Chronic Fatigue Syndrome

A week after noticeable improvements: still doing well

It’s been a week since I began noticing that my body seems to have to regained a bit more energy, and developed the amazing ability to recover a little energy when given rest and food. It’s been a really nice week, I’m so grateful for it! Things remain about the same.

I’ve gotten better at describing what’s happening, and here’s what I’ve been telling my friends and family:

Imagine that my pre-sick me had normal energy, and we gave that energy a number. Let’s call it a 10. Every day I woke up with level 10 energy. If I was really in shape, exercising a lot and getting good nutrition and feeling great, maybe I got 11 or 12 or even 13 (I imagine an Olympic athlete wakes up every day at about a 19 or so), and if I was sick, I might dip down to 8 or even 7. But in general, I was at level 10.

My sick-self, the one that I’ve been living with for the last decade, has been steadily declining. I spent a lot of years at 7 and 8. Those were good years. I could pass for “normal” most of the time. I miss those years, a lot.

In the last couple years I declined to a 5, and more recently, a 4. When I went on the antivirals prescribed for me by the doctor at Stanford, I had the worst fatigue I’ve ever known, and began living most days at level 3. I began to have a couple days a week where I was at level 2. I consider level 1 being a place where I find it hard to get out of bed, so 2 is where I am awake, I might move around the house to use the restroom, but I’m too tired to leave the house and I don’t go outside or talk much, or do anything other than stay horizontal, read, and sleep. At level 2-3, I need my family to help me with making food, getting laundry done, that sort of thing. I’m very low-functioning.

The other issue to all this is recovery. I never had good recovery. If I was at 4, and we went out and did some things, and I got down to a 3, I could lay on the couch for hours and eat a good meal, and I’d creep up to 3.4. Recovery was measured by fractions, if it happened at all. And it never went back up to where I started that day. The rule was always that if I went below what I had that day, it took at least two days to get it back.

It was a week ago, Thursday, July 27th…

…that I noticed a strange uptick in energy, and the ability to recover a little bit of energy once I lost it. Both of these things have been very significant. I’m still sick, but in the last week, here’s what I notice:

  • My general operating level of energy is a solid 5, that I can push to a 6 if I eat really well and get good sleep. Good sleep for me means going to bed around 11pm, and reading until I fall asleep (usually midnight).
  • If I start out at a 5 (or 6! wooo!), and I go out that day and do something, run an errand or otherwise use a lot energy, and drop down to a 3 or 4 (it happens frequently, my stamina is still crappy), I can regain at least 1 point and maybe 2, by laying down and resting, and by eating a good, healthy meal.
  • “Resting” used to mean “sleep as hard as you can for four hours”, but now a rest means, “lay down for 60-90 minutes”. I don’t have to sleep. Frequently I’ll fall asleep, but if I don’t, if I just stay quiet and don’t move and read, the effect seems to be about the same.

I went to the naturopath again this week, and I asked her, “What’s making this happen?”

She said, “Astrographis is the most potent antiviral we have. We were hoping it would attack the epstein-barr virus, and the others.”

I asked what I was really scared to ask. It took a surprising amount of courage to speak. “Will it keep going? Will I just continue to get better until I’m normal?”

She was leaning back in the chair, arms folded across her chest. She looked happy, cheerful even. Her whole face brightened. “That’s our hope,” she said. “But if you plateau, and it seems like it’s not getting better, let us know, and we’ll up the dose.”

I walked out of that appointment feeling stunned. They actually think I can get all the way better? Dare I hope for such a thing? I’ve spent the last year using much precious mental energy to come to terms with being chronically ill. Is there a chance I could someday live as a normal person?

I don’t know, nobody does. But I’m not counting on it yet. I’m so grateful for feeling better right now, but I’ll need more than one good week to change my assumptions and expectations about my body. It isn’t that I’m being pessimistic. I have a lot of hope, but I try to temper that with a lot of reality and the duty I have to myself to make the best of things with what I’ve got.

Avoiding that call to accept reality brought me dangerously close to a serious depression. I spent a couple years declining while simultaneously being very lost in a future fantasy world. I dreamt of sailing around the world, I went to bed every night looking at trip reports and sailing blogs, I dreamt about doing the Race to Alaska and taking my little boat to Mexico. These are all great, beautiful dreams, but they weren’t realistic for me then, nor are they now. It began to hurt, daily, the conflict between the world my head lived in, and the one my body inhabited. I started to feel disconnected, traumatized. I had to come back to the now. It was painful but necessary, and since then I’ve been eeeking out a real happiness based in what’s actually in front of me. I’m still frustrated, I still wish I could finish school, walk a mile, have a job. But at least I’m present, feeling that frustration, instead of burying it in unrealistic fantasies.

Being present doesn’t mean not having hope, though. I have hope that something, someday, might really change things up. It’s that hope that brought me here, to someone new. I’d even tried naturopaths in the past, several times, and gotten nowhere, but I wanted to give Bastyr another shot, and I’m glad that I did. If nothing else, I’m back to my once passionate hobby of herbalism, and I’m loving every moment of that. The plants are carrying me back to myself, and back to nature. Whether or not they can heal me completely, they’re already healing me a lot.

 

2 replies »

  1. Congratulations! Enjoy every moment! I’ve also been having more energy, less pain. I’m not quite sure if it’s from new antibiotics or additional thyroid meds or both but I’ll take it. I hope your journey to wellness continues to improve. Best wishes! 💚

    Liked by 1 person

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