Questions & Answers: How it Feels

An old friend asked me recently, “I still don’t really know the depths of how bad you can feel. What are most days like?” Here’s my answer.

Maybe this will give you some insight: Most of the time I lie here on the couch and can read on the computer most of the day. Only on an extraordinarily good day can I hold a book or magazine to read. That doesn’t happen often. Most days I can watch a little video, but it’s rare that I can watch video long enough to get through something like an episode of 30 Rock.

I can chat with Chimp, but I can’t talk on the phone often. It’s too tiring. I can’t sing any more, either. It takes too much energy, and my muscles (which includes the diaphragm) are too wasted to give me good breath support for singing.

I can walk from my bed at night to my dayroom (about 20 feet) in the morning and back to my bed at night. Right now, after my Christmas Eve crash, I’m mostly not walking to the bathroom. Only if I’m having a really good day, which I haven’t been lately, can I walk out to the living room. I have never seen the guest room upstairs in person. I have been upstairs four or five times in the year and a half I’ve lived here. I have thought about buying a stair lift.

I can sit up for five minutes, but I can stand only for a minute or so. I have very low cardiac output, and if I stand, my heart can’t pump the blood out of my feet…it all starts to settle there and feels very painful very quickly.

Some days I can type a bit – most days enough for a short email, but not enough to write a long email.

As for what it feels like in general to have ME/CFS, imagine having the body aches and general sense of feeling really sick that you do when you have the flu, and add to that the dizziness and mental dullness of a hangover, and the overwhelming tiredness of only sleeping a couple hours in a couple days. That’s what I feel like all the time, even on my best day.

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4 Responses to Questions & Answers: How it Feels

  1. Kassy Fatooh says:

    Yup, that’s about where I’m at too, and caring for two sick teens. They say we’re liable to get sicker when menopause hits. Oh boy.

  2. Pingback: Happy Blogiversary to Me | No Poster Girl

  3. Alison says:

    I think this is the first time I’ve come across someone mentioning not being able to sing because of CFS, besides myself. I can sing softly sometimes, but when I do I really feel all the energy it’s taking out of me. When I try to sing loudly I always get sore throats. I feel like I’m tearing my throat. Then I try and go as long as I can and let it heal before I sing again. I’m wondering if you are a good singer and had vocal training/knowledge. I wish I had.

    • Jocelyn says:

      Yes, I was a singer growing up – church choir and musicals, school choir starting in elementary school, choir, theatre, and madrigals in junior high and high school, and then I went to NYU to study theatre. I dropped out of acting school after a couple years for a variety of reasons, but the three people in my studio group who were on approximately the same vocal level I was when we started out have netted Broadway gigs, national tours, and cabaret performances. Even after I stopped performing, I sang all the time. I always had music on and was singing along – until I got sick. In the first few years, it used to be a pretty good measure of how I was feeling – when I was doing a bit better I could sing some, and if I worsened a little, I couldn’t. Eventually I got so much worse that it just became impossible.

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