Humans of ME/CFS
I have been suffering from CFS for almost 30 years. I'm alone in life and have to support myself, so pretty much any energy I can drum up in a day is spent on working, with little or nothing left for those things that make life wonderful—family, friends, hobbies, love. I used to sew and make most of my own clothes. No more. I used to act and sing in community theater, opera and bands. No more. I used to draw. No more. I used to take evening classes in languages, art, astronomy. No more.
My weekday evenings are now spent watching TV, reading and doing puzzles. I'm bored with so little stimulation, but I don't have the physical resources to do anything about it. Weekends are the only time I'm able to do errands or chores; I have to triage them very carefully. Buying groceries gets done because it has to. Vacuuming does not. I shower (sitting down) no more than once a week (I'm embarrassed to say I've actually gone as long as three).
Since I look perfectly fine, people are reluctant to believe that I'm sick and will tell me, "It's not just you—everyone gets tired!" They don't understand—I don't "get tired." I'm never NOT tired. Think about a typical day for most people: You're up at 6 a.m., make breakfast for the family, get the kids off to school, go to work, take the kids to soccer/piano/dance in the afternoon, come home and make dinner, help the kids with their homework, get them bathed and off to bed, throw in a couple of loads of laundry, and finally, finally, about 9:30 at night, fall onto the couch exhausted. Think about how you feel at that point. That's how I feel when I wake up in the morning, except now I have to get through an entire day.
And adding to the daily stress is the side-effect of noise sensitivity, not the easiest thing to deal with in today's raucous world. Oh, yes, I've applied for disability, unsuccessfully. I'm told that this is normal and that I just need to keep applying until approved, but it's a lengthy, energy-consuming process, and I'M TOO TIRED! I think about suicide every single day. What's the point of continuing, when life is all struggle and no reward? Yes, I'm depressed. Wouldn't you be?