POTs dysautonomia

Super syndrome: taking a unified approach to all the things

~ Helen White ~ Leave a comment

What if there is a constellation of frequently overlapping health “things” that some of us have going on, all of them connected together so deeply and intrinsically that it makes a nonsense to consider them in a piecemeal fashion? Looking into the findings of a couple of neurodivergent medical professionals who share this view I have so long held and ways we can use the information to further our self-understanding and thus empower ourselves.

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.

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!

Making invisibility more visible as someone with hidden disabilities

~ Helen White ~ Leave a comment

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.

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?

(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.

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

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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.

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.