Mark Harrington talks about the frustration of MG fatigue and the freedom that came when he learned to slow down. With support from friends and mindful routines, he discovered how rest could become a form of strength. Read his column here.
Transcript
My name is Mark Harrington, and I live in Dallas, Texas, where I have been living for about the last 30 years. I am the author of a weekly column that’s published by Bionews. It’s entitled Together.
I think one thing to understand about MG fatigue is that it is completely different from ordinary fatigue or from being tired. I have two thoughts about this.
One is we don’t have the difference in the English language that we make use of between being tired and what other languages would consider fatigue. For example, in French you can be tired, but you can also be épuisé. You’re tired, it’s fatigué. If you are worn out and cannot move, it’s épuisé.
This came home to me very clearly when I was first diagnosed. At that time, I almost was embarrassed because I felt like, oh, I’m ruining the day for everybody else.
And also, you’re out in public among all these people, and all of a sudden you are doing something that you think is going to be distracting for everybody else. There are times where I feel guilty that I’m making the people around me uncomfortable.
But if you’re patient with me, if you realize that there are going to be times where I’m going to have to back out of something at the last minute, or maybe even leave at an earlier time than I had expected.
That’s going to have to be my new normal. And I have to say that my circle of friends, they’re all on board with that. And they know that, you know, any time I may back out or I may have to leave.
And knowing that they know that and are comfortable with it is really a good feeling. I think that in order to adapt to the fact that fatigue is now part of your life, there’s a couple of things you can do.
No. 1, take a day or so and sit down at your desk or wherever you do your thinking and your working, and break down your week. What I’ve done is I’ve taken the things I need to do every week, and I assigned them a place in the week. For example, laundry could be Monday.
I prep all my meals for the week on Saturday and Sunday so that during the week I don’t have to put a lot of energy into getting that done.
What you can do is take the things that need to be done, put them in the schedule and stick to it. And by stretching them out over the course of a week, they no longer seem like these insurmountable obstacles. You now see little things that are easier to cope with.
And importantly, if you’re too tired someday to do something, don’t do it. There will always be a tomorrow or the next day, or maybe some weeks, it just doesn’t get done. The important thing is, I think every day, No. 1, keep your medicines on track.
No. 2, have some time for yourself where you do something that just isn’t important, whether it’s reading a book or sitting in a chair doing nothing. Go outside with the dog and toss a ball. Or just have him or her sit there with you. But you have to take control over your days.
I know when I was first diagnosed for quite a while, it felt like everything was out of control. But once I realized that doing things I could control that would give me peace of mind, I was better able to cope with the illness.
Because there’s one thing about this illness and other rare diseases. You don’t know when the curveball is coming. You don’t know what day something’s going to come along you just didn’t expect.
Take care of yourself, first of all. Take inventory of where your energy levels are and act accordingly.
