Still writing with ME/CFS years later

THE MORE THINGS CHANGE, THE MORE THEY DON’T

This is ME/CFS month again, for my nth time – and May 12th is ME Awareness Day again – as I’ve blogged about for several years now (since we got more activists and activism going, including Jen Brea’s Oscar-nominated documentary, UNREST).

And nothing much has changed – I’m still sick all the time (that’s what chronic means), and have no energy, and don’t get much done, and don’t get what I want to do done, and all that jazz.

So I found a wayback post from Feb. 2013 that describes almost exactly the same thing I still live with. No capacity to learn – or rather, no capacity to retain enough energy to make good decisions.

And I’m six years older, which doesn’t help (unless you’re 13 and desperately want to get away from home). We ME/CFSers are not spared the vicissitudes of aging, and are probably much less capable of putting in the effort that might stave off the ravages of time (exercise, putting energy into good living and good eating, etc.) than those whose life circumstances are easier.

I say easiER, rather than easy, because Life isn’t ever easy (ask any cosseted princess).

Remember I don’t do much editing on these oldies but goodies, but it is proof of nothing much changing (except moving to California!!!) yet.

I’ll let you be the very first to know if something improves!


Writing with ME/CFS #1 – surfing the web for THE ANSWER

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CAUTION: These posts tagged CFS are a product of my struggle to write in spite of a chronic illness that has brain fog as a side effect. They are probably not interesting except to people who live with/try to write under similar circumstances. They are not intended to be whiny – though they will often sound that way. They are intended to be factual, and to help me find workarounds.

I wouldn’t bother except this is my blog, and I need an outlet, and a small subset of readers may find something helpful. Writing helps me sort things out. You have been warned! Welcome!

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The mornings when the psychic energy to block the web is missing,

I roam the small set of sites I follow, looking for someone else to give me words to read.

Today’s excuse was that DH called me from work before my brain was on: he’d left important papers in the front hall and a frantic romp through two computers and a memory stick were required to email him usable copies. Other days it’s been a call from a doctor’s office requiring me to do something immediately, or a call from my dad needing a bank transfer…

I’m seeing a pattern here: whatever the attention-consumer is must be dealt with RIGHT NOW. PWCs (persons with CFS) have a much smaller amount of usable psychic energy – which I will define as the ability to MAKE myself do something as well as the ability to ACTUALLY do something – than normal people. It’s part of the brain-fog problem. If I could jot the interruption on a sticky or my ‘gathering’ sheet or type it into Things – and deal with it in the normal course of business (maybe today, maybe not until next month), it would lose much of its power to consume. But I can’t – this is an EMERGENCY and must go to the top of the list. Worse, it must be done NOW.

Somehow, I come up with the energy to deal with what needs to be done – and it gets done – but there is an aftermath, a surcharge if you like, and the accomplishment is followed by a period of being awake but completely non-functional. We PWCs really can’t afford adrenaline – it takes much longer to metabolize it.

During that aftermath I often surf the web.

I’m looking for THE ANSWER. What’s the question? Who knows – who cares? Something in me wants someone else out there to tell me what to do, now, in such an authoritative way that it drags my mind out of the hole and gets it to work again.

There’s nothing there. I have a file where I record the ‘nuggets’ gleaned from surfing, the things I am absolutely grateful I have discovered. A short list (Dec. 2012-Jan 2013):

I: Standing desk, walking desk [PV + comments]          3:02 PM
I: Boomer Novels – and Boomer Cafe website [PV]       9:41 AM
I: Sworn Secret,  Amanda Jennings [Dead Guy – Lynne Patrick]
E: Friend – Have started Freedom: IT CAN WAIT        11:17 AM
I: Sharon Reamer. Good book video, cover [PV ->]    12:27 PM
I: Dropbox – saving your information         [PV?]          12:27 PM
I: Reviews [PV], bloggers charged with defamation    12:29 PM
I: Decision fatigue – and sugar!

I: means the nugget came from the internet, E: that the information was in an email. PV is thepassivevoice.com.

Looking at the list,

I can see that many hours of surfing went into relatively few really critical pieces of information – and ALL of them could have waited. Until the day’s writing was over, at least, or until the next day. In the case of late ones, I was surfing instead of going to bed, thus mortgaging the next day’s writing, for the relatively small pleasure of today’s surfing. I KNOW these things – it’s a little daunting to see that my precious nuggets are so irrelevant.

Back to the question of Why? I think it is because, like playing solitaire or sudoku or a million other games, the ability to do something that looks as if I’m using my brain – ie, being human – is required to keep me sane. And I have used up the ability to be creative, so I settle for the APPEARANCE of creative: Look – I solved another HARD sudoku puzzle! I’m ME. I’m functional!

This is data.

I don’t think I’ve put it quite this clearly before: human brains WANT to create, to ‘do something useful with their time.’ If I can’t have real, I will settle for apparent. It’s Catch 22: if I have the energy to get myself out of the loop, I’m not IN the loop. If I’m IN the loop, I don’t have the energy to get myself out.

I’m learning. I can restore SOME functionality when I can put myself down for a nap. Afterward, most of the time (depending on the surcharge), there is some restoration of functionality for that day, that time – I may even get something done.

THE ANSWER: to be normal.

It’s not on the web. It’s interesting that after 23 years I still look for it. The brain wants what it wants: to be the way it used to be.


It’s over 29 years now.

Still here, still broken, still trying to find an answer I’ll remember when the brain refuses the jumps.

I am so boring!

Why do you surf?

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