This post is for people who have reached over 80% capacity, but aren’t fully out of the woods. I’m writing this with three specific followers in mind, in case the things I learned the hard way helps you or anyone else get the rest of the way out.
This is a follow up to my recent post Why Graded Exercise Didn’t Work for Me (and What Did) which explains what ten things I had to do before my capacity expanded.
Here are some things I found helpful to reach full capacity and remain healthy:
1. Keeping activity fun
It helped to make physical activity enjoyable. An amazing woman named Anaya, who recently shared her recovery story, mentioned this in our chat and it really resonated with my own experience.
During a mild period in 2018, I found renting a full-powered electric bike a whole lot of fun. The e-boost (which I may have used 95% of the time…) helped me easily keep up with my husband biking around Lake Merritt in Oakland.
When my health really improved in 2019, I found longer walks more enjoyable than the treadmill. And when I was closer to near full capacity, I found hilly walks equally as good for toning my butt as the elliptical machine. But I could also stop, take a break, and also enjoy nature or a neighbor’s pretty flowers.
It was me who had to figure out what was felt right for me, and what’s enjoyable for you might be different.
Some people like to track themselves, but my full recovery did not involve a self-imposed daily report card or symptom tracker chart. It was more doing what felt good.
2. Doubling down on restoration
ME/CFS isn’t about what you can do – it’s about what you can recover from. Write that down, y’all.
If you feel stuck at 80% either physically and/or mentally, consider that it’s not a fault in your movement routine, but rather an opportunity to support your body’s repair mechanisms.
For me to recover from exertion, that meant helping ensure brain was sending parasympathetic messages to my body and supporting it’s repair mechanisms.
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- Being careful about the media I consumed (cutting out anything high-adrenaline; choosing comedies over drama and violence and avoiding all news)
- Using my imagination to create healthy sensations in my body and generate healthy neural pathways associated with activity for an hour per day as part of the DNRS program (I go on “calming dream vacations” or relive joyful memories for 15 minutes per day post-recovery.)
- Optimizing my sleep quality, where most of our recovery and repair happens by getting on healthy circadian rhythm (a 9:30 pm bedtime and morning sunlight exposure)
- Unplugging for at least the first 90 minutes and last 90 minutes of the day and removing all mobile notifications
- Twice daily meditation
- My restorative morning routine and calming nightly routine
Ask yourself throughout the day: “Is this activity promoting a parasympathetic recovery response or a sympathetic fight-or-flight response?”
3. Increasing my blood flow without significantly increasing my heart rate
I’m not a health professional, and you are the expert on you.
But what I, Liz, personally found helpful when my capacity really began to expand was enjoying easy walks, restorative yoga positions, and eventually very light weights a few times a week.
Another thing I found was restorative and improved my blood flow was spending time in the sauna.
I started very easy in the sauna (a few minutes, then a break, then a few more minutes) at a time when my body could handle it. I then worked up to longer, eventually 40 minutes with one or two short water breaks. I found a good a temperature for me (nothing intense) which helped me gently break a sweat after around 15 minutes.
The sauna elevated my heart above its resting rate, but for me it did so gently and was easy to handle.
Boy, I love sauna time. Speaking of which, my best friends said this photo is very “hey boys.”
The sauna tones the left chamber of the heart. The sauna might not be appropriate for you at this point in your recovery. We have to do what’s best for us, and this stuff might all be out of your zone right now, and that’s perfectly fine.
If you’re having a tougher day, pulling back is doing something and is part of the healing process.
4. Not trying to prove something with a crazy target after hitting 100%
It’s good to have long-term health goals, but setting a crazy target to prove something to myself and the world set me back.
My health improved rather quickly over the course of 5 months of my final trajectory that began in January 2019. (My upward trajectory actually began after one of my worst crashes, but I finally had all the pieces in place by then. I wrote about these ten pieces.)
That April, I began to go beyond leisurely walks and started swimming at my community pool. By May, I was walking 2 hours on the treadmill, swimming 30 laps, and doing a high-resistance elliptical. Note: I was born with a unique heart, and this was over 3 times my pre-illness levels of activity.
Confession: I may have gone a little overboard in attempts to have the perfect beach body.
My body felt amazing. But I got caught up in the “do more each day” mode. And I began to slack on my restorative, brain calming activities all while stress load began to increase (see next point).
Note to self: Liz, you don’t need to set some crazy target or have a perfect beach body. You don’t have to prove you’re healthy. You just have to be healthy. That means enjoying life, doing a healthy amount of exercise, and feeling good in your body.
James, an inspiration of mine, with a helpful ME/CFS recovery YouTube channel, recommends waiting until you’ve been symptom-free for at least 6 months before doing cardio-intensive exercise (if I remember what he said correctly). I agree. Also doing what feels good, while continuing to support your body’s recovery mechanisms.
Today I’m going on hilly walks twice a day, light weights a few times a week, and swimming… and feeling good. This is more than I was doing pre-onset.
5. Avoiding the “stress creep”
The “stress creep” caused multiple setbacks throughout my recovery journey.
This could be caused by:
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- Work stress. (I’d have to quit my job in 2017. And today I remind myself of my new definition of success when I start to feel the pressure.)
- Increased adrenaline-zapping online activity during a particular period. (For example, in 2018, I got caught in Twitter activism and tried to take down a Facebook scam ring that ended up a WSJ story. I had a come to Jesus moment after the stress build up from these things led to a bad relapse…)
- Getting caught up in the stress of planning for an event. (For instance, my partner’s 40th birthday. Or my wedding seating chart, which led to a blip shortly after I fully recovered in Summer 2019.)
None of these things would trigger a crash in itself, but over time, and combined with other triggers, while ignoring my recovery behaviors, they could weaken my body’s ability to recover from exertion.
Another source of the stress creep was getting caught up in a turbulent news time. I had to press pause on my news monitoring and reacting habit. Letting my brain and body heal have helped me be able to do more now for things I care about.
The first signs of the stress creep, for me, is a decline in sleep quality and racing thoughts. Checking in with my body (more so gently listening to it, rather than scanning for symptoms) has been helpful to my recovery.
I eventually learned to avoid the “stress creep,” which has been key to my recovery & continued wellbeing.
I know the signs and how to also turn the tide by committing to my healthy routines and calming activities.
Final words
Our brain is the most important “muscle” when it comes to how we’re able to recover from exertion. It was key for me to keep it calm.
Putting my brain health first, keeping it fun, and sticking to my restorative healthy routines helped me get and stay at 100%.
PS. Some of this content may not apply to where you are on your recovery journey. Pulling back was a key part of my recovery. I’m working on special materials for people currently living with moderate ME and severe ME. I will also be recording audio versions of posts for easy listening. Please leave a comment if something resonated with you or if you have something to add.
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