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Overdrafting the Energy Bank

A while back, I talked about the MS Tax, the price that people with Multiple Sclerosis often pay for being active. More and more people I know have begun to grasp the idea that I may be out of commission the day after doing my best impression at being normal. However, many people still don’t realize just how long it may take me to pay up, or what the consequences are. I’m here to remind folks that the “day after” being active might actually turn into multiple days and have a huge impact on my day to day life. Facing the prospect of paying up for several days can make decisions to leave the house quite difficult.

Of spoons and banks

Life with MS is taxing, especially once you’ve had the disease for a while. People love to use the “spoon theory” (where each minor action is a spoon and you have a finite number of spoons to use each day) to describe what life with MS is like. Whether you think of it as spoons or as simply a bank of energy, we do seem to have a limited amount on most days. Picking and choosing how to use that energy can be extremely difficult. I often feel like on most days, if we are leaving the house or even being especially active around it, we end up borrowing from our energy stores for the next day. That leaves us in a spot where we may get something done one day, but we have to pay it back the next. Borrowing energy from tomorrow can lead to then borrowing energy from the day after that, and so on. It doesn’t take much for this cycle to put you in a hole, where you’re left with not much energy to do anything at all.

Tough decisions

I think some folks don’t quite understand how little I actually leave my house. They see posts on social media or see me in person and I look fine. If I’ve left my house though, I’m probably already borrowing spoons from the next day. Just showering, taking care of my dog, and well, just generally taking care of me depletes me. By the time I’m out of the house, I’m likely already on borrowed time, meaning that the next couple of days are probably going to necessitate me laying on the couch or even in bed. This is another big reason why I rarely travel places in what might end up being multi-day trips.

Extra critical of what I choose to do

All of this makes me extra critical of what I choose to do and when. I’ll have friends reach out to me about an impromptu dinner or happy hour and have to come up with an excuse to say I can’t come out. Usually, I say I’m not feeling well. The truth though, is that I may be feeling fine, but I have to think ahead. Do I have plans several days from now? Going out today will certainly have an effect on those plans. I even have to think about the little things, like will I need to shower before I go out? Will I have someone to walk my dog tomorrow morning (if I don’t, then I can’t risk going out, for his sake)? For me, spontaneously making plans is pretty much a no go. I’ve got what may seem like the most minute plans set for my week.

Small actions can have big consequences

The key to all this, that I think people grapple with or forget, is that small actions can have big consequences for someone with a chronic illness. The minor, everyday tasks that most people take for granted are the ones that steal most of our energy. Those are the reasons you probably don’t see us as much as you’d like. Those are the reasons why we end up canceling so often. Sure, I can probably make it out and have a quick beer with my friends, but if I do that, who’s going to feed my dog tomorrow? Who’s going to feed me? How will the trash get out? The dishes done? There is no such thing as a minor chore for many people who have MS or other chronic illnesses like it.

Thanks for reading!


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  • JWilson
    7 months ago

    Thank you for this post. It has helped considerably. I have been a caregiver for my wife since she was diagnosed with MS shortly after we got married almost 30 years ago. By far, the biggest struggle has been her fatigue. She learned to adjust to her fatigue way before me, even though she still struggles with it every day. While I followed her lead, in the back of my mind I always wondered if I should be trying to motivate her to get out and do more things. I thought if I could do this more effectively, she would have a better life.
    Despite her health issues, she also has been through several serious bouts of cancer, my wife is one of the happiest people I know. She has learned to appreciate the little things and taught me how to as well. It is hard to watch the world go on without us, but even harder when I feel others don’t understand why are lives aren’t as active as theirs. While I don’t wish bad things for anyone, it helps to know others have to deal with the same struggles. I can relax a little and save my emotional energy for dealing with the daily problems for which I can be useful.

  • Devin Garlit moderator author
    7 months ago

    Thank you @JWilson, I’m so happy that this was helpful for you. Fatigue is the hardest thing for those who don’t have MS to understand, it’s probably the symptom that has the greatest effect on on those suffering it too.

  • Dede74
    11 months ago

    Devin, you have done it again! I was just explaining to one of my friends the other day how in the morning I run like a gas tank. Most of my mornings my gas tank is full and ready to go on good days. Other days I wake up completely empty and cannot get going. This article explained exactly what I was trying to explain to her, I showed it to her and now she understands completely! Thank you so much, because it is so much easier to explain the symptoms we have when so many of you write these articles that we can relate to!

  • Devin Garlit moderator author
    11 months ago

    Thanks so much @Dede74 , I’m happy to hear that!

  • chong61
    11 months ago

    You certainly have a grasp on your articles that always makes me know finally someone understands. No matter how much my children love me, they don’t understand.

    Had a appt. with the glaucoma doc this week. My son drove me, but just the drive and then the process of my eyes wiped me out yesterday and today.

    They want me to go out and eat and when I
    don’t, they think it is by choice and yes it is by choice. I want to be able to at least shower the next day. I suppose this ages me but I always heard “walk a mile in my shoes” and then you will understand.

    Thanks again Devin, I find myself always searching to see if you have a new article.

  • Devin Garlit moderator author
    11 months ago

    Thank you @chong61! I really appreciate that!

  • messeeone
    11 months ago

    All day today, which didn’t even start until I got out of bed around noon, I have been second guessing every one of my actions because I am going out to dinner with my dad tonight. How do I make the most of this special occasion, one which, as my dad gets older can no longer be taken for granted? I’ve been “extra critical of everything I do and when… small actions can have big consequences for someone with a chronic illness”. Thanks for getting it, again, Devin!

  • Kim Dolce moderator
    11 months ago

    Devin! Very well-explained, thank you for that. I don’t even try to explain that stuff to people anymore; now I don’t have to, I can just direct them to this piece! –Kim

  • Devin Garlit moderator author
    11 months ago

    Thanks so much Kim!

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