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Still Hoping

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I sleep 10 hours but still wake up tired.
I take my medicine but still I am sick.
I say my prayers but still they are not answered.

I cry every night but still feel the pain.
I donate money but still no cure.
I plan ahead but still afraid of my future.

I listened to you speak but still don’t understand.
I take notes but still can’t remember.
I hide symptoms but still people notice them.

I changed my diet but still progressed.
I go to the park but still can’t run.
I drank very little but still need a restroom.

I hold on tight but still drop things.
I talk slow but still slur words.
I always smile but still envy you.

I have MS but still … I have hope for a cure.

44 thoughts on “Still Hoping”
  1. Joanne 24 July, 2013 on 6:54 AM Reply

    “I say my prayers but still they are not answered.”

    Maybe they were answered but you did not see it? We pray to God to find HIS will, not ours. Like Christ in the garden: If it’s possible, let this cup fall from me. Nevertheless, not my will but thine be done.

    If it’s possible, let this [MS cup] fall from me. Nevertheless, not my will but thine be done.

    We must “just be” as my pastor likes to remind me. We are where we are. All we can do is our best. Make the most of each day and praise the Lord for it. Fighting or kicking against it only makes things worse. [I’m speaking to myself here too]

    God bless you.
    Love, j

    • Nicole Lemelle 24 July, 2013 on 2:15 PM Reply

      Victoria, thanks for your comment. I needed that one too!

  2. Ivana 6 July, 2013 on 1:18 PM Reply

    Hello, I live in AZ and have been attending Film School. Now I took manner in my own hands and I am indie producing a feature length artistic documentary about MS from the patient’s point of view to raise awareness. I thought I was done with the interviewing part of the documentary, but hearing the stories of how it began and how an individual copes with it in his/her own unique way, I am still open to taking interviews. Check out the blog and the FB page. thank you kindly
    feel free to message me on the FB page.

    http://katzmedia.blogspot.com/2013/07/i-feel-orange-today-part-ii.html

    https://www.facebook.com/MS.artistic.film.documentary?fref=ts

  3. Lisa Snead 30 June, 2013 on 5:05 PM Reply

    Nicole, Dawn, Laura, Tammy-I know there are more, just can’t remember all the names. I so wish we were near one another, it seems we all share the same frustrations! I was diagnosed in March 1997, I can still walk but have major spasticity in both legs and am fighting against using anything to assist. I am 42, have 2 boys 6 and 12 and I am not ready to accept that I won’t be walking for each of their graduations! I have been on disability since 2001 due to a large brain lesion that affects my cognition to the extent that I can’t focus well enough to do my medical business office manager job. I really appreciate this blog!! :) if anyone here would like to connect with me on FB I am Lisa Michelle Snead. Nicole, keep up the inspiration, I appreciate all you share through your writing!

    • Nicole Lemelle 2 July, 2013 on 11:35 AM Reply

      Lisa, I so wish that we were near each other as well. The isolation and loneliness continues to pound away as well. I will look you up on Facebook. until then!

  4. Laurie H. 30 June, 2013 on 11:37 AM Reply

    This one made me cry. The part that really got me? “I always smile but still envy you.” I am a good person. I know how wrong it is to envy. But in my deepest heart, I envy anyone who can walk. There. I said it.

    • Nicole Lemelle 30 June, 2013 on 11:48 AM Reply

      Laurie, We would be dangerous together!

    • LIZ PAULISSEN 30 July, 2013 on 2:22 PM Reply

      My sentiments-exactly. Thank you for saying what I couldn’t.

  5. KIM M 27 June, 2013 on 4:53 AM Reply

    Spot on Nicole. Perfect. What is left for me to say?

  6. Dawn Carter 26 June, 2013 on 1:47 AM Reply

    Wonderful story. I am jealous of the non-MSer’s. I’ve been looking for an outlet like this. I was diagnosed 12 years ago, and stopped working on 2006, and because of severe numbness and tingling in my feet I do not feel secure in driving.
    Not to sound bitter, or angry, but I’m having a hard time dealing with my life. I’ve always worked, or went to school, and right now im not doing either. I’m not sure what to do, any suggestions.

    • Nicole Lemelle 26 June, 2013 on 5:36 PM Reply

      Dawn, Yes. Call me.

    • Linda La Rowe 28 June, 2013 on 8:48 AM Reply

      I used to go on walks with my husband. That is not possible now. He now hikes with our neighbor. Well, he needs to lose 50 pounds so I’m pleased he is going…and my weight is just right. I miss being able to do what I wanted. I think when I look back, I used to focus on what I could do…and the episodes of MS faded away. That was when I was in the relapsing remitting/stage. Are you experiencing an episode with the numbness? Or are you in secondary progressive?

  7. Lainie 25 June, 2013 on 4:38 PM Reply

    This is beautiful – thank you for reminding me that I am not alone in this surreal, bizarre existence.

  8. Victoria Cunningham 25 June, 2013 on 4:19 PM Reply

    Well put, so glad I found your page
    No one can truly understand what we go through except other MSers!
    Ty for posting.

  9. Liset Angela 25 June, 2013 on 2:10 PM Reply

    What a lovely poem. You have said it all in such little space and time. I cannot tell you how perfectly on the mark you said that!!! Thanks for expressing how I feel.
    ~ Liset Angela

  10. Mike Bastian 25 June, 2013 on 2:05 PM Reply

    Wow, so true, it’s like you know me. Great job of writing for us.

    • Nicole Lemelle 26 June, 2013 on 1:45 PM Reply

      Mike, I was truly just sharing my reality. Unfortunately others live it too!

  11. Lindsay 25 June, 2013 on 2:04 PM Reply

    I hear and concur with all that you wrote – but still – there is hope. There is always hope. God answers all our prayers if you ask in His will. They may not be the answers WE desire, but they are the answers He knows is right for us. People have said to me, as I’m sure they have to you, “I don’t know how you do it.” We just do – right? I mean look at the alternative – nothing! Nothing is no good.So we trudge along this dusty, wild path – and make the most of what we have. At this moment I “legally blind” (since Sunday), have four young kiddos to raise…yet I can’t see their beautiful faces. I can’t drive. I can’t see their art they draw for me. I can’t even read to them. If I let myself I could easily crawl up in a hole and sit there. But life goes on. Hard days are well, just harder to do that, huh? I pray you have a better day tomorrow. Love your candidness.

    Hugs!
    Lindsay

  12. Lisa 25 June, 2013 on 1:00 PM Reply

    This one brought tears to my eyes! Even though i am having a decent day, I can so relate to this writing! The worst thing I have heard lately was from my husband, when I was explaing the other day how hard it is to just keep moving through the pain and he replied “everyone has a hard time making it through life” Have you ever wanted to scream, I KNOW LIFE IS HARD BUT TRY IT WITH BUNGEE CORDS ATTACHED FROM YOUR SHOULDERS TO YOUR FEET!!

    • Nicole Lemelle 25 June, 2013 on 2:02 PM Reply

      Lisa Call me next time! I know what it’s like.

  13. Marie Pizzella 25 June, 2013 on 12:24 PM Reply

    Love this, I can definitely relate!!!

  14. Bryan Hacke 25 June, 2013 on 12:16 PM Reply

    It is important that we hold out hope for a cure, even if practicality says that a true cure may be far far away. Since we don’t have the disposition of Mr Spock, we can hold on to our hope and pray for a miraculous break thru in research. Of course then we have to wait for the trials, the disposition of the FDA and so on…..I don’t mean to sound so negative but my ms has me going to a “new normal”. I will be the first to support a cure, but the existing problems will still be here and would still need to be dealt with. I have children, and hopefully their generation will not have this horrible disease to worry about. I would also hold out hop for a cure for all those other bad, deadly diseases. I am also starting treatment for prostrate cancer, hopefully my son will not have to deal with that. Let’s all hope for the cure, it may be our salvation.

  15. Arletha 25 June, 2013 on 8:53 AM Reply

    I always can read the sincerity in your words. You speak from the heart.

    Take good care, Nicole.

  16. Leigha 25 June, 2013 on 8:03 AM Reply

    WOW!!! Such simple words, but so much meaning and clarity!!! People look to you for inspiration. You are a beautiful representation of hope!!

    • Nicole Lemelle 25 June, 2013 on 11:51 AM Reply

      Leigha, Girl you can just call me! Okay maybe not 8:30 in the morning when you wrote this. Thanks though for putting up with me.

  17. Dee 25 June, 2013 on 7:06 AM Reply

    Really no other alternative but to pray and hope for a cure once you have all the issues that hinder your life!

  18. Sharlene Blundell 25 June, 2013 on 7:05 AM Reply

    Nicole, this is so right on target! I can so relate. Thanks.

  19. Laurie 25 June, 2013 on 5:10 AM Reply

    Wow! You again have put my feelings into beautiful words. This is a post I will definitely be sharing to try to help my friends understand what I live and feel every day. Thank you!

    • Nicole Lemelle 25 June, 2013 on 12:12 PM Reply

      Laurie, it’s good that you want to share with your friends. Because otherwise they truly would not know

  20. Tonia Hodgins 25 June, 2013 on 12:25 AM Reply

    BEAUTIFULLY said! After 18yrs of MS I know exactly how you feel!

  21. Elaine McGowens 24 June, 2013 on 11:14 PM Reply

    That’s beautiful Nicole. I know the feeling. Keep on blogging, I love your posts. I look forward to Tuesday’s because I know you will be posting a new one. God Bless.

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