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Sometimes I Wish it Wasn’t Me

Sometimes I Wish It Wasn’t Me

I’m just going to be honest for a second. As much as I want to say that MS doesn’t have me, I have to admit that my MS has a huge part in making me who I am today. And, in all honesty I have become really proud of that person over the years. That person is positive and lives each day to the fullest. She is happy, strong and ready to face each day with a happy heart. But, that person struggles a lot too, and, some days I just really wish it wasn’t me. I wish that I wouldn’t have been the one to have to deal with this for over half of my lifetime. I wish I wouldn’t have been diagnosed so young, because I know that’s a lot of the reason why I made some bad decisions along the way.  I wish it wasn’t me with the debilitating fatigue. I wish it wasn’t me with the crazy mood swings and emotional issues.  I wish it wasn’t me having to take the medication and deal with medical bills and health insurance. I wish I wasn’t the one wondering why although no one else in my family has this disease (it is not hereditary, but several genes are believed to play a role in MS) I’m the one who got it. I wish I didn’t have to deal with the daily symptoms and worry about my disease progressing. I wish my husband, family and friends didn’t have to deal with MS and its unpredictability as well. I wish they didn’t have to worry about me. And, most of all I wish I didn’t have the constant fear in the back of my mind that I might pass it on to my son and possible future children.

Frustration and anger

I found myself tearing up with frustration and anger writing all of those things down. I take pride in the fact that I am a strong woman and I am in love with the life I have been given, but I often don’t admit the things I wish my life wasn’t. I strive to be positive and not let my MS issues and struggles take over my life, especially the negative aspects of it. But, if I’m honest with myself and with you as my readers, there are days where they can’t help but take over. Life is hard, and sometimes life with MS makes things even harder. I have to admit to myself often that I’m only human and it is ok to have my weak moments. It’s ok for me to be upset and sad at the cards life has dealt me. My fatigue is my number one struggle, and there a lot of days where it gets to me. It at times can leave me feeling frustrated because sometimes I have to sit down and deal with it instead of doing everything else I want and need to do. It’s this kind of unexplainable fatigue that makes me feel most weak and vulnerable. And, it above most things makes me wish it wasn’t me.

You’re not alone

I want to open this discussion up with you now. I want to thank you for taking the time to read my sappy article about the anger, bitterness and just overwhelming sadness that MS can sometimes bring up in my life. And I hope that you will feel comfortable sharing your MS stories with me. Feel free to use this as a time to vent your struggles and frustrations. I know that we all have them, and sometimes it’s more comforting than anything to know there is someone out there that truly understands. I’m thankful for each and every one of you, and I want you to know that reading your comments (whether they be trials or triumphs) can give us all the reassurance we need that someone else gets it, and someone else shares the struggles we don’t always like to admit we all deal with.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Dyann
    2 years ago

    Thank you for this. Truly!

  • Carlita Coley
    2 years ago

    I can so relate. I use humor a lot. Sometimes you have to laugh to keep from crying.

  • Meagan Heidelberg moderator
    2 years ago

    Thank you for sharing, Carlita! You’re so right!
    Meagan, MultipleSclerosis.net Team Member

  • Michraf
    2 years ago

    I am a teachers asst. for a middle school LLD class. My cognition gets in the way everytime. So does the fatigue (not sure if it’s math or the stress from the kids!). My husband does pretty much everything. When my kids are home they do a lot too. I too resent MS and what it has taken from me. I seem just to go through life and not truly enjoy it. It just really makes me sad and angry that I’m stuck with this, Wouldn’t wish it on anyone else, but why me? Thank you for this.

  • DonnaFA moderator
    2 years ago

    Hi Michael, I’m glad that the article resonated with you. Grief is absolutely natural. It’s wonderful that your husfand and children are supportive, that is a prize.

    As a math-impaired mom of two kids on the spectrum, I can pretty much affirm that it is both the math and the kids 😀 Thanks for being part of the community! -Warmly, Donna (MultipleSclerosis.net team)

  • qvh5op
    2 years ago

    As I read your article I couldn’t help but think ” oh she is so lucky she knew what was going on with her body”
    I wasn’t diagnosed until I was 61, they told me I had had MS for 30 to 40 years. I was relieved to have an answer to all of the strange things that I had been dealing with for so many years.
    That being said I have to admit that I am not sure that I would have been able to deal with the diagnosis any sooner than I got it.
    Thank you so much for sharing your story, I truly apprieciate it.

  • chalknpens
    2 years ago

    I’m another teacher who had to retire earlier than planned because of MS and its cognitive impairment … who wants a teacher who can’t remember her students’ names, or even recognize her students in the corridor between classes? Thirty years, and I thought it would be much longer … I thought that was the worst … I know better now. I lost my best friend/husband/partner of fifty years \this past winter to a sudden, unexpected death. I know life is not fair. I thought I would go first. Life is harder day by day.

  • DonnaFA moderator
    2 years ago

    Hi chalknpens, I’m sending hugs. I’m so sorry for your loss. Please know that you’re not alone. We’re happy to be part of your tribe and will always be here when he room seems a little too big. Have a gentle night. -Warmest wishes, Donna (MultipleSclerosis.net team)

  • bandi
    2 years ago

    The fatigue is awful! I feel like a drain on my family. This wasn’t what I planned for in any shape or form. I wanted to go back to work after my kids went to school. But my cognitive ability has declined so much I have retention issues. My medical bills are a Huge drain on my family. I to used to say “I have MS but MS doesn’t have Me.” But now days I’m so sure about that. Between doctors appts, MRI’s, medicine and all the $$ it takes the wind out of your sales.

  • Kdcase
    2 years ago

    You summed up the fatigue and emotional issues so well! My fatigue has been excessively extreme this week. I get so frustrated. Thank you for sharing.

  • Spratt
    2 years ago

    The fatigue is the most frustrating for me as well. It usually only comes after I spend too much energy previously, like visiting with my grandchildren who live in another state. I just returned from a trip visiting nine of them for over a week. I have barely made it out of bed since. But it was worth it! I often say MS was God’s way of slowing me down. Boy howdy!

  • Juleigh
    2 years ago

    In November, I resigned from my teaching career b/c of MS. Yesterday, I had settlement on my two-story colonial family home b/c of MS. This isn’t just my disease, this is my entire family’s disease. I felt bad for my 3 kids yesterday saying goodbye to their family home. They understand that I must have a first floor bedroom. They also understand that life isn’t fair. I have many symptoms of MS, but the fatigue is crippling! It kicks my butt every day. I really don’t feel sorry for myself, but I do feel bad for my hubby and kids.

  • potter
    2 years ago

    I use to say why me when I look at other people who did drugs, drank and partied all the time and seem healthy. But recently one of my sisters was diagnosed with ALS and she was one of those people that did drugs. Her diagnoses didn’t make me feel vindicated just sad. We have horrible genetics in our family, I had two aunts that had MS and twelve relatives die of ALS including my mother. My neuro told me I was lucky when I was diagnosed with MS instead of ALS, didn’t feel lucky at the time. I guess I do now my sister will probably only last another year. Potter

  • Julie
    2 years ago

    I am pretty sure there isn’t an MS’er out there that doesn’t have a few of these thoughts at one time or another. I always cringe when I read “I may have MS but it doesn’t have me”. With all due respect, MS does have you. I can’t imagine a person with MS that hasn’t had to change at least one aspect of their life.

    I have a supportive family but I didn’t have a supportive husband. He left after 30 years of marriage because he “couldn’t deal with my MS”. Seriously, he said that. Where do I go to get rid of it because I can’t deal with it either? It was just one more thing that I had to figure out while being ill.

    10 years later I have it pretty much figured out even though I would rather wish it wasn’t me as well. It would be nice to have someone to go through this with but I have kids and a mom that are by my side at the drop of a hat. So I suppose the solution is to be grateful for what I do have and try not to think about what I have lost. Look forward, not back. Forward is the direction we are heading. So heads up and good health to us all.
    Julie

  • Spratt
    2 years ago

    Exactly!

  • Christina Hegarty PT, DPT moderator
    2 years ago

    Hi Julie,
    We really appreciate you taking the time to share with us! I’m sorry about the MS road you’ve had to travel, but I’m glad to hear your positive attitude and that you have a supportive mother and children. Please don’t ever hesitate to reach out to us for anything: to vent, for support and understanding, info, etc. We are here for you!
    Warmly,
    Christina, MultipleSclerosis.net Team

  • jennyb
    2 years ago

    I feel much the same way. I haven’t had MS for nearly as long as you, but I already have had to deal with more than a few other issues, Hodgins Lymphoma, Menier’s Disease, psoriatic arthritis, 3 broken bones in my ankle, and osteoporosis. My MS is under control, but I have fatigue and cognitive problems, which bother me a lot. Thank you for writing what you did.

  • Christina Hegarty PT, DPT moderator
    2 years ago

    Hi Jenny,
    I’m sorry to hear of all you have to deal with. Thank you so much for sharing with us here. I’m glad you found this article relatable!
    Wishing you the best,
    Christina, MultipleSclerosis.net Team

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