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Lassitude Fatigue and MS

When I hit 30, I realized that there is a phrase most Americans repeat throughout the day: “I’m so tired.” As a woman who had a career and infant children at the time, I understood that phrase long before my MS diagnosis. I said it all the time. But, when I first realized something else was happening to my body, that “I’m so tired” phrase developed a new meaning. 

When I was working, I’d bring some of the special needs students out to the playground during recess. They depended on me to be happy, and to spend time with them. I remember the day I had to sit on the ground with my back against the building. THAT was the day my MS started. Three years before a diagnosis. Their joy depended on me engaging and being there, and I couldn’t. 

This wasn’t the casual “so tired” we all threw around. It was a crushing fatigue. I knew right away that it was not something to take lightly. So, I admit, when others would say “I’m so tired”, after they’d had a full night’s sleep, when they were not spending their lives in pain, while raising children; it seemed to just rub me the wrong way. Everyone is tired. I get that. You are allowed to be tired. That isn’t what bothered me. I’d only get upset when someone used it as an excuse to extend a deadline, or somehow get out of a prior commitment. Some of us have more to contend with in that category. I’d be so messed-up, so tired, and I’d still show up to work, meet my deadlines, and work my absolute hardest. Then I had to deal with people who’d spent the previous day walking through museums, touring around the city, and wouldn’t show up because they were “tired”. Still, to this day, I believe a lot of people who use the “I’m too tired” excuse have a poor work ethic. They are not “too tired”, they may just be too lazy. 

MS fatigue is crushing. It’s very different from normal fatigue. I remember not showering just because the energy it would take to try to get my legs over the lip of the tub was too grueling a thought, and my husband wasn’t there to help me. MS fatigue is just THAT bad. But what I didn’t realize is that there is a type of fatigue even more overwhelming: meet lassitude fatigue.

Lassitude is unique to people with Multiple Sclerosis, the cause is not yet known but there are specific characteristics that help define it separately than “basic MS fatigue”. Lassitude usually occurs on a daily basis and worsens as the day goes on. It can come and go randomly at any point in the day and usually is made worse (or started) by exposure to heat or stress. Finally, it’s said to be more severe than regular fatigue.

It is reported that 70-80% of people with MS suffer from MS Fatigue. I wonder how many of us have MS fatigue and how many have lassitude as well. 

The general definition of fatigue is; “Weariness from bodily or mental exertion”.

MS fatigue is like that, but on crack. Can I say that? I have never partaken in drugs, but it just seems like a strong enough phrase to convey how seriously overwhelming and draining MS fatigue feels. Some of that weariness you feel comes from the stress of living with the logistics of MS as well. 

Lassitude fatigue is that times ten. It’s truly awful. 

If you have MS Fatigue, you need to become a proactive planner. Plan ahead! If you are blessed to have a support system, make sure they are in place to help. Remember the “Spoon Theory” and choose wisely how you spend your energy, and who you spend it with. Everything must be proactively planned to help best manage that fatigue.

Lassitude fatigue, requires proactive planning as well, and sometimes medication. I am back on medication to help combat it. As always, knowing your options is half the battle. Be proactive, and reach out to other people in the same position. We all need each other. It is amazing what we can do, despite illness and tragedy, and not getting to “nap”. Be well my friends.

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