WARNING: DETAILED ANALYSIS OF A FAILURE. MAY BE BORING.
It is my nature to analyze ‘what happened,’ especially with the physical and mental details of what it is to live – and try to write – with ME/CFS, and the only way I have of remembering for sure is to write them down.
I share – because there may be useful information there for others, with or without CFS.
The beginning: when I could have and should have made a small decision
We’re sitting watching TV (the second part of Luther, Season 4), and it is exciting, as TV shows go. This is relevant.
The text comes from child in NYC at 9:49 PM: “I’m getting in at 11:08.”
I text back: “Will pick you up at 11:08.”
This is our system: if I don’t confirm with the correct time, we’re not good yet, because I’ve gotten it wrong before. And she had to wait at the train station.
It’s a good system. I know when she’s getting in, she know I know, and we both have it in writing.
I don’t have to remember.
The MY problem starts
But note: at 9:49 she is already ON the train. And I have one hour and 19 minutes before someone has to be at the train station to pick her up.
It’s still good – and she doesn’t know what train she’ll be on unless she’s either on it, or is close, and knows she has enough time.
There’s always another train (until 2 AM? sometime, and then they start up again a few hours later) from NY to NJ.
At worst, she’ll spend an uncomfortable few hours sitting in the train station.
I mention the arrival time to husband sitting next to me.
He says (and this is the crucial bit), “I’ll pick her up.”
The next bits are on me, and are why I’m writing.
I said, “If I have to get her, I need to take a nap before.” See? I know my limits.
He says, “I’ll go.”
The problem sticks up a finger to the wind
We watch the rest of the program, another twenty minutes or so, chat about the ending.
I see what I should have suspected, given how the last couple of days have gone: he is falling asleep.
I say, “I’ll get her.”
He says, “You sure?”
I say (big lie, it turns out), “I’ll be okay. It’s only ten minutes to the train station.”
He says, “Okay.”
It’s now about 10:10, maybe 10:15 (reconstructing from memory here).
the MY problem compound – because I’m not making good decisions
And this is where I made my fatal mistake (well, okay, not fatal fatal, but fatal as in fatal mistake): I futz around a bit putting my embroidery away, and don’t head straight up to bed for a nap before picking her up, because I’ve been skipping that last night lately (it happens inconveniently in the middle of watching the little bit of TV or a movie we do in the evenings – which is also our chatting time for the day).
But I forget that it doesn’t matter if I’m sitting at my computer wasting time, surfing, writing an email to a friend: I am not risking anything major by missing that nap and being rather non-functional. After all, who can tell what level of non-functional I’m at late at night, and I ALWAYS resist lying down for these naps I need, because that’s what mental two-year-old do.
He trundles up to bed, I look at the clock – it’s now 10:35.
And I’ve just, by being non-functional already, priced myself out of that nap.
The MY avalanche begins
Because I do what I should have done when I said I’d go: the calculus of napping and time and leaving the house that is required – for me to be a safe driver on the road.
Here is what I HAVE to do: start getting ready 10-15 minutes before I need to leave the house, dressed, with shoes on, having my purse and PHONE with me. And my driving glasses, which I don’t keep in my purse all the time necessarily because I have two sets – day and night – and keeping them both there makes the purse too full and heavier.
I need to leave an extra minute or two if I decide to wear my leg braces. They’re an annoyance when driving, just a bit awkward, but help if I need to walk or stand more than a minute. I decide to just put on sandals. It will take me longer to walk to the car, but I won’t have them on while driving, and I won’t have to put them on.
I need to put clothes on, because I am in jammie-equivalents 99.99% of the time.
I need a pit stop.
I need to get out of the house, get into the car, and settle the controls and mirrors. I know others have used my car, and they won’t be in the right place.
The avalanche gets a’rolling/sliding
So I look at the time again, and there MIGHT be time for a shorty – a 10-15 minute mini nap (oh, how I wish I’d taken it!), but only if I get a move on, make the decision, and MOVE.
This is me, non-functional at night. I don’t make the decision.
Instead, my stupid mind moves to ‘what I need to do to just drive safely to the train station.’
If necessary, she can drive back. Unless she’s too tired.
I decide: Diet Coke.
I know it’s late at night, and caffeine after 3PM is a huge no no because it keeps me up at night.
But we’re in not-thinking-straight-crisis-mode now, and the Diet Coke WILL give me the kick I need.
I can take just a sip, right?
I change my mind: I won’t drink it before I leave. I will take it WITH me in the car, and that way won’t use it unless I need it.
I get dressed, grab my purse, put the sandals on.
One last pit stop and out to the car.
I sit in the car, adjust the mirrors.
And yup, you guessed it: it is now 10:55 on the car’s clock – and I forgot to bring the Diet Coke.
I figure out I probably have created enough adrenaline to do this.
It would take me 5 minutes to walk slowly back into the house, climb the stairs and get the forgotten Coke, and get back to the car.
I know the train may or may not be on time, it sometimes takes them a long time to let passengers off, and there is a long walk from the far platform, and the Hamilton Train Station is a relatively safe place for her to wait for me if I am a few minutes late, even at 11 PM.
My mind emphasizes ‘relatively.’ I decide to skip getting the Coke, go the ten minutes or shorter in my immediate future, and get there on time.
Remember, these are all MY decisions. I want to be the perfect mother, saying, “It’s fine – I’ll get her,” to my husband, and showing up on time for my daughter, then one who can be counted on in an emergency to do what’s necessary.
Never mind that I’ve CREATED the EMERGENCY.
Because I so often can’t do these things. Because it is humiliating to be sick and ALWAYS dependent on other people. Because I rarely leave the house, and this is a short trip which should be within my limited capabilities. Because, because, because…
And the folly succeeds!
I do it.
I drive to the train station – and hit ALL the red lights on the way, at their maximum durations. It doesn’t matter – I’ve allowed for the maximum times, ten minutes.
I get to the train station, and the train pulls in as I stop in the little parking lot opposite the entrance.
In a couple of minutes, the passengers start coming down the long staircase from the overpass.
This time she is the second person.
I flash my lights, she comes on over, and we head home.
On the way home I mention a tiny bit of the above. She says, “I could have driven from the station.”
I say, “I know, but I’m fine.” With a second person in the car, my anxieties calm down just fine.
Another bad decision? Probably. But easier – and we really are that close to the train station. 5 minutes – if you get all the green lights. Which we did. On the way back, of course.
No big deal – picking someone up at the train station and driving home.
The beginning of a really bad night
She says she’s tired. I tell her I’ll put the chinchilla to bed if she will feed Gizzy her treats. We agree. I add ‘put out foods for Gizzy’ to my pre-bedtime list. It’s a short chore in principle. If Gizzy has been out of her room, it may take longer to get her back if she’s hiding under the living room couch and I have to chase her out with a flashlight (the light, not the metal part).
Later, it will turn out that Gizzy never left her room (she sleeps under the bed) because it was Italian-American weekend at Mercer County Park, and they ended with fireworks, and fireworks turn Gizzy into a shell-shocked ball. No biggie – I leave out her food and close the door earlier than usual.
Now the payment for my folly really starts.
Daughter goes up to her nightly struggle with getting to sleep.
I am too wound up to go right to bed, but manage to force myself into bed at around 2AM, not too bad for me.
And the night of horror starts.
Why? Because I have broken the basic rule: you’re NOT normal
The root cause is the BRAIN FOG I live with.
The proximate cause is that I can’t metabolize adrenaline (which I know). My body insists on twitching every few seconds, just as I’m starting to fall asleep. It requires the FULL set of stretches and isometrics I do to get rid of the twitchies.
There are oh, about ten, bathroom trips. I have minimized water, though really thirsty. Doesn’t matter. I have a few sips.
I go up and down the stairs too many times.
I have a small protein shake – which, because it is full of ice, usually makes my core temperature go down and lets me get sleepy.
I end up eating two Atkins bars in the middle of the night.
I get up and play sudoku on the computer until I realize I cannot make that last column add up no matter how hard I try.
I spend time lying there with the lights off, exhausted, knowing it’s the end of the world, and I’m having trouble even doing my meditation breathing, and I’m going down hill so fast it’s scary, and I’ll never be any use to this family, and how could I possibly have thought I could do something useful like picking my own child up at the train station?
Eventually, around 5:30, I finally get to sleep.
Cost accounting: I lose a day of my writing life again
My happy body gets me up at 9, later than I’d generally like, ridiculously early after nights like this.
I put myself back to bed after what seems to be the twentieth bathroom trip of the night.
I sleep until almost noon.
And THEN it finally hits me: this is the AFTERMATH of adrenaline, you idiot. It happens every time – which is why you don’t allow yourself emotions, and you certainly don’t allow yourself adrenaline.
This is MY fault.
My decision-making functions don’t work, and especially don’t work when I’m tired. And go all to hell when I push them.
The conclusion: write it down.
Maybe it’ll serve as a cautionary tale, even though it’s a stupid little story of a single night.
But, you see, it will cost me today’s writing time (for fiction) because I’m singing at the Princeton U. chapel at the 4:30 Mass, and to get there for practice I have to leave the house at 3, which means, backtracking, I have to be in BED for the pre-nap by 2:10, and have to allow for something to eat in there somewhere, and I desperately need a shower, so I’ll have to nap with wet hair…
I started writing this at 12:03, and it’s almost 2 PM.
Another bad decision? Probably not. I can’t write fiction under these conditions – too jumpy.
Why do I write these things in such detail?
Because I’m working on a non-fiction book, working titled PAPER BRAIN, because no one has solved this for me in the almost 28 years I’ve had this stupid disease, and if I don’t write it now, I’ll forget.
This is, by the way, why Pride’s Children: NETHERWORLD will take a long time.
But I’m working on it.
And I could go on in this vein for another hour. Husband came in, and said, when given the mini-summary, “I could have woken myself up.”
I won’t even tell daughter – she has enough on her plate, and did NOTHING wrong.
But some day I’ll read this and remind myself, and maybe I’ll get smarter, or at least remember.
Or someone else will.
And I will continue to try to avoid adrenaline, the adrenaline I thought I wasn’t going to create or need – last night.
This was pretty much the way it happened. Stream of consciousness writing.
Don’t pity me. It’s my life. I try to learn from it.
I’m okay. I’m going for that nap – it’s 2:07.
Drop words in the box if it resonated. Thanks!
I keep forgetting: if you like the blog posts, consider buying the book in the sidebar – it’s written by the same detailed idiot with experience.
Copyright 2016 Alicia Butcher Ehrhardt
Hi Alicia – I found you through a comment on Writer Unboxed and had to comment on this post because I, too, deal with a chronic illness: rheumatoid arthritis. I get the brain fog to and the crippling fatigue. And if I overdo it one day, boy, do I pay for it the next.
I’m anxious to hear more about your non-fiction book. I’ve tinkered with the idea of trying to write some essays or something on how to stay creative when you’re battling a chronic illness. There’s a terrific support community for those with chronic illnesses, but I don’t think I’ve found one that is for creative people – like writers and artists – who deal with trying to keep up with their creative pursuits while battling chronic illness.
Anyway, I tinker with the idea, then I think, “you can’t even manage to get your darn novel done! How are you going to embark on another project?” So it gets shoved to the backburner. At this point, working a full-time job and raising a teenager and keeping up with the household (though my husband is FANTASTIC about doing housework and cooking), takes up almost all of my energy and what little is left I try to devote to writing.
Thanks for sharing this insight into your life. 🙂
Hi, Melissa – welcome to my jabberings. Delighted to have you.
I have memory issues in remembering detailed events which are the same, more or less, day in and day out.
So a while back I got into the habit of jotting down notes about what was going on – rests, meals, timing, meds – and the easiest place to store these notes has been in the journals that I keep while I’m writing each scene (which is a fairly complicated process because I chose to write dense layered fiction slowly). I save these pieces, think about them occasionally, and try to see if there are patterns I can take advantage of to extend that hour or two of my brain being in the creative zone.
I can’t write without my maximum brainpower, and I have a limited amount of that, but I’m also having trouble because, once I feel better for the day, my mind thinks it’s going to last! Even though I know intellectually it won’t, even after almost 28 years hope springs eternal. So I often want to spend a little of my ‘good time’ doing something frivolous, instead of getting right to work.
I’ll take your lovely comment as an endorsement of the Paper Brain book about what I’ve learned about me, knowing some will apply to others and some won’t, trying to generalize on what you’d need to take your own data on. Real research – given the vastness of the topic – is impossible, and not my interest.
Do you think if I present it that way – general categories of what I’ve learned accompanied by personal anecdotes of how I’ve learned it and how the idea might be used – it would be something people would buy?
The natural audience is other creative people, especially those with challenges like mine. Or who might develop challenges like mine during their lifetime (including age, which wreaks havoc on memory and speed as well as physical bodies). I don’t have the normal procrastination problems people whine about – I’d like to think that’s an advantage I’ve gained from the work being so hard to do at all.
Weigh in and let me know what you think, because you’re asking if I want to climb Everest.
Hi Alicia – thank you for the warm welcome. 🙂 I’m delighted to meet you.
Regarding this: Do you think if I present it that way – general categories of what I’ve learned accompanied by personal anecdotes of how I’ve learned it and how the idea might be used – it would be something people would buy?
Yes, I think people would buy it. With the prevalence of chronic illnesses, people are searching for answers and ways to cope, especially in a world that moves so fast and is constantly asking more and more of people. I know I’m constantly trying to figure out how to balance everything, plus work on my writing.
However, perhaps if you did decide to pursue this, perhaps it would be easier if you did it in collaboration with other creatives with chronic illnesses? Perhaps it could be a collection of essays and you would be the editor? Just a thought, but I do think it would lessen your burden.
I just re-read my reply: I used ‘perhaps’ three times in the last paragraph. Ha! Chalk it up to the RA flare I’m dealing with today, I suppose. 🙂
You never have to apologize for spontaneous writing unless you are also deliberately seeking battle, which I don’t think is you at all.
We don’t hold it to the same standards, or I’d never dare put out a blog post! I try, but fail enough to know it’s more effort than I can expend sometimes. I do try to keep out the worst errors of grammar and punctuation and spelling, but even that can go on a bad day.
Perhaps it isn’t that bad?
Thanks for the considered reply.
I don’t work with others – I’m too unpredictable to be counted on – but I urge you to consider writing such a book if it appeals to you.
My sister does that – writes academic tomes with collaborators – and is the editor, but I’ve heard way too much about what can and does go wrong (and right) to attempt something above my skill level! I think the burden on the editor – responsibility without control – is substantial (from hearing her – and she’s a high-powered academic who can literally end someone’s career).
Which is why, if I write it at all, it would be a strictly personal version. All the control in my little fingers. Not power-hungry – just a realist.
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It wasn’t your fault, it was your condition’s fault. You are not CFS. HUGS! You bested it!
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Hugs always welcome!
But no, I didn’t best it. I succumbed. Maybe it will help to eventually win.
As long as you and your precious cargo got home safely, I’M counting that a win. 🙂
Matter of definition then.
I only count wins when I don’t lose the next two days to staring at the wall. And husband said he could have woken himself up to go. And she could have taken a taxi (they’re waiting outside the station – though I worry about taxis late at night, and for single women – as we all do).
I only have so many days left on Earth in which I might write. I’d like to finish all three books of Pride’s Children. Daughter asked me to write a summary of the plot in case I don’t make it, but I’d rather leave it finished by my hand!
I want that, too, Alicia! Your husband and daughter will just have to help you conserve yourself, especially in the evenings. ~gentle hugs~
I know that feeling of things escalating until all you can do is ride it out to the end. So glad you got through it.
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Whew! Glad you and yours got through it uninjured. Sounds like it’s time for that reset button.
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Pushed it yesterday – still struggling in the aftermath this morning.
And this week is set to be another perfect horror. Followed by a wonderful respite, but packing is NOT an easy activity, and leaving behind a pet isn’t either.
In a moment I’m having First Shake and First Nap, followed by Second Coke – and hopes that the events of the afternoon, which are supposed to go off entirely without my participation, actually do.
Even happy things are stressful – and the husband who comes in to tell me we need to worry about a POSSIBLE hurricane in the Caribbean, because he discovered it online, is the exact kind of thing which doesn’t help! First, interruption; second, worry I can do nothing about. I told him it’s HIS worry. I hope he can make the hurricane not form.
And then I’ll shop him out to do this for other people. Just think of the possibilities!
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It’s certainly not for me to tell you have to manage your energy since you’re already the best expert you’ve got on the case. Let me just give you a friendly reminder to actually do what you know you need to to take care of yourself. That being said, we all do things we know we shouldn’t sometimes, so don’t beat yourself up too much. You’re only human.
That’s cool that you’re working on an NF book about your experiences. Will it be a self-help type for CFS sufferers or more of a memoir? Or some combination of both?
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The problem is two-fold: identifying the problem at a useful time, and being able to intervene. The latter requires a decision-making capability I often lack: it takes energy to make decisions.
As far as the book, Paper Brain, it’s a side project I started so all this stuff doesn’t clog my meat brain, swirling around begging for attention. Out of the head and into a Scrivener project, it’s been acknowledged, saved at the right time in boring detail, and I can now ignore it.
Maybe some day – IF I really think it has enough value to other people living with chronic diseases to be worth MY energy.
I already have a box of notes on Surviving Back Surgery – how to manage the long process of getting better afterward – which I’ll probably never turn into the book I planned. I wrote everything down as I went through it – so it’s not lost (and I hadn’t enough brain at the time to do anything else than focus on survival). But turning that undigitized mountain of detailed notes into a book may have the same problem: lots of work – for a limited utility to the world?
It must be so hard, making all of these accommodations, when you can remember not having to. And yes, it resonates for me. If I am anxious (enough) then I have an OCD routine that takes over and adds at least ten minutes to how long it takes me to leave home. And if I’m really, really anxious, I can’t leave the bathroom.
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Sorry you have to deal with anxiety. I get some occasionally, and it’s no fun – and mine is minor. It’s a crippling sensation.
We all have ‘stuff’ to deal with. I just find mine amusing to poke at – and of course would rather find solutions.
I use a LOT of yoga-type breathing. Breathe in, hold, breathe out – as long as posssible, 8 heartbeats, as slow as possible. EVENTUALLY it works.
I took a whole bunch of other notes on possible reasons and solutions; I’ll report on whatever works.
All I’m trying to do is find some time every day, with my brain ON, to write.
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CONSTANT blindsiding lately.
What with the time I’m spending downsizing, getting the daughter launched (she’s not completely ready, but she needs to go anyway), me not having the energy to do the things I did just last year, and problems with the house, the yard, and the cars…
We need out of here, and we now have a hope of achieving houselessness – unless daughter can’t fly yet. Or Troy, farther north, makes her problem with cold and dark even worse (yes, she’s taking a light therapy box), and she needs to come home for a while.
You know it’s always something.
Problem is, the higher the stress level goes, the lower my coping skills go – because I have to spend more time worrying or scheming or planning.
Plus that getting older thing that keeps creeping up on you…
It’s a wonder anyone chronically ill ever gets anything done, I tell you.
It’s a very good thing I’m an optimist, or make myself be: I just plunge right back in and try again.
Because not doing so is worse.
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I have some pretty bad nights every so often, but not quite that bad. Though I have been up at 3:00 am a couple of times lately rather than toss around anymore. If I were more methodical, I could probably narrow down the specific causes, even though I know them in a general way. Luckily I have no (very few) demands on my time and mind, so I haven’t had to think about it too hard. Weekends are putting a bit more pressure on me since my son volunteered me to proofread the weekly newspaper he and dear DIL publish. At what point did I (accidently) give him the idea I was good at proofreading?
The real problem is that even when we know exactly what we need to do or not do, there’s a psychological quirk that will come out of nowhere and blindside us.
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I’ve been having way too many of these very late nights. It’s always something that got me wound up TOO LATE at night.
This one I captured because 1) I remembered the details when I got up, and 2) it was particularly bad, and 3) I can see exactly how it happened and it was my fault.