Exercising Safely Using Nano Steps

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By Margo Kay

Note: Margo, who lives in Missouri, has been a member of our community since 2011.

I have tried many exercise schemes in my two and a half years with CFS, failing miserably at all of them until quite recently. But I finally found something which works for me; I call it the Nano Steps Approach to Exercise.

Failed Experiments

The first exercise regime I tried was interval walking: walk 3 minutes, rest 3 minutes. The result was a spectacular crash, which took a couple of weeks to get over. Even using shorter time intervals didn't work.

Then I tried strength training using exercises geared toward elderly people with osteoporosis. I made good progress at first, but when I got to five repetitions, I crashed. Discouraged, I was reluctant to try again.

Next, I tried "baby steps." I made a list of every sub-step it took to accomplish a goal, and then each day or two I would attempt to do one more step towards the goal. I quickly realized what I thought were baby steps were in fact too much for me. Frustrated, I stopped.

Finally, I tried heart rate monitoring but found that although I felt a bit better, I was losing stamina and still crashing. I discovered I did better going on instinct rather than by the numbers.

What I learned from this experience was that the duration of an activity is just as important as heart rate in my avoiding a crash. (I realized only later that this could explain a lot of the trouble I had had with earlier exercise/activity programs.)

Finding A Model

Late last year, I found myself in a terrifying relapse where I was suddenly living on the first floor of my house, unable to use the steps to either the basement or the upstairs, and using my scooter to get around the downstairs. I knew I had to find something to go forward rather than backward.

About that time, I read an article by Dianne Timbers, a woman with CFS who had gone from completely bedridden to living independently.

The secret to her progress was to make tiny incremental changes over long periods of time, starting with activity she could tolerate on her worst days. Her approach appealed to me because I had always had trouble deciding if it was a good enough day to attempt exercise.

I was in awe of what she had accomplished, at her persistence, and her patience, grit and tenacity. The instant-gratification part of me was a bit horrified that it took her a number of years to reach her goal, but still, I was intrigued and inspired.

Creation of the Nano Steps Program

I decided to try an approach based on two principles:

Start with something you can do even on your worst day.
Remember: no step is too small.

Since my baby steps were clearly too big, I decided to call my approach "nano steps."

My first goal was to increase my walking stamina, which was then about 10 steps. (Anything more risked a crash.)

I started by driving my scooter between my couch and the kitchen/bathroom area, about 25 feet away. Each day I would park the scooter about six inches further back toward the couch. It worked: I was walking further and not crashing. Seeing progress gave me the motivation to keep going.

I sometimes noticed a you-need-to-stop-right-now sensation just as I was completing my walk. I knew from experience that this sensation, if ignored, would likely result in a crash.

Since I knew that the key to expanding exercise safely with CFS is to be active at the edge of your abilities, I decided I was doing exactly the right thing! And, after several weeks, I was able to walk the entire distance from the couch to the kitchen/bathroom and back.

(I should note that on bad days, I gave myself permission to stay at the same distance as the day before. Also, I think one time I did go forward a couple of feet when I was having a really bad day. And I won't deny cheating a time or two and driving all the way!)

Further Experiments

Since I still didn't have enough stamina to walk around the house as I pleased, I decided to continue the same process by taking a circuitous route around the house, about 40 feet. As my stamina got better, I found I could increase the length of my steps from six inches to 12 or 18 inches.

Once I could walk those 40 feet, I started on my next goal: the stairs. The first day I went up one step and back down, three times during the day. The next day I went up and down two steps three different times during the day. The day after that, it was three steps, etc.

There were a couple of times where I had to pause, as with the walking. One time, when I had worked my way about halfway up, I had an unrelated crash and felt it was safest to start over. But soon enough, I made it to the top of the stairs and back. I was ecstatic. My little world had just expanded by about 1000 square feet!

My next goal was to walk across my backyard to the car, a distance of about 40 feet with a downhill slope to the carport, thus uphill back to the house. I figured that since I could walk 40 feet, and I could do steps, I should be able to walk to the carport and back. Feeling overconfident, I turned my nano steps into five to eight foot increments.

Although I did make it out to the car twice, it became clear I was pushing too hard. I was too fatigued to do the nano steps every day, and there was too much else going on right then: a number of trips out of the house and other stressful events.

I was struggling to keep up, so I suspended my efforts to expand my activity level. But now I have "cleared the decks," so am in a good position to return to my nano program.

Summing Up

In thinking back to where I was at the end of last year, I definitely feel a big difference. My stamina is better. I can stand longer without having to grab a chair. And I need less help. (During that scary relapse, I hired a friend to help me a few hours a week with shopping, errands, laundry, etc. I recently cut her visits from two per week to one.)

I keep a chart with a 0 to 100 scale, marking it each week with a dot. I was gratified to see that when I was actively nano-stepping, the dots went higher five weeks in a row - the first time that has ever happened! And the scooter now is "garaged" permanently in the back of my car, for use on trips out of the house.

I still have a long way to go to reverse a lot of deconditioning, and I still struggle with impatience getting the better of the evidence that small steps are best, but I am just immensely relieved to have finally found a way to expand my activity level safely. And I'm looking forward to lots more of those upward-trending dots.