life can be lonely with ms

By izzabella

1 min read

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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Lisa Emrich Moderator & Contributor
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
1. izzabella Member
 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....
2. izzabella Member
 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.
jimmy Member
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.
1. izzabella Member
 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.
2. not found
 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."
onebigdad Member
Yes! I never realized how many friends I did not have until I was diagnosed and unable to work
1. izzabella Member
 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....
allanmiller Member
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.
1. izzabella Member
 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...
chrissie Member
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.
1. izzabella Member
 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....
2. izzabella Member
 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....