I Have Chronic Fatigue Syndrome. Here's How I Cope.
It started with a simple sore throat.
A few days later, when my throat still hurt and I could barely get out of bed, I went to the doctor. It's the flu, she said. You'll be okay, she said. But after two weeks of cold-pressed juice and bed rest, things hadn't changed.
A blood test showed a reoccurrence of glandular fever. Three months later, I was still struggling with full body pain, brain fog, complete fatigue, and regular sore throats. Six months later, the words "chronic fatigue" were being bandied about by my doctors. A year down the track, I went through a series of tests to eliminate other possibilities, including lupus, heart disease, and multiple sclerosis. When nothing came up, it was official: I had chronic fatigue syndrome (CFS.)
It's a disease without a known cause or cure. One that occurs more commonly in women aged 30 to 50 years old. Often, these women are ambitious, high-achievers.
I had just turned 32 and was running my own business when it struck. I'm 34 now; two years and two months down this path. And every day, every minute, I feel it. But I manage.
Here's how I've learned to cope, both emotionally and physically, and live a somewhat normal life.
Get a good night's sleep
I put good-quality sleep over everything. A lack of sleep, or a night of low-quality sleep, almost immediately exacerbates my physical symptoms. Typically, this means full-body pain so intense that even wearing clothes hurts. To combat this, I try to stick to a strict sleep schedule, going to bed and getting up at the same time each day.
If I have trouble getting to sleep, I use the 4-7-8 breathing technique, which is a miracle worker. When I first wake up, I sit outside in daylight for 5 minutes. When the sum of these parts is a night of good-quality sleep, it has a major impact on my physical well-being.
Make room for joy
I carve out time to inspire and motivate myself. One of the more disheartening aspects of this disease is that it strips you of joy, in a way. Famous jazz musician Keith Jarrett, who suffered from CFS for years, is quoted as saying: "Suddenly, music means absolutely nothing."
While I no longer feel that rush in my head when I do something I enjoy, I still push myself to do the things that used to bring me those feelings of inspiration and empowerment—whether that's reading a stirring memoir (Wild is a fave), pinning on Pinterest, or watching a great movie.
I stay as active as possible. While too much physical activity can cause a spike in my symptoms and a massive energy crash, it's important to remain somewhat active—as my body allows. I bought a Fitbit a year in, and I have been using it to build up my activity levels slowly.
I can't yet do the 10,000 daily steps recommended by experts, but I can now do enough that I can take a walk on the beach, get to any store in my small neighbourhood, or visit friends using public transport. Being able to be independent again feels like a huge accomplishment and has been great for my mental health.
I make time for friends. In the first year or so, I didn't have the energy to go out, so my social interactions were limited to phone calls and text messages. These days, however, I can go to barbecues or have dinner with friends, if I "manage" my energy. This makes it hard to be spontaneous.
If I socialize, I usually spend the next day or two resting. But it's worth it! I have always taken social interaction for granted. It's only now that I understand the importance of socializing and the impact it has on our well-being.
I do basic yoga stretches and meditation. Before I got sick, I had just started doing yoga. I had never meditated. Now, I do a little bit of both. I use an app to do 10 minutes of extremely basic yoga stretches each day. For the most part, I do these just to maintain some strength and flexibility.
Meditation, on the other hand, has been a lifesaver. It is amazing to think that just 5-10 minutes of mindful breathing can have such an effect, but it does. It has helped me maintain a positive and calm outlook throughout this whole ordeal, which is priceless.
Put yourself first
I prioritize my overall wellbeing. Every day, I make sacrifices, because my overall health ranks first. Sometimes I miss out on social occasions; sometimes I drop everything—including the casual work I do—to rest. It's a juggling act always, but two years in, I have some semblance of control.
Slowly but surely, I'm finding my way back to a healthy life. Hopefully this helps you do the same.
Words: Bryna Howes