I may not be as strong as you think I am

Hi, my name is Penelope and I have Multiple Sclerosis. (I feel like everyone in unison should say “Hello Penelope” like in those support groups.)

I am a real voice of a person living with a chronic illness. I can be a bit rough around the edges, creative, funny, and slightly opinionated. Sometimes people make the mistake of thinking that since I am so open about the difficulties and struggles I face, that I’m a super tough, amazingly strong person. Somehow they assume that the problems they are facing, I never face. That nothing gets through this armor I wear.

But it does.

I get tired and at times can become overwhelmed with all the challenges that MS causes in my life. There are moments when the thoughts swirling around in my head are all screaming at me in unison to quit. There are times when it takes everything I’ve got just to drag myself out of bed, open the curtains and welcome a new day.

I have moments of doubt that I really matter especially when my body is weak and I am struggling with the simplest of tasks. Things like holding a cup of coffee, washing my hair or tying my shoes.

When it takes every ounce of strength I can muster up just to take another step, it’s at those times that I find myself clinging on to hope. For me, hope is what gives me the strength I need to keep going when all I have left are tears.

Hope that my voice about life with MS will be enough to make someone stop for a moment and realize that what they are going through is real and not just all in their head.

Hope that the things I write will be a right-on-time read for someone needing a little bit of encouragement, support and a gentle hug.

Hope that lives will be changed through the things I say and the laughs I give.

Hope that people will begin speaking more freely about what life is like for someone living with MS.

Hope that those without MS will gain a deeper understanding about the challenges we face.

Hope that tomorrow with be better than today.

I’m here to say that MS is real and so is the struggle we live through. It can break even the strongest of the strong. Sure, we get pretty good at slapping on a smile to cover up the emotional and physical pain, but that doesn’t change the fact that MS hurts. It really hurts.

The important thing is to not let the pain or the daily troubles you are experiencing become so big that MS is all you are able to see. Pause and look around you. There is a world to be explored and people to meet. There is a life to be lived…and you are the one to live it. Strap on your armor, hold your head high, take a deep breath and step out.

I may not be as strong as you think I am, but I know I’m not alone. There’s an entire army of us brave and courageous MSers who never quit as we face the impossible each day. Together we are standing strong. Together we are doing it one hope at a time!

MS Gets on My NervesMS WarriorMS Superhero  


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.

92 replies
  1. Sarah Warnock Winkler says:

    Hello! Love your humour. I too have been living with MS…for 22 years…wow that’s a long time, now I feel old and need a nap. Keep trucking and finding the humor in each day. Your posts spread joy!

  2. Stavroula Stella Poulellis says:

    Hi Penelope , thankyou for your sharing of ms , I have ms since 18yrs old now 37yrs old , not a day goes by Im in pain but I still keep going my goal was to always work , I have my days every day but I know soon I won’t be able to work but if we all try to find something to make us happy we get by xxx

  3. Marianne Wallace says:

    Thanks for sharing this Penelope ! You’ll never know how much I needed to read this today ! Was nearly giving up …
    You’re an inspiration ! Wish that I had your strength x

  4. Gena
    Gena says:

    Thanks Penelope, your words are exactly what I needed to hear. It’s a lonely world out there when no one understands the effects MS has on you. I’ve been told by my boss that I need to keep a smile on my face, even if I’m in pain because she doesn’t want me to upset my co-workers. I hate this new life I have to live and often cry for the life I once knew. Thank you for making us feel like we’re not alone

  5. Deborah Mills
    Deborah Mills says:

    Penelope
    I love your posts
    I start my day with a smile because of you
    you have been a gift from God and will always be cherished
    Thank you for being you.💞

  6. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Hello Penelope and greetings from a damp day in Christchurch, New Zealand.
    We went to our doctor today and after talking to her she agreed it was good for me to go to the gym and get some fitness training. Quite scary as I have never (even in my ‘good days’) to a gym so I don’t know what to expect. I go tomorrow which is thursday for us so I’ll let you all know the next post.
    I find it’s amazing what I can still do even with MS and mobility problems. I can still show myself, I prepare breakfast for us in the morning and several other things that I should not be able to do.
    So in all I am still alive even if I don’t get out much.

  7. Penelope Miller says:

    I think it needs to be renamed to describe it better. Destruction of the mind, body, soul, spirit and it has a very nasty bite to it overtime. One day this thing won’t exist, I pray nobody has to be told they have it. <3

  8. Tracey Ellis says:

    Hiya penelope, had ms over 20 years now spms, words escape me most days but it only been past 6 years it’s finally taken over. I refused to give up fought as long as possible. Then bang took my humour, life,legs words memory, laughter
    .why why why live on ridiculously amounts of medication. Want to wake up normal again xxxii

  9. Ethel Himel says:

    Hello Penelope, I have RRMS, I’m on copaxone 40 mg 3 X a week. Scheduled for blood work and then 3 MRI s. It’s so hard to get thro a day. And I have trouble with b12, iron and D and now folate deficiency on medicine for all them. Some time I wonder what is the use why keep fighting and taking all the medicine and painful shots.

  10. Greg
    Greg says:

    Hi Penelope, I appreciate what you do? And as you knew every one with MS has it “differently”. Some have more strength and mobility than others. Some have more fatigue depression melancholy. Others, you wouldn’t know they have any problems at all, and go to work, live their lives and function very well, but perhaps wondering when will I get “the episode”? Some may never get it. Some are on very toxic drugs and others, like me, nothing. I’ve changed, my mind, my diet, and my attitude. I ride a recumbent trike and have gotten (most) of my mobility…back. I can go out, around the block, or for miles (weather permitting) as far as I want. And I’ve helped dozens of others do better with a trike. I’m constantly looking to find better options for myself and have recently started yoga. It’s great! Many local libraries and MS support groups offer yoga programs for free or a nominal fee. If you haven’t already tried it please consider a recumbent trike. If you can sit or stand and walk even a little with a cane or walker, you can probably use a trike. Because of multiple gearing they can move with little effort. Good luck!

    http://www.yourtrikespirit.com

  11. Lynda Cox says:

    Hi Penelope
    My name is Lynda and I have PPMS diagnosed 20 years now. It is effecting me more as the years have gone on but I always try and think on the bright side but it us hard sometimes when you are not feeling at you best.

  12. Glenys Jackson says:

    Hello, Penelope. I have PPMS and I know how hard it can be when you’re struggling to do normal things and your body keeps telling you it’s too hard – but you have to keep going anyway! There’s a song I heard as a child called ‘Funiculi, funicular’ which is about laughing than crying – and that’s become a theme song in my mind. I’d rather laugh at my body than cry – though I don’t always manage. There are many more out there who love what you’re doing, so be encouraged. God bless you.

  13. Gail M. Ferguson says:

    I often believe I get more credit than I deserve and on other days I feel like a guilty slug! We all just do the best we can and dance the best dance we can! Graciously accepting the compliments and kudos all the while allowing ourselves to crash when we need to! My name is Gail.

  14. Liz Gordon says:

    Hello Penelope, my name is Liz. What you do is remind us that even with our battles, minor accomplishments become gigantic. So then on our ‘good’ days, we can poke fun at at the struggles.
    Don’t you dare give up

  15. Juana Driver says:

    Good morning Penelope! I to have MS. 34 yrs this month. I too have good days and not so good days. I try to keep going strong but this last year I’m slowing down. My head still dreams and my body hugs my recliner lol. I’m so thankful for finding your posts and positive attitude even on stormy days.

  16. Grainne Kelly says:

    I often say “Hello my name is Grainne and I’m not an alcoholic! But I do have MS. It breaks the ice and I take it from there.
    Hello Penelope. I love you’re posts. It makes me feel I’m not alone. Thank you

  17. Sandy Jones says:

    I have RRMS with some residual sensation loss and difficulty walking at times. You have inspired me to keep moving and stop blaming MS for every little thing. I know I have previously imposed limits upon myself out of grouchy self-pity. No more! My new mantra has been “sure, I’ll try that.” If I fail or fall at least I tried, and I can move forward from there with good humor. Thank you for that Penelope.

  18. Tamyra Fay says:

    I’m going through the worst exasperation I have had to deal with since being diagnosed in 2000. It won’t let go! I don’t talk about it, don’t let my support know and try to look and act “normal”. My feeling on it is, if you don’t know me well enough to know something is wrong, you don’t need to know.

  19. Nicole A Ienco-Pulver says:

    Penelope you are incredibly strong, you an millions like us carry this an live with this disease everyday!! We don’t get breaks an were still required to live fully an work fully As if nothing is wrong with us!! Life doesn’t stop because were sick, an to be able to carry all the burdens of everyday life an still function at 3. Billion percent is in itself a miracle! That makes us great!! I guess that’s my bright light at the end of a dark tunnel lol.

  20. Della Smalley says:

    Hello Penelope I’m a MS fighter for 10yrs. n I have to agree with you on this we have to be strong because MS isn’t a good thing to have.Thank you for your Beautiful Posts

  21. Monica Schamberger says:

    Hello Penelope, I’m Monica. True story you have here. We struggle with some of th a same problems other people have, and a long list of symptoms and problems others don’t. If I wake up after 6:00am. I don’t go back to bed, if I do, I’m tried and cranky the rest of the day. If I just stay up, I have a fighting chance. Faith in God and chocolate helps too. Fight the good fight. Stay tough.

  22. Leah
    Leah says:

    Hi Penelope,
    Your blogs of encouragement are certainly not overlooked by me…and I realize that you too have your moments of despair, depression, fear, and pain like I do. Quite frankly, I am mesmerized by your determination to keep us afloat in times when you are suffering…and even then, you shine a bright light on me and on to many others. God Bless your spirit and devotion.😊

  23. Ron Wheeler says:

    Hello Penelope! I’ve had MS for 34 years. NEVER look back! Always look forward! Don’t allow yourself to wallow in self pity over all the things you used to be able to do. Celebrate the things you CAN do! ps: THANK YOU for your posts!

  24. Ami Kennedy says:

    Hello Penelope I have only been living with MS for just over year. I have 13 year old daughter and she keeps me fighting this disease. I love your post they are so helpful xx

  25. Margaret
    Margaret says:

    Hi Penelope. I am so pleased when I have completed my shower and got dressed (with help). My day always seems a bit better then. Hope this is one of the better days for you X

  26. John Lauth says:

    You know I see all these witty and intelligent posts. Thank you for those. I have trouble remembering people and places that I do not deal with on a regular basis. I do know that positive living with MS is one of my favorite parts of my day

  27. Amanda Griffiths says:

    Hello Penelope thank you for your posts. I think of myself as a tortoise , slow to move with a hard armour on the outside & a soft inside ☺️
    Stay strong lovely lady xxxxx

  28. Kathy Buys says:

    Great share! I have no words to express my inner battles now. Not asking anyone to fix the problems (they can’t), I just find not everyone is out to help, it creates huge trust issues. And seriously, MS is enuff, please don’t add to the emotional stress….

  29. Suzanne Judy says:

    Hello Penelope! My name is Suzanne and I have MS too and I hate everything about it. I love your posts and you keep me going. Thank you so very much

    • Suzanne Manser says:

      Hello Penelope and hello Suzanne from another Suzanne here. P, you are wonderful, shining a light on MS, sharing struggles and giving so many of us a smile in the midst of darkness some days.

  30. Susie Jones says:

    I have progressive MS and have dealt with a lot of loss. Bladder and bowel control, the ability to walk and incredible pain. I deal with it and say well it is what it is with a smile pasted on my face. When no one is around, I don’t wear a fake smile and I do hate everything about this horrible disease!!!

  31. Clive Whiteside says:

    Thanks for sharing this article with us all Penelope it is something that many people will be able to relate to. It wil also let people see they are not alone in there experiences

  32. Leslie Beaver says:

    This dovetails nicely with a speech that I am working on for Toastmasters. Tentative title-“I’m doing OK. I think”. Because it is difficult to answer the question honestly and accurately. Do I think that I am doing well? Yes. Absolutely. Do others generally see me in an upbeat mood? Yes. But do I have those moments of grumpiness? Yes again. When my dog comes to me and looks up, as if saying “it’ll be all right Les. Don’t be upset”. And then I slow down, breath deeply, simmer down and proceed.

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