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Woman with hands on her head with a gauge reading on the low end on her face.

If Only There Was a Fatigue-O-Meter

I’ve been wishing for a fatigue-o-meter. It would be a device that you touch and magically measures and reports on your level of fatigue. In my mind, it looks like a large brass round clock or barometer (or alethiometer—extra points to people who get the reference!).

Measuring chronic RA fatigue

When I hold the fatigue-o-meter, the hands would twirl then settle on my current level of fatigue. I imagine that the points on the dial would change as I discover (mine for?) new low levels of energy. It would be large and heavy. Perhaps I wouldn’t be able to lift it well. It would be kind of awkward and not practically portable. But it would always tell me the truth.

Fatigue comes with self-doubt

I think other people with fatigue struggle with this problem. We start to doubt ourselves. Am I really tired? Am I more tired than I was last week? A month ago? A year ago? A decade ago? How am I compared to the other day? Am I catching up? Am I falling behind?

It doesn’t matter if the answers are bad, I just want to know the truth. I feel worse than years ago – is that true? Sometimes I worry that my life was charged on one battery and my light is flashing. I’m getting low! Where do I find the charger?

As mean as it may sound, the fatigue-o-meter would also confirm what I believe in my heart: that I truly am the most tired person in my vicinity—nearly always. When I hear someone complaining about being tired, I could test them with the fatigue-o-meter then hit them upside the head with it when their results are undetectable and mine are off the charts. Really, I would never condone violence. (Or would I? I’m too tired to say for sure.)

A state of chronic fatigue

When my doctor recently asked how I felt when I wake up in the morning, I cackled. I wake up tired! Seriously, how does a person wake up tired? How is that actually physically possible? Does that mean I am literally a zombie? Should I try out for a zombie show? (How is their health care? Do zombies get a good health plan?)

The energy crisis

I wish I could say I am in an energy deficit. It’s more like a crisis. I dream about sleep. Seriously, I am sleeping and dreaming that I am getting enough sleep. It’s just not physically possible. Perhaps it’s my rheumatoid arthritis (I’m sure a lot of it is) and I’m sure there’s some sleep apnea mixed in for bonus points. But I feel so drained that I worry my imagined fatigue-o-meter would just sigh at me and then throw itself out the window in despair (don’t worry, it’s just a patio outside – we’re on the first floor, so it will only get a little bruised).

If I could talk to my younger self, I would tell me to get more rest. But there was so much fun to be had! Late night concerts! Giggling slumber parties with friends! Travel and jet lag! Now I changed my mind—do all those things while you have the energy.

Pretending to have energy

Now I just try to fake it as much as possible. I pretend I have energy like imagination can influence reality. I put the fatigue-o-meter in a drawer and lose the instructions in the bottom of a cluttered closet. Who needs that thing anyway! It just gets me down. Tells me like it is. Never mind. Better to just do as much (or more than) I can manage on my energy. Too much life to be living! Who cares about fatigue anyway?!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Franki King moderator
    5 months ago

    I love your idea for a way to measure how tired we actually are. That would be insanely helpful because then I could see if any of the things I do to combat fatigue are actually working. Sometimes I feel like no matter what I do I will never be able to fight it!

  • Kelly Mack moderator author
    2 months ago

    Yes! Wouldn’t it be so helpful to have a warning! Or an indicator about what we do that helps or doesn’t help? Thanks for your comment, Franki. Best, Kelly (RheumatoidArthritis.net Team)

  • NancyR
    5 months ago

    I’m lucky to be retired and live alone so I can do this, but I no longer fight the fatigue. If I need to sleep, I go to bed. It might turn into a four or five hour nap, but it does help me. Before I was diagnosed I spent four days straight in bed, thinking I just had the flu. Now I know what’s going on so I give in. So what if in a day I spent more hours in bed than up and about. I realize so many people don’t have this option because of working and/or raising a family and I’m truly grateful that I can do this. Also, when I’m having a good day I try to clean my house, do the laundry, etc. because there’s no telling when I’ll be able to do it again. When friends or family visit they’re used to me telling them that my house is a mess because I had “The Fatigue”. I get a better night’s sleep if I read in bed until I get sleepy. I stay off the computer for at least several hours before I want to go to bed, and I take a long, hot shower before going to bed because I find that also relaxes me. You have to do whatever you can, whenever you can and hope for the best.

  • Kelly Mack moderator author
    5 months ago

    Hi NancyR, thanks so much for sharing. I agree that when I have the time (weekends or on vacation, as I work) taking naps and getting extra rest does help me to feel better. Also agree that its good to do things when we feel well enough! Thanks so much for your support and understanding. Hope you are hanging in there. Take care. Best, Kelly (RheumatoidArthritis.net Team)

  • brendae
    5 months ago

    Have been dealing with RA for 27 years. (I am 54) Have good days and bad days. Fatigue is an issue many days, but I am a glass half full person and use optimism and humor to get me through the day. I find that by doing some form of light exercise each day helps with the fatigue even though I know that sounds odd. A nice walk or gentle stretching yoga does help me. Just my input. 🙂

  • Lawrence 'rick' Phillips moderator
    5 months ago

    I agree with you Brendae. I always feel better when I exercise. My exercise of choice is bicycle riding. What is yours?

  • Kelly Mack moderator author
    5 months ago

    Hi brendae and Rick, I totally agree–exercise really helps. I find the most exercise, the better my fatigue (as long as I am not aggravating my joints). Thanks for your comments! Best, Kelly (RheumatoidArthritis.net Team)

  • brendae
    5 months ago

    Hi “rick” I like walking and the elliptical. I also ride my bicycle at times as well.

  • swoocher
    5 months ago

    I was diagnosed with RA 7 years ago, and with fibromyalgia 4 years ago. I just turned 72. My entire life has changed due to pain and fatigue. I had to retire. I was a family therapist, and very active in my community. Now it is all I can to get through the day. I don’t sleep well and almost never participate in evening activities anymore. It can be very isolating. You have to fight depression all the time.

  • Introvert
    5 months ago

    Hi Swoocher,
    I’m right there with you. I’m a retired expressive arts therapist, age 68. I think maybe the hardest part of all this fatigue is feeling useless after a lifetime of helping others.
    I also can no longer play my musical instruments or make art with arthritic hands. So very tired of being tired all the time; something the people in my life just don’t understand.

  • Susie Que
    5 months ago

    I’ve had RA for six very long years. It feels like a obstacle course you run every day. I wake up and haven’t slept 4 hours. I don’t think I could do a fatigue meter, I have no perseverance. When I really need energy I often just don’t have any. I used to be able to work upholstering all day long go home cook, clean, laundry and take care of 2 kids.
    It’s very hard to wrap your mind around those days are gone forever.

  • Bets
    5 months ago

    I agree, it is difficult to wrap my head around RA and how much my life has changed. Feeling misunderstood, there is so much I want to do and my body just won’t cooperate. Fatigue is consuming and so discouraging. Thank you everyone for sharing, it is very helpful and I feel a little less alone 🙂

  • Kelly Mack moderator author
    5 months ago

    Thanks Susie Que and Bcsmartt, really appreciate your comments. For me, fatigue is the most difficult aspect of RA–especially because there doesn’t seem to be any treatment. It takes a huge adjustment to realize that we have to do less and conserve energy. Hang in there. We understand. Best, Kelly (RheumatoidArthritis.net Team)

  • AndyS
    5 months ago

    Great article, My BP monitor has become my fatigue monitor; if I can’t be bothered to check my blood pressure, I’m fatigued! I did think of fitting myself with solar panels, but; (1) I live in England, and (2) I’m too tired to go for a walk.

  • Kelly Mack moderator author
    5 months ago

    Thanks AndyS! Ha! I like the solar panels idea, but may need to move to a sunnier place myself! The winter gets so gray here that I would never be able to do anything. Take care! Best, Kelly (RheumatoidArthritis.net Team)

  • sondecicada
    5 months ago

    Fatigue . . . is the most recent symptom of my developing nightmarish RA. Getting out of bed has become a long a very difficult process. Absolutely every single action following getting out of bed is ridiculously difficult. The most simple acts like taking off my PJs, getting dressed, putting on my shoes, walking to the bathroom and brushing my teeth leaves me in a state of complete exhaustion. If someone is watching me in the morning . . . they would probably assume I am 150 years old. I wake up already exhausted, I am exhausted all day and all night. I am unable to perform about 95% of the ‘normal’ easy tasks I once had no problems with.
    As usual . . . RA fatigue is invisible. If you take a good look at me, I don’t look weak or clumsy or fatigued.

  • David Advent moderator
    5 months ago

    @sondecicada, I feel your pain. The fatigue in the morning is absolutely dreadful; like you say, even the simplest tasks are difficult. Please know that this community is here to support you! -David (RheumatoidArthritis.net Team Member)

  • Lawrence 'rick' Phillips moderator
    5 months ago

    I use my recliner as my fatigue – o – meter. it is 100% effective, 100% predictive and 100% guaranteed to let Sheryl know I have fatigue. Me, not so much. 🙂

  • Kelly Mack moderator author
    5 months ago

    Nice! 🙂 Best, Kelly (RheumatoidArthritis.net Team)

  • Carla Kienast
    5 months ago

    Hi Lene: In discussion with other advocates, we’ve often lamented there’s not a “fatigue scale” like there is for pain because fatigue is such a major factor in RA. I love your “fatigue-o-meter” idea! This would definitely solve the issue.

  • Kelly Mack moderator author
    5 months ago

    Thanks Carla! 🙂 Best, Kelly (RheumatoidArthritis.net Team)

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