My favorite thing in the world is chocolate cake. In fact, let me tell you my ideal meal, just to set the scene. It’s 6:30 pm, I’m wearing slacks and a short-sleeved button-up, loafers for comfort and style. The restaurant is nice, but not too nice that I can’t get reservations. Maybe there are candles lit, maybe there’s live music. The tables are treated oak, upon which they serve me an ice cold Caesar salad, a handmade pasta dish, and a huge wedge of chocolate cake, followed by a glass of tawny port. Yes, I am an old lady at twenty-four, and I have what my grandmother affectionately calls “champagne taste on a beer budget.” Luckily for my wallet, and unluckily for me, I cannot eat a single thing served me in that fantasy.
“Luckily for my wallet, and unluckily for me, I cannot eat a single thing served to me in that fantasy.”
Now, I am working with my doctors to find the right balance of everything else before I have to try steroids again. This means I have to be strict about my sleep schedule. No more late nights writing (or binging Netflix). My blood levels are also being carefully monitored and my intake of supplements is adjusted regularly. Daily, I take: Magnesium (for sleep), Vitamin D, Vitamin C, Vitamin B-12, a B Complex, ProBiotic, protein powder, Calcium, more, and more. The more pressing, and irritating, restrictions are those put on my diet and exercise regimen.
I’m a chunky lady. I’ve always been a bit heavier, it’s part of the reason I didn’t realize something was wrong with my lungs. Can’t breathe? I must just be too fat. I like my body, sans illness, most of the time. I got heavier by eating. Food is great, food is one of my favorite things. As you might have guessed from my above ideal meal, I don’t like junk. Prepackaged foods gross me out. Chips out of a bag are almost definitely out of the question. My mother was a cook; we ate well on our trailer park budget.
After months of tests, trials, discussions, specialists, scans, my team of doctors have established “The Plan.” Practically, what this means is that I am not longer allowed to eat:
- Gluten (my favorite food group)
- Refined sugar
- Dairy (goat’s milk is ok)
- Soy (my second favorite food group)
Perhaps you, Dear Reader, like most people who see this list, are asking, “What can you eat?” That was my reaction as well. Or, you’re one of those busybodies who feel like they know better than my trained team of doctors (and I do mean a team, I see five separate specialists and one General Practitioner who acts as my Case Manager regularly). I’ve had people tell me that it’s a fake diet, a hippie scheme. If this is how you feel, shut your mouth, you’re not the one in paper gowns almost weekly.
It’s sometimes referred to as the Autoimmune Disease Diet. There are some ridiculous posts about “reversing” or “curing” autoimmune diseases with this diet, but that is impossible. What it will do though is manage my illness. Fewer flare-ups of symptoms, which means less joint pain, lung pain, inflammation, etc.
The other variable in this equation toward management is exercise. I used to be a fan of weight lifting, but one of my diseases (polymyositis) has left me feeling very weak. Eventually, I hope to get back to the weights I used to be able to lift, but I’m taking it slow. I’m starting with a lot of yoga. There’s a place by me that teaches Yin Yoga classes on Sundays. This is particularly valuable to me because Yin Yoga is slower, focused on increasing strength and flexibility by holding poses for long periods of time.
At home, I’m doing “Yoga with Adriene,” and you should too. She tells me to “find what feels good,” which is hard for me to do recently. She’s calming and careful and funny. I’m grateful that she’s leading me via YouTube back to strength.
Already, I’ve lost some weight. Losing weight isn’t on my fun list of things to do. There are the remarks from people, and I have to decide whether to just say “thanks for noticing,” or to explain that my weight loss is a symptom of my general unhappiness and unwellness. I normally go with the former.
Recently, a lot of people have said things to me like, “when you’re better” or “get well soon.” Sweet sentiments, but eventually frustrating. I will never be better or well; this is my lifelong illness. How I’m feeling though, that’s changing. Slowly, I’m starting to feel less hopeless. It’s hard, exhausting work, but it’s worth it to be able to do the things I want to do. Some days it’s too hard. Some days the most I can do is get dressed, get to work, and get home. That has to be ok too.
If you’re just starting on your fitness journey, or you’re learning to live with an illness, too, I’d love to hear from you. It doesn’t have to be so lonely in chronic illness land.