intensity

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.

How long awaited hEDS diagnosis actually FEELS

~ Helen White ~ 2 Comments

So as it turns out, I'm not lazy, not hypochondriac, not a malingerer, not attention seeking, not making it all up, not interfering where I shouldn't, not feeble (far from it), not "over-sensitive" (ditto), not making a hobby or a hyperfocus out of illness, not collecting labels, not depressed nor anxious (except when the circumstances themselves pushed me that way), not trying too little nor doing it all wrong, not lost in self-absorption, not avoiding being a grown-up...or alive. I have been dealing with a complex multi-systemic health condition with as much grace and determination as I could muster on a daily basis. Unpacking some of the emotions of receiving a long awaited diagnosis.

Reframing PEM and considering how it may be linked to delayed emotional and sensory processing in autism

~ Helen White ~ Leave a comment

How could having more sensory information to process than the next person and delayed emotional processing have to do with post exertional malaise or delayed onset pain and what could any connection between them tell us about PEM so that we can reframe it in a more positive light?

Life in the gap: coercing an AuDHD brain to work within the energy parameters of ME/CFS

~ Helen White ~ Leave a comment

Learning how to slow down, how to pace or stop everything including your overactive mind may be the biggest achievement of your life with ME/CFS when you are also AuDHD because it is THE hardest thing for you...yet slow down or stop you must. The point is, those spaces and pauses between exertion and overthinking, that very void you always dreaded, may hold the very healing elixir, the antedote, you've probably chased after all these years but getting into this state is always doubly tough for you and takes such persistence and focus...perhaps more effort than all the things you ever filled-up all your days with before.

Stabilising the autonomic nervous system as a first crucial step

~ Helen White ~ Leave a comment

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.

Considering monotropism

~ Helen White ~ 4 Comments

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?

Hyper: when your body doesn’t behave in predictable ways

~ Helen White ~ Leave a comment

Curly tubes, slow motility, mystery pain, treatment outcomes that don't "take" for very long, delayed and paradoxical responses and an ongoing tricky relationship with gravity...exploring some of the quirks of living with a hypermobile body.

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

~ Helen White ~ Leave a comment

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!

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

~ Helen White ~ Leave a comment

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

~ Helen White ~ Leave a comment

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?