ME/CFS

(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.

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!

When things go right but your mind is still looking out for things going wrong

~ Helen White ~ Leave a comment

Over the course of a lifetime, we can become so very weak at this skillset of taking pause, taking a moment, taking the time to enjoy the view from the top of the mountain before “doing” anything else such as pulling the metaphorical camera from the pocket. Just allowing ourselves to be there in the moment of culmination, to breathe it in, take in the 360° view and allow the cells of our body to drink from the water that will remind us later that things don’t always have to be “going wrong” or dying or destructing. We need to amplify such moments in our awareness…not skip over them. They help us to rebalance all the other moments when things feel like they are always shifting and taking us by surprise and they help us to redress all the hypervigilance and anxiety that seems to want to take us over as we age.

Adult ADHD challenge: When you know you need to stop everything for while…but its a real struggle to do so

~ Helen White ~ 2 Comments

As someone with ADHD I can never completely stop or relax. I end up laughing at myself for my lack of ability to sustain even the most inviting moments of peace and inactivity for very long but I am also mortified. Almost as soon as I have clocked the perfection of such a moment, like taking a minds-eye photograph of it, I am already prepared to dismantle it and move on to the next thing. Its as though I am designed to blow-up such moments of completion, some part of me utterly compelled to drop the pebble in the smooth pond, like I just cant help myself!

The importance of finding your place

~ Helen White ~ 4 Comments

So many of us put up with living in less than ideal places and circumstances, especially if we feel we are stuck with them, but what if they are the missing piece of the whole health jigsaw. If we also happen to be neurodivergent, feeling "out of place" can be become such an innocuous-seeming sensation across the course of a lifetime because we become so acclimatised to feeling like a misfit in a lot of situations; our version of "normal". This makes it all too easy to ignore times when we are really in the wrong place or situation, when we should be doing something about it, especially when our health is being badly impacted. Clues might be subtle but we, of all people, are past masters at piecing together all the signs and patterns that tell us there is a better kind of life waiting for us somewhere, one that better fits the way we are wired.

Central heating as a potential trigger of vagus nerve atrophy?

~ Helen White ~ Leave a comment

Central heating can be a blessing but also such a curse. I strongly suspect that there's a need for the living environment to become more closely related to what nature has in mind, per the season we happen to be in. I don't mean that we need to make it frigid and uncomfortable but at least not stuffy, coddled or so artificially consistent...because all manmade consistency does for us is reduce the natural capacity to deal with variety and change (a case of use it or lose it). Personal zone temperature consistency sends confusing messages to a body that needs to still be able to cope with a highly variable world out there all of the rest of the time. If adaptability to change isn't your strong suit (particularly if you are neurodivergent) this can create real problems with the autonomic system and thus your health.