Never Give Up

Write an executive order to fund new treatments.

“Never, never, never give up.” ~ Winston Churchill

I guess my anger for MS comes in waves. Unfortunately, for my family and friends, right now it’s a tidal wave. Some days I just want to smash something. And other times I don’t feel anything at all.

I wish I could spread my wings and fly but MS has this weird influence over me. It keeps tugging at my sleeve. Holding me back. Reminding me of what I can’t do. So much so that I get stuck and I don’t know how to move on. To often I find myself fighting through tears. Spending all day trying to find my way.

Sometimes I sit on my bed and look towards the sky. I silently scream for help, while my head hangs in a noose no one can see. Wishing someone would write an executive order to fund new treatments. Being overwhelmed by stretches of sadness that appear with every exacerbation.

For comfort I read blogs about miracle diets and remedies that fuel my fantasies of living MS free. While a spooky force of new symptoms blows down my straw house of confidence built by my trust in the newest $100,000 medication.

At times I don’t talk because the static in my head is so loud. It’s like the lesions are screaming at me. They always zap my energy. Paralyzing my cognitive skills. Impairing my abilities to successfully communicate ideas. Causing my words to keep tripping over my thoughts. Not allowing me to verbalize my answers. So I say nothing.

This lack of expression leads some people to say I’ve given up. Some call it depression. And others tell me I’ve changed. And I know it may appear that way from the outside but I don’t think it is true. I spend thousands of dollars I don’t have, trying to improve my quality of life. Buying medicine. Seeing doctors. Going to therapy. I do all of this in an effort to live a happy life. Would a person who has given up do that?

I see MS as something that could crumble empires. So forgive me if I can’t always keep it together. But I will always try. My life story may not have turned out like I thought. But I’m still here. And I will never give up.

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.

17 thoughts on “Never Give Up”

  1. I read this when you first published it. Now a few months later, I come back to it. I can’t tell you how important your words are. I have struggled lately…I think all kinds of things throughout the day but for whatever reason the words don’t necessarily come out. It looks like I am aloof, don’t care, or not interested. I know that I have to be more self-aware that I need to speak more and engage more. Your words are such a reflection of how I have felt lately.
    You and your words are appreciated.

  2. Wow. Thank you for putting into words what I struggle to on a daily basis. I’m tired of being tired. I’m tired of trying desperately to communicate. I’m tired of pouring hope into non-traditional treatment and techniques. Your strength is a beacon of hope for me today.

  3. Nicole, you are a beacon to those who suffer with MS. When you don’t have static in your head, your cognitive abilities and your talent with communicating your feelings are truly exceptional. I can’t thank you enough for sharing your thoughts. There is so much isolation with MS . I would never have understood what MS means until I had it myself. And I can’t really understand what other people with Ms feel because the symptoms are so different. And the bright smile I see whenever I meet up with you hides the desperation that we all feel from this disease.
    I have moved into the secondary progressive stage. My faith in God is my greatest support. I try to rely on the sayings: What does God want me to learn from this? and Our job is to deal with whatever God sends us. The moments I can live up to these are very comforting. But there is always desperation waiting to jump in.
    I try to count my blessings, especially when I see a child who has had disability since birth. I had 59 years of fast forward and stop for which I am very grateful. On my good days, I can even reflect on the benefits of having to slow down. So I guess that makes MS only 95% bad.
    I am also blessed with a husband who supports me tremendously. I can’t imagine what it’s like for him to see my condition and know there is little he can do to change it.
    I will continue to look forward to your blogs for the insights you provide and the motivation to never give up. I am grateful for your efforts to produce your writings. God bless.

  4. You summed up MS beautifully. I was taken back with the line “And other times I don’t feel anything at all”. Among all of symptoms we go through I think this one is the most difficult to explain.

  5. Your words brought tears of recognition as I recognised what MS does to our lives, and also the strength that it seems to have given you. Many thanks for sharing and making me feel better.

  6. I cry every day but take many supplements and go to PT once a week which gives me a little hope. I have lots family and friends due to mobility limitations or maybe cause it is just too much trouble to deal with.

  7. I am preparing to go into a nursing home for a ”respite’ stay while my husband travels for supposedly 1-2 months. I worry that they just won’t “get it” when they see me coming. All the other ‘normal’old people who can walk and amble around normally Will just feel sorry for me. What they probably won’t get it is that I am normal on the inside!! That’s what scares me the most! Thank you for your encouraging words, Nicole! Ann

  8. Your words are so true. Usually I’m able to accept my deteriorating condition (PPMS), but at times like last week, when I was admitted to the ER with a temperature of 104! !! And couldn’t move a single muscle in my body, its hard to imagine a real life in the future. It turned out to be a UTI and a kidney infection and perhaps a blood infection aand is getting better, but I’ve been in the hospital for seven days and counting. Never give up!

  9. I know exactly how you feel. My MS is different than yours, yet it has been unyielding as of late as well. Along with some other “goodies” presented to me to make me feel even worse. So, in the end, we have to remember to never give up. Life is too precious and our loved ones love us. Thanks for this post, Nicole. I hear you.

  10. through tears and heartache I unite myself with you Nicole – as we struggle to remain strong and sane through the challenges faced. NEVER give up is the cry and prayer of a Warrior! Peace today & Always, chris

  11. Hi Nicole, So glad to hear you say that you will never give up! I know some days are better than others and some days we have a bit more fight in us. When asked how I’m feeling, some days my reply is “like a roller coaster” and I think to myself how much I want to get on a different ride. You are truly an inspiration to many. Thank you for always sharing your honesty. Wishing you and all of us MS” ers a great day and better tomorrows.

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