Humans of ME/CFS

Before CFS, I was an outdoor girl who loved walking in the mountains, swimming, gardening, cycling, dancing. I still am; I just can’t do those things much anymore.

I sang in choirs, played the piano and was very sociable. I had just done a Master’s degree in writing, seen my first grandchild born, and rebuilt our home after an earthquake. I was 58.

I am so grateful that I had those 58 years. Grateful, too, that I was never bedbound for more than a week at a time.

Now I live in a way that no one without CFS can understand. Each day, there is a very limited amount of energy available—sometimes more, sometimes less. I find creative ways to enjoy the most satisfying life possible, whilst trying never to overspend energy. I know if I do overspend, I run the risk of being bed-bound for a week, a month or years. There is no easy way back.

I live in five-minute portions. I do things I love for five minutes, or three minutes, or one minute. I do jobs in five-minute stages. I rest in between. I play with grandchildren for 10 minutes. I drive up the mountain and walk for three minutes. I do outdoor jobs on good days. In public buildings, I sit and close my eyes and cover my ears for five minutes—or even lie on the floor to recover.

I am getting better. But I can never plan my energy in advance. So I can rarely be with people.

I get ill indoors from mild chemical housecleaners, damp, mold, carpets, perfumes. I get ill outdoors from rotting vegetation after rain, from wind, pines, sea breezes.

I get ill from noise, loud voices, machines, music, vibration in cars; from talking and from listening to people talk; from strong sunlight and electronic signals.

It’s crazy. Anybody who can understand this stuff, or even believe it, is a saint. And anyone who cares enough to be around it is a truly compassionate soul. Fortunately, I have a couple of those souls in my life.

CFS, by its very nature, makes for a totally solitary life with truly massive limitations. It’s slower. It’s boring. It’s without much hope. It calls for huge reserves of spiritual strength, self-compassion and optimism at a time when the brain is often fuzzed up with fog, and the body is crying out for healing.

As people, we have learnt incredible endurance, patience, forbearance and acceptance. We’ve learnt to find joy in simple things and grace in small things. We’ve had to.

We often can’t even socialise with, or talk to or phone each other, as low energy and brain fog limit all those ways of communication. And yet, we continue in complete intelligence and avid interest in life from the sidelines.

I really do believe that if we all recovered we would offer a powerful pool of human resources, of vital importance and relevance to this modern, fragmented world.