May 18, 2021 by Judith Allen Shone
Happiness is not something ready made. It comes from your own actions.Dalai Lama
Creating a prioritized, personalized, self-care routine is the best thing we can do for ourselves.
It is worth figuring out what we need and what works, when it works best and how we can cope. Self-care definitions cover a broad swath of life. Basics include eating, sleeping, plus exercise to grooming and hygiene, as well as mental awareness. We also need to be sensitive to the specific needs beyond basic self-care practices.
Various needs require personal strategies
There is no one self-care list for someone with myasthenia gravis, no one recognized protocol, so as in many walks of life, we learn from our doctors and from others .
MG is called a snowflake disease because we are all different with different symptoms. We have different levels of weakness, experience different degrees of physical abilities, live in different locations and in different situations and some have different amounts of help—we all have different needs.
Online there are any number of myasthenia gravis websites that have a theme related to (keywords) self-care or self care for, or various ways of living with myasthenia gravis. Some have detailed specific focus while others are general. Not all will apply to everyone. But there is a good chance there will be meaningful strategies online to help with personal self-care action plans. See the Resources page for links to sites that might help.
It is worth taking time, perhaps with someone helping, to find aspects of behaviors that will help make living our life better.
Make self-care personal
If you wish to create your own Self Care plan after searching and seeing what information might be helpful, this blank form is here for note taking and organizing a unique personalized plan.
I had a thymectomy in 1961. After university, after marriage, after having children, after beginning a career, remission seemed to surface about 1981. Naively, I thought it was 100%, but I have come to realize, even remission is fickle, equally as unpredictable as MG itself. So, while I no longer have the severe muscle weakness of the earlier years, I still have fatigue, especially in walking. I still am limited in my physical activity. I still get exhausted and tire easily.
While living with myasthenia gravis I have learned I must be very tuned-in to my body and its needs. I know I must be aware of those situations I can control and those where I will not have that opportunity.
That means thinking about myself, or doing things for my benefit. I have learned that is what self-care is.
First, I know MG is a disease of fatigue. For me, fatigue emerges on a random schedule. If I do not feel rested, I must rest. Since our abilities sometimes change minute to minute, I must recognize my own energy level, acknowledge and respect my own capabilities at the moment. I act. I wait. I postpone. I cancel.
My years of parenting and my career are behind me. I retired thirteen years ago. I will be 80 next year. I have learned much about self-care during the past ten years being a caregiver for My Love with Alzheimer’s, vascular dementia, COPD and anxiety. Since he is now in stage seven, I pretty well do most things for him or with him. We wear his shoes together. In the meantime, I have developed a balance issue. Plus, I have felt recently that myasthenia has reawakened, or perhaps I notice it more. We cope because over the years I have learned to limit activities.
The first thing I generally think of when it comes to self-care is what can I do to help me be healthier? Sleeping eight hours and eating three meals would normally be an answer, along with continued good grooming habits and physical activity. But those concerns are not always possible when caring for one who has slipped into that phase where he has no sleep routine, where he awakens at all hours and roams. All sort of unwanted possibilities loom when that happens. I must be awake when he is so that I can, through sleepy, and sometimes incoherent, conversation or physical guidance, direct him back to bed…two or three times in a night.
Sometimes I can’t wake him for seventeen hours and yet he sometimes sleeps only five. His first needs are for meals and liquids which means I must prepare meals on a different schedule each day, depending on his waking hours. I can’t always wait for breakfast until 2:00pm so I must make my meals separately.
This is not the blog to tell my caregiving story, but My Love’s story has intertwined with mine more and more each day and can’t help but become part of my myasthenia gravis story. (My books are noted below.)
Needless to say, caregiving accompanied by a reawakening of myasthenia gravis has been exhausting.
In a day, I generally schedule one major event, like grocery pickup, laundry in the basement of our apartment building, or vacuuming our small home. Meal preparation is best when I have it ready to warm up instead of cooking a meal from scratch so one day I make big batches for freezing. It takes a little longer, but washing dishes can be split up into washing dishes, washing pans, drying dishes, drying pans, and putting them away…with rest between each one. When a nap is necessary in the middle of an activity, I stop and rest. Even the tasks I do to help My Love, like showering and shaving him, are done in shifts and when I am rested. Life has slowed down, but I am used to it now.
Being two people, as I say I am right now, has not left much time for the luxuries…the fantasy self-care I imagine. For years I have not had time for hair styling, applying makeup, for relaxing in the tub with candles and a book, nor having a social hour with friends or uninterrupted meditation. But self-care covers the basics and then more. I have been fortunate to have a computer where I can satisfy the ‘more’… my creative needs.
Basic routines and priorities are readjusted all the time. We know our medications must be taken. We know we need water. We know we must get up and walk. I have arranged our home so it is easier to move through without obstacles. When we are fully vaccinated and the coronavirus is deemed ‘clear,’ I will consider having PSW help back in my home.
While I do not like frequently talking about illnesses and things that are wrong , to eliminate the stress of peer pressure or guilt that I used to feel when I was younger, I have told family, and continue to tell friends, of my disease and my need for rest. They know that it may become necessary for me to change my plans to accommodate my fatigue. They know I must do ‘my thing’ and not worry what anyone else thinks. That attitude has helped keep my life somewhat stress-free, an important strategy for one with myasthenia.
But as strange as it may sound, I have found positive thinking and humor are absolutely necessary. This is no small part of my self-care. Even while I still feel tired, being optimistic has generally improved my quality of life. When situations seem gloomy, a smile and positive thoughts have carried me through. I do not mean covering up or denying reality. I mean just turning the circumstances into a happy moment, seeing the good, however small. With less negative in my mind, there is room for positives.
My motto: Each day, do something that makes others smile and your heart sing.
My goal: To keep an attitude that lifts my spirits…and thus yours.
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I wish you well on your journey.
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Self-care I practice © 2021 Judith Allen Shone
For those who want to discover the spouse-caregiver world of one caring for a loved one with Alzheimer’s, Anxiety and COPD, read these books.