A life with multiple sclerosis isn’t as easy as some people think

One of the hardest things about living with multiple sclerosis is the pressure from some people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in my life, but for some unknown reason I choose not to use it.

When I am unable to join in on the outings, parties, dinners and trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.

The best thing anyone could ever do for someone living with MS is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave those choices up to me and are okay with what I choose. After all, it’s my body, it’s my life. I should know how I’m feeling.

Sometimes I do need that tough love push…but most of the time I don’t. I push myself harder than anyone else could anyway. Most of the time I need someone to tell me it’s okay to stop pushing so hard, to give myself a break and simply be.

Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.

Living with MS can be extremely lonely and amazingly enough it’s possible to feel that way sitting in a room all by yourself as well as in a room full of people. Sometimes you just want someone to sit by your side and simply be there, to give you a hug, to listen, to care. No agenda…just be there.

When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. Sending you a virtual hug…from me to you today.

MS Gets on My NervesMS WarriorMS Superhero

 

31 replies
  1. Lynn Kendall
    Lynn Kendall says:

    You are an amazing writer and your writing is a gift to all of us. Thank you.

    With your permission I’d like to add a link to them on my website.

    Reply
  2. Laura
    Laura says:

    “No one should ever have to spend time defending how they feel.” THIS!!! Exactly how I feel, but unfortunately I seem to end up doing it all the time. Uggg

    Reply
  3. Peggy Wills
    Peggy Wills says:

    Yes i know.the only problem woth them looking it up online is they get the wrong message! And the drug companies are not helping. The advertising makes it look like its cure. My own family are usually understanding but the latest drugs will help me.

    Reply
  4. Dawn
    Dawn says:

    Thank you so much Penelope. You always say what I’m feeling but just can’t seem to get out. One of the high points of my day is reading your posts. You make me smile and find the joy in every day. 🤗❤️🌺🌺🌺(hibiscus from my flower bed. It’s blooming today.)

    Reply
  5. Darlene
    Darlene says:

    It drives me crazy…..been playing pac man for awhile now and not getting any better at it at all. It’s bad enough that I notice it and ur friend makes a stupid comment about it. Duh ! I just say my brain is on vacation today

    Reply
      • Louise
        Louise says:

        Hi Penelope, In 2017 I published Part One of my book, which is a memoir about my journey battling MS. In one of my chapters, I describe the feeling of being a pac dot as Pac Man’s greedy appetite continuously chomps away at my myelin sheath. Funny how like Darlene, so many of us MSers come up with similar anologies on what the disease feels like to us. Thank you for your posts.

  6. Lori
    Lori says:

    Thanks for the hug!! Venting!!
    I’m stuck in a rut!! In the last 2 years I’ve gained 80 pounds. I’m tired all the time with MS, but now with the extra weight I’m also ashamed. I may go out 2-3 times a month.

    Reply
  7. Dragana
    Dragana says:

    Thanks Penelope🙋🏻‍♀️ It’s been a long ride …. got used to it🙄.

    Today I am making a commitment to do at least one thing which fills me with joy 🥰☀️🌻
    Just thinking about it makes my heart smile!

    And happy birthday Jen 🌹!

    Reply
  8. KT
    KT says:

    Hugs to you too!!! It’s so true, people often don’t even care to try to understand. I wish there was more awareness to general public like there is with Cancer.

    Reply
  9. madeline newton
    madeline newton says:

    yes it is hard for others to understand this thing they all call MS..it is so weird to try to explain to someone just ask them to look it up on the internet and they will find out what you are going thru…everyday can be so different from the day before or what is coming up the next….if they are true friends they would look it up and try to understand what you are going thru day to day ….just do what you feel you can do and if you can’t find maybe another way to do it ….you can only do what your body allows you to do….lots of rest and happiness ..laugh at it if you can it works for me…i play as much as i can love to go to the beach ..we have toys to ride in it …find life happiness for you love your self…take care and be good to yourself for this is what you can do for yourself …love yourself first and for most….talk to others that have it and they can help so much for they are in the same situation…there are lots of web sites to help….take care and stay happy don’t let others get you down that isn’t healthy for you actually anyone ….

    Reply
    • Sonya
      Sonya says:

      I was informed recently by a doctor that I did not have an ear infection. I was shocked when he told me that my sudden onset hearing loss was caused by My Multiple Sclerosis! I don’t know why I was shocked, it has taken my vision before. He then said that MS is the most complex, complicated and frustrating disease known to date for patients and physicians. I appreciate his honesty.

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

    Thanks Penelope there are a lot of stupid and uncaring people out there that don’t know what a chronic disease does to people. They need education and to understand a little of this mess. And it depends on us to tell them when it is available.

    Reply
  11. Tan
    Tan says:

    Thanks for hitting the nail on the head. Today is a “stay in bed rest day for me”. I use to feel guilty about doing this but now I dont care. Loved the article. Recharging is very important.

    Reply
  12. Edessa Nano
    Edessa Nano says:

    Thanks Penelope for always thinking and feeling exactly like me🤗
    Love reading all your comments . It make me not feel so alone with this battle😊

    Reply
  13. Jan
    Jan says:

    Today is my 68 birthday. I’m going to just sit, do nothing and have a cup of tea. That’s all I want to. And I’m sending you a hug, dear Penelope, for knowing exactly how we all feel. 🙋🏻❤️ Jan

    Reply

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