My writing rules have not changed

A white notebook with some sprigs of flowers with leaves. Text: From 2013 to 2019 the Rules I write by have NOT improved. RATS! Alicia Butcher Ehrhardt

CHRONIC HAS NOT BECOME BETTER

These are the ‘rules’ I figured out way back when I started blogging.

I have moved cross-country, published the first volume of Pride’s Children, lived, exercised, eaten – trying multiple possibilities to no useful improvement.

It’s daunting.

Pain has increased a bit, and I walk less well. I’m avoiding any more surgery on my back unless 1) forced to (by a few things which can get dramatically worse), or 2) I’ve both finished all three PC volumes AND found a surgeon I believe can actually do anything useful.

Why? Because we CFS folk are sensitive to anesthesia, subject to wild pain fluctuations with surgery, and take forever to heal.

So I went back to look at the Rules, and am listing them, unaltered, so you don’t have to go look at the Archives for 2013. I may correct an odd typo or two.

Pray for me.

Contribute a few bucks to research on Dr. David Tuller’s fundraiser (he’s our wonderful journalist with a PhD in Public Health from Berkeley, where he works and which backs him up against some of the worst slanders about his abilities and motives. Why him? Because he’s been doing this for us for two years, and knows everyone and everything because he’s already up to speed. Because his research and letters, published on the Virology Blog, have been amazing. Because the other side, the fake scientists who insist I have a psychological disease, greatly fear him (they were getting away with murder until statisticians called them on it).

Rules from April 2013 – still valid:

*** DO NOT READ THESE RULES IF YOU ARE EASILY OVERWHELMED *** I AM NOT RESPONSIBLE FOR YOUR CONSEQUENCES *** YOU HAVE BEEN WARNED *** YOUR MILEAGE WILL VARY *** DO NOT ARGUE WITH ME *** YOU DON’T HAVE TO READ THEM ***

Like physical laws, like gravity, especially, these laws are immutable.

Finding my laws – and exploiting them for MY benefit, is how I survive. Which I do, erratically.

Anything else is not only really stupid, but, like gravity, results in large crashes when I fall.

I have figured out these rules in detail only the last year or two, because I couldn’t afford to know them – and their immutability – before then.

I have the scientist’s orderly mind, and the drive to understand things that accompanies it. I would have made a decent scientist. Oh, wait – I did – for thirteen years.

I want to write. I am very grumpy when I can’t write.

1.    If I am playing video games, trolling the internet, or reading far into the night, it is not for pleasure. It is because my non-functioning mind can’t make decisions. This actually has a name: Decision Fatigue. It is part of the dreaded ‘brain fog.’

2.    The only way I can make good decisions is to be rested enough. Yes, I can tell. But only, Catch-22-like, if I ASK myself – and I’m often too non-functional at the time to remember that.

3.    The only way to reset the decision-making process, for me, for now, is to lie down.

4.    The best recovery sleep is one taken just as I’m getting tired – OR COLD. It is at least 35 minutes long (the extra five is to settle down). It takes three positions: 1/3 lying on my back, 1/3 on each side. It must be: as dark as I can manage the room; horizontal; warm enough (lowering body temperature is an indicator); completely dark (use eye mask if necessary); completely silent (use ear plugs, and if the neighbor is using his industrial leaf-blower – way too often – I must add to the earplugs industrial ear protection: the earplugs alone are not enough). There can, obviously, be nothing else going on, no TV, audiobook, music. Certainly I can’t talk to you on the phone and count it as a Rest.

5.    During the nap I actively try to do all my rest-and-meditation tricks (true meditation is beyond me, but I sometimes do a little praying as I settle down, especially if anxiety is a problem (it often is)): I do three yoga ‘surrender breaths’ at least in each position, more if necessary, in sets of three. Each of these breaths has me filling my lungs to the utmost, holding a moment, and then ‘letting the breath fall out’ by opening my mouth and just releasing all tension. I – not necessarily yoga practitioners – then use all my muscles to push every bit of bad air from my body. I think this compensates for somewhat shallow breathing the rest of the time – junk in the air in the lower alveoli? – but what do I know?

6.    If I am tense or twitchy, I use those first five minutes to do all kinds of stretches – some I’ve invented myself – all lying down (unless I have a touch of sciatica – I’ll discuss that separately).

7.    It doesn’t matter if I had a nap 40 minutes ago (this part I hate). If I need another one, I need another one. Typical days without too much stress get by on two, are better with three. If I am recovering from a bad night, it can take four or five. If recovering from overdoing it (described below), pushing my limits, hitting the wall, losing it – whatever – this process WILL go on for days – regularly as many days as I overdid it; if I am VERY observant, I may be partially functional sooner – but can easily lose it again if I assume I’m back to ‘normal’ too soon.

8.    My ‘normal’ is not what ‘regular people’ call normal. You’ll see. My normal means I can get through a day with only two or three required half-hour rests – and actually get something done. (Getting something done will be described later.)

9.    I cannot work through or power through my little ‘problem.’ It would be like driving a car without gasoline, or better still, without a required oil change that is long overdue.

10.    I can choose to try to bend, break, or stretch these rules. Another one of my little ‘bad decisions.’

11. I cannot evade the consequences of having done so.

12. I am consciously trying to find the implementation that allows me to make the best choices, aware that life is imperfect, and the best choices are often not available to me.

13. Stress – of any kind – loses functionality. The loss is directly proportional to the stress, but exponential, not linear.

14. My personal limit seems to be to leave the house no more than three times a week for a fully functional existence. It is very limiting, and it is a difficult limit to enforce. I often have to make an exception to not miss my yoga class; I always pay for the exception.

15. If I leave the house, on one of those trips I may stop and do a short shopping stop: more than 15 minutes, and/or without the walker, and we are done – I must leave.

16. I can’t eat sugar or refined carbohydrates very often; if I do so, it will take four days – no exceptions – to get them out of my system. Every couple of days I may choose to do the Drs. Heller’s method of eating ONE balanced meal a day with some carbs and staying within a strict limit of ONE hour from start to finish. If I do this only a couple of times/week, exactly as they describe, I minimize its effects. Minimize, not evade – but c’mon guys, sometimes you gotta have birthday cake.

17. If necessary, I carry Atkins bars, and can have up to a couple a day. These are for true emergencies – and are sometimes what keeps me from going off the deep end, the illusion of a candybar, some chocolate and peanut. They are good for a meal-on-the-run, but if I’m on one of those, we are already compromised, and I know it. Sometimes they are the only thing that gets me home safely when I have to drive. I WILL pay for it.

18. The BEST solution to leaving the house is to get into bed the minute I get back. I’m very bad at it, because by that point I’m living on fumes, and I make very bad decisions on fumes.

19. No matter how many times I beat myself up about it, no matter how many times I fail to do the right things, I don’t seem to be able to do this perfectly.

20. I’ve been collecting some of the above data for the entire 23 years I’ve been sick. Some of it ‘clicked’ but recently – I have a bit more time to observe myself right now.

21. If I can’t get to sleep at night, I can take 1/4 of a 3mg. Melatonin tablet (which, taken as I’m getting sleepy, works best). I can also take 1/4-1/3 of a muscle relaxant (Skelaxin), which helps when all my yoga stretching doesn’t quite get the twitches of RLS (Restless Leg Syndrome) out. I WILL PAY for these the next morning with between 1/4 and 1/2 day of additional grogginess. Most of the time these methods will get me to sleep – but the cost in functionality the next day is significant. Less doesn’t work. Taken too late (I told you I’m making these decisions from the very bottom of the decision quality scale), they don’t work.

22. It takes me 2-3 days to get back on a normal schedule if I stay up too late, longer, proportionately, if I do it for more than one day in a row. Most of the time I make an actual bad choice (I COULD set an alarm, or block the internet, or turn the computer off, or put the book or the ereader game down); sometimes something occurs late at night, usually by phone, occasionally because I HAVE to finish something. The REAL RULE is: go to bed. At the same time. As I get sleepy. Like a two-year-old.

23. When I get into the lowest energy state (zombie-like but still technically awake), and caught by something that gives my mind the appearance of intelligent occupation (pick your computer game of choice, or web-surf desperately for content), I’m amazed I can even make the decision to go to bed – after hours (literally) of being stuck in la-la land. I ALWAYS beat myself up when I do this. It never seems to help.

24. I get into the lowest energy state, because, goddammit, I’m a grownup, grownups don’t take naps like two-year-olds, and I hate taking naps (you see the lack of functional decision-making here, right?), and I’ve allowed myself (sometimes by design) to get to that state by going along as if I WERE normal, and not planning when the next nap needs to be, and how many I need to take to get through the day.

25. Here’s the new rule I just figured out: WRITING helps. And having it in an easily-accessible SCRIVENER file, where I can get to it before I do the next thing, helps even more. I’ve known these rules for year, have most of them written in the more than twenty notebooks that have journal pieces, my journey as I go through life, my writing notes as I work through revisions… BUT it hasn’t been until I’ve started using Scrivener – because of its ability to have so many files for a project and not take forever to open – that I’ve started adding a section to each project where I keep track of this stuff. Now, every time I realize I’m writing the same things, and nothing is new, I’m starting to use that as an indication that I’m ready to work.

26. Writing seems to help focus my mind – that’s why I do it. But I’ve written the same words many times before – in various chunks. Slowly. By hand – which is often a good things to do (I write most of my new text longhand, and revise on clean printouts much better than on a computer screen) is TOO SLOW to capture the torrent of thoughts which flow through my head.

27. Writing LISTS seems to help focus, as well. Brain says, “We’re doing a list,” and puts stuff out in some kind of order.

28. Getting things out of my head, and onto paper where I can see them, counteracts the ability to hold only one thing in my mind at a time (see post about likening my brain to an old-fashioned computer with a single processor: I DO NOT MULTITASK well.

29. Too many things in the queue leads to total paralysis – I can’t do what needs doing for one task before another forcibly takes over the single neuron I use for thinking (the other is used for breathing, thank-you-very-much, and should not be co-opted frequently: that least to hypoxia? anoxia? death? And it usually forgets to switch back). Putting the queue on paper is the trick – I’d discovered that when capturing the To Do list manually – but only the computer list allows for editing the list easily, putting things into the right order as I edit, and modifying lists items as I go. By hand that requires re-writing the list – and gets to be all-encompassing of the time, so much that list-making becomes the sole activity.

30. I dumped this out, non-stop, in a half-hour. Feels good. Now I have to eat something – and go finish taxes. I can work for maybe another hour before Second Nap. First nap was almost two hours because I went to sleep at 5am. I am coasting, feeling almost human, but it won’t last – another one of the rules: feeling good, functional, almost normal, DOES NOT LAST.

Changes since 2013:

Very few.

I don’t do organized yoga since I’m no longer vertically stable enough to stand, and half the yoga I was doing was done standing.

I am no longer in charge of taxes – I did them until hubby retired; then he took them over. Probably a good idea.

And it’s now TWENTY-NINE PLUS years.

I’m still trying. Daily.

Book 2 – NETHERWORLD – is coming along. Very slowly.


There’s an incorrect word up there somewhere, but I’m too tired to find it again. Lemme know if you do, and I’ll fix it.

 

Advertisements

12 thoughts on “My writing rules have not changed

    1. Alicia Butcher Ehrhardt Post author

      I still take the B1 every day, but I’ve also added NOW brand liquid Ultra B-12 – up to eight (but usually no more than 3-4) droppersful a day, and a 500 mg Micro Quick Absorb Vitamin C tablet.

      I am no better, but these things make a difference in being able to focus for a while.

      In particular, the B-12 will extend my ability to stay awake for an extra hour or two (though I pay for it in loss of functionality later), which is very helpful in many situations.

      On top of that, a good multivitamin every day ensures that I get the trace minerals. Mine is Centrum Silver for old ladies, 1000 IU of D3, plus 750 mg of extra calcium and 500 mg of extra magnesium.

      I don’t know if that helps, or if I’m fooling myself, but I’ve been doing it for many years.

      Like

      Reply
  1. joey

    25-29 are all me as well!
    It’s interesting how quirky we all are, even the “normal people” are quirky. It tends to take some living to know how we like to do the living, and it’s so hard to balance a life. Any life.

    Liked by 1 person

    Reply
  2. Janna G. Noelle

    It’s not the existence of the rules that is so shocking but more so the intensity of them. Yet it’s good that you’ve come to know your body well enough to understand what’s needed for optimal performance. Every person could stand to make a study of themselves in this way rather than mindlessly blundering through the same destructive practices and then wondering why they constantly feel like crap. When one’s body speaks, they should listen.

    Like

    Reply
    1. Alicia Butcher Ehrhardt Post author

      And yet I have had a week in which nothing worked, and I was racked with pain, and my ankles and feet were swollen like those blue latex gloves medical people sometimes blow up to give kids as balloons!

      Something changed, big time, and I haven’t finished figuring it out, so I’ve gone back to very basic things: MORE rest, more time spent in back extension, extra painkillers for a limited time, more time in the pool, more stretching, more isometrics.

      I wish we had readouts.

      Are you familiar with chaos theory, and unstable equilibria? I’m so marginal that losing a little bit has vast consequences, and brings my writing to its knees.

      I’ve had a horrid week, and then today was able to edit yesterday’s 104 words, and add a bunch so the week isn’t a total loss. I was petrified.

      Going for another nap RIGHT NOW.

      Like

      Reply
  3. Lynda Dietz

    This is an incredible bit of insight as to what you deal with each day. I know my eyes were opened greatly to the realities of CFS when I read Pride’s Children, and I realized you were writing from your own experiences. You are one of the most disciplined people I’ve come to know, and I’m glad you’ve found what works for you and what doesn’t. As rigid as they seem to be, the rules probably doesn’t seem nearly as confining as the consequences of not following them strictly.

    And I will be praying for you!

    Like

    Reply
    1. Alicia Butcher Ehrhardt Post author

      Thanks, Lynda. Prayers are what sustain me.

      Self-pity is neither attractive nor helpful, so I indulge it as little as possible – I have work to do! I think of Flannery O’Connor, and how she died at 39 of the complications of lupus, and I realize I have been blessed in so many ways. I CAN do what I want to do; so many of us can’t. If it’s slow and awkward, so be it.

      The consoling thing about wanting what I want is that I HAVE done it. When I started this project, I didn’t have that. I’d written a trunk novel-and-a-half, and some short stories, but there was serious work ahead of me.

      I could see the vast difference between what was the story in my mind, and the results of putting it on the page, and slowly started chipping away at the differences. My teachers had to be books, but that has worked out okay.

      Thanks again for reading and reviewing. It helps. A lot.

      Liked by 1 person

      Reply
    1. Alicia Butcher Ehrhardt Post author

      I actually did. Mindlessly doing something that doesn’t even try to stimulate my mind isn’t my thing. I play games, read articles on the NYTimes, do sudokus and nonograms to try to kick my brain into gear.

      When none of that works, I give up after a pre-set time period. Today I went to the outdoor pool and floated around, stretching. I haven’t gotten anything done, but at least I enjoyed the warm water.

      Many days, once I block the internet, I can get focused. Sometimes that doesn’t work – when the timer beeps and after trying a nap, B-12, eating (if I’m hungry), or reading a writing book – and I realize the day isn’t going to get better. I try again the next day. Every time I possibly can.

      I figure my muse needs to know I’m showing up.

      Liked by 1 person

      Reply
      1. yelnifreklaw

        I’m a bit of a gamer myownself and I avoid the NYT every chance I get. I guess we are looking for different things. I am not particularly interested in “stimulating” my mind. I live alone and quietly pursue several interests. I’m not goal or result focussed choosing to pay more attention to the moment.

        Like

        Reply
        1. Alicia Butcher Ehrhardt Post author

          I need to finish my writing of this trilogy. I’m hoping it’s one of the big books of my generation of indies. The NYT is an act of desperation – it means all my other time-wasters have failed. Hehe.

          The moment always hurts. I choose to bury myself in the writing – if I can. It’s a different world, one where I can write the rules. I stay true to life as I see it, and there will be no tacked-on end to Pride’s Children where something makes it all better, but it is still a hopeful, optimistic story, and I know where it ends – and want to get there. But the way is through fire.

          Like

Comments welcome and valued. Thanks!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.