When you keep a food diary, you log everything—and I mean everything—down to the half-and-half in your coffee and the raisins in your oatmeal. It’s an effort.
Keeping a food diary is new to me. When I see my nutritionist next week, she’ll analyze it and tell me if I’m filling in the nutritional gaps in my diet. But I’m not keeping the diary to count calories, exactly—I’m doing it because this is what it takes to live with lupus and fibromyalgia. This is just the latest addition to my health management toolbox, which also includes supplements and exercise.
Systemic lupus erythematosus, usually just called lupus, is an autoimmune disease that affects the kidneys, blood cells, brain, heart, and lungs. Essentially, a healthy immune system creates special cells, called antibodies, that attack foreign objects like bacteria or viruses. With an autoimmune disease, the immune system creates antibodies to the body’s own healthy tissues. My body is at war with itself on a cellular level.
As if that weren’t enough, I also suffer from fibromyalgia, a disorder characterized by widespread musculoskeletal pain on top of fatigue, sleep, memory and mood issues.
Between the two diseases, I live with chronic pain, joint stiffness, fatigue, brain fog, rashes, and fevers. Sometimes, due to the lupus, the lining around my lungs becomes inflamed and it hurts to breathe deeply. It feels like having the flu, minus the sneezing and the understanding that it will be gone whenever the flare-up is over.
There is no cure for lupus or fibromyalgia. In fact, the FDA has approved only one lupus-specific treatment in the last 50 years, and it didn’t work for me.
Like most people with autoimmune diseases, I’ve had symptoms most of my life—things like strange infections that didn’t go away with treatment, unexplained inflammation, and even an allergy to sunlight. When I had digestive problems, I saw a gastroenterologist. When I had allergy problems, I saw an allergist. When I had gynecological problems, I saw a gynecologist. It wasn’t until 2011, when I was 41, that I received a diagnosis of lupus. By that point, I’d gotten so sick I couldn’t teach, drive, or—eventually—stand on my own.
Medication only goes so far in treating autoimmune diseases, even when you find the right one. It’s only one tool. Somewhere in my head lives an irrational girl who wishes for a magic pill to fix me. Rationally, I know it doesn’t exist. Instead, I have to manage the symptoms that stay with me if I want any quality of life.
That’s where my health management toolbox enters into the picture.
With lupus, my overactive immune system has made proper eating hard. My stomach doesn’t empty normally. My intestines don’t absorb nutrients or push food along well. Too much fiber or fat and my digestive system goes on strike, leaving me unable to eat. Food allergies only further complicate the issue.
For this reason, keeping a food diary is so key. My nutritionist deals with my specific situation; she is aware of my health history, symptoms, medications, risks, preferences, and goals. They help me add calories and nutrients to my diet, and I also take a multivitamin to fill in some of the gaps. And, like many people with lupus, I am vitamin D deficient, so I take a high weekly dose of vitamin D.
Like diet and supplementation, exercise and movement is also an important tool in my wellness box. Actually, it’s as much a part of my morning as opening my eyes.
Movement is the only way to break through the immobilizing morning pain and stiffness of both lupus and fibromyalgia. Many mornings, my first thought is, I can’t move. It feels like someone has tied knots around all my joints and then pulled the string until everything is locked in place.
When I was diagnosed with fibromyalgia, my doctor—through my tears—suggested that I try tai chi to help with pain management. In fact, the New England Journal of Medicine published an article about a study in which people with fibromyalgia experienced less pain if they did tai chi, a “low and slow” martial art.
So I tried the tai chi out of desperation. After a few days, my pain decreased a little. After a couple weeks, I could push through my morning pain and not wince with every step. When I didn’t do it, every move hurt. Things like getting downstairs to make my morning coffee once again became agony and the tai chi helped that pain recede.
On hard days, every little bit of effort counts as progress. I take a few bites of oatmeal and wash my morning medications down with water.
The burden of keeping a food diary and tracking my exercise and all the little things I do each day to keep functioning is infinitely lighter than the burden of watching my life slip by without fighting for it. Only a few years ago, just getting through the day was a chore. If I could shower and get dressed without having to immediately go back to bed, it was a victory.
To make the process better, I use a pretty planner and colored pens to track my wellness progression. It’s how I manage a disease that wants to manage me.
When I practice these acts of self-care—like when I eat well, take supplements, and move through my tai chi practice—my pain ebbs away. In fact, I’m not just losing pain: I’m finding myself.
Tai chi and yoga both demand attention to breath, a basic and necessary action for life. With each breath, I remember: I am more than pain. I imagine that I can feel my chi—my energy—pulsing through my body. With every food journal entry and everything I do to take care of myself, my thoughts become clearer, and I can truly focus on things that matter outside of myself.