Life with myasthenia gravis is hard to predict. Muscle weakness and other symptoms change from day to day and from one hour to the next. You might wake up feeling great, but by the afternoon you're too weak to stand.
One thing you can know for sure is that you'll feel tired and low on energy at some point. Four out of every five people with myasthenia gravis have fatigue severe enough to affect their daily lives.
A few simple tricks will help you make the most of the energy you do have.
Plan Your Days Around Your Energy Level
Your energy level will be higher at some times of day than at others. Be flexible and adapt your activities to how you feel.
Don't push yourself too much. Listen to your body. Slow down and take more breaks when your symptoms are flaring. If you're too tired to mow the lawn, pull weeds in a small section instead and do the mowing on another day.
Save activities that require the most energy, like shopping trips, for times of day when you feel best. That may be after your medicine starts to work. Do activities that require less energy, like paying bills, when you're most tired.
If you work, ask for a flexible schedule. Work from home or take the day off when you're low on energy.
Schedule Rest Breaks
Fatigue is a very real part of life with myasthenia gravis. You will get tired. Your muscles will get tired. Don't push yourself and try to do too much.
Muscle weakness gets worse the more you move. Rest breaks will give your muscles a chance to recharge. Watch for signs that you're tired. When you see them, stop what you're doing and give yourself time to rest.
Break up big chores into smaller segments. Chop vegetables for dinner and put them in the fridge. Come back and cook the meal once your energy renews. Clean one room at a time. Get ready each morning in small steps. Take a shower. Rest. Dry your hair. Rest again.
Keep a Symptom Journal
Write down your symptoms each day, and what you were doing when they started. Over time you'll start to see patterns. You'll get to know which activities you can handle easily and which ones tire you out.
Share your journal with your doctor. It's also a guide to how well your treatment is working.
Take the Easy Way
Change everyday tasks to make them easier.
- Cut your hair shorter so it takes less time to dry and style.
- Sit on a stool or chair when you brush your teeth, shower, dry your hair, cook, and fold laundry.
- Take a sponge bath instead of a shower.
- Wear slip-on shoes.
- Get a handicapped parking sticker so you don't have to walk as far.
- Use a scooter when you shop.
Ask for Help
You don't have to do everything yourself. When friends, family, and neighbors offer to help, say yes. Or ask them for help when you need it.
It's easier for people to help you when they know exactly what you need. Be specific. Say, "I need a ride to the doctor's office next Thursday at 10 a.m." instead of "Can you drive me to an appointment?" Or you might ask, "Can you watch my kids for an hour tomorrow?"
Make Mealtimes Easier
Myasthenia gravis weakens the muscles you use to talk and swallow. Try to eat at times of day when your energy level is highest. That's usually about an hour after you take your medicine. See a speech-language pathologist for exercises to strengthen the muscles you use to eat. They can also offer tips to help you eat more easily.
Get Enough Sleep
You need more rest now than you did before you had myasthenia gravis. Sleep helps your body repair itself and fights fatigue.
The ideal amount of sleep is 7 to 9 hours a night. That much rest may be hard to get because myasthenia gravis can affect your ability to fall asleep and sleep through the night. If you take steroids, they could leave you too wired to sleep.
Try these tips to sleep better:
- Do something to relax before bed. Read a book or listen to soft music.
- Put heavy shades on your windows to keep your room dark.
- Don't eat a big meal or drink alcohol for at least 2 hours before bed.
- Keep your room cool and quiet.
- Make sure your bed and pillow are comfortable.
Add naps into your day to make up for sleep you lose at night.
Rest Your Eyes
Myasthenia gravis also affects the muscles that move your eyes. It could be harder to focus on your computer screen or the pages of a book. Stop every few minutes to rest your eyes while you work or read.
Try to Stay Positive
It's sometimes hard to see the bright side when you have a chronic condition that makes you feel weak and tired. But persistent sadness can harm your quality of life. Being under stress could make fatigue and other myasthenia gravis symptoms worse.
Reach out for help when you feel sad or overwhelmed. Talk to a therapist or counselor. Or join a myasthenia gravis support group.
After a while you'll figure out which of these techniques work best for you. You'll learn how to make the most of the energy you do have. And you'll start to feel more in control of myasthenia gravis instead of the other way around.
Show Sources
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SOURCES:
Brigham and Women's Hospital: "Ocular Myasthenia Gravis."
Cleveland Clinic: "Myasthenia Gravis (MG)."
Conquer Myasthenia Gravis: "Save Your Strength."
Mayo Clinic: "Myasthenia Gravis."
Myasthenia Gravis Association of Western Pennsylvania: "Task & Energy Saving Techniques."
Myasthenia Gravis Foundation of America: "Managing Your MG," "Sleep Right, Sleep Tight."
My Aware: "Top Tips for Living with Myasthenia Gravis."
Neurology and Therapy: "The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis."
NHS: "Fatigue in Myasthenia Gravis."
PLoS One: "Factors Associated with Quality of Life of People with Myasthenia Gravis."
