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  • AleksaMindOverMyelin

The Other “F-Word”…

I’ve been dropping the F-Bomb a lot lately. Most of the time, in the afternoon after a particularly long day; often times when I make it to the top of the stairs, entirely forgetting what I went up there for. The first time I dropped the F-Bomb in front of the kids, I had to explain what it meant but it has since become part of their basic vocabulary. Nooooo, I’m not talking about THAT F-Word, I’m talking about FATIGUE!

I’ve been tired before. I’ve been sleepy. But never have I ever felt this level of exhaustion, this drained, this beat! I feel as though I’ve been on a week-long party circuit, out until 4am night after night, dancing in different clubs and drinking in every bar in town all the while having insane jet lag. Obviously, this example is not reality, thanks to Covid (and also maybe the fact that I’m in my 30s, with a family and one night out means I’m hungover for like, 3 days). But seriously, this is what my fatigue feels like.

“Just go to bed earlier!” “Have another coffee.” “Try reading before bed to relax!” Yes, yes. Great suggestions - however it really doesn’t make a difference. I could have the most blissful sleep of my life; the “dream of Gerard Butler making me a cup of coffee and then whisking me away in our private jet to a hut over the water in Bora Bora” kind of sleep. I will wake up refreshed and regardless of that awe-inducing sleep, halfway through the day I’ll be zonked. Kaput. Finito. Sorry Gerard.

Fatigue is actually the most common symptom of MS - occurring in about 90% of people with MS. It’s actually the most notorious symptom in patients who, for the most part, are not limited physically or have no major activity implications due to MS. Why do people with MS experience such a great amount of fatigue? We don’t know. Cool… so, so helpful! There are a few theories, however. Firstly, a higher level of cytokines (chemical messengers) are found in patients with MS which is related to the overall activation of the immune system. This ends up feeling like you have a cold or a flu all the time (which, as we know, makes you feel like a pile of sleepy garbage). A second theory is that when you have MS, your brain has to work harder and use up more energy to complete a task. Basically, imagine two cars driving the same distance but one is carrying a load of bricks - it’s going to take a lot more gas for that burdened car to get to its destination. The other theory is that MS can reduce the communication in the brain, therefore causing fatigue. Whatever the reason is, it sucks!

Fatigue doesn’t have to be just “feeling tired”. It can be physical fatigue - thanks to muscle spasms, physical disturbances and decreased physical activity levels. It can be mental - depression and anxiety. Fatigue can also be thanks to the amount of effort it takes to complete regular daily tasks like getting dressed, taking a shower or making dinner. There is actually a really fun term that refers to the fatigue that patients with MS experience - Lassitude. No, this isn’t a word I made up for a teenage Scottish girl’s manner. It’s essentially a word that differentiates MS fatigue from regular fatigue. How does it differ? Lassitude usually occurs on a daily basis, happens even if you’ve had a great sleep (Gerard or sans Gerard dreams), gets worse as the day goes on, pipes up when it’s hot and humid and is usually so severe it can interfere with daily activities.

The annoying thing is that my fatigue (or lassitude) means I usually need to sit or lay down but I won’t be able to fall asleep. Normally, to fix “tired”, you’d think you go and have a nap…. Ha - Wishful thinking! Why should it be so easy? So, I sit in this foggy state not really able to do much because I just can’t muster up the energy, but not being able to fall asleep either; this is where my binge watching of Netflix has come in. It’s like a trance - a very sleepy trance. Actually, I kind of feel like a sloth by the afternoon. Everything takes a bit of effort, I move slowly and it takes me a bit to answer sometimes because I have to really think about whatever was just asked of me. Just a tall blonde sloth over here hoping my second cappuccino of the day will kick in.

Apart from being annoyed that no amount of caffeine makes a difference, I get worried that the people around me will think my fatigue is an excuse for being lazy, not trying hard enough or even being down and depressed. I can assure you, I am none of those things (as much as I do love a good lazy, rainy day). I try super hard for my family and everything they need, I try hard for my friends and making sure they know they are valued and supported, I try hard for my work to not let them down and give them my very best. It’s definitely been an adjustment from saying “yes” to almost everything, to knowing my limits and saying “not now” instead. Understanding what I can handle has shed new light on what I value, because I just can’t give the same effort and energy as I did before. I have to weed things out - prioritize.

So, what can I do to help my fatigue? I love lists - I always carry a note pad around so I can write things down and organize the priority or sequence of what I need to do. Start with the most important things (when I have more energy) and leave the minor things for later (in case I crash and need to rain check those items). Although it seems backwards, staying social is super helpful for me! Having a chat with a friend over coffee (or wine), is a great way to keep my mind from remembering how tired it is - it’s a perfect distraction! And who doesn’t love laughing and chatting with a friend? It’s a great boost of fun even if you aren’t battling fatigue! Hmmm, what else? Well, trying to prevent fatigue in the first place is helpful. Even if a great sleep doesn’t keep my afternoon fatigue at bay, it definitely doesn’t hurt to be a bit proactive! And if all else fails, no shame in the nap game. Oh geeze - my fatigue must be setting in, terrible rhyming lol.

So, with that terrible sentence, I’m off to make another coffee, relax with a book on the couch and maybe drift off for a little nap. Gerard, start the jet, we’ve got tropical islands to visit!

Kudos to the National Multiple Sclerosis Society for the info on why I've become a sloth!

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Dec 02, 2020

Thank you for sharing & I love u sloth and all! Xo you’re truly amazing!


Dec 01, 2020

You’re such a trooper! Also, a) you’re an amazing friend (too good) and b) maybe we should start day drinking?

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