recovery

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.

B6 toxicity? When there’s a reasonable posibility.

~ Helen White ~ 2 Comments

Potentially toxic levels of B6 supplements adversely affecting many people's health are finally hitting the spotlight and, by coincidence, just when I am finding out that they may have been a contributing factor to some of my worst and most frightening symptoms. Sharing the journey of discovery so far.

When the dopamine wears off…avoiding the next crash

~ Helen White ~ Leave a comment

Does dopamine really mitigate pain? If so, what part does dopamine shortfall play in chronic pain conditions such as fibromylagia, neuralgia and in the delayed and often exaggerated post exertional responses of ME/CFS? How does this factor overlap with other dopamine deficient conditions such as ADHD and parkinsons and how can the knowledge of it be used to hack a better life in chronic health cases where dopamine levels play such an intrinsic part?

ME/CFS and neurodivergence: a potential overlap?

~ Helen White ~ Leave a comment

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.

Slowly inching back outside after a crash

~ Helen White ~ Leave a comment

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.

Accommodating both sides of AuDHD is a must!

~ Helen White ~ Leave a comment

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!

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.

Just because you could doesn’t mean you should

~ Helen White ~ Leave a comment

It's all too easy to be guilted into overdoing things; to feel judged and criticised and like we are letting other people down...and why do we always push ourselves, why do we feel we always have to be productive or do at least what we are capable of doing right up to the limit of our energy, using up every last iota of ability that we have? What if we have to learn a a whole other way of being in order to get ourselves out of an ME/CFS crash...what if it's about learning its OK, in fact essential, to hold something back in reserve for ourselves, in fact first and foremost?

Getting out of the boom-bust pattern of post exertional malaise

~ Helen White ~ Leave a comment

When we normalise over-exertion (as so many of us tend to do) we fail to even notice it any more and so we litter our lives with excuses for why we can't stop right now or take time out to rest. "Its tough at the moment but next year will be better" or "I just have to get through this or do this one last thing" we tell ourselves. In hindsight, its possible to see how we have been living as though caught up in, not just one boom or bust cycle but, a whole series of them, like overlapping circles lasting, in some cases, for a day, a week or month and, in others, as long as a year or even longer. Cycles where we have failed to factor in the appropriate respite before the next cycle of overdoing it begins, so we don't ever get the chance to fully recover from one exhausting thing before the next thing starts. These overexertions, all butted up against each other with no gaps in between, can start to systemically overwhelm us in time. Its not the whole reason for ME/CFS but it can be a big part of a defunct pattern that feeds into the repeated crashes and post-exertional malaise that so define the condition. So how do we spot our own pattern and learn from it; more importantly, how do we break out of it and stop it in its tracks in order to regain some sort of stability?

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.