This is the first of what I suspect will be a trend of short punchy posts that don’t interfere with my intention (as stated in my last one) to pull back from the self-imposed pressure of writing copiously or regularly for my blog. What I intend to trial is sharing short salient nuggets that I feel might be useful observations without allowing them to take over my day or my energy.

Today’s, as the title suggests, is about the “activity” of being a passenger in a car, bus or train, that “thing” I suspect a lot of us tend to assume is fairly energy neutral or at least low in the energy-expenditure pyramid. Because, when you are having to pace your activities as a way of life for your health, these things are important to know.

However, I am now using the Visible app (activity tracking for invisible illnesses) complete with armband, as mentioned before, and finding it incredibly useful for understanding my energy usage and daily triggers, seeing in black and white what tends to deplete me the most and learning how to pace myself much more consistently as a result. A few weeks of use into this new initiative, I can report that I’m enjoying much more energy and sleep stability and therefore less flare-ups and crashes because off the insights, and mindsets, the Visible app is affording me.

What I have learned now, for once and for all, is that is sitting in a car driven by my husband (or anyone else for that matter…though he is the least likely companion to deplete my energy as he makes no demands of me) does not constitute “a rest” period or “a chance to recover” as I have long tended to tell myself; nor is it energy neutral (far from it) because I can see, quite visibly (which is the whole point of the app!) how quickly my energy is being depleted for the whole duration of the journey. The app, which uses algorithms geared to what has been learned in studies about chronic conditions, utilises a system of pace points, which are measured against a daily budget set to your personal track record, to measure where you are “at” in your budget at whatever time of your day you look at it (it also sends you alerts if you are likely to go over budget).

I can see the rate at which mine clocks pace points accelerating whenever I sit in a car on a journey, even when I am not talking or particularly looking out of the window (I have learned to keep my gaze in soft-focus on journeys to keep stimulation to a bare minimum). I strongly suspect this is all because I am autistic and very highly sensitive to stimulation…I see so much, I feel so much, I’m responding to all kinds of sensory cues much more rapidly and intensively the whole time I am in a vehicle. Of course, this can then depend on where we are travelling…city roads are much more likely to drain me than country ones…but the effect is similar in both cases; car journeys very highly overstimulate me and my pace points reflect that. The longer the journey, the more depleted I am, regardless of what of I am doing in the vehicle.

So, for example, I travel to my physio appointment once a week by car. My husband drives, I “just” sit there and it takes about 35 minutes. We then park up in the same carpark each time and walk a short distance to a quiet bookish cafe so that I can decompress before my appointment, which is fairly nearby. I enjoy my appointments and don’t feel at all stressed in anticipation (my therapist is neurodivergent so I don’t even have to mask in them). By the time I reach the waiting room of my physiotherapist, a quick glance at my app will tell me, with stark consistency, that I have used up all my pace points for the day. Not just for the morning (it is now only midday) but the whole of the day. So anything else I do for the rest of that day…the treatment appointment itself, lunch, walking to the car, journey home, etc., takes me wayyy into deficit.

This tells me so much about, and is entirely consistent with, my track record of attending any kind of treatment appointments for as long as I can remember. Then once there, unsurprisingly, I find any kind of hands-on treatment and/or conversation with a therapist deeply energy-draining, potentially triggering and all of the rest of the things that can be too much for me during and after a session, even though I enjoy them and even though they may be potentially neutral or even soothing/relaxing for other people to undertake, I’m specifically thinking of things like massage here (topic for a whole other blog). It feels remiss of me not to at least drop the phrase “sensory defensiveness” into the pot as it is just so pertinent to all the diverse ways neurodivergent people might respond to the kind of circumstances I describe.

Of course, this situation only reflects where I am right now in my health journey and will, I expect, improve the more I generally learn to pace and avoid overdoing things, strengthening my baseline of tolerance and energy, something I have never worked harder at than right now. I always make sure to have a gentle day the day before my treatment and plan for nothing at all the day after, making anything that I manage to do on those days a bonus but never an expectation. The more I adhere to the mindset of pacing, the more my nervous system settles down so then I make increments of headway, step by tiny step…but when I see improvement I mustn’t, then, abuse that headway by pushing myself a bit harder again (which is a tripping point for my ADHD, so I am having to be strict).

The Visible app helps because it provides black and white information that can’t be argued with, which my neurodivergent brain prefers and will more likely take seriously than some arbitrary construct that “pacing is good for me”. In a sense, I am now pitching myself against an invisible rival to prove I can do this thing, I can really crack it and hope to interrupt the long-running trend of setting myself back by overdoing things that other people can apparently get away with but which I clearly can’t. I have to learn what works specifically for me, not just for the short-term in order to get over a construct of “illness” but so that I can live better as my long term neurodivergent self. None of the fundamental truths underlying how I happen to struggle more with certain activities and exposures are ever going to alter; I am made this way for life and now need to live in a way that is more mindful of the fact than I used to, in order to accommodate that.

Coming to realise that certain mindsets I used to have are misguided is powerful: mindsets such as being a passenger being a low energy or neutral activity and (another one) sitting in a room having a friendly chat with someone I like being, likewise, energy neutral or even relaxing – wrong! Since the latter involves “being social”, which demands far more effort and energy from autistic-me than the next person, it actually depletes my energy hugely…making it something I can only do in absolute moderation, seldom in a context of multi-tasking and only ever when starting from a stable footing, which Visible is helping me to check on a daily basis (at least until I gain a better learned sense of what this feels like for myself). These activities may seem undemanding to someone else but, for me, they can be an olympic sport and I need to own that!

Only relaxing is truly relaxing. Some gentle activities I enjoy are inherently relaxing and give back energy. Others (such as writing for an audience…effectively making it a “social” activity) deplete energy, as I shared before, even though I quite enjoy it, which is why I am cutting it back in the interests of truly making pacing a way of life from now on. So I will end this post here and sign off by saying that I will, once again, only see you when I see you, whenever that happens to be.

Useful links, which I do keep adding to, can be found in my resources sections above.

UPDATE: Since writing this post then experiencing another severe crash through lack of appropriate pacing, I’ve started using Classic Pacing for a Better Life with Me – Ingebjørg Midsem Dahl, a very highly recommended handbook of pacing to manage ME/CFS, the most useful book I have found with many positive reviews.