Humans of ME/CFS
Imagine that you have the flu. You’re so exhausted that walking feels like you’re moving through quicksand. Your whole body aches. Your mind is foggy, and it’s hard to concentrate on anything. Every system in your body is off in some way—joints, muscles, brain, digestion—everything. Even though you’re not well, you have a meeting today so you have to go to work. You drag your exhausted, aching body out of bed, and by some miracle you manage to get to the office. All day you shuffle along, secretly praying the day will go faster so you can go home and go to bed. The refreshing sleep you need to feel better becomes the thing you daydream about all day long. Finally you go home. But when you get to bed, you can’t fall asleep—the ultimate irony. You lie there knowing if you could only get some sleep you’d feel so much better, knowing tomorrow you have to get up and do it all again, and wondering how you’ll manage. Now instead of one day, imagine that is your entire life. Every day.
That’s my life. It’s been that way for 11 years. My life went from active, social and hopeful to sedentary, isolated and lonely. Some days are better than others. And since I first got sick I have come a long way because I’ve learned how to live within my energy envelope and manage my symptoms. But every day I am sick. Every day I deal with fatigue that wraps itself around every part of me and pulls me down. Every day I am in pain. Every day I mourn the life I could have had, should have had. My entire life revolves around this disease. And the accompanying depression makes it hard to imagine that it will ever get better.