creating a fulfilling life

Living autism

~ Helen White ~ 2 Comments

When the time comes to finally live the autistic life, it can feel both daunting yet potentially liberating but how to go about it. We are forced to question which reality is the real one, the one where we normalise successfully and do all the stuff that looks like having a relatable life (through the eyes of other people) but with terrible outcomes for health, or the one where we are fully cognisant of our autistic traits, meaning that we accommodate them so much better but also meaning that our life inevitably looks much more withdrawn, carefully curated and (yes) autistic by default? In this post I explore questions such as whether and why to seek a formal diagnosis and how to reset social expectations and other boundary issues as I venture boldly into the territory.

The fact I “seem” to be coping with the big event doesn’t mean that I really am!

~ Helen White ~ Leave a comment

My hypermobile neurodivergent way of getting through an event might not be typical and will generally involve a lot of extra strategy and accommodations but it is just as valid as the next person's and, the more I own this, the less disappointed I am with myself or my circumstances. The world does not, in any large way, accommodate people with neurodivergent sensory responses to the environment or their not insubstantial neurological or physical differences, especially if hypermobile, therefore big events are seldom pitched to accommodate us, as a minority factor in the room. The very best I can do is have my own list of helpful methods and tools at hand to get me through these big events my way whenever they happen, with a view to minimising the worst kinds of after effects sufficiently enough for me to be able to hold on to the happy highlights instead of all the low points. Here are a few of my tips to myself in case they are of use to anyone else.

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

~ Helen White ~ 2 Comments

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.

Slowly inching back outside after a crash

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Of course you want to get back out there doing normal things, just as soon as you feel remotely ready, but there's a right time and a right way to do this with ME/CFS. Exploring some of the expectations, the risks, the difficulties and the lessons of inching back outside again.

What is “rolling PEM”?

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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!

Making invisibility more visible as someone with hidden disabilities

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A recent experience I had, as someone living with invisible disabilities, including its positive outcome, just goes to show the importance of speaking up for your needs, of feeding back when things don’t work out and of urging venues and organisers to try harder in the future. Some, if not all, will listen and, in time, things should get better. It will also take a lot more education of the general public for things to really improve, which is something I hope we are all prepared to work towards, as we each do whenever we stand up for our challenges or dare to speak out and educate people regarding what isn’t so immediately obvious about our disability experience, utterly life-encroaching though it may be to us. We have every right to be able to expect to take part in, and enjoy, experiences that able bodied people are able to take for granted and, if it takes a few tweaks and accommodations to make that happen, then we should be pushing for those until we get them. Yes its very hard to do, and we need to pick the right time (for us) to be more vocal as it can take a lot out of us when we are already struggling but we also have to think about contributing, when we can, towards making our invisibility more visible, in all aspects of life until, little by little, people start to see us more clearly.

Pacing 101

~ Helen White ~ Leave a comment

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

~ Helen White ~ Leave a comment

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.

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

~ Helen White ~ 7 Comments

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.