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Do you blame MS?

Community Answers
  • nreed2u2
    2 years ago

    Thank you so much for that message on, Blaming MS. I have had severe MS for 35 years in the brain. Doctors quote, “There are so many lesions, too numerous to count”.
    I am one of those people who blames almost everything on my MS. Why not? Ninety nine percent of the time my MS is to blame. I have no long term memories, I can’t remember names, I lost one eye due to Optic Neuritis, I can’t bend over, lower my head down beyond my waist without losing balance, and wake up every day with a migraine but I live a pretty normal life. I focus on what I am able to do; I’m able to walk, run and ride a bike, I still can drive a car, but only in the day, I attend college courses, for the past 28 years to stimulate my brain, I’m an avid gardener, and a Culinary student who loves to bake and cook. So okay, I can’t ride any roller coaster that goes upside down and always has to sit in the front seat of a car, but you learn to adapt.
    Focus on activities that you can do!

  • RNB4
    2 years ago

    34 years ago I was given the news of “probable MS”. Two confusing and frustrating years later it became “definite MS”. Initial shock and devastation turned to fierce determination to prove to myself and others that I could not be stopped; I was a young wife and mother, there were things to get done!
    I was actually shocked the day I realized “The MS” was going to stop me after all, the day I resigned from the career of RN which I had loved for more than 20 years. Then came the humiliating process of applying for disability… after all those years of proving I could do it, I was now trying to prove why I could not.
    I am now a grandmother, still determined to do all I can but at peace with the things I cannot. My walker (“Jay”) is with me all the time, allowing me to accomplish most of the things I need to get done.
    I miss my old life, more than most people could ever know. I gave away the skis, the backpack, the bicycle, but I kept the memories. Yes, I blame the MS, but I refuse to let it steal my happiness. There are stil things to get done!! One step at a time…

  • Lamm
    2 years ago

    Yes i do blame MS, i also blame the air,water & food that we consume. ! I don’t feel sorry for myself because it is what it is & i can’t change it. I miss walking long distances, really not even long just through the park or the mall or around the block or up & down my street with my dog. Yes, we all get to blame MS & imo our environment.

  • pun-kin
    2 years ago

    Yes, I blame MS. That statement ‘I have Ms but it doesn’t have me’ is a joke because my MS has dictated my life for almost 30 years and even more so the past 5 years. I feel as if every night before I go to bed I must ask my body if it would be so kind as to allow me to have a good day tomorrow. As I drift off to sleep, if I’m lucky thanks to a lesion on my sleep center, I feel as if I can almost hear my body laughing out loud at my request. It’s been so long since a “good day” I don’t even remember the day.
    Funny how MS Awareness Month and March Madness are the same month. I certainly don’t need MS Awareness Month to remind me of the madness that MS has brought to my life.
    I have fought and fought this disease since the beginning because I was determined to not let MS be my life. After 30 years of fighting, being force to change my career dream-path, having to drop out of college, then returning to college at 40 but losing my job 4 months before graduation because of MS, then fighting the disability system for 5 years and 12 appeals, to having to be wheelchair bound at 46, I am tired of fighting. Why fight anymore? I was diagnosed before there were any MS medications on the market. My drs tried different things which in the long run caused more issues and damage to other systems in my body. I have fought a disease that has no cure. The only benefit to fighting is so the disease can continue to wreck havoc inside my body while robbing me of more of my independence. My husband, who has been on this journey with me, tells me that I need to have more faith. Bless his soul, he means well and truly puts situations in God’s hands and believes He will take care of them in His time and by His will. I am angry!!! The more I trusted God, the worse my illness became. It’s not that I no longer believe, I just feel like God stopped hearing my cries. I still pray for others and I pray fervently, I just don’t pray for myself. Yes, I feel convicted. I’m not suicidal or anything like that, I’m just wore out from fighting a fight I can no longer win.

  • DDeFord
    2 years ago

    I was diagnosed 23 yrs ago . Before any medications were out as well ! Steroids were the treatments I was on at first .All I know is I’m a lucky one cause I can still walk with my Walker and go to the bathroom by myself ! My mother’s family is riddled with m.s. , A.LS. and a pile of auto immune diseases so all it took was stress to trigger the gene . I’ve lost my ability to work, I have chronic fatigue , and now find it hard to make it through the day especially when it’s hot or cold !! Everything affects my life and world !

  • magoof
    2 years ago

    I know your pain in all reality. It sucks, I wish there was a way to deal with this crap, but I know that there is not, other than talking to people like you that are living in the same hell.

  • 1o2dj5q
    2 years ago

    Sure I blame MS. I had to stop working a career I loved and in which I was compensated well to do. I’m in pain all time, I taken some very hard falls. I can’t sleep more 2.5-3 hours, usually from 8:30 am- 10-30 am in the morning. I can’t multitask, have trouble remembering the names of common item, but can use complex language. My long term memory is shot, However, I’m very happy to have a very supportive wife, who has been with me in sickness and health.

  • Debora
    2 years ago

    Yes, I blame M.S.. I was gifted Addisons disease as a result of over use of Solu-Medrol in the early stages of my disease. So now I not only deal with my primary but a secondary that can kill me , of course my treatment for the Addison’ s is daily doses of glucisteroids. I get to listen to doctors berate me over my high BMI. I’m still as active as possible but it cost me a career, marriage, etc. The worse vocational rehab.,counselor was a woman who had a mild case of MS with only one attack. She kept claiming I had to be faking all the attacks because she didn’t have that many.
    Unless, you love a person’s life don’t kudge

  • BlazeMom
    2 years ago

    Heck yes I blame MS! I was diagnosed 21 years ago, did good for many years until my husband died 9 years ago. I’ve gone down hill since his death from using a cane to a walker to now a wheelchair. I’m now almost 54 years old and I have to live in a nursing home. I used to be very positive, not much anymore. I definitely blame MS for a very crappy retirement!!!

  • 1LisaCPA
    2 years ago

    Of course, I blame MS. I, too, get weary of the Pollyanna mentality. I was Dx in 1991 (yes, 27 years), and I did pretty well until about 2012. When I say I did well, I’m leaving out all the attacks, their emotional toll and, as I realize now, the damage that they left. As many others have said, I’ve lost my career & stopped working late in 2013. One Facebook MS “support” group booted me because they decided I wasn’t positive enough. Did I mention that my mother and two of my sisters also had/have MS? So anyone who dares accuse me of not being chipper enough has a whole lot of nerve and ignorance. I’ve been lucky that my husband has stuck with me all these years. I’m deeply sorry for those whose marriages ended. I have read that the divorce rate for couples with MS have a much higher divorce rate than the rest of the population. Gee, maybe they weren’t positive enough? No. MS is a relentless, heartless beast. Thanks for your post.

  • Kelly McNamara moderator
    2 years ago

    Thanks for sharing! Sometimes in some cases positivity can only go so far! – Kelly, Team Member

  • Jan
    2 years ago

    Hmm…good question, Devin. First, I really like your writing style and content.

    Frankly, at first I bristled a tad related to the backlash of someone’s comment in saying to not blame MS for everything, because I think there is truth in that. But I also think there is truth in hanging a lot on MS. I read your entire post and links. Love the insight, especially in bringing into light the variability.

    If I do look at the impact of this MS beast, truly look at this, then I do get your perspective. Now 13 years into this and sans meds. At the start, I could function likely more than normally (ignorance was bliss with figure skating jumps. Overheating during a workout only meant compromised red-color saturation of a dot at the end of the rink). But then, year-by-year, it has taken over. And influenced, it certainly has.

    MS is a game-changer; for me and for about everyone near and dear. One key for me is to not “think” too deeply about MS; just do as I am able (cane, walker, mart carts and all). To succinctly answer your question, yes MS can be blamed, and rightly so. It’s just that I myself am happier if I don’t play the blame game at all. There is so much “ick” around the world, and my focusing on negative things does not help me. But there is a real tightrope balance between the reality of living with MS/accepting it and doing. Looking back, I could have done so much more. Then again, “what if’s” do me no favors.

  • Kelly McNamara moderator
    2 years ago

    I think your line “…there is tightrope balance between the reality of living with MS/accepting it and doing” is so true for so many in the community. Thanks for sharing with everyone! – Kelly, Team Member

  • Tess
    2 years ago

    Yep. Sure do. Used to be so active. Mountain and road biking, hiking, walking, swimming, golf. Now I’m lucky I can walk my dogs. In pain all the time. Can’t plan anything and have to cancel a lot of things. If I didn’t have this disease, I would still be doing most of the activities mentioned. So don’t dare tell me “MS doesn’t have me”. It dictates life.

  • Bonnie James McCarthy
    2 years ago

    Yes. After almost two decades with PPMS it’s with me 24/7. People tell me I’m an inspiration because I keep trying to be positive. It’s getting difficult. You see almost everyone else walking around having fun. I’m home watching the world go by. I realize everyone has issues and feel guilty if I think I’m thinking of myself. BUT it is MS that ruined my life. So yes, I blame MS. My motto has always been “never, never, never give up”. You should always have Hope.

  • Debbie S.
    2 years ago

    I also have PPMS but only for one decade so far. I am also tired of sitting around and watching the world go by. I try to do as much as I can and keep a positive attitude, but that’s getting harder and harder. Yes I blame MS for taking away my job and my independence and changing the entire course of my life, but those are just the big things. I blame MS for not being able to take a step without concentrating on it. I blame MS for stealing my ability to walk my dog around the block. I blame MS for making it impossible for me to walk on the beach and put my feet into the ocean. I now have my first grandchild on the way and I blame MS for making me be the handicapped grandmother and limiting the things I will be able to do with this child. I know that I can still live a good life and I will be able to find things that I can do with him, but I blame MS for even being a consideration in how I live my life, much less letting it control me. I blame MS For changing every half baked plan I had for my future.

  • carolselby66
    2 years ago

    Yes I blame MS. It also contributed to the loss my career, my marriage, and the ability to fully use up every moment of the day. What I mean by that is being able to go to the grocery store then come home and cook dinner. I run out of steam and can’t finish! And the pain! Nobody can imagine the pain and what’s worse? So many people don’t believe you’re in pain because they can’t see anything wrong with you. Just so people reading this understands, I don’t dwell on this and I truly work at keeping a positive attitude. I’m very blessed with a great support system; my family, my church family/friends, and my gym friends. I try to stay active and social but there are times when the bed calls me loudly and I have to change my plans. MS is a bully and a thief!

  • maggydoots
    2 years ago

    Yes, I blame MS. I fight the battle everyday, and know it is the enemy! After 13 years, I am rarely angry, just annoyed. This was the fight I was given. I don’t have to like it. I just remember that if some new symptom comes up, not to automatically blame MS and dismiss it, and I don’t want others to do it either who know about my disease. Many of us have multiple issues. I have osteoarthritis, courtesy of all the steroids in the early years, and depression and anxiety, which I had prior to diagnosis and which is just anger turned inward. I have drop foot in both feet, and just started wearing braces as a means to keep me upright longer. The first 10 years were less difficult and taxing. Now it is an everyday fight. I don’t want anyone to diminish it. People want you to be a warrior and be positive because THAT doesn’t make them uncomfortable. Illness does. And those people are worried mostly about how it will affect them. So be angry! Those who love you will understand.

  • Judi B
    2 years ago

    Yes. My son is starting to look at college’s. I can’t go with him, to tired or can’t walk that far. So yes there are day when I blame my MS. When I see disappointment in his eyes I blame my MS.

  • Pammy57
    2 years ago

    I was first diagnosed with possible MS in 1993 I received a definite diagnosis in 2002. I been through a lot and I blamed MS a lot for everything that was happening to me. Now I don’t. I do question weather MS has a hand in some of my problems. Especially when there is no concreat answer for what is happening to me. But most times I have a laugh at how this diagnoses has made some things new again. Like a movie I can watch over again or a joke that is funny like for the first time.

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