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3 Ways My Tired Is Different from Your Tired

By Jessie Ace
March 23, 2021

MS comes with lots of different challenges to face – symptoms often being the biggest challenge. In fact, MS could also stand for “multiple symptoms.” The most frustrating symptom – in my opinion – is fatigue.

Fatigue can be a nightmare for most people living with MS. It feels like doing three marathons back to back with the flu in your sleep. You can get out of bed first thing in the morning after a solid 10 hours and immediately feel like you’ve not slept in a week.

Frustrating, especially when you have plans, a life and a family to care for. I find fatigue is extra challenging being self-employed and working from home. It means that I have to be clever in my approach to the work I can do at all times in case I wake up one day having an MS day.

The one thing I find the most annoying though is how other people see fatigue.

I’m here to clear up a few things about how our levels of feeling tired are not the same as healthy people.

1. “Just take a nap”

Taking a nap isn’t the answer. This is one I get all the time. They’ll say something like, “Well, if you’re tired just go and lay down for a while and have a nap?” They can’t get their head around the fact that it’s not that simple. Don’t get me wrong, I would LOVE it to be that simple. I really would. But it’s not the answer. If it was, I would just go take a nap. And don’t get me wrong, I do. When I was new to the MS world, I napped. And napped. And napped.

What helps me more is planning out my energy. I have a very strict fatigue management system (I realize that sounds boring AF but it is, indeed, MS life goals). And there’s a saying my friends and family now know which is, “guys, if it’s not in my calendar it’s not happening.” I do find that the people closest to me are now respecting my time much more because I’ve taught them well.

2. “I’m tired, too”

How many times has someone said this to you? This is one that really grates on us who have chronic fatigue. Don’t get me wrong, I get it, people want to feel like they can relate to us. But please understand that your long day is different from our chronic health condition. When situations like that happen, I just smile and nod. I’ve done the whole “explaining my condition” thing, and by the next time I see them, they’ve forgotten all about it and say the same thing anyway. Now, I just save my energy and bite my tongue.

What people also don’t understand is that sometimes fatigue is also caused by the side effects of our medication. I know from being on Tecfidera that one of the most annoying side effects is the drowsiness halfway through the day. It feels like someones pulled out a plug and allowed the energy to just run out.

3. “But you did it last week?”

This is another common one from people who don’t understand how this chronic illness thing works. Chronic conditions like multiple sclerosis FLUCTUATE. Meaning somedays I can do a certain thing and other days I can’t. It changes day-to-day, hour-by-hour. It doesn’t mean I don’t want to do this thing with you, it doesn’t mean I’m being rude, it means that today I am struggling and I don’t feel able to commit that energy to you.

I managed to confuse a lot of people when I started running. I think the most amusing facial expression came from my dad when we finished a 10k race and I collapsed in his car. He looked genuinely concerned. He didn’t believe me when I said I wouldn’t be able to do anything afterward. I slept for about the next two days (I had definitely not trained hard enough).

Fatigue, I find, is a constant battle between living how you want to live but then not living too much so you’re not able to do anything the next day.

How tired are you today?

Editor’s Note: Visit the National MS Society website for more information and resources on fatigue.

Jessie Ace

Jessie Ace is the founder of jessieace.com, a website that provides real-world help and advice for people living with chronic health conditions after her own experiences of being diagnosed with MS at 22 years old. She’s also the host of the DISabled to ENabled podcast, author of the ENabled Warrior Symptom Tracker book, founder of the ENabled Warriors community and public speaker. 

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