MS Awareness Month: Ways to Live Sustainably With MS

As a creative person, I often assign keywords at the beginning of each year to help me frame my energy. Some words in the past include resilience and alchemy. This year, I settled on the word sustainability.

Why sustainability?

Living through the continued anxiety and risk of the pandemic has made me ultra-conscious of my energy. How will I sustain myself? On top of that, more changes in the climate — such as more wildfire frequency — make me reconsider the size of my own carbon footprint.

But living a sustainable creative life takes more than an ecological mindset. It demands thoughtful decisions about the products you buy, the energy you use, how you discard waste products, and what you prioritize.

From this angle, I think of sustainability as:

• working smarter, not harder
• scaling activities to make them more manageable
• taking time to nurture yourself mindfully

It occurs to me that these three concepts make good goals for living with multiple sclerosis (MS).

Smarter, not harder

Let’s face it: Life with a chronic illness comes frontloaded with task-mastery:

• appointments for MRIs, blood tests, symptoms, therapy, support groups
• constant planning around what you can and can’t do on any given day
• daily disease management at home (even the simplest things can be a struggle)

One way to live more sustainably with MS: live smarter by keeping a shorter “need to-do list.” For instance:

• opt for phone calls, virtual sessions, or emails to replace in-person appointments whenever possible
• batch your appointments to one day a week, if possible, rather than daily disruptions all week long
• ask for help for things when energy dwindles (grocery shopping, housekeeping, cooking)
• when invited to an activity that may cost you energy, decide in advance how much energy you're willing to spare for it before participating, then participate (but stick to your plan)
• learn to say no to anything that doesn't serve your best interests

Granted, you can’t control every task, nor can anyone overcome every hurdle in a system (especially healthcare). But you can be more mindful by choosing to say no when possible, or finding approaches to tasks that better meet your needs rather than doggedly (unsustainably) “powering through” task after task, day in and day out.

Scale to manageability

Making life manageable when you live with a chronic illness is key. No matter where MS strikes you (legs, speech, vision, hands, bladder, etc.), you’re going to need to manage uncertainty, pain, dysfunction, and low points. This means recognizing your limitations — not as failures, but as facts.

Don’t forget, even healthy people deal with limitations. Even they can’t do “all the things” without paying some kind of price — it’s unsustainable. Being honest about your limits allows you to commit more mindfully to things you want to do while letting go of the rest.

For instance, if your MS bladder misbehaves, you can still take that short trip away from home. Pack backup pads and supplies, use an app that locates public restrooms wherever you go, or insert a catheter to enjoy freedom from worry before heading out. Doing so means you still take the trip in spite of your bladder. You make MS manageable. Sustainable.

Self-care for the win

Sustainability prompts, at its core, a need to protect, maintain, and nurture. Why not make these mini-life goals?

Protect yourself

Think of the shields and armor you already have at hand:

• medications
• cooling vests
• hand controls
• assistive devices
• functional clothing
• smartphone apps
• earplugs

These exist to protect you from pain, progression, discomfort, or isolation. Use them! And don’t forget mental health protections. For instance, taking a social media vacation really does help sustain positive energy.

Maintain your health

Good health practices provide the foundation for sustainable living. That means making a priority of:

• hydration
• sleep
• exercise
• time spent outside
• nourishing meals
• carefully adherence to treatment protocols
• relaxation and mental wellness
• support groups

Nurture yourself

You’re not a walking disease. You’re a complex, whole person with many layers — physical, emotional, spiritual. What you love about life should be the center of your life's focus. Is it your:

• friends and family?
• job?
• hobbies?
• time spent in nature?
• community?

You can call these focal points your “want to-do list.”

But make no mistake: Though these aren't technically "obligatory" like your "need to-do list," these elements of your life are still deeply desirable and, honestly, necessary to your whole health. Nurturing these bonds and interests isn’t optional if you want to sustain a grounded, satisfying life, even while living with MS.

How can you live more sustainably with MS?

Think about how you could live more sustainably with MS. Try to make your whole self — not just the disabled parts —the center of your life's focus. MS may create obstacles, but so be it. There's power in working around them. In doing so, you can sustain the life you want, regardless of MS.