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  • Andy_Brickell
    Hey everyone - 
    my spouse has SPMS and is struggling a bit at present, but I'm actually seeking your input for something different.  I'm the fundraising coordinator for an MS150 bike team, and I want to promote rider fundraising by making things more personal.  I'd really appreciate your thoughts on how MS affects you.  I'll post them to our FB page and hopefully that will get people focussing on what's really important.  I hope I'm not violating any privacy rules, if so please let me know if I am Ms/Mr Moderator.

    Thanks - 

    Andy
  • anywhereoutofthisworld
    I thinks the question should be how does MS not affect me? It's the invisible illness that is anything but invisible to those of us who have it. It is stitched into every fiber of out beings, well at least in my case it is. The best way I can describe it is, imagine waking up each day wondering what symptom of your MS you may be battling. It's unpredictable, it's at times even undefinable, but by all means, it is always there. It never leaves, and those who have it, know this. All my symptoms I describe in my profile I could have on any given day. Amazingly, almost no one who encounters me would ever know it. Nothing fair about that, no one cares either, or they don't seem to. It's cruel, it's obscure at times, mostly though, it just is what it is.
    As for a lot of MS medications, this quote comes to mind:

    The remedy is worse than the disease. - Francis Bacon

    and when it comes to living with MS in general, this quote comes to mind

    Not all wounds are visible. Walk gently in the lives of others. - anonymous
  • april9517

    I agree with anywhereoutofthisworld, it really is how does MS NOT affect me. I can feel it everyday in some kind of way. It makes getting up harder, all I want to do is sleep, but when I need to sleep it makes it hard for me to fall asleep. It affects me at work directly and indirectly. I look perfectly healthy, so when I say I need an extra break (which is usually just the breaks I never take) or am going just a little slower, coworkers who don't undestand just think I'm being lazy. It affects almost every decision I make. How far in advance should I make plans? I dont know how I am going to be that day- this weekend for example I had a trip planned, but I can barely walk without an excruciating amount of pain lately. I am planning on going to PA school if not Med school, am I going to be able to handle the stress, the demands, and if so once I have reached my goal, am I going to be able to do the job. 

    Good news lately, is fantastic news, I treasure every good moment- however bad news lately just starts a plummeting cycle back into the depression I have fought since middle school. So much as me not being able to take a tv stand off my tv has made me start bawling (I blame the medication for that- or thats what I tell people)

    The constant drs appointments, and lab work, and who knows how many needles have entered my skin in the past year with IVs, blood tests, and my medication. I always have some sort of migraine at all times of the day, my legs like to give out without warning, I can barely feel my right foot and have recently discovered its the same with my right hand. Some days it is hard to drive, my vision gets blurry and I am dizzy a lot. 

    Its a terrifying disease to me, I could go my whole life being just as I am right now, a few flares here and there, or I could get way worse, and if I get worse WHEN will i get worse. Will I wake up tomorrow not being able to walk or feed myself or will I wake up in 30 years like that. That is probably what affects me the most- the fear of the unknown. I can and do ignore it and get on with my life and trying to enjoy it and grow in it, but there will always be those random moments I am all alone with nothing but my head to listen to that those thoughts trickle in. 

    I am 22, Besides the people I have met here, I dont know anyone personally that is my age who is going through this or anything like this, which can be hard not being able to share experiences with people who are in the same stage of life as I am. I definitely agree that the question is how does ms Not affect you, because there are so many different parts of your life that it does affect. 

  • capitolcarol

    april9517,

    You are absolutely right about how MS does NOT affect you.  This is something that we have to live with 24-hours a day every day.  And MS affects people in very different ways.  Plus we can never really tell others what our MS lives are like.  I don't know anybody my age or actually anybody else that has MS.  
  • Nron
    Its truly a stuggle everyday and night for me. I have migrains where im paralyzed with pain. Numbness where i dont feel tempiture i have scars from 3rd degree burns when i didnt know i handled something hot. I cant walk very far most days my legs would give out or my lungs would feel as if they exsplode. At night i wake up cant move but its as if im dreaming my doc says i have night terrers and it happens more than just at night. I cant deal with noise but my ears ring out at me when i just want to have peace. At first i thought i was loseing my hearing but it not constant its kinda comes and goes witch throws me off. My balance is not what it use to be i can hardly walk straight and i get dubble vision or lose vision in one of my eyes for a while. I get random twitches and spasms in my face and my back where it feels like electricity is running threw. It makes you want to scream out. Then there is the memory loss and forgetfulness oh its upsetting not being able to find the right words to lose what you say in the middle of saying it. Its frightful to take meds and forget and take more over and over again. 
  • gabrielle519
    Hello,
    I don't think there is ever a time or moment that MS doesn't affect me. It is invisible. When people see me they would never think I have MS. Maybe I walk with a limp on occasion.

    I wake up in the morning after 8 hours of sleep and I'm usually still tired. I get out of bed and my legs are stiff. I feel like a zombie. This morning I stubbed my toe fell over. Then got up walked to the living room and the pain in my stubbed toe sent a signal to my leg to stop from the pain and I fall over again sitting on my coffee table which collaspes as the legs fall off. I start loosening up as I wake up but still walking with a limp. Go out to my car take the snow off. Taking breaks in between to prevent myself from getting to fatigued. Then I get to work. I have a long walk to my job site. I have pee but there is no restroom so I have to take a pill to prevent myself from having an accident. I finally get to a restroom. I start working and as I'm walking down the hall my foot that drags gives me a hard time. I trip but caught myself and didn't fall.

    Some days I feel it more than others. Today was a good day actually. After all that today was a good day. I mean but that it is only part of it. I feel depressed and anxious sometimes. I have mood swings that make me go from 0-10 in 2 seconds. I have to take frequent breaks to prevent myself from falling down. Sometimes I get restless leg syndrome. Then my legs start aching because of the movement. I get horrible muscles spasms that cause a lot of pain. It just is always there. Now I have had a lot of time to get used to the symptoms and learn to cope with them but they never go. Thanks Gabrielle