Chronic Fatigue Syndrome

The last four days I’ve been…IMPROVING?!? Best birthday present ever!

I’m experiencing something I can’t explain, but it’s magical and marvelous and I’m grateful for it every hour that it sticks around. It started on Thursday the 28th, four days ago. Greg and Beth and I went to Costco for a household run. I really figured it would take all the energy I had that day, but when we arrived, I was surprised that I didn’t feel the need to use one of their offered electric scooters. I wasn’t trying to be stoic. I checked in with my body, and it felt pretty clear that I had enough energy to walk around for an hour or so, which would hopefully be as long as it took. I decided to just walk, see how it felt, and then go grab a scooter if I needed one. As it turns out, I didn’t need one. I was a little surprised but thought eh, sometimes the universe gives me a good energy day. I just got lucky.

Friday, I had very little to do except save up my energy for our friends arriving that night. And yet for some reason, I was just itching to hang up my yoga trapeze. It sounds more acrobatic than it is; the only thing I bought it for was to be able to gently hang upside down, which is great for the spine. I bought this a few months ago because most of my pain is in my lower back and spine, and I figured it might help. For some reason I just got the fire in my belly to hang it up on Friday, and I would not be stopped. I went to our little local hardware store, bought bolts, came home, and spent an hour drilling holes and using my Grandpa’s old ratchet set to bolt this swing to a large archway outside our bedroom. I would get a bolt partway in, get exhausted, and have to go lay on our bed for a few minutes. Then I’d get up and go back to it. I kept telling myself this was stupid, I was just draining myself of everything I had. Yet, for some reason, when I rested, I actually felt a little better. So I’d keep going. Finally, the swing was up. My daughter and I tested it, it seems really fun! I’ll update the back-pain-vs-yoga-trapeze topic later, after I’ve had a chance to see if it helps at all.

Later that night, our friends Lisa and Todd and their daughter arrived, and I was actually awake and functioning okay. But I figured the next day would be hard, I’d probably be crashing. I felt good Friday night, but it seemed inevitable that I’d be on the couch the next day.

Saturday we all woke up, and I…..made everyone sourdough pancakes.

Then……THIS HAPPENED:

Best birthday weekend ever!! #birthday #sailing #flicka20 #pugetsound #spoonielife

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I honestly don’t know how to explain it. I was standing in the kitchen for a good hour making food. That alone is usually completely impossible. But then I still had some energy when that was done, and I knew I should be smart about this, and Greg and I talked about saving up all my energy for friends coming over that night to celebrate my birthday, but I just felt like SOMETHING WAS HAPPENING, and I wanted to take advantage of it. So I said, “Hell, let’s just burn up every spoon I have. LET’S GO SAILING.” So we did! Holy CRAP! WE WENT SAILING!!!

Okay, well, we sort of went motoring, since there was no wind. We put up the main and jib, but eventually took the jib down and just putted around the Sound with the main up, trying to catch gusts.

And here I have to stop just for a second…

…and thank two new friends and wonderful people: Al and Kristi! I’m writing today about the miracle of being out on the boat, but the hidden miracle holding that trip up is that the boat RUNS. My Honda outboard, as you may remember, was out of commission for weeks. I have a large, heavy outboard engine, and it needed to come off the boat to go to the mechanic. Problem was, I didn’t know how to remove it. It’s not as simple as “lift the engine off the boat, carry it to the car,” as some folks thought. There are wires, fuel lines, battery cables, transmission cables, lots of stuff going to the engine from the boat. Greg and I spent two afternoons down at the dock trying to figure it out, and we eventually agreed that we just didn’t know enough. If we started pulling random stuff off, we could really damage things.

Well, after a lot of calling around and getting nowhere, I was really at the end of my rope. I posted about this to a local sailing list, and that’s when Al stepped in to save the day. He and Kristi live aboard their boat, and they actually motored over to our marina, got a slip for the night, just to spend the day helping me out. And he did it! I don’t know why I was so shocked, Al knows what he’s doing, but still it just blew my mind when he managed to get all the wires out and pull the engine off. Kristi and I talked and talked, and we all just hit it off. I had so much fun with them. They came with me to drive the Honda to the mechanic, and then we went to lunch. We had such a nice time! Two months later, I’d gotten the engine back on, but it wasn’t hooked up yet. We’d made iPad videos of Al removing things so that I could put it all back together myself, but I was sick, and exhausted, and stuff just kept coming up, and frankly I was nervous to do it. So, they came over a second time, and helped me out. We had another nice afternoon at the dock, and then went to dinner. I am so, so, so grateful to them! Thanks, you guys! HUGS!

Back to Saturday’s adventure……

I was at the helm nearly the entire time. A good 2+ hours we spent out there, and I held the tiller the whole time except for a few minutes Greg took over. We saw two dolphins, one seal, a few logs, and a lot of other sailboats using their engine. It was a gorgeous day, sunny but not too hot, and the whole time I kept checking in with myself to see if I was really doing this. Am I really okay? Is this actually happening? I was surreptitiously trying to check my hands to see if they were shaking – a sign of rapid crashing coming on. They never shoke. I never felt like I was going to crash.

I steered us to the dock, we tied her up, and I thought, “Okay, now it will happen.” I was really, really tired. There was no doubting that. But it felt like a normal sort of tired. Like I was a fatigued person who did something tiring. This is different than my usual state, where I feel like someone with some kind of broken internal engine just did something that broke it further.

My doctor at Stanford told me that CFS is a mitochondrial problem. “The mitochondria don’t work correctly,” he said. “It’s why you feel so weak all the time.” I think back to biology class, I remember drawing a picture of a cell and naming the organelles. I remember the mitochondria because they were my favorite thing to draw. “The little powerhouses,” I was told. Where our energy comes from, where ATP is synthesized. And even though you can’t see a cell with the naked eye, sometimes I’m sure I can feel every cell I have. It’s like I can feel every mitochondrion, giving up, a hundred times a day. I can tell when they try to rally. I can tell when they have miraculously figured things out for an hour or two (that’s when I get laundry done), and I can tell when they all slow to a crawl and send out a distress signal (that’s when I lay down for a couple hours).

But yesterday, it felt like the mitochondria were weary, but not broken. I can’t explain this feeling better than that. I know it sounds vague and odd, but it’s very real. My sense of it was borne out when we got home, and then I felt a little crash-y. I thought, “Oooookay, here we go….”, but once I started eating a little food…..holy crap…..I felt better. I don’t know how emphatically I can express that this is not how things usually go. Usually, food is nice and my body obviously appreciates it, but food won’t fix a crash or help the pain. It doesn’t make that internal engine be not-broken. It will give me just enough energy to curl up in a ball and lay there for a few hours, while my body slooooooowly, sloooooowly, slooooooowly tries to replenish one or two spoons. If I’m very lucky, I can get a couple back, but I have to be careful not to move too much. Greg and I have an entire routine for this. We get my pillow, my water bottle, my turtle quilt, my iPad, my purse. I lay on the couch, he tucks me in. My corgi waits for this whole process to be done and then he leaps onto the couch and curls up behind my legs. And then no one bothers me while I read a book or listen to a meditation for a couple hours, willing myself to get well, quietly pushing the anxiety away.

And that’s just how things go normally; it’s much worse when I’m very sick. And lately, I’ve been very sick.

Today we all got up, had some food, and then I suggested (I know, I know, why am I the person always suggesting things? Shouldn’t I be resting? Screw rest, I’m going to take advantage of this….) that we all go to the Farmer’s Market a mile away. So we piled in the car, drove down there, and walked around for….two hours or so. I still don’t…I can’t even…what the hell? HOW WAS THIS POSSIBLE? By the time we got back to the car, I was in so much pain trying to sit down that Todd actually got back out of the car to help me close my door, because it hurt too much to lean out and grab the handle. So yeah, I was hurting, a lot. But what I’m trying to say is there is a difference between being really tired and in pain, and being broken. With the first you can bounce back under the right circumstances. With the second, you can’t bounce back, you can just slowly inch your way back to your broken baseline.

These last few days, it feels like I’m very weak and not in shape, and I’m getting over-tired, and I still have this pain problem…..BUT, that by some big of magic, my little internal engines aren’t broken. I hesitate to write, “not broken anymore” because I don’t know if that’s true. All I know is, they don’t seem broken the last few days. They feel like they’re working again. It feels this way because when I rest and eat, I actually feel better. This is stunning, this is so unexpected, this is so different than the awful deterioration of the last ten years.

So what….the heck….is happening?

Here are the things I’m doing now that are new:

  1. Since I saw my naturopath at Bastyr two weeks ago, I’ve been taking an herbal supplement she gave me, called Andrographis Plus.
  2. I’m drinking lemon balm infusion every single day (on her recommendation), that I make myself. This is usually about 30-40 ounces a day.
  3. In that infusion, I’m also adding 4-5 dropper-fulls a day of Holy Basil tincture. This wasn’t my naturopath’s idea, I read about Holy Basil in a book about adaptogens, and decided to try it.

That’s it.

Oh, well, at Costco we got these little mini frozen tacos that I heat up in the air fryer. I’m addicted to those. I joked today that “maybe it’s the little mini tacos!”.  Anything is possible, I guess.

I have a lot of questions, and zero answers.

  • Is this really happening? After four days, I think I can say with confidence, “Yes, it’s happening.”
  • Will it last? Who knows.
  • Is it because of the herbs? Occam’s razor suggests yes, but I can’t be sure.
  • Will it get even better than this? If, every day, I can recover just a spoon or two more than I did the day before, does that eventually mean that I will recover all my spoons? Could I eventually be….cured? Who knows.
  • Is this just a wonderful “up” phase of my illness? Yeah, that’s very possible. People with fibro and chronic fatigue syndrome have “remissions” for periods of time. It happens. They often get sick again. I’ve never had a remission, I’ve had a very steady decline over the last decade. So, for me, this feels miraculous, and I want, I WANT SO BAD to believe that it won’t ever slide back again, that I’ll just keep climbing out. I can’t know whether that’s true, though. I just can’t know.

I don’t know what’s happening, but I’m so grateful for it. Today has been amazing. That trip to the Farmer’s Market should have knocked me out all day. But I came home, I rested for an hour or so, I ate food, and I felt better. Shut the front door! I have done laundry today, I actually cleaned a few things up, I loaded the dishwasher, I did some yoga. I mean, crap, it was almost a normal day. Almost. My energy isn’t normal, but if normal is 100%, I’m at about 50% right now. A normal daily energy level for me is around 20%-30%, sometimes less if I’m traveling or have lost sleep.

It was the best birthday present I could have possibly had. Thanks, universe. Please let me keep it, please, please, please.

7 replies »

  1. OMG just enjoy!! So awesome! I suffer from Lyme, CFS, and FMS. And this past month has been a pure reprieve (not 100% but i csn do stuff!) from the horridness. I’m just trying to savor each moment. Happy birthday! I hope the goodness continues!! 💚

    Liked by 1 person

    • Thank you so much! It’s been funny, I’ve actually had this weird new anxiety where I’m like, “Oh my god! I can’t waste this PRECIOUS ENERGY! What should I spend it on?” Like some kid who has never ever seen spending money and is suddenly set loose in a toy store with $100.

      Liked by 1 person

  2. Excellent news. I know it’s really hard, but don’t go crazy now that you’ve got a little energy. . . . give those poor weary mitochondria time to build up their strength. ❤

    Like

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