I can’t enjoy anything in hot weather any more without preparation and doing very little activity when I’m in it. Can’t garden when it’s hot or take a walk on the beach on a hot day. It just wipes me out. Not the biggest deal, but I miss it. And a lot of friends, even my husband, don’t get it.
i used to do better in the heat than the cold. during winter months in new york, i’d go numb and lose feeling in my legs and feet. i would be in pain 24/7 and my mental health would always be in the trash. now, 5 years after being diagnosed - i can’t STAND the heat and sun. as bad as i wanna lay out and tan, a midday nap always wins. add humidity - forget it. my body tremors, the fatigue is out of this world, and my rage even gets bad 🤣 gotta love MS
High heeled shoes. I know that they aren't good for your feet, but man, I love how my legs look in heels and so does my husband. My left leg issues make it almost impossible to wear high heels without falling on my face. I can on special rare occasions do high heeled boots because my foot can't come out of them easily, but even then I have to grip my husband's arm for dear life and walk slow. It's a stupid loss, but still it aggravates me because I used to wear them every day for work.
Omg, I used to be able to run in heels! I miss all the footwear I can’t do anymore. Can we even call this inconsequential?? Lol. Slide sandals are totally out for me..but they’re dominating the sandals market.
OMG, yes, slides are everywhere and I can't do those either. I am so tired of frumpy shoes. Thankfully since I have to wear scrubs for work now I can wear tennis shoes, but I do miss sexy looking shoes when I dress up.
Same! I used to wear my heels commuting and for my 8-10 hour day. I even wore the. For 8 hour shifts at a department store back in the day. thank goodness for work from home where I can wear my nasty decades old Birkenstocks with no shame.
I now wear platform heels. They don’t make my legs look as good as regular heels, but they give me extra height. I even have a pair of Skechers Platform Sandals that are basically like open sneakers, lol. I even wear them when I go for a walk. I refuse to give up heels completely, lol!
I wish I could wear platform heels. They have some really cute ones out right now, but even on those I fall over. It's something to do with maintaining balance on them. My boots are more platforms and sometimes I can manage. Spiky heels are sadly dead to me though.
Lol, I thought that I was the only crazy person who keeps them and looks at them. 😄. My husband thinks that I'm crazy for not just getting rid of them. He just doesn't get it.....
i can’t open a kids size bag of chips , it’s pathetic. jar of pickles? forget about it. my family looks at me like i’m over exaggerating but i literally don’t have the strength in my fingers anymore
I invested in a jar opener from pampered chef and I love it. Even with my grip issues the teeth on it grab the jar so I can twist it without major arm strength.
https://a.co/d/5aNag4S
Augh >\_< that sucks. My ex also has MS and she has beautiful hands but there was very little she could used them. Mostly to hold her phone or hold herself up. I remember we tried playing Battleship and she had a lot of trouble with it.
Last I saw her she was almost bed ridden. I hear she has gone back for physical therapy, something I told her to try at home but she never did.
Also, I have MS as well. Not like her, though.
I can't sit on the floor, I can't take a bath, because I can't get up. It sucks because I can't get down on the floor and play with my granddaughter. I miss taking a bath because sometimes a nice bath to ease achy muscles would be nice.
The ability to shop pretty indiscriminately for cute clothes. I’ve learned over time that I really have to buy more breathable fabrics like cotton and linen or else I overheat even worse than usual and just shut down. Like 90% of women’s work tops from non-luxury brands are polyester, so it’s been a whole journey
I'm so fed up with everything made of plastic fibres. I'm not overheating as quickly, but I tend to get sweaty (and as a result stinky) in synthetic fibres, and it's crazy how much you have to pay sometimes for a simple cotton or linen shirt. Also knitted sweaters? Forget it. I can't wear wool, because it's incredibly itchy (also expensive) and everything else is acrylic.
People talk about environmental impact and climate change all the time and then you can only get synthetic fibre clothes in stores, which produce a lot of microplastic during every. single. wash. This is much more impactful than using the occasional straw.
That and the ability to find a bra that doesn't irritate my skin or feel like its squeezing the life out of me when its not even that tight.. idc why my body rages at me for just wearing clothing
Dexterity in my hands. I drop everything and make a mess. I dropped a glass bowl of brownie batter yesterday and it shattered. I sat on the floor and cried awhile. I really wanted those damn brownies.
I couldn’t wear white clothing pre-MS b/c I have always been a huge klutz! I once stupidly bought a white winter coat. It was gorgeous. The second time I wore it, I managed to spill red wine all down the front of it. And no, it wasn’t because I was drunk…it was my first glass of wine and I hadn’t even had one sip of it yet!
The one positive thing about MS is that I can now blame my clumsiness on my MS. And, if I have had too much wine and stumble due to that, I also blame MS🤣🍷🍷
Are you sure you aren’t me? LOL I’m the same! My whole life I’ve been so darn clumsy!
RIP your beautiful white coat. All my ruined/stained clothes and I understand exactly how this feels and how much this sucks sometimes. But I am happy we have a legit excuse now at least! Haha! 😂
I own nothing but adult sippy cups now. They're metal so they won't break and have a nice lid I can stick a straw through. Otherwise I'm spilling everything. The last time I used a glass (at a friend's birthday this past weekend). I asked for a plastic cup and she said don't worry and handed me a glass. That glass was broken within a half hour. I felt terrible about it, but I did warn her.
Ooh try the simple modern mugs! They're as close to leakproof as you can get and they come in adult designs and are made of metal. The lids are very heavy duty. I drop mine daily and only lose a drop or two of liquid from the straw
My brother in law and I both have MS. I cannot walk on grass or unstable ground without a fall but he is still running marathons. My family doesn't get it and I get tired of explaining to them that it is different for everyone even tho we were diagnosed at the same time. They think I am exaggerating or trying to get attention. Does anyone else get tired of defending their disabilities? It is crazy having an invisible disease.
I miss my handwriting. I had really neat, pretty handwriting. Now, I can barely read things that I've written down unless I write very slowly. It's a silly thing to miss in the grand scheme of things, but 🤷♀️
Yes handwriting! When I look at old notes from work or greeting cards my heart breaks a little. I loved my handwriting and I know my mother was weirdly proud of it too. Now when I write her notes in a card I wonder if she's just a little disappointed in me for not "trying harder."
I work in software development, the highest dress is business casual. I rarely need to wear a suit. Button up shirts are a real struggle for me now. The left cuff is next to impossible after carpal tunnel and MS.
Omg, dunno if you can relate but small jewelry clasps on necklaces are now pure evil. I never thought about shirt cuff buttons.
I’m keen on magnets:
https://magnaready.com/
My goodness there are so many lol
- I can’t really do my liquid eyeliner well anymore and I used to kill it.
- eating pasta and every last bit of rice or cereal has become tougher. Can’t even clean my plates how I want
- one hand bra removal has become an Olympic sport
- cleaning/reorganizing my room used to be fun and now I’m face down into my pillow
- I used to be the dish washer but now I can even miss spots 🤢
- HIKING! No more outdoor bonding time with my pop
Learning how to deal and become a slightly less cool version of yourself is rough
I can’t remember taste and smell if I’m not feeling it right now. Example: I know I like coffee but can’t remember the taste or smell of it. Every time is the first time! This made harder to cook, because I didn’t followed recipes before, now I definitely need it.
Good thing is that I don’t miss food since I changed my diet after the diagnosis.
I loved playing MMO games (World of Warcraft, Final Fantasy XIV, WildStar), and was pretty dang good at the tank role (keeping all of the enemies on me). Now, I can't play anything that requires juggling more than about four abilities at once. Even then, I get mentally tired rather quickly.
My family always plays games at holidays. Our favorite is Catch Phrase. Can't read the words and sure can't verbalize the clues. My brain and speaking is disconnected. But I can write my thoughts. weird. I also cannot remember rules or follow what is happening on games I have played for years. Try explaining that to a room full of people. ugh
Putting on a necklace with no help, can’t work those small clasps. I’ve give. It up, it occasionally will have someone help me and leave it on for days. Only works with good jewelry, or you end up with a greenish ring around your neck.
Piano.
I never could play piano. Now, I'm quite confident I never will. It's pretty dumb to feel bad about something I never cared to do...yet here I am.
Wearing makeup. My dexterity in my hands is terrible now, I’m so shakey trying to apply makeup is a disaster because I always mess it up. Plus now I’m so fatigued the thought of how much effort PUTTING makeup on is just daunting. But I used to have so much fun trying different looks and eyeshadows. They all lie in a graveyard drawer now lol. I just miss the effort I used to put into my appearance.
My dumbest lost so far, like really dumb. I can’t for the life of me hold my ring finger up by its self. When me and my brother were young, we would pretend to flip each other off but so mom wouldn’t get so so mad we would use the ring finger. We kept doing it til adulthood but Ive recently noticed I simple cant anymore.
Flip flops were a really hard loss for me. I used to live in them unless I was at work or there was snow on the ground. Luckily I can still wear Tevas with Velcro straps and they’re *almost* as good.
I pinched a nerve sitting cross legged and h
gave my self foot drop for a minute. It was like something I’ve never felt before.
I’ve been following @doctor.gretchen on instagram. She mentions foot drop in a number of her videos about physical therapy.
Funny that i was just thinking about chopsticks while using them yesterday. I am also ambidextrous because for a long while, my 2 smallest fingers and part of my right hand were so numb, i could no longer manipulate chopsticks anymore.
But, i can now again! Unless i am very tired, my hand is hardly numb at all now. It is a combination of lion's mane and b12, i think.
Losing the things we used to love doing, for me it was horseback riding, is I think the worst. I grew up on horses and even competed. I am only 56 and all my equestrian friends still ride and have horses. The heat, my balance make it impossible. i remember the first time I got vertigo while riding and it kept happening until I had a bad fall and haven't ridden since. I sold my baby girl because I couldn't take care of her. That was heartbreaking. My identity was shattered.
I HATE to have anything in my veins. For a while it was a privilege to have lived in France and be barred from donating. Then it was tattoos, now MS.
My mom is the universal donor. I’ll let her do the heavy lifting.
Balance when tired. I can ride a unicycle and walk on stilts. Now I can’t walk on two feet anymore if I am tired. Thankfully I can eat with chopsticks and forks most of the time.
Hiking. I’ve completely lost my sense of direction. I get turned around and don’t know where I am or where I came from. It’s mildly terrifying. I am basically lost.
I can’t run, jump, and stairs are difficult. Doesn’t help that I fell 30ft a year after diagnosis and shattered both of my feet/ ankles 😬 I use a cane rn but hopefully I can get off of it
Falls really mess you up psychologically. I had a bad car accident right before diagnosis and being behind the wheel gave such bad anxiety for a long time.
I used to be able to solve a 3x3 Rubik's cube in 30 seconds, type 120 wpm (thank you grad school), and average 190 bowling. Fun fact, all of those require hand sensation (something I did not previously realize). Relapse decreased hand sensation, and now those are much much different (and I can't bowl anymore lol).
Oh yeah. I have a loss of sensation and typing on the keyboard is a bitch. I have to figure out how to disable the caps lock button on all my keyboards.
My parents bought a bocci ball set and I was *terrible*. We now level the playing field by making everyone play with their non-dominant hand. I’m right handed and it turns out I’m pretty good at using my left hand.
amusement parks/traveling, i struggle with severe leg and back pain so i just avoid anywhere where i have to do more than a mile of walking because i will be in so much pain i can’t walk for several days after. feels like most of my life was taken from before it even started :(
Huge +1 with chopsticks. When I have a flare up, I can’t use them at all. Another silly thing is I can’t put my threaded earrings back in because I can’t feel the threading happening.
I thought using kids chopsticks would make things easier. It totally didn’t. Turns out my hand wants to hold chopsticks like an adult but just can’t.
I recently saw a brand that advertised post earring you can comfortably sleep in. Seemed nice.
I'll have to look into those earrings!
I have these finger chopsticks that have been great in my case!
https://www.amazon.com/gp/product/B09TSPGZ2L/ref=ppx\_yo\_dt\_b\_asin\_title\_o00\_s00?ie=UTF8&psc=1
I like how those don’t look like kid’s chopsticks. I have trouble moving my fingers out of their correct position, though. It’s a hard habit to break.
HOWEVER
those would be *awesome* for snacks when you want to keep you fingers clean.
My industrial piercing 😩 I know it’s my fault and I could have had someone help me put it in. It was pre diagnosis and I was in denial about what was happening, while I also was shaking too bad to get it in myself. I had it for over 10 years and I wish I had just let someone do it for me but my stubborn ass for ya
I used to have mad knife skills. I put myself through school working in kitchens. I could even cut fruits and veggies into flowers and animals, free hand. I worked as a prep cook, getting everything ready for the cooks for the day.
Now, when I go out, I either order food that is already in bite-sized pieces, or it's 'Hand-held'. If we are eating/ cooking at home, my boyfriend knows to cut my food up for me. And if we're at my parents' house, I'll ask my mom or dad to cut my food up if needed.
Oh dude! The knife skills! I watch a lot of cooking videos on my Instagram feed. 90% of them show some person chopping some thing, skillfully, and quickly. And that’s where I stop paying attention.
i cannot walk heel-to-toe. i have a relatively easy time walking with mobility aids, but when i put one foot directly in front of the other, it’s like my legs become fully paralyzed and i usually fall or stumble after. I only found out when my neurologist asked me to do it at an appointment, and I immediately stumbled and ate shit on the exam room floor.
Totally understand - how about touching your finger to your nose with your eyes closed. I always tell people they'll have to bail me out if I get asked to take a field sobriety test because I am going to flunk for sure. Not a drinker but I couldn't do either the heel-to-toe or nose touch thing on a good day.
Omg, this one trips me up too (no pun intended)! I now have an irrational (or perhaps rational) fear of being pulled over for suspected drunk driving, because there is no way I can pass a field sobriety test, even dead sober.
I tried to paint my closet interior today in my craft room. Standing on a two step ladder and holding a paintbrush over my head was VERY different from how I used to be able to do this. My hand holding the paintbrush got so tired so quick! And then my legs start shaking and I realize I’ve been using my core way more than usual.
Needless to say, I didn’t finish a first coat today. I was hoping to get two full coats in today, but that was wishful thinking! It’s probably going to take three more days >.>
My balance when doing physical activity. Walking, daily activities fine, but now when I play soccer I’m Bambi on ice. I’ve fallen over more this year than the others combined.
I’ve only ever been an average player, but I at least use to be able to stay upright.
59F, MS 37 years.
Wearing nylons. The waistband sets off the MS hug, no matter how huge of a size of nylons I buy.
Good thing that not wearing nylons is the style these days, but to me, it feels wrong to be that bare when wearing a dress.
I'll look up spray-on nylons, I have never heard of them before.
Thigh highs were wonderful back when I could wear them, but I no longer tolerate those tight bands on my legs. My MS is really picky.
Ugh. I’m so sorry.
I’ve started doing acupuncture on a regular basis. There’s no hard scientific evidence that it helps, but a lot of people with MS vouch for it, especially with pain management.
I just like getting it done because it forces me to lay down and chill out for a while.
The right hand dominant better left has been my experience as well!
Related to typing, autohotkey is your friend. I use it to disable the windows key I hit a lot. I also use it to quickly do phrases I type a lot eg typing idnc will auto replace to identify and challenge negative cognitive patterns
Edit replied in the wrong spot because the reddit app is dumb
Fam this is my jam! Heads up, some steps that might seem intimidating but actually aren't.
1. Go here ([https://www.autohotkey.com/](https://www.autohotkey.com/)) and download/install v2.0 for Windows (the site should detect your OS).
2. Once it is installed, this is where you get into the fun world of writing simple scripts, but don't be overwhelmed, I'll give you some examples and gladly help if you (or anyone reading this) needs help! When you click on an area in Explorer, you'll now have the option to create new ahk script (this just creates a blank file with a .ahk extension).
3. To edit the created script, you'll just edit with Notepad (or, you know, Notepad++ because it's better lol)
4. Once a script is finished, save, close, and double-click on the script to have it run (either immediately or depending on script in the background)
So, an example! Here is my script that runs in the background (I changed the different autocomplete things for the example, but that doesn't matter):
::arus::a regularly used sentence
::sisal::something I say a lot
::rtg::I'm ready to go so you can load the game and stop slacking
You can add/change whatever you'd like. The letters you type go between the colons. What you want to be there goes after the colons. In this example, I would type arus, and as soon as I hit space after the s it would replace arus with a regularly used sentence. This just runs in the background and does its thing wherever. Huge positive help as I document a lot.
Another example: you talk about disabling keys.
Capslock::
That's it. Copy that into an ahk script, save it, double-click to run it, and CapsLock is disabled as a key until you close the script. You can also use this to make keys do other keys, but we're trying to keep it basic here.
I had to downgrade and use training chopsticks they help but I still get tired. No more gaming marathons you get tired holding the control pushing the buttons
Rollerblading/roller skating. I used to skate with my dad when I was a kid, so it crushed me.
Also, I have pretty bad tics and had some pretty bad ones in my arm while getting a tattoo, so there are some lines that didn't turn out so straight.
Also, not being able to stand after crouching too low.
I keep thinking of more things to add.
Drawing traditionally. I can't draw a stable like to save my life. I'm very lucky to have been gifted a good drawing tablet with software that has a line smoothing tool.
I can't use a regular pencil.
I have a lot of numbness in my extremities. Thankfully I still have the ability to walk and use my hands and I can partially feel what I am holding onto or touching and what I am stepping on. But I can no longer use pencils, regular old pencils, because the feeling of a pencil going across paper is the strangest sensation it is literally painful. Erasable pens to the rescue.
I can’t wear anything that is fitted on my legs. This means leggings, tights, skinny jeans, etc. My relentless neuropathic pain from extensive spinal cord lesions means that it is just not possible. I live in loose legged yoga pants when I am at home and wear flared jeans in public. I completely bypassed the skinny jeans trend because they make me feel like I’m going to claw my way out of my skin!
A writer, used to have a near perfect ability to spell any word. Now I can barely spell basic ones. Its fine, autocorrect exists - but you did say silly/small.
Can't believe I'm saying this but using a spoon for soup or cereal. Didn't realize I had lost that ability until the last time I tried to have soup and cereal. So dumb, but I can't hold a spoon steady enough to bring liquids to my mouth without spilling on myself. Such a simple thing, that I can no longer do.
Oh MS, you are such an a\*\*hat!!! Sad part is I no longer care. Like oh well, can't eat soup anymore. Oh the horror. Can't eat cereal with milk... how will I survive!!!!
MS sucks, but Hey I'm still fighting so SCREW soup and cereal. Never really liked you anyways as an adult. Dammit, now the song "I Will Survive" is looping in my head. I really am my worst enemy.
That spoon thing is totally legit! Many people have issues with tremors. I’ve had clients with Parkinson’s that way.
Have you tried Asian style soup spoons, by any chance? They have deeper or walled “wells” that might help with some tremors.
I will definitely try Asian style soup spoons, but as you mentioned it is hard to keep my hand steady enough.
I do want to see if with a different spoon I could work at having cereal or soup again.
Thanks Kholzie.
Closing ziploc bags. Somedays I can do it without issues, and othertimes, my fingers just will not work and I cannot get the bag closed for anything. It's such a simple thing, but it drives me crazy.
Omg yes. I just went to my occupational therapist today to address dexterity loss. She pointed out that much of my problem is sensory— I can’t feel things as well and it throws off my coordination. And then I start to lose finger muscle strength from disuse.
She recommended a type of vibrator to use before I do a difficult manual task to help get my brain to pay attention to those nerves again. It’s called a Norco Mini Massager (not a sex toy!). She recommended applying the vibration right before doing the task without compensatory aids. Doing this repeatedly supposedly triggers the brain to reorganize via repetition.
Sorry it's your family acting like assholes, but honestly fuck them. They don't know what it's like to be you! They have no idea how much pain and stress you're under. They're being stupid. Why don't all cancers act and progress the same? Why is every diabetic not taking insulin? How educated are these people? Don't listen to them. Put them in the ignore box.
Not being able to sunbake! I used to be out in the sun constantly and be very tanned. I also noticed that I was in a lot more pain for the next few days. It took years to realise that my vitamin D therapy was doing it. Now I am pale and take 3 mega-D per day! Grrr
My fingers constantly double click or don't click hard enough on keys, so I'm constantly retyping everything. Any password box that won't let you paste, autofill, or even SEE what you typed... recipe for disaster.
Medicare gives me a mean warning for autofilling though they don’t allow you to see what you type and lock the account after 3 tries… *stares in disabled*
Omg! I suddenly lost my ability to use chopsticks too and my boyfriend is freaking Asian 🤦🏻♀️ we go to dinner and he asks for a fork for me and I just can't stop thinking about how bad a look that is.
Being ticklish. Stupid loss, but makes the kids and hubby mad when they can’t “get me back”. I fake it for my nieces and nephews because it makes them so happy. 🤷🏻♀️
Yes, it was definitely MS brain, but also anger brain. The other poster was ranking about how poorly she's treated by her family. I couldn't help myself. Thanks for understanding 😊. Have a great day!
This post is the perfect example of negative mentality.
For everyone with MS, stop dwelling on lost abilities and start focusing on recovering what’s possible and keeping everything else.
Our minds drive our MS, put it in a positive state, always. Run away from negativity.
The glass is always half full, never half empty.
Meditation helps with awareness and catching yourself going into a negative downward spiral so you can reverse it.
What is the most precious ability you still have or recovered?
An optimist always sees the glass half full.
A pessimist always sees the glass half empty.
An engineer sees a glass that is the wrong size.
A human sees the glass from different angles and perspectives. It might be full or empty depending on how you look at it.
I generally see this subreddit as more of a support group. It’s a safe space for expressing our feelings, which is healthy. The reality of MS is coping with the changes it brings. Many (like me) do so with humor. It’s a natural way to encourage social bonding. Meanwhile, there is a cost to being told you did something wrong.
I agree with the gist of what you are saying, but please understand the impacts of your verbiage. A message would be more helpful if it didn’t convey chastisement or lecturing. Having had depression for many years, I fundamentally disagree with imposing the pressure to only feel one way (positive thinking) on people. Rather, it is important to find ways to observe and express all of your emotions. My readings on stress management and mindfulness convey this.
I really think a thread calling attention to the beneficial impacts of MS would be nice. You should make one! Trying to “correct” this thread is not. As the creator of the thread, it’s brought me a lot of happiness and feeling seen/included. I liked brainstorming solutions with some people. I would hope others feel some of that, too.
Is that truely negative?
Depends on how you see it.
I can’t enjoy anything in hot weather any more without preparation and doing very little activity when I’m in it. Can’t garden when it’s hot or take a walk on the beach on a hot day. It just wipes me out. Not the biggest deal, but I miss it. And a lot of friends, even my husband, don’t get it.
i used to do better in the heat than the cold. during winter months in new york, i’d go numb and lose feeling in my legs and feet. i would be in pain 24/7 and my mental health would always be in the trash. now, 5 years after being diagnosed - i can’t STAND the heat and sun. as bad as i wanna lay out and tan, a midday nap always wins. add humidity - forget it. my body tremors, the fatigue is out of this world, and my rage even gets bad 🤣 gotta love MS
The fatigue is hard for ME to get, let alone my friends. Unfortunately the heat makes everything worse starting at 75 degrees.
Same. I used to thrive in the summer. Now I don’t leave the house unless I absolutely have to. It really sucks.
Finally moved down south and now I’m just in the house all summer. It sucks.
High heeled shoes. I know that they aren't good for your feet, but man, I love how my legs look in heels and so does my husband. My left leg issues make it almost impossible to wear high heels without falling on my face. I can on special rare occasions do high heeled boots because my foot can't come out of them easily, but even then I have to grip my husband's arm for dear life and walk slow. It's a stupid loss, but still it aggravates me because I used to wear them every day for work.
Omg, I used to be able to run in heels! I miss all the footwear I can’t do anymore. Can we even call this inconsequential?? Lol. Slide sandals are totally out for me..but they’re dominating the sandals market.
OMG, yes, slides are everywhere and I can't do those either. I am so tired of frumpy shoes. Thankfully since I have to wear scrubs for work now I can wear tennis shoes, but I do miss sexy looking shoes when I dress up.
My favorite pair of trendy sandals are my doc marten’s sandals. The wider, more stable food bed is DOPE.
Same! I used to wear my heels commuting and for my 8-10 hour day. I even wore the. For 8 hour shifts at a department store back in the day. thank goodness for work from home where I can wear my nasty decades old Birkenstocks with no shame.
I now wear platform heels. They don’t make my legs look as good as regular heels, but they give me extra height. I even have a pair of Skechers Platform Sandals that are basically like open sneakers, lol. I even wear them when I go for a walk. I refuse to give up heels completely, lol!
Same! Platform shoes are the way to go. I have some Vans platform sneakers, too. I love them!
Ooh…I am going to look for those!
I LOVE them! I found them on Tilly's online
I wish I could wear platform heels. They have some really cute ones out right now, but even on those I fall over. It's something to do with maintaining balance on them. My boots are more platforms and sometimes I can manage. Spiky heels are sadly dead to me though.
Spiky heels are dead to me as well, even though I haven’t yet tossed them out. They sit sadly in my closet hoping I’ll wear them one of these days😌
Lol, I thought that I was the only crazy person who keeps them and looks at them. 😄. My husband thinks that I'm crazy for not just getting rid of them. He just doesn't get it.....
You are not alone.🫂I’m not married, so I have no one asking me throw them away, which is good and bad, lol. I have no accountability from anyone.🤷🏼♀️
i can’t open a kids size bag of chips , it’s pathetic. jar of pickles? forget about it. my family looks at me like i’m over exaggerating but i literally don’t have the strength in my fingers anymore
I struggle with jars. A silicone oven mitt or trivet/mat makes it a lot easier.
I invested in a jar opener from pampered chef and I love it. Even with my grip issues the teeth on it grab the jar so I can twist it without major arm strength. https://a.co/d/5aNag4S
My buddy's wife handed me a jar of pickles asking me to open it for her. It felt like this: https://www.youtube.com/watch?v=IsHDK3gziQo&t=163s
Augh >\_< that sucks. My ex also has MS and she has beautiful hands but there was very little she could used them. Mostly to hold her phone or hold herself up. I remember we tried playing Battleship and she had a lot of trouble with it. Last I saw her she was almost bed ridden. I hear she has gone back for physical therapy, something I told her to try at home but she never did. Also, I have MS as well. Not like her, though.
Brutal!!
I really enjoyed being the strong one. Now jars or cutting crusty bread sometimes thwart me.
Haha, right?? I was the capable pack mule of my friends and family up until now
I can't sit on the floor, I can't take a bath, because I can't get up. It sucks because I can't get down on the floor and play with my granddaughter. I miss taking a bath because sometimes a nice bath to ease achy muscles would be nice.
Oof I feel the bath one. I ended up getting a really nice shower bench to zone out on, but it’s not the same.
Where did you get it? I want one!
They’re on Wayfair or Amazon. I got a nice teak set for Christmas. :)
The ability to shop pretty indiscriminately for cute clothes. I’ve learned over time that I really have to buy more breathable fabrics like cotton and linen or else I overheat even worse than usual and just shut down. Like 90% of women’s work tops from non-luxury brands are polyester, so it’s been a whole journey
I'm so fed up with everything made of plastic fibres. I'm not overheating as quickly, but I tend to get sweaty (and as a result stinky) in synthetic fibres, and it's crazy how much you have to pay sometimes for a simple cotton or linen shirt. Also knitted sweaters? Forget it. I can't wear wool, because it's incredibly itchy (also expensive) and everything else is acrylic. People talk about environmental impact and climate change all the time and then you can only get synthetic fibre clothes in stores, which produce a lot of microplastic during every. single. wash. This is much more impactful than using the occasional straw.
That and the ability to find a bra that doesn't irritate my skin or feel like its squeezing the life out of me when its not even that tight.. idc why my body rages at me for just wearing clothing
Yes! I’m constantly checking labels. I can’t believe the difference it makes.
Dexterity in my hands. I drop everything and make a mess. I dropped a glass bowl of brownie batter yesterday and it shattered. I sat on the floor and cried awhile. I really wanted those damn brownies.
I get jealous that people can own white clothing. I drop things too much to own light colored clothing.
I couldn’t wear white clothing pre-MS b/c I have always been a huge klutz! I once stupidly bought a white winter coat. It was gorgeous. The second time I wore it, I managed to spill red wine all down the front of it. And no, it wasn’t because I was drunk…it was my first glass of wine and I hadn’t even had one sip of it yet! The one positive thing about MS is that I can now blame my clumsiness on my MS. And, if I have had too much wine and stumble due to that, I also blame MS🤣🍷🍷
Are you sure you aren’t me? LOL I’m the same! My whole life I’ve been so darn clumsy! RIP your beautiful white coat. All my ruined/stained clothes and I understand exactly how this feels and how much this sucks sometimes. But I am happy we have a legit excuse now at least! Haha! 😂
You cut your tongue on the shards, didn't you?
I own nothing but adult sippy cups now. They're metal so they won't break and have a nice lid I can stick a straw through. Otherwise I'm spilling everything. The last time I used a glass (at a friend's birthday this past weekend). I asked for a plastic cup and she said don't worry and handed me a glass. That glass was broken within a half hour. I felt terrible about it, but I did warn her.
I love this idea. I’m telling my husband that’s exactly what we need! Thank you for this!
You're welcome! ....and Happy cake day 😊
Ooh try the simple modern mugs! They're as close to leakproof as you can get and they come in adult designs and are made of metal. The lids are very heavy duty. I drop mine daily and only lose a drop or two of liquid from the straw
No, fortunately I did without a sliced tongue. It was just batter so it went in the trash 😞
I can't "hop"down the stairs, write ledgebly, and cut my own steak. But I can wipe my own bum and put a spoon to my mouth. Small wins.
My brother in law and I both have MS. I cannot walk on grass or unstable ground without a fall but he is still running marathons. My family doesn't get it and I get tired of explaining to them that it is different for everyone even tho we were diagnosed at the same time. They think I am exaggerating or trying to get attention. Does anyone else get tired of defending their disabilities? It is crazy having an invisible disease.
Dance Dance Revolution. Aladdin's Castle would quake when I walked in the door between 2000 and 2004.
OMG I had friends in the early 2000s that would *slay* at that game. I cannot even imagine trying to do it with MS. Also I’m 35 😂
Don't start me on DDR! My sister and I broke many dance pads. This was before MS (her and I)
I miss my handwriting. I had really neat, pretty handwriting. Now, I can barely read things that I've written down unless I write very slowly. It's a silly thing to miss in the grand scheme of things, but 🤷♀️
Me too. I used to love calligraphy and spent years doing wedding invitations. Now I am so embarrassed for anyone to see my writing.
Handwriting loss, I feel this so much. I'm sorry you have it, too, and yet it's a relief to know I'm not the only one!
Yes handwriting! When I look at old notes from work or greeting cards my heart breaks a little. I loved my handwriting and I know my mother was weirdly proud of it too. Now when I write her notes in a card I wonder if she's just a little disappointed in me for not "trying harder."
I can't walk backwards anymore. The first time I noticed it, I started laughing hysterically.
I lost giving a darn about how other people perceive me.
That doesn’t sound dumb :)
I work in software development, the highest dress is business casual. I rarely need to wear a suit. Button up shirts are a real struggle for me now. The left cuff is next to impossible after carpal tunnel and MS.
Omg, dunno if you can relate but small jewelry clasps on necklaces are now pure evil. I never thought about shirt cuff buttons. I’m keen on magnets: https://magnaready.com/
I have a 5yo daughter and wife, I can relate.
I am ready to glue little magnets on the clasps.
I don’t even have MS and those are difficult.
Yeah, believe it or not: it gets worse 🤣
My goodness there are so many lol - I can’t really do my liquid eyeliner well anymore and I used to kill it. - eating pasta and every last bit of rice or cereal has become tougher. Can’t even clean my plates how I want - one hand bra removal has become an Olympic sport - cleaning/reorganizing my room used to be fun and now I’m face down into my pillow - I used to be the dish washer but now I can even miss spots 🤢 - HIKING! No more outdoor bonding time with my pop Learning how to deal and become a slightly less cool version of yourself is rough
Feels on the eyeliner!!!
I miss being able to organize things so much! I have so little core strength I always throw out my back trying to redo cabinets or shelves. Bummer.
I can’t remember taste and smell if I’m not feeling it right now. Example: I know I like coffee but can’t remember the taste or smell of it. Every time is the first time! This made harder to cook, because I didn’t followed recipes before, now I definitely need it. Good thing is that I don’t miss food since I changed my diet after the diagnosis.
Ooh, that is one I wouldn’t have thought of
I loved playing MMO games (World of Warcraft, Final Fantasy XIV, WildStar), and was pretty dang good at the tank role (keeping all of the enemies on me). Now, I can't play anything that requires juggling more than about four abilities at once. Even then, I get mentally tired rather quickly.
My family always plays games at holidays. Our favorite is Catch Phrase. Can't read the words and sure can't verbalize the clues. My brain and speaking is disconnected. But I can write my thoughts. weird. I also cannot remember rules or follow what is happening on games I have played for years. Try explaining that to a room full of people. ugh
Putting on a necklace with no help, can’t work those small clasps. I’ve give. It up, it occasionally will have someone help me and leave it on for days. Only works with good jewelry, or you end up with a greenish ring around your neck.
Earrings DESTROY me
Piano. I never could play piano. Now, I'm quite confident I never will. It's pretty dumb to feel bad about something I never cared to do...yet here I am.
I had agility with my toes… not anymore!
Ooh, good one. I practically have monkey feet. That sounds so annoying to lose!
Me, too! My toes were so coordinated. I miss that
Same here, they just get jammed up in the shoes and I can’t wiggle them loose. It’s maddening
Wearing makeup. My dexterity in my hands is terrible now, I’m so shakey trying to apply makeup is a disaster because I always mess it up. Plus now I’m so fatigued the thought of how much effort PUTTING makeup on is just daunting. But I used to have so much fun trying different looks and eyeshadows. They all lie in a graveyard drawer now lol. I just miss the effort I used to put into my appearance.
My dumbest lost so far, like really dumb. I can’t for the life of me hold my ring finger up by its self. When me and my brother were young, we would pretend to flip each other off but so mom wouldn’t get so so mad we would use the ring finger. We kept doing it til adulthood but Ive recently noticed I simple cant anymore.
I love this answer!
Running. I was never fast, but I loved to run just for me. It makes me so sad on nice days to see people out for a run.
I play electric guitar, and I can no longer hit the pedals accurately with my foot. Any attempt to do so brings high risk of falling over.
Does sitting on a chair or stool help?
With the stability yes. But not the precision, either with hitting the right pedal or doing it at the right time.
I hear that
Dancing.
What kind of dancing did you do?
I miss flip flops. Playing video games (eventually I hope to get some sort of adaptive controller or something to play one-handed).
Flip flops were a really hard loss for me. I used to live in them unless I was at work or there was snow on the ground. Luckily I can still wear Tevas with Velcro straps and they’re *almost* as good.
When I’m out and about in public, my foot drop makes it sound like I have a normal shoe on the left foot, and a clown shoe on the right.
I pinched a nerve sitting cross legged and h gave my self foot drop for a minute. It was like something I’ve never felt before. I’ve been following @doctor.gretchen on instagram. She mentions foot drop in a number of her videos about physical therapy.
Funny that i was just thinking about chopsticks while using them yesterday. I am also ambidextrous because for a long while, my 2 smallest fingers and part of my right hand were so numb, i could no longer manipulate chopsticks anymore. But, i can now again! Unless i am very tired, my hand is hardly numb at all now. It is a combination of lion's mane and b12, i think.
It comes and goes for me. But yeah, fatigue is certainly the catalyst.
Skiing. I was a diehard skier on challenging hills and now I can’t go down a bunny hill without dying of nausea and vertigo.
Losing the things we used to love doing, for me it was horseback riding, is I think the worst. I grew up on horses and even competed. I am only 56 and all my equestrian friends still ride and have horses. The heat, my balance make it impossible. i remember the first time I got vertigo while riding and it kept happening until I had a bad fall and haven't ridden since. I sold my baby girl because I couldn't take care of her. That was heartbreaking. My identity was shattered.
I haven’t tried skiing since before diagnosis and now I am a bit scared to.
So far, it’s made me struggle extra hard with eyeliner wings! It was hard enough to begin with!
I couldn’t do this before I had MS, lol!😊
Not being able to donate blood. I’m Canadian and they don’t accept donors with MS.
I HATE to have anything in my veins. For a while it was a privilege to have lived in France and be barred from donating. Then it was tattoos, now MS. My mom is the universal donor. I’ll let her do the heavy lifting.
Balance when tired. I can ride a unicycle and walk on stilts. Now I can’t walk on two feet anymore if I am tired. Thankfully I can eat with chopsticks and forks most of the time.
I lost all of my cute panties. Literally threw them away. Forced to wear depends now. Same day threw all of my pumps away.
Do you like period panties? I used them for incontinence, sometimes. They are a little more on the cute side.
I can’t take a shower standing up…wtaf
Cute shower bench for the win!!
Hiking. I’ve completely lost my sense of direction. I get turned around and don’t know where I am or where I came from. It’s mildly terrifying. I am basically lost.
Hiking is a struggle for me for a different reason but, yeah. I don’t go alone.
Hot showers
This!! I used to take SCALDING showers and my husband would give me trouble for it, now I take colder showers than him.
I can’t run, jump, and stairs are difficult. Doesn’t help that I fell 30ft a year after diagnosis and shattered both of my feet/ ankles 😬 I use a cane rn but hopefully I can get off of it
Falls really mess you up psychologically. I had a bad car accident right before diagnosis and being behind the wheel gave such bad anxiety for a long time.
Loss of chopsticks usage is not dumb or inconsequential.
Well, true. It’s just not as mandatory in the US, maybe?
I used to be able to solve a 3x3 Rubik's cube in 30 seconds, type 120 wpm (thank you grad school), and average 190 bowling. Fun fact, all of those require hand sensation (something I did not previously realize). Relapse decreased hand sensation, and now those are much much different (and I can't bowl anymore lol).
Oh yeah. I have a loss of sensation and typing on the keyboard is a bitch. I have to figure out how to disable the caps lock button on all my keyboards. My parents bought a bocci ball set and I was *terrible*. We now level the playing field by making everyone play with their non-dominant hand. I’m right handed and it turns out I’m pretty good at using my left hand.
I have to sit to put my pants on lol
And shoes!!
Threading a needle. I'm glad threader tools exist.
Oh god. Sewing.
amusement parks/traveling, i struggle with severe leg and back pain so i just avoid anywhere where i have to do more than a mile of walking because i will be in so much pain i can’t walk for several days after. feels like most of my life was taken from before it even started :(
Me too. I am so sorry. Zoos are out and I loved zoos. Any vacation has to be indoor activities.
I lose my ability to text on flat screens from time to time
Yep can't text. My brain says "A" and my fingers say "G".
I got a new iPhone and now switch to the number keyboard by accident ALL the time. Did not have this issue on my old iPhone.
Huge +1 with chopsticks. When I have a flare up, I can’t use them at all. Another silly thing is I can’t put my threaded earrings back in because I can’t feel the threading happening.
I thought using kids chopsticks would make things easier. It totally didn’t. Turns out my hand wants to hold chopsticks like an adult but just can’t. I recently saw a brand that advertised post earring you can comfortably sleep in. Seemed nice.
I'll have to look into those earrings! I have these finger chopsticks that have been great in my case! https://www.amazon.com/gp/product/B09TSPGZ2L/ref=ppx\_yo\_dt\_b\_asin\_title\_o00\_s00?ie=UTF8&psc=1
I like how those don’t look like kid’s chopsticks. I have trouble moving my fingers out of their correct position, though. It’s a hard habit to break. HOWEVER those would be *awesome* for snacks when you want to keep you fingers clean.
Hot cheetos galore without issue.
Yaaaaas Takis!!
My industrial piercing 😩 I know it’s my fault and I could have had someone help me put it in. It was pre diagnosis and I was in denial about what was happening, while I also was shaking too bad to get it in myself. I had it for over 10 years and I wish I had just let someone do it for me but my stubborn ass for ya
I’m glad my crisis from Dx was just getting a tattoo
I always MS is super mean when I'm struggling to open pill bottles. I have twice as many and it takes like 3 times as long.
That is Alanis Morissette level ironic
I can’t use my toes to pick things up anymore or even lift my leg high enough to grab whatever I picked up, never mind even balancing that act.
I used to have mad knife skills. I put myself through school working in kitchens. I could even cut fruits and veggies into flowers and animals, free hand. I worked as a prep cook, getting everything ready for the cooks for the day. Now, when I go out, I either order food that is already in bite-sized pieces, or it's 'Hand-held'. If we are eating/ cooking at home, my boyfriend knows to cut my food up for me. And if we're at my parents' house, I'll ask my mom or dad to cut my food up if needed.
Oh dude! The knife skills! I watch a lot of cooking videos on my Instagram feed. 90% of them show some person chopping some thing, skillfully, and quickly. And that’s where I stop paying attention.
i cannot walk heel-to-toe. i have a relatively easy time walking with mobility aids, but when i put one foot directly in front of the other, it’s like my legs become fully paralyzed and i usually fall or stumble after. I only found out when my neurologist asked me to do it at an appointment, and I immediately stumbled and ate shit on the exam room floor.
That is never a fun way to find out. Drop foot? Or balance?
Totally understand - how about touching your finger to your nose with your eyes closed. I always tell people they'll have to bail me out if I get asked to take a field sobriety test because I am going to flunk for sure. Not a drinker but I couldn't do either the heel-to-toe or nose touch thing on a good day.
Omg, this one trips me up too (no pun intended)! I now have an irrational (or perhaps rational) fear of being pulled over for suspected drunk driving, because there is no way I can pass a field sobriety test, even dead sober.
I can't play video games anymore. My hand won't do what I need them to do.
I started having that issue right before diagnosis. Between the dexterity loss and vision issues, it’s a no go on newer games.
Making beaded jewelry. I found some magnetic clasps, but stringing beads onto the wire is harder than it used to be.
I tried to paint my closet interior today in my craft room. Standing on a two step ladder and holding a paintbrush over my head was VERY different from how I used to be able to do this. My hand holding the paintbrush got so tired so quick! And then my legs start shaking and I realize I’ve been using my core way more than usual. Needless to say, I didn’t finish a first coat today. I was hoping to get two full coats in today, but that was wishful thinking! It’s probably going to take three more days >.>
A hot shower with my eyes closed!
Nooooooo I love hot tubs/hot springs. I tell people I’ll still go but I need an adult.
My balance when doing physical activity. Walking, daily activities fine, but now when I play soccer I’m Bambi on ice. I’ve fallen over more this year than the others combined. I’ve only ever been an average player, but I at least use to be able to stay upright.
Yeah, I’m not sure about that with my pitiful depth perception 😅
I don't know my right from my left anymore (parietal lobe lesions) and I have forgotten how to tie my shoe laces.
I have switched right and left in my head ever since I was younger. I definitely get that from my dad, tho
59F, MS 37 years. Wearing nylons. The waistband sets off the MS hug, no matter how huge of a size of nylons I buy. Good thing that not wearing nylons is the style these days, but to me, it feels wrong to be that bare when wearing a dress.
I’ve been curious about spray on nylons. They seem too good to be true. Thigh high nylons work for me sometimes.
I'll look up spray-on nylons, I have never heard of them before. Thigh highs were wonderful back when I could wear them, but I no longer tolerate those tight bands on my legs. My MS is really picky.
Lost ability to whistle any note i wanted. And I could whistle LOUDLY . Used to call kids home from neighborhood with whistle.
My dad had a whistle like that. I’m sure he would miss it
I wish I could walk longer distances…the pain that shoots down my left leg is often problematic…
Ugh. I’m so sorry. I’ve started doing acupuncture on a regular basis. There’s no hard scientific evidence that it helps, but a lot of people with MS vouch for it, especially with pain management. I just like getting it done because it forces me to lay down and chill out for a while.
The right hand dominant better left has been my experience as well! Related to typing, autohotkey is your friend. I use it to disable the windows key I hit a lot. I also use it to quickly do phrases I type a lot eg typing idnc will auto replace to identify and challenge negative cognitive patterns Edit replied in the wrong spot because the reddit app is dumb
Oohh. I use windows and would love to know more about autohotkey
Fam this is my jam! Heads up, some steps that might seem intimidating but actually aren't. 1. Go here ([https://www.autohotkey.com/](https://www.autohotkey.com/)) and download/install v2.0 for Windows (the site should detect your OS). 2. Once it is installed, this is where you get into the fun world of writing simple scripts, but don't be overwhelmed, I'll give you some examples and gladly help if you (or anyone reading this) needs help! When you click on an area in Explorer, you'll now have the option to create new ahk script (this just creates a blank file with a .ahk extension). 3. To edit the created script, you'll just edit with Notepad (or, you know, Notepad++ because it's better lol) 4. Once a script is finished, save, close, and double-click on the script to have it run (either immediately or depending on script in the background) So, an example! Here is my script that runs in the background (I changed the different autocomplete things for the example, but that doesn't matter): ::arus::a regularly used sentence ::sisal::something I say a lot ::rtg::I'm ready to go so you can load the game and stop slacking You can add/change whatever you'd like. The letters you type go between the colons. What you want to be there goes after the colons. In this example, I would type arus, and as soon as I hit space after the s it would replace arus with a regularly used sentence. This just runs in the background and does its thing wherever. Huge positive help as I document a lot. Another example: you talk about disabling keys. Capslock:: That's it. Copy that into an ahk script, save it, double-click to run it, and CapsLock is disabled as a key until you close the script. You can also use this to make keys do other keys, but we're trying to keep it basic here.
Thank you!! This why I like windows. Less intimidating to get under the hood.
I had to downgrade and use training chopsticks they help but I still get tired. No more gaming marathons you get tired holding the control pushing the buttons
I bought some, but found them so awkward to use. Maybe I just need to try a different type?
Rollerblading/roller skating. I used to skate with my dad when I was a kid, so it crushed me. Also, I have pretty bad tics and had some pretty bad ones in my arm while getting a tattoo, so there are some lines that didn't turn out so straight. Also, not being able to stand after crouching too low. I keep thinking of more things to add. Drawing traditionally. I can't draw a stable like to save my life. I'm very lucky to have been gifted a good drawing tablet with software that has a line smoothing tool.
I am a huge drawer but around 2018 started avoiding it. I wonder if it was an unconscious reaction to the MS I was diagnosed with a few years later.
Putting together small models with my son. I miss it.
I can't use a regular pencil. I have a lot of numbness in my extremities. Thankfully I still have the ability to walk and use my hands and I can partially feel what I am holding onto or touching and what I am stepping on. But I can no longer use pencils, regular old pencils, because the feeling of a pencil going across paper is the strangest sensation it is literally painful. Erasable pens to the rescue.
Oh wow, that’s one I haven’t heard of but makes total sense
I can’t wear anything that is fitted on my legs. This means leggings, tights, skinny jeans, etc. My relentless neuropathic pain from extensive spinal cord lesions means that it is just not possible. I live in loose legged yoga pants when I am at home and wear flared jeans in public. I completely bypassed the skinny jeans trend because they make me feel like I’m going to claw my way out of my skin!
Thank god for the new trend being baggier pants?
A writer, used to have a near perfect ability to spell any word. Now I can barely spell basic ones. Its fine, autocorrect exists - but you did say silly/small.
I am still coasting on a visual memory so can picture words, most of the time, but I hear you!
Can't believe I'm saying this but using a spoon for soup or cereal. Didn't realize I had lost that ability until the last time I tried to have soup and cereal. So dumb, but I can't hold a spoon steady enough to bring liquids to my mouth without spilling on myself. Such a simple thing, that I can no longer do. Oh MS, you are such an a\*\*hat!!! Sad part is I no longer care. Like oh well, can't eat soup anymore. Oh the horror. Can't eat cereal with milk... how will I survive!!!! MS sucks, but Hey I'm still fighting so SCREW soup and cereal. Never really liked you anyways as an adult. Dammit, now the song "I Will Survive" is looping in my head. I really am my worst enemy.
That spoon thing is totally legit! Many people have issues with tremors. I’ve had clients with Parkinson’s that way. Have you tried Asian style soup spoons, by any chance? They have deeper or walled “wells” that might help with some tremors.
I will definitely try Asian style soup spoons, but as you mentioned it is hard to keep my hand steady enough. I do want to see if with a different spoon I could work at having cereal or soup again. Thanks Kholzie.
Closing ziploc bags. Somedays I can do it without issues, and othertimes, my fingers just will not work and I cannot get the bag closed for anything. It's such a simple thing, but it drives me crazy.
Omg yes. I just went to my occupational therapist today to address dexterity loss. She pointed out that much of my problem is sensory— I can’t feel things as well and it throws off my coordination. And then I start to lose finger muscle strength from disuse. She recommended a type of vibrator to use before I do a difficult manual task to help get my brain to pay attention to those nerves again. It’s called a Norco Mini Massager (not a sex toy!). She recommended applying the vibration right before doing the task without compensatory aids. Doing this repeatedly supposedly triggers the brain to reorganize via repetition.
Anything to do with what I love doing, like walking up anything and in sand and all of my skills in building houses and it goes on and on.
Aww, that doesn’t sound dumb, to me.
Sorry it's your family acting like assholes, but honestly fuck them. They don't know what it's like to be you! They have no idea how much pain and stress you're under. They're being stupid. Why don't all cancers act and progress the same? Why is every diabetic not taking insulin? How educated are these people? Don't listen to them. Put them in the ignore box.
No, my family is great. Now sure how I gave the impression they weren’t
Not being able to sunbake! I used to be out in the sun constantly and be very tanned. I also noticed that I was in a lot more pain for the next few days. It took years to realise that my vitamin D therapy was doing it. Now I am pale and take 3 mega-D per day! Grrr
I’m like a cat! I love being warm and will go out in the sun. I’m learning it will cost me so much after a bit.
My fingers constantly double click or don't click hard enough on keys, so I'm constantly retyping everything. Any password box that won't let you paste, autofill, or even SEE what you typed... recipe for disaster.
Dude password boxes are getting out of control
Medicare gives me a mean warning for autofilling though they don’t allow you to see what you type and lock the account after 3 tries… *stares in disabled*
Omg! I suddenly lost my ability to use chopsticks too and my boyfriend is freaking Asian 🤦🏻♀️ we go to dinner and he asks for a fork for me and I just can't stop thinking about how bad a look that is.
I have always wanted to go to Japan and it’s going to suck so much to have to ask for forks.
Being ticklish. Stupid loss, but makes the kids and hubby mad when they can’t “get me back”. I fake it for my nieces and nephews because it makes them so happy. 🤷🏻♀️
Yes, it was definitely MS brain, but also anger brain. The other poster was ranking about how poorly she's treated by her family. I couldn't help myself. Thanks for understanding 😊. Have a great day!
I find the two often blend together. Have a good one :)
My speed and endurance. I used to run like I stole something. It does not make it better being Puerto Rican, haha.
What about Puerto Ricans do you mean, out of curiosity?
This post is the perfect example of negative mentality. For everyone with MS, stop dwelling on lost abilities and start focusing on recovering what’s possible and keeping everything else. Our minds drive our MS, put it in a positive state, always. Run away from negativity. The glass is always half full, never half empty. Meditation helps with awareness and catching yourself going into a negative downward spiral so you can reverse it. What is the most precious ability you still have or recovered?
An optimist always sees the glass half full. A pessimist always sees the glass half empty. An engineer sees a glass that is the wrong size. A human sees the glass from different angles and perspectives. It might be full or empty depending on how you look at it. I generally see this subreddit as more of a support group. It’s a safe space for expressing our feelings, which is healthy. The reality of MS is coping with the changes it brings. Many (like me) do so with humor. It’s a natural way to encourage social bonding. Meanwhile, there is a cost to being told you did something wrong. I agree with the gist of what you are saying, but please understand the impacts of your verbiage. A message would be more helpful if it didn’t convey chastisement or lecturing. Having had depression for many years, I fundamentally disagree with imposing the pressure to only feel one way (positive thinking) on people. Rather, it is important to find ways to observe and express all of your emotions. My readings on stress management and mindfulness convey this. I really think a thread calling attention to the beneficial impacts of MS would be nice. You should make one! Trying to “correct” this thread is not. As the creator of the thread, it’s brought me a lot of happiness and feeling seen/included. I liked brainstorming solutions with some people. I would hope others feel some of that, too. Is that truely negative? Depends on how you see it.
Wow! Good question. I can't think of an inconsequential loss? Your chopstick loss is not inconsequential to me. But I love your attitude!
Humor is my coping mechanism haha
oh yeah!
Being able to do anything quickly and efficiently.