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.
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:
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.