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,
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 . 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 . 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 Dale
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.
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.
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.)
Ever stop to think, and forget to start again???
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!
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face.... You must do the thing you think you cannot do." -- Eleanor Roosevelt