Pacing 101

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.

(Finally) dedicated to pacing

I am now forced to humbly admit that most of my prior attempts at pacing, over all the many years of constantly dabbling with it, weren’t really pacing at all because I simply wouldn’t stick at it and would then fall back into old habits as quickly as blink. I always had my excuses at the ready as to why this one thing I “had” to push through was outside the jurisdiction of my need to pace or couldn’t be avoided (a dread of disappointing or letting others down being one of the most consistent excuses) when, really, the whole of life has to become one giant, continuous exercise in pacing to make this whole thing work sufficiently enough to avoid the constant boom-bust cycle of flare-ups and chronic fatigue that potentially get harder to recover from each time.

Being a passenger is not an energy-neutral activity and other hard lessons of pacing

There are a few activities, and these will vary from person to person, that are not as energy-neutral as they look for someone that is neurodivergent. Coming to realise which activities these are, in your daily life, can be a game-changer when learning how to pace in order to gain a more consistently stable footing in your health.

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?

Why “groups” don’t work for me and other AuDHD friendship foibles

Exploring the challenges of making friendships as a neurodivergent woman, perhaps late-diagnosed, following years of trials and tribulations trying so hard to find meaningful connections before you "realised" and navigating some of the things that patently don't work for our preferences (for instance isn't "group friendship" an oxymoron?), also learning how and when to safely drop all those masks.

Learning to ADHD pace…the hardest but most powerful thing you will ever do

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!

Assessing the true price of the deep dive

If you are extremely prone to taking deep dives, the time comes for asking: What is the true price of doing this in terms of its impact on self-care; is it all worth it? What do I gain from this latest obsession? Is my self-care repeatedly suffering, coming second-best to my latest fixation? Have I succeeded in traumatising myself in the name of a few inches of increased knowledge? What did I lose, in terms of blissful ignorance or humanising innocence, when I opened up that latest can of worms? Should I continue or just drop it now, like a hot potato, to reclaim my peace of mind? Can I break this trend of pushing myself too hard, too relentlessly, without first assessing the value of what I am doing or whether my nervous system would rather be doing something else or even has the reserves to cope? Can I allow that it’s not always a waste of time to be less driven or intense? Can I guide my inbuilt intensity into more benign practices that generate joy and not so much discontent, fear and trauma? Can I actually learn to steer this neurodivergent vehicle of mine instead of running it off the rails?

When things go right but your mind is still looking out for things going wrong

Over the course of a lifetime, we can become so very weak at this skillset of taking pause, taking a moment, taking the time to enjoy the view from the top of the mountain before “doing” anything else such as pulling the metaphorical camera from the pocket. Just allowing ourselves to be there in the moment of culmination, to breathe it in, take in the 360° view and allow the cells of our body to drink from the water that will remind us later that things don’t always have to be “going wrong” or dying or destructing. We need to amplify such moments in our awareness…not skip over them. They help us to rebalance all the other moments when things feel like they are always shifting and taking us by surprise and they help us to redress all the hypervigilance and anxiety that seems to want to take us over as we age.