I hate jigsaw puzzles. I have neither the attention span nor the inclination to make sense of their colorful chaos. But my husband loves them and last weekend was his birthday. So we sat down together to complete a puzzle.
Thirty seconds after dumping the box’s contents onto the table, I panicked. I ran to the kitchen to unload the dishwasher. And I hate unloading the dishwasher.
Up for the challenge of both puzzle and me, my husband asked me to sit back down. He gave me a strategy. Because whether I liked it or not, I was helping him with this puzzle.
Chronic Illness is an Ugly, Confusing Puzzle
A chronic illness like lupus forces you to sit down at the table. You scramble. You panic. It’s too big. It’s too hard. But if you want any life at all, you’re forced to confront the giant mess before you. 4
As my husband explained in his puzzle lecture, you start with what’s easy: The corner pieces give you structure.
For my illness, these were my doctors—primary care, rheumatologist, neurologist, and my therapist.
Once the corners were in place, I had to fill in the rest of the structure: the medications; the lifestyle changes.
With the edges in place, he suggested I start with the next easiest thing. For the most part, this strategy worked. But like chronic illness, it was still frustrating. The pieces all looked alike. Pieces that seemed to fit, didn’t. I tried forcing them. That didn’t work. Then pieces seemed to be missing. Some were trapped in the box. Some fell of the floor. One got stuck in the lining of my boot. I wanted to throw things. I wanted to throw things at him.
I wanted to quit. Instead, he’d tell me to take a break. And after a lap or twelve around the house, and more than a few deep breaths, I’d come back to the table. Renewed.
What a relief it was when I connected a few small pieces! Seeing how it fit into the bigger picture was, dare I say, exhilarating.
The puzzle took such a long time. It took far more patience than I knew I had. We stuck with it and soon sat in front of a completed puzzle.
I’m still working on the puzzle that is life with a chronic illness. It has required me to find a resolve I didn’t know I had. It has required me to overcome my tendency to run away from things that don’t come easily to me. It has been a lot of trial and error.
Like anything in life, it’s all about your approach. Knowing that there are necessary cornerstones and structures will take you a long way. But prepare to be frustrated. Prepare to need help. Prepare to be angry, to be sad, to be frustrated with yourself; to be frustrated with others.
Whatever you do, dive in. And stay seated at the table. Even if you really hate puzzles.
1. A “sick” friend. If you’re blessed with a diagnosis, then by garsh, you need to find a friend with something similar. Only your sick friend will understand the uncomfortable feeling of everyone on staff at your pharmacy reaching for your prescriptions without needing to ask your name. When your sick friend says, dang, that sucks, you know she gets it. Being in a constant state of sickness steals your rationality. It takes a sick friend to call BS, say, when you’re constantly looking on the bright side. Your sick friend is the one who says, it’s BS that you feel like this, and it’s okay for you to say so. (Note this sick friend will also call you on any over-the-top pity parties or irrational dropping off the face of the earth.)
2. A creative outlet. Find what makes your heart sing. Maybe it’s knitting. Maybe it’s coloring in your adult coloring book. Maybe it’s using your imagination to find ways to make the crap that frustrates you most, better. And now please—do not give me the song and dance about “not being creative.” Just because your high school art teacher didn’t marvel at your genius doesn’t mean you can’t live a creative life. My favorite definition of creativity is from Bill Moyers (as quoted by Brainpickings): “Creativity is piercing the mundane to find the marvelous.” So what if your creative outlet is organizing your sock drawer. If it feels marvelous to you, then it surely is.
3. A health advocate. My primary care provider has gone to bat with insurance. She’s held my hand while I cried. She’s comforted other patients by telling my story of things we’ve found together that have made me feel better. Recently attended a gastrointestinal conference and was told about a probiotic strain that was good for IBS-C (one of my many diagnoses). She stood in Whole Foods for 30 minutes looking at every brand of yogurt strain to find one that contained this particular strain—then told me about it straight away! (Thanks, McKenzie!)
4. A basic trust in the universe. Or, a healthy existentialist attitude. Whether you believe the world is in constant motion to bring you to your highest and best—or if you believe the world is indifferent to you so it’s on your shoulders to try to make the most of any situation—the comfort gained from leaning inward toward your essence is immeasurable.
5. Child’s pose. When everything else fails, and you’re not sure about anything, get down on your knees and put your head to the ground. If this is too painful, and sometimes it is for me, try a supported version. This is medicine I use daily. And it works. No matter how angry or sad or frustrated or overwhelmed I feel before, I feel immensely better after spending time in this yoga pose of surrender. I suspect you might, too.
Pain is inevitable. Suffering is optional.
I have three sources of energy. Sleep is not one of them. I pretend it is by monitoring all aspects of my slumber, trying different bedtimes and wake times and room temperatures and routines, diets and sleep apnea treatments and light therapies and doctors, but here’s the sum of what I’ve learned: It doesn’t matter. I’m still chronically tired.
I feel rested in three hour increments. It doesn’t matter what I do during those three hours: Somewhere between 150 to 210 minutes after my last bout of sleep, I’m exhausted.
My Sources of Energy
• Source 1: Adrenaline. Lately my adrenaline rushes come as a reactionary response to negative stimuli. Usually a deadline—as simple as an article that’s due or the refrigerator is devoid of anything fresh. My favorite (ha) is the Shame Deadline. Maybe you’ve experienced it, too: the laundry in the washer is beginning to stink; your child cries when you stuff her feet in her too small athletic shoes; you haven’t left the house in 3.5 days.
• Source 2: Sugar. I’m in a constant struggle of managing blood sugar and managing a stomach that hates most food that enters it (thanks, IBS). Veggies or protein; sugar or fat, it matters not: I can feel hungry and crash, I can feel satiated and crash, I can eat greens and crash, I can eat dairy or chicken breasts or tofu or legumes and crash; I can eat Reeses Peanut Butter cups or the gluten free almond donut served at my favorite coffee shop and crash. Can you guess which one gives me the most energy, fast? I’m fully aware that eating sugar and carbs will spike my blood sugar. But I’m crashing no matter what I eat. Might as well ride a momentary high.
• Source 3: Caffeine. Oh, how I love thee. Without you, I wouldn’t get my daughter’s lunch ready or get her dressed on time or ever comb her hair. I never leave my house except for the search for your glorious head rush. You hold my eyes open, as if little toothpicks have been jammed between my eyelids. I might as well be asleep, for all the cognitive ability I have in those shaky moments where you let me forgo a nap, but you get me through the day. Thank you.
I know so many of you will argue—correctly—that I’ll feel poorly as long as I ride these highs. I’m sure you’re right. But unless you’ve been forced to live in three hour increments, and unless you go to the doctor every three months to make sure your organs haven’t decided to maim you, and unless you’re going to take over my life long enough for me to completely wean my body off the only things that keep me going, then this is how life shall be for me. And until this mess is resolved, you can take my caffeine when you pry it from my cold dead hands.