This isn’t a whine: I’m putting this up for two reasons: first, to clarify it for myself while it is still fresh; and second, in the hopes it may help someone else. We people with brain fog (among other fun things) live on the top of a mountain ridge on an unstable mass of snow, and even a small thing can start the snow moving.
And when you’re in an avalanche, what you know can save your life.
I had one of the bad nights last night – couldn’t get myself to go to bed until 3am: couldn’t get rid of the twitchies (Restless Leg Syndrome), even with a double dose of what usually works: yoga stretches; couldn’t get warm; kept having to get up; and was fighting hunger.
And then it wasn’t until 6:30am that I even managed to get to sleep for a while, and then only slept until the alarm rang at 9:45 so I could get up and make sure the college kid was up in time to prepare for a final today.
This isn’t a whine because I’m doing the only thing that makes sense (assuming I have the time and the ability) after such a night: 1) figuring out why, and 2) seeing if I can learn anything to prevent it from happening next time, and 3) hitting the RESET button to get back to ‘better.’
1) The why:
Because people with CFS (PWCs) can’t take an excess of anything, including happiness. We push the limits, we pay the consequences plus interest – never a reprieve. It is good to know that about yourself: so much can I do, and anything over that will have immediate and long-lasting consequences, so ACCEPT that and DEAL with it.
‘Well’ people (I’m going to start calling them that, instead of ‘normal’) can often get away with things.
I remember a statement from a book (though not which book it was) to the tune of ‘have you noticed that if you stay up late one night, say your bowling night, you are not unduly tired the next day?’ It was a recommendation for taking advantage of that feature of yourself: if the reason is doing something fun, or that you want to do, you could live with a little bit less sleep, and not miss it. It went along with noting the curious fact that some Orthodox Jews could smoke heavily all week – and abstain completely on the Sabbath.
PWCs can’t – and it’s no use wanting to, or pretending we’re normal. Or ‘well’. Either tiredness OR having a good day can lead me astray.
Yesterday was an excess of happiness – some I had planned, some was an obligation, and some I misjudged. Badly. I took a nap before I went to my support group meeting – we are a small group, have just lost a long-time member, and I had stuff about him to share. I felt strongly I SHOULD go – and I was happy I did.
But it strained the system, since instead of taking a long rest afterward – or not going out again that day (my usual), I was also singing at church. I wanted to. I was the cantor (kind of obvious if you don’t show up). And I had a small solo with one of my favorite songs, in Spanish (Pescador de Hombres). And I LIKE going, and I LIKE singing. It cheers me up considerably to be able to contribute to SOMETHING in life.
I thought it out ahead of time: I left the support group earlier than usual. I drove to Princeton, and arrive 15 minutes early, and, instead of going in and practicing extra, I took a short rest in the car. Good planning, slight execution problems: not lying flat, and far less than my usual half-hour – but a whole heck of a lot better than nothing. I was prepared – eye mask and earplugs. When middle son caught me on the cell phone – to wish me a Happy Mother’s Day, I put him off until evening, and took the rest instead. So far, so good.
The singing went flawlessly (as much as it ever does – we always get something unexpected lobbed at us, and we always seem to manage without too much fuss the congregation can see). It WAS the pleasure I had anticipated. So far, again so good.
I even brought a quick protein shake to drink so I could drive home safely (can’t eat too soon before – messes up the vocal cords, but am always wiped after – something to eat makes me functional long enough to make it home safely).
I even headed straight to bed when I got home – something I often struggle with because I don’t like NEEDING naps.
I was proud of myself for taking the nap first, even though AIM on my computer showed me that for the first time in months, all three children were online – and all I would have had to do would be to type ‘hi.’ I sent them a quick note, ‘Later,’ and got off the computer. Again, good choice.
A super-quick nutritious dinner, a quick phone call from DH to his mom and dad, and I was looking forward to talking to the kids.
But then I started making mistakes I can see now. (To be continued.)