Fibromyalgia

What is “rolling PEM”?

~ Helen White ~ Leave a comment

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!

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

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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.

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.

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.

(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.

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.

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.

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.

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.