{"id":526,"date":"2025-09-25T15:54:12","date_gmt":"2025-09-25T15:54:12","guid":{"rendered":"https:\/\/wickedsister.evit.com.au\/index.php\/2025\/09\/25\/im-still-standing-but-barely\/"},"modified":"2025-09-25T15:54:12","modified_gmt":"2025-09-25T15:54:12","slug":"im-still-standing-but-barely","status":"publish","type":"post","link":"https:\/\/wickedsister.evit.com.au\/index.php\/2025\/09\/25\/im-still-standing-but-barely\/","title":{"rendered":"I\u2019m Still Standing, but Barely"},"content":{"rendered":"

By multipe sclerosis <\/strong>and DWTS<\/strong><\/p>\n

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This is how my confused, layered, weird, MS<\/strong> brain works.<\/p>\n

\u201cI wonder what I\u2019ll 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<\/strong> but glad the other judges are still there. Remember when Bruno Tonioli<\/strong> was in that video for Elton\u2019s John\u2019s<\/strong> \u2018I\u2019m Still Standing\u2019 in the 80\u2019s? He was funny. Too bad I can\u2019t relate to the song. I may still be standing, but barely. Speaking of songs, what about Nancy Sinatra\u2019s<\/strong> \u2018These Boots are Made for Walking?\u2019 That\u2019s a fun song to dance to. But for me, the title should be \u2018These Boots Might be Made for Walking but Standing Not So Much.\u201d<\/p>\n

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For context, Dancing with the Stars is the only reality show I watch. I used to like Deadliest Catch, <\/strong>but it started to get repetitive- look for crab, no crab, lots of crab, grouchy captains, inept greenhorns, maybe a storm, Mike Rowe\u2019s<\/strong> cool voice, etc.<\/p>\n

I also watched Sister Wives for a while because, like, wow, really?<\/p>\n

Anyway, for ACTUAL context away from my brain ramblings, here\u2019s another frustration about MS<\/strong> and invisible symptoms- I can walk much, much better than I stand, especially if I have something fun or delicious to walk to.<\/p>\n

(Overindulgence on sweets guilt is greatly minimized if I must walk far to get them.)<\/p>\n

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Walking somewhere fun? No problem.<\/p>\n

Feel like trekking downtown for a mocha latte? I\u2019m in!<\/p>\n

But wait in a long line to see a cool sight? I\u2019ll skip.<\/p>\n

I don\u2019t 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.<\/p>\n

(Not that they have ever been on fire thankfully, but that\u2019s what I imagine legs on fire may feel like. A throbbing intensity that makes me want to cry on the spot.)<\/p>\n

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Is this MS<\/strong> normal?<\/p>\n

Is there such a thing as MS<\/strong> normal?<\/p>\n

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.<\/p>\n

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.<\/p>\n

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.<\/p>\n

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Eventually one of the salespeople came over to help her and I let them, feeling judged because I look normal but lazy.<\/p>\n

\u201cLook at that daughter not helping her mom shop? What\u2019s wrong with her? Guess I\u2019ll have to stand here while the mom looks around.\u201d<\/p>\n

She wasn\u2019t busy and it is an expensive store, so I didn\u2019t feel too bad, but still. If the salesperson said something to me, I could explain why I wasn\u2019t helping but she wouldn\u2019t because that would be rude. Sometimes I want rudeness just so I can defend myself.<\/p>\n

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.<\/p>\n

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\u2019t know but that is not always the case.<\/p>\n

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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\u2019m all good.<\/p>\n

Then I bumped into a friend I hadn\u2019t seen in years. I wanted to catch up and I think she wanted to catch up as well. But I just couldn\u2019t. How could I?<\/p>\n

\u201cIt\u2019s 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.\u201d<\/p>\n

That would be my being rude. Especially since she was on crutches!<\/p>\n

(Don\u2019t 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.)<\/p>\n

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

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I think I handled that situation well as I have had some practice negotiating circumstances like that before, but it is still another MS <\/strong>juggling act.<\/p>\n

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.<\/p>\n

(That\u2019 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\u2019 riding on a donkey.)<\/p>\n

And I had to pee.<\/p>\n

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\u2019m 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.<\/p>\n

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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\u2019s an MS\u2019er<\/strong> to do when I bump into neighbors who want to stop and chat? There\u2019s that rudeness thing again.<\/p>\n

I have explained my predicament to some, but I can\u2019t expect them to remember, especially if we are starting a good conversation.<\/p>\n

I know there are rollators you can rest on, but I don\u2019t need a rollator in general. And since walking is good for me, I don\u2019t want to be encumbered with having to push something I don\u2019t need unless I don\u2019t want to appear standoffish.<\/p>\n

It\u2019s true, this is a small problem in life when compared to other problems. Even compared to the problem that is MS<\/strong> itself or how people with MS <\/strong>are perceived by judgmental others when they look fine.<\/p>\n

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.<\/p>\n

And maybe get a song or two stuck in your head in the process.<\/p>\n

These boots are made for walking indeed\u2026<\/p>\n

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Source: yvonnedesousa.com<\/a><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

By multipe sclerosis and DWTS This is how my confused, layered, weird, MS brain works. \u201cI wonder what I\u2019ll 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…<\/p>\n","protected":false},"author":0,"featured_media":527,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[11,15,9,8,13,14,12,10],"class_list":["post-526","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-multiple-sclerosis-research","tag-brain-repair","tag-marburg-type-ms","tag-ms","tag-multiple-sclerosis","tag-myelin","tag-neuroregeneration","tag-oligodendrocyte","tag-remyelination"],"_links":{"self":[{"href":"https:\/\/wickedsister.evit.com.au\/index.php\/wp-json\/wp\/v2\/posts\/526","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wickedsister.evit.com.au\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wickedsister.evit.com.au\/index.php\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/wickedsister.evit.com.au\/index.php\/wp-json\/wp\/v2\/comments?post=526"}],"version-history":[{"count":0,"href":"https:\/\/wickedsister.evit.com.au\/index.php\/wp-json\/wp\/v2\/posts\/526\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/wickedsister.evit.com.au\/index.php\/wp-json\/wp\/v2\/media\/527"}],"wp:attachment":[{"href":"https:\/\/wickedsister.evit.com.au\/index.php\/wp-json\/wp\/v2\/media?parent=526"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wickedsister.evit.com.au\/index.php\/wp-json\/wp\/v2\/categories?post=526"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wickedsister.evit.com.au\/index.php\/wp-json\/wp\/v2\/tags?post=526"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}