Unexpected Priveledged Problems When You have disabilities, Wear AFO’S /Leg Braces & Have A Neuromuscular Disease Like Charcot Marie Tooth or MS.
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Disclaimer:

All problems are relative to the person, situation, demographic, & resources . The following “problems” are those faced by me, an admittedly privileged suburban woman with invisible (not obvious) physical challenges due to an inherited neuromuscular disorder called Charcot Marie Tooth (CMT).

The hashtag #firstworldproblems refers to those everyday, non life-threatening, and sometimes superficial  ”problems” many of us encounter as middle & upper class suburbanites.  Despite our various chronic conditions & physical challenges, most of us are fortunate enough to have our basic needs met, like food to eat & a roof over our heads. The absence of food & shelter = BIG PROBLEMS. 

With that said, it totally sucks that my top 8 #firstworldproblems have to involve disability. Why can’t I just have ”normal” first world problems?, like for example, learning that Starbucks has discontinued my favorite latte, or that I can’t  use my SkyMiles to book a vacation during winter break? Wait, I have those problems, too…Ugh!

 1. It’s Hard To Stand Still While Being Spray-Tanned Naked

Getting a spray tan when you have a neuromuscular disorder and wear afos Desc - Photo showing woman getting spray tan as it relates to having an invisible disability and bad balance due to CMT

You wanna know what’s worse than standing buck naked in front of a total stranger while she closely examines and airbrushes every inch of your body

Standing unsteadily buck naked in front of a total stranger while she closely examines & airbrushes every inch of your body. 

Even though it’s hard and I don’t enjoy identifying myself as disabled, I needed to have a conversation about my invisible disabilities with the spray tan place beforehand. You can read more on having these type of conversations, in my post, A Recipe For Asking For Help.

First, there’s the problem of taking off your clothing & shoes. When I began going to Sol Potion Spray Tanning Studio, they didn’t have chairs in their tiny changing rooms adjacent to the spray rooms. Once I explained my ”problem” to the owner/sprayer, she immediately took a chair from the lobby & brought it into the room.

I use a wall to hold on to when asked to bend over (sorry for the visual) and because I already told the technician that my balance sucks, she moves extra quick. Although the entire process is uncomfortable, it’s well worth it in the end. I mean, If I’m gonna make the effort to take off my leg braces and stumble around a pool in a bathing suit, I might as well attempt to camouflage my thigh dimples and look bronzed & healthy doing so, right?

 2. I Won’t Win The ”Neatest Chip Pile” Award At The Blackjack Table

Casino games are hard to play when you have a neuromuscular disorder and disabilities like charcot marie tooth disorder

Due to progressive hand neuropathy, there are a lot of things I struggle with that once came easily…Like, writing with a pen, buttoning clothing, using a zipper, twisting off toothpaste caps, etc. On a recent trip to Las Vegas, I discovered yet another task that requires a steady hand and use of a pincher grip, playing blackjack.

When you lack fine motor dexterity, black jack chips are not easy to grip & hold on to. I quickly learned that the unspoken, ”stack your chips into neat piles” rule was a futile effort. Each time my fingers touched a chip, it felt like I was playing the nightmare game of Jenga, where you’re supposed to place pieces on top of an unsteady tower without knocking it down. Impossible.

Also, there’s a whole lot of hand coordination and math involved both not my strong suits.  But, once the dealer got the hang of my ambiguous ”hits” and ”stays” and started to compute the math for me to speed things up, we eventually got on a roll; I was up $300 for about 30 minutes that day… until I wasn’t.

 3. When Traveling, There’s A 50/50 Chance Of Setting Off Metal Detectors & Not Having Time For A Sit-Down Airport Breakfast

TSA Precheck helps if you wear afos/ leg braces and have disabilities, but not always

Airport Security Is a pain in the as$ for everyone, but especially for those of us with not obvious disabilities. I’m not gonna go on & on about the challenge of having to take off your shoes or explain why you can’t take them off & need to be patted down instead. Many of you have been there, done that. 

But, here’s the really annoying part. In order to avoid the whole taking off my shoes or having to ”explain” that I wear leg braces and can’t remove them etc ordeal, I decided to make an appointment at the TSA office and pay for pre-screening. This, I was told, would allow me to go through the faster TSA pre-screened line where you didn’t have to take your shoes off or go through those scary (and hard to balance in holding your hands over your head) enclosed machines.  Wrong!

There’s a ”randomly selected” clause in the TSA pre-screen agreement, which of course I didn’t learn about until I was randomly selected on the very first trip I took as a new TSA pre-checker.  Those extra 30 minutes reserved for a healthy pre-flight/vacation egg white omelet, turned into a stress-filled wait for a Starbucks latte & a 3000 calorie chocolate chip muffin I stuffed in my mouth before boarding.

 4. My Nail Technician Complains About Me In Vietnamese

Women getting a manicure illustrating how its difficult to do so when you have a disability & hand neuropathy

I have switched nail places & technicians countless times. Unlike some of my ”able” friends who enjoy getting manis & pedis, I rank going to a nail salon, just slightly above getting my teeth cleaned at the dentist. Basically, I go because I have to. My fingers suck (hand neuropathy) & it’s difficult to grip & open things, so having decent nails sometimes helps. My feet, well….At home, I use an electronic file on a regular basis to prevent callouses, but my toenails need more TLC than I’m capable of providing.

The manicure problem is mostly during the polishing part. It’s like my hands have ADHD and literally cannot stay still while the technician applies polish and especially while waiting for them to dry. Pedicures are more involved because my feet are fused (they have metal plates inside to prevent movement/injury) and won’t ”turn” on command. 

First, there’s the fact that I have to remove my leg braces sitting in a narrow space while curious onlookers take notice. Second, after the technician sees the leg braces, she inevitably begins to say random things about me in her native language to nearby co-workers. Then, I have to somehow communicate that I have a ”problem” with my feet, but there’s nothing she needs to do differently. eg. Please don’t skimp on the calve massage part.

I always leave knowing exactly what the technician is thinking when I leave: ”She’s a pain in the ass, but at least I got a good tip.”

5. I Can’t Hear All The Good Mom Drama From The Bottom Bleachers.

If you dont have good balance due to a neuromuscular disorder like CMT or MS, you have to sit on the bottom, bleacher and often miss out.

Can you believe they still make aluminum bleachers without handrails?  When I was a school aged kid, the thought of tripping and falling down them was just as frightening as having to run relays in gym class.  Despite those fears, my balance must not have been so bad back then, as I have a few memories of sitting with my friends at the very top.

I had a flashback about this last year when my son Blake was playing basketball for his high school freshmen team. When I arrived at the first home game of the season, a few dads I knew were already there and sitting on the very top level of bleachers. I waved and took a seat near the bottom. Actually, I sat on the very bottom and then scooted my ass up another row so I could at least see the game.

When my mom friends arrived, they stopped by my unofficial ”handicap” and grandparent area to say hi and chat for a minute, before making their way up to join their spouses at the top. I experienced what teenagers call FOMO (fear of missing out) that day. I wanted so badly to have the balance to get up & down from the top without assistance, but I knew the risk wasn’t worth it. So, I sucked it up as those of us with physical challenges learn to do.

Don’t even get me started on stadium seating at concerts. At least there, I blend in well with the unsteady drunks.

6. I Can’t Slide A Hotel Key Card & Hold Coffee At The Same Time

It’s hard to hold a hotel key card when you have a neuromuscular disorder and disability

I haven’t done a study, but, I’m thinking that those hotel ”security” elevators that won’t budge without using a key card, rarely if ever, hinder actual crime. I mean if you’re a  ”bad guy”, wouldn’t you just take the stairs anyhow? Unless you’re a bad guy with physical challenges, the stairs are a lot faster, right?

Those ”security” hotel elevators are pointless and just an added stressor for those of us with weak hand grips & other disabilities. It’s hard enough to hold the flimsy key card still in order to open the room door.  How do they expect people to bring hot coffee back to the room and fidget with a card one handed?  Perhaps, key card elevators were never intended to provide added security, but instead, were a genius hotel marketing ploy to increase the number of guests ordering overpriced room service?

No way I’m falling for it – Next hotel stay, I’ll just use the deadlock on the door to prop it open while I go & get coffee and wait until someone else goes into the elevator with their key card. Hopefully, said bad guy isn’t reading this.

7. I Take The ”Fine” Out Of Fine Dining.

I get stains and make a mess eating due to having disabilities and a neuromuscular disorder CMT

I’m a hot mess most of the time, but especially when eating.

People are always picking food out of my hair or alerting me to imminent food stains & potential disasters. ”Be careful….there’s ketchup on your elbow” or, ”I’ll get some club soda ….it’s hard to get zip sauce out unless you treat it right away.”

There are always crumbs on my lap when I stand up to go the bathroom, and busboys tend to give me confused looks in between courses, when they have to clean up more than just the salad plate.

I am also a bit high maintenance when ordering  (my family if reading this, is definitely shaking their heads in agreement). ”Please, may I have a tall glass with ice and a straw, NOT a stem glass.”, ”Can you please chop the salad… I have trouble with my hands?”

When I was a little girl, my mom enrolled me in a manners class called, White Gloves and Party Manners. They taught us table etiquette like, how to set the table, which fork to use with what course, and how to eat ”like a lady”. I’m thinking of creating a table manners workshop for people with invisible disabilities. I’ll share all of my best ”eat like a Lainie” secrets and giveaway Tide To Go Wipes and designer inspired adult bibs.

8. My Halloween Costume Choices Are Limited

Finding halloween costumes that work with afos/ leg braces is not easy.

I didn’t really love playing dress-up or even trick or treating as a kid. It was ok when I was a young girl and just went to a couple of houses with my dad and sister in toe. But, I hated it as a pre-teen. This was before I had to have surgery on both ankles to prevent them from turning/breaking and well before I began wearing leg braces as adult.

I’m sure I would have liked trick or treating had it been with just 1 or 2 friends, but we went with large groups of girls, and it was always a struggle to keep up & not trip over whatever last minute princess gown I found at Kmart.

But, the last 10 or so years, I’ve been invited to an annual adult only Halloween party given by a fun couple in my neighborhood. The year before their first party,  my whole world changed when I found a pair of knee high flat leather boots that I could walk in & that fit comfortably over my leg braces. They were a total game changer as I was no longer destined to a life of frumpy dresses and I found I could look stylish pairing short dresses with tights and tall leather boots over my leg braces. You can read more on finding boots for afos/leg braces in my Boots are A $#&# blog .

But, there are only so many age-appropriate and somewhat sexy Halloween costumes that work with tall flat boots. Believe me, I’ve spent endless hours searching on Pinterest. I figure Batgirl has another 2-3 years max before she’s forced into retirement.

The End

 

What do you think? Can you relate to any of my #firstworldproblems? Please share your thoughts in the comments section below. I love hearing from my Imperfectly Perfect friends.

 

💜

Lainie


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42 Comments

  1. This made me laugh out loud. I could relate to all of these as my hands have gotten so baf that I can’t even zip my pants by myself anymore. Thanks for your words and helping me feel less alone.

  2. Love your perspective on these relatable problems we roll with every day. Thanks for adding laughs to our adventure… Much needed most days.

  3. Great way to start my day 👍🏻 I love the designer bib idea!! I can never get thru a meal without dropping something on me LOL I would also want to encourage people to find a place with a warm pool workout program , I started with aquactic arthritis classes (took me several times to actually go to class) , then I discovered AiChi ( think yoga in the water ) it is SO great! I began after both my ankles were fused 10 years ago, now I am a perfectly imperfect Certified instructor!! Feeling graceful and balanced can happen in the water!

  4. 100% relatable! I don’t even brave a spray tan or mani pedis anymorre. And yes, the dining issues. I now hold hamburgers weird and order things that are easier to hold/eat/cut etc.
    ATM cards, hotel key cards, a pox om those.
    And it’s so good to know that stadium tthseats bothered others too. In high school I’d think, “Am I just not trying hard enough? Everyone else can do this.” A a

    • Julie,
      Thanks for relating…omg the sandwich thing is so true. My mom & I used to fight when she was alive about this. Her hands were much worse than mine and she ordered salads all the time. It killed me. 😂 You are not alone…I overthink everything.

  5. LOL, Lainie! What about the looks you get when you drop a quarter on the floor and don’t even bother to attempt to pick it up?! #balanceANDhandissues

    • 😂😂😂😂 Yes, I wrote about that in one of my first posts called ”How to get a grip when you can’t”. I want to invent a portable magnet thing …remind me to tell you about it. 💕

  6. My personal love/hate is me and my scooter and elevators! I cannot remember how many hours I’ve lost in my life waiting for a damn elevator for enough space in it for me and my scooter. Nearly missed a damn plane in Paris earlier this year, because, 10 miles away, my husband and I waited pretty much an hour to go one floor in a daily station! For gods sake, people, if you’ve got legs that work, use the stairs! The giant suitcase you have with you does not impress me!!

    • 😂😂 I know I replied to you via Facebook. Thanks for sharing about the elevators. I would be a bit#% on wheels for sure if I had to wait longer for elevators. Thanks for reading!

  7. Bravo! I see myself in so many of these! I’m single, and just saw Hamilton a few weeks ago. Thank GOD I was only in the 3rd row of the Mezzanine, as I had to grab onto the end seat in each row to get up the steps. And most of you can probably also related to what I call my “bladder management” scheme of not drinking too much so I don’t have to leave my seat during the concert, show, or game!! Ah the CMT life!

    • 😂😂😂😂 ”bladder management” scheme is hilarious & true. When my mom was alive, she was very conscious of this. I feel. I can picture the Hamilton theater…How strong & brave you must be….💪💪 . Thanks for reading & sharing Robin.

  8. all of this is so true/its just a mirror image of me.not the spray tan ,i can’t stand still with out holding on to some one or some thing.i can’t cut food up on my plate it very often fly s off my plate ,food all over the floor and down my front.thanks for letting me know I’m not alone.wishing you all the best.x

  9. This was a fantastic read. I could relate to almost everything — i’m not nearly as brave as you, so no spray-tans, manicures or pedicures here! The bleachers thing especially hit home — casually scooting up a few levels on your bum!!! I remember doing that. you’re such a great writer – your sense of humor really comes through and boy does that improve my day 🙂

  10. I gave up on all things that fasten, no zippers, no buttons, no snaps etc. I wear all pull on leggings and pull over tops! I just found your site and love it! Thanks for being so open and honest (& funny) about having a disability and all that goes along with it. When I first got dx’d (EDS) I started using make up for the first time. I figured that even if I felt crappy I did not have to look crappy. I stopped, but may start again…so thank you for the encouragement!

    • Dawn,

      This comment is awesome & really made my day. I love that you ”started using makeup” after being diagnosed with EDS. I would love to quote you on an Instagram/Facebook post if interested and ok with it? Please let me know on messenger or by email info@trend-able.com. Thanks

  11. Love the sense of humour, and also was interesting to see the cultural differences. Half of those things on the list I had no idea existed haha! Now you’ve inspired me to create my own list ha 😉

  12. Lainie, your talent is making me both laugh and want to cry! I also think you put yourself out there more than the average girl with invisible disabilities, in an amazing way, living life to the fullest. Thank goodness you then write about it! Thank you as always. I love reading your posts!

  13. I love everything about this but I really enjoy your writing style! I feel l8ke I could just sit down and read your blog all day!

  14. Drinking beer/wine with a straw always raises eyebrows. Going commando under my maxi dress at the waxing salon is uncomfortable (I can’t dress/undress myself). Needing to grab something for support if someone makes me laugh while walking always draws stares (Is she drunk?). Don’t forget the tempermental chefs who refuse to allow your steak to be cut before it is served to you. And public restrooms are an equal opportunity pain in the a$$ for my husband and I — he gets dirty looks for hanging out near the door waiting to assist me and I get shocked stares as I walk in/out of the restroom with my pants open. Ahhh, the joys we share!

    • You made me laugh! Although I am sorry you relate and have those issues. It sounds like you make the best of things and do not let the stares or weird situations stop you from living!

  15. Love this. I am a lucky CMT sufferer as my hands a barely affected yet, but my feet, ugh. The days a spending hours buying dressy, but flat shoes that would fit my orthotics is a fond memory. The ladies day that I only got to after spending 5 minutes in my new dressy shoes before stacking it in front of hundreds of people and my best girlfriends, in a dress, managing to badly injur both ankles ( again) means now I wear ankle braces permanently. But I just managed to again fall, this time in front of my boss and entire department, while on a department retreat while wearing the braces and my trusty Converse and again sprain both ankles at the same time. Fun. Living in Central QLD in Australia 38 degrees (C) is not uncommon so I dream of days of wearing a simple sun dress and cute sandals, but most days it is tunic, leggings (to cover the braces) & my Converse. Anyway. Thanks for a fun resd.

    • Hi Kristy,

      Thanks for taking the time to read & comment. Ugh that sucks about the falls and especially the recent one in front of co-workers. Totally annoying and embarrassing I’m sure… but as they say, “what doesn’t kill as makes us stronger”… Have you considered a triple arthrodisis to prevent the ankle turning? anyhow, please stay in touch & let me know how you’re doing.

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