life can be lonely with ms

Having been diagnosed 12 years ago with MS, my priorities, fears and symptoms have all changed in those years.

I used to fear not being able to walk, now I fear losing friends and loved ones that are still healthy and walk ahead, as I am reminded of my “disability”. Many times, I watch as others can still do athletic things, whereas I am plagued by the heat and the exhausting symptoms that accompany the disease.

I used to fear dying with the disease, there are times now when I fear living too long with it and becoming a burden on my family.

I used to fear waking up someday not being able to walk, or see, now I see quite cleary how the past 12 years how my life has slowly changed to a life that I never planned for.

And I fear the life that I’m left with is one that I’ll still be appreciated and want to be able to contribute something good to the world as a whole, and not a burden.

It leaves one feeling life can be lonely.

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Comments

View Comments (14)
  • Christine
    6 years ago

    Thanks for this post, Lori.
    Sometimes I feel like I am watching the world revolve around me. I was always a very active, athletic person and this disease have definitely slowed me down. My sister is a social worker and said what we are going through is mourning. Sucks but true we have to let go of the past and move on to a somewhat new life.

  • lori author
    6 years ago

    I just found out today that my friend and cousin, that wasn’t even diagnosed with MS, is dying this very minute at Duke…with an undiagnosed neurological disease….I will miss her….we were going to fight these diseases together….

  • lori author
    6 years ago

    mourning….well put….does it ever end? I was diagnosed 12 years ago….and every time I see someone doing something I was once able to do….I mourn….Sure I am grateful for what I can do, but it doesn’t mean that I don’t miss the things I can’t….

  • Peaches
    6 years ago

    Lori, your post couldn’t have been at a more perfect time. MS and I have been together for a little over 7 years now. Sometimes it feels so very new and others like its always been in my life. Christine said it perfectly. I too feel like I’m watching the world revolve all around me. I am definitely a people person and that is what I miss most! Have been on disability for almost 2 years, have not been able to drive for several years, so I feel like I’ve lost alot of independence along with so many other things. Yes, loneliness is a feeling that has definitely been added to the MS list of feelings. I so agree about MS it’s grieving process. You cannot let all the ill feelings overtake you! I can always find a positive in every day 🙂

  • Allan Miller
    6 years ago

    No matter how you slice it, it is lonely. I am 66 and “officially” diagnosed only six months ago, and already find that being heroic and trying hard gets old fast. My three new years resolutions were: “listen”, “choose”, and “pace”. Works for most things.

    Best wishes to you, Lori, and thanks for the posting.

  • lori author
    6 years ago

    I try to hide the real me and what I’m feeling and facing…I mean, really, who wants to stare at a disease with no cure….and what can they say to make us feel better….But my hiding of how I am really doing is getting harder and harder to accomplish…

  • Daniel
    6 years ago

    Yes! I never realized how many friends I did not have until I was diagnosed and unable to work

  • lori author
    6 years ago

    It’s amazing how many disappear from our lives….I guess we never really needed them in our lives then….but it’s loss and more loss that we end up facing….

  • Jimmy
    6 years ago

    You are very honest but you need to think about relationships in the honest sense, if they were real they are still there and will be whether you walk with them or roll with them, you can wheel faster than they can walk. I do what I cannot do, just find ways to do them. I find that many new friends that I would never have know seem to just show up. Water is my friend, everyday, I try and do aquatic zumba, and I scuba dive and still daily deal with the floor coming up to visit me. It is softer in the water. Water is cool, I can float and rest, and hide the fatigue. My best to you, we understand, and will try and give you suggestions on living a full life, a different way.

  • 5 years ago

    I, too spend a lot of time in the pool. I have recently begun to swim laps 2-3 times a week with a Master’s team. Wonderful exercise, wonderful teammates, and I get to be “normal.”

  • lori author
    6 years ago

    I too have found swimming to be the best physical therapy and mental therapy as well. It’s so nice to let the body and mind be free in the water and not dragged down by gravity. It’s nice to hear I’m not the only one to really enjoy the water.

  • Lisa Emrich moderator
    6 years ago

    Lori,
    Thank you for being so honest about your fears and changing priorities. I think that many of us can relate. My life has changed dramatically since my first case of optic neuritis 13 years ago. What it’s like now, I never could have predicted. But I’m fortunate to have family who are supportive and encourage me along the way. I hope that you also have close friends and family who are there for you.
    Lisa

  • lori author
    6 years ago

    I feel fortunate to have so many caring friends and family. I just pray I never get to the point where I am burden or a drag to be around….I try to stay strong, but lately, I fall asleep eating and when I wake up, I am seeing double….it’s scary.

  • lori author
    6 years ago

    I am fortunate for my family and friends, but I pray I never get to the day where they find me a drag to have around or they hate seeing what MS has done to me or taken from me. I try my hardest to keep up, but lately, I fall asleep eating and see double when I try and stay awake…it’s scary….

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