A Day In The Life Of The Autoimmune 

When I wake up – after a night just like all the others: fitful and short – I’m already in pain. The pain is mostly in my shoulders, right wrist, and right knee, so I know right away it’s an arthritic flare up. Could be caused by the weather outside, or the way I slept, or even something I ate the day before.

I wake up when my daughter does, and find the energy to drag myself out of bed long enough to get her breakfast, change her diaper, and turn on Netflix. The guilt settles in my chest as I click on Little Einsteins and think about how many other mornings this week have started this way.

Then it’s back to bed with the first of many cups of coffee, to count my spoons. I need one for work later: physical work, as these days I’m primarily a housekeeper and yoga instructor. I add an extra spoon for the teaching. Interacting with people always takes a little more energy than working on my own does. At the thought, I pull closed the curtains around my bed so I can soak up a few more minutes of introvert time, meditate, and fuel up for the day. 

Out comes the planner: my brain on paper. I can’t trust the foggy mess inside my head, so everything goes in a little square with color-coded pencils and perfectly coordinated shapes to remind me of things most people can remember on their own. Further down the week, I have yet another doctor appointment. I’m already tired just thinking about it.

Breakfast isn’t happening today. I have a lot of food in my house, but almost nothing that my body will tolerate. I opt for a granola bar and some juice. My hair goes into a ponytail, against the wishes of my tension headache. My body hurts. It always hurts. It’s the predictable result of ignorantly poisoning myself almost nonstop for 23 years. I take medicine.

As I teach, I feel the pain migrating from my shoulders to my elbows, and settling in my hips. I nurse my joints, and coach from my mat, rather than demonstrating every pose. My regular students understand.

After work I take a power nap. Another necessity, if I’m going to make it through the rest of the day. I awake in a state of deep derealization. Ten full minutes of mindfulness later, the fog in my brain finally starts to lift enough for me to feel like I’m in the real world again. When I touch things, I can feel them. My boyfriend’s voice sounds like himself in my ears again. I make coffee.

The phone rings, a number I don’t recognize, and I send it to voicemail, to be dealt with when I have more spoons. I pray it isn’t another friend that I’ve disappointed by disappearing in the last couple of weeks.

Dinner is the biggest – and for me, most important – meal of the day. I summon the energy from my nap to pour as many nutrients as possible into a single meal. I studiously check the ingredients list of every single item before adding it to the pan. If all goes well, the meal will be nourishing. If things don’t go so well, I will overlook a crucial ingredient or discover a new intolerance and spend the rest of the evening downing digestive enzymes. 

Worst case scenario, I eat something something new that looks like it’s allergen-free but isn’t. That’s a mistake I could be paying for for days on end.

When I put my daughter to bed, we do a little bit of light yoga. I feel my joints crack and creak as I do the gentle stretches. By the end of our five minute routine, I barely have enough energy left to bathe myself and fall into bed. It’s 7:30 PM, and I can’t believe how late it feels. 

I take more medicine. A multivitamin the size of a horse pill to compensate for everything I cannot eat. SSRIs to keep the fog at bay and keep me moving. Allergy medication so I can breathe.

I will doze off immediately out of sheer exhaustion, but the sleep won’t last long before it becomes light and fitful again, full of pain and, frequently, sleep paralysis. It’s all part of the territory.

This is an average day, and, realistically, not a bad one. I will likely discover, somewhere down the road, that my new lotion has wheat byproducts in it and that’s why I’m in pain today. Or maybe a few nights ago we used a spice from the cabinet that had been contaminated. Maybe my daughter, immediately after her glutenous snack, stuck her fingers in my drink while I was out of the room. Maybe the waitress at that restaurant lied to me about the allergen content of my meal.

I feel guilty all the time. Guilty for flaking out on my friends when they want to see me after months of silence. Guilty about snapping at my loved ones, or panicking over something they said that was meant to be benign. Guilty about letting my kid watch so much TV, and for not taking her out of the house more frequently.

It is what it is. If I’m completely honest with myself, I’m happy. Truly, deeply happy. I am surrounded by people I love and who love me. My life is overflowing with good things. In my heart and spirit I am not miserable. 

Some days though, I wish my body would get the memo.


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