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Readers Respond: How Do You Let Other People Know What It Feels Like to Have MS?

Responses: 172

By

Updated October 01, 2008

Now it's your turn to share with others any creative ways that you have come up with to communicate how you feel - really feel - living day-to-day with multiple sclerosis (MS). Send in your best ideas, try out some others, take some of the more innovative suggestions from here and adapt them. After all, if we can't communicate, life gets pretty lonely and people don't know how to help us...

Jersey girl

I totally agree with everything you said Kim. I have had Ms for 5 years now. I used to be a legal secretary. I cant type anymore. Not 70 wpm like I used to. My boyfriend left me (scumbag( and now I wake up every morning wondering what I won't be able to do anymore.
—Guest Angela

I no how everyone feels

Doctors are there to find out if you have ms.but they dont care about the rest.as there not going through what we are.thats the reason why i don't fill out the questionnaires any more.even my family thinks its a joke with me.they say every day there is something wrong with you,cant you wake up happy for once in your life
—Guest Amy

living in a jail

I was diagnosed in 2010 at age 24, It only took 10 years of me telling doctors about the symptoms. I am lucky enough to beable to still be independent but that's thanks to tysabri. I was in and out of wheel chairs and not driving and all that, but for now I'm good. I have noticed now people look at me like I'm lying cause don't act sick or when I do have a bad day they act like I'm trying to get out of doing things. I wish I knew how to explain to people this never goes away and that just because I look ok or act like nothing hurts or nothing seems wrong doesn't mean everything is great. I have a positive attitude about all this (well as much of one can have) and I tell myself I wont let ms beat me but for everyone out there who knows someone with it don't let them fool u when they say they're fine. cause if they r like me they aren't going to tell u they hurt or they are sad or they cant stand. we don't want pitty but we don't want u to completely forget we might need help too.
—gorth2014

brutal

suffered for 18 yrs with chronic pain. surgery cured, but now cannot have children. thought worst was behind me. was cast in 1st play in 8 years. 2 wks prior to opening, diagnosed with MS. what's it like? 1st, lose your soul's work forever. then, wake up each day & put on a concrete suit, eyes unfocus & drift, left leg drags, feet feel bound, legs, arms, hands tingle/numb/pain combo, perpetually exhausted. full body ache as if someone put a 6 pk of coke in a pillow case and beat me with it as if i wronged them in a previous life. finally, can't feel my heart anymore. love my supportive family & friends, but can't feel it. can cry, but it's more a brain pressure release of frustration, sadness & anger. will never act again & have incurable debilitating disease. it's no wonder i can't feel my heart.
—Guest jek

Recently diagnosed with MS

I am 26 years old, I am a doctor and a researcher in the field of MS and I have just been graduated from medical school and been diagnosed with MS almost at the same time!! I must confess I cried and cried and cried for a week and half. You see patients all the time in the hospital,but you never think that the MS can actually happen to you!!! after being depressed like crazy...I started to notice that there are lots of other very bad diseases out there and MS is not the worst ... after all, every one, lets face it...researchers are doing their best, I myself am a researcher in the field of MS and I believe future treatments are on their way. I haven't told anyone about my MS yet but I believe there are many many diseases that have way much worse prognosis... so be strong and positive. I promise that there will be a cure in the near future. I promise.
—Guest Masa

Don't worry, we all have PMS

It seems we've all had moments of learning our disease called MS. I like meaning, out of the blue sky, began having trouble walking, having to close one eye to see( without the double vision ) and those tingling, numbing sensations.It's hard to explain. But effidently, even harder to understand. The first person I told outside my family was a coworker; and after crying and telling her of my symptoms; being diagnosed ect. She compassionately tap me on my shoulder and said kindly, " Don't worry my friend, all woman at some point get PMS!" That's all I got to say about that.
—Guest TJA

Here's some help

I can relate to all of you & had been on cop axone for years. Do yourselves a favour and try L.D.N. Your doctor has probably never heard of it or won't approve it. I no longer have cog fog, not up at night with sleep problems or urination, heavy feeling in legs gone, no more relapses. Not free of MS but much better. Google LDN research trust for starters. You won't look back !!!
—Guest Una

Uuuuuggggggghhhhhhhhhhh

It's all too true!!!!!!!!!!!!!!!!!!!!!!!! Although I have ms (primary progressive formerly known as chronic progressive [much fun!!!]) I consistently practice my guitar and keep my mind active and fingers and hands moving as fast as possible. I attribute GOD, guitar practicing and playing as well as diet (I am a dietitian) as being extremely instrumental in my pursuit of any semblence of a healthy life as well as lifestyle.
—Guest Keith R. Dunnington

Humbled

I was just told two days I that I have progressive MS.... Wow.. That resonates in my head when I hug my children with my weak arms or when I can barely lift them from the tub. " But Erica your tough, youll be fine" " Its not like Cancer or something" " Look at all these drugs you can take to feel better" Thanks for your advice strangers and ignorant people I know what my options are. I really just need someone to listen and tell me they love me... While the MS prognosis is different then 10 years ago I am still scared. I am 32 and my legs, arms and eyes ache. I forgot what it feels like to be normal. I will do everything I can to feel better not for myself but for my babies that dont know what MS is. May they never know.... No rest for the weary but hope for those that are believers.. God bless us alll... Stay strong, love long and don't let the good days pass you by...
—Guest Erica Daher

MS?! what's that?

When someone asks me how long I've had MS I ask "diagnosed or undiagnosed?" It took years to diagnose me, but my symptoms started ten years before that diagnosis. There are many days I am so thankful I can do as much as I can and have a family who loves me and supports me. But there are days I get so down, I know I'll never hike, camp, walk more than 10 feet without pain, or have a headache-free day. So when I describe MS to others (and I do it alot because people need to know), I tell them it is a disease that says 'STOP RIGHT WHERE YOU ARE; LIFE AS YOU KNOW IT HAS ENDED.' I want people to understand MS, not 'feel sorry for me' but to be tolerant when it takes me longer to unload my groceries at the register, to not think I'm drunk when I walk in a store, to not think I'm lazy because I want to take the store cart instead of walking. If there is an MS Walk, Bike, or Challenge Walk get involved! The money raised goes to research to end this diseaese and makes it more well known
—ciaraski

Living with MS

Got Diagnosed at 30 - "do you want the good news or bad news - good news is I don't have MS bad news is - you do" Nice way to be told! was pretty good for about 10 years then things started to go a bit awry, forgetting common words, not being able to pick things up with my right hand (am right handed) I still work buthave not told them, do not want the pitty - I am still capable and when I forget or stumble - I am just tired. I find this easier than having to explain MS and deal with the pitty and he looks as if they are going to catch it! I find that people have no idea what it is and what you have to go through. Some days i do have to get my kids to tie my shoelaces - Im 42 yrs old - my tennage kids should not have to do this, it is the simple task which are the most annoyinging and the thing is I do not feel sick, I dont look sick things just don't work and you can't explain it to people as they just can't understand the frustration of not being sble to fo a basic simple task.
—Guest Sam

I know I have MS but no diagnosis for MS

So, there are about ten constant to nearly constant symptoms that I have and about 15 to 20 others that come on whenever including hallucinations, chest palpitations, MS hug, severe weakness (can't leave the bed), slurred speech, can't hardly speak in a conversation bcause my mind and mouth won't work together--at times it's like being in a straight jacket and somehow this jacket can do the same to your mind and communication abilities and there's so many things you feel inside but cannot share it with your loved ones. An MRI showed two lesions but my neuro considered them normal even tho she only saw one the time b4. And no MS diagnosis. Many people above mentioned that their loved ones don't seem to understand or care, of all the people in my life that I need to care the most, my husband is mostly like that. I have to beg for a hug or a single kiss. Married 24 yrs (I'm not ugly, promise) what's wrong w people? I thank God for my strong Faith in Him otherwise I couldn't handle it all.
—Guest Val

I know I have MS but no MS diagnosis

It is great to be able to read these responses. I have had symptoms for abt ten years beginning with cognitive issues and I believe it is the remitting type of MS that I have. Most of my symptoms come and go but I do have continuously the tingling in all four - arms and legs, hands and feet. I have numbness in my left side (hand a couple toes) and temp sensitivity loss at times on my legs from the knees down and continuous fatigue and stress that sometimes gets better than other times and over the past three yrs my vision and hearing have been worsening and I consistantly have depth perception issues espec when driving. All of these symptoms are constant and then the incessant weakness with not enough sleep or stress or temp changes. I just keep trying to keep up w my everyday life. I am 44 and married to a somewhat cold hearted person and we have 4 children 23-17 which half of them reciprocate my husband's reactions. I know it would help things if I just had a diagnosis.
—Guest Val

irritated

I was diagnosed a few months ago and noone understands why a 20 year old can run 4 miles one day and not be able to walk the next. On a good day I can walk with ease on a bad day it hurts my brain to.even think about running. I feel like I just ran a marathon and my muscles have shut down but I just woke up. I can meet someone and not recognize them the next day. Its so upsetting! People think I am just unobservant but I think I notice everything. It makes me so upset when people comment on how I "never feel good" I do my best.
—Guest caroline

dealing with it, and making it better

what I have noticed is that I feel alot better when I eat all natural foods and no processed foods. I have not had an issues since I started doing this.
—Guest rachael
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