How to Make the Most With the Spoons You Have

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). They state that 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, 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:

1. Generally occurs on a daily basis.

2. May occur early in the morning, even after a restful night’s sleep.

3. Tends to worsen as the day progresses

4. Tends to be aggravated by heat and humidity.

5. Comes on easily and suddenly.

6. Is generally more severe than normal fatigue.

7. Is more likely to interfere with daily responsibilities.

With that said, you can understand how raising a child, particularly one with extra needs, can be exceptionally exhausting for an individual with multiple sclerosis. Four out of five days per work week, I’m down to four or five spoons before I even walk out the door. 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 p.m. 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 I’ll give you what I’ve got:

Step One: 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 f down. That 10 minutes of couch time might just earn you one more spoon.

Step Two: Divide and conquer. Lots of moms I know are complete “control freaks” – self-proclaimed Type A personalities, if you will (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 (your way). Who cares? So he hangs your leggings instead of folding them – it isn’t the end of the world. Let it go. They are fully competent and capable.

Step 3: Borrow spoons from tomorrow. It sucks, and it can become a never-ending cycle, 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 kid 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 people and canceling our plans.

Step 4: 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 OK.

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 a medication 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 a mom 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 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 handling the bedtime routine. It’s OK to admit that. It’s OK to take time for yourself.

On the flip side, there may be days when wake up with a few extra spoons. For me, 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 yard work 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. After all, 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?

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