I’m Still Standing, but Barely

By multipe sclerosis and DWTS

This is how my confused, layered, weird, MS brain works.

“I wonder what I’ll do tonight. Is there a good true crime documentary to watch? Oh wait, Dancing with the Stars new season starts at 8PM- yay! I miss head judge Len Goodman but glad the other judges are still there. Remember when Bruno Tonioli was in that video for Elton’s John’s ‘I’m Still Standing’ in the 80’s? He was funny. Too bad I can’t relate to the song. I may still be standing, but barely. Speaking of songs, what about Nancy Sinatra’s ‘These Boots are Made for Walking?’ That’s a fun song to dance to. But for me, the title should be ‘These Boots Might be Made for Walking but Standing Not So Much.”

For context, Dancing with the Stars is the only reality show I watch. I used to like Deadliest Catch, but it started to get repetitive- look for crab, no crab, lots of crab, grouchy captains, inept greenhorns, maybe a storm, Mike Rowe’s cool voice, etc.

I also watched Sister Wives for a while because, like, wow, really?

Anyway, for ACTUAL context away from my brain ramblings, here’s another frustration about MS and invisible symptoms- I can walk much, much better than I stand, especially if I have something fun or delicious to walk to.

(Overindulgence on sweets guilt is greatly minimized if I must walk far to get them.)

Walking somewhere fun? No problem.

Feel like trekking downtown for a mocha latte? I’m in!

But wait in a long line to see a cool sight? I’ll skip.

I don’t know what it is but standing for over ten minutes hurts. And it wipes me out faster than a one-mile jaunt. My legs begin to burn and start to feel like they are on fire.

(Not that they have ever been on fire thankfully, but that’s what I imagine legs on fire may feel like. A throbbing intensity that makes me want to cry on the spot.)

Is this MS normal?

Is there such a thing as MS normal?

Yesterday I took my mom to a local shoe store because she wanted to look for, well, shoes. I got confused by what type she needed. Fall shoes? Sandals? Slippers? Something like that.

My mom uses a walker and moves a bit slower than she used to. The store is big with long aisles, and my mom had to peruse.

I found a seat customers use to sit when they try on shoes and just sat. For a while. It was just too much to stand while Mom shopped.

Eventually one of the salespeople came over to help her and I let them, feeling judged because I look normal but lazy.

“Look at that daughter not helping her mom shop? What’s wrong with her? Guess I’ll have to stand here while the mom looks around.”

She wasn’t busy and it is an expensive store, so I didn’t feel too bad, but still. If the salesperson said something to me, I could explain why I wasn’t helping but she wouldn’t because that would be rude. Sometimes I want rudeness just so I can defend myself.

I did offer to help by holding the box of shoes my mom was thinking about, giving the clerk a free hand to suggest others. I walked to her, took the box and then sat my aching legs back down.

My mom bought a pair, so who cares what the clerk thinks. This would not be an issue if it only pertained to people I don’t know but that is not always the case.

Later, my mom needed things at the grocery store, and I was only too happy to go in for her. Quick steps, small line self-check-out and I’m all good.

Then I bumped into a friend I hadn’t seen in years. I wanted to catch up and I think she wanted to catch up as well. But I just couldn’t. How could I?

“It’s great to see you- how have you been? I would love to know but can only spare three minutes after my long day or I might collapse.”

That would be my being rude. Especially since she was on crutches!

(Don’t ask me why- I was afraid to ask in the event it was a long story. Just like I was afraid to ask after her kids, her job, and her in general.)

I gave her a quick hug and mentioned looking her up on Facebook and then rushed off. And I will look her up on FB. I would really love to catch up. Just somewhere I can sit down while we are doing it.

I think I handled that situation well as I have had some practice negotiating circumstances like that before, but it is still another MS juggling act.

The day before I joined some friends at a church I used to be a regular member of. I saw people I really wanted to catch up with but knew it would take a while. Plus, I had been standing during Mass.

(That’ s ok because those are usually quick stands, except for Palm Sunday Mass. That one has me praying for a donkey I can respectfully sit on while we remember Jesus’ riding on a donkey.)

And I had to pee.

When the last hymn started and my friends had to sneak out for work, I followed them. I took my time using the bathroom while the more respectful parishioners waited for the cantor to finish. This allowed me to do my business, rest a bit since I’m not a guy (get it) and then walk out and visit with the two people who were still around. Sure, I missed visiting with some others but my weary, achy, legs of fire thanked me.

I am blessed with wonderful neighbors, and I love to catch up with them. I also know walking is good for me and I enjoy it. So what’s an MS’er to do when I bump into neighbors who want to stop and chat? There’s that rudeness thing again.

I have explained my predicament to some, but I can’t expect them to remember, especially if we are starting a good conversation.

I know there are rollators you can rest on, but I don’t need a rollator in general. And since walking is good for me, I don’t want to be encumbered with having to push something I don’t need unless I don’t want to appear standoffish.

It’s true, this is a small problem in life when compared to other problems. Even compared to the problem that is MS itself or how people with MS are perceived by judgmental others when they look fine.

But it is a weird one that comes up often in my life so I thought I would share to see if you could relate.

And maybe get a song or two stuck in your head in the process.

These boots are made for walking indeed…