The Ugly Truth About Life with Chronic Fatigue

I have three sources of energy. Sleep is not one of them. I pretend it is by monitoring all aspects ofCarie Sherman my slumber, trying different bedtimes and wake times and room temperatures and routines, diets and sleep apnea treatments and light therapies and doctors, but here’s the sum of what I’ve learned: It doesn’t matter. I’m still chronically tired.

I feel rested in three hour increments. It doesn’t matter what I do during those three hours: Somewhere between 150 to 210 minutes after my last bout of sleep, I’m exhausted.

My Sources of Energy
• Source 1: Adrenaline. Lately my adrenaline rushes come as a reactionary response to negative stimuli. Usually a deadline—as simple as an article that’s due or the refrigerator is devoid of anything fresh. My favorite (ha) is the Shame Deadline. Maybe you’ve experienced it, too: the laundry in the washer is beginning to stink; your child cries when you stuff her feet in her too small athletic shoes; you haven’t left the house in 3.5 days.

• Source 2: Sugar. I’m in a constant struggle of managing blood sugar and managing a stomach that hates most food that enters it (thanks, IBS). Veggies or protein; sugar or fat, it matters not: I can feel hungry and crash, I can feel satiated and crash, I can eat greens and crash, I can eat dairy or chicken breasts or tofu or legumes and crash; I can eat Reeses Peanut Butter cups or the gluten free almond donut served at my favorite coffee shop and crash. Can you guess which one gives me the most energy, fast? I’m fully aware that eating sugar and carbs will spike my blood sugar. But I’m crashing no matter what I eat. Might as well ride a momentary high.

• Source 3: Caffeine. Oh, how I love thee. Without you, I wouldn’t get my daughter’s lunch ready or get her dressed on time or ever comb her hair. I never leave my house except for the search for your glorious head rush. You hold my eyes open, as if little toothpicks have been jammed between my eyelids. I might as well be asleep, for all the cognitive ability I have in those shaky moments where you let me forgo a nap, but you get me through the day. Thank you.

I know so many of you will argue—correctly—that I’ll feel poorly as long as I ride these highs. I’m sure you’re right. But unless you’ve been forced to live in three hour increments, and unless you go to the doctor every three months to make sure your organs haven’t decided to maim you, and unless you’re going to take over my life long enough for me to completely wean my body off the only things that keep me going, then this is how life shall be for me. And until this mess is resolved, you can take my caffeine when you pry it from my cold dead hands.

Fatigue! Questions to Ask Your Primary Care Physician

By Carie Sherman

Carie ShermanWhen your adventures include autoimmune disease, fatigue is your constant companion. And by “fatigue,” I’m not just talking sleepy.

You know the commercial for COPD where the elephant sits on the woman’s chest? That’s what fatigue feels like for the lupus patient. Only the weight of the elephant isn’t just restricting movement and breathing–it’s also restricting your ability to think. Every step you take become scripted events: You literally must think through each action you take once your eyes open.

I must have sounded like Rain Man to my many docs, chirping “fatigue, fatigue!” at each appointment. My persistence paid off: Eventually, they helped me discover other issues impacting my health. And I’m thrilled to report it’s been months since I found milk in the pantry or woke up to honking at a stoplight. (I promise, I rarely drove after that incident!)

 Here are common conditions that impact my fatigue and could warrant a conversation with your physician.

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