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A person flying away in a hot air balloon that is shaped like a brain.

The Importance of Getting Away

When people ask me for tips on living with multiple sclerosis, I jump to the really common ones, like finding a good MS specialist, getting on a disease-modifying medication, and starting to take better care of their body. Another important piece of advice I like to give them is to remember to get away from the disease. As someone who has difficulty traveling because of his symptoms, I am most certainly not suggesting physically getting away, rather, I’m talking about mentally. MS is a disease that can consume your thoughts if you let it. So, I find it extremely important to be able to step away from this mindset. It’s important to get away from this disease.

MS is ever in our thoughts

No one wants to think about their illness all the time, it just happens. When a disease can have the impact the MS can, it’s hard not to think about it a lot. The heavy and draining fatigue that stops us in our tracks and can impact every part of our day. The sometimes constant uncomfortableness because of tremors or spasms. The burning nerve pain that makes many of us want to leave our bodies. And of course, any discussion on thinking about the disease simply must mention the constant concern of what our future may hold because of it. There are many reasons that make it hard to not think about our illness and the body it’s left us with. While some people have occasional issues, there are many that have every bit of their existence hampered by this disease.

It’s important to “get away”

A good mindset is important for everyone, even more so if you live with an incurable disease. I’m not trotting out the cliched “be more positive” bit, enough people do that already. However, the more we are forced to think about our disease, the more stress that creates. As I’ve written before, stress and MS are a very bad combination. With stress being a common trigger for those with MS, we can end up worsening our symptoms by fixating on our illness too much. Talk about a recipe for disaster, thinking about our illness too much stresses us out, making our symptoms worse, so we then think about it even more and repeat the process! Yeah, living with this disease isn’t easy!

Getting away

So what do we do? A number of folks out there don’t have this issue, maybe their disease hasn’t progressed as much as others, or maybe they have found some other ways to keep their mind on an even keel. There are also many people, like me, who are disabled and spend a ton of time alone and at home. I’ll tell you, it can be hard not to think about anything and everything related to your illness when you are in that situation. Not only because of the constant issues, but because I am home and alone because of the disease. It’s only natural for our minds to gravitate to that topic.

Finding something to occupy our minds

If you don’t find something to occupy your mind, then that thought process will eat you up. I wrote a while back that it’s important to find a passion in something. Finding something enjoyable to occupy your mind with is essential to living with a chronic illness. Whether it be collecting toys like me, following a new sport, reading, volunteering, or any other kind of hobby, it’s important to give yourself something else to think about. It’s crucial to let your mind “get away” from your illness.

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

Devin

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Comments

  • poppydarling
    6 days ago

    Truer words were never spoken! You always hit the nail on the head, but especially with this one 🙂 MS can consume us because it’s all consuming to struggle with such a complex disease. No amount of happy thoughts will break you free but a hobby that puts you in the flow definitely helps (I do paper crafts and donate cards to others). Thanks for another great column… I wish you well!

  • michael honeycutt
    6 days ago

    Oh I hear you Devin! I spend huge amounts of time alone except for 2 dogs. I go insane trying to stay occupied. Can’t drive. High crime neighborhood. Very rural. Only friends and wife all work. Life online is not much life at all but beats the heck out of the alternative. I have been a lifelong devout nerd and have a thirst for learning. I taught myself Raised Bed Gardening, Food Canning and Preservation, Mushroom Cultivation from the spore through an edible Gourmet Mushroom (Lions Mane is delicious and supposed to be good for the brain) ….
    The list goes on. I used to be a pretty good artist and sculptor. MS has wrecked my ability to do metal sculpture and blacksmithing because of heat sensitivity. I can’t paint or draw for squat because I shake. BUT— I CAN still make small, uncomplicated metal sculptures and simple jewelry with a very small torch. I CAN (and AM) learn more about paper mache sculpting techniques for making gifts. I have a history of multi media art that can be applied to smaller, more manageable projects. I spend entirely too much time on YouTube learning about ANYTHING that I ever wondered about. I’m getting mean at games of trivia. I get thoroughly overwhelmed in groups and avoid crowds like the plague but it’s very isolating, so I occasionally just jump into the deep end and go get all social for a public restaurant meal with a group. I can’t keep up with 10 people talking all at once but it’s good to be around folks occasionally, even though it’s exhausting. Stay strong brother! Just getting through the day is an example to the rest of us and you write about it well. We’re all in this boat together!

  • poppydarling
    6 days ago

    Michael, thank you for sharing these thoughts… I’m also an insatiable online learner and have taught myself many things including mixed-media art journaling which I can still do even when I shake or when I’m numb — I’ve learned to appreciate squiggly lines:-) I now plan less complicated projects and feel happy with those. I’ve eliminated perfectionism and expectations and the nice surprise is I can still be happy. Glad that you’ve found a new creative sweet spot too!

  • Annabelette
    1 week ago

    Indeed! My body is constantly rebelling, but I don’t have to be captive to it. It’s so wonderful and so necessary to escape, if only in my mind. Thanks for the reminder.

  • Janus Galante moderator
    2 weeks ago

    Devin I’m sure you’ll get tons of replies to this great article but one that you wrote about awhile back comes to mind, “When Olivia Benson isn’t On.”
    I remember replying, that to me, watching movies that I love is something akin to an audio-visual version of comfort food. It still is! Movies that I’m very familiar with and nearly know by heart, (or t.v. programs) are extremely soothing, calming and definitely helps me get away. I don’t know why exactly, but it works for me!

  • Devin Garlit moderator author
    1 week ago

    Thank you Janus, when I wrote that one, I expected some strange looks, but it really resonated with a bunch of people!

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