There are not many people that I know well, that know I have MS, and of course they don’t know I have this blog. I’m not sure why that is. I’m not ashamed to say I have MS because it’s nothing to be ashamed about. But in the beginning when I said to people that I have MS, I could sense that they felt sorry for me and that I’ll probably be a cripple soon. That still could happen, but I just don’t want people to feel sorry for me. Come to think of it, my daughter doesn’t even know I have this blog. She knows I have MS, but not this. I need to fix that. I need also to share with people that I have this disease. I look at Ashley Kumlein who is running across the United States and shouting as loud as she can that her mother has MS and that she will raise money to help find a cure for it. I think there’s only a handful of people that I run with that know I have MS. And their first reaction is “oh, I’m so sorry”. I guess I just don’t want that, but what do I expect them to say? “Hang in there man. You could be hit by a bus tomorrow, so don’t worry about it”?
I still have that guilty feeling too that I am doing well and that others are not. The local chapter of MS has these get togethers all the time for people with MS, and I have absolutely no desire to go. I’ll get the feeling that they will look at me and say “what is HE doing here”? I’ve thought about going, and then walking in the room with a slight limp just to give me some street cred, but I know I would mess it up and limp on a different leg after awhile. I could say though that the MS jumps from one leg to another with no reason. I know, I’m just not right.
It is nice to know I am not the only one to keep quiet about having MS and for the same reasons!
Hi there – I just stumbled across your blog because I too have MS and I just started training for my first 5K – something I’ve found that I really enjoy. I look forward to following your blog.
This entry struck a chord with me: I have also been lucky and have had limited physical effects from the MS I have felt exactly the way you describe. Only my close friends and family know about my illness, and not because I’m ashamed, but more because I’ve found that people generally don’t know how to react or what to say — and I don’t blame them! I’ve also found it’s hard to find a good time/circumstance to tell people, especially when you’ve known them for year. It’s weird out of the blue to say, “by the way, I have MS.”
I’ve also experienced the guilt you write about. I actually attended an MS Society meeting and the first question everyone asked me as I met them was whether I had MS. I kinda felt like I had to prove myself.
And thanks for sharing the story of Ashley Kumlein!
Amy and Jen,
Wow! Nice to know that there are others that feel the same way as I do out there. Thanks for reading!
I was diagnosed with MS 2 years ago (i am 39 years old) and I am also from the lucky ones. I have run a number of marathons, a dozen of half marathons and cycle brevets (long distance cycling events of 200, 300 and 400 km). I do not feel comfortable also saying that I have MS because I cannot stand the fact that they look at me in an “I am so sorry” way. Keep running friend…
You too George. Thanks!
Just wanted to say hi – I found your blog while googling around for what folks have written about the Bolder Boulder – will you be competing this year?
I have MS, too (50 years old, diagnosed in 1994), and will be doing my second Bolder Boulder this year (this time in the pro wheelchair wave).
I’m bummed! I’m not doing the Bolder Boulder this year. I’ve done it the last 3 years though, and the last 2 I did with my son, but he’s not coming out here to do it this year, so I kind of didn’t want to do it without him. Oh well. Good luck doing it in the wheelchair! That is most inspiring.
Too bad about your son not coming out. Well, enjoy your Memorial Day off, and look for me on TV (I’ll be the one coming in last
).
Hi!
I too have MS and came across your blog while researching running with MS. I am also one of those people with MS that people look at and say “Really, I would have never guessed.” Well I guess you wouldn’t. I have been Spinning for sometime now and have been wondering if I could possibly get into running. I just attended a friend’s triathalon and was so facinated by it and people’s athleticism that I’m thinking about maybe learning to run or swim so that I could participate in a duathalon.
So my question to you is, you took up running to see if you could do it (which is what I’m going to try) so how did you begin? I think my only issue would be that when I start to get over heated, I feel weak and unstable. Did/Do you have anything like that and if so, how do you deal with it?
Would love any advice you may have!
Paula
Columbus,Ohio
They have MS meetings for people that are called “But you look too good to have MS” Although finding one is the hard part.
Hi Paula,
That would be one meeting that I would like to attend!
I began running by actually walking on the treadmill, and then every once in awhile I would break out into a run. Eventually I could go 2 miles on the treadmill, so I thought I would try running outside. I did a mile, but I had to stop 3 times! Running outside is so much different than the treadmill. But I kept at it until i could run 3 miles without stopping. That’s when I did my first 5K and have never stopped. This time of year is very difficult with the heat. I try and get my runs in at 5:30 in the morning to beat the heat. It’s tough to get up and run that early, but it beats having to run after work when it’s still 85 degrees out. Good luck with that and let me know how it goes.
Dave
Dave,
I just found your blog and it encourages me. I have ben running half marathons for 4 years (10 and counting). In June I had a “leg issue” 10 yards from the finnish. Long story short I got the official dx on MS in Aug. I did my first half marathon post DX last weekend, kind of a beat ms. Did my best time in 18 months. I am planning on doing my first marathon in Feb. Get it done while I still can since we don’t know where MS will take us. Like you and all respondants I have told few folks about my MS. Great blog thanks for posting.
Hi Dave,
I was reading an article on NPR about one doctor’s research on MS: http://www.npr.org/2011/01/31/133247319/doctor-challenges-cause-of-ms-and-treatment&sc=nl&cc=es-20110206
It made me wonder if runners get MS less frequently than the overall population because of better circulation. Did you say that since you took up running, your symptoms were, for want of a better word, delayed? I know 3 people with MS and none of them are athletic. Do you think there is a correlation? Any research on that topic?
I do not have MS. I am a very slow runner and have done 2 marathons so I found I related to your blog. I cannot run in the heat, either, but it’s because I don’t perspire enough.
I teach beginners’ running to people and have an excellent 9 week program if you would like me to pass it along.
Anyway, best of luck – may you keep running for a very long time!
Mimi
Hi Mimi,
Interesting article. In my case, I really don’t know for sure if running slowed down my MS or not. I just know that shortly after I was diagnosed, I took up running and so far my MS seems to be under control. Maybe it’s a combination of things, my medication, lifestyle, exercise. Who knows.
Congrats on doing 2 marathons! And feel free to pass along your training program.
Dave