Fashioning my own Top 10 ‘spoon commandments’ for health
To live better with lupus, I'm offering tips to preserve or heighten your energy
More than 20 years ago, Christine Miserandino explained living with systemic lupus erythematosus, the most common form of lupus, as having only a metaphorical “12 spoons” of energy a day. Her spoon theory does a great job of representing the tightrope walk of survival that we endure.
The spoon theory became widely known throughout the lupus community, but it doesn’t offer a plan to manage the spoons. However, Bionews columnists and others have offered their survival strategies.
In the musical “Hamilton,” one of the stellar numbers is “Ten Duel Commandments.” The song, by Lin-Manuel Miranda, is his lyrical spin on the Notorious B.I.G.’s “Ten Crack Commandments.” Both songs are fictional, step-by-step guides to survival and battle.
Without the lyricism and melody of Biggie Smalls or Miranda, allow me to offer these “10 Spoon Commandments” for surviving and thriving with lupus. I’ve spent the last year experiencing the benefits of abiding by each of them.
The Commandments
No. 1: Demand satisfaction. First, remember who you were before lupus caused daily pain, aloneness, career loss, and broken relationships. Then make a list of the nonphysical things that energize you and bring you joy. See if you can name 12 of those activities for the satisfaction of using your 12 spoons daily. Place a loving demand on yourself to live full of hope, curiosity, patience, and intelligence to end each day with something to celebrate.
No. 2: Grab a friend. Find remarkable friends ― what I’ll call “Rems” ― who challenge and strengthen you. Rems may exist within your local lupus community. Seek people who are compatible with where you are in life today, not in your previous lifestyle.
No. 3: Gain strength. Develop a gentle movement routine to build strength, flexibility, and mind-body connection.
Start with light stretching and squats, maybe 10 to 15 repetitions a day, if you can; then gradually increase that number. Swim, practice low-impact yoga, or walk barefoot on grass or dirt. Try three to four sessions a week, starting with 10-15 minutes a session.
You can also use apps to track your daily food intake and physical and emotional changes. There are apps out there that can monitor symptoms and record your daily physical activity, sleep, heart rate, and pain episodes. One app I use is SELF (which stands for “strategies to embrace living with lupus fearlessly”) by the Lupus Foundation of America.
No. 4: Be serious, not scary. You have the power to assess your pain before your doctors can. Maintain regular check-ins with your doctor and keep a journal of your symptoms to assess pain triggers. Organize your medical history in a way that helps you track those symptoms as well as patterns. Study and compare lab results and trends. Organize prescriptions with details on doses, their frequency, and the side effects experienced. Stay informed about emerging treatments and consider joining studies.
No. 5: Grow and eat to live. Focus on eating anti-inflammatory meals and staying hydrated. Make teas and smoothies with ingredients like berries, leafy greens, turmeric, ginger, chia seeds, and walnuts. Grow herbs like mint, lavender, neem, and calendula, which have great anti-inflammatory benefits, and add them to your meals. Plan tea times or recipe-swapping nights that include life-giving foods. And make sure to invite your Rems!
No. 6: Use all benefits. Make full use of disability and insurance benefits, including free gym memberships, meal boxes, massages, therapy, and mental health apps.
Use a budgeting app from your bank to track and assess your income and essential expenses, such as rent, utilities, groceries, and medicine. Plan to set aside money for travel to support your mental wellness. Set aside a portion of your monthly income for house emergencies and repairs. Do research to find organizations that help people who need home repairs.
Keep in mind your long-term plans. Create saving strategies and passive income to cover future living and medical expenses.
No. 7: Heal the past. Begin each day by celebrating that lupus hasn’t killed you. (Please read that again.) Affirm your worth and strength. Set small, achievable goals for the day, keeping in mind your spoons.
Join support groups and receive comfort when needed. Seek out a therapist who has clients with chronic illnesses. Schedule regular sessions to unpack your experiences and explore feelings of guilt or frustration, while focusing on self-compassion and forgiveness in a safe space. Accept care from others and find peace in being loved, even if it’s in nontraditional ways.
No. 8: Engage and elevate. Attend events where you can share your expertise on any topic of interest. Participate in webinars or workshops to stay connected to a career you enjoy. Elevate your voice by recording videos or audio that share personal reflections or professional insight and wisdom.
No. 9: Reclaim your time. Refuse to allow bad memories to harm you. Visit the spaces where negative memories were created and reclaim them through positive experiences with those Rems. Make deliberate efforts to generate joy, such as kissing, hugging, dancing, and laughing with your Rems when strength and pain allow. Reflect on your experiences and recreate the best moments within your new abilities.
No. 10: Leave a note for your next of kin. Write as if you’re running out of time. Meditate on the process of establishing a living will during a time of celebration, not one of fear. Document your journey and focus on self-discovery.
And celebrate!
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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