Crying For A Cure

MS always changes my plans.

“You only cry for help if you believe there is help to cry for.” ~ Wentworth Miller

The New Year has begun! Good news right? You would think so. But around these parts, things didn’t turn out so well. MS always has a way of changing my plans.

New Year’s Eve went great. I spent it safe and sound at home. The next day, after shopping and going to the movies, it happened. I started crying. It was so surprising. Well not totally, because crying is not new for me. But this spell came out of the blue. There was nothing bad going on. My husband didn’t know what to do. Or just didn’t understand what was happening. And I was no help, because I couldn’t even explain it.

It could have been worse. He could have been upset because I ruined our day. But he wasn’t. I guess it really matters who you have in your corner. He handled the situation very smoothly by calmly talking to me while I relentlessly apologized through my tears. I don’t know if the apology helped, but what else could I do?

I wish I could pin point what set me off. Maybe it was from seeing that television commercial where the lady with MS is living a fabulous life. She’s acting like having multiple sclerosis is no big deal and if you take that medicine everything will be ok. Watching that commercial really hurts, because odds are I will never be able to live like that.

Or maybe it was the time of year that made me cry. On New Years we all like to look back at the previous twelve months and reflect on the progress we have made. Unfortunately, my biggest progression has been my MS. So, for me, looking back reminds me of all the abilities I have lost.

It’s weird, but MS has this strange hold over me. I get stuck in my thoughts and I can’t figure out how to leave. Sometimes it gets so bad I just don’t know what to do. So I cry.

I just never thought it would get this hard. But here it is. The fatigue alone from every day living is overwhelming. If only I could unsee what I have seen. I have witnessed MS trying to destroy the lives of my friends and myself. And that makes me sad. It stirs up feelings that tend to overpower me. So when I start grieving for no reason, I think it’s really my heart crying for a cure.

Author: Nicole Lemelle

My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

28 thoughts on “Crying For A Cure”

  1. YES, WE ARE ALL CRYING FOR A CURE, YET, I SOMETIMES FIND IT DIFFICUT TO READ THESE POSTS. I’VE HAD MS SINCE 2001, I CAN’T WALK AT ALL (CONFINED TO A SCOOTER 24/7), DON’T WORK OR DRIVE, HAVE ZERO USE OF MY ENTIRE LEFT SIDE, AM HOME ALONE WHILE MY HUSBAND WORKS, OH, AND DID I MENTION HE TRAVELS QUITE A BIT (HE’S CURRENTLY IN GREECE FOR 2 WEEKS). I JUST DON’T GET THE DESPAIR & HOPELESSNESS CONSTANTLY ON HERE. I DON’T LIKE HAVING MS, I WISH I COULD DO 1000 MORE THINGS WITH MY TIME, BUT I CAN’T. IT IS WHAT IT IS & I MUST LEARN TO LIVE WITH IT, AND I HAVE. THERE ARE SO MANY MORE PEOPLE OUT IN THIS WORLD THAT HAVE IT WORSE THAN I DO I TRY TO KEEP THAT IN MIND DAILY. PLEASE TRY TO FOCUS ON THE GOOD THINGS IN LIFE..WE DO WAKE UP EACH MORNING!

  2. Hi Friend.
    Your openness and honesty about the reality of living with MS never ceases to amaze me. Tim doesn’t cry outwardly, but I can see it on his face and hear it in his tone when he’s having a bad day. As Christmas approached and everyone asked if we were ready for it, all I could say was that I was ready for the year to be over. I was ready to put it all behind us with hopes for a better year. I had a day where I, too, cried. It seemed to come out of the blue. I mourn the loss of the husband I once had. I mourn the father that my children once had. Yes, we rejoice in the husband and father we have, but it gets sad when MS changes your plans. We’re here with you. You’re not alone. You help us know that we are also not alone.

  3. Hello Nicole. My name is Curtis. I work for a drug manufacturer that makes MS drugs. I will not mention their name for obvious reasons. I came across your blog in my downtime just trying to learn as much as I can and learn I have. I am not a scientist or a researcher I work with insurance companies. I honestly did not know the difference between relapsing remitting MS and secondary progressive. Dont be alarmed as my duties don’t call for me to know that info. I am so touched and awe stricken by your story. I have spent this entire week reading your blog from the beginning until this last post. I kept wanting to write something but I figured I would have a greater chance at a reply by writing on your most recent post. You really put things in perspective. I have been dealing with some issues but not 1/10th of your plight. Nicole you just remember that God won’t put more on you than you can handle. He chose you for a reason. It’s not our fight, it’s his. So many of us would not have been strong enough to make it this far in your shoes but here you ate still standing, still blogging, and most important still living. Not in the physical form but the spiritual form. MS has not taken your spirit. I wish I could give you a hug right at this moment as tears stream down my face. I pray for you and your husband as God placed each of you in the others life for a reason. I am a lifelong fan now. Sorry for the extremely long post I am just so moved by your spirit. GOD BLESS YOU

  4. thank you for your honesty. i am very happy for you that you have someone to cry with. how many of us find ourselves crying alone? and i appreciate your take on that tv ad. you found exactly the words i’ve been looking for.

  5. Dear Nicole
    As all of us with MS know that no two people have the “same MS” I am grateful to you for sharing your MS and what is real for you. I’m not sure why but it does seem like the media, the ABC drug co’s and MS National Society portray MS as a cake walk. I have written to Cindi ? the president of the magazine a few times about this and I do see some more realistic articles being printed but it is clear that they rely heavily on drug company ads as income. I feel like we are almost being shamed for having the disease. Does anyone else deal that? I read an article about Teri Garr, used to be the spokesperson for MS, was replaced by Osborn because she was no longer able to walk, has gained weight, not cute or funny any more, she sometimes slurs her words etc… Heaven forbid the real side of MS be shown. I know that I am not as strong as you and so many others are. I don’t know how you do it.

  6. Nicole, it’s tough to laugh and cry and can’t stop. Me too. All those drug co. ads with the side effects so casually thrown in. “Oh by the way, you may die because of this medication.” So cavalier.

    I read every post you make and thank God you’re brave enough to speak the truth.

  7. You speak for me too. I hate saying it but I get so mad and sad at the same time seeing able bodied people with MS. I don’t look for this as the face of MS. I look for people like me like you that are not able bodied. Shouldn’t there be something more that describes US so they we are not all in the same category. And I am not referring to the SPMS stuff. We need something more than I have multiple sclerosis.

  8. Bottom line: this is really hard – more difficult than we ever imagined both physically and emotionally. I cry a lot.

  9. Once again Nicole you managed to put what is going on to type for that you are a ROCK STAR. Hugs and love from your fellow fighter in Cali. Thanks again for opening your window and letting us peak inside as we read. I hate that commercial I received so many well meaning calls from friends and fam even my husband for me to watch the commercial. I know many of us in the community sent emails to the company and I can recall a little of the response we received the company basically said well every MS case is different and some with MS Cando all those things. Also that commercial is clearly done on different days it doesn’t say she does all that in 1 day. Well I took it as we could care less what you think. Anyway thanks again girlfriend.

    1. Antoinette, I’m so happy you responded. I get the chance to tell you that not every day is like that. If you get this message give me a call whenever you can!
      Your friend down here in the boot.

  10. Oh Nichole – I wish all good things in the coming year. MS is hard, and reading your comments made me cry too. Nothing wrong with crying – you need to get those emotions moving or they will swallow you up.

  11. Nicole ,
    Those stupid ads with the pretend models who do not have MS! Sometimes a good cry is needed to console and comfort us. I wish you the best.
    God Bless You,
    Vivian

  12. hello Nicole!
    thank you for sharing your experiences.
    I just saw this ad for something called PBA which may affect people with MS

    http://www.ispot.tv/ad/7XH_/pba-facts-learn-more-featuring-danny-glover

    I have RR MS and also hate that carefree-ms-is-no-big-deal commercial. it reminds me of tampon commercials about how a woman needn’t stop her busy schedule of swimming, dancing etc WHILE WEARING WHITE!!

    I am giving you a virtual hug and if I were there I’d cry with you!

    happy new year
    Christine

    1. Christine raises a good point — crying can come from feelings of sadness (emotions) but often people with a variety of neurological diagnoses have crying that is out of proportion to how they are feeling at that moment.

      The dud coordination of mood (how you feel) and affect (how you outwardly display that feeling), is called pseudobulbar affect (PBA).

  13. I cry also. Now I will cry for both of us, or maybe I will cry a bit less because I know someone is also crying. All I can say to you and to myself is we are not alone.

    Keep writing, it helps me and I am grateful to you.

    Elizabeth

  14. My heart goes out to you! It’s hard to look back and let go, but at some point, I have come to “Well, I think I actually was done with that, anyway…” but such things can (can!) be easier if they happened on MY terms, not occasioned by this neurological nonsense.

    If these miracle “cures” actually cured, they wouldn’t need to be advertised. Ever see an ad for fire? Works better than a room-temperature rock to cook your food, but ain’t no reason to advertise it. Everyone knows about it. Well, mostly everyone. I regard such things like ads for upcoming football games. They got nothing to do with me, so why bother?

    Ever look back and marvel at the glorious days when the weather outside was absolutely perfect? Yes, of course, but that was then, this is now, and beating yourself over the change in the weather is just plain silly. All of us will eventually be called upon to look back at things that in their day were very precious to us, but the weather has changed. It was sure nice, wasn’t it? Sometimes it wasn’t… but the weather has changed, why beat ourselves?

    1. Robert, I pulled myself out of bed and decided to write you back! Everyday is not bad. I would hate to come across that way, I must be careful at what I write. Thanks for being such a devout reader. I’m happy I haven’t scared you off!

  15. Hi Nicole, Happy New Year. We are on to face the year ahead with the hopes of only good things to come our way. I’m so glad that you were able to get out. As for me, I had plans to get together with family and friends until I took a fall and injured my rib cage ouch! So much for that. So damn this disease they call MS. I wish you all the best. Here’s hoping (and wishing) that this year will be better for all of us who suffer with a chronic illness. Take care

  16. Hi Nicole,

    I’m so sorry for what you are going through. Unfortunately, I can say that I understand the seemingly random crying and inability to control it because it happens to my mom about every half hour, every single day. Just know that its okay to cry and you don’t need to apologize. But if it makes you feel better to apologize, then continue to do so.

    As far as finding a cure…my mom keeps hoping that stem cells will be the saving grace. There are tons of clinical trials being conducted all around the world (as I’m sure you are aware).

    This article made me feel hopeful: http://multiplesclerosisnewstoday.com/2015/02/16/stem-cells-used-to-treat-secondary-progressive-patients-in-clinical-trial/.

    Try to find more articles like it; I guarantee you will, because there is so much being done in the field of MS research!

    The only thing stronger than fear is hope….never lose it! <3

  17. Bless your heart! This post really hits home. I hope this year brings better things for you, for all of us. God know we need it. Thank you for sharing your blog. I am sorry that we have this in common.

  18. My heart hears your heart’s cries – know that they beat together and that you’re never alone through these challenging moments! Hugs!

  19. This really hitss home today. Perhaps because last night I finally spoke out loud my struggle of watching others live a “normal” life and I can’t do that anymore. Here’s to the amazing people that stand by us no matter the situation!

  20. I cry to for no reason. It’s the frustration we feel. I get angry too. Wondering, why can’t it just go away? I see those commercials too and the magazine ads and get annoyed as well. I try it all and nothing works for me like it does for others. Why can’t it just be easier?? I feel your pain and frustration and emotion! You are not alone. That’s why I love your blog.

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