tips for planning ahead with myasthenia gravis

Combat Fatigue with Rest and Planning Ahead

Last updated: August 2022

When we have a disease such as myasthenia gravis, how do we function? How do we continue to work, do our chores, be a spouse, a parent, cook, go shopping?

How do we do pretty much everything most people take for granted? We used to be able to do it all. Yes, we’d be tired, but usually not exhausted. Myasthenia gravis has changed everything!

How do we cope?

How do we still have the ability to do things we enjoy with our family and friends? How do we cope when all we feel like doing is sitting in a comfortable chair or remaining in bed? We all go through these trials to some degree, so what are we to do?

We can’t stop enjoying life and there are things we still want or need to do. Through trial and error, I have found a few ways that work for me. Hopefully, some will also work for you!

Making time for rest

At the time of my diagnosis, I had a full-time job that generally required many more hours than 40 a week. Since I worked from home and could determine about 25 percent of my own hours, I would take an extra-long lunch to relax or nap and another break in the evening.

When I didn’t sleep, I would still close my eyes to rest them so I could focus better later. The computer screen and television would tire my eyes quickly and things on the screen would become blurred. When I rested my eyes, I applied a cool, wet rag over them. That helped me so much! Just 20 to 30 minutes and my eyes could focus again.

I remember those days when I could go shopping with my husband, our 4 children, and be gone all day! Now, just let me do what I have to do and get me home. I try to rest as much as possible the evening and night before a big day.

Adjusting your schedule

If I don’t have to, I do not start my days very early. I’ve never been a morning person and it’s even worse now. We schedule most appointments and shopping trips for afternoons. That gives my husband and me time to sleep as long as we need and time to get ready without a rush. We both seem to tolerate the long day better.

If you’re the opposite and love the mornings, get to bed early and don’t try to get everything done the evening before, do it sooner. Plan ahead whenever possible and rest before any activity that may tire you out!

Prepare for events in advance

For parties or large family gatherings, prepare what you can of your food at least a couple days in advance. Don’t try to do it all. Ask for help!

My husband and I enjoy cooking and we cook mostly from scratch. What I like to do so I’m not cooking every day, I cook at least double the amount. I split it up into portions for the 2 of us and either put it in the refrigerator for the next day and/or freeze for a later time.

So I’m not so rushed, I try to prepare everything I need before I even start cooking. That includes cutting my herbs and vegetables and getting my supplies out. The key to all of this is to have a support person, rest, plan ahead, do what you can in advance, and ask for help!

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