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
One day, I slammed my finger in a heavy door — ouch. I reluctantly went to urgent care (after pretending I didn’t need to go for two days). They signed me in, took my vitals, the doctor would be right with me — the usual song and dance.
Then the doctor came in, and she wasn’t dancing at all. With a worried look on her face, she retook my blood pressure. Then she took it three ways – lying down, sitting up, and standing. I was like, What gives? I’m here for my finger.
She told me my blood pressure was dangerously low – 78/50, and she wanted me to go to the ER
I told her I was fine. I had been really tired lately, but my doctor had done blood tests and couldn’t find anything wrong with me. I had decided (because a mommy friend suggested it) that all the exhaustion was probably just perimenopause.
But she looked me in the eye and told me in no uncertain terms that this was not normal.
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!
*Disclaimer: The advice on Mom.com is not a substitute for consultation with a medical professional or treatment for a specific condition. You should not use this information to diagnose or treat a health problem without consulting a qualified professional. Please contact your health-care provider with questions and concerns.
