10 Things I’m Afraid Of (With MS)

Recently I ripped off the popular podcast Ten Things I’m Afraid Of by posting my own morbid list on my Insta stories, but with the added qualifier ‘with MS’. Because everyone already knows centipedes and talking on the phone are scarier than death.

Send a text like a normal person.

If you have MS, a healthy fear of prescription costs, PML, and progression are probably already on your radar. Rest assured this light-hearted list is not meant to jack up your anxiety about everything that can go wrong when you have this disease. This is about airing my own brand of neurosis that maybe some of you can relate to. If you don’t have MS, consider this tally a touch of insight into the day-to-day drama of coping with a chronic illness.

Ten Things I’m Afraid Of With MS

1. Dropping Things

I drop stuff all the effing time. Ask The Banker or the dog how many times a day I drop my cane on the hardwood (it’s 87) and they will slowly shake their heads in silent rage. Sometimes I drop something, pick it up, then drop it again. If I’m in a good mood, I assume the universe is providing me with free physio, then give myself permission to skip the gym. That’s a level one drop.

A level two drop is a bit more consequential. Like the time I dropped my cute cigar-box purse at a production of Mary Poppins spilling all my tamps and caths into the aisle. Despite my protests, the stranger-man next to me insisted on picking up my swag until he realized what he was touching. That’s fine, he should grow up.

Because the very, very worst, level 3 shit to drop is something that breaks. Especially if that something is full of liquid, like smoothie or vase-water, and I’m all alone and have to clean it up before someone eats broken glass and the floor turns blueberry. My lack of balance and shoddy hip-flexors make this a Survivor-level challenge where the only reward is that the dog’s not bleeding and I no longer have breakfast.

Oh, what treasures do you hold?

2. Rain

My fear of rain as someone with MS has everything to do with not wanting to wreck my blow-out, because blow-drying my own hair is a fucking nightmare, and it’s impossible to wrangle an umbrella and a rollator at the same time. When I posted this fear on Insta, someone was like, why don’t you just get a rain hat? I don’t know, Becky. Why don’t I just leave the house in a shower cap?

3. Jekyll and Hyde-ing

One day, about a month ago, I woke up without pain. As I found myself assessing this unfamiliar phenomenon, I also realized I’d somehow slept through the night. I felt like singing, or at the very least not scowling. And then I was like, hold up. What is this feeling and who am I?

What if I have this whole other (way better) personality without pain and insomnia? I’m a skosh afraid that having MS facilitates a bitchier, harder-to-be-around version of moi than the ray of sunshine I might have been in an alternate reality. Damn, Becky. I’m sorry for my tone earlier. Thank you for the suggestion.

Update: I just googled rain hats, and Becky can go to hell.

4. Being cold

I’m cold right now, but I’m also afraid of being cold in the future. MS means my temperature regulation is broken, but my anxiety is working just fine. I can work myself up into a state in July thinking about how much January is going to suck in this cold Canadian tundra. Recently, my order of Little Hotties got lost on Amazon and I had to go without this life-saving, foot-warming product for five excruciating days. You don’t even know. Now I feel like I have to stockpile them so that this never happens again. I’m afraid my fear of freezing will turn me into an MS Doomsday Prepper.

5. Speaking of doomsday prepping…

I have too many purses, so I try to make sure there are a few disposable caths in every bag (too much catheter talk? welcome to MS), but occasionally I fuck this up (not to mention I recently discovered that caths for real expire, which does not help my doomsday plan).

One time, after I’d left to do my Lemtrada labs and get a hair appointment, I realized I was sans Cathy when it came time to give my urine sample. This was especially troubling because I’d been saving my pee for the test, and I needed to go. No worries, I thought. I bet the lab has some. They did not. Fortunately, we were next door to a pharmacy. But when I asked, they were like “ew, no”. Okay, they didn’t say ‘ew’ but they might as well have.

That forgotten pee-mate almost caused me to pee my pants (ironic, I know), forced me to return to the lab with a urine sample, made me miss my hair appointment, and cost me an extra $14.67 in round-trip Ubers. In addition to the price of the tiny plastic tube (you don’t wanna know), this particular pee cost more money than the time I was in France and didn’t have any coins for the pay toilet AT A BAR, which meant I had to buy a drink just so I could pee, creating a vicious cycle. Bien joué, Frenchie, bien joué.

6. Getting a cold

If you need a refresher on what getting sick can do to MS, please click here. My fear of flu makes me terrified of hospitals, holiday parties, and most of all, children.

“What’s that scent you’re wearing?”

“Oh, do you like it?”


“That’s because it’s Purell and Clorox.”

It’s not me. It’s you.

7. Seatbelt sign

There are a million things to do before a big trip, and they all come to a head at the last minute. That sigh of relief you breathe once you’re through security, checked into your flight, and ready to check out of your life is what a cocktail at the airport bar tastes like. Oh, my flight’s delayed? That’s cool. I have time for one more vodka soda (soda because it’s important to hydrate). Bonus points if you’re flying Air France where I defy anyone to not drink the wine in those adorable mini bottles.

So, it’s pretty freaking rude, airlines, to ply us like this and then tie us to our chairs and turn on the seatbelt sign. You know you’re just messing with us anyway. Like, I’m not that good at walking, but even I feel like I can handle it basically every time.

I stand with you, Gérard Depardieu.

8. Stranger danger

I don’t have any confirmed cognitive decline (update: I do now!); the lesion load on my brain is light in comparison to that of my spinal cord, where all my damage likes to party. I will cop to having difficulty focusing on any task when there’s competing noise. If you want to talk to me and the radio’s on we’re gonna have a problem.

My real cognitive problem is that I don’t recognize faces. Like, unless we’re related, or we’ve made out (and even then), I’m not gonna recognize you. Dear everyone in my building, I may have had five separate convos with you in the elevator this month, and if I see you at Ezra’s Pound I won’t know who you are.

My ability to rock a blank stare whenever someone thinks I should know them has earned me the reputation of a witch with a b. Luckily, that’s kind of who I am anyway.

9. My world shrinking with MS

MS can take a lot. What’s more maddening to me is what’s taken that doesn’t have to be. As my mobility needs change, I fear my world getting smaller as fewer spaces are available to me. I fear being disabled by my environment as much as by my body. Ok, this one’s a true bummer. Let’s move on.

10. Fish sticks or salisbury steak?

I mostly subscribe to the philosophy that fear is a waste of my imagination; but sometimes I let my flights of fancy run the show, and that’s when I visit a future day-mare where I don’t get to make all my own choices. Seems reasonable, right? Here’s where I lose you.

The choices I’m prematurely wigging out over are food choices. Like, I did not spend the best years of my life cultivating a palate that appreciates stinky cheese and truffle salt only to spend my senior years in a care facility eating boxed potatoes and off-brand chips. I am way less worried about condescending nurses who speak to the elderly in baby-talk than I am about the possibility of being served baby-food. Did you know that most of these places don’t even have a bar???

So, what are you afraid of with MS?

Roosevelt famously blah blah’d about fear being the real enemy, and I will co-sign that fear is the worst symptom of MS. That said, I feel like Roosevelt didn’t totally fact-check his whole thesis, because needing to pee without access to a bathroom is hardly unjustified terror.

Do these fears resonate? Comment on what you’re afraid of with MS, and check out the original podcast.

Follow Tripping On Air on Facebook and Instagram.

76 thoughts on “10 Things I’m Afraid Of (With MS)

  1. Hi, I can so relate with you and all you are saying. I like your humor and your sadness.
    My biggest fear is to lose my indipendence…
    Cheers Bärbel

    1. Omg !!! The most relatable blogger EVAHHHH!!!!

      Pretty sure we are sisters. Maybe talk to your mom or dad about this possibility ???

      I’m STILL trying to make peace with “Kanye” …. but you are getting me closer. Thank you !!

  2. At PT and I have to pee. If I go out to see a movie or event, I make sure to overdo salty food to dehydrate myself.
    Major fear is inconveniencing someone and having them “snark” at me.

  3. I love your writing style and ability to lighten a situation. It’s hard to laugh when things seem dire, but you certainly manage to introduce humour without minimizing the situation. Keep these articles coming!

  4. 1. Heat – not cold. Heat – above 75F, then I am melting into a function-less bowl of nerves that just do not want to function. Brain gets flacid, legs don’t want to work, a fan, spray bottle of water and lots of cold tea keeps me lucid.
    2. Falling down – I have very little leg strength (quads and hammies) and need human help or a winch, or a crane to get me back up to standing. Once I make certain only my pride is injured I get to 2 Tylenol and then…I have mastered the art of tush walking over to my basement stairs at home where I can put my legs two step down and pull myself up using the handrails. (thankfully it has been a number of years!)
    3. Rain, only kind of, I live in Seattle and as most everyone knows, it is a wet city. It is really the wet leaves and stuff that drive me nuts using my crutches. Any deterius in the damp is a potential slippery thing that can render me unstable.

      1. I live in Phoenix too, and the best can slay me. If I go from my work to my air conditioned car to my home, I can usually survive without too much trouble. I’ve just been falling more now. I want this to stop.

        1. Weather can be so hard to manage. Have you tried any of the cooling products out there? A Koldtec towel around your neck might be a big help for trips to and from the car.

  5. You NAILED it! The level drops are brilliant. In my head as I’m reading this I’m hearing level 3 drop in the bedroom, level three drop in the bedroom. If only it were that easy. I live alone so sometimes the stuff I drop has to stay on the floor until somebody comes to see me. I would add a level four, and that’s when my body drops to the floor unannounced. This one is really fun when you live alone.

    I am so glad to know that I am not the only one who fears competing noise. Every Tuesday when the landscapers come to my office and rev up that leaf blower I feel like running (if only) and hiding in a sound proof room. It literally jacks up my anxiety level to the point I feel like the cartoon cat with its claws on digging into the ceiling hanging on for dear life.

    This post made my day, thanks for the laugh (and the all to real cry) that comes with each of these when they happen.

    1. Fear of falling was in my original Insta stories. I fractured my elbow from a fall a couple years ago, and another time I fell backwards off a curb into a parking lot and cracked open my skull. Fear of falling is real. I left it off this list because I was trying to keep it light, but you’re so right. It belongs in level 4. Thanks for reading and commenting!

  6. Fear of falling is a truth. Every time I have a bad fall, which means when I fall and break something, like a femur, hip, collarbone, 3 ribs or a wrist, I never fully recover. Maybe it’s because I’m 5’11”, but falling really brings me down

    I relate to you. Thank you for the honestly. We need to share our truth. But I too am a believer in laughter, even if sometimes tears are involved. Keep up your excellence Please. Xox

  7. Trigeminal Neuralgia. It’s horrifying and I want to kill my self when it happens. I bargain with god and plead with him. No real cure, let’s give you more meds to dull the pain and make you more off balance.

    1. Amen sister, I made my dentist pull 2 teeth because I was convinced it would make it stop hurting. He won’t pull anymore, he wants me to go to a dental surgeon and talk about laser surgery cutting the trigeminal nerve. I decided, NOPE! Thankfully it subsided after a few months of hell.

    2. I’m so sorry you’re dealing with this. I’ve never experienced it myself, but I know how miserable the dysesthesia in my feet is and I think it’s nothing compared to this. hugs to you

    3. I fear that one too, had it for 3 years, had teeth pulled, went thru some voodoo kinds of treatments just searching for relief, spent thousands of dollars only to have it just leave on its own. Now the slightest twinge in my jaw freaks me out

  8. Hmmm my fears… Falling in front of my loved ones. I could care less in front of strangers. Weird eh (yes I’m Canadian). Another fear having apee/poop accident out in public. Ohhh the best is hitting a bump with my wheelchair and flying out. This did happen. I was mortified inside but outwardly handled it with grace. The worst fear is to not be able to hold my newborn grand daughter.

    1. I’ve found that supporting my arms with lots of pillows and having a ‘spotter’ on hand has helped me hold the littles. Fingers crossed that you will be able to snuggle your sweet girl as much possible.

  9. Omg..I fear all that you do..are you sure were not sisters..but my BIGGEST fear is falling especially in the middle of the road and not being able to get up and getting run over..2-is fear of my family telling me what I should be doing..friggin hate being told what to do..and I have the best words of reply to that..3- going into a facility and having a swallowing test and being told I have to eat baby food and I’ve seen it for real and it looks like shit..4 – them telling me I have to turn my lights out because it’s bed time..I’ve seen that too..4 – sorry you can’t swallow so no food and a tube feed..seen that too..5 -not being able to do up my seat belt so have to stay home..almost happened..6 – having my licence to drive taken away. I don’t go very far.. had that happen too but I got it back..7 – having to ride my scooter instead of driving..8- going to town and not being able to lift my little scooter out of the trunk because it’s too friggin heavy..that’s a reality already..9 – not being able too get out of the tub..almost had that happen..10 – my husband calling the fire department to get me out..never had that happen..?

      1. People do say the dumbest things thinking they’re helping.
        I fear the rain as well. I use my left arm/hand for my cane, carry my purse in my right hand. My right side is weak so I can’t hold up an umbrella. Instead I have a hooded rain jacket but if it’s windy the hood gets blown off. It’s a never ending battle.

  10. Sometimes, I leave a restaurant after drinking a liquid. I don’t use the facilities before I leave. I want to test myself to find out if I can hold it in till I get home.
    I’m scared that I will lose control of my sphincter muscles. So far I haven’t.

  11. Falling is a big one. I fall in slow motion so I don’t break! The body fluids (and solids) accident in public (therefore having to wear diapers). Loss of independence. Being unable to travel any more.

    Great article. J love your writing!

  12. Seeing embarrassment on my 16 year old son’s face. So far he’s been able to take public urination in his stride so maybe he’s already mastered a poker face or is telling the truth when he says he’s fine.

    1. I bet he is telling the truth. Kids of people with disabilities grow up to be more compassionate adults. You’re teaching him a lot just by living with this beast of a disease.

  13. Independence is gone. I’ve had to give up driving, I’ve been fitted for a wheelchair and a stairlift is being put into my house this morning. The thing I fear losing most though is my sense of humour. That is one thing MS can never take from me.

  14. Fear that my electric shocks will prevent me from walking permanently. For now, I get 20 or so a day, but ramping up. All because my Dr tells me no active disease, no treatment. Walk a mile in my shoes, or 10 steps.

  15. The stares. I hate the stares where people are trying to figure out what someone so young and kinda well kept is using a cane. I want to say it’s because you’re crowding me in the dairy section of the grocery store but I smile and let them draw their own conclusions. I’m tired of smiling for their benefit and comfort. I mostly consume wine at home even though I’m dying for someone else to pour it, but my husband and dog are used to me wavering after a glass. And the simple truth is that they don’t stare?

    1. When they stare, just ask if they like your fashion accessory and tell them that it’s all the rage and that they should get one because canes are really cool! If they tell you that you are crazy then just stare blankly and tell them that you don’t know what they are talking about.

  16. I’m sitting outside a psychiatrist’s office at a hospital waiting for him to call me. I watch doctors, nurses and staff hurry by looking like they have something to do somewhere. They look important. Next time, I am going to drape a stethoscope around my neck and wear an identity card clipped to my belt above my crotch. Then I will sit outside my psychiatrist’s office and glare at the important people.
    I dread being in a hospital as an in-patient. With a catheter poked in my urethra and wearing an adult diaper. Having to eat the food prescribed by a dietician. I am scared of being in a hospital where everyone knows what’s good for you but you don’t.

    1. Loss of independence is a terrible fear. And an eventual reality for many with or without MS. Makes a good case for investing in the care of the elderly across the board.

  17. Effects of climate change of course, IDK why? I’m now 56. Now write some cool, funny stuff about that 😛 It just triggers me every which way and to no end, to know that billions will suffer and die while having too much; all the while billions suffer and die from having not enough. I guess I’m not really that pissed about getting MS.

  18. I enjoyed reading this article, I really relate to dark humor! I feel that is one of the things that has helped me to overcome and understand myself and this new path I am on!! Losing my independence is definitely the scariest for me! But all the others really hit home as well!! Thank you so much for this!!??

  19. I fear:
    1.The world goes to sh*t and I can’t get my medicine for trigeminal neurologia
    2.Zombie apocalypse and since I can’t run I either get eaten right off or I am stuck on a roof to starve to death
    3.Falling over. I can’t pop up fast to yell “ I’m good” and speed away fast enough before people start making a big deal about it.
    4.Being told I can’t have regular food cause I choke. I will risk pneumonia or death before I give up cereal, bread and oreos forever.
    I actually spend time thinking about all of these.
    Btw your blog is hilarious

  20. I was just diagnosed at the Mayo Clinic a month ago. I’m 50 years old. Going through a divorce after 22+ years of marriage with 4 kids still under the age of 18. I still manage to smile and laugh a lot! Because, that just who I am, but I have days where I’m so sad and scared. Usually in Sunday’s (don’t ask me why?). I am still relatively healthy and mobile. I am Imbalanced, have the tingling and numbness in my feet and the feeling of being in a fog, all which decreased significantly with the 5 days of steroid infusions. However, someone dropped the ball on getting me started on the MS medication and it’s been a month since the steroids and now the symptoms are beginning to return. I’m just very sad about it all, like no one gives a shit and they just sit at their desks privately thanking God that it’s not them with MS. I am thinking of taking ocrevus and I definitely have fears associated with it and just everything. I’m glad I found this blog and other people who share my fears. I am hoping to find a local support group, as well. Prayers for everyone here who are fighting this disease. ❤️

    1. Hi Melanie,

      It’s encouraging that you responded to steroids, and I hope you can get your treatment details sorted as soon possible. That sounds maddening. One thing you learn early with this disease is that you have to advocate for yourself. Be informed and be a squeaky wheel.

      Hang in there. It sounds like you’re doing all the right things.

  21. 1. I think my worst fear is what would happen if my left hand and arm stopped working. It’s amazing what you can learn to do one handed, I too experience weakness on my right side. And when I say weakness, I mean the hand doesn’t work and neither does the foot.
    Unfortunately the hair thing also resonates. My goodness, I don’t know how many times I’ve asked why God couldn’t have blessed me with wash and wear hair lol…instead of my sister! Blow drying and curling with one hand sucks.

    Actually, everything on your list resonates. I love the dropping levels and the person who added level 4 is so right.

    2. Fear of falling, definitely. Thank God I have never broken anything, except once my head lol. Good thing it’s hard or I could have really gotten hurt. Although the “almost losing my balance” is kind of scary, it’s nothing compared to that helpless, slow motion feeling of falling and a) wondering what you’re going to hurt and b) wondering how you’re going to get back up again if you’re by yourself.
    3. Temperature – yes! Although going through menopause has certainly helped with the coldness part…cue the hot flash. I like your idea about the hotties for your feet. Much faster than warm socks and slippers. Hot and humid? No thanks, I’ll just stay here in the air conditioning. This winter hubby and I are going to Arizona for 3 months and I’m looking forward to the dry air. Florida’s nice and I love the ocean but the humidity kills me.

    Again I have to say, I feel like you’re in my head. I love reading your posts and the way you keep it real. Keep rocking the glamorous walking with a cane or Optimus Prime look!

  22. I think losing the ability to care for myself. Lost use of my right arm and to a great extent my right leg, I have regain their use, which was basically a shocking look into my possible future scared the living hell out of me!

  23. I’m newly diagnosed (2 weeks ago) and I hadn’t even considered a few of your worse fears. Right now, the unknown is my greatest fear and losing my independence. Mostly I’m very pissed off I have this disease when I’ve done all the “right” things for optimal health and vitality.
    Your writing has given many of the emotions I feel a “voice” since my cognitive skills have been altered and I have a difficult time finding the right words, if I can find them at all.

    1. Hi Rhonda,

      I’m sorry to hear of your diagnosis. I hope you’ve got a doctor you like and are on the same page with. Diagnosis can be such a scary time, but there’s a lot to be hopeful about.

  24. Wonderful read.. one of my biggest fears is having to run.. I can’t. When I was slowly showing symptoms of MS in the ‘80s, I tried to ski. In my mid-30’s I should have known better, but as an athletic youth, my body’s decline wasn’t that apparent yet. So one season after another I blew out each knee..ligaments and more. Several years later the doctors were finally confident my reconstructive surgery would work after 4 operations. But the outcome with my soon-to-be diagnosed MS and challenged balance, coordination, and feeling enabled me to walk, however I can’t run to save my or my kids’ lives.

  25. Heavy doors.
    The kind you have to somehow push open with one arm while your other arm tries to pull along that walker you need to actually stand up…
    Or the kind, albiet unknowing, person who holds open that heavy door, then stands directly in your way.
    I didn’t want to go into that building anyway.

  26. Thank you so much for this article that gives voice to so many of my own fears. I am also grateful for the helpful encouraging posts about the article. I too like the level system for dropped things and support whole heartedly adding a level 4. I fear dropping medications and my dog, who tries to eat every crumb that hits the floor, overdosing or dying because she gobbled up a dropped pill or two or three… heavy bathroom doors are a nightmare with a 4 wheeled walker. Poo and pee accidents and urgency are life altering fears. I also fear places that only have one toilet that is likely taken when my sphincter is about to call it quits. I also fear falling in public and people making a big deal out of it. My PT gave me a great response for concerned witnesses of a fall to help calm them, but with my cognitive difficulties, I have forgotten it! ; )

    This article is wonderful af! Keep keeping it real.

  27. My biggest fear is what happens when the laughter stops. Right now it’s gets us through everything, holds us together like glue & keeps me ok with falling all the damn time & well, living. My 2nd biggest is that a real emergency will happen and my people will NOT just leave me behind as I have instructed them. All I need is a big fuss to save me and then my husband or daughter dies of smoke inhalation. SAVE YOURSELF I SAY. LEAVE ME BEHIND. AND I MEAN IT. It’s been a good run, but we have loved and laughed low these many years together. Do not be sad. Whatever happened to me, I’m glad you saved yourself. …but really they almost never listen to me.

    Wow. Those were kinda dark. Felt good to write them down. LOVE YOUR BLOG!

  28. Get so over heated. can’t drive. That is some scary shit.

    Didn’t realize u took Lemtrada. I am on Ocrevus. My party is in the spinal cord also. Sucks for my legs.

  29. Enjoyed this article. Usually, just feel angry after reading. This time the humor really came through. Still edged, but tolerable. It’s the ventilator that I fear. The Hospital bed & Ventilator. I’ve been ISC for a decade. That no longer scares me. Foley? Pffffttttt! But that Ventilator? That sound. The need. Welcome to another small death.

  30. Fear of losing my eyesight (after several bouts of optical neuritis) is at the top of my list. But a close second is having no toilet available when I need it (that is my reason for hating the seatbelt sign…). I’ve been in a couple very embarassing situations before making my peace with having to rely on catheters and sparkly pants (I refuse to use the D word!) at the age of 28 – your post on bladder issues really helped me with that!

  31. I have this fear of being rejected, because of my condition and mostly because that’s one of the reasons my past relationship ended.

    1. oh and the end progression of MS, which nobody knows when and how can MS effect child, another reason why being with someone is scary, actually thinking about adopting instead, too many people anyway.

  32. Some of my fears: 1) big bowel blowout in public, 2) my daughters getting MS, 3) something happens to my arms. I rely on them so much for mobility (much to the disappointment of my Physical Therapist)! 4) can’t drive anymore (even with all my hand control accommodations).
    I love your site! Love how you named your caths “Cathy”!

    1. I fear the bowel issues, too!
      Sadly my fear that one of my kids would get MS happened. My 32 year old daughter was diagnosed with it when she was 19 years old.
      I sure did feel some guilt over that!
      She’s stable and living on her own in Denver.

  33. Ardra, I think what I fear most with M.S. are the unknowns in my future.
    Thank you for your blogs-the humor, the insightful thoughts, the profanity, the realness, and the hope. Laura

  34. My biggest fear is heat!! So much so that my husband and I are figuring out how we can live in MI in the summer then return to our home in TX for the winter.
    I have all the neck coolers, a fan that hangs around my neck, ice water bottle, and my beloved air conditioning. It still was so hard this summer with way too many over 100 degree days!

Leave a Comment

Your email address will not be published. Required fields are marked *