Friday, March 19, 2010 Shellybelly asks

Q: I look normal but I am suffering. No one understands.

I have an MS diagnosis. I look healthy. I am 44 and currently having my 5th bout with Trigeminal Neurolgia for which I take Carbamazepine. Besides the stabbing in my head the rest of my head feels like mashed potatoes, my face is burning, my legs are burning, my feet are numb. I have had left side weakness for years and I feel useless.

My family gives me a heavy sigh if I give them MS related reading material, they offer their own diagnosis, calling my doctors stupid. My husband pats my leg whilst saying, I know, I know. My mother says I've been standing too close to a microwave. My dad tells me to take Tylenol and my teen children ask how I feel but don't really care because they are happy with my "I'm fine" response.

I am hurting, sad and a little scared and even a small part of myself agrees that the MRI's are wrong, that the doctors are wrong, that my pain would go away if I stopped giving in to it. If I'm feeling this bad then there should be a big sign to let others know....I'M NOT OKAY!

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Answers (5)

Vicki, Health Guide

3/21/10 7:03am

Hi Shellybelly,

I think Sherry covered it pretty well.

MS is often an invisible disease, and no one who has not lived with it or very close to it will ever understand. Aren't there times it is difficult for you to understand, and you live with it!

There are some people here on Health Central's MS section who understand it when you talk about it, and understand it when they live through it. There are others who understand the MS, but not the trigeminal neuralgia.

I am extra sorry you are experiencing life with trigeminal neuralgia (TN). I have a hard time keeping it invisible during an attack. I have had TN for three years now. I go through periods where I cannot talk or even eat without bringing on a new attack.

It is not fair and not understandable, especially when your family doesn't want to read more material. The best I can do is appreciate times with no attacks. You can always talk to me.

I wish you luck and long periods with no attacks.

Sherry O

3/20/10 2:25am

Hi Shellybelly,

I totally relate to your issue. I don't think it matters how much information you give people, it is easier for them to deal with the MS with denial, because they can't relate, only those who have walked in our shoes can know how you might feel. Since many symptoms are invisible, it helps people to rationalize but,"you look so good". They didn't see that it took 2-3 hrs. to get that way. Having been a Case Manager, working with seniors and, those living a disability, I met some amazing people who coped with some horrible symptoms. I always remember dear Mrs. Brown, she was tall and always impeccibly dressed, the hair, the makeup and her wonderful smile. I had met her at a tea our agency was having; she had just come home from hospital after having another tumour the size of a football, removed from her abdomen. Initially, she had chemo but, it never stopped the growth of these giant tumours so she decided to stop chemo and, just have the surgery when necessary. I commented on how well she looked. Her response was "just because you feel bad doesn't mean you have to look bad". She passed away years ago but, those words make me feel better when I take the time to do so. I have finally come to terms with the fact, most people will never understand. That is why this site is so valuable. We have the blessing of being able to chat with those who really do understand. It really is a bitch dealing with the pain, lying down and, not being able to sleep. I have gone 5 days without sleep and the crash & burn lasts just about as long.

I have found a sense of humour to be one thing that helps. Also, it is just as easy to look up as it is to look down. If we have to live with this disease than use it to our advantage! I get the best parking spots because of my handicap sticker; get better seats at alot of events, regardless of the aide - cane, walker, etc. It is really great to go to the ticket counter with someone pushing you in your wheelchair, you can get some awesome seats!!! You can also look good even in "the chair"! The upside to having to using mobility aides is people finally except your challenges because the see a tangable item that they can wrap their head around! Also a great excuse for getting out of invites you don't want to attend!

Years ago, Billy Crystal said, "darling it is better to look good than to feel good"! Can't remember the character he was playing on Sat. Night Live. It aptly describes our feelings many days. The other days you stay in bed!

Try to keep smiling, it really helps pick you up, along with those you smiled at.

The blessings received from God are many, we don't always see them right away.

Warm regards,

SherryO

Shellybelly

3/20/10 4:37pm

Thank you, thank you, I was having a crybaby day yesterday and feel so much better emotionally today :~)

I haven't been looking at any of the positive. Perhaps I should use MS to my benefit instead of pretending I don't have it. I look normal so I want to be normal and that obviously is not working here....so, Yes, I have MS and it's a huge pain in my butt (and everywhere else) but I look fabulous with it, lol. Here comes great concert seats, ideal parking spaces and a giggle when my words make me sound drunk because I know I'll be without the hangover.

Thank you so much ladies <3

Michele

momdukes

3/20/10 8:51am

Oh Sherry O that was so beautifully said. I may hurt from head to toe, but you are not going to be able to tell by looking at me! Shellybellt, this illness is so hard for others to understand. That is just the way our cookie has crumbled. But I am not crazy, I know what hurts, what doesn't work anymore. I tell my daugthers all the time, no one is forever young. You can steroid, botox or whatever your poison is but time always slow walks all of us down. Do not worry if people do not understand, sorry, but they never will. Yep with a wheelchair you can get some awsome seats at an event! My motto is I did not ask for this handicapp, so I have no choice but to use it to my advantage Smile it could be worst. I cannot see as good as I use to, I get fatiqued quickly, but I am up everyday, at 6:00 a.m. No where to go but hey I can still get up! My family is wonderful, but in reality they do not really know the troubles I see, or feel It is not heir faults, it is just the way that it is. I don't get mad, neither should you, just smile time and mother nature has a way of making things so much clearer for them. Take care!

sherry/smomdukes

thelambsink

8/14/10 12:17pm

heyshellybelly. I am daniel and I know for a fact docs do not make this diagnoses easily they are afraid of being wrong i know it took seven sets of test and five docs. I guess we are not the only ones in denial about this disease. I do not believe your little ones do not care I think they are avoiding their own issues perhaps talking it out with them and finding out how all of you feel will help. If you do not believe the docs then have him show you the films and see for yourself. I also hope it does not take a bad episode to truly find out. Your feelings are real and acceptable let others know to accept how you feel too! bye for now. thelambsink@netzero.net

Julie

8/19/10 10:23am

Hi Shellybelly:

I just ran across your question and I know exactly how you are feeling! I'm always questioning whether I'm REALLY feeling bad or if I'm somehow overreacting. Once, I even asked my dr if she was really positively sure I had MS. She looked at me strangely, cited all my lesions and more serious issues, and said she was really positively sure.

It's hard when people around you seem to conspire to convince you that you're not feeling as badly as you do. In a way, it's nice, because it lets me live as normal a life as possible and keep a positive face to the world. The downside, as you've detailed, is that the people you rely on most and who are closest to you, seem to have little understanding of how you are doing. I could use a little private encouragement from those close to me -- and I'm sure you could too.

Try not to let their judgments of you become your own judgments of you. Make sure you verbalize how you're feeling once in a while. Take care of yourself.

- Julie

Q: I look normal but I am suffering. No one understands.

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