chronic health conditions

Accepting the chronicity of chronic conditions (no mean achievement)

~ Helen White ~ Leave a comment

Realising that you have been, at some level, in denial that chronic really means chronic or that you even have a chronic health condition in the first place can be a learning milestone. Denial leads to frequent lack of accommodations such as pacing, leads to miscommunication with other people and, most of all, sets you up for powerful disappointments when that's probably the very last thing that you need...and there can be another kind of power to be gained from acceptance of what you are really dealing with here.

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.

Being a passenger is not an energy-neutral activity and other hard lessons of pacing

~ Helen White ~ 4 Comments

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

~ 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.

Ehlers Danlos and reproductive health issues…the unsung song

~ Helen White ~ Leave a comment

The very strong association between EDS or HSD and reproductive health issues is seldom talked about, even more rarely studied. Exploring the territory of how apparently more than half of women with EDS or HSD have vulvodynia, am alarming 77% report dyspareunia, so many have enhanced menopause issues that this is often the first thing that really flags up that they are hypermobile in the first place and that's not even touching on all the other issues they may have put up with along the way, such as dysmenorrhea (particularly painful periods), cysts, pregnancy issues and postpartum injury. Shedding a little bit of light on these topics and exploring anything, at all, that helps.

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

~ Helen White ~ Leave a comment

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.

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.

Internalised ableism meets autistic burnout

~ Helen White ~ Leave a comment

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.