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MS And The Unexpected Perils Of Showering

MS And The Unexpected Perils Of Showering

Multiple Sclerosis has a knack for being extremely disruptive in the daily lives of those it afflicts. What may seem like a mundane and daily chore for most can become an enormous challenge for someone struggling with MS. One of the best examples of this I can think of is taking a shower. While it seems like such an easy task for most people, the standing, temperature changes, and even just remembering what to do can all be a struggle.

Leg numbness and weakness

Many MS patients struggle with weakness, numbness, and even just controlling their legs. Standing anywhere can be very difficult and falls are all too common. Just walking down the hall to get to the bathroom can be an adventure if I’m having a bad day. When showering, water gets added to the mix! That certainly doesn’t decrease my chances of falling. Standing for an extended period can really bring about some fatigue and pain. When I can stand for a while, it may not be noticeable, but I do tend to sway back and forth a bit and catch myself a lot. That’s not always a problem, but on the slick surface of a shower floor it can become an issue. Leg spasms, another common MS issue, can also make standing in the shower dangerous. Adding to all of that, getting into many bathtubs feels like trying to climb over a giant wall!

MS heat intolerance

Heat intolerance is another massive issue we face when taking a shower. Most people suffering with MS experience a worsening of symptoms when their temperature increases. In fact, there was a time not long ago when MS was diagnosed with a “hot bath” test. If a person was suspected of having MS, they were immersed in a hot bath to see if symptoms appeared or worsened because of it. That’s a pretty good example of how temperature can be a big issue here. Now, you might say, why not take a cold shower? Sounds easy enough, but in addition to not being very pleasant, cold temps can cause issues too. For myself and others, it’s not just heat, but fluctuations in temperature that are the real problem. In the MS world, heat gets the headlines, but trust me, it’s only one of the culprits. In my case, I have a lot of issues when the temperature swings just a few degrees. So even taking a lukewarm shower can still cause me issues because no matter what I do, my temperature is likely to fluctuate.

Issues compounded by cognitive problems

Standing and difficulty controlling the temperature are compounded by the cognitive issues that many of us experience. It’s very easy for us to lose track of time and what we were doing. I know there have been times I’ve washed myself and then started over because I didn’t realize I’d done it already. It’s not until my wife comes in to check on me that I realize what I’ve done. By that point I’ve been standing, likely in water that is increasing my body temp, for a while; this can lead to disaster. Even if I haven’t fallen, the extreme fatigue and pain that result can be overwhelming. Once out of the shower, I’m lucky to make it back to bed or to the couch for a much-needed rest.

A bad shower can lead to canceled plans

A bad shower experience, something that happens all too often for me, can really ruin a day. I’ve taken a shower while getting ready to go out and meet friends, had this happen, and then been unable to go out because of it. Folks with MS tend to cancel plans often, this is just one example of why that happens. It’s hard to explain that you are canceling because you took a shower and it didn’t go well. “Sorry, I showered and now I’m having trouble moving and I’m in pain, so I can’t hang out tonight.” It sounds crazy even to me when I say it out loud, so how must it sound to those that don’t have these experiences? So as odd as it may sound, just taking a shower with MS can profoundly affect your relationships with friends and family.

Finding showering solutions

There are certainly ways to battle some of the issues presented by showering. Handicap grips, a shower seat, and a shower that doesn’t have a high wall are all very helpful. Controlling temperature can be a bit more difficult. For the most part, trying to get through the shower as quickly as you can is the best bet (but be careful rushing around on that slick wet surface!). I also confess, I don’t necessarily shower every single day. As with anything MS-related, careful planning can also help. Getting the shower over with long before I have to be useful is usually my best solution.

No matter how you try to deal with the problems faced by showering, you may still find it difficult on some days. Temperature, leg issues, and cognitive problems can lead to canceled plans or even a dangerous fall. Showering may not seem like a big deal to most people, but for some people suffering from Multiple Sclerosis, it can be a big and even dangerous undertaking.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Cynthialou57
    2 days ago

    WOW!! Thank you so much Devin Garlit!! for your shower store!! God how I felt so good to know I’m not alone!! Showers are a all day issues for me. And I’m done for the day after a shower!! And it’s even worse when you have more then just MS wrong with you!! I have to fight everyday just to stay awake. And then the fatigue of just moving can do you in!! And then when one has Neuropathy in there feet!! Yeah1 Shower’s are so much fun!! ( NOT!!) But nice to know I’m not a loan. Thanks you made me fell much better.

  • Devin Garlit moderator author
    1 day ago

    Thank you @Cynthialou57! You are most certainly not alone when it comes to showers! They can be pretty rough for a lot of people!

  • sip1beer
    1 year ago

    At home, I have my routine down perfectly. I have a plastic chair in my tub. My problem is traveling. I always request a handicapped accessible room, but even then it can be a challenge.

  • Devin Garlit moderator author
    1 year ago

    Thanks for sharing sip1beer! I understand, I get very out of sorts any time my routine changes, particularly with something like a shower. It’s one of those small things to most, but can have a huge impact on us.

  • pbradam
    1 year ago

    Wow, it’s nice to know I’m not the only one who has this problem. I have a hard time getting in the shower, taking the shower, getting out of the shower, leaving the bathroom immediately to escape the heat and humidity, and then enduring what I’ve come to call the ASB (after shower blues) where I can’t walk, balance or think. I stumble around trying to at least dress enough to leave the bedroom and then stumble with my walker to the living room where I have to sit, comb through my hair and recover. There’s an hour or so.

  • Devin Garlit moderator author
    1 year ago

    Thanks pbradam! You are definitely not alone when it comes to showering problems, so many of us deal with an assortment of issues related to showering. It’s most certainly my least favorite activity!

  • Sue
    2 years ago

    I have a snap and swivel chair in my shower. I need the aide to get me onto the chair and get me under the shower head. Thank God I can wash myself and my hair. I need to keep the water warm, but never hot.
    Then the aide slides slides me back and assists my transfer to the commode. By the time I’m dressed,I am so exhausted..I used to shower twice a day, now it’s every other day. I hate that I can’t possibly shower without help, but I’m so lucky to have help.
    I just used to feel good after a shower. I used to dress and look good. My back is collapsing and I sit crumpled over.
    People say I look good, but I know they’re lying. I used to enjoy looking in the mirror. MS sucks in every way!

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for sharing Sue. You probably do look better than you think, I think we all tend to be a little hard on ourselves when it comes to that. I understand how you feel though.

  • mikeo
    2 years ago

    Hello,

    I’m new here and found this on a google search. I was diagnosed a little over a year ago with MS. At least I know I’m not alone struggling so much with a shower. I don’t know where I’m headed with MS, I can’t walk long distances anymore, I can’t stand for any longer than an hour before my legs suddenly feel like they haven’t moved in years and it’s hard to keep my balance to even get to a chair, like I’d just run a marathon, but all I’ve done is stand. I don’t know what the future will be, where I will be, physically and mentally because it does make me very depressed. It’s awesome to see there are people who understand. Thank you

  • SweetSunshine
    2 years ago

    Good Morning Everyone
    I agree that the Routine of a Shower, can in fact be the thing that changes your Emotion for the Entire day. It’s so very frustrating to know that I’ve laid out the outfit I’m wearing for where ever Im planning on going. Picked out Accessories and grabbed my Soft Cozy Robe. (Because I also have Fibromyalgia and add that to my MS and Texture is also a Big Problem) I have turned on the shower checked the Temperature and now stepped up and into my -Tub/Shower Combo, and Yes So Frustrating That as the water is hitting my skin it feels like Jackhammers all over me with little needles, the pain the tempatire “Ahhhhhhhhh” God help me! The tears just start, I fight my way through it, but with Women your Shampooing followed by Conditioner and shaving, that’s 10 minutes right there, and Than lather Up My Back strap to wash my back for me, followed by the rest of my body, and Than rinse out the hair conditioner and soap from my body. Now we’re at about 20-25 minutes. And once I’m done you whip that shower curtain back grab my robe and just wrap up as fast as I can. But I keep a tall glass of Ice Water on my Vanity so that I can Cool my body temp a little quicker. And I will sit down on a chair and lotion my body to help keep skin hydrated is so very important. And once this is done and Ive moved to my dressing room, I’m in tears because now I’m sitting on the loveseat looking at the clothes I chose to wear knowing full well that not only am I not putting them on, I’m going to go and lay down because I’m exhausted and I can’t even focus on anything but wanting to lay down and have a quick cry. I’ve been in the rut where the Shower was more dreaded than an EEG. So i would put it off and put it off and on Day 3 I’m Angry with myself because I wanted to go somewhere and “Now” I need a shower before I can go anywhere.and I know how this Routine works. So other than keeping ice water close by I also use Nivea Body Butter. It’s not greasy and it absorbs nicely and that eliminates extra contact with my skin, and that’s a great thing.
    So now I’ve figured out that once it gets close to 8:00 or 9:00pm Depending on what may be coming on TV that night, I just grab my water my Robe and turn that shower on check the water and I just get it done. Get out lotion up brush my teeth put my hair up. Put on some soft lounging leggings a soft shirt and jump into bed. By the time I fall asleep it’s about 2-3;00am and usually my body starts screaming about 5-6:00am annnnnnd I’m up, grab a pain pill and a cup of coffee and I just keep on going until I Literally Drop. By taking my shower at night that puts me so many steps ahead in my day. And I’m not fond of going out anywhere before I shower that’s just one of my pet peeves. But I’m learning to adjust to the much needed change in my MS Lifestyle. By showering at night, that just leaves a couple things to do in order to get out of the house, Brush my hair and teeth get dressed make my bed, look over my much needed list in my phone “Reminder Notes” of what I need to do while I’m out that day, and I’m finally out the door. Granted by the time I’m out and getting things done my body starts acting like a 4 year old child having a temper tantrum and reminding me that it’s pretty Pis**d off at me. And tries to suggest that I just give in and go home. But Im not giving in to the nasty actions of these diseases. I have things to do, and by following through with my plan it keeps my Mind Right!! And I’m sure All of you Understand that. Once I’ve completed my todo list I’m pleased with my progress and my head is in a good place( and trust me that’s so very important) on my way home I think about what’s next. Carrying in groceries or what ever else I needed to pick up, up and down the stairs. And how much more will this body allow me to do. Do I make the call to my Very Loving Understanding Husband to let him know that I’m on my way home and I’ll really appreciate his help- or will I act like a rebellious 4 year old and try to do it All.(usually it’s the later of the two.) However my husband usually hears me pull up into the driveway and he comes out and boldly Suggest that I go inside go upstairs to my room and rest. And I’m pretty sure he’s right so I do exactly that. And the whole time I’m stressing over where he’s putting the groceries, did he close the gate, did he lock my car, did he figure out what I plan to make for dinner, is he cooking, is the kitchen a mess because he can get messy in the kitchen( god knows i love him but he can mess up a kitchen in less than 10 minutes) lol letting go of some control is very difficult for US I know because when we didn’t have so many limitations we thought we could “DO IT ALL” and now We Just Can’t !! And that’s a Battle Everyday.
    One most of US struggle with and promise ourselves that we will work on and I believe I am trying I’m just not very good at that yet. And no matter what we’re going through

    “Our Support System is One of The Most Important Things” we are Thankful for.
    Our Lives will never go back to the way they were, so knowing that we have options, We can lay down and appreciate Defeat.
    Or We can give this MS a run for its money. After many years in the world of Medicine I took care of countless patients and Literally Loved my Career, and to be told that those days are over and my body won’t allow me to continue, is in itself a kick in the gut and you’ll go through so many emotional roller coaster rides and find yourself screaming to get off of that ride, all while knowing that even once the ride stops your Emotions Won’t. So I do my best to keep busy with keeping up on my Home and Volunteering with NonProfit Organizations( there are always things you can do to help and some right in your own home, making phone calls gathering information,) I love Crafting Floral Arrangements Wreaths Cooking for Our Veterans and so on.
    My Drug Of Choice-All call me Nana.
    And They also keep my Head Right. And that is nothing short of a Blessing.
    I figure as long as I push myself to keep as much Muscle Tone as I can, and keep my weight under control, following my PCP & Neurologist Direction.(and trust me I still Research Their Care Plans and Medications that they prescribe for me. I weigh the pros & Cons) I Give the Medications time to show me what they can provide for me, and chart side effects. And if the bad outweighs the good, than I call have an open honest conversation about it and go from there, because No Two patients are alike and Medications react differently on each of us. I myself Refuse to take any Medication that contains Steroids because while some Medical Professionals feel that they are a benefit, I do not. With The Weight gain and Emotional Mood Swings, I couldn’t even stand myself. I gained 26 lbs in 5 months my breathing was labored and I didn’t want to do anything because none of my Cloths fit properly and All I wanted to do was Fight. ( my poor Hubby) once we had the discussion with my Care Providers they agreed that this was a bad fit for me. I slowly weened myself off of the Steroids and lost 37 lbs became much more active and I was a much Happier person All the way around. Some Individuals do Great on Steroids I’m just not one of them. Be in charge of your Medical Care -Be Present-Be Thankful that you Can!! Because Yes Cog Fog is very real and that’s another Hurdle we need to be prepared for. And Another way to offset Our Emotional Stability. I Fall I Cry I Get Angry I Question “WHY” Often. I Hide in Our Bedroom sometimes for a couple Days. I Cancel Plans- I Push Myself – I try to remember what it felt like when I didn’t have NonStop Constant Pain all over my Body. &&&
    I Count My Blessings Every Single Day. For what I can do, For Who I have in my Life.
    And When I Question “Why Me”
    That’s when I answer myself by looking at my Family and say to myself-“Why Not Me” If I looked around at My Family My Friends Or Even Strangers and Ponder who I could let take these Diseases instead of Me! And my Answer is Always. I WOULDN’T WANT ANYONE TO LIVE THIS WAY. And just maybe if someone around me was going to have to have These Diseases than IM GLAD ITS ME
    Stay Positive Stay Happy Stay Greatful. Stay Strong. And Fight Like A Gold belt Winner to Stay “YOU” Because Disease and Pain will try to change you! Don’t Let It.

  • Devin Garlit moderator author
    2 years ago

    Thank you SweetSunshine! Appreciate you taking the time to share your experience!

  • Nanny to 4
    2 years ago

    I may start thinking about a shower at least 5 hours before since it is such a stressing time. A life saver for me is the shower bench I use to get in, just slide over. If you don’t have one, get one. I also have a shower bar to hold on when I get out. Just a few hints to make life easier!

  • Devin Garlit moderator author
    2 years ago

    Thank you Nanny to 4! Appreciate you taking the time to comment! A shower bench must be extremely helpful!

  • PetieJ
    2 years ago

    Thank You God! Thank You Devin. I had a slightly hysterical feeling of surprise and relief after I read this article and saw how many responses there were! I’m Not Alone! I’m Not
    Gross cuz I don’t/can’t take a shower every day. What the heck have I done to get dirty? Very little. I Dread It when I know the day has come-But I Must! I feel as if I’m in a boot camp aerobics class. I end up utterly out of breath. If I don’t stay in order of what gets done first, well, yall know!! The temp has to be warm enough to rinse the soap, shampoo, etc, but when I’ve finished I remain standing in the water turning it to a cooler temp little by little. I get it cool to a point that I think it’s all I can tolerate and stand as long as I can. I’m doing this thinking I’m cooling my body off because in the past several months, when I dry off, step out & finish drying, I begin to get warm. Then warmer, to hot, to Hotter; all I have on is deo & bath powder but continue to get hotter to the point that I feel like I need to get back in the shower!! It’s AWFUL. Heat is my kryptonite-but I don’t understand what I’ve done or am doing that’s causing this to happen–I always feel I must be doing something wrong to be causing this. I’ve learned to just wrap up in a towel and sit in front of or under a fan, but many times that’s not enough either. It can take up to an hour to cool down enough to feel “normal”, to get dressed. I can’t take a shower the same day I have somewhere else to be! I’ve fallen several times (unknown to hubby) just turning around to face opposite direction but even with eyes open I’ll get dizzy and feel like a cartoon looks, limbs flying, trying to maintain balance. Rarely will I dare to if he’s not here. All for a lousy shower! Incredible stories-similar but different. We just must be special!

  • Devin Garlit moderator author
    2 years ago

    Thank you PetieJ! As you can see from all the comments, showering can be a huge issue for so many of us! Definitely not something most people who don’t suffer from MS think about!

  • l4u95h
    2 years ago

    I’m alright in my shower at home but we have been traveling the past few days so finding the “safe” to shower in the hotel bathrooms can be complicated. I like taking cool showers. It’s hard to do that in hotels. It’s either hot or cold. Finding the perfect temp is hard.

  • Devin Garlit moderator author
    2 years ago

    Thank you l4u95h! That’s a fabulous point. While I can have trouble in my own shower, having to use one that I’m not familiar with can be especially difficult! I’m sure it’s that way for many of us!

  • Toledo34287
    2 years ago

    Regarding a bath…….someone told me to drain the water and just relax, read a book, until the power comes back to your arms and legs. A glass of wine helps the time go by…….

  • Devin Garlit moderator author
    2 years ago

    Thanks Toledo34287, thanks for the tips! I’m sure a glass of wine would certainly help me ease out!

  • SweetSunshine
    2 years ago

    Truly The Glass Of Wine has Actually calmed me down and helped me to go to sleep, and I’m sure I’m not the only one who has that problem & surely as soon as I’m actually asleep The MS or Fibromyalgia start up and I’m up for The duration of the night and most of the following day. But when I decide to have a glass of Wine before bed, that happens Less.

  • oliver24
    2 years ago

    After being in a hot tub my husband was unable to walk, that was one of his first symptoms of MS about 10 years ago. We have remodeled our bathroom with a completely barrier free shower, he can walk right in, it doesn’t have any type of curb on it to trip over. It also has a flip down seat attached to the wall and soap dispensers appached to the wall so all he was to do is push on the buttons and not pour it out. Grab bars everywhere!!! They actually come in some nice styles so they don’t look like big older grab bars. It’s wonderful, and no more tripping .

  • Devin Garlit moderator author
    2 years ago

    Thank you oliver24! I think many people have similar first experiences like your husband did. Happy to hear you were able to make the modifications to your bathroom, those types of changes can make a huge difference! And as you pointed out, these days they can still be stylish!

  • dedeye
    2 years ago

    Yeah, me too!

  • KimS
    2 years ago

    So glad you wrote this article. I’m so glad to know I’m not the only one to dread showering!

  • PetieJ
    2 years ago

    KimS, I thought I was the only human who literally Dreaded showering! U r not alone!!!!

  • Devin Garlit moderator author
    2 years ago

    Thank you KimS! You most certainly aren’t alone!

  • jennyb
    2 years ago

    I use a shower chair in my walk in shower. But there is a thing to step over, so I like the idea of a walker with no wheels for when things get so bad that I would need it. I don’t like my husband to help me with that problem. There was a time when I broke my ankle and could finally have a shower but couldn’t get from the wheelchair to the shower chair. that was before I had MS), so I became a fat slippery thing and had to ask for his help.

  • Peeto
    3 years ago

    For me, one of the scary things is standing there, closing my eyes to wash my face. It suddenly feels like I’m balancing on my tippy toes on a ten foot unicycle…

  • Devin Garlit moderator author
    3 years ago

    Thank you Peeto! I think that can be a common issue for many of us. If I’m closing my eyes, I have to hold onto something, or else I won’t be on my feet for very long!

  • scooterg
    3 years ago

    Great article! After the shower you have to dry off! I told some friends a while back try drying off with one hand while grabbing everything in reach with the other to keep from falling!

  • Devin Garlit moderator author
    3 years ago

    Thank you scooterg! So true! Drying is not an easy endeavor, and with water added to the mix, it can be downright dangerous!

  • Dianne Scott moderator
    3 years ago

    Two words: On. Point.!
    And pretty much some – all of what the other comments said. Excellent, well written & accurate article!

  • Devin Garlit moderator author
    3 years ago

    Thank you DianneScott♡!!!

  • Rob
    3 years ago

    WOW! talking about hitting the nail on the head! As I sit here 36 hours dirty, scared to shower. I have those exact experiences. Your writing I have forwarded to my extended family many times to make them (to be as kind as possible) shut up. You are an example. I have had MS for 14 or so years. only two diagnosed. But all the symptoms and surgeries all make sense. I can’t write like you. But thanks for bringing a voice to people that have none.

  • Devin Garlit moderator author
    3 years ago

    Thank you Rob! I happy to hear that, I always strive to be an example that others can share to help their friends and family understand. The clock has been ticking on my “unfreshness” for a bit of time too! I like to tell my wife that it just makes me smell more rugged and manly 🙂

  • jtmarcy
    3 years ago

    I am fortunate enough to not have any cognitive issues, so forgetting steps is not a problem for me, but the rest… We found a house with a walk-in shower with a built-in seat. It’s more of a ledge, but I can sit there. I bought a cheap walker to help me get in and out of the shower. It stays in the shower with me. Most of them are made of aluminum, so rust is not a problem. I got one with four rubber feet, no wheels or skid plates, so the stability it offers on the wet tile is wonderful. It also helps when I’m towelling off… one more thing to grab when balance gets off.

    I know most people don’t have a walk-in, but it’s just something to think about. The walker is the best thing to help me get my feet over the threshold into the shower. Grabbing the shower door is not a good idea, and most grab bars are really only useful when you are actually IN the shower or tub.

    Thanks for the great article!

  • Devin Garlit moderator author
    3 years ago

    Thanks jtmarcy! I have a similar shower, a walk in with a small seat, that’s really like a ledge more than a seat. I hate to admit it but that seat comes in handy a lot. I can’t even imagine if I had to lift my legs over a bath tub wall! Thanks for reading and sharing your experience, very appreciated!

  • Kera
    3 years ago

    I agree with you 100%. I used to love showering but now at 35 showering is my arcgneimisis. I become so fatigued that if I take one in the morning it will ruin my whole day. I have on numerous occasions gotten done with the shower, got dressed, started to my hair only to realize I forgot to rinse my hair. 2yrs ago I had to finally give in and get a shower chair that allows me to sit and slide out of the tub. It was becoming to dangerous for me to stand because when I would look up or lift my arms I would loose my balance. Plus my legs are weak all the time. Thankfully I don’t have to use it as often but then again I push showering off longer than before

  • Devin Garlit moderator author
    3 years ago

    Thank you Kera, so sorry I just saw this comment now! You experience sounds and awful lot like mine!

  • Nobu
    3 years ago

    My portable shower/tub seat has come in handy for a housemate who recently broken her shoulder. It has made it so much easier for her to shower And I always wear some good water thongs – mine are from Birkenstock, but I don’t think they make them anymore but there are other places to buy supportive water shoes.

  • DonnaFA moderator
    3 years ago

    Hi Nobu! Thanks for sharing your experience! I did some checking and Birkenstock does still make shower sandals. There are a number of different brands, pricepoints and styles available, just Google “shower sandals”. Thanks for being part of the community! -All Best, Donna (MultipleSclerosis.net team)

  • saddison
    3 years ago

    I love this article and all the comments validating this issue. I have grab bars and a shower chair, and recently my husband insists that I wear “grippy” socks to minimize falls. Those are all helpful, but nothing helps the vertigo when you close your eyes, temperature issues and the fatigue that leads to nausea meaning it’s bedtime for me regardless of plans. Showering the night before I have to leave my house the next day, is the only way I can make it. My motor planning is shot too. If I get out of order in the routine way I have always showered, shaved my legs, and washed my hair, my mind cannot compensate. This causes me to leave out part of the process such as failing to rinse my hair. My biggest complaint is the resulting exhaustion. Still, I am able to bathe independently, so I hate to complain. Grateful that this is one task my super supportive husband doesn’t have to add to his agenda.

  • Devin Garlit moderator author
    3 years ago

    Thank you saddison! When I first wrote this, I wondered if it would sound too crazy to many people, that I was just having issues worse than anyone else. Since it’s been published though, many, many people have expressed all their many issues with showering. So we are most certainly not alone! Exhaustion is my biggest complaint too. I can take a shower that day or do something, both can rarely happen on the same day! Thanks so much for sharing your story too!

  • Ksterling
    3 years ago

    Oh, thank you for this topic! Agreed, showering is a task that is beyond exhausting, sometimes negating plans for the rest of the day. I am curious if anyone has issue with pins/needles leading to extreme itching during and after showering (no matter what shower, what location, or what water temp)? This has become a major factor in the past year or so. Drs. say probable nerve response, nothing seems to help. I’d sure be interested in hearing if any of you have had this problem, and how you deal with it? The vertigo and weakness are bad enough, combined with the itching, I get pretty worked up. After that, I’m wiped out. Thanks to all of you for your stories here…You are all so strong!

  • Devin Garlit moderator author
    3 years ago

    Thank you so much for reading and also commenting! I don’t personally have an issue with itching, at least not to that extent anyway, but I know that it is an issue with others. One of my fellow writers on here has some experience with it and she wrote an article about it here: https://multiplesclerosis.net/living-with-ms/crazy-itch-just-cant-satisfy/

    I hope that you can find some relief from that, I’m sure it’s awful. And as you say, there are enough other issues to deal with!

    – Devin

  • tahennen
    3 years ago

    I’d like to add another reason why showering is so difficult and I put it off. The water coming out of the shower head feels like thousands of needles when they hit my skin. Taking a shower means pain and exhaustion. I “french bathe” in between my showers, but still feel like a dirt bag. Does anyone else get this sensation when showering?

  • SweetSunshine
    2 years ago

    Yes indeed, I briefly mentioned this in my above comments. My PCP and Neurologist confirmed that Fibromyalgia is the main reason, and also added that many patients with MS also experience the same JackHammer Needle Effect. It’s very painful and Frustrating.

  • Rob
    3 years ago

    You sound like me. I feel so dirty. Yet have no desire to shower because of that too, not to mention all the symptoms in the above article. Thank you for sharing!

  • Devin Garlit moderator author
    3 years ago

    I have at times had this happen, thankfully it doesn’t happen to me all the time (sometimes it also happens if someone touches me). I have heard from others that encounter this sensation too so you are definitely not alone!

  • baltimore
    3 years ago

    Has anyone tried no-rinse foaming cleansers? I discovered these when I was in the hospital and nearly bed-ridden. I have used them occasionally and found them effective and even comforting. They’re room temperature, and you can buy them with a moisturizing component so they’re not at all drying.

    No-rinse shampoo is also available.

  • Devin Garlit moderator author
    3 years ago

    I’ve never tried them but that’s a great idea! Thanks for mentioning it! I am going to definitely investigate that for my rough days!

  • Masala
    3 years ago

    The problem I’m dealing with now is vertigo. Of course I have to close my eyes at times to not get shampoo in them and then the world starts to spin. Just lovely. And yes, the temperature. I remember one day I took a nice, long, hot shower. It felt really good until I got out. I spent the rest of the day in bed. Shower fail.Lol

  • Devin Garlit moderator author
    3 years ago

    Tammy, those are great ideas, thanks so much for sharing!

  • Tammy
    3 years ago

    My PT suggested using underwater goggles while taking a shower or a bath. Your eyes can stay open the whole time, no matter what. A handheld shower head works well, too. After the warm shower, use the shower wand to cool down just parts of the body before getting out. You have more control with a shower wand. Having a shower or bath chair is always the safest, even if it is just there in case you need it.

  • Devin Garlit moderator author
    3 years ago

    Vertigo can be a very tough symptom. Especially when you add water and soap to the mix! Hand rails and even a shower seat can be super beneficial for that.

    Ugh, I too have enjoyed a warm shower for too long on occasion, only to be put back in bed by it!

  • Cynde
    3 years ago

    I haven’t seen anyone mention this issue. I have over reactive reflexes in my feet, triggered by cold. I have to wear socks to step into the shower because the cold tile (and even the shower spray from above) causes my feet to jerk up. I can’t control it. I can’t even walk barefoot on any cold floor.

  • Devin Garlit moderator author
    3 years ago

    That’s very interesting, that you for sharing. I’m sure you are not alone. You might want to consider submitting a small story about that in our stories section because I’m sure other would love here about that and realize they aren’t the only ones. We all have such bizarre symptoms sometimes that are rarely mentioned on medical websites or even by doctors but when we all talk, we start to realize that it’s actually many of us that endure them.

  • Velana
    3 years ago

    I have a personal carer to help me take a shower and a shower chair to use. She helps a lot but goodness the temperature is an issue as well. There are days when I want to skip taking a shower because of all the associated issues that go with it. I used to be able to stand in the shower. Not possible now and getting dressed again causes its own set of problems. “sigh”

  • Devin Garlit moderator author
    3 years ago

    That temperature can certainty be an issue! It’s very hard to make it so it’s not too warm. You are right, getting dressed can pose some issues too!

  • Nanny to 4
    4 years ago

    When I am supposed to go to a function, I start STRESSING out even the day before knowing that shower before is going to be too much!!!! If possible, I shower early in the day. I know you pain !!!!!!!

  • Rob
    3 years ago

    Then the pain meds make me so tired on top of fatigue I don’t want to go, or can’t! You guys are a life saver for putting my feeling into words!

  • Kera
    3 years ago

    I thought I was the only one. I will look at the week ahead and like a chess pro figure out the best days to shower to optimize distances between them…so very sad

  • Devin Garlit moderator author
    4 years ago

    It really can become a source of stress (and we all know what stress can do)! Showering early is always the best option!

  • myshelly
    4 years ago

    I have the same issues.I can’t take a shower every day either. Sometimes it takes all my strength just to take a shower and then go back to bed.

  • Devin Garlit moderator author
    4 years ago

    It really can be SO exhausting! Thanks for reading and commenting, though I hate hearing others have the same issues at me, it’s still very comforting.

  • lucillemar
    4 years ago

    I love reading these comments and can totally understand everyone’s situation….my family/friends I feel think I’m over exaggerating about the shower but it is so energy zapping…I too have accidentally put body soap on my hair and/or used conditioner before shampoo…geesh! Frustrating waste of supplies. It never ceases to amaze me how easily I get confused when I’m trying really hard to pay attention! As far as I know I have RRMS and was diagnosed in 2004. When I can, I just laugh at myself and thank God for every day.

  • SweetSunshine
    2 years ago

    I laugh at myself Often. And when my PCP was going over my Chart to be sure that she continues to revisit each issue to be sure that She and my Neurologist stay on the same page.
    1-MS
    2-Fibromyalgia
    3-Diverticulitis
    4-Vertigo
    6-Arthritis
    And I just Busted out laughing and said, Well look at me I’m just a Little Train Wreck wrapped up with a little Ray of Sunshine.
    Yes Just Keep Laughing Trust Me it’s healthy for us to laugh. Half of the people I associate with have no idea I even have anything wrong with me. If I’m in bad shape I stay home. So I’m rested when I do go out, I don’t want pity from anyone. And if Someone mentions to me once they do find out!
    “ Oh No I Heard you have _________________\\________\\________\\_____\\\\\\ I always respond with.
    WOW Was I Acting like there was something wrong. And if they say No than I Politely Respond Great because the nothing wrong Look was what I was going for.

    I just busted out laughing

  • Devin Garlit moderator author
    4 years ago

    When friends and family don’t understand (and it’s very hard for them to), it’s extremely frustrating. I think one of the benefits of sharing articles from this site is helping to explain what it like to them. That’s how I got involved here, because I just couldn’t explain it properly. Sometimes when people see it from a stranger and in writing, it’s a bit easy to “get”.
    and Laughing is always the best medicine!

  • B.L.
    4 years ago

    This is Very True! I miss the days when I could take a warm shower ! And one day I said something about being able to tolerate warm water for a few seconds in front of someone that doesn’t have MS….I got looked at like I was a creature from the black lagoon! I sooo miss the days of warm showers., even that little thing is a luxury when you have MS.

  • Devin Garlit moderator author
    4 years ago

    I miss it too. And you are right, you get some strange looks when you mention it. People love that hot shower!

  • kytten
    4 years ago

    i’ve been sitting on a upside-down milk crate with a towel folded up ontop of it in the bathtub to take a shower. my Husband helps wash my hair and my back, and i do the rest to the best of my ability. my bathtub is far too small for a bath (or a shower chair, those things are big, oddly enough) and i’ve always hated them anyways. (Sitting in a soup of your own dirt? Yuck!)

    Even with all of these precautions, i find myself washing my arms (or whatever) repeatedly, because my brain just didn’t tick off that box that said “Showering? Arms washed? [ ] Yes!”. It’s so frustrating.

    And even with the sitting down and not doing most of the work, standing long enough to get the backs of my thighs and my buttocks washed, and a good rinse down, then towel dry, is utterly exhausting and i’m prone to horrid vertigo, overheating, and nausea.

    If only we could all have one of those luxury showers, with a nice seat and a few showerheads pointed at you from all directions. And someone to do all the work! Thanks for the article. Knowing that other people deal with the same things you do really helps you to know you’re not alone, even though you know you can’t possibly be.

  • Devin Garlit moderator author
    4 years ago

    And thanks for the response. It’s nice to know we aren’t alone, even though I wouldn’t wish it on anyone.

  • SheriS
    4 years ago

    Thank you so much for writing about this! I was diagnosed with MS when I was 18, and I’m almost 35 now. Showering has always been a huge issue for me. People never understand why. Just looking at me, you wouldn’t know that I have MS. Since I was so young when I was diagnosed, people would think that I was just being lazy or making excuses. It’s so good to hear that I am not alone in this. Keep up the good work!

  • Christina Mattoni-Brashear moderator
    4 years ago

    Hi Sheri, We’re so glad to hear that you found this article helpful! Thanks so much for being a part of the MultipleSclerosis.net community and for sharing your positive attitude—you’re definitely not alone in this! Take care, Christina (MultipleSclerosis.net Team)

  • Mhewish
    4 years ago

    I once poured shampoo from my hands into both my eyes because I was rushing. My slow MS hands couldnt keep up with what my brain was wanting them to do and I as I looked up, bent my head back, I poured it right into my eyes!

  • Devin Garlit moderator author
    4 years ago

    That kind of thing happens to me too. My hands, arms, and head get so out of sync sometimes.

  • Lisa M
    4 years ago

    Great comments here! I was DX in 2007 and could still use the tub/shower back then, but 2 years ago we replaced the tub with a shower stall, it made all the difference, recently I had to add s shower chair, vertigo and leg weakness just too bad to shower safely. now I sit in my chair, lean against the back wall and I have 2 grab bars for when I get in and out, I close my eyes just long enough to rinse my hair, otherwise its spin city! I cut my hair shorter so that cut down shower time too, every little thing you can do helps!

  • Devin Garlit moderator author
    4 years ago

    Those shower stall really can make a huge difference when compared to navigating over a tub. Happy to hear you’ve adapted well to the situation!

  • CoastLover
    4 years ago

    I could have written this myself !!! Everything you covered is so me……Thank you Devin !!! 🙂

  • Devin Garlit moderator author
    4 years ago

    Thank you for reading!

  • lgoddard
    4 years ago

    Oh man, you hit the nail on the head, Devin. Showering has to be my most frustrating daily task (although I, too, admit that I don’t shower every day; there’s just no way I could do that every day).

    I do have a shower chair which helps a lot (I forget just how much until I’m travelling and in a hotel bath – argh). But I’ve definitely washed my hair more than once at a time or accidentally put body wash in my hair due to cognitive issues.

    I honestly didn’t realize other people had the “totally exhausted after a shower so I need to lay down NOW.” I thought that was just me. Honestly, sometimes afterward, it’s all I can do to get back to my bed and collapse for a good 15-20 minutes (at least) underneath the overhead fan to calm me down/cool me down. Now on top of that, imagine if you had to blow-dry your hair or straighten it. All that heat right after showering! I usually try to shower before bed then do things like straightening my hair the next day.

    People just don’t realize how much the little things become huge mountains to us, but it’s very encouraging to know I’m not the only one and you guys understand what I go through.

    Cheers.

  • Devin Garlit moderator author
    3 years ago

    That’s good to know Bill!

  • Bill in Montreal
    3 years ago

    I have found that nearly all hotels have chairs available. Just ask.

  • Devin Garlit moderator author
    4 years ago

    Thanks! I knew I couldn’t be the only one. I mentioned it to someone else and they agreed, that’s when I decided to write about it and see if others felt the same way. It’s apparently a pretty big problem for a lot of us!

  • CoastLover
    4 years ago

    I feel exactly the same !!! I didn’t realize it didn’t only happen to me. I don’t shower everyday either…too hard. 🙂

  • J R
    4 years ago

    Oh thank you so much for this article. When I purchased my house fifteen years ago one of my ‘add ons’ was a soaker tub. I used to take a bath at night and a shower in the morning. I do have a grab bar and a chair. Just the thought of having to sit on the chair sideways and swing my drop leg over the high edge, taking the shower and negotiating out of that high edge is exhausting. I can sit on my bed longer than I should just so I can tell myself I do not have time to take a shower now. I live alone during the week and it is daunting and SCAREY. I just had an estimate on a walk in shower and it is about 8k, and no, insurance does not cover these things. Thanks again for this article!

  • Azjackie
    4 years ago

    I am all about searching for helpful information and affordable sources within my community. I have found help in my local community hospital, retirement homes, local physical therapists, my Neurologist office, urgent care facilities, pharmacies, and home improvement stores.
    I am lucky within my town with my monthly water utility bill there is a volunteer free program to assist the handicapped (pull weeds, garden, yardwork, cleaning house). Oh and I would try churches.

  • Devin Garlit moderator author
    4 years ago

    Thanks for reading! I have days too when I worry about showering without anyone in the house. It’s super scary! 8k is a lot! You should inquire with your local MS Society chapter, sometimes they can help with things like that.

  • Interested User
    4 years ago

    I understand what you mean about decision making and choices as to whether to shower or not! I wish you well and hope that you are able to live as normal a life as possible with these circumstances. I expect the first step is to simply call the insurance company and see what is covered and what is not. Next step, contact the MS Foundation or a similar organization and see what they have to say about help with expenses related to devices to help with ADL’S. Good luck to you!

  • J R
    4 years ago

    And I have a large supply of adult hygiene wipes…

  • Catgirl66
    4 years ago

    Also “fun” is standing outside of the shower, in a comfortable temp, on a dry floor & almost falling IN! Explaining that one definitely got me some weird looks. Almost made me wish I had fallen during my shower. A shower chair & a shower head on a hose are my weapons of choice against hygiene related hazards

  • Interested User
    4 years ago

    Gosh, that would be a funny story if it wasn’t so scary. I don’t suppose you were able to get financial help with the assistive devices? Thanks for the advice.

  • Interested User
    4 years ago

    Thank you for this article. Coincidentally, I have been worrying more and more about the shower situation. Rather, the getting into and out of the shower. Although my RRMS is stable right at the moment, I would like to add a safety bar of some sort to my shower to hold on to as I enter and exit. It’s around $25 but was wondering if anyone knows if insurance generally pays for this sort of thing? With the cost of treating MS and Dr. visits, every little bit adds up. Does anyone know a good resource to turn to with such items as a shower stool and hand held shower head? I was diagnosed in 2014 and as much as I’m learning about the in’s and out’s of MS, I’m still a shy novice. Thank you for any advice you can give about such matters.

  • Devin Garlit moderator author
    4 years ago

    Thank you! And good luck, there are definitely options out there, it unfortunately can take some time and effort but there are definitely good people and organizations out there ready to help!

  • Interested User
    4 years ago

    Thank you so much for your reply to my comment. I just got off the phone with my insurance company and although they are a very good carrier, I was basically out of luck. Your information and advice has helped me tremendously and I’m getting right on it. Will see what happens next, but whatever happens, it’s nice to know that there are people like you who really “get it” and are right on time with such helpful information. Thank you!

  • Devin Garlit moderator author
    4 years ago

    Always better to have safety measures in place before you need them! I’d recommend reaching out to your local MS Society chapter, sometimes they can help with that. Also, the MSAA has an equipment distribution program (along with a great cooling vest program). Here is their link (the equipment info is after the cooling stuff): http://mymsaa.org/msaa-help/cooling/

  • obiwan
    4 years ago

    For me it is the vertigo. I need a spatial reference. If I close my eyes (as you must when you shower) I feel as if I will lose my balance.

  • 1d84c45
    4 years ago

    I have a shower stall and found a shower stool at Amazon that swivels so I can put my back to the shower spray when I wash my hair and can lean my head back to rinse without having to close my eyes. It takes some time to figure out where to position your chair but it is worth it. The stool is great cause I can sit and just turn the stool around without standing up.

  • Sarah R
    4 years ago

    Oh, me too. I used to rent a room in a house that only had a shower stall. I always hated those, but now I miss it. Even if I did lose my balance I’d just hit the wall less than a foot away from me. 🙂

  • Devin Garlit moderator author
    4 years ago

    I have the same issue when I close my eyes, it’s awful!

  • apeofthejungle
    4 years ago

    Great article. As a care giver, I appreciate your honest – it is so helpful for me to better understand the challenges. Thank you.

  • Devin Garlit moderator author
    4 years ago

    Thank you very much for reading it!

  • Togs
    4 years ago

    Hi. I had my first signs of MS in 2011, when my youngest was just a year old. It was tough and confusing and I felt guilty needing to be in hospital for a week. I experience my 2nd attack last year; which was really bad. I felt like I wasn’t me. (You know what I mean). All functionalities was out of order, walking straight, driving, sleeping,eating, seeing, tasting and the list goes on. I recovered really well, with just a little bit of hearingloss and a silly clumsy left arm and leg. I dnt dwell on my silliness of tripping or dropping things or forgetting what I meant to say. However it becomes more prominent on certain days and I can’t exactly say why. I’ve only really dealt with my diagnosis last year but I still feel depressed and sad at times. Im learning more and more about MS. Some days I have no idea whats happening to me and why I feel like I do. Other days I am energised and ready for anything! I just want to say that I am really greatful for the articles and platform to discuss and learn from other people who share the condition. Thank you

  • Devin Garlit moderator author
    4 years ago

    I certainly understand what you have been going through. Always remember, you are never alone and you are never crazy. The depression that comes with the disease is so often not given the proper acknowledgment it deserves. I find it very helpful to read about or even talk to other with the disease. I find there is just something assuring about knowing that you aren’t alone. Hang in there, there will be tough days but really great days too!

  • Angela
    4 years ago

    LOL! I read this and was like, “Yes. Check. MmmmHmmm. Been there!, etc).

    My solution of late has been to shower at night, so that I can just get in the bed and sleep afterwards, and to use baby wipes to keep fresh between showers. It’s really the only solution that’s worked for me. I figure as many times as I’ve forgotten and washed twice (hello, cog fog!), I can skip a day or so without too much of an issues, LOL!

    Thank you for expressing what so many of go through doing just the most routine tasks…and how much more energy, physical, mental, and emotional, it can require of us!

  • Devin Garlit moderator author
    4 years ago

    Thanks for reading. I like that idea of using baby wipes to freshen up! I use a wet washrag on those days where taking a shower just seems unthinkable but I like that idea even better!

  • Azjackie
    4 years ago

    I find this article very helpful with understanding. You were reading my mind.
    The struggle with the shower isn’t every time either. It may come with different symptoms too. I’ve tried cooler water but ended up shivering up to an hour later. I have a large stand up shower with benches. I find that very handy. I agree speeding up is the key. I find it helpful if you’ve had a long day try to relax before the process. This helps me with overcoming exhaustion.

  • Devin Garlit moderator author
    4 years ago

    I’ve finally got a stand up shower with seats as well and wow, I couldn’t imagine not having that these days! Though I hate to hear that others have the same issue as I do, there is certainly a little bit of comfort in knowing I’m not alone.

  • Sadie
    4 years ago

    This is a fantastic piece and I’m printing the article to show friends. I’m blessed in having a few steadfast friends that truly want the tools and knowledge to better understand what I’m facing. You covered all the aspects that are also a problem for myself! Thank you for all the articles you write and when it comes to MS and many other things, Knowledge really is Power!!

  • Devin Garlit moderator author
    4 years ago

    Thank you so much for reading them and sharing them! One of the big reasons I write these types of things is so that it’s easier to share the info with others. I started it because I wanted a better way to explain to my own family and friends what it was like!

  • Dogtooths886601
    4 years ago

    I love the article and the information contained within and empathise with people down this Relapse/remitting path (My views probably show I have only recently been diagnosed with this disease).

    I am still very much coming to terms with the diagnosis and have clearly struggled with the cognitive issues. The short of it is was that I have developed countless strategies at the subconscious level and although I have a first class honours degree, masters and PhD; all of these I have done at the slower, gentler pace of university study. Although I enjoy distance running and am a very dedicated and proactive employee, I have never been able to operate at the pace of my colleagues in high flying jobs.

    My point is this (sorry it took me my time to get there), many of my issues and the issues discussed in this article are of course due to the MS symptoms. Surely, though, they are problems that many of my friends suffer from? The forgetfulness etc is something we all face and must tackle. Like Nobue infers, do we not just fight our personal battles.

    I know I am naive and we need a forum to discuss our issues. I also know that I am at an important crossroads in my career (which I accept that I am lucky) in which I can continue in my new teaching career which will provoke more relapses or can look to retrain in a less stressful career.

    I hope I have not offended, but I feel this discussion is important. Should we dwell on our condition in this way?

    Many thanks for all your time,
    John Pawson

  • mario lobo
    4 years ago

    John,
    Your points are well taken. I am a caregiver for my wife who initially experienced 14 years of remitting and relapsing MS. During much of that time she was experiencing mild symptoms that, as you point out, lots of people without MS deal with as a normal part of aging. That being said, as her MS “matured” and she transitioned to progressive MS, the cognitive issues she experiences are so pronounced that they cannot be confused with the forgetfulness that many of us experience as part of normal aging. I just picked the cognitive issues as an example. She has a panoply of symptoms that are severe and could not be compared to the typical loss of strength and balance that everyone experiences as they age, incontinence issues that exceed those that everyone experiences as they age, random pain, etc… The list goes on an on. When she was in her early remitting relapsing stage, she didn’t let her MS define her and she didn’t dwell on it. Over time, however, if one’s symptoms progress to a certain degree, it’s hard NOT to let one’s MS define oneself, and it becomes increasingly difficult NOT to dwell on the symptoms and to dwell on all that is involved in trying to combat them and adapt to them.
    I don’t think your comments were at all offensive. When I discussed this with my wife, she agreed with you 100% – Don’t dwell on it until and unless you reach the point that you have no choice.
    Mario

  • SweetSunshine
    2 years ago

    Mario
    I couldn’t agree more, as i mentioned, so many people have no idea about my Medical issues and that’s for a reason because I believe that Pity Drives Depression that drives stress that drives Flair Ups, so pushing myself to do all that I can keeps my head right and keeps my Strenght up. And in fact stears my Emotional Balance in a Positive Direction. I have CogFog I see it getting progressively worse. My Neurologist is now switching my Medication from Aubigo to 2 Times a year Infusions. This Fairly new Drug holds high hopes. If i can stop the Progression Of these issues I’ll be so very grateful.

  • Devin Garlit moderator author
    4 years ago

    I don’t believe you’ve offended at all. Discussion is important and a huge reason I wrote this article. My hope for this and any articles I’ve written is that it’s a jumping off point for discussion, not only between those of us with MS, but people with MS and their friends and family. I often try to highlight some of the issues that many people don’t realize are pretty common for people suffering from MS. I probably should have also noted in the article that, although most of my 17 years with the disease has been relapsing-remitting, I am not at a stage where I’ve entered secondary-progressive (but seem to now have that in check after finding the right med for me). My issues are from damage that’s been done in the many relapses I’ve had over the years. I should have also stressed that while I and many have these issues, many with MS do not. MS is such snowflake disease (sorry if you’ve heard that too many times at this point) that we are pretty different. My hope is always to tackle a particular issue that some people may have though, and again, create discussion.

    Speaking of cognitive issues, I wrote something about that previously too and would love your thoughts on that too: https://multiplesclerosis.net/stories/cognitive-dysfunction-scary-invisible-fight/

  • Matt Allen G
    4 years ago

    NUMBER ONE ISSUE FOR ME: balance. Standing in the shower feels like I am trying to balance on a wire 3,000 feet above the ground!

  • Sarah R
    4 years ago

    This is a problem for me too. The solutions I have come up with are A)a shower mat to prevent slips B)only closing my eyes when I’m washing my hair and then leaning against the shower wall and C)getting a showerhead on a hose that I can use while sitting down. Since I’ve gotten those my problems have greatly reduced although my shower fatigue never goes away.

  • obiwan
    4 years ago

    My doctor said that is commonly known as “origin vertigo”.

  • Devin Garlit moderator author
    4 years ago

    Oh yeah, just standing in the shower feels like I an on the edge of a giant mountain at times!

  • Nobu
    4 years ago

    Get a small shower bench and a handheld shower head extension – make your life easier. Save your energy for other stuff.

  • Devin Garlit moderator author
    4 years ago

    Thanks, I do have a stand up shower now with a seat in it. Even if I don’t always use it, it’s so nice to have!

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