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
DEN
- I realize I am much luckier than most. I have RRMS. Optic Neuritis is my main foe, it never seems to remit and my vision is often compromised. I hate the glare of the sun. To those people that have trouble finding a good doctor, just keep trying until the right one comes along. I had one doctor that stood up and opened the door for me to leave. I was obviously having a relapse as I had been to see her two years earlier. She did not and could not help me then either. When I told my new doctor that I was having blurred vision an appointment with the opthalmologist was made. The tests she ran showed immediately that I had Optic Neuritis and that this was the most common sign of MS. MRI's followed with many visits to specialists, hospitals, blood tests and so forth. It had taken me 8 years of believing I had chronic RSI to finally get the right diagnosis. The good news is we have a brilliant government that pays for our medication and Stem Cell Research is coming our way .....fast!!!
- —Guest DEN O'Connell
MS Nightmare
- MS is the worst nightmare ever. Wake up in the morning and the first thought is 'another day with MS'. You wonder what the day will be like, good or bad, will I be able to walk today, will I fall, will I be able to do the laundry or make dinner. Then you can't concentrate, frustration sets in and you sit and think to your self 'if I could just go for a long walk with the dogs like I used to when I needed to get fresh air and clear the mind' but you know that will never be.
- —Guest pammie
I stole the spoons too...
- Great analogy...great website, great author (Lorna)...butyoudontlooksick.com. I'm going on nine years, am 35 years old. I love the analogies here, all of them adding something...only...and I'm sure all the MSers agree...not right....I've used several analogies myself: when my feet get "numb" (which is funny to me, because it's never really numb in the healthy person sense...), it feels like walking barefoot over metal grating. I like the wet jeans one...I could also add that sometimes your skin feels like wet jeans...you can touch it, and then not quite feel it, like it's really thick. I feel like i have a sunburn on the INSIDE of my legs...all the time. And I tell people to imagine walking for about 7 hours (like sightseeing)...that's about what fifteen minutes feels like to me. Your legs just HURT and ACHE and you could crumble to the ground.... All of these are correct. The memory and anger are a killer too...
- —Guest amy
Random - but I'm still me.
- I try not to frighten people - some might get upset for me, some might back off like it could be contagious. So instead I just list the big issues (balance for me), and I try to explain that sometimes it seems random... I might wake up one day and feel like my right forearm is disappearing. But then it comes back after a week. As long as I keep it in the back of my mind, I know to slow down and be careful with myself. Most importantly, I am still me. The personality that I had before is still there. Same odd sense of humour, and I never wanted to be a juggler anyway... so no loss there. Most people understand that I can't run across the road, I need a crossing. And if I hold something out to them, like a closed jar, that's means I need a little help.
- —Guest Lynne
My walking...
- Is my most notable symptom, walk like drunk...When my friends,family, ask what it feels like to me this is how I explain it...for me to walk is like you ( a "normal" ) person spending their day from the time they get out of bed until they go to bed trying to navigate their day what ever it is they do as if they are trying to do it on a trampoline. Exhausting,clumsy,frustrating, and ,yes even embarrassing. When you are a kid or even a healthy adult, it is fun but still tiring if you have to do it every waking moment. That is.. My Walking.
- —Guest LaVonne
I'm a live-Song of celine dione
- day by day hour by hour think way I become like that the answer is god like me and he want to her my voice begang to him pray do good thinks let every one around me liks me and remeber the good stuff that i have done in me life see the good things think of good thinks and together we can move on
- —Guest Shaima
It's highly frustrating!
- I live in a country where very few understand MS and there's no applicable law to protect the rights of the disabled, either. I live on my own and my family is on the other side of the world in the US. They are trying to get me there, but, it's taking AGES and I just hope and pray that it will happen while I'm still moderately mobile. Most of my symptoms are not very visible, like hearing impairement, functionally blind in one eye, balance problems, bladder frequency, etc., and the only visible thing is that I need to use a stick and where possible a wheelchair. This last is not often, since I live on the 3rd floor in a block of flats which has no elevator. My neighbours, also, are some of the most thuggish imaginable who derive warped pleasure in harrasing me. I've been trying to find another place, but, housing in this country is a big problem - especially low cost. The only thing that keeps me going is my friends and that others are worse off than I. I fight for my rights!
- —Guest Raziya
What it feels like to have MS
- I do not know what to say the symptoms keep changing stress is not possible to control wish it were. all my family tries to help and want me to forget what I feel and then it won't happen like pins pricking me in legs and arms, uncontrolable pladder holding power, tired walking can be an effort causing ache that mekes it hard to go on. fall left foot sometimes seems to stick hand gets numb and foot also.vision double looking left and moments just looking straight ahead. Moments like no MS at all but doesn't last.coughing slurred speech poor handwritting that was once good. I can't believe what has happened as this is wuch a change from what I used to be full of energy able to accomplish so much just losing it.....
- —Guest Beverly Flankey
I'm ok
- I feel alone, angry, sad, teary, tired, embarressed, exhausted just from trying. Thats on a good day. Don't have any family around, partner works away and expects everything to be the way it used to be. He doesn't understand (or care) that I'm tired and can't go out and do the things he wants to do. Makes for a strained relationship. When he askes how I am, I say "I'm ok", just too hard to explain that my body won't do what I want it to do. Sometimes it's too hard to find the words to say what I am feeling. My symptoms change from day to day, hour to hour. Each morning I prepare myself for the challenges this horrible ms is going to throw at me for the day. Its just hard work getting through the day. Looking forward to a repreive so I can have some fun. Hate the heat, stuck inside. Bring on winter.
- —Guest Aussie Anna
how do I feel
- I don't complain often. I lost my voice due to spasmodic dysphonia, so that has really done a number on complaining. Sometimes I can't hide the headaches or the lines that appear in my vision. It is very visible to everyone that I have problems. Walking not so good, talking not so good. Hand writing not so good. Sometimes I just cry because of the injustice. I try not to do that in front of people, and the dog has adapted to it he used to kiss me every time I cried. He is 13, and not worth the effort to get up and give me a kiss. I hope no one feels sorry for me I try to use humor to off set any uncomfortable feelings others may be feeling. I am not the same person I was 18 years ago and never will be again. I think when we truly accept that , people around us accept it too. If they don't who cares no big deal, we are still valuable members of society. I am sure not every one liked us before, and being sick doesn't change that. Just like yourself.
- —Guest angela
What does MS feel like?
- Imagine waking up, having a tight hug around your torso that never releases, therefore making it difficult to breath. You wake up extremely fatigued or tired, as though you have worked out extremely hard or run a marathon, and you have that feeling all your waking day. It's like someone has a voodoo doll of you, and they choose, minute by minute, whether to stab different places with a pin, giving you immediate pain, or pinch a place, making it numb, etc. Imagine your body as running on electricity, and someone throws your main breaker, so you begin to fall, then before you fall down, they throw the breaker back on again. The tremors, shaking of your hands, feet, jaw, and torso, make you feel like you are having your own personal humanquake. You have severe nausea, you never feel hunger or thirst, and you cannot taste foods very well, anyone hungry? Cognitive thought, multi-step tasks, are near impossible. Short term memory, short circuited. Walking is impossible without help.
- —Guest Stan
Never Been Diagnosed
- I have had MRI's and nothing shows, but the worst symptoms I have are much like what everyone describes. It feels like I've got a 100 pound brick tied to each leg, so not only are the legs hard to pull but also the hips and back start to ache severely from the pulling. Can't walk more than 1-1/2 blocks without having to stop for awhile. Very painful. Am beginning to wonder how many other diseases like MS are surfacing, especially after reading about the damages gadolinium does. Have a pituitary tumour so have been injected several times for MRI. Wonder how many of you have also had gadolinium. injected into veins. You might want to watch some of the You-Tube videos on that. Mind you I also do have advanced osteoarthritis on one part of my spine too. MRI showed that, although bone density tests still come up looking normal. Did read, however, that when spinal deformities are bad, bone density tests are often inaccurate. Also have stenosis/sciatica worsening monthly!
- —Guest Julie
What does it feel like.....
- I have PPMS since 2003. I try to explain in terms and sensations others may have already experienced. Like for the spasticity that I experience any time I move from my wheelchair to another location, I ask "have you ever sat cross-legged and then stood up quickly?". Their answers are yikes, that hurts and you go through that all the time? Having lost the use of my once dominant right hand, I ask "Have you tried writing with your other hand?" You know most everybody's response. So I try to relate my issues to common similar but unrelated to MS things in people's lives.
- —SuperSM
Well, You Look Happy
- I've read many of the experiences here and what stands out for me are the people who can't get doctors to listen to them. My symptoms keep worsening but no one is listening. I have a numb right foot and calf and tingling/jolts in all four quadrants. When I asked my neurologist why things were worsening, his response was that I seemed happy. I feel as though I'm losing parts of my body and can't get anyone to take this seriously.
- —Guest Athlyn Green
PAIN PAIN PAIN
- I miss my high heels, my running, my working out, my coming and going without effort, my beach and tanning days - where do I begin???? I miss walking without limping or lurching or trying to find a wall to grab (or grocery cart) - I miss so much I can't believe how for granted I took things but the thing to most remember is I am breathing even though my one leg from the shots used to take has a paraylzyed spot that aches so bad I want to cry every day - anyway, I am glad to be alive - I am blessed with my parents, family and friends - I am MOST blessed to be working and with great co-workers - wonderful! So even with all the horrors of MS, there is so much that I did not even realize and took for granted - now at least I realize the blessings I have that I never stopped long enough to realize but man, I sure wish I could do everything again with the knowledge of all I have!!!!!!!!!!!!!!!!
- —Guest Kathryn
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