Guest Post: Wind Up Clock

The final post in this stretch of guest authors comes from Claudia Goodell. Claudia is among the most proactive ME/CFS patients I know, trying to make a new life for herself with this disease while also participating in advocacy.

wind-up-peopleI am one out of 1 million Americans waiting for decades in a medical “no man’s land” for solutions to a debilitating disease with no known cause, NO approved treatment and none in the pipeline. We have no designated specialists, and no cure in sight. We feel abandoned by our government who funds research on our disease at a rate less than that of male pattern baldness, we feel failed by the researchers and drug companies who can’t seem to make progress fast enough, and we feel ostracized by the medical profession who throws us around like hot potatoes hoping someone else will handle us. If we are fortunate we have a support system and receive disability, but many struggle alone with no finances and no one to help them, some of whom are completely bedbound. We are so determined to return to the healthy active lives we once knew that some of us will try whatever we can to get well.

When I was in graduate school my professor of Auditory Neuroscience and Psychoacoustics lectured us about sound pressure. In teaching us the mathematical equation for sound traveling through the acoustic system, he made sure we understood that if one looked at only the first part of the equation it would appear that an acoustic signal actually gained energy as it passed through the middle ear. However, this increase only compensates for the loss of energy that eventually occurs when the sound enters the fluid filled inner ear. The net amount is actually a slight loss in energy, and if you see the entire equation this is clear. In order to make this point he taught us, “There ain’t no such thing as a free lunch” (TANSTAAFL), meaning that even if something seems like it is free, there is always a cost, no matter how indirect or hidden.

While I didn’t retain much of my hearing science knowledge, I remembered TANSTAAFL, and ME/CFS reminds me of this every single day. It’s as though I am an old fashioned wind up clock ticking along and then running down. As I run out of energy my tick tock sound gets slower and slower.  I sit on the table for various intervals, until someone randomly walks by, sees me and decides to rewind my mechanism. I may be mid-way between fully wound and fully spent; sometimes they rewind me all the way, and other times just a few rotations. I never know how much energy I really have. I just keep tick-tock-ing at whatever level I am capable given the amount of energy at any one time.

I worry. I worry that if I stop ticking I’ll suffer a slow, progression of this awful disease that forces me to stop moving.  It’s not because I want to stop moving, or because I’d rather sit around than be active. Nothing could be farther from true. But every time I feel well enough to move, and I get out there and do the things I love, at a much reduced level than before the disease I am left feeling a relapse of symptoms for days, weeks or months. This is not motivational, but fortunately I was an athlete before becoming sick, and I am a determined person.

I do all the good things I can to stay in control of my symptoms as best I can. I avoid foods and drinks that my body doesn’t tolerate, and I take only the few medicines and supplements I really need. I insure ample good quality sleep, drink plenty of water, get regular massage, meditate, walk, do yoga, advocate, and I paint. Although this practice gets me close to maintaining some sort of balance between staying somewhat active and being too sick to move, unfortunately none of this is enough to create what could even loosely resemble a full life. I am unable to work, unable to travel without relapsing, unable to participate in sports at a level I would like, and socializing is minimized. So, to quote a famous movie, “I’m not dead yet”, but I’m not really living either. I’m occupying no man’s land with the rest of my fellow patients, and none of us wants to be here.


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11 Responses to Guest Post: Wind Up Clock

  1. Ess says:

    Great article, Claudia. ‘Occupying No Man’s Land’ . . . indeed, ‘this’ is not living life–and the ‘march,’ so to speak, for ESCAPE from No Man’s Land is on!!! 🙂

  2. Sue says:

    Claudia, you captured exactly how I feel right now.

  3. Nancy Blake says:

    Please, please – pay attention to what happens….Read Ramsay – complete rest gives the best prognosis – it is being scared of stopping that is keeping it going – read Enlander on the benefits of rest – conserve your muscular energy for doing things that are really important – a recent study by Jason et al found that people who consistently keep their activity level below their perceived energy level will gradually build up a greater capacity for activity. It is the exact opposite of what would happen if your aerobic metabolism was working, but it isn’t. Resting is like putting money in the bank – it’s giving your body a chance to figure out what it needs to do to get better. Look at the Workwell studies, exercise that uses that bit of anaerobic metabolism before the aerobic metabolism kicks in…Be really vicious about not doing more than you feel OK doing…and doing a bit less. You will improve…..

  4. hezza says:

    Please please pass on how to “ensure ample, good quality sleep”.

  5. kathy d. says:

    All good points, but I echo the question about how to get “ample, good quality sleep.” I
    say this after barely sleeping for three days. Today I woke up after an hour of sleep, was up and slept maybe another hour.

    Last week one day I slept 2 hours, up, then another 2 hours. The next day, slept 3 hours; that was it. Lack of sleep makes me (and I’m sure everyone else) incapable of taking a shower, going outside, doing anything. I can’t even figure out what’s going on in TV shows and can barely read, sometimes I can’t do that — and that’s my escape and relaxation method.

    • Jennie Spotila says:

      Disrupted sleep and other sleep problems are extremely common with ME/CFS. There could be many possible causes. In my personal experience, having an overnight sleep study done was really important. My sleep also improved when I started taking beta-blockers to deal with my heart rate issues. I’ve been able to eliminate all sleep meds, and no longer wake up in the middle of the night. Other patients have not had the same degree of positive response, so everything is individual. However, I think consultation with a sleep specialist is a good place to start.

  6. kathy d. says:

    I could not do a sleep study, can’t even go anywhere and definitely could not sleep anywhere but my own bed. Being somewhere else, even getting there, would give me so much stress I’d be totally wired. What I know is that I have to watch caffeine carefully and try not to take many medications. A lot of medications make me wired and hyper, even some that make other people drowsy — not me. True of painkillers, antihistamines, too. Also, I have to unwind for hours if I have something to do like write or do other things on the computer.
    But Friday I went to bed at 2 a.m. and was still up at 10 a.m., got no sleep. No reason for this that I knew of.

    • Jennie Spotila says:

      Some places offer in home sleep studies. They can’t do the video recording, but they can wire you up. It might be worth asking about. Consultation with a sleep specialist, even without a sleep study, might be worthwhile especially given your sleeplessness. I hope you can get some relief! Insomnia like that is crippling!

  7. kathy d. says:

    It sure is! But I couldn’t do the sleep study. Trying to sleep with wires on me would just be too hard to deal with, and I wouldn’t sleep at all. If anything is annoying at all in my environment, I can’t sleep. Once in the hospital for a broken bone and I didn’t sleep for 10 days, then slept for 24 hours, then no sleep for four days until I got home, then slept for nearly 2 days.
    The noise, people walking in and out, never being left alone by staff long enough to sleep, the
    stress; it was too much. My body is very sensitive to everything.
    New dog next door barks in the morning: I wake up. (Owner is sympathetic, is trying to retrain dog.) Kids in the hallway (whom I like) wake me up. I could go on and on.
    I occasionally wear earplugs, but I don’t want to be cut off in case of problems and deliveries, etc.

    • Jennie Spotila says:

      How awful! Do you tolerate sleep meds at all? I bet you’ve already tried herbal teas etc. I find they don’t really help me sleep, but at least they’re relaxing.

  8. Carol Ann says:

    Jennie, once again a wonderful post! Wonderful analogies 🙂 I am coming out of a 4 month set back. My own doing *sigh* I did it with full knowledge it could harm me. I live far away from my family-when I went there for a month, I ended up sick and in the hospital. The trip there was hard enough on me. So, my husband works seasonal, he had to get back home. I started crying, I miss them and had only 2 weeks with them. My family started crying (no man can fight that) ! So I stayed from Sept. to Nov. Big mistake I won’t repeat again. The interaction of family and old friends, noise, cleaning my living area, going off on jaunts when I should have been in bed, having fun and laughing too much, dealing with slight emergencies for my living arrangement. When I got home in Nov. 23rd, I was in bed for almost two months. I am just now coming out of it–members of my family have this illness too–and children. We are trying to get the Skype thing going. Wish us luck 🙂 If I could just get to see them couple times a week I would be more inclined to be far away. Not miss them so much. It looks like we may have to get a student in here to set up the Skype, I used to be good at applications–to foggy most of time even on good days to stay on task. Rather than do what I did to myself last year, the family and I made a decision to try to make this work 🙂 Sometimes it wears me out just trying to work around this illness. I take Ambien low dose, and higher dose of Melatonin for sleep. It seems to work, I also use LDN. I do from time to time record my movements with a baby video type monitor, and it looks like from time to time I am not resting well. But if I use none of those medications, it is not good. My daughter who has this illness, prefers not sleeping at night, we get revved up about 7pm. She sleeps in increments through the day, or whenever her body says sleep. I prefer night sleep, I prefer to get into REM as that is a healing sleep. If I care for myself and don’t do anything but putter around the house and throughout the day. It works for me. Very limiting though 🙁 It is what it is. It drives me ALMOST crazy the invasion if this illness, in so many different ways. Love this site. Thanks for all the shares. I apologize for the long comment. Will try to come more often. Say less. LOVEnHOPE, Carol Ann

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