I come from a family of busy women. My mother always has a to-do list and almost never sits down. I wanted to be just like her.
Life had other plans.
It started with New Year, 2011. The fact I was asleep before midnight on my first Hogmanay (Scottish New Year) with my boyfriend should have been a give-away, but for two months I blamed travelling, university exams, and back-to-school-bugs for my debilitating exhaustion. It was like hitting the wall, only the wall was at best a five minute walk away. I felt permanently hungover even though I wasn’t drinking, and my muscles ached like I’d been climbing mountains, even though I spent most of my time in bed.
At the end of February I forced myself to walk the short distance into town to buy steaks for my cousin’s birthday. It took an hour and cost me two weeks excruciating pain and bed rest. I finally had to admit that something was seriously wrong.
Six months later, and no thanks to the medical industry, I finally identified my ailment as C.F.S. (Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or M.E.) – a diagnosis eventually confirmed by a doctor, but not until two years after I began seeking answers.
The defining symptom of C.F.S is fatigue, or more precisely, post-exertional malaise. In the U.S., where it affects between 836,000 and 2,500,000 people, the disorder was recently renamed Systemic Exercise Intolerance Disease (SEIDS)
At 21 years old, I fit the demographics. Point of onset is most commonly at 20-40 and 60-70% of sufferers are women. People with C.F.S. are quickly exhausted by any exercise. I’m not talking gym workouts here. I’m talking about any time I moved a muscle: eating dinner; changing sheets; washing my hair. I also had a multitude of other symptoms including pain, muscle spasms, insomnia, and memory problems, all of which are triggered or made worse by exercise.
There is no cure for C.F.S. Some people get better and some people don’t. There is no medication designed to treat C.F.S. and before my official diagnosis I wasn’t even on the waiting lists for therapy. The only advice that my doctors could give me was learn to rest.
This was not nearly as easy as it sounds. I had worked every summer since I was 17. I took extra classes, volunteered, and taught kayaking. My actions were my identity and for me resting meant the annihilation of that identity.
At school, the university disability advisers told me to drop out. I ignored them and resolved that I would fight my way through my courses, and my disease. I created a cycle of pushing myself till I collapsed, resting the bare minimum and then pushing myself on again.
This was not a recipe for success.
Within a year I was mostly bed bound. I dropped out of all but two of my courses and broke up with my boyfriend. I was living with my cousin and his best friend Raj, and they did practically everything for me: cooking, washing, shopping. I had to leave the bathroom door unlocked in case I passed out in the bath. I was grief-stricken.
The doctors offered antidepressants. The disability service still said I should drop out. My Mum thought exercise might help. When I began fantasizing about being hospitalized, I realized it was time to learn to rest.
At first, when I was too exhausted to move, rest was bearable, but the minute I started to feel better, I was bored. C.F.S. is like recovering from the flu; you can’t sleep solidly until you are better, but you aren’t well enough to do anything fun.
I turned to my laptop and retreated into a digital universe, watching Netflix marathons and conducting my entire social life via Facebook. I was still bored and now stayed up far too late.
With the flu this would have been fine, but with C.F.S. you have to accept that this could be your normal life for years. I decided I didn’t want a life lived virtually so I had to come up with a more effective system.
My new system has evolved over the three years since I started practicing rest, but its foundations were laid when a Norwegian girl moved in with me and the boys. We knitted together and I realized that both the knitting and the company made me feel better.
Raj taught me breathing exercises to make lying still more bearable during those times when plain rest is a necessity. I also listen to music and audiobooks, have baths, and do coloring-in, but the best solution is not to get too exhausted in the first place.
When I feel relatively well I practice restful activities like knitting, writing to friends, and practicing yoga. My mum gave me a fabulous book called Beat Fatigue with Yoga by Fiona Agombar which has routines specifically designed for C.F.S. sufferers.
With new strategies for rest at hand, I had a second problem: life required activities besides resting. The solution: prioritize, plan, and lower my standards.
I present you with my prioritizing table:
Since C.F.S. can cause memory problems, a system that includes writing down tasks can help. Priorities run diagonally from top left to bottom right. The only things that ever go into the Must-Today box are things that keep you alive. You must eat, sleep, and stay warm. And if you have C.F.S. you must rest. If you think you must wash your hair today then lower your standards. Either you want to wash your hair, or you feel socially obliged to wash your hair. It’s a want or an ought. And you can do it later.
You can end up somewhat stuck in the Today boxes, but this was not a problem while I was a student. I could generally manage the few weekly musts, like starting essays or booking trains home.
I didn’t come up with the second part of my system until I graduated in 2013. I got a job proofing texts, and found myself once again struggling to find energy for everything I needed to do. My job is ideal for someone with C.F.S. as it desk based and has no deadlines, but trying fit all my work hours into the week on top of everything else was overwhelming.
If I prioritized day-by-day, I ended up working every weekend because I had prioritized rest during the week. It became clear that being stuck in the Today box is a problem if you want to be a responsible grown-up, and so my system evolved.
I now use a magnetic whiteboard to plan out my upcoming week (hour-by-hour) using magnets for all recurring tasks and a whiteboard marker for anything unusual. I leave around half my time free for unscheduled rest, things I didn’t manage yesterday, and spontaneity. If I am really ill, I take things off the board altogether, but often I can manage bad days simply by redistributing the magnets.
I still feel guilty when I have to take sick days from work, especially if I have had a nice weekend, but since learning to rest I have gone from studying three hours a week to working 28 hours a week. I am back living with my cousin’s friend Raj, who I am now dating, but I can manage most housework, do the shopping, and have a social life.
I now firmly believe that everyone, whether you live with C.F.S. or not, should set aside at least a couple of hours a week in their schedule for a fun restful activity. By resting mindfully you create energy for the things you really want to achieve.
You might wonder why I am talking about an illness that makes exercise dangerous in a magazine about fitness, but having C.F.S has meant redefining fitness for myself. If I rest properly I have less pain, less fatigue and can manage more with my days. Resting is my exercise, a regular part of my fitness routine. Some days I love it, some days I hate it, but I do it because it makes me well.