– Writing by Lenka Goldsmidova and Susan Morris –
– Art by Elizabeth D’Angelo –
Many of our readers report that the only way their ME/CFS symptoms started to improve was by doing less than they thought they could and less than they wanted to. And than less than that. And then less than that.
Learn more about the science and art of doing less so you can do more: How to Practice Pacing
LENKA AND SUSAN DO LESS
Lenka: My extreme weakness did not come from muscle weakness. It started suddenly. I was stable and slowly improving for a long time. Then one day I did some mild housework, and the next day, I was too weak to eat.
What helped me to return my strength was not exercise, but the opposite: rest and no effort to train my muscles. Doing only way less than I am able was definitely the key.
Some people feel they want to exercise to strengthen their muscles, but in my opinion and experience, my weakness from ME was not caused by muscle issues. For me, there are metabolic issues which weaken even normally functioning and strong muscles.
Susan: This has been my experience, too. Resting helped me improve over time and have less severe reactions. It takes time and patience.
Lenka: I rest more than before, even more than is comfortable for me, more than I feel is necessary. Paradoxically, doing less has helped me build more strength than training my muscles. It seems that the rest strengthens the metabolism.
Adding more rest helped me to change my weakness from a negative trend to a positive trend. But every time I overexert, it slows or completely destroys my improvement.
Susan: Along with limiting and pacing activity, and not pushing through all the time, resting is the only thing that has worked for me.
For a long period, I was very limited. I very slowly improved, so now I have periods where I can go out for short periods and the payback is not as severe. I am not ‘stable’ but I at least I have some better quality of life.
Lenka: For five years, I pushed myself to maintain “muscle strength” and “condition.” But my abilities were gradually worsening, until the moment when my body couldn’t stand it anymore. When I started rest with no movement almost all day, I saw the first permanent improvement in the whole history of my illness.
Susan: It took a lot of discipline for me to self manage and not keep trying to “push through.” It is a laboriously slow process with no quick results, but I am glad I stuck to it.
For many years, I just went through the ‘boom and bust’ cycling of resting for several weeks to gain a little energy then pushing myself for 2-3 days to catch up on different tasks. Now I am pacing myself better.
Lenka: Not only discipline, it is also a question of money and care. Luckily, I now have a space to test pacing and wow it works!!!
Susan: I am very lucky to have help with cleaning the house which I am very thankful for and food shopping online for delivery is a lifesaver for me.
Lenka: I have to stop doctors from judging too quickly about the possibility of deconditioning. I have lost weight and muscle mass, but I still believe resting is what gives me strength.
Watching TV is not resting. Listening to music is not resting. Resting is the most boring thing and the least favorite thing I do. It is not appropriate when healthy people say they would love to have so much rest. No one would like it.
Susan: Yes I agree it can be boring and it feels like you are not getting anywhere. Progress is slow but I found it is worth persevering and trying to ignore other people who are always trying to ‘encourage’ us to do more all the time really wears me down.
Lenka: Now I am completely sure rest works much better. We can be lucky that something works, at least a little.
Susan: I watch the clouds and trees and the wildlife in my garden to fill the time.
This page is part of the online guide: How To Save Spoons: A Self-Advocacy Guide for ME/CFS. Art by Robin Mead and Elizabeth D’Angelo.