We are sharing some simple things that may help you care for your mind, body and soul.
Dealing with myasthenia gravis in the family can seem like it takes all of your focus, leaving little time or energy for your own needs. Self-care is absolutely worth the effort and it can allow you to better care for your loved one. Caregivers—whether spouses, partners, friends or family members—can support loved ones without becoming overwhelmed or unhappy. Balance and self-care are important. Here are some helpful tips.
2. Get Enough Sleep
Generally, seven to nine hours per night is considered adequate.1 A good night’s sleep can be restorative and may help people function better with less anxiety.2
Exercise can take on different forms, whether it is taking a walk, playing with your kids or grandkids, or weeding your yard. It can be anything that fits your lifestyle and gets you moving. If you have kids, ask them to join you. Exercise has many benefits, including helping to reduce stress and anxiety, boost self-esteem and reduce blood pressure.3
5. Consider Speaking to a Counselor or Join a Support Group for Caregivers
Therapy and support groups can provide safe spaces for you to vent and explore your emotional health. You can find a licensed professional online, starting with your health insurance provider, to determine if therapy is covered under your plan. Also check out your state’s medical board website. For more information about therapy resources, read “How to Have Good Emotional Health and MG at the Same Time.”
6. Enlist Your Kids
If you have kids old enough to pitch in with household chores, ask them for help with dishwashing, doing laundry or vacuuming. Some parents have no problem with this; others may really struggle with it. If you’re in the latter group, go back to step one: acknowledge that you sometimes have more to do than any one person can get done in a day. That’s when you need to delegate. And you may be surprised at how much they are willing to help out.
8. Ask Friends and Family for Help, even if It’s Uncomfortable for You
Don’t be shy about asking; people affected by MG often need help. Perhaps a friend or family member can take the kids to school? Or maybe a neighbor can tend to your garden? Text, call or connect with people through phone apps. There are a number of sites that let you chat together or organize for friends and neighbors to do things, like bring you meals.
10. Communicate Openly with Your Loved One
Give each other room to express feelings—and be as kind as possible while doing it. In Detroit, MI, psychologist Diane K. and her spouse living with MG refer to it as ‘kind confession.’ “It’s where we give each other permission to voice difficult feelings to each other, as long as we do it in a compassionate way,” Diane says. “With kindness, you can discuss sensitive subjects, like household chores, without fighting or silent resentment.”
Let your partner opt out of an activity or chore with dignity. Try to accept that they’re simply too tired to do it. It’s not a choice.
With kindness, you can discuss sensitive subjects, like household chores, without fighting or silent resentment.
11. Reset Each Day
Every day is a new day. Take a moment every morning to reflect on the positives or meditate. Life with MG is unpredictable, which means that yesterday’s fatigue may be replaced with a shot of energy today, and vice versa.
12. Use a Writing Surface, such as a Whiteboard, to Facilitate Communication
Certified patient experience expert Susan Woolner recommends that caregivers place a whiteboard in a prominent place in the kitchen to use as an MG communication center. “List things you need help with or things that are bothering you. If MG stops you from doing something, write that down, too. It can be an easy way to communicate requests for help. And it helps you share a powerful visual record of how MG affects your life together.”
13. Use Rankings to Communicate the Daily Status of Your Partner or Spouse
A ten-point scale or a thermometer rating (low to high) can quickly convey how MG is affecting your spouse or partner on a given day. People living with MG may not be able to articulate how much they’re struggling with a symptom such as breathing or vision, but they can always say, “I’m at a seven today.” You may need several ratings for things they struggle with, whether it’s breathing, vision, muscle weakness or brain fog.
16. Direct Negative Feelings at MG, Not the Person Caring for You
Managing MG is you and your loved one’s common goal. If either one of you gets frustrated, find an emotional outlet rather than direct those feelings at each other. It’s a mind-shift that can make all the difference and allow MG to bring you closer together.
This takes partnership, according to Diane K. “If you trust yourself and your partner, you can get to those vulnerable feelings behind the frustration. You can take the blame out of it,” she says. “MG can be the bad guy instead of the person who has it or the person who loves them.”
For those who care for people living with MG, the struggle is real and can be overwhelming at first for everyone in the household. It’s important to take care of yourself—and that means making adjustments and coming up with a plan. Strive for open, honest communication. Explore different ways to get things done. Above all, be good to yourself by staying healthy and carving out time to do the things you love. Tending to yourself and your needs will positively impact the person in your life who’s living with MG.