My muse (John ❤) is sitting next to me, Planning, typing away, and clicking his mouse. Meanwhile, I’m trying to stay focused, trying to continue without isolating myself with headphones, trying to accept myself and my feelings, and planning the next days.
Wearing headphones feels a bit isolating because I already feel like I live miles away from everyone else, lost in my thoughts most of the time. Blocking out the noise around me can sometimes be great, but it also makes me feel a bit lonely.
I’m writing this piece today with a tired body and an exhausted mind. I didn’t even exercise or race during the rowing event we recently held, yet I feel as if I’ve lost the race. But at the same time, I feel as proud as if I’ve won because it was such a great event.
Unfortunately, I realize I’ve worn myself out during this volunteer work for the event’s operations and assisting where needed. I see now that my effort to ‘keep it silent while struggling’ was a mistake..
What do we say—“we’re stronger together,” right? … (Picture the gif of a tailor who can’t mend his own clothes. This is a Turkish saying, similar to ‘The shoemaker’s children go barefoot,’ meaning that sometimes, even experts can’t solve their own problems.)
I’m here to talk about “MS and Fatigue.”
I’ve had MS since 2013. I’ve usually managed the process calmly and taken care of myself. But I don’t recall ever being this tired in my MS journey. Before, I used to push myself to the limit, helping out wherever I could, always on the go. After my diagnosis, I embraced a quieter life.
This has been an awakening for me. I am not blaming anyone or anything. It’s comforting to have learned my limits while working among friends, something I might have had more difficulty learning with strangers.
As I write about MS and live in my little “bubble,” I realize how much I’ve missed out on. I’ve never actively avoided experiences; they just didn’t come my way. And let’s not forget, I’m an introvert. I guess I’ve unconsciously passed up opportunities so far.
It seems I needed to experience firsthand how many tasks that seem easy for everyone else can leave me stranded on the side of the road, like a bike with a flat tire 🙂 Even if I planning everything…
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And if you tend to stubbornly keep going like me because of the plans, that bike with a flat tire can quickly become unusable. I knew myself, I saw that I was getting tired. But telling myself it was “necessary” led me to this inevitable need for a break.
Ultimately, I reached a point of acceptance, but that didn’t mean “stopping,” because a Virgo never quits until the job is done. (Of course, I’ll blame my zodiac sign—who else would I blame? Myself? Pff…)
The signs were clear when I couldn’t comprehend, hear properly, or process information; there was no denying that a mandatory break was necessary. Instead of letting things go downhill, I decided to step back and watch the event unfold with pride.
Now, it’s time to rest — really rest, truly rest without planning!
But even though I know it’s not my responsibility and everyone is aware that I’m in “forced rest mode,” my internal worries about the responsibilities I feel persist.
I write as if all this happened in the past. Still, honestly, this is just a way of gradually shutting down the alarms inside me (insert winking emoji..)…
Bringing these anxieties to the surface and hearing them with my own ears brings tears to my eyes. Still, I recognize their futility, and then I pull myself together. (Thank you, John, for your unwavering support, always listening, and quickly adapting to every situation. I’m so grateful for you. By the way, happy anniversary to us!)
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And now it’s time to shut off all the alarms, take the bike in for maintenance, and change the tire, and no planning! Some of the ways I do this might seem funny to you—like playing on the PS5 and definitely writing!
I even did some drawing yesterday. While doing it, I created a story, and when I saw the result, I thought, “Ah, that’s me!” I’ll explain.
The Story of My Drawing: You know how I sometimes mention wanting to do some drawing on the Ipad? Everything was ready, and the Ipad was waiting for me to start. I picked it up, opened the app, and I came across one called “Flame…” while exploring the brushes. And didn’t resist the urge to draw a flame right away. I picked a color (the dark red-burgundy you see) and drew the flame’s edges. It didn’t really look like a flame, so I tried to make it more flame-like with another shade of red.
My attempt at drawing a flame still wasn’t successful, but it started to look like a “bud.” So I thought, okay, this is going to be a BUD. I changed the colors of the same brush to create the background, and as I worked, I noticed the bud was disappearing. It was getting lost in the crowd. So I had to bring it out by adding some white around it. I had to give it space…. Remove it from the chaos…. (The “Ah, that’s me!” moment happened here.)
Find The Milestone!
I realize that this phase of my life has been a milestone in my relationship with MS, and I accept it. No matter how well I eat, how much I take care of my mental health, and despite still neglecting my physical health (lack of exercise, etc.), MS has its own journey. The best thing I can do is live at a pace that feels comfortable. Staying healthy should always be the first step.
I see that I need to take holistic health more seriously and not just focus on nutrition, but also physical health, mental well-being, and work-life balance.
In the next phase, I need to prioritize rest for a while longer and find out where I was before all this hustle began. I’m confident that with slow and steady planning, I’ll get back on track.
Q&A’s
What are the symptoms of MS fatigue? MS fatigue presents as both physical and mental exhaustion. Symptoms may include muscle weakness, extreme tiredness, mental fog, and a general lack of energy.
How can MS fatigue be managed? Managing MS fatigue involves getting enough sleep, incorporating regular light exercise, maintaining a balanced diet, and planning rest periods throughout the day. Regular check-ins with a neurologist are also key.
How is MS fatigue different from regular fatigue? MS fatigue is much more severe and disruptive compared to regular tiredness. It often does not improve with rest and can feel like an overwhelming depletion of energy, specific to the condition.
How do I explain MS fatigue to others? MS fatigue can be described as a level of exhaustion that goes beyond typical tiredness. Even simple tasks become incredibly draining, and it differs significantly from normal fatigue.
What treatments help with MS fatigue? Neurologists may prescribe medications to help manage fatigue. Additionally, increasing energy levels through regular physical activity and dietary adjustments can also be effective strategies.
