WWAC Warriors: Chronic Illness, Management, and Relief

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.”

A few months ago, I wrote about being sick. I have an autoimmune disease that is causing the slow breakdown of my lungs and muscles. Recently, I was put on high-dosage steroids in an attempt to kill my immune system and slow my body’s self-destruction. My reaction to Prednisone was so violent that I had to be weaned off of it. I became irrationally angry, confused dreams with reality, bloated to the point of not fitting into any clothing, and was in extreme joint pain. Yet, I was lucky. There are worse side effects.

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
  • Citrus
  • Eggs
  • Dairy (goat’s milk is ok)
  • Peanuts
  • Soy (my second favorite food group)
  • Chocolate
  • Alcohol
  • Caffeine

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.

Al Rosenberg

Al Rosenberg

Gay weirdo. Talk to them about tiny games, big books, trash, and all things illness.

6 thoughts on “WWAC Warriors: Chronic Illness, Management, and Relief

  1. Both times I’ve had long-term back problems (the most recent I’m still fighting off) yoga’s been very beneficial. I get frustrated with a lot of the culture around it and sometimes feel bad about the appropriative aspect of it, but I can’t argue with the results at all.

  2. May I just say: that. fucking. sucks.
    I am no longer physically chronically ill. When I was it was the– well, you know. There aren’t really any words to describe it. I couldn’t walk, I couldn’t reliably lift a spoon to my mouth (the pain was so bad), some days I couldn’t wipe my own ass. I did not think I would ever be able to do those things again. I have been very, very lucky, and I can. Getting help is hard when people have all sorts of dismissive crap to throw at you. It sounds like you have doctors who actually want to help, which is a huge boon. If they start giving up on you, they are WRONG, and there will be another doctor who will actually help. There is always another doctor. Always keep looking.
    Yoga saved my life. It was the only pain management tool that worked. It was so, so hard to do the poses but I am so glad I did.
    Kat, I bet there is yoga that won’t hurt you! At the very least there are probably some poses that you could partially do. Just make sure you don’t do anything that hurts, yoga shouldn’t hurt.
    If you’re reading this and you are in pain, I just want you to know I feel you and I love you and you can get through today. Just take it slow, be incredibly kind to yourself, and don’t give up looking for relief. (But do, do take breaks.)

  3. Prednisone, my nemesis! It pushed me into a manic episode, something I’d never had before, so I’m no longer on it, but it was a trip. It’s nice to see that yoga is working for you! It’s one of those things that people constantly recommend to me but I can’t really do due to joint problems, but maybe there’s a video out there for me somewhere.

    1. Kat, I too have joint issues. My yoga is EXTREMELY modified for my body. Sometimes my body is so stiff and painful I do “Chair Yoga,” which still has its benefits. I wish you luck in finding something that works for you.

      Yes…prednisone is the worst. I don’t really know anyone who hasn’t had problem while on it.

      1. Chair yoga hmmm! I will have to check that out! I do a lot of stretches from PT, but I am always looking for more stuff to help (currently on a foam roller kick).

  4. Thanks for sharing. I was recently diagnosed with fibromyalgia. I have that same feeling when people tell me to feel better. There is no cure; this is my new normal. I’m tired all the time and also can’t do all I want to do. But I have good days and this illness has brought new focus to my life. I’m trying to spend time on the things I truly want.

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