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Posted 5/12/2007 1:58 PM (GMT 0)
neuro gave me a script for a foot/ankle (mafo) brace to improve my walking. it's not heavy or ugly, but somehow hate it as a sign that the ms is getting worse. seems my right foot was dragging. does anyone else have a brace? hope it will help keep me upright so i don't trip over a piece of paper, but still feel a bit defeated. also, does it bother you when someone tells you how well you're doing when so and so is so much worse. get resentful because they can't feel the vegetable peeler scraping of skin or the loss of balance. not good ms times lately. linda
Posted 5/12/2007 3:36 PM (GMT 0)

Hey Linda,

I don't use a brace but my head is in the same place yours is.  It bugs me too when people tell me, "you look great" or "you can't even tell you have MS".  I know in my head that is a compliment but somehow it feels like they are disregarding how hard this disease can be.  Then I feel really guilty about feeling that way.  This is a difficult disease and healthy friends don't usually understand it.  Hang tough Linda.  Fight the good fight even if it means using braces, or canes or whatever.  Know that I understand what you are feeling.  I don't imagine this was a super helpful post but your thread touched me. 

Love and prayers,

Posted 5/12/2007 4:33 PM (GMT 0)
what does ms look like? know what you mean. i usually (after choking down screams) just say that it is a nasty disease and hits everyone differently. thanks for putting it in perspective. i have a friend who has ms, but it got him in the retna. so no matter how "badly" you have ms, it's bad. linda
Posted 5/12/2007 5:08 PM (GMT 0)
I also relate with this. People look at me and see a young person who can still walk around, and so they assume I am fine even though they know I have MS. They have no idea what the daily aches and pains and numbness feel like, how some days it's the hardest thing in the world to just crawl out of bed because I am so fatigued. Yes, I acknowledge that things could definitely be worse, but I really don't need that pointed out to me thank you very much. It does feel like people are dismissing the whole thing when they say that.

At the same time, though, like Gretchen said....I do feel kind of guilty for feeling that way. I know that people can't understand something they haven't gone through and I suppose I shouldn't expect them to. I guess what really gets to me is that people can be really obtuse about it and say really stupid crap. My thoughts are if you don't understand and don't know what to say, that is okay...then just don't say anything. Really. Because "you don't look so bad to me" is not making me feel any better, even if you mean it in a nice way.
Posted 5/12/2007 6:22 PM (GMT 0)

  This is me dittoing what you are all saying. The old standard of everyone with ms must be in a wheelchair to be really affected by this disease is passe. Please don't get me wrong, all ms people suffer greatly, wheelchair bound or not. I have spms and what it is doing to me inside is an unseen story. The loss of cognitive function, the unrelenting pain, the ataxia. the slurred speaking etc, etc. People are always telling me I look fine. They want me to be the high energy person I always was. Some days that Dale can't come out and play because I just ran out of "Depends"...lol tongue . If you tell people that you have ms, you are feeling sorry for yourself. If you keep a stiff upper lip then you are being a martyr. Can't win so be your self and on those really good days smile and be happy. On bad days just quietly let those people know you are having a bad day. Use everything you can to help with any disablities you are dealing with including braces, wheelchairs, canes, speech therapists, meds. We are in it for the long run...so to speak yeah .  The only thing I do not tolerate from anyone are those who tell me everyone deal with an uncetain future. Be that as it may (I believe nature has a built in way of dealing with normal life and its uncertainties) but when you are certain that your future will be an up hill path battle with few consistancies, it is a whole other ball game. Just ask those in limboland how much the uncertainity of their health status drives them to distraction and constant worry. So hang in there and know that we are all rooting for each other in our own way because we do understand.

  Now that I am finished with that rant, I hope you all have a great weekend. Sometimes venting is good for the soul. All you Moms have a great Mother's day tomorrow. My daughter, who has alway loved books since she was a baby, sent me " The Best Mom Ever " book and some mints...Hmmm...best mom ever but with bad breath??? lol devil     Dale

Posted 5/12/2007 7:59 PM (GMT 0)

I can totally relate to all the things everyone says.  There are some days I'd love to switch places with all the people who say, but you look so good, so they can feel what I feel.

I have when its needed, used a cane for stability.  I was very uncomfortable at first, and thought my 11 and 15 year old daughters would be embarassed.  But now if I so much as stumble, one of my girls run to get my cane and tell me to use it because I need it.  I am sorry you need a brace, but anything that can help us to stay mobile is truly a blessing.  I guess my girls would be more embarassed if my fat a-- fell onto the ground, I wet my pants, and they'd have to help me up.  Yes, I laugh at myself alot, it helps.

Debbie

Posted 5/12/2007 8:12 PM (GMT 0)
Wow, thanks for posting about this.....reading this thread makes me feel so much less alone!
Posted 5/12/2007 9:11 PM (GMT 0)

Linda,

Thanks for starting a powerful thread.  It is amazing.  I too feel "normal" if even just for a little while.  Thanks, everyone, who posted.  It showed great courage and has helped me feel like maybe I am not going crazy.

Love and prayers,

Posted 5/13/2007 12:46 AM (GMT 0)
I always knew that other people with MS probably knew what I was going through, but it's sure nice to see it here, in print, and in almost the exact same words I would use to describe it all.
Posted 5/13/2007 7:13 AM (GMT 0)

Hi guys,

Great thread!  I too am having the same thoughts.

I'm actually taking a trip home tomorrow (it's about a 4 hour drive) and have been thinking about this.  I update my family about how I'm doing over the phone, but I am looking the best I have in years (lost 50 pounds!) so I know it's hard for them to comprehend that I have less energy than before.

Yesterday I decided to email them information about MS fatigue.  I found a great site that explains it simply and I told them it was important to me that they understand.  This morning my mom got back to me and said yes, it is hard for others to understand but reading about it helped a lot. 

Long story short, I feel better going home tomorrow knowing that my mom won't ask me to join her in her 4km walk, my sister won't drag me to the mall for hours, and if I need to have a midday nap, they will understand why now and not tease me about it (well, they probably still will, but that's ok.)  :-)

Shar

Posted 5/13/2007 2:12 PM (GMT 0)
Ditto, Ditto, Ditto!

I have been dealing with this for years.  Of course we want to "look" good but when you are constantly told..."You look too good to be sick, or you certainly don't look like anything is wrong, or why aren't you in a wheelchair if you have MS?"

 

 

I just had my large intestine removed due to ms related problems....no one can wrap their tiny minds around that!  Ms causes so many different problems, many are "visual" for folks to actually see but for most of us they are "internal" only we know what we are feeling and dealing with day to day.

 

Hugs to all of us, Lord help us to fight the good fight and do the best we can whether we "look" like MS or not!!

Posted 5/13/2007 2:30 PM (GMT 0)
wow! feels good to share feelings about ms and not feel so alone as usual. there has been education about ms which we give out to friends and family. have a friend who was sympathetic about my ms, but didn't get it. then montel williams had a show on about it and by watching, got a better understanding. well, whatever works. dreading seeing mother today. she will never get it. just keeps reminding me that annette funnicello (sp... original mousketeer) has ms. also, get the so and so has it and is all crippled up. grrrrrr scream!!! whew! needed that! thanks especially to those on this list who help me understand ms!
Posted 5/13/2007 3:52 PM (GMT 0)
Hi everyone - I was dx with MS in April 2005 and in December of that year had the worst flare so far.  This particular flare affected my legs - walking, balance, gait, etc.  I was in rehab for 3 months which greatly improved everything and was also given an RX for a brace for foot drop and wore it a lot last year.  I also had to begin using a cane.  Linda - I know what you mean when you say "it's a sign that the MS is getting worse".  For me in a matter of 7 months, my MS went from an 'invisble" disease to a very "visible" disease.  I had a hard time getting use to that and I really had to work on my frame of mind - especially when my family and friends said "But, Karen, you look so good"!  If they could only feel my numb left foot or the stiffness in my left leg.  I don't use the brace much more but I use my cane every day (in fact, I have received many compliments on it - it's a white cane with pretty blue flowers all over it).  The way I look at it - my cane helps me with mobility and balance and also prevents me from falling.  My bones have lost density due to all of the steriods I have been on.  I can't afford to fall a break a bone(s)! Hang in there!  Good luck with everything! Karen
Posted 5/17/2007 5:23 AM (GMT 0)
you guys rock. I can't tell you how much I needed to read this thread tonight. I am one of those in limbo and it can be a really lonely place. Most people have no idea what I go through on a daily basis- and I don't talk about it with them because I feel whiney and "ungrateful" because "at least I'm not in a wheelchair"-right? How many of you get the "oh, they have great treatments for MS now, my (cousin, friend, co-worker, etc) has it and you can't even tell. They're totally normal"...uh, huh.

thanks for letting me vent

blessings to you all
Posted 5/17/2007 11:06 AM (GMT 0)
"... my (cousin, friend, co-worker, etc) has it and you can't even tell. They're totally normal."

that one really hit home. get it so often. but like you say, these so-called well-meaning people don't see me cringing in pain or watch as i fall over if bending down. the brace became a sign to me that i'm not doing so well. guess i should wear it outside my slacks or something so everyone will think there is physical evidence that i am not "normal." linda
Posted 5/18/2007 1:16 AM (GMT 0)
I hope the brace helps you Linda. thanks for your sharing your experience with all of us, it really helps me to hear from you all.
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