From the article: What Does It Feel Like to Have Multiple Sclerosis?
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... Share Your Ideas
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
never give up
- M.S. has effected my walking,have to use a cane.I feel soon a scooter will be appropriate ugh... Its also strained my marriage but GOD says im beautiful and never give up, have FAITH were in good hands
- —Guest sandra vincent
diagnosed 2 47
- almost impossible to explain to friends and family , the constant back pain , numbness in the limbs , problems seeing and writeing ,just buck up I tell myself and learn to walk a straight line , at 47 I see how important the little things in life are !
- —Guest smitty
MS PAIN
- I try not to think of the negative reality of my life and always have something positive to say to encourage someone who has MS but waking up in pain and going to sleep in pain will break down your spirits. The pain in my legs is extremely bad and then I have pain in my left arm and my hands. When I hear a family member tell me thats odd I know someone whose mom has MS and she has no pain. There is only so many times you can tell them everyone who has MS does not and I repeat does not have the same issues. Some people dont have any pain I wish for one moment I could be that person and I wish for all of thoses who think there is no pain with MS could have mines for 1 hr I dont think they would be able to handle it.
- —Guest K
I don't bother any more
- I went through a stage where if I was asked, I'd be honest: I feel like hell, I'm exhausted and all I want to do is sleep, I feel 'wound up', I'm hurting... but I don't bother any more. I'm viewed as lazy or attention seeking, if my cog goes I just mumble about having a bad day. I'm already starting to be viewed as 'anti-social' because I don't want to go out on a Friday night. I've just struggled through a whole week of up to 10 hour days... with hugs, headaches and failing cog... give me a break.
- —Guest Serika
Heavy legs with zero power!
- I am asked a lot. Freinds or family: "I know you say your legs feel weak, but how does it feel, what's it like?" I tell them: "Get into a pool and make sure the water level is at least up to your waist or chest. Now try to walk 20 - 30 feet AND DON'T SHRUG your shoulders, and don't use your body to help you through the water, ONLY USE YOUR LEGS with your hands at your side. Oh yea, one more thing, time yourself and when your done know that this is how it feels for me to climb a full set of stairs when I am not doing so well".
- —Guest Tom Schwindy
just diagnosed-now what?
- I'm 31 years old and just got diagnosed with ms 1/4/2012. Fear of the unknown is the worst for me. I have had no energy for the past 2 years, I walk like I'm drunk and my hands shake like I need a drink. I got diagnosed because I got optic neuritis-totally lost vision in my right eye. Talk about scary. I thought I was going blind. I feel like a time-bomb now. My eye is better but I feel so scared about what the future holds.
- —Guest nikki
why me
- I was told I have ms about 7 months now and its the worse thing ever. Your always tired.aching.depressed the list goes on worst of all your unable to interact with your children like you use to sometimes your to weak to pick them up and hold them to let them know how much their loved now if that isn't pain what is it.I was raised to not question the almighty but may I ask why me?
- —Guest levinia
What does Multiple Sclerosis feel like?
- It is so hard to tell people what it feels like to have Multiple Sclerosis. This is my verson; Today: I feel numb all over, touching my skin, it feels like I'm touching someone elses skin, it will be easier today to give myself a daily shot of Copaxone, should I inject in my arm or my leg today, oh boy, I can't wait.. I'm in constant pain, head, neck, back, sure I can take pain pills, but if I do, I might as well just stay in bed & pull the blankets up over my head. Will I be able to relieve my bladder & bowels today? Will I be able to see today? Can I drive to town today? Mornings I have energy, but in the evenings my body is worn out, I just want to hang up my head, neck, back & legs on a hanger so it won't hurt anymore. Knowing that I can't travel anymore, saddens me so much, my husband & I had so many plans to travel, to see things together. I never thought I would be disabled & home bound. We have 4 beautiful granddaughters & family that I would love to go visit.
- —Guest Susie
What My MS Does to Me...
- I have no energy. I cannot think clearly enough to figure out what to do each day. I have lost my ability to seemingly motivate myself to do anything. I can walk, however I just sit all day, doing nothing. My life is like a living hell. I cry allot. I laugh too much sometimes at things that are not that funny. I say inappropriate things when with others. I do not enjoy doing anything anymore. I do not enjoy being around others because I am so unsure of my ability to carry on a intelligent conversation, without forgetting the point I am trying to make or feeling like I am playing a game of "Suraids" with whomever I am talking with. How much longer do I have to go through this life just existing and seemingly unable to have "a life"? It's like being sentenced to a life in prison without a chance to appeal. It is mentally, physically, and emotionally torturesome. I keep having problems with herniated disks in my neck, mid and lower back. My arms and legs are weak and numb.
- —Joyce114
sad
- Ive had ms since 2004,I am now 28.I work full time I am a mother of 3 children all under the age of 8.I just started copaxone less than a year ago I was having way to many exacerbations.i have walking issues which i deal with by rrsting as much as possible.to be honest thats really the only symptom i presently have.when I do to much I walk like im drunk.I do not attempt to run because id look silly.past exacerbations have been horible tight bands around my chest,inability to move my legs,unable to write.after small course of steroids its all gone away.I still have balance issues but other than that u wouldnt even know i had ms.I try to live by the motto I have ms but ms doesnt have me but i cant because it really does have me nomater how much i try to deny it i cant alsoits true when they say u only realize the little things in life when they suddenly stop.i keep my head up rest ophten and try to be as active as ican be.everyone be well...
- —Guest doris
What is MS?
- A monster. A monster that trips you. A monster than pushes you down with all their force. A monster that eats your eyes while waving their hands in front of them. A monster that pushes you, and watches you fall. A monster that is attached to you, tortures, but ultimately humbles you.
- —Guest A young man
HOW DOES IT FEEL
- My son was diagnosed a few months ago with MS......I have tried to educate myself so that I can support him better. There are over 2500 miles between us....so mysupport is in daily phone calls and prayers. I can't imagine how it feels......but reading posts on a site llike this helps alot. One person said its like poker....don't know what "hand" you'll be dealt for the day. I have gained alot of knowledge of this disease and pray that there will be a cure. God Bless all of you with strength and patience in dealin with this.
- —Guest MOM OF SON
yikes
- Suppose you were to go shopping on Black Friday beginning at 11pm the night before and visit 3 different stores and walk the entire store, front to back, at each store. Imagine carting around 3 heavy bags full of items. The music in each store is so loud you can't hear yourself talk and it is so crowded that there are wall to wall people jostling you around. Then imagine having to use the bathroom but you can't because you don't know where to even begin to look. Also, your children are screaming at you and you can't locate your purse. Multiply that frustration by 100 and you have the beginning of understanding my frustration level of an average day for me.
- —sally.christman
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