Taking Life For Granted

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  • August 24, 2011 at 1:47 am #6432

    KaylaS
    Participant

    Has anyone ever thought back to before they were diagnosed?

    I mean i was that kind of girl that lived it day in and day out, without a thought about what would happen the next day.

    When i found out i had MS my thought were like, i have to think about the future i have to start taking care of myself. I took everything for granted before and now its like the food i eat my weight my health and its like there isn’t anyone looking out for me anymore.

    It’s like people that don’t understand what could happen in days, and minutes.

    a panic attack in an MRI blood work and eye exams every 3-4 months and being scared of needles?

    August 24, 2011 at 10:04 pm #6737

    morgan1
    Participant

    Hi Kayla,

    I’m pretty new to this whole MS thing. My diagnosis was last week, although we all had a sneaking suspicion.

    I’ve always been active and I’m not sure how this will effect things but some of the things I enjoy most like downhill biking, skiing, basically all that stupid stuff I’ve been doing for years will likely have to come to an end.

    I don’t get to go to the ms clinic until Sept 12 and I’ll have a better idea after talking to the doc and the nurses there.

    It’s been a wild ride, this last month. I don’t know if I’m flaring or if this is how things are going to be from now on. Numb hands and bad balance – good tikes eh? At least my vision is back to normal.

    It was just a couple weeks ago I first went into the clicking and popping tube (MRI) but I can’t say I look forward to my next, although I know it’s coming.

    I’m trying to concentrate on the things I know for sure, my family loves me, my little girl is amazing and life, all in all, is amazing and good. It’s what we have, right.

    I don’t know if this makes it better or worse but I’m trying to keep it going day to day as I know you must too.

    August 25, 2011 at 3:03 pm #6738

    Lelainia
    Participant

    Hi! I am reading this and I want to let you know that while MS might (MIGHT) affect your ability to do some of the things you love, it doesn’t mean all the good times and adventures are over. I will be writing in the days to come about this topic and I hope that it will inspire you to not give up on yourself or your dreams.

    I know it’s hugely scary facing a new diagnosis-I’ve been there, just 3 years ago, but over time, you will figure out just how much room and emotional energy you need to give to this disease on a day to day basis. It’s not going to go away, but the key is figuring out how to keep it from consuming your life.

    I will be participating in City Chase in just two short days. (This Saturday.) It’s an event which is part obsticle course, part scavenger hunt, much like the Amazing Race. I’m chasing with my son as my partner and it’s going to be a physical challenge. I am not 100%, but if I waited till I was feeling good to do the things I want to do, I’d never get anything done. Sometimes you just have to say to heck with it and go for it!

    Something that’s helped inspire me about dealing with my MS is this:

    “I can be change by what happens to me, but I refuse to be reduced by it.”

    Just know that I am in your corner, rooting for you as you navigate this change in your lives. I am confident that you will find a way to rise above. We’re in this TOGETHER!

    August 26, 2011 at 4:34 am #6739

    F.U.MS
    Participant

    I haven’t thought about what it was like before I had MS until I just read the first line of your post. Hmmm. I was just talking to my daughter about 2 hours ago about all of the bones I broke from snowboarding and bmx biking when I was a teenager but I never thought about it as me without MS. It’s crazy that your whole life can be flipped upside down from an old man behind a desk telling you that you probably have MS. What a crazy ride it’s been since I’ve heard those words. I’m going to go to bed now and try hard to think about me before MS. I know it’ll actually bring back bad memories about how horrible of an eater I was.

    We’ll look out for you Kayla! Us and you.

    a

    August 26, 2011 at 9:56 pm #6740

    KaylaS
    Participant

    Morgan,

    I know what you mean i used to live in the middle of no where (100 mile house, real place) and it was all country there were dirt roads everywhere, i used to be out all summer day and night, dirt biking running around soccer volleyball basketball. 4by4ing, and i mean after i found out i had ms it was like “well that explains why i’m tired for days after being in the sun all day.” but i mean even in the winter we were doing stupid things. getting high and going snow mobiling in the dark, going out drinking and partying and its just like i’m surpised we didn’t get curious as to why i was sick and sore for like 10 months our of the year. i guess i could say that i’m lucky to have been able to go so long with my really really bad habits and have nothing serious about it happen. like the worse thing thats happened to me now is reading in the dark when i was younger making me need and get glasses now.

    And Aaron, yes i understand those broken bones, skiing and all of us trying to get the others to fall well not falling ourselves on our home moutain just, again lucky i never broke anything or hurt myself more seriously. then again it might have been all the drugs we were on at the time.

    but its just like do we ever really think about what we did before we were found out and what we might have done better if it might have made this problem go away?

    August 27, 2011 at 6:04 pm #6741

    prisoneroftoday
    Participant

    I try not to think about it because it’s depressing for me. I wasted so much time drinking, doing drugs, doing absolutely nothing with my life. If I had known back then, I’d like to think I would have made very different choices and would be further along in my education and/or career right now. I’ve had quite a few “aha” moments while looking back, and it just kind of makes me want to kick myself. I should have known better, and I should have gotten help sooner. I miss waiting for concerts and parties instead of MRIs and trips to an MS clinic. While I wouldn’t go back to all the drinking and such now if I could do so without putting extra strain on my liver, I miss being able to enjoy it and I miss having the freedom to do so when I wanted.

    I took everything for granted, but time was that I took for granted the most. Now I sometimes feel like I’m stuck trying to play catchup for all the time I wasted. Even when I’m ahead of others it still feels like I’m 3 steps behind.

    August 29, 2011 at 8:31 am #6742

    KaylaS
    Participant

    Prisoner,

    I know what you mean, i’m not proud ot say this but even after i found out i was well, not the best person in the world to myself. In 2010, i had been dignoised already but I was in the Mr Invisible stage, i figured that nothing could touch me, nothing I did would have any side effects. I’m not proud to say this but the week i was away at camp was my first week clean and sober of drigs and liqour all summer. even after i wasn’t clean i wsn’t doing as much but after that i had a massive relapse that just was karma coming back and biting me, i got kicked out of the one class in my school that i needed because my teacher didn’t believe me that 1) i had a disease and 2)that it ws acting up.

    and feeling behind. you hve no idea I was caught up and head in my new school but then the 6 months came up… millions of appointments coming up and i just got lost in it all and then ended up behind everything again. I have still not found a way to handle the 6 months point. the worst part of it for me is this 6 months point is school exams, MRI’s blood tests eye tests now three different doctors and it just becomes over whleming at times for me and some times i have to make sure that my head is still attached to my body at these times.

    August 29, 2011 at 8:58 pm #6743

    prisoneroftoday
    Participant

    Hi Kayla,

    A week sober is nothing to be embarrassed about, quite the opposite! That is a huge achievement, congratulations on your sobriety! It’s not easy, but you can keep it up *big hugs for you* :)

    Unthinkable that a teacher would kick a student out because of an illness, that is completely unfair. I hope you can get that straightened out, have you spoken to accessibility services at your school about your health?

    I’m worrying about the 6 month point too. It’s looking like I’ll be doing all my medical testing and school exams around the same time, and throwing in the fact that I have to travel to get to the MS clinic doesn’t help. I just hope I can keep up.

    My last post was a bit negative…I was feeling kinda down, and am still having a rough day today, but I don’t think what I said before was accurate. I’d like to think that I would have cleaned up my act if I knew all this was coming, but knowing the way I was back then, I wouldn’t have, it would have just gotten worse. There is no way I could have handled all this as a teenager, I am in absolute awe of all the people that start this journey so young and manage to keep it together. So much strength and bravery, it’s really inspiring.

    September 11, 2011 at 1:24 pm #6744

    Michi
    Participant

    Hey Kayla :D

    I was like you :D I never have a thought about the next day, I was a child , I lived, had fun, no sorrows.

    I played volleyball in an sport club a long time, but then, when I got the diagnose and the symptoms came, I need to stop. Then I tried it with dancing,…the same, then I tried to do Tai Chi, a chineese sport, it works, but then the work outs wouldn’t take place anymore….

    And now I think about, what would be if I hadn’t stop playing volleyball,…I don’t know. I loved to play volleyball, and it was a shock that I couldn’t play it anymore. Now I think it is okay, because I could try new things and I know I got new possibilities.

    Along time I see MS as an enemy,I seperated me from my family and friends, I am afraid to get a boyfriend, because I have the fear, that he wouldn’t stay with me when he find out or when I tell him all about MS. I think about the future, the past. I think to much since the MS.

    Inside of me I know, that I have to accept the MS to live a nearly normal life and

    maybe we can use our illness to meet and know new possibilities.

    September 13, 2011 at 3:44 am #6745

    KaylaS
    Participant

    Prisoner,

    us younglings (yes thats what i call us) well those of us that know of others with ms that are young, the camp for instance it was the thing that was my sober week, and i mean after that i just kept pushing vices away from me, and that camp was an eye opening for me, it made me realize that no matter how alone i felt with my MS i was able to go online and talk to my friends, and even now whenever one of us has a status on FB about relapses its all wishes and prayers and slightly helpful ideas and how to make it a little better.

    I think that i should really really really be thanks F.U.M.S for doing the camp and getting it going for us because we can all share our thoughts and like the summer that just past i mean we had a “sleep over” in the cabins and were up just talking, when we’re together its like we don’t give a damn (pardon the language) that we have a disease we don’t have to pretend that we’re like everyone else. for once we can be like we all used to be before being diagnoised.

    MS to me was an enemy, a slient one that would attack and well hurt me once in a while but then it would become that annoying girl in school that you ignore as much as possible and i guess once i realized that if i accepted it then i would be able to handle it a lot better.

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