As a mother living with Multiple Sclerosis (MS), my daily life is a mix of challenges, fatigue, and the joy of parenting. Let’s dive into what it’s like to juggle motherhood, self-care, and the reality of MS fatigue—yes, fatigue, and yes, I’m talking about spoons.
According to the National Multiple Sclerosis Society, fatigue is one of the most prevalent symptoms of MS. It can severely disrupt one’s ability to function at home and work, often leading to early exits from the workforce. MS fatigue is not merely tiredness; it can be crippling for those who may not have significant physical limitations otherwise. This type of fatigue, known as “lassitude,” is unique to MS and has some specific characteristics:
- It generally occurs daily.
- It can strike even after a good night’s rest.
- It tends to worsen throughout the day.
- It is aggravated by heat and humidity.
- It can appear suddenly and is usually more intense than typical fatigue.
- It often interferes with daily responsibilities.
With this understanding, it becomes clear how raising a child—especially one on the autism spectrum—can be exceptionally tiring for someone with MS. Most days, I start out with only four or five spoons (a nod to the spoon theory). By the time evening rolls around, I’ve used them all up, leaving me with nothing left to give.
Being out of spoons by 5 PM is simply not an option for a mom. Dinner still needs to be made, the kitchen cleaned, baths given, and pajamas wrestled on. There’s still playtime to enjoy, laundry to fold, groceries to shop for, mail to sort, and bills to pay. Oh, and you probably should shower too. So, how do you manage all this when your energy tank is empty? Here are four strategies I try to follow when I’m running low.
1. Take a Seat
Before diving into tasks, give yourself a break. Forget about that pile of dishes or dinner prep. Allow yourself 10-15 minutes to just breathe. Pop on some cartoons for your little one and take a moment on the couch. That small pause might just give you an extra spoon.
2. Divide and Conquer
Many moms, myself included, tend to be Type A personalities. Yes, your partner could help with the laundry or dishwashing, but maybe they won’t do it your way. Who cares? If they hang your leggings (seriously, who does that?), it’s not the end of the world. Let it go; they can handle it.
3. Borrow Spoons from Tomorrow
This tactic isn’t perfect and can lead to a cycle of fatigue (think of it like those cash advance places), but sometimes it’s necessary. On particularly demanding days, I remind myself that tomorrow I’ll take it easy. Dinner might be leftovers, and the dishes can wait. I aim for the bare minimum to recharge. But be warned: you might find yourself borrowing spoons for days, and when the weekend arrives, it could hit you hard. That’s when I tend to cancel plans.
4. Acknowledge When You Can’t Do It All
There are days when I simply cannot. I need pajamas, bed, and a binge of my favorite show. And you know what? That’s perfectly okay. I recently opened up about my extreme fatigue to my neurologist after almost dozing off while driving. He prescribed Amantadine (Symmetrel) and suggested more naps, which made me chuckle—not exactly feasible for a mom of an autistic child with a full-time job.
While naps might not be realistic, I can manage short breaks between chores. My 4-year-old may not love it, but sometimes those moments are crucial for my evening survival. Oddly enough, I find that leaving the house for a chaotic trip to Target requires less energy than managing bedtime at home.
On brighter days, I wake up with a few extra spoons—those are the “Good MS Days.” I wish I could save that energy for later, but it doesn’t quite work that way. You have to use it or lose it. So, skip the yard work and take your kid to the park or enjoy a date night with your spouse. They deserve it, especially when they’re the ones who support you on your toughest days.
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In summary, navigating motherhood with Multiple Sclerosis is an ongoing balancing act of managing fatigue and responsibilities while ensuring self-care. Embracing breaks, delegating tasks, and recognizing personal limits are essential strategies for sustaining energy and maintaining a fulfilling family life.
Keyphrase: Parenting with Multiple Sclerosis
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