I’ve never written about my chronic fatigue before today. But I know anyone who has it knows that working with chronic fatigue is a constant balancing act. And on some days trying to find the balance between what you can and can’t control can leave you feeling even more tired than the condition itself.
It’s hard enough on days when you’re at home and at least have control over your environment. But what about those days when you need to head into the office — or even if you’re working remote and need to stay on zoom much of the day? And you struggle not to show any of this to your coworkers.
How working with chronic fatigue feels
Chronic Fatigue Syndrome (CFS) is not the same for everyone. I have a friend who barely was able to care for herself on many days over many years. She does have better days. But not enough better days to hold a steady job. She recently found part-time work helping her neighbor’s business. Luckily, her neighbor knows and understands about those less better days.
Over the years, I’ve been luckier. I mostly just needed to remember not to plan too many full days in a row. And to be prepared in case I woke up unable to handle all I had planned for the day. Sometimes you just don’t know until the next day.
Everything changed a few years ago. Now I can’t even consider working in an office or attending meetings outside my home. Muscle issues. Fatigue. Brain fog. All part of my condition.
And yet, I feel grateful that I am able to maintain this website and still “speak” to you through the magic of the internet. Although not as often or as much as I once did. Still, this allows me a connection with the world outside and an outlet for my need to write and help others.
Common chronic fatigue symptoms
[Courtesy the Mayo Clinic website.]
- Problems with memory or concentration.
- Sore throat.
- Enlarged lymph nodes in your neck or armpits.
- Unexplained muscle or joint pain.
- Dizziness that worsens with moving from lying down or sitting to standing.
- Unrefreshing sleep.
- Extreme exhaustion after physical or mental exercise
Doctor says “rest more” … not so easy!
My own symptoms have been coming on for years. But somehow I never tested positive for Epstein-Barr or anything that explained how I was feeling. And so previous doctors just dismissed it as stress or working too hard. Luckily, I now have a doctor who listens and puts her creative brain to work.
Well, it’s true that stress can be a big factor in the onset of full-blown chronic fatigue. But in my case I also have something called “reactivated Epstein-Barr” (non-contagious). And that seems to have added to the severity of my symptoms.
I’m working on trying to regain more of my old self, while still doing as much as I can … plus learning to accept that this is me now. While I still try to improve my range of abilities, there is great freedom in acceptance — and a sense of peace.
Seeing and honoring all we still are, while not letting what we aren’t stop us from living is a great gift. I still work on it.
About that get more rest prescription
My doctor tells me to rest more. And I do try. But part of the balancing act for me is finding ways to still engage my mind and spirit as much as possible. And adding joy wherever I can. Somehow even though it feels like I’m not doing much anyway, doing nothing for more than a short period of time is hard.
So yes, I rest. Some meditation. Relaxation with music. Some gentle stretching & movement to keep from rusting (Tin Woodman in Wizard of Oz reference.) And puzzles — for whatever reason they help ease my often overactive brain.
Above all it’s about reducing stress. And that involves a lot of personal inside work. In a funny way that’s been the greatest “gift” of my chronic fatigue. And even resulted in better relationships with people I know — and myself.
When I was able to run around and stay busy pretty much all day, a lot got pushed aside. So the work I do to slow down and reframe the world around me has been an interesting and worthwhile journey in and of itself.
Working through the chronic fatigue
I know I just talked a lot about myself. And I hope that for at least one or two of you something resonated that helps you know you’re not alone. And maybe offers hope.
But I also know some of you who have chronic fatigue need to work in an office or full days at home, And my heart goes out to you. Not only for the at-times-paralyzing exhaustion you feel, but because so many people just don’t get it.
You see, if you have chronic fatigue you can still look healthy. And people forget. Or think you’re shirking. I actually had a grocery delivery person refuse to come up to my apartment during the early days of COVID because he said I don’t sound sick. And he even said if he comes up and sees I’m not sick he’ll be pissed. No kidding.
I was dumbstruck. But of course I needed my delivery, so did my best to show understanding and convince him to come up. Which he thankfully did.
And along came COVID
As awful as COVID has been and still is, for many people the symptoms don’t end when the initial stages pass. Long COVID — after-effects that last sometimes for months and months and beyond — has entered into the mainstream of awareness. And it’s a lot like chronic fatigue.
So one hope (that I share) is that researchers will use this horrible after-effect to learn more about chronic fatigue and find effective treatments for both. As of now, there isn’t anything that can cure either for sure. At least not in the mainstream of medical knowledge
Feel free to share your thoughts or stories about working with chronic fatigue in the comment section below. Also please let us know any tips you have for others who are dealing with this,
Some health & stress tips