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Advice from the experts…those actually living with multiple sclerosis

I asked people living with Multiple Sclerosis to share a piece of advice that they feel would benefit those newly diagnosed with MS. The response was overwhelming and very informative. I put together a list of their answers and hope it will encourage even those who have been living with MS for years.

If you are newly diagnosed, know that you are not alone. If you have been living with MS for years, sometimes reading a list like this will encourage you and help you to shift your focus back to things that are truly important in life.

The most recurring advice from people living with MS
  • Stay calm, you are not alone.
  • Stay positive. You will have good days and bad days.
  • Surround yourself with positive people.
  • Laugh.
  • Exercise.
  • Fight, fight, fight.
  • Have faith.
  • Take one day at a time.
  • Don’t panic.
  • Love yourself.
  • Keep living.
  • Be your own advocate.
  • It’s not the end of the world.
  • Listen to your body.
  • No matter how hard it is, DON’T QUIT.
  • Breathe.
More great advice, information and help from some amazing MSers

Not everyone’s MS is the same. What course of treatment works for me, for your cousin’s best friend’s boyfriend’s grandma, or your neighbor may NOT work for you. – Erin

Kick people who tell you about someone they know with MS climbing Everest or cycling around the world…so you can too. Oh, and get the old person attitude of saying what you think. – Leigh

Don’t start the meds the next day. Investigate, talk to others who use the meds, read up on them, join MS groups, get a couple of 2nd opinions, find a neurologist who knows about MS (not all do). Do some investigating on your own. – Melissa

It’s time to take exceptional care of yourself in EVERY way because you are sick and need it. And your life will thank you for it. Don’t listen to the horror stories, just live it up and REFUSE to LOSE. Rest when you really need to but not so much you forget how to walk. Practice walking every day so your brain always remembers how. – Chelle

Be who you are and not a diagnosis. – Chris

You know that song by Time McGraw, Live Like You Were Dying? Listen to that. Then pick yourself up and give it your best shot. – John

Drink lots of wine. :))) – Aistė

Don’t tell everyone right away, just those closest to you. I made that mistake. I spent most of my time trying to help everyone else through my diagnosis. People created so much drama and negativity. I wish i would have waited until I was more adjusted myself. – Cindy

Don’t wake up looking for your MS symptoms. Get on with your day just being you and live your life. Be prepared to rest and alter your day if your MS decides to appear. Sometimes it does good to slow down and “remember to smell the roses.” – Jacki

Just because they are doctors that specialize in MS doesn’t mean they walk with it. Research the things they tell you that sound off or weird. Get 2nd opinions. If your gut says no, then it’s probably a no. – Chula

You are allowed to fall apart…for a little while. Then get back up, smile and get on with it. – Odette

The journey has a lot to do with you…your attitude, discipline, diet, exercise, supplements. The best doctor is Dr. You! – Vince

Hold on, it’s a bumpy ride. – Shari

Know that your MS is unique to you and you only. Don’t get scared if you know of someone with a hard hitting, rapid progressing form of the disease because that doesn’t mean it will happen to you. Listen to your body and do what makes you feel better, and never underestimate the power of exercise, healthy diet, rest and laughter. – Danielle

Say hello to the new you. Never compare yourself to who you have been. – Sara

Never let anyone, especially yourself, make you believe that your symptoms are not real, or not that sever. They are real, own it, accept it, learn from it, and learn how to be happy around those limitations. No matter how many comparisons people make, remind them (and yourself too) that they are irrelevant to your issues. Your MS symptoms are just as valid as anyone else’s medical issues. You have value, and the hardest work you can do is making sure you believe that. When MS symptoms hit…and they can hit like a truck, you are valued. You are valued in those who love you, those who treat you like a person, and most importantly, you are valued by yourself. The most important person to be valued by. – Rich

Get YOUR GAME FACE on! – Jyme

Someone will love you for you…be patient. – Steph

If your body says it’s tired, rest! I used to think I was Wonder Woman and had to do everything in one day. My philosophy is that it will be there tomorrow. It’s not an easy journey, but you got this. I am a firm believer that if He (God) brought you to it, He will bring you through it. – Cathy

Only read stuff online from reliable sources. I over read and freaked out. – Netty

The worst scenario you have in your head may not be your destiny. Take it one day at a time. There are scientists working on this, and I think there’s light at the end of the tunnel. Keep pushing on. – Jennifer

Pray lots. Pam

…When you find that you can’t do the things you like to do because your MS won’t let you, be creative and find other ways to make it easier to do those things. Find a new hobby that your MS will allow you to do and don’t be afraid to ask for help from someone. Allow yourself to have more time to get things done. I like to have supper at 5:00. I would start at 4:00 and have no problem, now I prepare everything ahead of time like cutting up my onions, peppers or any thing else that can be done early. Just learn to adjust your routine with your MS so that you can still feel like you are on task. Give yourself extra time to get to where you have to go. Leave earlier then you would normally leave so you don’t feel rushed. Do the things you love but in a different way. – Karline

This episode will improve, but your health will now be unpredictable and never the same again, so make the most of life when you’re feeling good and be prepared for set backs. – Stephanie

Learn to laugh at yourself, because the world is going to laugh. BE KIND TO YOURSELF: allow yourself to have those days when you don’t belong on a ladder to change a light bulb and perhaps shouldn’t leave the house unescorted! – Kathy

You are always gonna be YOU, never lose sight of that. – Evie

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About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

13 replies
  1. Karen
    Karen says:

    I love this list! It has helpful ideas and very helpful reminders to allow yourself what you need! I forget sometimes to do that. I really liked the one that says not to compare yourself to who you used to be…I have lots of trouble there ..biggest issue, I need to learn to love myself this way…
    It’s really hard though. 😔

    Reply
    • jazzinco
      jazzinco says:

      Here’s a poem i made up for us all…
      💛💙💖😻😍😍😃😄😘
      I Can Laugh @ M.S. Now!

      I stumble, I stutter, I sometimes fall, I cry, I scream, I so wish this was only a bad dream…

      I lay on the couch w/pillows behind me, I’m getting tired of all stares I get from others, if I had my druthers, I’d pick a better life, where I can walk & talk right…

      So in this blight of my life, I can maybe smile, for just alittle while, & now I just take it in stride day by day, just looking @ all the beauty positively & laugh @ all this pain, & thru the rain, I see a beautiful double rainbow…🌈🌈

      Yes, i can laugh @ M.S. now, don’t have to frown no more, I can shut the door to being down, I’m walkin around this town; head held high w/cane in hand or w/c cuz sometimes i can barely stand. But thru it all, i’m still standin tall inside, I can now laugh & don’t need to hide…

      I laugh thru the tremors of droppin thngs, i can laugh thru the little falls & thru it all!

      WE CAN LAUGH @ M.S. NOW! Don’t let it have victory! Take back our victory over it!!💗👍❤💛💙💖😻😍😍😃😄😘

      Reply
  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    What a great list of good reads. It shows there are great people out there who know how to live with this mess. There are some brilliant ideas there and worth to follow.

    Reply
  3. V
    V says:

    Thank you I needed someone to remind me as today I feel really mad, angry and fed up with this condition. I wish I could freely get up have a shower get dressed and go for a walk. This being dependant on others and hoists chair et al.
    Then I read this and I remember my own motto I get down but I get up again you’re never gonna keep me down! Thank you all for reminding me I love this caring support we all have Much Support its what MS means

    Reply
  4. CLIVE WHITESIDE
    CLIVE WHITESIDE says:

    Thanks for taking the time to drawn up this list there is a lot of great advice on there for us all

    Reply
  5. Tilly
    Tilly says:

    thank you, lots of good points
    my mantra to me?
    do what you can, once you get tired/sore, stop, have a break,have a cuppa, then start again if you feel up to it. Don’t try push through. Give yourself a break, if it takes 2 hours not 1 – so what? Look after yourself, put yourself first.

    Reply

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