Questions and Answers (Q&A), Our Way
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Q. I used to listen to music often. But I'm just not doing it now that I have CFS or FMS. I miss it, but it bothers me. Do others have this problem? I almost can't wait to get away from it now!
A. We talked about music problems on the Nov 29, 2006 conference call by Elly's Gratitude Group for people with chronic fatigue syndrome (CFS), fibromyalgia (FM), and orthostatic intolerance (OI). Adapted from our email summary:
As first person on the call, I was offered some great hard-swinging big band hold music. Immediate fun and gratitude remembering big swing jazz as the music of my youth, playing saxophone in various school jazz bands, enjoying the fox trot and jitterbug in the Ballroom Dance Club. My conditions not only sidelined my dancing and playing, they forced me give up listening to all music for many years. There were multiple reasons. Sometimes even familiar songs were just too hard to follow, the music too much complicated stimulation. Sometimes, I couldn't even handle simple songs as background music because they demanded so much attention, I couldn't do anything else. Simple, familiar music prevented me from resting, or talking, remembering what I was doing. Often, the emotional pain of having given up listening to previously pleasurable melodies was too great, and so, off went the stereo, TV, radio.
Listening to music in the car isn't something I lost like so many people... because I never had it. I learned to drive at 18 when I was already a veteran of many weird bacterial/viral infections and experiencing a big stress load. I was never comfortable multi-tasking in the car. If I was the driver, I wouldn't let people talk, and wouldn't even let others in the car with me most of the time. I rarely enjoyed the car radio.
Singing, badly, some lines from the ethereal version of Over the Rainbow by Hawai'ian Iz Kamakawiwo'oli during last month's EGG call inspired me to download the song and describe my own musical history. Always a singer, encouraged by mother and relatives, sang for Jimmy Dean, the country singer, when I was six, learning the new Sunday School songs from my aunt, the music director, in order to lead other children's singing, always in the school chorus, never a soloist, usually a leader, and several years of different chorale experiences as an adult. I love music.
But not lately. Any music at all often causes feelings of desperation, changing channels while feeling like screaming or desperately needing to escape, feeling like there's a gremlin trying to punch its way out of my body.
Imagine my recent shock upon awakening to Jay Leno's tv show weeks ago, wondering what in the world was the wonderful sound I was hearing. It was the last 5 minutes of Leno's show. "You Are Loved (Don't Give Up)" sung by Josh Groban was like heaven, a reaction to music rare for me over the last 10 years. It isn't just Groban's voice, which is lovely, nor the words which, out of context of the music, seem too sentimental for me, the arrangement and small string orchestra I find impressive. It is the sum of all the parts. Somehow, I can't hear it often enough, playing it for hours, without interruption, while at my computer.
I've been wonder if my continuing herbal treatment is responsible for this impressive improvement in my ability to listen to music. More on that another time.
One trick for re-acquiring the ability to listen to music - if you learn a song or group of songs on a CD well enough, the brain doesn't have to work as hard to process it. Some people may be able to hear only songs with words while others may be able to handle only instrumental music. If familiar enough, and if there is no overwhelming emotional charge attached to it, your mind and brain may handle music just fine, without producing symptoms. There was a 2 year span in my history when I needed only one CD. I enjoyed it each and every time. It was a swing Christmas CD! I still like it. It can be a real money saver to need only one song or one CD!
For about two years, my experience of music has changed to they way it was. Enjoyment! I'm two and a half years into the Gilbert prescription chinese herbs / counseling combo program is definititely made it possible for me to enjoy music again. Even loud, even as background. Not every day, but most days. If I try to write checks with music on, I might still write the lyrics on the check, or what people say to me for that matter, but it is happening so much less frequently.
If you can identify that something causes, triggers, worsens symptoms, or you find yourself repelled from something your normally liked. Its okay. Honor that to save your energy and nervouse system. Hang in there. While we may have to give things up in the medium run (months or years), it isn't necessarily forever. There is a real possibility for reintroducing activities, foods we love, and such back into our lives, maybe even with greater enjoyment than we can remember ever having!
Member quotes about Music
"Elly, Thank you so much for your recap sent out 12/4. Your CFIDS and Music thoughts really hit home for me (even though I have FM). I have always loved music and dancing was one of my favorite pastimes until I got sick. In the last year, I have not listened to any music. Not in my car, nor in my home. I have a new stereo from last Christmas that is still in the box. I ordered several CDs through the mail last January. I was very excited about them at the time of ordering but they still sit on the shelf in their original plastic wrappers 11 months later because I have no interest in music. I never really thought about why I suddenly stopped enjoying music. Your posting helped me put words to the feelings; I think modern music is too complicated for me to follow right now. Every once in a rare while I will listen to classical but even that is too much most of the time. I used to listen to books on tape on my way to work. I had to give that up a few months ago because I found I was constantly rewinding to listen to segments again because I completely zoned the first time around. I hope that this is temporary and I will one day be able to enjoy both again." - K
Dear K, I went to the trouble of getting the books on tape special machine from the program for the blind and disabled only to find out I couldn't listened to books on tape, even when I really concentrated. I couldn't keep track of the characters or stay focused. I hardly made it through one book after weeks of trying. I sent the machine back a few years later. Seems I had to trip over it for awhile and have those thoughts that someday I'll want to do it, be more successful at it. Instead, I went to the quieter activity of reading Star Trek novels because I already knew the crew and I just wanted to spend time with familiar characters. It didn't matter if I didn't follow all of the alien plot. Reading has its own problems with comprehension, our hands going numb if lying on back, our necks hurting if sitting at a table reading, our circulation slowing so much if we stay in one place too long. Oh well! - Elly
What's on the Web
Everything You Ever Wanted to Know About CFIDS But Were Afraid to Ask-- From Someone Who Has It - Randi Reed, MusicBizAdvice.com
Q. What was the most difficult time you've gone through with CFIDS?
A. At one point I went through a very long period when the vertigo was so bad, I couldn't read, watch TV, or listen to music because the room would start spinning--kind of like when you've had too much to drink and it's not fun anymore--and I was too sick to do anything else. I'd always used music as stress relief along with having it in my work life, so not having it when I really needed it most was very difficult. (My sister later said it was "like the music died" in our family.) When I could listen to music again, I couldn't get enough and started playing everything in my collection. I still can't get enough! My list of CDs to buy is always huge.