Shouldn't You Be Running a Marathon?

I am so tired of hearing about perky people with MS who jump up and down and yell, "MS doesn't have me!" as if they are proud to have conquered the beast all through the power of their mind and sheer determination.

I'm not one of those people.  MS has me, that's all there is to it now.

shortinthecord.blogspot.com

Mandy

You speak words of wisdom, thank you for posting, I enjoy reading your post.  Guilt is a hard thing to get over.  I have that problem.  I feel like I can't discern if some of my ailments are physcological or real, and I feel guilty.  I feel guilty because I can't explain to others that I'm exhausted in a way they can understand because I don't appear to have any ailments.  I can't explain to others that I just don't get it because I a mentally fatigued and my mind is not processing information as it should.   Because I don't look like a sickly person, others (family), don't understand when I just don't feel well.  I feel guilty because I think I should just suck it up and do my best to push pass the pain, fatigue, a mental dysfunction,  but I'm not doing a good job.  I feel like if I can only develop a mind over matter attitude I won't feel so tired, but then my mind doesn't work so well all the time. 

You are right, Guilt, is definetly a symptom of MS that is overlooked.

Great Post Mandy. Especially true about the guilt factor. I do get tired of being compared to the snowboarding, marathon running successful career person with MS. Lets not forget those that have declared thenselves cured by this or that excercise and diet regime. (would love to talk to them again in 5 years time)

No I can't quite say I have "the guilt thing" It's almost as if this MonSter is my own private "taboo." Yet people don't understand that I even have it, because I go to the gym 5 days a week. But, I will never make excuses for myself because I have been handed a bowl of sour grapes. I was asked if I was "Actually diagnosed with MS for real" a few days ago because of being in the gym! They did'nt have a clue that what I was doing at the time, hurt like hell..even in small doses. They wouldnt understand that my skin from the waist down feels like it's on fire and ripping at the same time and the feeling never stops because complications from a broken neck which resulted in "further permanent" nerve damage that exaserbated the MS is apparent. Well duh..yes, 10 years ago I was given the shocker news! Who in their right mind would even fabricate something so dibilitating. All because I was talking about my quest to keep my energy level up and pump that iron (upper body only) of course. My legs, well..they hurt 24 hours a day waking me out of sleep many times a night, but I won't let it rule me for as long as I can keep it at bay with all my "temporary cures".  I agree, we all do have "Different" MS symptoms.. some worse than others,  and my heart goes out to those that do, and that scares me more than I care to admit. But bottom line, it gets us one way or another and when we least expect it, no matter who we are. Some exaserbations are worse than others.. and that scares me too, even though I have been fortunate enough to keep them at bay for a long while now..so I must be doing something right. Losing the sight in one eye for several months a few years back was enough to make me verse myself in every aspect inasmuch as I could understand about it after I regained my sight.  I dont claim to be super woman..maybe a few years ago  before the fact, I felt like I was..as did everyone else in my life and I acted accordingly. But now, no one realizes how much pain I really live with because I keep it to myself forthemostpart and I go on to do the best I can. I refuse to wear my heart on my sleeve. I'm no hero, but a negative attitude adds to the pain for me. Been there... done that too! Yes, there are  many days I can't even get my legs out of bed without picking them up manually..and I'm in slow motion, but I get through it,and go on. I'm not guilty..I am incredibly angry if you want the truth. That's what keeps my body moving even with some of the worst pain. I was handed something that isnt fair, once again. I've been through a lot of trauma in my life, both physically and emotionally and this horror just puts the icing on the cake for me. No matter how it happened , whether it's the possibility of a virus, or an injury, or genetics, or any other theories that medical science has or doesn't have, we all got handed this lemon, and I for one have my own theories that I keep to myself. My neuro respects my feelings and rallies me on to continue what I'm doing...and I intend to do whatever it takes to fight it my way for as long as this broken body will allow me to. Short of a miracle, we all have our own crosses to bear with this. My own feelings do not in any way diminish anyone elses diagnosis, believe me. I am the first one to understand and I remain compassionate towards everyone. But our bodies all have different strengths and weaknesses, even without this MonSter that invaded our lives. Be well Paula

Mandy,

Thank you for your post. I am feeling a bit attacked by Joan's comment since that is my e-mail name, but I am hoping that she was just saying it in general.

I guess most times, I fall into the category of mild ms. But whereas I know a lot of people that because of this, they don't say anything, I chose to "come out." I recognize that I have been very blessed with the course of the disease thus far and it was my duty to raise money and educate people about the disease. In my letter on my webpage for the Challenge Walk, I say that I walk because I still can and will continue to walk for those who can't so that someday (hopefully soon) these people will be able to join me in walking too.

When I first started my support group, I said that I should be a poster child for MS, but I quickly decided that it would be a disservice to the disease. I was asked to be someones Champion of MS for the MS Bike tour and I turned it down for the reason that I did look too good. I didn't want anyone to look and say this disease can't be that bad, just look at Kristin. I know so many people with the symptoms you mentioned (and from time to time, that is me included) and I did not want to downplay in anyway (unintentionally) the disease.

As for the guilt that you mentioned, I too felt guilty, but not in the same way that the others commented about. I felt guilty because my MS is mild. I attended an MS Society sponsored support group back in 2000. I was asked to go and distribute brochures for the upcoming MS Walk and to see if anyone in the group would be interested in participating/volunteering/cheering. When I arrived, late, running in with a box of brochures, I was greeted by the attendees almost all of whom used some sort of assisted wallking device. I decided not to share that I too had MS because I felt guilty that I was handed the hand I was given and their MS was so much worse. (I was actually outed because I knew the group leader and he asked me which drug I was on.)

I hope this makes sense. I am not trying to sing my praises, either. Maybe the go- getters are raising awareness for some of the same reasons I said.

Kristin

i suppose i am one of those who have a mild form of MS at this moment in time.  but i wasn't one to run marathons before my MS and i sure as hell ain't running any now.  i just want to survive the days ahead and find some enjoyment in life. 

www.mser4.blogspot.com

wow, you hit home today! I just posted about feeling bad for attaching a "i have MS and can't work" face to this terrible disease...but it is what I need to do, for me...and my family.  Thanks for your thoughts!

Thanks Mandy - this is a great dialog.  It's so wonderful to see so many of of members speakng up - feeling part of the community and sharing.  I'm certain it can only grow from here. 

Your words help to draw us in - thanks for helping to validate and bring issue to light.

All the best, sue