When I first heard the term “chronic fatigue syndrome,” I thought it sounded like a fancy way to say, “I’m sick and tired.” I cringe to admit this now, but in my mind, I insensitively labeled it a “lazy person’s disease.”
Until I got it myself
I was not fine
What I was dealing with was definitely NOT perimenopause</a>; she would only let me leave the urgent care if I promised to follow up with a cardiologist.
Well, I did follow up — not only with a cardiologist, but with a long list of doctors for a long list of mystery symptoms — all of which I’d had for a while. But my primary care physician couldn’t explain them.
One of those specialist doctors finally diagnosed me with CFS (chronic fatigue syndrome). It’s a vaguely understood, understudied autoimmune disorder in which long-term, low-level stress primes the body to overreact to a virus. And the immune system ultimately attacks itself as a result.
Another term for this syndrome is myalgic encephalomyelitis (ME)
I immediately googled how to pronounce “myalgic encephalomyelitis” because to me it sounded much more real and reasonable than “chronic fatigue.”
My symptoms included:
- Fatigue (duh)
- Dizziness
- Post-exertional malaise (I would take a 30-minute walk and feel like I’d eaten a huge Thanksgiving meal)
- Low blood pressure
- Heart palpitations/tachycardia
- Irritable bowel (no fun)
- Burning mouth syndrome (I still don’t understand this one!)
- Headaches
- Brain fog
- Joint pain
I was told that there’s no cure for CFS/ME
For many people, it can last for decades; the only option is to learn how to manage life with these symptoms.
For two years, I would stand up in the middle of the day, get dizzy, and have to sit down again. I would wake up after sleeping for nine or ten hours and still feel exhausted. I would get out of bed to take my daughter to school, go back to bed, wake up for pickup, and struggle to stay awake until her bedtime.
I joined a support group with people suffering from CFS for 20 or more years. They discussed disability payments and managing life without being able to work.
I was sitting there thinking: "No, I can’t do this. I’m a full-time mom!"
I took a deep dive into the limitations of western medicine, and then I tried everything else: I completely cut sugar from my diet, took an insanely expensive cocktail of supplements and tinctures, went to a fancy doctor who didn’t take my insurance, upped my exercise, cut out exercise, did restorative yoga, EMDR, DNRS…if you’ve never heard of it, I probably tried it.
And then finally, I was led to take a deep look at what had been causing me to feel the low-level stress that led me to get sick in the first place.
And I faced it
I’m happy to say that I feel great today, and I did not end up with CFS for the rest of my life. But I know now that it is a very, very real disease. I will never again assume that a syndrome or disease isn’t legitimate just because modern medicine doesn’t yet understand it.
I will never again take my body for granted and let myself get run down by that kind of stress — even mommy needs a break sometimes!
