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

Responses: 217

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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... Share Your Ideas

How does it feel to have MS

I was diagnosed at the age of 55 with ms. Try running down a hill and suddenly stopping. This is what I feel like every day.
—Guest Valerie

MS is no big deal

Having MS hasn't slowed me down one bit, sure i have vibrations in my body, i have back pain and my right leg is half paralyzed. I get tired very easily and i have to save my energy or pay ahead which means i rest when i know i am going to do something later. Its like i have a bucket of water or energy and i have 12 ladel fulls of energy per day, so i dip out when i want and how i want but when i run out, i am exhausted. The heat affects me too, so no long exposures to hot days. But i was able to retire early and am writing novels and each day i am grateful that i am alive. MS is no big deal. Sometimes at night my midsection just vibrates and it feels like i am on one of those hotel vibrating beds, but i just go back to sleep it is what it is.
—Guest SmartyPants196

Molasses

I was diagnosed with MS a year ago, after so many tests, I forgot what I was even tested for. Almost a year, two more flares, 3 MRI's, and a medication upgrade later, I feel like I'm made of cold molasses. Stand me up, and watch me melt slowly onto a nice cool floor. Good days, bad days, great days, sad days. The great pretender. MS doesn't always wear itself outside your body in the way of a cast, neck brace, wheelchair, or assistive device. A person can look at you and see nothing, leaving the question 'is there even anything wrong with you, cuz you look great to me' Fatigue, vertigo, mash potato mouth, soupy thoughts, tingling, constipation, loud noises, loud people, bright lights, poor balance, lack of libido, trouble swallowing...I could go on, but im running out of characters and energy. My mother cries 'I wish I could take this from you my dear daughter.' ...I nod, and give a slight smile and inside my head think 'I love you mom, but if the roles where reversed...I wouldn't.'
—Rampino

Wow, does anyone feel me.....

I have been dealing with pain for 10 years slowly losing my job, depending on family gaining weight from depression. No energy bad cramps in body (all over) can't concentrate. feel like giving up. I guess since I have found this site I am going to a neurologist as soon as possible. I use to be a photo-writer. I miss it...... I can't do this much longer. Good to find all of yopu. keep going!!!!
—redbomb

just lost

It has only been a couple of weeks since I have had a diagnosis ..but my hands and feet has been numb going on 3 mths now.I am feeling different things don't really understand what is going on.At times my brain get this funny feeling or I have to stop and concentrate to realize and grasp what is going on..about to start the new Med Tecfedera ..I am speacking into assistance ..God is going bless us all and by the grace of God "we are going to be alright"
—Guest jrc

jky

understand i have had iv steroids for a week and had to learn to walk -swallow-write-eat get the words right. GOD BLESS
—Guest jennifer

m.s. is an adventure every day

I have decided to call and explainto others as M.S. is an adventure every day, you never know where or how it will start and have no clue how it will end
—Guest kerry

Thank you

Perfect. Exactly how I feel right now trying to study for my PhD. My advisor has successfully convinced others that I am lazy and inefficient. This made me sad that my feelings are not just from being a harried student but are my MS. I know they are, deep down i always know, but others can't see it, so I feel guilty and defensive all the time. I sent this to my family and my mother read it. I hope others do to. I hope they don't think it is for sympathy I fear they will. It is to get understanding which one hopes will bring relief. I was told recently "where is your I'll show-em spirit'" in response to school. I said well, I thought I was by starting my phd at 39, having a baby at 40, continuing research and school in a new city......
—Guest Krista Kutina

Just keep trying

I was diagnosed about 10 years ago at age 46. I knew something was going on for years. I have been on Avonex treatment since the diagnosis, and the treatment does slow down the progression of the disease. I have learned to rest everyday and I rest in anticipation of any events I want to attend. I taught school for 33 years, just retired, and still trying to stay busy. Again, keep trying. Adjust your life, hold on to railings, watch where you walk, etc. Most important, rest. Rest.
—Guest Mary

Sucks to be me

Yeah ok. 5 years of stupidity going from neurologist to neurologist trying to get a proper diagnoses. Finally had to change jobs because I could no longer perform the functions I was supposed to (and loved) to do. All function of right side arm and leg severely degraded. Walk stupid, even with my new cane. I can't hold anything in my right hand, vision gets weird several times a week. The fatigue is ominous, I can't remember a morning where I awoke ready to meet the challenges of the day. I work with my hands, my eyes, and my brain. This is the worst thing that could happen to me. Oh well, at least I don't have breast cancer or aids.
—Guest Michael Norwick

Question

How to deal when family and friends have pulled away from you. My neurologist said it happens but didn't think it would happen to me.
—Guest June Selvig

Walking a tightrope

You are having a good day and think you can handle this MS then something will happen like fall, dropping a drink, etc. and all those good thoughts are erased....you remember a beast is behind you on the tightrope.
—Guest Pam

Always in pain with a smile

My Dr. believes I've had ms since 1998. I was perfectly fine until about 2 years ago. I am in constant pain. I don't think my neurologist quite understands. I love my job but had to be out 4 months & am back only 3 times a day. I barely make it through the day. To top it off I also have chronic Uriticaria, which is chronic hives and HORRIBLE. Everyday I was waken by an awful itch and my body full of huge hives. It's much better now but still there. So those meds make me tired when I am on meds for my awful constant fatigue and the usual pain meds make the hives worse. So now I have no good pain meds and am a zombie. Between the pain and fatigue I don't know how I get out of bed or am even able to walk n move around. But I do and do it with a smile. Thankful that at least I woke up and have one more day with the people I love :-)
—msnconstantpain

Positive thoughts

So my life's not what it used to be , but who's is , so now I really need to plan every day ahead ,walking distances , toilet breaks and working around my energy levels ,its most Likely that our good day is most people's idea of a bad day , but everyone has them , so I refused to give up my job as a carer , the people I care for have all sorts of conditions, many in wheel chairs ,these people are inspirational and make me realise that life goes on regardless , im done with being frustrated ,embarrassed and no longer make excuses for my condition ,it is what it is ! ms dignosed 5 years symptoms 17 and pernatious anemia x
—Guest Les

Numb, tingling pain & weighted down

I was diagnosed in 2007 but had symptoms for 30 years. Since I went so long without treatment, I have just about all ms symptoms (numbness, pain, vertigo, constipation, urinary problems, cognitive issues, optic neuritis, heat&cold sensitive, breathing problems and more). I best describe my condition...The muscle pain & stiffness is like briskly walking the distance from airport parking lot to plane while in water up to shoulders, fully clothed, wearing tennis shoes, while carrying a suitcase. I'm sometimes tired before I start my day. Walking has become a problem. My stiffness (spasticity) feels like wearing an x-ray lead suit all day, whether sitting or walking. For those who don't understand how I could be numb yet feel pain. It's like being outside in freezing weather without proper attire. Once inside before warming up, you experience pain, numbness, stiffness & heaviness. Legs aren't cooperating well & hands not grasping as well. But with MS, these feelings never change.
—Guest Patricia

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

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