Some days are harder than others. How do you manage the tougher days?


Community Answers
  • RobWelsh
    1 year ago

    Stay with ‘The Life-Changing Magic of Not Giving a F*ck’
    https://www.youtube.com/watch?v=GwRzjFQa_Og

  • vlaurie01
    1 year ago

    I try a warm bath, stay quiet, pet my dog for the comfort, meditate, speak with friends via phone or social media while resting, eat healthy.

  • Louise
    1 year ago

    I was diagnosed in 1981, but symptoms started in 1979. 38 years has been a LONG journey battling this monster. I have survived just about everything it can punch you with, including being permanently wheelchair bound for the last 12, I am blessed to have my wonderful husband who has been with me through the entire journey. I also have a caregiver for 4 hours during the week days while my husband works.

    I have been writing about my ms since 1995. To help ease the tremendous physical and emotional ups and downs, along with the joys and blessings. Just this past September 2017, my book was published. I feel SO good that I was able to accomplish this. If anyone is interested, my book is entitled ROLLING WITH THE PUNCHES; My Persevering Battle with Multiple Sclerosis By Louise Huey Greenleaf. Thank you very much!

    Editor’s Note: Due to our community rules (https://multiplesclerosis.net/about-us/community-rules/), we had to remove a line from this comment.

  • Maris
    9 months ago

    How did you find a.. publisher for.. your book?

  • potter
    1 year ago

    I have learned not to feel guilty about not accomplishing anything when I am having a bad day. It took me a long time to get to this point. I did have to do some house cleaning the other day. I didn’t get everything done but that is alright, I am lucky my husband doesn’t care if the house is clean but when the ceiling fan looks like it is wearing a fur coat, you need to clean. Potter

  • Guitar-Grrrl
    1 year ago

    Fatigue, spasms/spasticity, intention tremor… every day includes all of these symptoms. On “special” days, I’m treated to trigeminal neuralgia. My brain shuts off at about 3pm, so no more evening classes for me. On the rare occasion I go to parties, I get to deal with hyperacusis, and I usually beg my husband to take me home after about an hour. Babysitting my grandkids has to be for short times, and gratefully, my daughter understands. I meditate every morning. I rest/nap in the late afternoon. More and more, I enlist my husband to help with cooking. He does the vacuuming (woot!)

  • Erin Rush moderator
    1 year ago

    I am sorry you are so familiar with those tough “MS days”, Guitar-Grrrl! It sounds like you have figured out how to best care for yourself on those days and I think it’s great that your husband is helpful around the house. He sounds like a keeper! Thank you for sharing. Best, Erin, MultipleSclerosis.net Team Member.

  • Shannon Nicole
    1 year ago

    Try to get more rest if possible. That always works for me until it all creeps back within an hour or two.

  • glalonde
    1 year ago

    Rest & pray

  • Azjackie
    1 year ago

    On a bad day I start by sleeping in to avoid the back breaking back pain. I creep to the bathroom walking along the furniture to take my a.m. Ampyra and maybe a couple pain killers then creep along the furniture back to bed to overcome my dizziness. I usually neglect myself until the evening until I decide to eat something with a couple more painkillers. Depending on the pain intensity I just lay weeping. If not the bed where I have fallen on the floor.

  • glalonde
    1 year ago

    I have those days when I wait too late to take pain meds because I’m trying to do alternative methods to avoid pain meds. So when I do take them it takes longer to ease my pain.
    Pain meds don’t agree with me. It adds to being tired & get off balance

  • rmdanielsom
    1 year ago

    If you are easily offended, don’t read this–stop right now. This is my MS reality. A
    “tough day” is every day with MS. If you mean a really bad day, then: Cancel all plans; pain meds; muscle relaxants; sleep, if possible; wait for a better day. This is a tough day; my “normal days” are just another day from hell with fatigue, tone, spasms, cramps, restless leg syndrome, pain and minimal sleep. Warned you.

  • glalonde
    1 year ago

    Yes I cancel plans too. I try to not dwell On feeling sad because of my cancellation. I can get down so fast if I dwell on my situation. The poor me syndrome. Life is not easy with MS but I keep fighting.

  • Kimmyref
    1 year ago

    I have RRMS, I like to joke and say that every morning is a new adventure. I’m never sure what will work properly and what will not. I have learned to listen to my body, take things slow and rest when needed. I’m a neat freak, so I want things a certain way but I’ve had to realize it’s ok if everything doesn’t get completed there is always tomorrow, and my health is more important. (I’m still working on this one)

  • Kelly McNamara moderator
    1 year ago

    Hi @kimmyref. Listening to your body can be so important! Thanks for sharing with the community! – Kelly, MultipleSclerosis.net Team Member

  • glalonde
    1 year ago

    Yes listening to your body helps when U start feeling bad

  • Primrose68
    1 year ago

    LUVMYDOG !!

    PERFECT !!!

  • 61b9sa
    1 year ago

    My bad days…. I try to warn everyone. That way they can try to keep their distance as much as possible. I have RRMS and I’m fortunate enough to still be working full time. My bad days usually put me in a very angry, weepy, emotional roller coaster kind of way. You never know what might make me snap. I try to stay aware of what is happening and keep it under control while crying on the inside and sometimes on the outside. By the end of the day, if my husband is home, he’ll rub my legs down with bengay or something to help with the pain. Most times he’ll get me dinner and take care of any chores that need done, like feeding the dogs. Then he makes sure I get to bed early.

  • Primrose68
    1 year ago

    I work at my computer, getting up every 15 minutes or so to do a chore-then back to the computer. If I am extremely fatigued, I do what I can -when I can and- tell myself “Good Job !”
    I live basically alone, so, I don’t have to worry about major meal prep!

    I met a man the other day who said his mantra is “I LOVE ME “- Came home and heard it on Alexa-karma ! It’s also a good mantra-You don’t have to Love MS-who does-but-it is a part of us, and, barring a miracle cure, will be with us forever. Best advice I have ever had was “take Care Of Yourself-” or – in other words “I LOVE ME “.

  • nikole201
    1 year ago

    My tougher days are met head on with lots of anguish and thoughts that tomorrow will be better. My muscle spasms and heavy rain are the source of my MS complexity. I have to rely on pain pills & antispasmatic pills to help me through those days. I resent having to use a cane at the age of 34 & having people tell me i look fine. Everything isn’t always apparent on the outside so I usually stay home from work & out of public on these bad days. Sleeping my tough days away just,get me through.

  • LuvMyDog
    1 year ago

    I do what I can. I used to be a fanatic about cleaning, dusting, vacuuming, everything had to be in it’s place, exactly in it’s place. Now, I just don’t care anymore. Some days I care, most days I don’t. Much of that has to do with depression. And a lot has to do with pain and terrible fatigue. Not sure which is worse. There are some things that really must get done, the basics, dishes, the wash, and I push myself to do as much as I can in a day. I take naps when I am tired. And now I stay and bed and rest when I haven’t slept too well. I used to think it was terrible to stay in bed after a certain time of the morning….that ship has sailed too. I just don’t care anymore.
    I…am more important than a few dishes waiting to be washed or a basket of laundry or anyone’s else’s opinion of what I should and shouldn’t do.

  • Primrose68
    1 year ago

    I work at my computer, getting up every 15 minutes or so to do a chore-then back to the computer. If I am extremely fatigued, I do what I can -when I can and- tell myself “Good Job !”
    I live basically alone, so, I don’t have to worry about major meal prep!

    I met a man the other day who said his mantra is “I LOVE ME “- Came home and heard it on Alexa-karma ! It’s also a good mantra-You don’t have to Love MS-who does-but-it is a part of us, and, barring a miracle cure, will be with us forever. Best advice I have ever had was “take Care Of Yourself-” or – in other words “I LOVE ME “.

  • Kiki0514
    1 year ago

    The tougher days are usually met with a deep breath & an understanding that it’s to be expected. It’s usually best to have a Plan B & C when it comes to MS.

  • Kelly McNamara moderator
    1 year ago

    @kiki0514, having a plan, b & c, and maybe even d, e, and, f can be so helpful 😉 Thanks for sharing!!!

  • Leta Reiter
    1 year ago

    I am a huge believer in listening to my body. If I am tired I rest and if I have an appointment I try my best to get there, but if it is really bad I reschedule. I am very fortunate that I have relapsing remitting ms and am not experiencing the crippling affects so many people have. Pain is my biggest obstacle and I hate to have to depend on pain medications, but sometimes I must. I am constantly trying to rub away the pain. I get funny looks from people in stores when I am rubbing my butt or legs without a thought of how it looks. You have to laugh at yourself on occasion.

  • Carol
    1 year ago

    First, we cry, usually a lot. Then, we have to figure out what has to be done that day. If it’s just laundry, we can get the clothes into the washer and dryer. Major problems if there has to be ironing done. That is quite a struggle even wearing a back brace, very tiring, and takes a very long time. If we have appointments, then we call the taxi company and tell them that I will require assistance from the driver both trying to get over the curb and also when we are at the, say dentist’s office, getting out of the cab. I struggle when I’m in their office and usually people assist me. Then, back home again, I did little things until my husband comes home, takes a nap, and makes us dinner. I usually try to do the dishes and clean up after him. And, I can’t stay up late and go to bed early.

  • vivy
    10 months ago

    Hello:) i am new here. First going through tests. I have jsd many symptoms for about 3 or 4 yrs. First started with pain in my leg(more like calf and foot.) Especially during menstrual cycle. As the yrs went by symptoms got worse. Leg weakness went all the way up the leg now, got numerous mri’s the most recent one 2 yrs ago it showed tiny lesion on frontal lobe. My neurologist said to leave it alone. Every few months as symptoms kept getting worse i asked doc if i should take another one. He said no. 2 yrs later as i mentioned. Leg weakness is all the way up my leg. I can lift it when sitting and lying down. I miss steps sometimes and walkinv up stairs gets me winded. Anybody else experience more pain during periods?

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