I'm A Mom With Multiple Sclerosis, And This What It's Like

by Lisa Marie Cheney
Lisa Marie Cheney lying on fallen leaves with her husband and son
Lisa Marie Cheney

Let’s talk about multiple sclerosis fatigue, family, self-care, and spoons.

Yes, spoons.

The National Multiple Sclerosis Society describes fatigue as one of the most common symptoms of multiple sclerosis (MS), stating it can significantly interfere with a person’s ability to function both at home and at work, and it is one the primary causes of early departure from the workforce. They explain that MS fatigue can be debilitating, in and of itself, for a person with multiple sclerosis who otherwise has minimal physical limitations.

In addition to common sources of fatigue (sleep deprivation due to bladder dysfunction or nocturnal muscle spasms, depression or simply expending considerable effort just to accomplish simple daily tasks) the MS Society’s website describes another kind of fatigue — referred to as “lassitude” — that is unique to people with MS.

Characteristics of this type of MS fatigue are as follows:

  • Generally occurs on a daily basis
  • May occur early in the morning, even after a restful night’s sleep
  • Tends to worsen as the day progresses
  • Tends to be aggravated by heat and humidity
  • Comes on easily and suddenly
  • Is generally more severe than normal fatigue
  • Is more likely to interfere with daily responsibilities

With that said, you can understand how raising a child, particularly one on the autism spectrum can be exceptionally exhausting for an individual with Multiple Sclerosis. 4 out of 5 days per (work) week, I’m down to 4 or 5 spoons before I even walk out the door (you’ve heard of the spoon theory, I assume). And by the time I get home, I’m completely out – I have nothing left to offer.

As a mother, being out of spoons by 5 pm is completely unacceptable. You still have to get dinner on the table, clean up the kitchen, give the kiddo a bath, and wrestle him into his pajamas. There is still “special playtime” to be had, laundry to be folded, and groceries to be purchased. There’s mail to go through and bills to pay and, crap, you should probably take a shower at some point.

But how are you supposed to do all of these things when you’re completely out of spoons? This is by no means a fool-proof guide, but here are the four rules I try to follow when I’m running on fumes.

First, sit down. Before you do anything at all, take a break. Let go of the fact that there are dishes in the sink and you haven’t started dinner. Let the mom guilt slip away for 10-15 minutes, fire up some Paw Patrol for your tiny human, and just sit the eff down. That 10 minutes of couch time might just earn you one more spoon.

Second, divide and conquer. Lots of moms I know are self-proclaimed Type A personalities (myself included). Yes, the spouse could put away the laundry or load the dishwasher, but he (or she) won’t do it the right way (aka, your way). Who cares? So he hangs your leggings (who does that?) instead of folding them – it isn’t the end of the world. Let it go. They are fully competent and capable.

Third, borrow spoons from tomorrow. This isn’t ideal, and it can become a never-ending cycle (sort of like those sleazy Cash Advance places), but sometimes you just have to do it. On particularly busy days, I try to remind myself that tomorrow, I’m doing nothing. That’s what gets me through. Tomorrow’s dinner will consist of leftovers or something out of the crock pot. Dishes are going to sit and the kiddo doesn’t need a bath. I’m not going to make a Target run and I’m not going to change the sheets. I am going to do the bare minimum, so I can replenish my supply of spoons. This doesn’t always work out the way I want it to, but I try. Some weeks I’m borrowing spoons for multiple consecutive days and when the weekend finally arrives, I crash. And it’s ugly. This is usually when I’m calling you and cancelling our plans.

Finally, admit defeat. It’s rare, but it happens. There are days when I just can’t. I can’t mom, I can’t wife. I just need pajamas and bed and Grey’s Anatomy on Netflix. And that’s okay. I finally brought up the extreme fatigue to my neurologist at my most recent visit. Considering I’ve almost fallen asleep at the wheel multiple times (on my way to work), I thought it might be time to voice my concerns. He prescribed Amantadine (Symmetrel) and suggested I start taking more naps. This was the first time in my life I’ve ever actually laughed in a doctor’s face, and I felt pretty bad about it, but come on. Naps? I’m mom to a child with autism who works a full-time job outside of the home – when exactly am I supposed to squeeze in a snooze?

While a nap may be out of the question, a 10-minute break is doable. In between each activity or household chore, I try to take a time out. My impatient 4-year-old isn’t a huge fan of this, but mama has to do what mama has to do. Sometimes, these little breaks are necessary to get me through the evening. And sometimes, when I’m running low on energy, actually leaving the house to wander aimlessly around Target takes up significantly fewer spoons than staying home and handing the bedtime routine. It’s okay to admit that. It’s okay to take time for yourself.

Alternately, there may be days when I wake up with a few extra spoons. Those are the “Good MS Days.” I wish I could tuck that extra energy into my pocket and save it for a rainy day (or maybe an upcoming special event), but it just doesn’t work like that. You have to use them or you lose them, and that extra burst of energy is so incredibly precious, so be sure to use it wisely. Skip the yardwork and take your kid to the park! Or drop the kid off with a family member and go on a date with your spouse! You’ll be glad that you did, I promise. Afterall, these are the people who put up with you when you’re fresh out of spoons, so don’t they deserve a little extra when you have more spoons to give?