Tips on How to De-fang the Monster MS

Multiple sclerosis has hounded me for years. It’s like the annoying little brother that tagged along with you as a kid, wanting to play and screwing up your plans to hang with your friends. You try to lose the little bugger by suddenly sprinting ahead to discourage him, but he keeps apace with you and you realize it’s hopeless. Now you are a grown-up and would really appreciate some alone time. But the little sod knows all your secret hiding places. He never grew up, is as obnoxious as ever, and will shadow you to the end of your days. I’m telling you, it’s enough to make me mental.

Protecting myself from the 8-year-old psychopath that is MS

This might sound weird, but lately I think of MS as a child whose brain hasn’t fully developed a moral conscience or empathy. The kind of kid that tortures kittens and tries to strangle her one-year-old brother in his car seat just for the thrill.1 How would I deal with an eight-year-old budding psychopath? I can’t make her normal or keep her completely at bay. But I can protect myself by manipulating and distracting her for a while. Here’s how.

Role-playing

Kids love to use their imagination, and one popular method is to play pretend. What about this: You’re having a crappy, spasmy, fatigue-y day and MS will not leave you alone. “Let’s play a game,” you tell your MS, “where we pretend to be a thing. I’ll go first.”  You sprawl in your recliner, arms and legs limp, head lolling to one side. “I’m pretending to be unconscious.” You stay that way for the rest of the afternoon.

Hide-and-seek

Hide-and-seek is similar to role-playing. “Okay MS, close your eyes and count to 10,000 and I’ll go hide. Ready?” You could get up to two hours of uninterrupted snooze time. It’s a good game but it only works once.

Now for some serious ideas

Okay, that concludes the jokey part. Now I’ll get serious. I’ve been searching for some thoughtful ways to address the helplessness that so many people with MS describe here in our online community. Personally I get stuck in frustration and negativity when I have no more ideas for what to do. So here are some ideas that might spark a change of mood.

Changing our thoughts changes our behavior

In Amy Morin’s book 13 Things Mentally Strong People Don’t Do, the author describes mental strength as regulating our emotions, managing our thoughts, and behaving in a positive manner despite our circumstances.2 It is not the same as “thinking positive,” a popular meme that can be just as detrimental as always thinking negative since both are ignoring reality. You’ve probably heard of Cognitive Behavior Therapy, which is pretty much how one achieves mental strength. If we change our thoughts, our feelings will change, and so will our behaviors.

Things mentally strong people don't do

With that in mind, here are the 13 things mentally strong people don’t do 3:

  1. Wallow in self-pity.
  2. Dwell on things they can’t change.
  3. Give away their power.
  4. Shy away from change.
  5. Give up after one failure.
  6. Dwell on the past.
  7. Try to please everyone.
  8. Fear taking calculated risks.
  9. Make the same mistakes over and over.
  10. Resent other people’s success.
  11. Feel the world owes them.
  12. Fear alone time.
  13. Expect immediate results.

Evaluating if MS has truly ruined my life

So back to the “change our thoughts” part of the system. It simply means evaluating the facts of a situation. For example, if my dominant thought is that MS has completely ruined my life, it only follows that sadness and anger will dominate my emotions. It takes work, but it starts with evaluating whether it’s true that MS has completely ruined my life. What's really true is that it's changed my life, but also that I am far from being irredeemable. While I acknowledge the daily challenges of MS are daunting, I have developed tools to stay afloat until I can be upbeat once again.

Humor and sharing your story

One tool is humor. I would add “Lose one’s sense of humor” to Morin’s list of things mentally strong people don’t do. Another is telling your MS story. I like to use both and often do. Characterizing MS as a child psychopath is my dark humor at work. It’s not for everybody, but it comes naturally to me. I think of my life as a really long play with lots of characters, and some of them aren’t people or pets. I cast multiple sclerosis as the boogeyman, the monster, but I take a few teeth out of it by calling it a kid psychopath. It makes me smile, and as long as a thought can do that, I’m going to be okay.

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