A life with Multiple Sclerosis is not easy

A life with Multiple Sclerosis is not easy. Maybe it is for those living with a benign case of it, or for the ones that progress so slow that their symptoms are negligible or only slightly irritating. If all cases of MS could be so simple I would be extremely grateful and probably even do the happy dance in the middle of Main Street.

For many of us though, our days are more like a cross between a hard time and an intense struggle. Our daily routine is one of adaptation, change and change some more. MS is unpredictable. More unpredictable than the weather. Will it rain today? Snow? Maybe the sun will come out? Will I need to use a cane to get across the parking lot or do I need to be on the lookout for an available motor cart? Will my legs work, my vision stay clear, my hands cooperate, and my body behave?

I may not be able to control what my body is doing from one minute to the next, but there is a part of me that I do get to determine. I get to choose my reaction to the things happening around me. I get to choose whether I give up or keep going. I get to choose if I smile or cry. I get to choose bitterness or thankfulness. I get to choose whether I laugh when I end up on the floor while transferring from my bed to my wheelchair or if I sit in a puddle of self pity on the floor moping about how hard life can be.

Let go of yesterday. Let go of the hurts that come from not being able to do the things you used to do. Let go of the pain of change. Let go of the fears. Let it all go.

Sometimes we have to let go of the person we once were in order to see the amazing person we are becoming. You get to choose who that person is. I know I see greatness in you. I see someone who is brave, strong and courageous. Someone who has been dealt a terrible hand in life yet is still trying to make the best of it. Someone who isn’t perfect, but then again who is? Someone who is weak in their body, but oh so strong on the inside.

I hope you can see that too.

MS Gets on My NervesMS WarriorMS Superhero  

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.

37 replies
  1. Brenda Mclaughlin
    Brenda Mclaughlin says:

    I have got to the stage where I laugh at myself and some of the things I say like hair dye with no pneumonia in it, or instead of marinating the meat overnight , I should have urinated it.i have just written a book about my MS . It is MWs book you will have a laugh and that’s what people like us need x

  2. Brenda Mclaughlin
    Brenda Mclaughlin says:

    So true I really wish people would find out about it because they think I am drunk. I have PPMS and I know all about progression, I hate it , and no cures for PPMS. Take care luv Brenda McLaughlin x

    • Melissa Williams
      Melissa Williams says:

      I am the same way I have horrible spasms and am also in a wheelchair but only when I go out I can walk around my house but with a walker I can’t walk without my walker it really makes me very sad I have really great support from my husband and my son who is 10years old but I truly wish he could have known me when I was able to do anything but I really can’t think like that I need to stay positive and realize it is what it is and I have to concentrate on making my name life the easiest way of living the best life I can

  3. Jean Stein
    Jean Stein says:

    I have had MS since I was 21. I am 66. Last year, my neurologist told me I was not going to die from my MS. She told me I had “made it”. So, a couple of months later, I found out I have triple positive breast cancer. So, if it’s not one thing, it’s another.

    • Lisa
      Lisa says:

      Please know that I am 48 and was diagnosed at 25 and I am a vwry bitter person. Reading your post smacked me over the head and told me things COULD be worse-in an instant. My thoughts are with you and am sending hugs! Please know you changed my attitude today, when I REALLY needed it!!

      • Melissa Williams
        Melissa Williams says:

        I really get frustrated with the internet because I started writing a reply to you Jean Stein and it got lost some where I don’t know what I did but it is just gone so I will try to write it again I am very sorry for your new diagnosis but I want to say I think things happen for a reason I know it is really scary but I don’t think anyone gets things they can’t handle I don’t know how you feel I would be devastated but I know everything will be ok for you just don’t lose hope if you ever want or need to talk I am here everyday all the time so you can email me keep your head up the best you can and God bless you hun

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Hi Penelope I went to the gym today and feel great. I was pleasantly surprised how much I can do. It’s the first time in a gym so I didn’t know what to expect. I did want to strengthen my arms for use on the wheelchair but found my legs are not as bad as I thought which made me glad. I’m going on Monday to see if it wasn’t a dream.

  5. Mary Kinnear Harvey
    Mary Kinnear Harvey says:

    Your not alone Emma Edmunds I have mood swings it can be something really silly that puts me in a downward spiral I hate it and the ‘poor me’ feelings make me feel bad for my family having to put up with me when I’m like this

  6. Emma Edmunds
    Emma Edmunds says:

    Does anyone else suffer from mood swings with Ms or is it just me being a cow? I have first mri after dx on Monday and am already getting worked up about it. Self pity is soooooo not attractive!!!

    • Melissa Williams
      Melissa Williams says:

      Omg my mood swings are just terrible I can’t help it I feel bad for my family my husband and my 10year old son it seems like I am always in a bad mood because I am in pain always really sucks for all of us

  7. Roland Clarke
    Roland Clarke says:

    Sadly, when I had benign MS the doctors gave me nothing to stop it progressing, and when I had relapsing-remitting they only gave me drugs for the symptoms not disease modifying ones, Now that I have 2PMS and I’m in a wheelchair, my days are often bad. But at least I can be uplifted by your posts, and by knowing I now have a neurologist willing to get me on proper drugs.

  8. Lola Hale
    Lola Hale says:

    Wow! Thank you for this. It is as though my fuzzy brain has been read !!XxJust before reading this I was feeling quite low and alone today as I have finally accepted that a new physical limitation has taken effect and is here to stay… . MS is cruel but those that live with it are not xxxx

    • Melissa Williams
      Melissa Williams says:

      Omg my mood swings are just terrible I can’t help it I feel bad for my family my husband and my 10year old son it seems like I am always in a bad mood because I am in pain always really sucks for all of us

  9. Penelope Miller
    Penelope Miller says:

    Hey Penelope, MS is awful. Fortunately there are new treatments coming down the pipeline. I’ve just finished the first course of lemtrada, so grateful for being able to do it. Hopefully there is something for SPMS and PPMS very soon.

  10. Sharon
    Sharon says:

    Thank you for sending a hug and inspiration today to someone in Oregon. The daily challenge of what the day brings is at times a huge hill to climb with legs that don’t
    work. Blessings to you.

  11. Kristine Marie Naef
    Kristine Marie Naef says:

    Going through a rough patch right now, learning yet another “new normal ” thanks for this, I needed it! (Y) I have faith, but I truly believe we get through this beast together 😉

  12. Barb Blouw
    Barb Blouw says:

    i’m a believer in Jesus Christ and He is the strength I use … . MS… I have had this ;attached to my nerves for about 40 years I say that MS stands for MIXED SIGNALS. brain sends a correct message-the nerves are scarred and the message gets garbled. Vision, legs, fatigue, organizing life is only a ‘day by day thing’

  13. Aileen Brown
    Aileen Brown says:

    I also have PPMS and when diagnosed 3 years ago the lovely neurologist said we don’t have crystal balls you could be in a wheel chair in 2 or no worse in 20 well I am worse but still walking and try every day to be thankful for that and Penelope you have been a big part in my attitude thanks, love and hugs

    • Jo Ann Maxwell
      Jo Ann Maxwell says:

      I love the way you turn negative into positive. I refuse to let MS get me down in the dumps. Thank you for your posts

  14. Susie Jones
    Susie Jones says:

    I have progressive MS and I’m paralyzed from the waist down. I have a foley Cath and obviously can’t walk. I do my best to stay positive but it’s getting harder as no treatment seams to help. I definitely hear what you’re saying! I hope to get back to somewhat a happier place as you have.

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