ME/CFS

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!

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

~ 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.

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.

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?

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.