Music festivals and the like: The biggest win isn’t pushing through but getting real about what you can and can’t do

As someone who is both autistic and who has disabilities, I've learned the hard way that the most important thing is to keep getting ever closer to living within my actual capacity (not some pipe dream based off "what I have done in the past" during all those years when I tended to try and normalise my behaviours), knowing my limitations, tailoring my life more and more to what feels good without all the compromise and stepping away from circumstances that have too high a toll, in terms of physical consequences and overstimulation from crowds and such, to be any good for me.

ME/CFS and neurodivergence: a potential overlap?

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.

Accommodating both sides of AuDHD is a must!

If you are AuDHD and a situation that is meant to be working out for you is actually overwhelming you more than its helping, is too mentally, physically or emotionally stimulating, pressing buttons and resulting in repeated fatigue or symptoms that suggest your triggers are increasing, not backing off then you need to question whether its right for all the various parts of you. It's just so easy to be led off down a path of becoming overstimulated, thinking you can cope because you are ADHD or must push through when you can’t (I believe we AuDHDers really do require more rest and recovery to cope with our complex nervous system), never forgetting, except at our peril, that there is always that other factor to appease…the autistic side!

What is “rolling PEM”?

Rolling PEM (post extertional malaise) tends to come on quite late after the multiple exertions that caused it, often creeping up on you unseen and then it comes on BIG. Its a trickster because it can even feel good at the time it starts accruing…I hear just so many people saying that they felt so good while they were in the thick of pushing through the big project or doing more exercise than normal or handling the new responsibility at work, that they felt like they were over ME/CFS; that they even thought that maybe they were getting permanently better at last, that it was a sign that they were ready to take on more. At the height of the adrenaline surge, you can feel as though you are more than coping, that things really are improving, that you are putting chronic illness behind you at last, so you then feel more confident to take on more of the "normal" things than you would otherwise dare...until, suddenly, it has the last laugh! I recently heard a description of it that went along these lines: if normal PEM is a debt that you always have to pay back after the energy overspend, like repaying a bank loan, then rolling PEM is like having to pay back a loan shark with unimaginable amounts of interest added on top. You really don't want to be indebted to that kind of debt collector because it will be utterly ruthless to deal with; there will be no more negotiating or delaying to be had, absolutely no leeway for extenuating circumstances given!

(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.

Places that deplete

As an autistic person, some places instantly deplete me like I have taken a chemical bath or eaten something off my allergy list…the effect is that instantaneous. Exploring the importance of place as a primary factor in sensory processing and other aspects of neurodivergence.

Autistic burnout and the dichotomy of “living to work” when your reality tells you it’s the other way around

All my life, I have struggled with the fixed cultural idea of "work", the ability to perform a job of work, to succeed at it as others do and to not burnout when I have one (having done so in every job I have ever had). I have discovered this is yet another common factor of autism and that it is profoundly linked to chronic health issues, to lifelong feelings of shame, of not belonging and of "being a failure", associated also with strong desires to work differently to mainstream and to get out of the present culture, change priorities around and do something different with life. In fact, an autistic viewpoint on some of these things could be of great value in these times, especially post-pandemic and faced with some of the current challenges. Exploring some of these things today.

The long-lasting impact of parenting style on the HSP child

Today, I want to share an article that resonated with me very much so, for the main part, I want to direct you to that article. By way of an introduction, I want to ask any of you that identify as a Highly Sensitive Person (especially those who struggle with emotional, health or other issues, … Continue reading The long-lasting impact of parenting style on the HSP child

Choosing my edges

We all need some sort of containment, a reliable edge to our experiences, to enable us feel held and supported in life...and belief systems can do this for the majority of people (to a point). My neurodiverse way seems to have required that I build by own edges from scratch, plucked from a cacophony of sensory experiences and turned into the life supporting routines, rituals and focal points of my life; some distinctly more supportive than others (but getting there). Exploring the need for edges and how to make them better - Asperger's style.