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Finding A Purpose

“Our greatness lies not so much in being able to remake the world as being able to remake ourselves.” –Gandhi



In order to make a difference I’ve gotten more involved with my local chapter of the MS Society. We visit legislators to talk about bills that are important to people living with chronic illnesses. We also advocate so that the general person is aware of MS. I want everyone to know just how destructive it can be to not just the person living with the disease but also to his or her entire family.

So, that’s what I’m doing to “remake the world”. Now I just have to remake myself. I love the camaraderie of participating in the aforementioned process as it is helping me deal with some of my own personal issues, but I’ve got to be honest with you, some days are still really hard to tolerate. The times when I resent just about everyone are especially challenging for me. I close the door and shut them all out. But, that’s not who I am. You see these moments are ravishing but fleeting. In turn, I allow myself to truly feel the hurt. Then on my own time, I open my door and slowly usher the world back in.


For me, I find the more I accept the things that scare me the most, the better I am at handling them. For example, when I was able bodied I exercised my butt off. I ran, did the elliptical, and the Stairmaster. You name it. After my last exacerbation I was afraid to exercise because I was so weak. I finally talked myself into trying some less strenuous workouts. Now I can do modified versions of my original exercises but for much shorter periods. It’s a totally different routine than I’m accustomed to, but I do it and it makes me feel good. In keeping with confronting the things that scared me the most (i.e. not being able to exercise), I accepted it, adapted and made it work.

Wherever we are we can remake ourselves. Even if it’s only in the way we view ourselves. I’m sure you’ve heard perception is everything. I definitely see myself differently. Making it to the restroom in time or walking the full-length of a room are tasks I would have never considered difficult pre-diagnosis, but now I check them off as small victories in my daily battle for normalcy.

Sometimes it annoys me to think of what MS has taken from me. I try not to hold on to the anger that boils beneath my surface. I look at my situation as just one of those things I’ve been handed and can’t change. I believe that the universe gives you what you need not what you want. This concept facilitates my conviction that I’m here like this for a reason. I just can’t figure out what it is. I don’t often ask, “Why me?” as if I’m somehow better or some other person should have it. I know that’s certainly not the case. I realize the question I should embrace is, “Why not me?”

But despite how far I have come in my acceptance of this disease, I am still constantly asking myself, “OK I have multiple sclerosis. Now what am I suppose to do with it?”

 

 

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

  • wheels460
    6 years ago

    I may be out of the norm but MS has made me a better person, I have learned patience and acceptance little annoyance no longer bother me. Volunteering at rehab centers and hospitals has taught me my problems are minute compared to others.

  • Jen
    6 years ago

    I so get it and it`s normal fo all of us to feel this way. I will see people in the morning just walking or jogging and start cryin on my bad days cause I cant even get outta bed. I know MS had humbled me , I see things so different now, and most of all never take anything for granted But I so miss the good ole days before had this and could just get outta bed and go go go . Now I gotta wake up 3 hours before whatever I have to do and I am lucky if I even make it to whatever I have to do then. Unfot. a lot of guilt comes w/ MS. It hurts so bad when my husband or kids want to do stuff we had planned and I have to cancel the plans . I have explained to them that unfort. MS is hour to hour ya just never know when that fatigue or pain is gonna hit and knock ya on your butt, then ofcouse all the anger , sadness and pushing everyone away comes out. I just wish they would find a cure and let us all have our lives back.

  • Carrieb
    6 years ago

    Brought me to an emotional place, of course coming off 5 days of solumedrol will do that.
    I’m also as involved as I can be. I want to make some impact with my life and with MS.
    Get involved with helping someone, something, anything. It will keep your spirits up and maybe you’ll have fewer “MS sucks” days.
    One of my small goals is to smile at everyone I come in contact with. This small gesture can do amazing things.
    So as I try not to “roid rage” I will smile.

  • Wishteria Wishbubble
    6 years ago

    Dear Nicole and Christina,
    Your posts are filled with critically important points about acceptance, adaptation and learning how to live ‘with’ the challenges and limitations MS presents in our lives.

    You said, “Wherever we are we can remake ourselves. Even if it’s only in the way we view ourselves. I’m sure you’ve heard perception is everything. I definitely see myself differently”. This concept is one of the most powerful revelations that we can learn to embrace!

    Perception IS everything! Finding a purpose is an effective way to fight the depression and feels of loss that MS triggers.

    Yes, we might not be able to do some of the things that we used to do. But there are many more things that we CAN continue to do and enjoy. How? Well, by accepting that we might need to take three days to accomplish what we used to do in one. It helps to have realistic goals to focus on instead of feeling like the MS is destroying the “quality of life” that we once had. It helps to stay focused on all the things that we are capable of doing, achieving and having.

    Thank God that we live in a time when we now have speech recognition on our computers. Years ago, I thought I would never be able to write like I ‘used to’.. Today, I am excited that there is a software program that makes my husband’s optimism a reality.

    When I was paralyzed, I thought my life was over, but my husband patted my arm gently and said, “Sweetheart, as long as your able to speak, you will always be in business! And you know, he was right. I might need to do things differently than I did before, and that might take time to figure out, you know, it is true what they says, “If there is a will, there is always a way”!

    Learning to see yourself differently, embracing those various challenges as an opportunity to be creative in your approach and accepting that MS is only a detour, will help you see the glass is still there, waiting for you to fill it with HOPE instead of despair.

  • EU
    6 years ago

    I really enjoyed your blog about “remaking oneself” when confronted with a condition such as MS. As you suggest, sometimes just taking the time to look at a situation differently can have an impact. As each day with a disability presents its many challenges, the solutions may change as well. In which case, the remade self may look a little different too.

    Rochelle Denning
    Founder, http://www.easyundies.net

  • David
    7 years ago

    Well done Christine, you summed up my feelings quite well. I would like to type more, but my fingers are trembling so bad right now, I just might drop an F bomb! keep up the good work!

    David

  • Nicole Lemelle author
    7 years ago

    Thanks for your thoughtful comment. I learning that through my difficulties the person that I love continues to shine through. I find right now I may be living my worse nightmare….but I’ still live with goals and purpose, just not the ones I thought.

  • ChristinaS.N.
    7 years ago

    I often find myself having to steer away from the “Why me?” and navigate to the “Why not me?” Especially now that I am in nursing school. I tire easily, when I wake up I already feel as though I have run a marathon thanks in part to MS fatigue, and when I look at the girls in my class, err women in my classes, they do not have the same struggles I do. I want to scream and throw a tantrum and yell “It Isn’t Fair” at the top of my lungs, but all it is going to amount to is the possibility of a psych consult and the offer of pampers and a pacifier by potential passer-by’s.

    I keep driving the MS 500 of the grieving process it seems sometimes. “In lap one we have depression . . . yes, depression is rounding turn one with its head hung low, it should be careful around that turn as it might just bonk that honker there. It looks like . . . is that red I see . . . yes yes, anger. Anger is in the lead for lap two, followed closely by Bargaining in lane three. That can’t be who I think it is, I refuse to believe that they made it up to the top ten . . . It’s Denial then that should mean acceptance is close behind right . . . right . . . has anyone seen acceptance? Hmm, it appears acceptance took a sabbatical so around the track we go again.”

    I can’t help but think sometimes how I miss not having burning in my legs, to race to the bathroom like a maniac who absolutely “loves” toilets. I would love to just have everything even out . . . its not that way with MS. Its a roller-coaster. One day everything is okay maybe even two or three days are okay, then stress hits and now you start slowly ascending. One symptom here, another there until you reach the precipice and you are having three and four at a time and none of them pleasant or easy and you fear what that sudden fall might bring. Exacerbation, no exacerbation. Flare-up, no flare-up, or will it just even out again.

    The most hateful part of this disease for me . . . is the unknown. Not knowing. It really has an effect on my job. If I wake up and can’t move my hands well, or can’t see again . . . that’s going to put a huge cramp in my nursing abilities.

    I suppose those are my shared fears. I will keep you in my thoughts as you continue your journey with MS.

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