When You Make Summer Plans, and Your Autoimmune Disease Laughs

I am a high school secretary, so I am blessed with six weeks off every summer. I had great plans for this summer. I was going to grow my own vegetables, organize the entire house, write and hike.

To paraphrase the Yiddish proverb, “Man plans, your autoimmune disease laughs.”

My summer days go more like this:

Try to wake up at a decent hour (before 10 a.m.), but find it’s impossible since spasms and cramps prevented me from falling asleep until after 3 a.m.

Force myself out of bed, wincing with pain as I set my feet down and straighten my legs.

Think about making a healthy breakfast, but feel too exhausted for that. Opt instead for a protein shake with coffee thrown in. Sit down in front of seven pills. Take the first six, but pause before the seventh, a painkiller. Do I really want to take this now? Am I jumping the gun? Maybe the pain won’t be so bad this morning. Plus, the doctor only gives me a limited number of these, and I tend to hoard them for the day when I really need them. (Which, in reality, and likely by anyone else’s standards, is every day.) Decide to take it, because I need to get some chores done today.

Visit the bathroom, wash up, dress. Gather laundry to wash (because there’s always laundry).

Now the first hiccup arrives. I’m so exhausted, my legs are shaking. But I spend a while arguing with myself. “Just do it!” I yell, sounding like a wobbly Nike ad. “You’re fine. You had coffee and even a pain pill. Don’t be lazy, just do it!”

In the end, I make a deal with myself: start the laundry and empty the dishwasher (which was filled last night by my angelic daughter), and then you can rest. Exhausted, I flop onto the couch, inwardly berating myself the whole time. After a little while, I hoist myself up and keep going.

Let dog out, let dog in. Gaze longingly at the unruly garden I planted so hopefully two months ago. I would love to go out and weed, but it’s 90 degrees out there and that kind of heat would do me in. I just watch as the groundhogs and birds and weeds help themselves to my veggies.

Move laundry to dryer. It’s only one load, why are my arms shaking?

Try to straighten the living room. Why is there so much stuff on the floor, and why am I the only one who sees it? Spinal stenosis makes it hurt so bad to bend over, but I do anyway, picking up napkins, socks and shoes. Growing up, there was never anything on the floor (unless I left it there). Even with a bad back and a full time job, my mom always managed to make sure our house was neat.

The dryer insistently buzzes to tell me the clothes are dry. It takes me three restarts until I feel like I can tackle folding. Putting the laundry away will have to wait until tomorrow; I just don’t have it in me.

I decide to sit on the couch and try to write a little bit. I open a document and stare at the blinking cursor. Suddenly, there is nothing in my head. Didn’t I just have a great idea for an article? Where did it go? Sucked up by the black hole that is brain fog, again. I end up on Facebook, liking the statuses of my friends who are hiking or rafting or just making memories with their families. My kids are all grown, but I pray their memories of me are more than just “mommy is resting.”

After a little while, my vision is too blurry and my finger joints ache, so I put down my iPad and get a drink. By now, I am so disgusted with myself, my eyes burn with unshed tears. Time is ticking away, and soon I will be back at work, exhausting myself simply by doing my job and then unable to do anything else. All of this free time — me time — will be gone and I will have little to show for it. Ruined zucchini, rotten tomatoes. Baskets of folded clothes and piles of books and magazines, but nothing “in its place.” No articles, unless I submit this one.

And hiking? Well, I walked through the grocery store a couple of times, leaning heavily on the cart and my daughter’s help. Does that count?

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