Crybaby

I’ll admit it: Contrary to my usual positive, inquisitive approach to multiple sclerosis, I cried last December when my MS symptoms flared. I cried long and hard.

I remember returning home from work, my left leg stiff and weak, stride slowed, with nobody home but the dog and a very demanding cat, and it just poured out of me, the kind of sobbing thrust from the gut, deep and low. It kept coming and coming. I let it. I cried because nobody could hear me. I cried because I felt I hadn’t appreciated walking enough when I had the ability. I cried because I felt responsible for all of it.

“You did this to yourself. You don’t take care of yourself, and look what happens. Hello, slowness.”

I hadn’t eaten, had slept very little, and had stayed at work too long with more to catch up on later, which would now take longer to do because my gait was slower. My graceful and capable stride, recently loosened with a muscle relaxant, now dragged. If this pharmaceutical key to walking smoothly through an entire semester wasn’t enough to help me walk on this particular day, then I was certain there was little hope of moving swiftly or evenly again for a long time.

In essence, I was crying about what most people cry about: Losing the past and facing an uncertain future. Unless you’re a baby, and in that case you’re probably hungry, tired, or need your diaper changed. Wait — I was hungry. I was tired. And though incontinence was not a problem on this particular occasion, I do recall how I’d cried when I couldn’t make it to the toilet in time, the shame I felt for my body forgetting its potty training. Maybe I was just cranky. Maybe I was being a baby.

And so goes another turn of the Wheel o’ Blame: My fault for the flare-up, my fault for crying about it because I’m just a big baby. I deserve it. This, as I usually cover in my Medicine and Society classes, is a classic example of a cycle of patient guilt, blame, and shame, and I was doing it to myself. I should know better. Shame on me! Oh dear, there I go again. And I’ve nearly used up my lifetime allowance of exclamation points.

It actually felt good to cry. When my husband came home, he listened to me, held me, and made us some tea. I let him take care of me, and also challenged him to help with travel plans I needed to arrange so we could see my parents for the holidays.

In the coming days, the kink in my stride turned out to be just that — a little wrinkle in a vast fabric, and my faster stride eventually returned. I won’t claim responsibility for that, though. Sure, I rested more and made lists and read drafts of student papers and plays and helped students and graded all the assignments and chased down assignments I couldn’t find and answered questions via email — all from the comfort of my own home and sleep pattern — but it’s really luck that pulled me through. 

This was perhaps best demonstrated by the pink-eye I developed right before the holidays. I was not taking exceptionally good care of myself, and was clearly run down. Although, come to think of it, I now appear to be blaming myself for pink-eye. Well done, twice in one essay, Laurie! Take a bow. You are an exemplary patient and a walking contradiction.

I indeed kept walking, slowly at first, getting by for whatever reason and despite whatever reason, blessed to be able to walk and stand and grasp objects in hand and concepts in mind. For a while, my body had slowed, maybe telling me something, maybe not. Maybe it knew there were better days ahead.

Tags Symptoms      37 Appreciate this
| Reply
Laurie

Laurie Clements Lambeth, Author

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    64 Comments

  • Johan   Mar 12, 2014 9:55 AM
    I haven't cried. Not over my MS. Not for a very long time. Last time I cried I was married and we put our dog down. When we got home I cried like a baby. Glad my wife was there, she made for a memorable moment.
  • Rekha   Mar 12, 2014 10:36 AM
    ThAnk you I was smiling al day after been at the hospital from 8.30am until 4pm then returned home sat down had tea time with friends then slowly went to our bedroom. I took off my AFO and showered and got myself ready for dinner then sorted things out. I was upset and annoyed with myself and people around me who care for me. Good night
  • Margie   Mar 12, 2014 10:57 AM
    Thank you for this story, I needed to know others are also going thru the same thing, like it or not.
  • Lexi   Mar 12, 2014 11:27 AM
    After reading your post, I can relate. I've had MS for 24 years. I'll cry over MS and then knowing someone is worse than me. My Father who is 94, WWII Vet, P.O.W. 4 years and is sharp as a tack. He is my rock. I look back on my life and wonder where I went wrong health wise. My Mom who passed away almost 6 years ago didn't want to talk about it. When my illness came out in the family, she was mad! My brother told our cousin and let the games begin. Her reason for not telling anyone was because she didn't want to talk about it to anyone. I know knew her all too well, she wanted this perfect family. It's a shame you can't share with your own Mother what I was going through. My Aunt, her Sister passed away a month of each other. It is my Aunt I turned to. She would build me up making sure if I wanted to talk, she was there. I miss our talks. She would ask questions on how I feel. It's sad that I can talk to my girlfriends, but my own family I can't. I remember talking to my Daughter and her comment was "oh big deal, I know this Women who is a lawyer with MS" I cried alone thinking how could she tell her own Mother such a negative comment. Over a year ago I was in the hospital and my Daughter is at the nurse's station telling them she wanted to change my neurologist because one came to my room and SHE liked him better. What she didn't know was that doctor worked with my doctor. She didn't stop there, she went home and called the nurse's station. They wouldn't give her any information and said she didn't want to transfer the call to me. She hung up. I look back and wonder what I did to deserve this treatment. She had turned into a control freak. Someone I don't know. After getting out of the hospital my Brother and his family went to my Dad's (who lives next door, thank God) for an early Christmas. She ignored me and I received nothing for Christmas. I hear everyone saying how beautiful her gifts were. I was never a gift person, I keep cards and she knows that. She broke my heart when my oldest Grandchild graduated 8th grade. I was not included on anything. I just told her not to use my Grandchildren as weapons. But, she did. She has no problem cashing my checks for holidays. I know I'm jumping around here. Sorry, I go from one subject to another. My Dad said leave it alone and don't say anything. But, she exactly what I didn't want!
    She took my 3 Grandchildren. Crying once again.
  • Celeste   Mar 12, 2014 11:59 AM
    Laurie-thank you for sharing and admitting that you also struggle with self-blame and guilt. I have retired from the military reserves, practicing law and teaching. I now take care of my neighbors' pets when my neighbors travel. It shouldn't be stressful, but I find myself exhausted after a week of dog sitting and have to spend a week recovering. I blame myself for being tired (I over extend myself cleaning up after and playing with the pups) and then feel I guilty for having to rest the following week. I also feel sorry for myself, mourning what I've lost rather than being thankful for what I have. Blessings to you for sharing your tears and fears.
  • marsha   Mar 12, 2014 12:24 PM
    Ladies, crying is exhausting. Blaming oneself for cells that go haywire also a waste of time. We have a deck of cards, how we play them is our personal responsibility. Most women i ask when I see they have M.S. is did you have mononucleosis. All say yes. Are you to blame yourself for that? I had my first optic neuritis symptom at twenty. I am now sixty-seven. My walking is compromised. I have had a slow progression over all these years. I use a scooter to get around outside. I look at the fast pace of people and wonder do they realize how fortunate to walk with ease. They don't. Appreciate what you can still do. Unless there's a cure, the disease is progressive. Take care of yourselves.
  • Celeste   Mar 12, 2014 12:24 PM
    Lexi--I am sorry for your suffering. It sounds like there is more going on with your family than not coping well with your MS diagnosis, even after 24 years. You cannot do anything to change the actions or reactions of your family members. You can, however, focus on changing your own actions and reactions to the narrow-mindedness and selfishness of your Mom and daughter. STOP expecting them to be empathetic or supportive. If you have no expectations you can't be disappointed. BE kind and loving to yourself instead of wasting your precious energy on those who do not appreciate you. When you see your daughter and grandchildren, be GRACIOUS, so they will want to come back.
    I speak from my own pain and experience, so please know that when I started changing my attitude and expectations, things did get better. Not perfect, but better. Best wishes.
  • Avatar
    Nana_of_the_north  Mar 12, 2014 12:57 PM
    I've had ms for 42 years and I have had the whole gamut of symptoms and many, many exaxerbations. My gait is quite poor, but I am still Mobil. My intention tremors in my hands and head are extremely annoying, the numbness that remains after an exacerbation can irritate me, the trijeminal neuritis in my face hurts and sometimes I feel sorry for myself, BUT not for long because I keep pushing. I've always pushed to my limits, which took some time to find where those limits lie. I have a good relationship with my neurologist, a wonderful supportive family, I take my medication, and try to eat properly. Marsha is correct when she said we've been dealt a hand and God willing we need to play it the best we can. I've got ms, but ms doesn't have me!
  • Eva Marsh   Mar 12, 2014 1:06 PM
    Dear Laurie
    You are not at fault - it's a virus! What stress where you under? Please have a look at my website-I found research on repair of myelin after diagnosis in 1967- recovered from all symptoms-will be 70 and fully mobile. www.evamarsh.net
  • Lori   Mar 12, 2014 1:46 PM
    I totally understand your sobbing...I have done it many times. I'm in mourning of what I've lost, the ability to walk being the most devasting.
  • Avatar
    hanyagordon  Mar 12, 2014 1:59 PM
    "I was crying about what most people cry about: Losing the past and facing an uncertain future." Thank You for articulating this fear x
  • Roberta   Mar 12, 2014 2:02 PM
    Your blog post touched my heart. I've started steroids today as I'm having my first relapse since the diagnosis in 2009 and I share your feelings.
    Thanks for sharing it with other people. Knowing we're not alone helps a lot.
    Keep your chin up and be strong!
  • Darlene   Mar 12, 2014 2:06 PM
    Thank you for sharing your story. I needed to know that I'm not the only one that goes through the same. (((hugs)))
  • Sanaz   Mar 12, 2014 2:07 PM
    Your cry and tears are also mine! I had enough of self courage but it is ok. Tomorrow can be better.
  • Lucy   Mar 12, 2014 2:08 PM
    I've been diagnosed for 2 years and gave 3 small kids byt a wonderful supportive husband. I still cry and fear for an uncertain future often in silence and darkness I wouldn't dare let my children see my fear . Just when I feel my lowest I hear something positive or I see someo worse than I and think I am truly blessed for what I have and not what I don't have . Thank you for sharing this I really needed it today xoxo
  • gail   Mar 12, 2014 2:09 PM
    I was thrown into full blown...any and every symptom present and accounted for, 4 years ago right after I had surgery. I was a hot mess to say the least. I had been working 3 jobs-72 hours a week, survived on coffee, Mt. Dew and little food here and there. I was on my own, taking the world by the butt-in a fairly new and amazing relationship, my daughter was grown and doing well..this was MY TIME to soar! I was so depressed, I seriously asked my boy friend to wheel my chair into on-coming traffic. After many months of therapy, finding the right neuro and the proper medication, diet and exercise program for me..I am a lucky woman...now work 40 hrs a week, can walk and even RAN my first 5k 2 years ago and actually did better than my goal. I still have little flares and issues...but I fight like hell for me, my daughter, my boy friend...I still cry and feel frustrated at times and am scared what the future may bring...but for every fantastical, amazing person out there with MS..I keep fighting, living and trying to have fun
  • Carleen   Mar 12, 2014 2:14 PM
    Your words echoed for me. Over 25 years after I was told I would never walk again I am still on my feet. Albeit now I do take advantage of the electric carts at large stores and theme parks. I continued working in Radiology for another 18 years. My journey led me to change my clinical position for a desk that eventually led me to creating a department that scheduled exams across our health car system. I managed the Women's Heath Center and returned to college to get a second degree on computer programming. Eventually I went back to my clinical roots and after a year got my dream job in the Cat Scan Department. It was a long and interesting journey that made it possible to meet and marry my loving husband. He knew my condition and it didn't frighten him. All in all I got lucky because once I stopped crying I started to create opportunity. I am now secondary progressive and have to truly pace myself but I am still standing! Be courageous and life will offer you more than you ever could have imagined. ♥
  • brenda m. brabson   Mar 12, 2014 2:30 PM
    after reading your post I thought of me. the only thing I did not cry out loud I cried within. I was diagnosised 1982 26 years old. I thought my world was falling apart. reading ms material changed this.
  • tarbororms   Mar 12, 2014 2:32 PM
    You are not alone on the multiple issues you listed. I wobble 2-3 miles around our town 6 days a week in fear of eventually NOT being able to in the future. I always Feel its "me" against the world with any MS issue that rears its ugly and hated demand on my body!
  • Megan   Mar 12, 2014 2:35 PM
    Thank you for putting your thoughts and fears into this article. I do not have M.S, but my mom does. She has fought this disease with such grace, faith, determination, and the most beautiful smile. She is my best friend and my rock. There are those dark days though. On the days when I can tell she's trying to hide the tears my heart breaks for her. Your article has given me a glimpse into how she might view things at times. Maybe now I'll be able to help her view her bad days as just a little wrinkle.
  • Angela   Mar 12, 2014 2:35 PM
    I had a similar experience. When I found out I had ms I pushed some people away an by doing that it was a disservice to myself. I rember crying every night for like 5 months thinking I can't do anything nothing was going right my friends disappeared. When I tried to talk to them again. It has been hard on me with my mom who has PTSD an her not understand a lot. I feel your pain. It come every so often this flare up an so does my ms.
  • Cheryl   Mar 12, 2014 2:57 PM
    So, the year 2000 was to be a turning point in my life...not only was i going through a divorce because my husband thought i was faking my symptoms of the, as yet undiagnosed, mystery illness, i was also asked to retire early from my job as a customer service rep. because i was having trouble writing up orders and dealing with the customers. My patience and usual optimistic attitude was challenged on a daily basis. The tears, the frustration and the knowledge that life was never going to be the same has it's own impacts on your psyche. Nowadays, i just do what i can...my body tells me when it's time to slow down.
  • Candy N   Mar 12, 2014 3:20 PM
    Thank you for writing what I feel every day.. yes I say I weeble wobble, but I wont fall down. MUCH.. I took a cruise once and when we hit rough waters people were rocking from side to side in the hallways.. I said.. now you know how I feel.. I wonder if there is a MS cruise somewhere. Where they have information classes on board and awesome foods that help our symptoms. hmm I should check into that. keep on truckin girl.. just think of yourself as a teacher for others.. I change my thinking saying I need to learn to be the helpee instead of the helper.. after all the next generation needs people to practice on to learn patience . Thanks for listening people.
  • Jackie B Central Texas   Mar 12, 2014 3:23 PM
    Having been diagnosed with MS only 7 days after our home burned down Labor Day weekend September 2011 I cried harder over that loss than that of my mobility. Now almost a year and a half later of being on Copaxone injections every day, taking high dose oral steroids a couple times, having Physical Therapy several times and committing to daily exercises to keep my leg spasms at bay and help strengthen my legs as well the MS is something that I have not cried over. Even when my body betrays me daily, with crazy symptoms that I never thought would keep me from enjoying the active life I used to lead, the only thing that really gets me blue is the fact that less than a year after the DX had to put my dog to sleep and miss him very much.

    Laurie we all have a long hard road to travel, how we approach the journey is how we can make the best of it. Thank you for having the courage to share your "moment of weakness", it made you stronger in the long run and just knowing that we all have days that are not so great helps more than words can ever express.
  • fabes  Mar 12, 2014 3:35 PM
    Thank you for sharing. It took me a while before I shed a tear. Then it took awhile for me to call someone and let them hear me cry. I felt so much better, knowing someone could hear me.
  • Wendy   Mar 12, 2014 4:40 PM
    First: I can really relate to this! That whole "guilt" cycle, but when it comes down to it I know that it is healthy to cry sometimes; just let it out, just as long as I can get positive again and move on.
    Second: as a Christian, I do not believe in luck. I believe that God pulled you thru that and hopefully will continue.
  • Avatar
    cynthiarutledge  Mar 12, 2014 6:01 PM
    There are many days that I wish I could sit, cry, and let it all out!!
  • Avatar
    mitzy8401  Mar 12, 2014 6:45 PM
    Fear of the unknown..that is what makes me cry. Why don't I listen to my body? She knows when I am not feeling well. She knows the signs and symptoms to watch for. But, I put on my Super Woman cape and trudge through life. Why, because that is what I was taught. Asking for help is a sign of weakness. So that is what I do, ending up sad and resentful. Some times I get this MS thing and what I need to do so I can stay healthy. I want to run a 5k, yet I take zero time to train or any work out. I set myself up for failure. I work full time, drive 70 miles to work. I am a wife and mother to an active 7yo. I need to make time for myself. I need to figure out how to carve that into my schedule. I cry everyday and I am tired of it! I can create my own destiny...If I allow myself to not be perfect and ask for help. Thank you to all for opening my eyes to my potential.
  • Brenda Steinbach   Mar 12, 2014 8:28 PM
    I was diagnosed with MS 29 years ago. I raised two children and have been fortunate to have a husband that has worked so I did not have to work outside of the home. Three years ago I attended a community college to become an ACE personal trainer. I have also become a senior fitness specialist. MS has certainly changed my life but I have always exercised and really think that has kept me in good physical shape. Thanks for sharing your stories and try your best to stay in good health. Always be positive!
  • Katrina   Mar 12, 2014 9:59 PM
    Great post/thoughts. Thank you.
  • Dottie Sauchelli Balin   Mar 12, 2014 9:59 PM
    I was diagnosed with MS in 1999 one year after I was diagnosed with Lupus. I have cried at some point but not much. Just the other day I had a meltdown and cried for a long while. It took me about 30 minutes or more just to put my socks on, and that is when I fell apart. I do not give up and have a great attuite towards my illnesses. Yes, I have 2, MS and Lupus...and you would think I would be crying all the time but I really try to deal with my issues. Sometimes it gets very over whelming and it can't be helped. I have been reading your post for a long time and never commented, but this was so compelling I had to respond. I live alone as my husband left me due to my illness, said he could not deal with things. My son is working upstate NY, and I see him 1x every other year. But I do have my parents which are 87 and 85. They do not understand my story and think if I took care of myself better I would not have these 2 illnesses. They think that I just need to eat better, or loose some weight, and I will be all cured. So I deal with this as well, and that is where I feel the guilt. I am supposed to be caring for them, instead they are helping me out as much as they can. I understand that they have no clue, but they feel that they have done this to me, with the genes that they passed along. At the beginning they didn't even want to know about anything. So for all these years I have to defend myself to them all the time. It is frustrating and sad at the same time. So I guess I can cry when I need to, and I thank you for giving all of us permission to do so. Love all your posts and have saved them so I can go back to them at anytime. Thank you Blessings Dottie :)
  • FUMSnow.com   Mar 13, 2014 7:09 AM
    I've been where you were too. I don't imagine many completely escape that place at some point or another. Thank you for sharing your story, your struggle, your triumph, your humor, your world. It's a world shared by many of us - and there's comfort in knowing that there are others in that same realm. Hugs to you and to everyone on this path. FUMS.
  • Anna   Mar 13, 2014 7:11 AM
    Thank you for sharing.Sometimes I feel like no one else understands the crazy symptoms and how we feel better and do too much and then crash again. I cry alot..I mourn the old me but im learning to embrace the new me with its limitations and Im learning to pace myself and thats its ok to say "No".
  • Avatar
    yogadeb  Mar 13, 2014 8:00 AM
    Thank you for this great post. I related to it immediately. Most of the time, I'm on the "this is what it is, so how do I deal best with it in this moment" path. But, every now and then, I get overwhelmed and end up in tears. Having a support system that understands we can't be Super Heroes all the time makes a world of difference. As does a yoga and meditation practice --- which help me remember to be compassionate with myself when I get overwhelmed or find that I'm blaming myself for doing too much and having a flare-up (I blog about this at ClearReflectionYoga.com/blog). Thanks again for sharing a story that reminds us its okay to have "a moment" as long as we get back up.
  • Elaine Daffron   Mar 13, 2014 11:20 AM
    I fall apart every time I have a major MS symptom flare up. It scares me because I don't know if it'll quit, if it'll make me worse overall if and when it does quit !!
  • cynthia   Mar 13, 2014 12:13 PM
    I know exactly what you mean because I cried also. I had ms since 2007 and before that stiffpersone syndrome, and myasthenia gravis I have three auto immune disease. I have gotten a lot better but sometimes I still get those moment when I just cry.
  • DMB   Mar 13, 2014 1:14 PM
    I have cried about losing the ability to take care of myself. I still do a lot of things, but when I talk to some family members, it is like I shouldn't let it bother me. Like, just to ignore it, it isn't really there. Or they get upset with me, because I have to have a wheelchair, I can't have stairs around. I need to go home to go to the potty, etc so, they didn't inclued me on one of their outings. But, it is ok, I will be ok. I have never thought my working, traveling for work caused this, it is something that you get plain and simple. I do cry when I have to be cleaned up, hey I'm adult, I needed to be able to handle that, (if I didn't have ms) but I would cry. I would call my sister a lot she is in another state, but we talk every day several times a day. That helps. You have ms, you will have good days, happy days, and sad days, only difference between me and others, I also have ms.....God Bless all who has read this comment.. :)
  • Jennifer   Mar 13, 2014 3:54 PM
    Excellent article. I have very similar feelings. I mostly feel guilty when I start to feel sorry for myself and then see someone else that can't do the things I can. I often think I took my health for granted before MS. What hit me hardest in your article was that you have the care of your husband. Be thankful for that. I am a single Mom.
  • Kathleen   Mar 13, 2014 8:39 PM
    My brain specialist and my neurologist are 99.9% sure I have MS. I am single, a mother of two adult daughters and grandmother of a gorgeous granddaughter. I have been divorced twice. I no longer work. I am doing the best I can to stay possitive I am reading a lot on MS. My love and prayers are with you all.
  • Kathleen   Mar 13, 2014 8:39 PM
    My brain specialist and my neurologist are 99.9% sure I have MS. I am single, a mother of two adult daughters and grandmother of a gorgeous granddaughter. I have been divorced twice. I no longer work. I am doing the best I can to stay possitive I am reading a lot on MS. My love and prayers are with you all.
  • Kathleen   Mar 13, 2014 8:39 PM
    My brain specialist and my neurologist are 99.9% sure I have MS. I am single, a mother of two adult daughters and grandmother of a gorgeous granddaughter. I have been divorced twice. I no longer work. I am doing the best I can to stay possitive I am reading a lot on MS. My love and prayers are with you all.
  • Kirk Williams   Mar 14, 2014 4:57 PM
    Great Post. Several times a week -- I feel well enough that I think to myself "You could work!" Then unceremoniously that thought is slammed to the ground by the reality of my MS disability.
    We guys tend not to cry but I have come close many times and I certainly wanted to. In fact, I maintain that a good cry now-and-then is helpful: even to us guys! The concern is when we stay depressed for an extended time. No, I haven't cried. Yes I lament the loss of my most productive money earning years but I consciously distract myself by doing as much as I can for my family and as a volunteer.
    Like all (I'm pretty sure all) people, life comes with disappointment. It also comes with immense joy. Regardless of how these balance, I choose to dwell on the positive things I experience.
    Do what we can. Look forward or up instead behind us or down. And banging our heads against a wall will simply produce a headache or worse!
  • Deb Padovano   Mar 15, 2014 12:26 PM
    My daughter has MS. She posted this on FB. She never really says too much about her symptoms. I read this and could just image her feeling this way. Maybe this was her way of letting me and others know her battle. I cried for her yet now I know I can be stronger. I can understand more. I can be more patient when she is tired and not feeling well. Thank you and thank you, my baby girl for sharing this.
  • Deb Padovano   Mar 15, 2014 12:26 PM
    My daughter has MS. She posted this on FB. She never really says too much about her symptoms. I read this and could just image her feeling this way. Maybe this was her way of letting me and others know her battle. I cried for her yet now I know I can be stronger. I can understand more. I can be more patient when she is tired and not feeling well. Thank you and thank you, my baby girl for sharing this.
  • Deb Padovano   Mar 15, 2014 12:26 PM
    My daughter has MS. She posted this on FB. She never really says too much about her symptoms. I read this and could just image her feeling this way. Maybe this was her way of letting me and others know her battle. I cried for her yet now I know I can be stronger. I can understand more. I can be more patient when she is tired and not feeling well. Thank you and thank you, my baby girl for sharing this.
  • Avatar
    teresamarcum  Mar 16, 2014 2:40 PM
    I am being tested for MS and my Neurologist is almost positive I have it. I have been have symptoms since August 2013. In the beginning they thought I may have had a stroke, but after an MRI and a multitude of test and bloodwork it is looking more and more like MS. My Neurologist has recently referred me to another Neurologist who specializes in MS and he feels sure this is my problem. I go this week for an evoked potential test and more MRIs, but he is almost certain of the diagnosis. I am having a terrible time with my vision, when I am not experiencing blurry vision I am experiencing double vision. I am having a hard time driving, it seems worse when I am moving, like when I am driving or walking. Can anyone else tell me if they experience this in the same way?
  • jcera  Mar 16, 2014 2:54 PM
    I have had MS for over 10 yrs now, and I am sick of it. Is this the 21st century? What am I/We waiting for? My doctor said everthing would be great, who is it great for?
  • aaron   Mar 17, 2014 6:51 AM
    Yes u are right jcera I have ms for 10 years to.I hate it the first time my girlfriend for 10 years lift me.now my wife left me all over my ms.Yes I have a lots to cry about.
  • aaron   Mar 17, 2014 6:51 AM
    Yes u are right jcera I have ms for 10 years to.I hate it the first time my girlfriend for 10 years lift me.now my wife left me all over my ms.Yes I have a lots to cry about.
  • katvilc  Mar 22, 2014 4:16 PM
    I truly appreciate Laurie's story, she is a very encouraging spirit to me. I was diagnosed 25 yrs. ago and currently am dealing with some leg muscle issues and recovering from knee surgery but, I continue to push forward personally, and professionally. Thank You Laurie for being a wonderful soldier in war on MS.
  • chicagorunner07  Mar 23, 2014 11:40 PM
    Hello all

    This MS is really getting me down. Nice to know that I am not crazy. Feel like giving up. Just do not want to keep dealing with this. I wondered the other day if I were to speak to a friend for the last time, what would I say? How would I convey my feelings about living with the disease? Yes, we have loved ones. At the end of the day, we must do it. We must be strong minded. No one can do it for us. I am just tired of the fight.
  • Enjy Yakan   Apr 8, 2014 9:40 AM
    I'm facing the same, I'm 25 n I was diagnosed last sept. I'm really scared, I don't actually understand anything ... I didn't know what is MS until I was diagnosed. .. I have a lot of supportive people around me but I don't really sharing my symptoms with them coz they don't actually understand what is MS
  • catherine redd   Apr 9, 2014 2:42 PM
    I just wanted to say that I do not cry any longer;I realize that I have to do this alone. I would cry if someone cared. I would just like to have a friend to talk to, not cry to.
  • Avatar
    quiltermidge  Apr 10, 2014 10:22 AM
    I have just been diagnosis in January 2014. I have not cried about it till last week. I had a poor me moment and was my family mad at me. I have been off work since January and for the first time in my life I do not have a plan, and I have to rest. Not me ! the perfectionist who is busy from sunrise to sunset. I felt so guilty for crying that day as my family kept saying U have to be positive, knock it off. I continue to fall a lot due to gait issues and have no balance. I am an ER nurse manager 1/2 time and ER staff nurse the rest. The hospital won"t let me come back until I can function in both roles. I am quite positive I will not ever be able to do bedside nursing safely. I was feeling sorry for myself as I cannot go back to work yet. As I sit here and think about my future your post was good for me to read. Thank you! Marjorie Milliken
  • Avatar
    quiltermidge  Apr 10, 2014 10:22 AM
    I have just been diagnosis in January 2014. I have not cried about it till last week. I had a poor me moment and was my family mad at me. I have been off work since January and for the first time in my life I do not have a plan, and I have to rest. Not me ! the perfectionist who is busy from sunrise to sunset. I felt so guilty for crying that day as my family kept saying U have to be positive, knock it off. I continue to fall a lot due to gait issues and have no balance. I am an ER nurse manager 1/2 time and ER staff nurse the rest. The hospital won"t let me come back until I can function in both roles. I am quite positive I will not ever be able to do bedside nursing safely. I was feeling sorry for myself as I cannot go back to work yet. As I sit here and think about my future your post was good for me to read. Thank you! Marjorie Milliken
  • lexie  Apr 12, 2014 8:19 PM
    I have had a diagnosis for 15 years; however, my physicians feel that the 17 placques in my brain, didn't happen overnite, and they have been around for several more years. I hear and can relate to some of the pain expressed by most bloggers, as this disease process is so difficult to grasp. As anurse, I too, worked under stress, and endured the stressors of a bad marriage. I am not sure where this came from, but I do knoew it rears its ugly head, mostly when I allow myseltf to stress over things. I have only had two 24 hour flare-ups in the last 15 years. I have taken Avonex, Copaxone and lastly beta seron. They may have been what has kept me from any new exaccerbations. I am too old for the support groups, they go upto age 55 LOL. I have a question for the forum..What is the length of time for these meds, before their efficacy is lost? I quit taking my meds almost a year ago as I thought I would give my system a rest.So far I have not had any issues other than getting tired in the heat. How do you know when it is an aging issue or an MS symptom? My docs don't know the answers to those two questions. Do y'all Thanks for reading. Please love yourselves and know that a posiitive attitude helps tremendously. We just can't CHOOSE to be a victim.
  • Avatar
    RogerandTami  Apr 15, 2014 4:40 PM
    My life has been a thrill ride and it has now become a train wreck. I have had symptoms of MS since from about 99-00. Being the adrenaline junkie that I am, I just wrote my symptoms off as results from previous injuries, no big deal. In 2010 I was involved in a car accident where I got rear ended. Up to that point, all I was dealing with was numbness in my left hand but then came the weird walk that made me look as if I had a stroke. I went to the Dr. and they did x-rays and tests. I have two herniated, bulging disks in my neck so off to the neuro-surgeon. His examination said something else so he sent me to a neurologist. That Dr. told me that I had MS. You know the routine, oxygen gone, stomach in throat, Brain exploding in disbelief and indignation and fear. All the things that make you want to hide or disappear. This can't be true, I'm too healthy and active. There has to have been a mistake. My wife is stoic. She has no idea what to do or think. I felt so horrible at how clueless she was about her future plight with me. I prayed for her. I broke the news to my mother and try as she may she eventually broke down. You see, my mother grew up with a father that had MS and that was when no one even knew what it was. He had it bad for 20+ years before they gave it a name. She watched her father struggle and suffer and deteriorate and now her son faces that same plight. Of course we now have medicines that will aid us in our daily lives. My wife and I began to do research and read what ever we could. She was a champ and she prompted me t
  • Avatar
    RogerandTami  Apr 15, 2014 4:40 PM
    My life has been a thrill ride and it has now become a train wreck. I have had symptoms of MS since from about 99-00. Being the adrenaline junkie that I am, I just wrote my symptoms off as results from previous injuries, no big deal. In 2010 I was involved in a car accident where I got rear ended. Up to that point, all I was dealing with was numbness in my left hand but then came the weird walk that made me look as if I had a stroke. I went to the Dr. and they did x-rays and tests. I have two herniated, bulging disks in my neck so off to the neuro-surgeon. His examination said something else so he sent me to a neurologist. That Dr. told me that I had MS. You know the routine, oxygen gone, stomach in throat, Brain exploding in disbelief and indignation and fear. All the things that make you want to hide or disappear. This can't be true, I'm too healthy and active. There has to have been a mistake. My wife is stoic. She has no idea what to do or think. I felt so horrible at how clueless she was about her future plight with me. I prayed for her. I broke the news to my mother and try as she may she eventually broke down. You see, my mother grew up with a father that had MS and that was when no one even knew what it was. He had it bad for 20+ years before they gave it a name. She watched her father struggle and suffer and deteriorate and now her son faces that same plight. Of course we now have medicines that will aid us in our daily lives. My wife and I began to do research and read what ever we could. She was a champ and she prompted me t
  • Avatar
    RogerandTami  Apr 15, 2014 4:40 PM
    My life has been a thrill ride and it has now become a train wreck. I have had symptoms of MS since from about 99-00. Being the adrenaline junkie that I am, I just wrote my symptoms off as results from previous injuries, no big deal. In 2010 I was involved in a car accident where I got rear ended. Up to that point, all I was dealing with was numbness in my left hand but then came the weird walk that made me look as if I had a stroke. I went to the Dr. and they did x-rays and tests. I have two herniated, bulging disks in my neck so off to the neuro-surgeon. His examination said something else so he sent me to a neurologist. That Dr. told me that I had MS. You know the routine, oxygen gone, stomach in throat, Brain exploding in disbelief and indignation and fear. All the things that make you want to hide or disappear. This can't be true, I'm too healthy and active. There has to have been a mistake. My wife is stoic. She has no idea what to do or think. I felt so horrible at how clueless she was about her future plight with me. I prayed for her. I broke the news to my mother and try as she may she eventually broke down. You see, my mother grew up with a father that had MS and that was when no one even knew what it was. He had it bad for 20+ years before they gave it a name. She watched her father struggle and suffer and deteriorate and now her son faces that same plight. Of course we now have medicines that will aid us in our daily lives. My wife and I began to do research and read what ever we could. She was a champ and she prompted me t
  • Avatar
    RogerandTami  Apr 15, 2014 7:20 PM
    My life has been a thrill ride and it has now become a train wreck. I have had symptoms of MS since from about 99-00. Being the adrenaline junkie that I am, I just wrote my symptoms off as results of previous injuries, no big deal. In 2010 I was involved in a car accident where I got rear ended. Up to that point, all I was dealing with was numbness in my left hand, but after the accident came the weird walk that made me look as if I had a stroke and was really drunk. I went to the Dr. and they did x-rays and tests. I have two herniated, bulging disks in my neck so off to the neuro-surgeon. His examination said something else so he sent me to a neurologist. That Dr. told me that I had MS. You know the routine, oxygen gone, stomach in throat, brain exploding in disbelief and indignation and fear and denial. All the things that make you want to hide or disappear. This can't be true, I'm too healthy and active. There has to have been a mistake. My wife is stoic. She had no idea what to do or think. I felt so horrible at how clueless she was about her future life with me. I prayed for her. I broke the news to my mother, and try as she may, she eventually broke down.
    You see, my mother grew up with a father that had MS and that was when no one even knew what it was. He had it bad for 20+ years before they gave it a name. She watched her father struggle and suffer and deteriorate and now her son faced that same plight. Of course we now have medicines that will aid us in our daily lives. My wife and I began to do research and read what ever we could. She was a champ and she prompted me to be the same and to lean on my faith in Christ Jesus. I tried my best as I new how. My body was changing and I didn't know why or how to stop it. It felt as if my brain was crawling around inside my skull and I could't make it STOP! Next was the excessive blinking of my eyes. I was beginning to lose focus. So here I am, Mr. activity adrenaline junkie blinking my eyes A LOT and shaking my head rather emphatically at the same time. I looked like a junkie in need of a fix. So through all of this I begin to lose the fight and my attitude and temperament began to change. My memory was once was VERY good (especially with numbers) and then it became only mediocre on a good day. I perceived all of these issues to be weaknesses in my personal armor. That was bad, I had to fix them all.
    Have you noticed the pattern yet?
    I began getting irritated at people but mostly, yep, you guessed it, my awesome wife. I did a self assesment to determine my future worth as a man and the truth was horrifying. There was no way that my wife deserved that, she doesn't know what's in her future if she were to stay with me. She deserves to be happy, not burdened. So I tried to run her off. I became MEAN and ugly.
    But remember...it was for her own good.
    She won, I ran out of energy. :) I was so happy I cried and begged for her forgiveness and promised to NEVER act like that again. Man, I was doing GREAT. I got to be a kid in love all over again, it was AWESOME.
    Things inside my head weren't finished. I again began to fight losing battles to keep control of ME! In doing so, I started breaking my promise to my BEAUTIFUL wife.
    I do not deserve her and she does not deserve this.
    I feel as though I am flying in a tornado. I can't stop or get out. I am completely powerless against MS.
    When I accepted that as fact and truth, I realized that I am a schmuck and a butthead. I guess the worst thing is that now that I know how much I need my wife, She may be tiring of my antics and losing her patience with me.
  • Avatar
    Sarahspeer  Apr 23, 2014 1:29 PM
    You are a wonderful writer. I was a therapist in private practice before the MS demanded that I stop. I now lead a telephone support group with people with progressive MS and I would like to share the first part with them because in my group of mostly women we all tend to blame ourselves, but I always remind them they wouldn't blame anyone else with this illness!!! And like you I miss being able to walk gracefully and still am struck by grief when I see people playing tennis, that I once loved to do and riding my bike at breakneck speed. Now I play tennis on my Wii and on my iPad and ride bikes on a stationary bike or on my trike. There is a book title that is poignant- The Memory of Running!! I use thus quote from Dr. Seuss "Don't be sad for what you can't do be happy for what you were once able to do" but I am not Pollyanna so sometime that is harder than others. Please let us know when your essays are published as I would like to buy a copy. Sarah
  • singerbonnie  Apr 26, 2014 12:09 PM
    My paperback book and CD, MS ENTERTAINER, is an encouraging story about rodeo, music, and MS. I'm also a teacher. Bonnie Lynne Ellison
  • Ted   Apr 30, 2014 11:43 AM
    It’s OK to cry, just allow yourself to go forward afterwards. There are many promising studies on natural ways of dealing with MS.
  • sueh88   May 21, 2014 11:22 PM
    I have had MS for about 30 years now and diagnosed for 20 years. I have 5 kids that are all grown now with 4 grandkids. Even though I had 5 kids and secondary progressive MS, I got a scooter for fatigue which enabled me to attend most of our kid's school activities, retired on SSDI, but also worked part time for about 9 years until I was in a car accident on 6/1/08. Until the car accident I had never missed work from MS because the job I had allowed me to choose my hours and work from home. I did eventually go back to work for about a year until the injuries sustained from the accident forced me to stop until the wound healed which took over a year and by then there was no funding for the job so have not worked for 2 to 3 years now.
    I have been in the process of getting a different van for a while now. The one thing that I have noticed physically was that when I got sick from the car accident mess, flu, etc my MS basically made me unable to do much of anything and forced my husband to have to take care of me. This has been very frustrating for me because I love my independence but have been stuck her at home for the most part. I have tried to do some volunteer activities but it was irritating because he was always there. This past winter has been a nightmare with snow and ice helping to keep me at home even more. My husband is a good man and I love him but absence does make the heart fonder. lol
    I have been trying to hang in there in a large part due to the internet, etc. In the past 3 weeks I have had 2 relatives and a friend pass away. I also realized that much of my volunteer activities were for nought and have been so depressed even though the weather is getting better. My husband and I are bickering constantly from being around each other all the time. All these factors have left me very depressed and all I do is sleep most of the time. I have dealt with depression before and am sure that I will again but about the only thing that helped me was getting out and doing things that would help others. So, I hope the van issue gets better so I can get the hell out of this house and save my sanity.