With MS, You’re Going to Need Rest, and That’s OK!

When you live with MS, one thing is certain: you’re going to have days where things just aren’t going to happen the way you want, or even at all. As we transition to the warm summer months with many of our friends taking part in fun, often outdoor, activities, our bodies will remind us that we are not the same as everyone else. Warmer weather, crowded situations that overload our senses, and increased fatigue are going to wreak havoc on us; you really can’t escape it, but I’m here to remind you all that that’s OK!

The summertime is tough

The summertime can be one of the toughest times for someone suffering from multiple sclerosis. While the summer is often a time that people look forward to, I tend to cringe at the thought of it. The effects of heat on those with multiple sclerosis has been covered a lot. But I do wish to remind folks that it’s not just high temps, but high humidity that can hurt us and exacerbate even our most dormant symptoms. Even quick temperature changes (like going in and out of air conditioned rooms to non-air conditioned rooms) can knock us out of whack.

Making and breaking plans

Over the next couple of months, chances are high that I’m going to be laid out often (and I don’t mean in the sun to get a tan, that would pretty much be the worst thing for me). I’m going to make many plans to see friends and loved ones, and then end up breaking them a lot of the time. There isn’t much I can do about that. MS is such an unpredictable disease that trying to plan anything in advance can be very troublesome. What may seem like the most minute of triggers, even on the day of an event, can leave me stuck home on the couch or in bed while everyone’s out enjoying the fun.

Time to rest and recharge

Sometimes, even if the weather is awesome, I’m going to need recovery time from something I did previously (maybe even just showering), and it may take more time than I expected. Needing time to rest and recharge is something that I don’t think gets discussed much but is vital. Some time resting in a nice climate-controlled room is a must for me. But again, that is going to take me out of commission while other folks are out and about.

It’s okay to be home and resting

With so many people we know out doing fun summertime things like going on vacation, going to the beach, enjoying outdoor festivals, etc, it’s easy to start getting depressed or feeling lonely. The fear of missing out is something I get often and seeing everyone having a blast on social media while I’m stuck at home can be rough. To help fight all this, I like to tell myself that it’s ok. It’s ok to be home and resting. I try to remember that it’s important to focus on myself. But I also try to think of it as preparing more for the next time.

We’re different

We’re different than others and require more rest. There is no shame in being different. Are we going to miss out on a few things? Sure. But we’ll miss out on them so we can participate at a different time. And that’s ok. I like to think of a quote by General Oliver P. Smith, commander of the 1st Marine Division in the Korean War. During the Battle of Chosin Reservoir, when forced to pull his troops back in order to save them, he said “Retreat, hell! We’re not retreating, we’re just advancing in a different direction!” That is exactly how I try to look at my situation when I have to step out and not join in the fun all around me. Instead of focusing on the sad part of it, I try to look at it as a positive, I’m just getting ready for the next battle, um, I mean fun time. Stay cool, rest up, and don’t beat yourselves up my friends!

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Comments

View Comments (8)
  • B.L.
    3 years ago

    I am SLOWLY learning to do this without getting angry ; I remember just a few years ago , I could go to the beach and tan all day outside; now I have to force myself to have “rest” days in our GA heat and humidity – I simply cannot even walk outside during the day without flaring up. I remember from last summer vaguely (cogfog) that I began having narcolepsy after being outdoors only for a few minutes. This year, it seems to be 10 times worse- it honestly does! I banned all other social media from my life a couple of years ago for a total other reason; but I do not think I could handle seeing people out having fun while I’m stuck inside feeling like an 80 year old; it feels SO much better to know that just taking a shower can be a recouping activity for someone else too tho! Although, I wud never wish this on anyone! OMG! I was beginning to think I was nuts or something! But literally, I cannot even use warm water, and it takes me an hour, after I get dressed and “ready” it’s usually a 4 or 5 hour task! And this used to take me 20 minutes tops ! Luckily I am an only child , so I am used to being alone all of the time from my childhood, after my divorce it was really hard because I had been married for my entire adult life; but these past 2 years , I have really learned how to do better with the rest and me time/ not to say that it doesn’t suck and somedays I just bawl my eyes out bc of the loneliness , but just knowing that I am not “crazy” bc of the heat and the overwhelming fatigue it brings on , makes me feel a bit more human again. And reading all of yalls posts when I can, helps me out a lot! Thanks so much and I hope you all stay cool and rested up as well!

  • Devin Garlit moderator author
    3 years ago

    Not getting angry is tough (and you are right, social media makes it so much worse sometimes!). Definitely be careful in the heat, it’s so hard on those of us with MS. It can turn a decent day into one of the worst ever in a manner of minutes. So you are certainly not crazy, it’s many of us! Thanks so much for reading and sharing your story!

  • Azjackie
    3 years ago

    I enjoyed your article and the quote was great. I needed the reminder it is OK. I start feeling guilty with rest. There are so many things I feel I should be doing, doing better, or missing out.

  • Devin Garlit moderator author
    3 years ago

    Thank you! I feel like I need that reminder so often myself!

  • Carroll
    3 years ago

    We had a family gathering this past weekend, it took two days to prepare for it and three days to get over it. I was diagnosed with MS 14 years ago and probably had it a lot longer than that but it has really taken its toll on me the last 8 years and I have learned, sometimes the hard way, that it takes a lot of rest for me to function and that this is perfectly ok. I really enjoyed your article and know exactly how you feel.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading and sharing your story. I think people forget that sometimes we aren’t even talking about one day of rest from an event but multiple days!

  • 105bvmf
    3 years ago

    I went to the beach in the Spring last year. The temperature was in the lower 70’s. I could not take the heat for more than 10 minutes. Walking, especially through the sand was almost impossible. I felt I ruined my family’s vacation, because they weren’t able to enjoy their vacation for worrying about my health.

  • Devin Garlit moderator author
    3 years ago

    That is always a tough situation. Walking a lot, especially though sand can be especially hard no matter what the temperature. Always remember that it’s not your fault and that your family probably understands better than you realize! Thanks so much for reading and sharing your story!

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