Coping with CMT Charcot Marie Tooth & MS, & AFO’s in warm weather

 DISCLAIMER:

A completely made-up mood type disorder effecting physically challenged, orthosis wearing individuals at the onset of Spring and Summer.

 SYMPTOMS:

  • Sudden bursts of sadness viewing summer clothing catalogs
  • An increase in “I can’t” at the beginning of sentences
  • Feelings of annoyance and anger at Starbucks baristas and other overly cheerful people
  • A noticeable increase in Netflix binge couch days.
  • Usually self-diagnosable
  • Extremely contagious
  • Treatable

THE FACTS:

For those people without physical disabilities, spring symbolizes a renewal of energy and light.

At the first sign of warm weather, people “spring clean” their closets and can’t wait to pull out the cute sundresses and sandals they stored away all winter. The neighborhood runners begin their early AM marathon training, and groups of speed walking moms start their daily calorie burning routines.

While people with physical challenges may be happy to see flowers blooming and to no longer have to worry about slipping on ice, the change in season can also serve as an “in your face” reminder of your losses and physical limitations.

Maybe you were once able to speed walk with the other moms and now struggle to walk the length of a mall. Or, your balance has worsened and last year’s family bike rides now seem just as terrifying to you as the thought of walking a tightrope.

For leg brace and wearers of other types of orthotics, the change in temperature also brings with it the problem of what to put on your body that doesn’t make you feel frumpy and over-heat you. Spring means that summer is coming, and for you, throwing on shorts & flip-flops for a day at the beach is not an option.

Even if you have lived with a disability your entire life, a new season can trigger feelings of self-pity and sadness over the “what if’s” in your life.

If you think you may have the made-up, totally not real diagnosis, “Seasonal Self-Pity Syndrome”, what follows are some suggested self-help treatment options. (These suggestions are aimed at people who are in a rut and off their usual game. If your symptoms”are on-going and you’re feeling depressed and/or suicidal, please go see a mental health professional immediately. )

HAVE A PITY PARTY

Your feelings are normal and valid and it’s important to acknowledge them. When we blow them off or try to block them, those same feelings tend to linger on and intensify. I give myself a 6-8 hour pity party each spring to feel the feelings that bring me down.

There are no balloons or cake at my annual pity party. I just sit with the sadness and notice how my body feels when I think about all of the things I used to be able to do and wear. Like the fact that it annoys and angers me that my feet swell and look even fatter when its hot out, and that I feel angry that I can’t wear high heels and pretty summer dresses like other women do. Ok, blah blah blah…You get the point.

Obviously, it’s a pretty boring and depressing party and I eventually get sick of being bored and depressed. But, by giving these feelings a start and end time, I am less likely to misdirect them and/or use destructive ways to cover them. 

SUBSTITUTE “I CAN…”

While it may seem like your body is failing you and outdoor physical activities are a struggle, it’s helpful to remind yourself of the physical activities you can do. I can hear my mom say as I write this, “There’s always someone worse.”

When I think about the physical activities I cannot do, I try to substitute the things I can do instead. My legs may not allow me to climb a mountain, but at least I have them and can use them to climb small hills.

VOLUNTEER AT CAMP, OR ANYWHERE

One of the proven ways (I’m sure there’s a study somewhere) to feel good about yourself and your life, is to help others to do the same.

Many non-profit health organizations (including the MDA & CMTA) have free summer camps for kids that depend on volunteer staff. Some of the children who attend these camps have severe physical limitations.

Volunteers are a part of providing these children with life-changing summer experiences. What better way to simultaneously change your perspective and your own life for the better.

AVOID THE ONLINE NEGATIVITY

I know a lot of people love and depend on online support groups, but I am personally, not a huge fan. Although there are a ton of awesome people in these groups giving one another support and valuable advice, there are way too many Debby Downer types (sorry to those named Debby) dominating the posts. The awesome people aren’t on them 24/7 as they are too busy living.

When you have Seasonal Self-Pity Syndrome, social media should be avoided in general if it doesn’t make you feel good.

BE TREND-ABLE

This would be considered blatant self-promotion if I was selling something on the website, but I am not. I created the Trend-able website to help women who have invisible disabilities look and feel their best.

If you wear orthotics or afos, check out the Trends page for some shoe inspiration. If you have a summer wedding and don’t know what to wear and/or dread going to a pool, read my blogs on Cocktail Parties and Resort Pool Tips. Learn some new techniques and trends you can wear and use.

Then, treat yourself to something new and spring-like. Buy a bright shade of lipgloss instead of neutral or change your hair part to the other side.

Embrace the change of season by making small feel good changes to your appearance and everyday routine.

 

 

 

29 Comments

  1. Thank you, Lainie! I used to facilitate a CMT support group, but did sort of get burnt out on the “downers” in the group. I consider myself a “ glass half-full” kind of gal, and enjoy a good dose of positivity pretty much all the time! But, I am also practical and realistic and yeah, I mourn the loss of no longer wearing strappy sandals. I work on my attitude and smile, and relationships with people, so I hope they barely notice those blue plastic “shin guards” on my legs. I’d love to pity party with you sometime! 🤪

  2. So so true. I’m feeling a bit like that now.
    Although I have banished those gauntlet braces to the garage cabinet, it still leaves me with my orthotic and boots, hiking, work, or cowboy, in summertime. And, the frosting on the cake, that weight I lost, well it must of been in the lost and found box and found me again!
    Great article, enjoyed it!

    • Lois,

      I hope you can shift your focus and not worry about the weight coming back. If it’s something you want, it will happen. You are being too hard on yourself. I really appreciate your comments always.

  3. Yes, yes, yes. Exactly how I feel at this time of year. In fact here in the UK, spring’s been a while coming (due this Wednesday, according to the weather report), and while everyone around me is moaning about it, I’m quite happy that the Summer Clothing Dilemmas haven’t started yet.

    This year, I’ve decided my solution is going to be to make the clothes I need to go with the only kind of shoes I can wear these days – basically wide fitting high top trainers. I can never find nice, lightweight trousers in the kind of shape that works (and not cropped, obvs), so I’ll sew them myself. That’s the plan anyway!

  4. Well, that explains it! When the weather changes and I can no longer hide my AFOs under long pants and layers, I get a bit weepy. Pity party with Netflix, for sure. Thanks for letting me know I’m not alone, and giving me some truly helpful ideas to re-direct my thinking, Lainie. XO

  5. Oh Lainie I love your spirit !! It truly feels like you “hit” on what I’m feeling at the moment and allow me to realize that, “All is good”. I too avoid support groups and am much more of an “I can” girl; however, I feel everything you write about so thank you for your inspiration. I call my braces my “Super Hero Shins” !! They allow me to do things that I otherwise could not do. I’m loving your blog and the “perfectly imperfect” tribe !!

    • Kimie,

      You truly made my day by quoting the ”perfectly imperfect tribe” part 😀 I don’t have a name for my braces but I might steal yours😀 Thank you sooooo much for the awesome message.

  6. Yes, yes, yes! I so wish I could slip on flip flops this time of year. Thanks for putting this out there- it’s nice to know I’m not alone in my sadness and good reminder to focus on the positive. 🌸💜🌴

  7. Hi Laine. I have been sick with the flu going on 3 weeks. Feeling alone being ill, then spring coming thinking about shoes with no socks how cute they are. How I wish I could wear them??? Then the cookouts. I can wear the sundress, the braces can be cumbersome. It’s just the way I feel right now. I agreed I need to accept these feelings or they come out in other ways.

    Thanks for your website
    Margie

  8. Lainie, this is going to be my first summer with AFOs and I must say I’m experiencing a lot of what you write about. I just switched my closet with the stuff in the basement and left my skirts down there (for now). That was pretty sad. I really don’t like hot legs, so will have to see how that all goes. I’m trying so hard to embrace my new reality but it’s a big change! I really appreciate you putting it all out there for us. I don’t feel alone any more!! P.S., I did find some cute sandals at DSW that fit my Noodles and kinda camoflage them! It’s the little things….. ;-P

    • Hi Reeve,

      So happy you found some cute sandals that work 😀😀😀 It’s all gonna be ok as the afo’s will allow you to do more now than you did last summer.

    • Hi Reeve! I also wear a Noodle AFO, and I have been struggling to find sandals that work. Would you mind sharing the brand/style? This will be my second summer and I have only just recently been brave enough to try something other than tennis shoes.

  9. I feel this so much! I’ve dealt with my disability my whole life, but spring always makes me feel a little pity for myself. But I still wear sundresses pretty much every day, no amount of pity can stop me!

  10. Yes, Lainie! I feel every word of this…what a eloquent and beautiful piece! Thank you for reminding me of the many people who would trade places with me in a heart beat. I try to stay as grateful as possible but we all have our days and moments of foot envy. I’ve recently traded in my long maxi dresses for some short summer dresses and am less concerned when people take a double-look at my accompanying leather knee boots. Confidence looks good on everyone and the summer breeze feels great on my legs…sweaty feet and all. <3

  11. I love this! I agree with you about the online communities. I keep trying to find one, but they get so negative it ends up making me feel worse. Fall is the best, because with my fibro I’ve found blundstones are oddly the best footwear for me. But summer? ugh. Everything hurts. Maybe, at the age of 48, I need to learn to rock the cut-offs and blundstone look. lol! Keep being positive. We need some chronic illness fun and we also need to be able to feel pretty.

  12. I’m 68 now. Way far back in time, I wore saddle shoes with a pretty dress to my 8th grade graduation. The only “dressy” shoes available in size 2-1/2 3E back then were black patent-leather Mary Janes with a buckle in the middle, which were worn only by kids under 8: I did not want anyone to think I chose them on purpose! Horrors! So wearing saddle shoes made it obvious I had some kind of foot problem and not a bad fashion sense! It’s still a big problem for me to get shoes on my funky feet, cause of CMT and surgeries and orthotics. But I’m still able to walk and I had the time of my life camping and travelling. I even hitchhiked in Europe after college graduation in the early 70’s. I had a great partner and a great job and still have great friends and a good, but less adventurous life. No one can be positive 24/7, but it’s a great idea to party when you can. I like the idea of hosting a pity party in the summer; maybe I can require my guests to wear heavy socks and shoes with their shorts!

    • 😂😂😂😂 I can just picture a bunch of people sizzling in their heavy socks & shoes at your pity party. I’m flying in if you do it. I love your outlook. Thanks gor commenting.

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