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  • October 12, 2011 at 2:35 am #6446

    KaylaS
    Participant

    Hey everyone, I know its been a while since I’ve been here and talking on here. school new drugs, scared about the first dose.. yea lets not go there.

    so I have a couple questions for one Aaron, and two everyone else so here we go;

    Aaron: when you’re out of town on a tour, how do you manage it all? like when you have a relapse do you do things differently? or just try and push through it all?

    Everyone else: what are you most common symptoms of a relapse? like me for instance I get optic neuritis and numb hands and arms. and I’m really just asking so that if something happens I might have a better idea on what I could do to make my relapses a little easier

    October 19, 2011 at 3:02 am #6814

    AdamM
    Participant

    Hey Buddy Kayla,

    One thing I notice about every1 with MS is that it affects everybody differently. For example I had MS for 5 years now (tons & tons of relapses lol) I can call my relapse easily now because what usually happens is that both my legs get super numb. like to the point were its uncomfortable, Also I start feeling pain on my Left leg and I can barely walk. As soon as I notice this I call up my doctor ASAP and then have to head to the hospital. They just set me up on a IV for 5 days feeding me Steroids and that usually gets the job done.

    October 20, 2011 at 4:35 am #6815

    KaylaS
    Participant

    See thats why i’m asking, i know its different for everyone and mostly i’m just trying to find a way that could help me with my relapses.

    October 20, 2011 at 5:52 am #6816

    Anonymous
    Guest

    I am new to managing relapses as well and so I am not sure what’s best either…..so far I have tried to maintain the most normal activities through them that I could manage with extra rest. I don’t know if that’s the best way to manage but it helped me not continuously focus on the headache (my last relapse) although I wasn’t efficient or as productive at tasks during the relapse. My neurologist hasn’t suggested any extra treatments through my relapses (he and I have only been through 1 together so far)—I just have to take my regular MS meds and ride them out (last one was about 2.5-3months long). So far I have had weird sensations in my side (~1 month), numb feet (~1month), numb legs (~2-3months) and headaches (2.5-3months) as relapses. Numbness for me has been easier to manage over the headaches (because I don’t lose function of my limbs) so far–I am guessing that may change in the future but ??? since this is such an individual thing.

    I think we all figure out what works best for our situations as time passes. I am trying meditation as a means to cope during the difficult periods. Its great for your brain (check out some of the science behind it) and its something small that I can do to help myself (just started this so we’ll see how it goes).

    October 21, 2011 at 12:45 am #6817

    prisoneroftoday
    Participant

    For me it’s tremor, muscle spasms & contractions, and fatigue. The easiest one to manage for me is the muscle problems (cold packs, massage, stretching, and now a prescription for muscle relaxers). The tremor I just kinda have to get used to (ex: avoiding glass cups, drinking with a straw so I don’t have to hold the cup, using a dictation program instead of typing). The fatigue is the hardest one, really not sure what to do about that one. At this point I’m just more used to working around them instead of fighting them off.

    October 23, 2011 at 5:12 am #6818

    Anonymous
    Guest

    I skipped the fatigue in my post….I agree its a hard one to deal with during a relapse or the chronic remnants of the relapses. The hardest for me is not knowing what is coming next in the future–what the next relapse is going to be and when its going to invade my life.

    October 23, 2011 at 11:21 am #6819

    Michi
    Participant

    I totally understand what you mean Tracey and because of this we have to enjoy every single day, hour and minute, because we don’t know what comes next.

    Best wishes.

    October 23, 2011 at 11:27 pm #6820

    F.U.MS
    Participant

    Hey Kayla.

    I’m lucky that my relapses have been pretty minimal for a long time now. I still have constant buzzing in my feet and hands but on a scale of 1 to 10, it’s only a 1. It’s just there and I don’t think about it. The fatigue I’ve been able to handle because when I’m on the road, I always have a bed in the tour bus. I have to perform for 90 minutes about 5 times a week. I have 22.5 hours left in the day to eat healthy, have naps and just stay positive. I find it really easy to stay positive because I’m doing what I’ve always dreamed of doing with my life. I’d be lying if I said I didn’t worry about the future. A good thing I’ve learned over the years is that worrying will get you nowhere. Those two words “what if” are very dangerous and everyone should try to erase them from their thoughts.

    October 24, 2011 at 4:05 am #6821

    Meghan
    Participant

    Aaron, very good advice about erasing the “what if”. I find the “what if” is always lurking in my brain when I wake up in the middle of the night. After those thoughts sleep is impossible! Why does everything seem so much more terrifying in the middle of the night? During the day, I don’t have time to dwell on what ifs. In some ways “what ifs” are good for me. The occasional thought of potential blindness or other extreme relapses are what was keeping me eating healthy, exercising and using my medication the first month way back when. Now that I am done hiding like and ostrich in the sand (they don’t really do that) I am going to only use the odd “what if” when the needles get too much or I don’t feel like exercising. Thank you so much for all you do.

    October 24, 2011 at 1:36 pm #6822

    Michi
    Participant

    Hello Meghan,

    I feel like you about the “what if”. When I am alone at home or when I wake up at night my thoughts are as negative as they can be. I am afraid in this moments, don’t know how to fight against this fear. I sometimes cry at night but I try to hide my tears, because I don’t want my parents to have sorrows because of me. In general I think to much about “what if”. So it becomes no help for me, like in your situation. Now my parents are in holiday. I am alone at home and I try to see my friends everyday, but I can’t be the whole time away from home and so the bad thoughts come back. Sometimes I have nightmares they are horrible and they keep me down. But I don’t speak about them.

    Sorry all of this sounds really negative, but there are times in my life, they are the whole opposite. Then everything seems to be good and I feel like I can do everything. What I want to say is, that there are terrible times, like you describe in your blog “why me” but on the other side there are good times, and we have to enjoy this times and get power from them to manage the bad times.

    I wish all the best for you and that you have the power to beat the bad times.

    October 25, 2011 at 1:52 am #6823

    Meghan
    Participant

    Thanks Michi. I have nightmares too and I cry sometimes at night. It’s weird, because in the day I don’t have “what ifs” I only have “if onlys”. If only I didn’t have to pee all the time, if only I could walk down the street for lunch instead of drive, find a spot to park then drive back, find another place to park. UGG!. But, these past couple of weeks have started to change my attitude. Hence, the sudden postings! There is tragedy happening in my community. Young teens committing suicide. I think 6 in the past few months. The girl this afternoon was found in the little forest by my house. Hung from a tree. I would rather have this difficult, frustrating, unpredictable disease than be one of those parents, family members or friends of these kids. The facebook wars between some the divorced parents of some of the kids have been brutal and sad and unfortunately so public. So, yes I am now thanking my lucky stars for what I do have, because really it could be 1 billion times worse in so many ways. Mind you, my kids are going to have me committed for excessive hugging and “I love yous” lately, but at least they know they have someone to turn too. Hopefully

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