By the end of December 2014, I was too, too tired. I didn’t need to sleep more, and I was eating healthily. Some days I was couldn’t shower, wash my hair, speak, drive, or work. As sufferers of CFS / ME will know, tiredness is to CFS what forgetfulness is to Alzheimer’s – that is, another level. I wasn’t depressed (although the long list of things I couldn’t do affected my mood) and although I was burnt out, I didn’t have burnout. I felt crazy. I felt lazy. But I wasn’t either. I was sick. Months later, I’m in recovery. I may always be in recovery. Some people struggle to ever function normally again, and others bounce back pretty quickly. I knew that CFS / ME would change my life in drastic ways. But I didn’t foresee the blessings it would bring with it.
What is it?
Well, here’s the Wikipedia page. No one knows a lot about it, except that it receives too little research funding, and courts much controversy. It’s called Chronic Fatigue Syndrome, Systemic Exertion Intolerance Disorder and ME (myalgic encephalomyelitis). Causal theories range from genetics, viral infections and hormonal deficiencies. This is a good piece on the stigma surrounding it, and this one on how different people suffer differently, perhaps as a result of CFS / ME being an umbrella term for a host of related diseases that no one knows much about.
I jotted the below down a few months ago. It sounds foreign to me now, but it’s important, because I felt like that. I became sick under ideal conditions. I have a supportive family, a wonderful, caring and medically knowledgeable husband, great friends, world-class medical resources, financial means, and a workplace that supported my every need. Not everybody who gets sick is so lucky.
Please don’t think that the blessings I’ve received as a result of illness are common for everyone who has CFS. One of the things I feel so guilty about is that CFS is often considered a first-world disease. This doesn’t mean it’s not a real thing, but that rather, that people are suffering, unsupported, misunderstood and undiagnosed the world over. Here’s to them.
It forces you to redefine your idea of success. Why do we work? You have to ask for help and become vulnerable in relationships where you’d far rather appear strong. You need to believe your body over your mind. You have to celebrate small successes and live in the moment. You think. A lot. Especially when you can’t read or watch TV. You do the 20% that you hope will yield the 80%. You pray. Sometimes in desperation, sometimes in conversation. You read books. People reach out to you who you don’t expect to. Friends stand up in unexpected ways, and bring joy. Others stay away. By being weak, you surprise yourself with strength. You learn to communicate better with the people around you. You treat yourself like a toddler – making yourself snack healthily, putting yourself to bed, keeping yourself warm. You learn about the uncertainty of medical professionals and that what we know is merely a tip of an existential iceberg. You stop taking things for granted. Mostly. You never learn that the way you feel today won’t last forever. You dream. You’re more creative. You shop less. A lot less. You learn that a good way to gauge how well you are is to imagine a hypothetical scenario in which you’re given a blank cheque to shop or travel the world. If there’s nowhere you’d rather be than in bed, you’re not ok. You begin to understand that your mind is part of your body. And that your body is intricately connected to your mind. You stop worrying about irrelevant things… well, some of them. And all of what people think of you. You discover the power of eating the right things (and even more so of not eating the wrong ones). And that exercise isn’t only running and sprints and heavy and push and to the max, but sometimes a stretch, a walk. You learn about the joys of forced surrender.
Related: Setting a bedtime alarm
ME Association: http://www.meassociation.org.uk/
Recovery from CFS (a medical educator’s account): http://www.recoveryfromcfs.org/
Seven things that helped me in recovering from ME/CFS: http://borderskipping.com/2014/12/28/seven-things-that-helped-me-in-recovering-from-mecfs/
I know this is a weird, scary topic. If you have CFS, or if you have any questions about my journey, please leave them below – I’m happy to chat.