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.
"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 said it all in a nutshell. Why do we blame ourselves for not doing better? Why do we think mind over matter will do the trick? Not that a good attitude won't help -- it will. But it can't cure MS and it can't make a body do what it won't.
I hope that by sharing these thoughts with each other that we can collectively do away with the lion's share of our guilt.
Last December, in my very first post, I spoke about "Strength in Numbers." I still believe that together, we are stronger.
Thank you for sharing.
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)
I got really touched by your comment. Upset really.. Why are you so angry with those who do not want to accept the fact that they have MS that can put them in a wheelchair eventually..What should we do ?? moan about life and wonder about euthanasia? Do you ever think that your comment (wait for 5 years..) can distress people who are very vulnerable ?you did indeed at some point gave me a sleepless night of :"its all going to end soon and we will all be handicapped.. thank you.
Sorry, it's never my intention to distress anyone. Life can be distressing enough. That being said, I wrote that comment 3 years ago. In that time I have had relapses, some doozies, and remittances where I was almost damn near "normal". During those symptom free or almost free times, I could easily pat myself on the back and attribute my good fortune to my recent weight loss, my better attitude, my new nutritional supplement , my prayers, or whatever. Then as RRMS does...the rug gets pulled out from under your feet. Sometimes briefly, sometimes longer and more severe, but it passes to a new "normal".My point being, when some well meaning person tells me this works for them or for so and so that looks and feels marvelous, my experience tells me that 1- everyone experiences MS differently from benign sx's to severe and 2-it could be a well deserved remittance for God only knows what reason. The journey with MS is uncertain and so is the entire journey of life. I'm not angry, nor am I afraid. It is what it is and I try to make the best of it.
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
Appreciated the Paula's post as it hit home. I am probably viewed as one of those perky people who look perfectly healthy and have been diagnosed with ppms although I don't think that is necessarily 100% correct as neurologists only hear what they want, definitely MS, i've seen the MRI results. There are days of exhaustion where its questionable how to keep going. Some days with tears of frustration, can't remember the last day without pain or a full night's sleep. Struggling to keep a train of thought in a meeting. For some, perky is a way of coping to keep going. I push to walk as much as I can. some days barely across the street other days 3 miles, if I'm lucky the walking on glass feeling in my feet will go when they get numb enough that I can't feel. No one can see that so I guess I must be one of those people that is happy and healthy to others. On the better days I make the most of life. At least then the pain feels like it was for a worthwhile reason. Even the days where I'm too tired to shower, I still do my hair and makeup and put on a happy outfit, no sweats or yoga pants, it usually perks me up. I don't talk about it at work, its no one's business. I now have short term and long term goals. I've learned that sometimes choices have to be made, no walk if I have to go somewhere, events do not get attended. I hate listening to people moan and groan about health complaints so I figure no one needs to hear about mine. When they do, my family knows I'm in a really bad place. I used to run, that went out the window a few years ago. Two days ago I ran 1/2 a mile which was a huge celebration. I may never do it again and two weeks ago I couldn't make it through the grocery store. For years off and on, there have been broken bones and bruises from falls, at least I know I'm not just a clutz. Those perky people you see interviewed etc, probably had to give something up or lie on a couch after. You don't know if they can feel their legs or if they have a searing headache, covered in bruised from walking into walls, pain shooting through their legs or any of the other multiple symptoms, unless forced to a wheelchair, MS can be covered up quite effectively, I should know. Its my choice not to share all the details, not out of guilt, out of privacy and that I don't need to be the next topic of gossip or have people say that I look good and like I'm doing well when I know i'm not. The future is ugly enough, so I chose to take satisfaction in the good even if its a small thing like no headache for the day, or only my feet going numb instead of up to my hips.
Don't be too harsh on those perky people, they are probablly dealing with lots too that just isn't as apparent. Everyone has their own way of coping whether it be trying to be positive or suffering out loud, no one should feel guilty for how they feel or appear to others.
It's nice to see that someone appreciates my "stubborness" for a change...and thank you for agreeing with me.. Even though I can no longer run...a feat I took for granted for so long, I cheer you on for making the plunge. Having a good day, I often jump at the chance to so something physically challenging for me, because the power does'nt last, as you know. Lately it's been a bit lacking in my body and not wanting to waste precious moments.. I decided to take on classes in something simple...like jewelry making. It's way too difficult for me to waste time. having to soend one day in bed last week, pushed me over the edge emotionally...and I just could'nt grasp the feeling of no strength, so I insisted that it pass quicker in my head, than my body, and it worked! I get even angrier with myself..especially since it is so uncommon to see me sitting still at all and that seem to make it "go away".
Keeping things to myself are so automatic ...but as I proceeded to get into the work in my class, my hand went totally numb! Annoyed...and angry with myself once again, I noticed several of the other women in class staring at me.I had dropped the delicate little bracelet that I had carefully designed without feeling it slip away...and had to start over again..Slowest in class I'm afraid,but just for a second...when one of the women commented that she "also"had carpel tunnel, I became insensed inside, a feeling I often have when someone somehow automatically "relates" to a slight struggle I may be having. But I let it go...determined to finish my work.Unfortunately, I did'nt quite get there. My level of stubborness often makes me even more determined to get through anything.
Taking my incomplete project home, when everyone wore theirs, I somehow had allowed it to humiliate me inside. So darn silly...but that's me. I was up until midnight that night...and I finished that pretty little piece, along with making matching earrings, that were as delicate as the bracelet, so I "fixed her" comment did'nt I..and she'll never know! Not exactly a major physical feat...but this is my level of incredible stubborness in always getting things accomplished. It has never faltered, no matter what, and even more so, since my diagnosis. But to me it is in my favor for all that extra strength that is needed & I will never let go.
As I sat there in class, I automatically thought that they should have seen me a few weeks before...I completed the 3 of the 5 miles for the MS Walk, something that I never thought I'd be able to even attempt. As painful as it was, I am proud of myself..Yes I paid for it for the next several days because everything hurt all at once, 24 hours a day...but I still grinned from ear to ear. It gave me yet another sense of accomplishment that I was looking for. Imagine being envious of someone running across the street..when sometimes my mailbox...seems like such a relentless journey to me. As I sat in the function hall for a wonderful luncheon after the Walk, all I could do was sip water. The pain overcame every sense that I had in my body.My husband and daughter sensed it and played along with my wishes of annonimity..as I seemed to sink further back within myself, all the while showing that same grin, & I so appreciated their support. The older I get, the more I have a sense of what can happen...but I won't let it...it isnt fair to anyone in my life..and certainly not to me to let it take over.We are soldiers that have been recruited into a war with this MonSter and knowing that anticipation can sometimes be worse than what actually happens at times, that in itself makes me more determined and certainly a lot stronger in this fight. 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
The last two comments speak volumes. Apparently this is a very sensitive issue and I'm glad we're getting it all out in the open.
I guess guilt has even more far-reaching consequences than I realized. Guilt and anger for having MS. Guilt for what it does to our loved ones. Guilt for having a case which is too mild. Fear of offending other MSrs. It goes on and on.
Seems I hit the nail on the head when I said that guilt should be added to the list of symptoms.
We would love to hear more from you on this issue, so please keep those comments coming. This is an important discussion and all points of view are welcome.
I am one of those with relapsing MS which does relapse from time to time (feel free to read my story here). I am one of those who is heavily into sports and will use it for all it's worth to share with others the complexities of MS and its variations. I always share that my case is not a representation of all cases and their is a progressive version that has very little in common with relapsing MS. I also share that relapsing MS also has extreme variations as well. I do take every advantage of every extreme sport I do to give attention to several items:
1) MS is a variable disease which currently has no cure.
2) If you are just finding out you have MS, I have had it for 28 years and I am active, do not set expectations that you will get worse or better, just don't give up.
3) Will power does not change the course of the disease but it does help give you the hope to persevere in very hard times.
4) If you have relapsing MS do not discount disease modifying drug therapy, research them and try one out.
Please feel free to respond as I want to be responsable with my actions in representing the MS community and trying to someday make this a MS free world.
If you are looking for a great athletic shirt for MS athletes, check out the site below. They make shirts that cool the runner/triathlete/athlete, etc cooler than the outside temps. I read about them and bought one for my aunt, she loves it. I would suggest you give them a try. Changed my aunt's life in regards to running.
I guess this is to everyone out there...
I don't have MS or anything, and I'm not out running any marathons either. Most people who have unhindered capability don't! So what's "our" excuse?
Frankly, anybody who is out there trying the best they can to deal with such a ordealized illness has more than just my sympathy. You have my respect. I don't just mean people who keep a positive, attitude, although they do too! It's the fact that one is trying their best to deal with what's been thrown at them. It's that kind of "keep calm and carry on" thing.
If anyone out there does feel guilty for what they've not done, you probably "do" more before 9am than I do all day simply by persevering!
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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
Joan,
MS attacks some of us harder than others. Just because we are not among those perky "MS doesn't have me" types, does not mean that we aren't trying hard enough. There is room for all of us, don't you think?
Wouldn't it be great if some of the public faces of MS were more like you and me? A great talk show panel would consist of about six MS patients, from the ultra perky to the totally disabled and every shade in between. Then we'd have something!
I've visited your blog enough times to know that you fight as hard as anybody.
Thanks for stopping by to read and comment. Your candor is refreshing!