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The Bummer of Back to Back Days

Well, it’s here, the summer season has finally sprung (much to the chagrin of many people who have multiple sclerosis). With this season often comes vacations, day trips, BBQs, and all sorts of social activities and responsibilities.  No, this actually isn’t about the difficulties we face during the warmer temps that accompany this season.  While I want our friends and family to understand what temperature changes can do to us, I want to talk about another issue that tends to rear its ugly head this time of year. I’m talking about the difficulties we can experience when trying to do something on back-to-back days.

The price we pay for activity

For many that suffer from multiple sclerosis, there is often a price to be paid for activity (I like to call this the “MS Tax”). The nature of this being active and then paying for it cycle is one that really defines MS for many people out there. It’s also one of the reasons that inhibit friends and family from understanding our disease. We may be able to be out and about and active one day and completely laid out the very next.

What you see, isn’t what we get

People tend to only see us when we are “looking good”, putting on that brave smile no matter what we feel like inside. They don’t see us the next day, when we may be agony, lying in bed or on a couch having trouble moving. They don’t see the overwhelming fatigue that makes simply getting up to go to the bathroom seem like an impossible journey. This dichotomy between how our bodies behave one day and the way they do the next day can be just as confounding to us too. It can mess with your head when your active one day and feeling awful the next. It can also make you never want to leave the house again. Was yesterday worth the pain I am in today? I face that question all the time.

Choosing battles

So when it comes to this time of year, where so much is going on, many of us are left in the awkward position of choosing what we do and don’t do. As you might expect, that can have a tremendous effect on relationships of every kind. Going to one friend’s party on a Friday but not your other friend’s BBQ on Saturday is certainly enough to cause a strain on friendships, no matter how understanding your friends are. Because of our bodies, we are often forced to pick and choose what we do and where we go. It’s tough to make those choices, we obviously want to do everything, we simply can’t. That’s one of the harsher truths of living with a disease like MS. It sucks.

My mind is too big for my body

I’d like to say I always plan everything out well, that I choose wisely, but even after all of these years, I still don’t. I always think I can do more. It’s like when someone orders a huge meal and they say their eyes were too big for their stomach. That’s how my mind is, my mind is too big for my body. So I always end up doing whatever comes chronologically first, thinking that this will be the time I make it through a full weekend of activities. “Sure friends, I’ll see you all tomorrow!” Nope, tomorrow comes and my body won’t move. That’s frustrating, not only for me but for my friends and family too.

Educating my circle

While trying to plan my activeness better is probably the correct solution to all of this, I find I rely more on educating, or trying to anyway, my friends and family. I explain how my body has to pay this tax, how, no matter what I say, I’m not likely to make it out the next day, and that it’s nothing personal. I remind them I want to do everything and that I will try my hardest but my body breaks down. Everything I do takes much more energy than a regular person, that’s my best way of trying to explain how I may look great one day, but be absent the next. I can still be me for a period of time, but it takes a lot out of me to do that. So I look at this article as another way of hopefully educating my friends and family (hopefully yours too). I probably won’t make it tomorrow, no matter what I said, but don’t for one minute think that I don’t want to be there.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • KimmyK
    3 months ago

    You hit the nail on the head every time!!

  • Devin Garlit moderator author
    3 months ago

    Thanks so much @KimmyK!

  • Tonyh
    3 months ago

    Many thanks Devin! Your thank you was greatly appreciated. Glad I found this community

  • Chance1974
    3 months ago

    I also want to do all the normal things, but I have learned sometimes its just not worth the torture.

    I have always been the quiet guy and sort of a loner, but now its worse. I dont like people seeing me struggle and feeling their confusion or pity, so I just stay in my own world mostly.

    In this most people have given up on me and dont bother even asking me

    But when there is relief i will jump in the Jeep and head for the beach or the mountains.

    I always fear the times that may never allow me to have at least part if the life I used to have…

  • Devin Garlit moderator author
    3 months ago

    Thank you @Chance1974, it’s such a fine line, deciding whether the torture is worth it. It’s important to keep taking that risk though, it’s important to keep living as best as you can.

  • Legsonstrike
    3 months ago

    Another great article Devin, sometimes I’m at a loss for words at so we’ll you can write about what we deal with!! I committed to keep my 3 year old granddaughter this weekend and I can’t tell her no so I know I’ll pay for it by Sunday I’ll be in the bed for days!! Joy joy joy!!

  • Devin Garlit moderator author
    3 months ago

    Thanks so much @Legsonstrike and @messeeone, very much appreciate you folks sharing your thoughts!

  • Shelby Comito moderator
    3 months ago

    How sweet of you to take care of your granddaughter for the weekend @legsonstrike, especially when you know how much it will take out of you. No one understands that better than this community! We’ll be thinking of you and hope you enjoy many sweet moments with your granddaughter this weekend.
    – Shelby, MultipleSclerosis.net Team Member

  • messeeone
    3 months ago

    I was going to put this aside to read later, because I (and my friends and family) am so familiar with MS tax, spoon theory, etc. by now. But you did it again, Devin, using words to so accurately illustrate when our minds are “too big for (our) body.” It’s as if MS chastises us if we get too big, thinking we can figure out a way to do everything. Alternatively, we withdraw completely, telling ourselves “why try?” Trying to maintain this fine balance can be exhausting in itself! I’ll be sharing this to, once again, “educate my circle.” Thanks.

  • Tonyh
    3 months ago

    I can relate to your story. I think about the sadness and sometimes depressed emotions I feel because I just can’t do as much as I planned or thought I could.

  • Devin Garlit moderator author
    3 months ago

    Thank you @Tonyh, I know those feels all to well myself. Hang in there, you aren’t alone!

  • Lupe
    3 months ago

    Spot on! Thanks!

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