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
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.
When was the last time I just sat there and did absolutely nothing for long-ish phases of time? When did I, with hands on knees, just sit and watch the birds out of the window and let my mind become blank for more than just five minutes at a time? In fact, when do I ever allow myself to be still, without my mind flooding with a dozen new and ever-more more jet propelled urges to do half a dozen other things the moment I allow myself to get going again…and then, once I get going, becoming so hyperfocused I forget to get back to my pacing? Every time I allow myself a short period of activity, I risk becoming embroiled again. It’s hard…probably one of the hardest things (if not the hardest) I’ve ever attempted but the few times I managed to really master pacing, last week I began to feel noticeable benefits that I find hard to explain in words but I felt them clearly enough. There were distinct shifts in me that I hadn’t experienced for a long time, some of them for years, which manifested slowly and subtly like ghosts of a new experience stood on the periphery, contrasting starkly with all the stuck-feelings of chronicness. The best I can explain is that my nervous system felt less compressed or jangly, my body felt less hypertonic and my endorphins felt increased, in short bursts, that almost felt like excitement or waves of appreciation and something bordering on joyfulness. I can vaguely recall feeling like that much more often, even perhaps frequently, back in the good old days, back before ME/CFS took hold in such a way that it has become a whole other way of life but I think it had been a very long time since I had been there, even for a moment, until I started properly pacing last week and now I hold out for experiencing even more of this. It turns out pacing is not this passive thing, the "absence of activity" that I feared so much but this incredibly proactive thing that lets other good things happen.
The constant play-off between the two sides of AuDHD can be such a challenge to live with as well as such a blessing. Having parts that both provoke and complement each other is precarious in the extreme and not for the faint-hearted. It's also far too simplistic to describe ADHD (or autism for that matter) as a superpower, not to mention dismissive of its many hardships but there can be some perks when it comes to recovering from burnout, ideally before it turns into a chronic state. Exploring how ADHD can throw you a lifeline at times of health crash but also the importance of pacing...before you allow yourself to become burned out yet again!
Autistic joy comes in some unusual packages but I think we all get to know what our personal ones are when we pay attention so it's just a case of owning up to them and curating them into our days, even more so when we particularly need them. When we burn out, it becomes even more important that we draw on our arsenal of sensory stims and other tools to help reboot our nervous system, which will take as long as it takes...our bodies won't accept any shortcuts or short rations, perhaps even more so as we get older. Giving permission to ourselves to indulge in these things is where true autistic self-care starts and our best autistic life takes shape, no matter how "old" we are when we first realise this.
A massive breakthrough has shown me that recovery is possible and that it's got far more to do with emotions than I ever believed possible. Sharing the massive optimism of the TMS approach to chronic health.
Burnout or even trauma can be a very real risk if you are autistic and find social engagement really challenging or have poor track record; however, it can also be a highly positive "stim" from which you may get far more positive effects than you know. How to reconcile this two pony team, and the completely different directions they pull in, can be a lifelong conundrum if you happen to be both autistic and ADHD but getting it right can potentially lead to far better health and a vastly improved quality of life.
When we notice how our bodies work so closely (as does eveything in nature) with the cycles of waxing and waning, we gain the tremendous power that comes from accepting what is and ceasing to resist the natural rhythms that can also be our best source of strength when we harness them for our recovery.
Women with ADHD tend not look like men with ADHD; we often hide it, we work around it, we express it differently and we harness it in ways that allow us to excel and do our suffering in private, we even seem to feel about it a different way to most men, so its absolutely essential to find other women and hear what they have to say if you are going to work out if this is really you!
Do you have marked seasonal difference in your health symptoms? Many people do! However, when we learn to accept them, know them and work with them we get to find a new kind of equilibrium in spite of them, and that brings its own seasonal gifts.
Living whole 