Is it possible to be this tired and still be standing?

I’ve often asked this question of myself over the years at parties, after a visit to my family, or basically anytime that I try to keep up with people who don’t live in constant pain. I’ve lived with JRA, juvenile rheumatoid arthritis, since age two, and can remember being at sleepover parties as a kid, bone tired, and wishing it was time to sleep. I was even booed once when, after my friend asked everyone at her sleepover,” What should we do next?” I said, “Sleep!” I also remember being in second grade and feeling validated when, one day, I heard my teacher tell us that kids more sleep than adults.

Even though I have over 44 years of living with extreme fatigue on a regular basis, I have to admit I still resent it a little, sometimes even more than my pain. But I also respect it because I know that if I push my limits, fatigue- wise, ironically my insomnia will get worse, and I’ll lose more than a few brain cells until I get more rest. Even worse, my usually happy demeanor will disappear and I’ll become the Grinch.

So, here’s what I’ve learned about handling my fatigue. Just like my pain tool-box, I’ve accumulated a few tricks along the way to alleviate my fatigue.

  • First and foremost, I give myself more hours in bed than most people would recommend. Sleep experts say that if you don’t fall asleep in 10 minutes to get up, but for me it can take that long to get relatively comfortable. So I cuddle up earlier than my five-year old niece some nights, and feel good about it. Luckily for me, I’m a ravenous reader, so I look forward to hopping into bed early most nights.
  • I use brain-wave entrainment music in the am when I wake up too early, and often in the afternoon, in order to encourage healing and relaxation.
  • When I feel myself dragging, I take a “nap.” I put the word nap in quotations because often I won’t actually sleep, but with the help of brainwave music I will get into a relaxed state.
  • I’ve learned to be honest with family and friends, maybe not about the level of fatigue that I deal with which is often beyond words, but about the need to bow out or retire early.
  • Routine, routine, is something I’ve learned helps fatigue a lot. Keeping to a regular schedule, one that I can handle, works wonders in preventing my fatigue from becoming a tsunami.
  • Learning to give in when it’s bad, and rest for a day or days, is something that over the years has saved me from severe flare-ups.
  • I usually cook a bunch of things at once when I have energy, so that I know I’ll have good, healthy, food to fuel me during more fatiguing days. I have a seal- a- meal, and a husband who loves to use it, so we have many yummy meals in the freezer.
  • I pay attention when I start dropping things, forgetting things, or begin to feel irritable. It’s usually a sign that I’m way too tired but not recognizing it.
  • Last, but not least, if I choose to burn the candle at both ends, I plan to take it easy for a few days after.

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