Managing Fatigue with MS: Tips on How to Keep Your Social Life
Do you know that person who has something going on every night of the week? Rock climbing on Mondays, piano lessons on Tuesdays, church on Wednesdays, dance lessons on Thursdays, and then to the cabin on Fridays? Well, that person was me! Growing up, I always kept busy- I don’t know how my mom got my siblings and me everywhere we needed to be every week! Kudos to her!
However, when I was in 8th grade, and my symptoms started appearing, I had to cut down on my activities. In fact, they practically disappeared. I was simply too tired to go to any of my evening activities. As I recall, the only activity I participated in was church, and that was on a (semi) weekly basis. I had to say goodbye to piano, goodbye to dance lessons, and for a while, had to say goodbye to time with my friends. It was hard not doing much of anything. I felt as though I wasn’t doing enough, but when I started doing things, I felt as though it was too much. Sure, my friends stopped by here and there, but it wasn’t the same. I missed a lot of school, so I didn’t get that social interaction each day. That was when I started to learn how to budget my energy.
Through Physical and Occupational Therapy, I learned a lot about myself, how I can be successful, have fun, and how to pace myself in my activities.
Picture a full glass of water. This glass of water represents the amount of energy a person has on a given day. With each activity, the glass is emptied a little, until at the end of the day, only a small amount of water remains at the bottom of the glass. But, in the morning, after a good nights’ sleep, the glass is full again!
Now picture another glass of water. This glass of water represents the amount of energy a person with MS has on a given day. But instead of being emptied a little with each activity, it is emptied twice as fast (sometimes even faster). For a healthy person, the glass can be nearly emptied by the end of the day, and the person will be able to do the same the next day. However, for me with MS, it is important for me to not let the class empty below the 25% mark. If the glass is emptied below the 25% mark, it will take me a lot longer to refill the glass.
I have learned that in order to help keep my glass full, I need to monitor what energy I am using. For example: If my friends invite me to go to dinner and bowling on a Wednesday night, and I know I have a busy day on Thursday, I would agree to dinner, but may bow out of bowling - to conserve my energy.
A couple of months ago, I attended my school’s prom. My friends made plans to go to prom (7pm-12am), go bowling afterwards with laser tag, and then have a bonfire. Sounds like fun, right? I was really looking forward to staying up late, hanging out with my friends, and having a great time. But, since prom was on Saturday night, this meant I would only have one day to recover, or refill my glass of water if you will. I also reminded myself that Monday through Friday of the following week was going to be spent getting ready for the school’s musical. So, instead of staying out all night with my friends, I opted to dinner beforehand, prom, but then we left early to go bowling. This actually ended up being a lot of fun, and my friends completely understood. Actually, we were all glad to leave prom a little early; five hours of dancing is a long time!
At one time, I really needed to keep my glass 80% full or it drained too quickly. My body was spending a lot of energy healing the lesions on my brain. My “refill” time was also longer - the reinforcing waters came much slower than they do today. Since those lesions have healed, I have been able to “drain my glass” a little more without too much trouble. I still need to keep some in reserve, but that is the nature of multiple sclerosis. Listening to our body is the best thing we can do for ourselves. Convincing others to let us listen to our bodies is equally important.
One thing that I keep coming back to is communicating with others, and advocating for yourself. By advocating for myself, I was able to ensure that my glass would not be emptied too much. Instead, I got to about the 25% mark, and was able to enjoy the rest of my week, which ended up being a very busy week as well! By communicating with my friends, they understand that my glass cannot be emptied. They are now inviting me to different activities, and know that when I have to leave early, it means that I am just pacing myself.
With this in mind, while it is important for my friends and family to trust that I will stop when I need to, it is equally important for them to understand I will be ready to participate when I say I am ready. I still somewhat resent when people continue to check in with me…just waiting for me to tell them I need to stop. My preference would be for them to just join me in participating and let me worry about when I need to stop! This is something I am working on in my own way of thinking. I know my friends and family want what is best for me and I appreciate that they care. I also understand that they sometimes feel helpless to know what to do for me. Convincing them I will let them know is not always as easy as I would like.
I have been able to participate in a lot of activities lately, though not the activity-a-day that I was once able to do. Instead, I have been able to be involved in the school drama, church youth group, extracurricular activities after school, and most importantly, spending time with friends. If I ever find my schedule getting too busy, I picture that glass of water and don’t let it get emptied too fast, or else it may take too long to refill!