and even appreciating it rather than fighting it or making it wrong?

Central heating as a potential trigger of vagus nerve atrophy?

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.

Driven by positivity: an alternate spin on neurodiversity

Considering a hunger for positive feedback, recognition and praise as a main driver for a lot of people with ADHD, leading to a euphoric state on the rare times we ever receive it. Such positive feedback can turn us into a "whirling dervish" of positive energy and enable us to turn all that apparently erratic energy around and apply it to striving, thriving and making good things happen.

Rediscovering your life-force through movement

Apart from being essential for wellbeing and general health, movement can help remind me where all my muscles are in space (given my proprioceptive equipment can be a bit compromised...), can also help me to be upright without my autonomic system always spinning off into a panic at the idea of gravity. Otherwise, when I forget I have a body (I'm autistic so "out of sight, out of mind" is pretty much my modus operandi) I very quickly lose the joy of it! Exploring the importance of having enough space to move about in when you have chronic conditions and are neurodivergent.