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.

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.

Unmasking the “and this…and then there’s this…and this…” long symptom list of chronic conditions

If you’re in one of your health troughs, your very worse of days, weeks or months, the times when you’re a fortune hunter out there on all the forums and websites, ever hoping for a breakthrough piece of insight, remember this too will pass and that it’s not always going to be this intense, though it sometimes feels like it is. And importantly, you’re not all alone. There are others like you, with their two hands overspilling with overlapping and often utterly bewildering symptoms that get precious little ear from medical professionals. We may feel isolated in our struggle but there are a lot of us out here.

Internalised ableism meets autistic burnout

Neurotypical expectations tend to come at all of us from every imaginable angle when we are autistic but, when we also internalise them and bounce them back at ourselves from the inside, the effect can be toxic because there is literally no getting away from that ableist voice now; its there night and day. Until I am prepared to notice that the voice saying these things is not mine and stand up to it, and to anyone else having unrealistic expectations of me given my autistic take on certain situations that bother me more than they can imagine, I risk repeatedly throwing myself back into a burnout status because I will never allow myself to fully recover. Every time anything that looks like a “normal” or so called “reasonable” expectation comes my way, I will simply roll over and surrender to whatever is expected of me, abandoning my desperate need to stop doing these things or putting myself in the way of highly stimulating and demanding situations and exposures in the name of trying not to rock the boat or stand out as different.

Sensory burnout…and learning how to curate your particular version of autistic joy as a way out of it

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.

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.

Oxalates in review: one year into a lower oxalate diet

A year into a lower oxalate diet, what successes can I report? As it turns out, quite a few when I compare my far-less sensitive life now with the year before I made these changes, not to mention the biggest shift in symptoms and general health stability for years. Read on for a run down of all the improvements that I'm now appreciating in the rear view mirror.

Adult ADHD challenge: When you know you need to stop everything for while…but its a real struggle to do so

As someone with ADHD I can never completely stop or relax. I end up laughing at myself for my lack of ability to sustain even the most inviting moments of peace and inactivity for very long but I am also mortified. Almost as soon as I have clocked the perfection of such a moment, like taking a minds-eye photograph of it, I am already prepared to dismantle it and move on to the next thing. Its as though I am designed to blow-up such moments of completion, some part of me utterly compelled to drop the pebble in the smooth pond, like I just cant help myself!