The Crash that Follows the Push of ME/CFS and FM Awareness Day
by Jody Smith
by Jody Smith
It's been about a month since the ME/CFS community pulled out all the stops for our May 12 International ME/CFS and FM Awareness Day. I think we have a great deal to be proud of, and encouraged by. With each passing year this bunch of chronically ill people and the people who care about us make bigger ripples in bigger ponds for ME/CFS awareness.
People have used up their last brain cells and spent their allotment of energy for this day and for the whole month of May. Of course, there's a price to be paid.
There has been a deep calm — or at least, a lack of action — here in my house, and I think in the homes of many members of our ME/CFS community. I attribute this to the push/crash that so often surrounds our May 12 International ME/CFS and FM Awareness Day.
And how appropriate is that? Amidst all the wide variety of symptoms out there, with each of us having our own personal and unique set of them, perhaps the one thing we may all share is the push/crash phenomenon.
For those not well-versed in ME/CFS lingo, I'm referring to what happens when one of us does more than our body and/or brain can handle, and post-exertional malaise or a crash or relapse steps up and takes us down.
Sometimes the offending infraction may have been small, but the cost to the guilty party can be severe and extended. You can pay for weeks for having too busy an afternoon, or for having skipped a rest period or nap.
I know this for sure. It's happened to me more times than I can count.
There is an exquisite kind of irony to the fact that International ME/CFS and FM Awareness Day can initiate our push/crash scenario. And that so many of us in the ME/CFS community can be -- probably have been -- leveled by it.
Hopefully, temporarily. For plenty of us it will be blessedly temporary. Others will be flattened for some time.
A couple of wise and experienced ME/CFS groups literally and officially closed up shop for about a week after the observance of May 12. Smart move. And one that I had on a personal level already put into play. Had to.
I marvel at some of our heroes who organized, outfitted and attended events, and those who did interviewers on either or both sides of the ledger. I salute those who were behind the scenes or in center stage, carrying heavy responsibility for our community.
I appreciate how much can be posted, shared, re-posted, commented upon, and emailed around the world thanks to the Internet. All this opportunity can, however, knock the blocks off of some of our people.
Like me, for instance. And I wasn't doing all that much. I wrote an article, and Shared a lot of other articles on Phoenix Rising's Facebook page and answered some private messages there. Clicked a lot of Likes and Hearts and that kind of thing. Welcomed several dozen new ME/CFS people to my own Facebook page and we talked a little.
By the end of the week following May 12 I was cooked. Not bed-ridden, thank goodness. Not this time. Just mentally empty. I needed to not think about much. I took a lot longer to answer emails and messages.
I stepped away from the computer. I watched mindless TV, and read a book for hours. Mind you, I was happy to be able to do these things. I've gone through past crashes that were severe enough to make reading or watching anything impossible. Even rocking in my rocking chair had been too much.
So I'm really not complaining because it really wasn't too bad for me. But I'm betting that it all packed a bigger punch for plenty of us. And I also had some idea what to expect. Some of our people might be scared by what's happened to them and not know why it's happened.
Which brings me to an important point. And that is, for those of us who are well enough to be able to accomplish something more than lift our head, ingest some food, and possibly get dressed, life can get tricky.
It's a special kind of trickiness with ME/CFS. And it's going to be at different for each one of us. The challenge, though, is the same.
We might talk about pacing. We might call it resting. We might refer to white space. We might use the paradigm of an energy envelope, or our quota of spoons. We might think in terms of surrendering temporarily so as to be able to fight another day.
Whatever terminology we use, we must all keep an eye on our energy meters, and respect the tiny quantity available to us, and make the most efficient use of those dribs and drabs.
A lot of us didn't do that before, on, and after May 12. And now many of us are sleeping. Or should be. Are you sure you should be reading this right now? It's OK to put it aside and look at it later, when you have more strength and more brains.
It ain't funny but then I've always had a slightly twisted sense of humor and my years with ME/CFS have heightened this twist. And every year I allow myself the tiniest of smiles at the following realization.
Our warriors who have been working their tails off and making a bigger and bigger splash in the world's arenas are now, or should be, curled up under blankets, possibly with sleep masks and maybe ear plugs in a darkened room, like a giant global nursery.
Has much of the ME/CFS community rendered itself comatose, leaving nobody in effect to answer the phones? Yes, very possibly.
But don't be fooled. And never forget, we're talking about a Sleeping Giant here. And while this ME/CFS Giant may need more rest than the average juggernaut, the Giant will awaken once again.
And though at one time all we could send out to the rest of the world was our tiny Horton Hears a Who noises, brace yourself. The Giant will be once again gearing up to emit a mighty roar, heard in all corners of the globe.
We just need a little rest first.
Image by Wokandapix from Pixabay