As a mother living with Multiple Sclerosis (MS), I’d like to share my experiences regarding fatigue, family life, self-care, and, yes, spoons. The concept of “spoons” relates to the energy one has available to tackle daily tasks, and as a parent with MS, my supply often runs low.
According to the National Multiple Sclerosis Society, fatigue is one of the most prevalent symptoms of MS, impacting both personal and professional life. It’s often debilitating even for those with minimal physical limitations. Typical causes of fatigue include sleep disturbances—often caused by bladder issues or muscle spasms—as well as emotional factors like depression. MS can also introduce a specific kind of fatigue known as “lassitude,” which is characterized by:
- Daily occurrence
- Early onset, even with adequate sleep
- Intensification throughout the day
- Increased severity in heat or humidity
- Sudden onset
- Greater interference with daily tasks compared to regular fatigue
Given these challenges, parenting a child, especially one on the autism spectrum, can be particularly draining. Most weekdays, I start off with only four or five spoons, and by evening, I often find myself completely depleted. As any parent knows, running out of spoons by 5 PM is far from ideal. There are still dinners to prepare, dishes to wash, baths to give, and plenty of other responsibilities that demand attention.
When energy is running low, how do I manage everything? While there’s no perfect solution, here are four strategies that help me cope:
- Take a Break: Before diving into chores or tasks, give yourself permission to pause. The dishes can wait—take 10-15 minutes to relax. Sometimes, a brief moment of rest is just what you need to gain a little more energy.
- Delegate Tasks: Many moms, myself included, tend to be perfectionists. If your partner doesn’t fold laundry the “right” way, let it go. They can manage, and it’s important to share the workload to preserve your energy.
- Borrow from Tomorrow: While it’s not an ideal long-term strategy, I occasionally remind myself that I can conserve energy for the next day. On busy days, I allow myself to do the minimum—leaving dishes undone or opting for leftovers. This way, I can replenish my spoons for the following day. Still, this can lead to a crash on weekends when I finally run out of borrowed energy.
- Accept Limits: On days when I simply can’t muster the energy to be a mom or a partner, I allow myself to rest. Recently, I discussed my overwhelming fatigue with my neurologist, who suggested naps and prescribed Amantadine. While naps seem unrealistic for a busy mom, I find that taking short breaks between tasks is manageable and helps me get through the day.
There are days when I wake up with a surplus of spoons—what I like to call my “Good MS Days.” Those days are precious, and I try to use that extra energy wisely, whether it’s taking my child to the park or spending quality time with my spouse. After all, it’s essential to enjoy those moments when I have the energy to spare.
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In summary, living with MS as a mother is a constant balancing act. With strategic breaks, delegating tasks, and accepting my limitations, I navigate the daily challenges of parenting while managing my health.