A Day in the Life of MS

dead-battery-1623377_960_720This morning my thermostat batteries died, so of course, I changed them.

No biggie, right? You’d think, but not for me. Not any more.

Ten steps from the living room couch to the thermostat to diagnose problem.
Eight steps to the drawer to get AA batteries.
Nine steps to the thermostat to try to put in new batteries.
Failed effort, due to blurred vision, weak fingers, and trembling legs.
Eight steps back to the drawer to retrieve a screwdriver for battery prying.
Eight hand-on-wall steps back to thermostat to pry with one end of the screwdriver and pound with the other as legs shake like my dryer on the spin cycle.
Eight wobbling steps back to drawer to return screwdriver, accompanied by muttered prayers.
Eight final wobbles back to couch, followed by plop-and-prayer for sleep.

At 8:30am, I’ve completed my first marathon for the day. There will be many more. A trip downstairs to do laundry, gripping the railing and leaning against the wall. Pulling myself back up the stairs carrying small loads of clothes I can manage.  Simple tasks I completed without thought by others exhaust me since being struck by multiple sclerosis (MS). Putting on pajamas or dressing  can seem insurmountable.

But not just for me–for many people who live with chronic illness.

Low Batteries: Fighting Fatigue

Medical experts report that it takes five times the effort for people with multiple sclerosis (MS) to accomplish the things healthy people can do. Put this into perspective by thinking how tired you’d be if you did five day’s work in one day every day for the rest of your life.

You can almost always assume someone with MS or other chronic illnesses are trying to beat back exhaustion. I’m in my pajamas by 6:00pm. I attend evening events very seldom. When I go to church on Sunday, I have a “down” day on Monday. I’m proud when I walk on the treadmill for five minutes. On “down” days I drive to my mailbox to conserve energy for more important things (hey, it’s a long driveway).

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The Pain of It All: Symptoms

MS symptoms vary widely. I people with MS can lose color in their vision. Their sight can also diminish in other ways. My vision has blurred, making it difficult for me to read and work on my computer, even with a 24″ monitor. Migraines can last for days and weeks. Debilitating neuropathy pain in legs, feet, and hands often escalates at night, along with  ongoing muscle spasms and cramping in legs, feet, and back.

About that Twitch: Neurological Problems

Many patients with MS find the path to diagnosis long and frustrating because symptoms can mimic so many other things: lupus, sarcoidosis, Lyme disease, stroke, and other illnesses. For this reason, other illnesses must be ruled out when making an MS diagnosis.

MS is a neurological disorder that causes the protective myelin covering over the nerves in the brain to deteriorate. The nerves become exposed, which causes lesions (tissue abnormalities), not tumors (cell clusters that grow). Brain lesions multiply over time, causing increasing disruption of brain and, therefore, body function.

My lesions attacked my brain stem. I’ve had two major attacks–the first in 1999 and a relapse in 2014. MS patients seldom return to the same threshold of health after a relapse. My relapses have affected my walking, balance, hearing, vision, swallowing, memory, resilience, and cognitive function.

For instance, I now work use a 24″ computer monitor. I must take breaks every hour to “rest” my brain.  I walk on the treadmill in 5 minute increments, which is my usual max time. I no longer work at my computer beyond lunchtime because of fatigue. I experience frequent and prolonged migraines. My legs and feet cramp continually. I take medication for neuropathy pain in my legs and feet. And like most MS patients, I’m always cold.

Takeaway: Eyes Wide Open

Suffering can bless us with a perspective on others’ pain. It can either bring us into community or isolate us; drive us to bitterness or build our awareness of the sorrow that surrounds us. Chronic illness can gift us with unique sensitivity to those who quietly suffer–not necessarily with illness.

Jesus saw the needs of those who stood at the edge of the crowd, who were unable to push to the front, who could only catch the edge of His robe, or who climbed into trees to see Him. They were all looking for someone who cared enough about them enough to reach out and help, maybe even love them.

Jesus touched unclean bodies. He used the power of His words, His hands, His presence, the hope in His eyes, His wisdom. You may be sick–but you can use your pain to touch someone else. A day in the life of your pain may have given you the gift of words, experiences, the touch of a hand on an arm, of prayers, quiet presence, hope, or encouragement needed by someone else. Are you willing to live with eyes wide open to give to others, even in your illness or pain?

Caring for a Sick Spouse

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For the past forty plus years of our marriage, my husband and I have taken turns being sick and having surgeries. Not long after I married, I came to the realization that my husband would be undergoing knee, ankle, and foot surgeries for the remainder of his life. Dan’s walking abilities would gradually become more and more impaired. This created a hope for us to fulfill certain dreams sooner than later.

This thought intensified when I became critically ill with an undiagnosed neurological disorder in my early forties. Dan became lovingly protective of my health in the ensuing years, especially after my symptoms progressed and I underwent brain surgery. I also became increasingly concerned about Dan’s walking. We often competed over household tasks–who would do which chores so the other wouldn’t have to, both of us secretly doing laundry or shopping before the other had the chance.

I’m not sure who’s done the most caregiving in our marriage, but I can tell you Dan’s done a great job caring for me. I know that when one spouse is caring for the other, it’s easy for caregiving to overtake other priorities in the marriage. Spousal caregiving is tough, and I think that success if found in the small things.

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  1. Find ways to enjoy each other. Focus on the things your loved one has always been interested in and loved. Read or listen to books about those things. Watch a TV show, movie, or series about them. Research a prominent person in that field. Or you might consider taking a fun online class. Complete a project (genealogy, writing, birdwatching, creating an e-book, or organizing family pictures, etc.
  2. Listen to music and recorded books. This doesn’t take time from your daily route and can also be enjoyable for your loved one. Check your local library for books on CD. Be sure to ask your loved one about their interests so you can come up with mutually chosen titles.
  3. Do things you like separately. Find a favorite spot in a local park, library, museum, or space nearby where you can slip away for refreshment. Spend time with friends at least once a week. Ask some from your family, church, support group, or community to give you the opportunity for respite.
  4. Create “islands” of respite each day. Step out of the house and look at the sky. Keep books in the bathroom and take short reading breaks. Ask friends to stop by and visit for an hour or two so you can walk around the black or take a drive, visit the park or library, a movie, or time to drive some place quiet and enjoy the solitude. Spend ten minutes in your garden (or your neighbor’s).  What refreshes you? Find ways to inject mini-burst of these things into your day.
  5. Find someone to confide in. This may be someone who has cared for their ill spouse or a compassionate, affirming friend. Caring for a spouse can stir feelings of anger and frustration, and husbands and wives can feel like they’re betraying their loved ones by sharing confidences and circumstances that can naturally result from the stress of caregiving.
  6. Call a friend or family member every day. You need connection to the world beyond the walls of your home. Take time to stay connected to close friends and family members. Ask about their lives, interests, and prayer needs. Whenever possible, use Skype or FaceTime. You need to see faces, and people need to lay their eyes on you.
  7. teamwork-294584_960_720Ask for help. You need help–regular breaks, physical, and emotional support. If your spouse has adult siblings, ask for their physical help or financial assistance to hire aides, respite workers, or to secure a respite facility on a scheduled basis. If they refuse, look for someone to assist in mediation–a pastor, counselor, or senior care specialist, or possibly even a lawyer. If you have adult children, ask them to help. Include your church or parish when you ask for assistance. Many churches are able to offer considerable help. And always consult county social workers and the Area Agency on Aging to see what services you qualify for. We were grateful to discover free respite care for our loved ones that allowed us getaway breaks a few times a year.

As much as possible (and it isn’t easy), try to compartmentalize spousal care from your personal time together. Try to preserve time for the two of you to simply enjoy one another. One of my most treasured memories is of watching the light in my mother’s eyes as my dad read his diaries to my mom during the years she lived with Alzheimer’s. Even in the debilitating shadow of Alzheimer’s, couples can share meaningful moments together.

PHOTO CREDIT: 9jaFlave