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
Well, no one ever said it was easy, but
- When u r surrounded by docs like mine, that tell u for years that it's all in ur head, it can be frustrating. I was given the waste basket diagnosis "Fibromyalgia" even though I did not suffer from any of the classic symptoms. Placebos and SSRI's did little help for me also, and as a Sr in college, the cognitive dysfunction can sometimes be more debilitating than the pain. Not that I'm saying Fibro is a not genuine condition, I just feel it was used as a waste basket diagnosis in my particular situation. Finally, I switched PCPs and my new doctor is really putting forth the effort to find out what is wrong and is leaning toward an MS diagnosis. Having MS is an awful debilitating disease, but not knowing what you have and having the complete uncertainty for how to treat the agonizing pain, can be equally stressful. Many people go several years living with undiagnosed MS. Not bec the symptoms aren't there, it's that many docs r conditioned 2 think they are trying 2 get drugs or attn.
- —Guest stacey
MS
- Sometimes I lose my vision. It looks like a blue electrical spiderweb growing. I have gone completely blind for hours but usually I just can't read while still able to make out the shapes around me. Sometimes I also have hallucinations. I feel tingling that is not painful through my right leg, right arm. Like when your arm falls asleep from losing circulation or something... like that. The only "pain" is in my back. It burns and creeps, like a lightening storm under my skin. I get so sensitive that I cannot wear clothing that is tight or has tags. It all comes and goes. It sucks that diagnosis takes so long. They want to do every test except an MRI. They want to treat symptoms and make up a million different temporary ailments you can have while the whole time you get worse and worse... Docs need to wake up and listen to patients.
- —Guest guest013
Who's Holding the Remote?
- Mostly I don't even try to explain it unless I have to. Beyond the fatigue, which is hard enought to explain, I describe it as an invisible remote control. Click, it's your foot, Click, the eye, Click, the arm, Click, the brain. All in the space of a few minutes, hours or days. If I ever find out who's holding that remote, they are going down!
- —MadamDragonfly
Wondering
- I have ALL the symptoms of MS and cannot get a doctor to listen. They keep treating me for the symptoms and never really diagnosing me with anything. I am miserable and lonely. How can I get a doctor to listen.
- —Guest Kathleen
struggle
- everyone says life is a struggle. Mine is a battle everyday.
- —Guest daisy singh
Tired of explaining
- I have a neighbor who is in her 80's and she expects me to take her where she needs to go when ever she wants! I try to do what I need to do early (before 9am.)She is not even up till 11am so she wants to go around 3pm. I've told her so many times I can't, the she'll ask again what is MS? I've told her it's different for everyone! I finally had eneough and told her to "look it up"! If I had a missing leg or tumor on my head people could see it, MS is a "sneaky" disease, sometimes I think people think I use it as an excuse, but I don't like being a hermit either!My daughter wanted me to go to the beach with her and my grand kids, she said she had an umbrella, but even she doesn't realize, it's not just sun, its heat too!I wanted to go, It's been so long since i had been, but she didn't want to feel responsible if I got sick! So I'm really not included in outings either, and yes, you do get depressed and lonesome!!
- —shmarie
Brand New MSR
- I want to be able to tell people and not having them say "I'm sorry" that makes us both feel uncomfortable! Any ideas? I just tell people because I want them to understand why I sometimes walk funny, but that I am still ME! Plus the heat doesnt bother me! Can anyone explain that? Thanks
- —vicki102957
a war
- People always tell me "well, you look great" My comeback is "I may look great but I am fighting one hell of a battle inside." Wow, the most thing I miss is dancing, running, playing sports, doing aerobics, oh what the heck....I miss everything. Just to walk 10 ft is a challenge. I walk stiff as a board and no medications or any amount of stretching helps. I wish I could make the stiffness go away. If you know of anything please let me know.
- —Guest Amy
Clumsy I suppose...
- A bit like being in a hammock, on a skateboard, in a roller skate. Feeling decent, just sort of dizzy. True though, it is surely an expressive challenge for the most eloquent....Not I.
- —Guest Matt
daily loneliness
- There are so many feelings that I couldn't even begin to list them all here but I can list one that effects me emotionally. My daily loneliness. Just to want someone to come over and stay with me. Talk with me. Make me laugh. Make me forget or feel comfortable. To help me clean, like vacuum, dishes or just bring me something to eat. My family tries a lot and I love it, but there are still so many hours in the day, weeks, months that are so hard. I don't eat right because I hurt to much to cook. I leave dishes because it hurts too. I have dogs to try and help, they make me smile and laugh. They sleep with me the 18 hours a day I sleep. The dogs just don't talk with me. I try to walk with them but now it's to hot and I get sick. I'll just sleep through the summer and lonely days. Hopefully it will go by fast. I wish I could afford to hire a friend! One that didn't have to go to work, one who understood.
- —Guest deputize
finding the car
- well... no one else has mentioned the memory. I am tired....tired of having to walk out to the parking lot with a friend, only to have to push the alarm button for the car in order to find my car and realize that I parked it only a few spaces away from wear I am standing. The memory problems make for great moments in time!
- —kahena
It feels like what???
- Ive stopped explaining what I feel like to others because they either just dont get it (and really dont try to) or come back with complaints with symptoms that have to be worse then mine. I loved the way some of you explained how you feel...ditto. (weights in Swimming pool, attaching a sander to your feet etc)
- —Gardengirls
It feels like I'm sinking
- The memory loss, the depression, the fact that it took nearly ten years for a doctor to even give me an MRI despite my symptoms trying to tell me I'm merely depressed. It's an emotional roller coaster of trying to figure out who even believes me. It's a terrible thing to explain to people that I can't stay up past a certain time any longer, even by an hour or it throws me off in indescribable ways. Getting a sentence out...I know what I want to say but I don't remember how to say it. Familiar things like flushing a toilet seem to evade me as to the 'how' as if someone is playing a bad joke on me. Aside from the white spots that appear in my eyes, and the commands I give to my limbs that sometimes go unanswered my body is mostly ok for movement. Endurance is another thing entirely. What scares me the most is knowing that my mind, what makes me ME is slipping away.
- —Guest Jamie P
summers vs winters
- I tell people to imagine driving a very heavy car with the hand brake pulled. Every winter when the temperature drops below 2 degrees, the brake gets released and I can operate normally.
- —Guest Kiranne
Where did my brain go?
- I have minor problems walking. I learned from a therapist how to fake it... walk without dragging my feet or limping if I am not too tired. It takes effort to keep my gait even and more like a normal person. My mind is what I miss the most. Loosing things that are in my hand or that I had 5 minutes ago is very unsettling. I have stopped trusting myself in so many ways. Living alone keeps me worried that I have forgotten something important like paying a bill. It is embarrassing when some one asks me what movie I just saw or what I did last weekend. I have to fake it then too sometimes or give a vague answer and change the subject. I am very lucky to have a navigator in my car and a cell phone that I can use if I really need help.
- —dhreeves
1-15 of 38Next
