ms for the masses
- I feel that describing it makes people afraid, they either can't handle the idea of it or are afraid they have it or will get it....I just keep pushing on, that's the best any of us can do...
- —Guest jijo
I miss me
- MS has robbed me of myself. My once amazing memory is all but gone. I can't make a decision as simple as which washcloth to use on my face! Vertigo has me afraid to walk out in the open where I wouldn't have anything to grab onto when the world starts to spin. The eye pain is unbearable and I am embarrassed of the tremors. Food is nearly tasteless..and I love to cook! I lost bladder control during a 5k run last summer crossing the finish line is soggy shoes. I have learned to conceal my wobbly gait and can still run..for now...but the fatigue and insomnia is making that more difficult everyday. I have told no one but my therapist and I can't stand the look of pity on his face sometimes.
- —Guest Beth G
The Old Me
- I feel the same way. I used to run up and down subway stairs in heels. Now I am secondary progressive and am in a wheelchair. I sometimes am able to walk with a walker with wheels, but it's getting harder and harder. my back paiin can be unbearable at times. I can't concentrate on my job any longer and am afraid they're going to fire me. I hold on for the health insurance. I am scared because I can't even stand on my own. I am so scared and just want to cry. My doctor has me on celexa and it's worked for years. Now I don't think it's good any more. I am single and live alone.
- —Ellenska
Something I never knew...
- That was a very informative view into what the disease really is. For someone who doesn't have MS, it's trly shocking to see what people with MS go through on a daily basis. I think more people should read this so they to can not only educate themselves, but be able to be more supportive of those who do have it.
- —Guest Eve Nightingale
Symptoms an Athlete could relate to....
- On Tues, my symptoms included feeling as if I were punched in the gut and stabbed in the butt. This all occurred during my 80 minute lecture to my graduate students. I wonder if they noticed.
- —Guest Prof Julie
MS feels like
- Chronic daily pain. Like many have said imagine having 100 lb weights tied to your legs. But with mine i'm in extreme daily pain much of which I didn't read too many people talk about only some. Mine feels like shards of bone jabbing up inside my legs with each step. There are also feelings of deep aching in the legs, hands and forearms. It hurts just to turn over in bed at night. I get a searing ripping pain in my legs. It's even hard to make it to the restroom in the middle of the night. Mornings are my worst time. I can't even move then and just go from the bed to the recliner and have someone bring me coffee and breakfast and take pain meds until I can move. That usually takes about 2 hrs. I have also had electrical surging feelings in my spine and head. I have restless legs at times and sometimes feel that same feeling in my arms like they need to jerk or move. It is a horrible life. Like many said I wake up alone, my days are alone and I do what I can in a day which is not much.
- —Guest Kindal
foundation undergarments
- I have told people imagine wearing those undergarments you wear under a formal gown, ex. prom. now imagine never being able to take it OFF. Also, for me it is like a normal person having had 3-4 drinks. Just kind of off center. My daughter says I type fast, I laugh because the number of errors now is horrendous. This just bites!
- —jlfcf
You Look Fine...
- I am to the point where I don't say anything about my MS and just say I'm fine. I got so tired of the "Well, you don't look "sick"! or "Really, I have that same trouble, I think I have MS too". Hey, I'm not saying that you don't have MS dude, but why ask how I'm feeling if your just going to ramble on about yourself and ingore me or try to get all of MY attention on you! Helloooo? I sometimes try to explain what it feels like to have MS and most of the time, people look at me like I'm crazy, like I'm making it all up. I have started carrying the free literature I ordered off of the National MS Society library page around with me. It helps me from speaking so much...since I lose my words or stutter anyway! But hey...I LOOK alright!!!!!!
- —Guest JQuick
UGH....
- Dec.17,2009 In the a.m. it takes 1 1/2 hr. or so for me to take my shower and get dressed then apply mascara: slow and easy wins the race. What really helps my walking is my new AFO..it is from "DYNAMIC WALK".. search for it on the web.. it is so much better for me than the hard molded/fitted AFO. (You all might want to ask your Doctor and p.t. about this to find out if it right for you.) I get tired alot and haved developed Restless Leg Syndrome but with the right medication this has been curbed alot. Very cold winter weather and the humid summer has kept me in the house quite a bit making me lonley at times. I have a wonderful Sweetheart that is with me all the way and I thank God for him very day. There are a few friends/relatives that I have who accept me for who for who I am. All together, if I keep a positive attitude half of the battle is won! ~*~ Holiday Happiness to Everyone! ~*~
- —Guest bouquets
getting on with it
- Its been hard. i've had 6 relapses in 14mths.i've tried rebif, tysabrai,alemtuzamab which is only still a experimental drug in ireland and was the 5th person to have it.Just had another relapse which left me with no sight for nearly 3wks.Basically i feel every part of my body has been effected at different times.What's it like to have MS?That's what i was asked only yesterday and i can honestly say it wasn't the worst question i've been asked. But strangely enough i found it very hard to answer.So i went quiet and then changed the subject.Silly i know but hey after a while answering questions really does get on your nerves.What could i have said - well let me see it's painful, i'm tired all the time, i can't stand after i sit for to long, my back aches, i have killer headaches and so on. And what response would i have got? LOL!!! "oh i know exactly how you feel."But i guess at the end of it life has to go on.MS is not nice, it can make life hard but thats what friends and family are fo
- —Guest Karin
How MS Feels...
- When trying to convey to others just how it feels to have MS is somewhat difficult, but I will try. When you get up from your computer chair and you attempt to walk, you feel just like you do after riding a horse for several hours/days. (stiff and sore in your lower back and legs) Your first step is almost like your first step when you come down from the saddle or off a boat (very unsteady). Dressing for the day is interesting because you no longer wear sleeves nor pants because you are always feel hot (as if you have severe sunburn on the INSIDE of your legs, arms, back, etc. When you eat, you can have a hard time swallowing, and can even choke on your own saliva. When you sleep, you get up and down sometimes every hour on the hour, so getting a full nights sleep is pretty much impossible. When you go out , you see how rude people really are. Even when using a walker or a cane, people will bump you, cut you off or just be rude to you because you are walikng too slow for them.p
- —Totally_Blindsided
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
the past 2 years for me
- my ms has not been very bad to me yet most of the time i do not feel well like head akes and back pain and a lot of the time i wont to cry but i do have good days also for the most part my good days out number my bad
- —Guest patricia
Claytons MS
- My MS is difficult to explain because it is not there most of the time (thankfully). This makes it difficult to explain the 'invisible' symptoms like fatigue & poor memory or concentration. People just think your using it for excuses.
- —Titch63
