I feel like crying all day. I’ve been at it for 2 hours, so I’m well on my way. My husband says I’ve been acting differently. I guess he should know because he understands me better than anyone else and that sometimes includes myself. Once again he is right. I am acting different. But, it’s not because of something he did. It’s because I am different. I am a different person. Perhaps he’s thinking of the old me. We both must miss the old me. But no one misses her more than me.
That’s why I cry.
Right now I don’t know who I am. I know who I was. But I can’t find that person. Sure there’s pieces of the old me here and there but the package has changed. The person I see now is a stranger. That’s not me in the mirror. I’m not like that. That person looks older than me. That person looks broken. That person needs help.
I’m independent. I’m strong. I’m authoritative. The person I see in the mirror is none of that. No one listens to her. No one takes her seriously. When she talks she stumbles on her words and her speech is slurred. When she is amongst strangers you can feel the pity in the air and see it in their eyes as they speak to her. But how can you blame them because when I look at her I pity her too.
I know I should embrace her but it’s hard. Every picture, every memory, every conversation about the old days leaves me longing for my past self. I guess I have to get to know her. So as I sit here looking at her in the mirror she cries for me.
She cries with me.
And even though I’m trying to accept her I still wish she would just go away and bring the old me back. But until then I will recognize her as me and hope everyone else will as well.
As we cry together.
I could not refrain from commenting. Very well written!
I loove reading this. Ty for possting this. I havee been crying all day…. I drivve my husbannd crazy by starring stupid fights and my daughhters have seen their strong independent mom turn into a person who needs help to walk acrros the room and who often has to hcange bc I can’t make it to the bathroom in time. So humiliating..!!
I cry because you cry and there is nothing any of us on this page can do to take away upcoming tears from each other. I cry because it will be hard for some of us to remember the peaks when we are in the valley. I cry because “normal” life at times seems so far away. I cry because of the injustice in the simple fact that sometimes it all just gets too difficult. I cry because I am on prednisone and makes me miserable. I cry because I know I will eventually have to take it again. I cry because I do shots that cause depression. I cry because the evil but necessary drugs are the only options. I cry when I see the hurt my loved ones have because I have this disease.
Jenny, I cry because I no longer fit in
Hey Nicole,
(my website is: megansliger.virb.com, but the website panel won’t accept it as valid, even though it is)
BUT!…
I wanted to reach out and tell you how much this touched me. I used to be a business owner. A no-excuses, 15-hour-work-day Mama. An “I can do that” Warriorista, a x3-5mile-per-week-runner, an multi-jobinista. I was bad-ass. As recently as two years ago. Now I am awaiting insurance-repeal-approval for a wheelchair. I piss myself. I get exhausted walking home from school, and while I used to be a 15-credit straight-A student, I now struggle to get a’s/b’s with 6-9 credits. And I hate it. So as I try to recalibrate my personal scale for success, I read and re-read this post, and I feel more grounded. Thank you.
Why I am crying right now ? Because I have just read an intelligent and eloquent explination of why I usually cry and for the first time, I feel understood, really understood and less alone.
Thank you so much.
Elizabeth
Elizabeth, Thanks for reading! A days have passed, I hope you feel better! I release new blogs on Tuesdays!
Oh, same here. Same here. I feel understood for once. Thank you.
I cry too. I feel like evveryday im not allowed to just live life. Like im a danger or disease to the world around me. I try to smile but it trully is becomming harder to do. I accepted i have MS but i did not know that meant i was not alliwed to do anything. All i hear is how much worse it will get daily.
Christie, I truly understand and grieve right along side you.
Yes, too much remembering how phyically strong I was makes me cry, I took so much for granted 🙁
Dear Christie,
Making peace with MS was the most difficult part of living when I was first dx’d. It took me about five years to get to the point that my first thought when I woke up in the morning was not “I have MS.”
I understand your world, friend. I am holding you and speaking your name aloud when I pray…
I cry, too.
I’m emerging from one of the darkest episodes of depression that I ever thought possible. My neurologist recognized the reality of my depression without me saying a word to him. He stopped my MS drug therapy immediately and now I am in the process of switching to another drug. I have RPMS and was diagnosed 13 years ago.
Drug commercials on TV disclose side effects, including depression and suicidal tendencies; I believed I was strong enough spiritually, emotionally, and mentally to not be concerned with that kind of thing. In retrospect, 13 years of this particular drug therapy finally caught up with that aspect of my health. Thanks be to God that my dear neurologist recognized that I was in real trouble.
Now in recovery from more than a year’s worth of darkness (not just a “funk”, but the total loss of being aware and having anything to live for), I am trying to understand how and why things happened the way they did. I am trying to process the equation of the drug’s side effects + living alone + a year’s worth of disease progression and middle-age life events; and the scars, not caused by the MS itself, but the ones on my heart and soul. I am trying to understand why no one, including my own family, recognized the signals I sent up.
On the upside, the beacons of light are penetrating through the dark now and my inner strength is growing. I am going to make it because I want to make it; unlike before when I really didn’t care if if I made it or not.
Living with MS is difficult. Depression is difficult. Combine them, and crying becomes more than a Kleenex-pity party…it becomes the soul weeping and crying out to heaven for help.
Almighty God,
Have mercy on those who are struggling with the darkness. Surround them with loving people who recognize and attend to their silent and invisible cries for help. Bathe and nourish their soul with light in these times when they are unable to grasp your hand of hope. Defend them from empty words and platitudes and the uttermost loneliness of being misunderstood. Lastly, always be near, even when they cannot recognize your presence.
Deb, Amen.
Please continue to reach out when you can.I’m glad you’ve climbed out.
Amen and God bless you and keep you safe. May you always feel his arms around you.
Meandmyrrms, Thanks so much I post on Tuesdays except this last Tuesday when I was weak and tired but anyway I post nearly every week so come back bye for now.
I always cry from time to time for nothing..feel sorry for myself…thats been my biggest problem..I admire you Nicole and you have a fantastic husband…Im single only person who is my supporter is my youngest sister otherwise dont know where I be! Glad I found your site 🙂
Terry, In that case I’m glad you found my site too!Please know that I post new articles on Tuesdays, but please stick around and read My Story to the right of the page. Welcome
I don’t have a website. How will I find my way back here? Will someone send me a message? ?
Miriam, Yes, I’ll send you a message. You don’t have to have a website.
Thanks for what you have done. I’ve received your emails. I’ll be OK. Wishing you well in all your endeavors! God Bless You.
God Bless you MS is dreadful my daughter has it shes 44 had it for 12 years i feel so helpes because i cannot make it go away and i hate it?????
Judith, Thanks for reaching out for your daughter. Yes, MS is despicable, but honestly I wouldn’t know where I’d be without it. Please continue to check out the site. There’s a lot of info here that may help you. I do publish new posts on Tuesdays. Thanks for reading.
This is exactly how I’ve been feeling lately. I suffer from Fibromyalgia and Endometriosis, among a bunch of other weird things. I don’t even resemble the old “me” anymore I don’t know how to accept myself as an entirely different human being. I can’t believe how much chronic illness can change a whole person and make them, well, not whole anymore. I feel your pain, GF!! And I’m sorry you’re going through this, but I’m glad to see that you’re using you’re voice. You’re going to help a lot of people!!! xo
Rachael, Thanks for sharing. Thanks for your support I post every Tuesday.
Nicole, i think your site is awesome. I wanted do do something like this but between the flair ups, being so Very Tired and the cognitive problems …. I could not do this. So glad you can!!! I think your site makes us all feel a little less alone in our MS fight! I find you a blessing. I count my blessings that i did Not have before MS.
Nita, Thanks for visiting the site! In case you didn’t know we publish new articles every Tuesday. I’m so busy whining about my limited mobility, I forget to be thankful that I can even do this site! My husband and friend do play critical roles though.
This is a disease in which no one understands unless you have it.This seems to be one of the hardest parts is who are we now.We do have a chance to re-create ourselves.When God closes a door he opens a window.I’m glad I came onto this chat, I don’t think any else gets it.I hope your day gets better and open the window just a little bit it’s cold out.
Donna, I get that! Thanks.
I read your blog on Tuesday.
When I read this week’s Time magazine’s “Questions” with novelist Jamaica Kincaid, I thought of you. And myself.
She said “One doesn’t have to pursue unhappiness. It comes to you. You come into the world screaming. You cry when you’re born because your lungs expand. You breathe. I think that’s really significant. You come onto the world crying and it’s a sign that you’re alive.”
And so we cry
Heidi, What a fresh take on things. I get it.
Thanx Heidi, that is very inspiring!
I have cried so much through the years (dx’d in ’96), I have gullies down my cheeks!
I immediately thought back to the title of your blog..”My New Normals.” We can’t change the past, or predict the future. We can only accept the day and live the present. And when I see the photo of you sitting in your scooter, I see someone strong & accepting.
The best we can do is go on. Move forward. And remember the others who struggle with us.
Sock, You are RIGHT! And thanks.
I can sympathize with the entirety of this post. I some times think the only thing I have gained from all the symptoms I’ve endured is a greater sense of empathy for others’ experiences I will never share. What a trade…at first, it seems a terrible deal. Who wants to see the cake, hear about its taste and never be allowed to experience eating it?
Over time, I’ve some to realize I’ve been exposed to more than most, and maybe it just means I’ve come closer to the knowledge of what is “cake.” Without the exposure, maybe I’d never know or be able to relate to people whose “cake” defines their lives.
Some times, it seems I simply get to take the practical path when confronted with lives “Ewww Gross. Here you try it” moments. I’m spared feeling some of the bad too. Still, the separation is difficult and sad.
I try to remind myself some days the difference in Latin between “I hope” and “I breath” is but one letter. spiro to spero.
“I” am/is the difference.
Geof, I think I’m going through something like that with another MSer right now.
Oh how true! None of us is alone, though it sure does feel like it!
Jan, Yes it does.
Hi Nicole. This piece was beautiful and many can relate to it. However I must say I don’t see weakness or helplessness when I look at you, I see strength and courage. I read the stories you write, I see the pictures you post and the things you accomplish by giving MS a voice. I see a woman who still lives and hasn’t given up. Someone who utilizes what has grown stronger inside of her when other things aren’t as strong anymore. I see a friend.
Bonnie, Thanks. I needed that one.
These are good!!
Miriam, Do you mean the comments?
Hello Nicole,
you have been ever so gracious in the past with sharing your blog on our facebook group Restore Hope with MS (http://www.facebook.com/groups/233601936731069/) site and I had never come into your blog. I am so glad I did, for some reason there is something that catches our attention when you see true feelings and your title did that to me. Although I have a ton of things to do and am behind as usual I needed to see your post. When I started reading it I thought “I have felt that way for days on sometimes”. Then I paused and thought this is so common, it is how we MS’ers are all connected I think. I have written about it and the more people I talk to all say the same thing “I miss the old me.” As I transform with this horrible disease I have to say that I miss my best friend everyday…ME. I know that may seem self centered but I like her and really would like to get her back. She is missed tremendously on a daily basis by yep mine too … my husband, I know my boys miss her and my mother misses her every time she looks at me with those sad eyes. She is such an energetic woman, life of the party and full of life. When she looks at me that way I know she is thinking let it be me and not my daughter buy some things cannot be changed. I would never give this disease to anyone or even trade it for a day to get the old me back. So that only leaves me with one choice; fight it to the end. Try to educate, unite in numbers and if I am blessed in just touching one person on a daily basis I believe I have done my part. You my friend touched me today and I thank you.
Liset, Thanks for stopping by this time and I’d love to see you come back!
so true, so real, your words just expressed ME.. i am with you, we are together, though we are not close enough to hug, we are close enough to express how we feel and not too long ago we were just strangers. i love this post/blog it is so true, i pray we can find a way to feel more comfort, express more of who we USE to be, but with this disease I guess we truly are different people now and we must learn to embrace it, as hard, hard, hard, as it is. i am a fighter, but today i cried and felt hopeless at times, scared and weak, but tomorrow is a new day and i pray my strength will be renewed enough for me to move forward which is the ONLY way we can move!!!! xoxo i’m here anytime you need to talk privately, or just need a “computer hug” 😉
Michelle, Thanks for sending comfort through cyberspace!
Hello sweet Nicole, I think you are beautiful, smart and I love to listen to you. Just sayin. Hugging you tight.
xo
Olivia
Olivia, Thanks for the hugs!
You are a beautiful, gifted writer and nothing can take that away from you.~Denise
Denise, Thanks for the complement and reminder.
That grief reaction is something most of us feel, especially in the first years. It can still rear its head later, too. I was diagnosed with Secondary Progressive MS about 17 years ago. You describe the identity chaos so well.
I’m a psychotherapist now, and I treat chronic illness. Here’s a video I made that I wish I’d had all those years ago:
http://youtu.be/bqH0FG7AXUk
Tammy, Thanks I’ll check it out ASAP.
Tears are such a natural way to move your mind to its next level of finding your PURPOSE
Stephanie, That’s comforting to know that I may come out of this closer to the one thing I’ve wanted the most.
You know, friend, sometimes I forget to check in with you BUT I do think of you and pray for you often. A good friend of mine once told me that tears are the ointment of the soul, they give vent to what you sometimes can’t be expressed.
Love you much! *hugs*
Andrelle
AMEN…
Thank you Nicole.
Dennis, In that case you are very welcome.
I cry all the time. I get mad when my bf helps me nd when he doesn’t help me. Never satisfied or fulfilled. Can’t walk the dogs and apologize to them all the time for that. I feel pathetic and sad. Not an uplifting reply but a truthful one.
Leslie, I understand that too. But I refuse to go on this way.
Frustration seems to be an everyday emotion for me. Add kids to it and it is intensified!!! The “old me” would spank them for some of the stuff that they do, but when it comes time for that I end up whipping my own ass!!!! Lol
Shannie, I can’t imagine what this would be like with kids. Best of everything to ya.
This is a very powerful blog. You blow me away with your words. I felt your words in my heart. I too miss the old me. I am sorry you cry, I understand why you cry. I wish you the strength to cope.
Shannie, I can’t imagine what this would be like with kids. Best of everything to ya.
Lisa, Sorry for the mix up earlier, I got it together now! Sort of that is!
Nicole, my heart goes out to you. I’m sure there is a grieving process when accepting this disease, but I don’t think I have ever cried about it. When I was in the RR stage, it was such a relief when it went into recession. I felt lucky that it was not life threatening. Over the years, I realized it was a life altering disease. Now that I am in secondary progression, it is more frustrating and I did feel a sense of depression about losing my eyesight. It was not something I talked about even to my husband. I suppose that is why my reaction to getting my eyesight back after joining the MS study with Dr. Damadian and Dr. Scott Rosa has been so uplifting. I am optimistic that the future holds so much promise. I guess I always thought research would come up with a solution in my life time. Now, let’s just accept that I am shallow and superficial…and an incurable optimist, but I have always been more bothered by the challenges my disease has caused the people around me. You are doing such a great service with this website. As deminished as you are feeling, just give yourself a hug for what you are doing here. (and I want to add that you are a very attractive girl in spite of this dumb disease!) Linda
Linda, I’m happy you are getting your sight back! Maybe there’s hope for us afteral!
Don’t feel bad Nicole, we All have our bad days! I just think these new ones stand out so much because their fresher in our memory. I’m not the same either since my AVM and sometimes it’s so frustrating cause my husband loses his patience and snaps at me cause he remembers the old ‘Re’. Actually I feel sorry for him and if I could go back to being the Re her remembers, I would by all means!!! Cheer up girl, YOU’VE got more life to live!!!!!!! Embrace the new YOU!
Renecia
‘Re’
‘Re’ I’m trying!
I’m so sorry that this MonSter is causing you such sadness; however, I understand every word. Our old selves lie buried under the morass that MS causes our bodies to become. I cry sometimes, too, out of sheer frustration.
Peace,
Muff
Muff, I do like the idea that the true me is lying beneath.
You put it so well…. I miss me too. But trying to define what I miss is hard. I can accept my physical limitations as they come… it takes work but I can do it.
However, something inside me… my essence? my soul? Something… it’s different.
And I cry too.
Sherri, It’s ironic that you mention you essence…soul. I think mine is what continues to drive me. I think my dear you just made me feel better!
Oh, dear. I’m so sorry you are feeling sad. It may or may not help, but I’m an MSer who also is a hypochondriac (delightful combination, indeed). I’ve just posted something (with drawings!!!) that may make you smile. Sorry for the shameless plug; really, I’d just like you to laugh or at least smile for a minute or two…
Ms. C-P (aka Susan)
Ms. Pants, Well your plug worked. I went and smiled! That’s two for two!
I love your posts. I was diagnosed with multiple sclerosis in June of 2011. What you put into words so well is how I feel often. I don’t have the words, but maybe this will help me explain to others the feelings I have about this crazy disease.
Laurie, Thank you for reading. I’m here to help anyway I can. At your point in this journey was in deep denial. So you are already ahead of me so to speak.
Nicole….your words touched me very deeply and I am so sorry for your pain. So many people walk around and have their vision intact and their arms, speech, bladder and body moves and works when they ask it to. They are healthy for the most part but having never had a chronic disease most take good health for granted rather than praising God for such a blessing. You and I know that our health is perhaps the greatest blessing because without it every part of our lives are impacted. It seems like people in general don’t truly value the simple ability to get out of bed without assistance and get in the shower and make a meal and drive to work or take their kids to school. Why does it often take losing something for us to understand how precious something is…..like our health. I know from your words that you don’t feel like you because of everything MS has taken from you. Nicole…You are you. What you can physically “do” is very different but your soul and heart is the same…..only probably deeper and much bigger. One day our body is dust but our soul goes on and you will walk and run again and not have this terrible disease. Crying can be cathartic and sometimes a good cry is the best medicine. And you are grieving. I love you and am calling you right now.
Andrea, Thanks for that lovely reminder.
Maybe the most frightening thing anyone could say right now would be “The person you love having been is still in you.” It sure doesn’t feel like that’s the case… but I promise that the strong parts of her you feel without now are still there. We know what it’s like to not see properly — you are just overlooking her, and you will see her again. You are too strong and amazing a person not to. <3
Katherine , What a wonderful thing to say! Thanks so much for reading.
I hear ya Nicole. I hear you loud and clear. Grief the never ending process in chronic illness.
On another note- I love your boots! Gotta smile here and there to push off the tears. xo
Kim, Thanks they are one of my favorite. I especially like them because they don’t look like something someone in a scooter would wear!
Very well said!!! Its hard to stop mourning our old self. I have faith that she will come back to me.
April, What if the real you has never left?
Oh I feel for you…we do keep changing…..I want to cry some days too. I see my uncle have the same frustrations when trying to talk to us, after he had a stroke….it is so tough to see him like that
Kim, That must be tough for both of you.
Nicole,
I definitely relate to the stage that you find yourself in. I encourage you to be where you are — don’t rush to get through it, but take the time to find the lesson in it. There definitely is one for you. I am still in the midst of it right there next to you in my scooter! What a challenging experience this is…
I love this comment.
Linda, Thanks again for understanding. I’ll go ahead and feel my way through this.
Thank you for such an honest post. I empathize with feeling “broken.” Feel encouraged that that the NEW you gives inspiration and support to all if us out here sharing your journey. Like you I have always tried to be strong and independent. My MS has humbled me. But maybe that is o.k. Maybe a different strength or talent, like yours, will be revealed. You are a gifted wordsmith. Maybe your words will help others while at the same time create the new you.!
Marie, That would be perfect. A job well done.
Nicole, you hit a home run. Depression is an ugly animal & it is a partner of MS. It is very difficult, impossible actually to be the person we once were. It’s hard to do but we must re-invent ourselves & learn to not care/worry abt what we can or can’t do, what others may or may not think abt ourselves. As long as we have our family around us, well, they are the only ones who count! Have you considered medication for depression? I really fought the notion of medication, denied that I needed it or was even depressed. Finally at my last appt in october I relented (as I was crying & telling the DR I was fine!). I take paxil & I no longer have those crying spells. I hate to admit it, but it has seemed to have helped my overall attitude. You may want to look into it as it may take off the edge. I wish there was a medication that helped that well for the MS in general & the fatigue! Take care & have a great week.
Kim, wouldn’t that be great! By the way I’m already on Lexapro!
Hi Nicole,
This is a terrific post and describes exactly where I am with “my” MS. Why I put that word in inverted commas is because I dont want MS to belong to me, but it will be with me for everr so I guess it is mine.
What a blessing to have come across this today when, for the past couple of weks, I have felt exactly so. You have helped me to feel less alone, because although I have a very supportive husband and family, I do feel very much alone with this.
I was sitting on tne loo this very morning and said out loud to bobody, “I dont know who I am anymore”. So I am with you very much.
Accepting my “new normals” is an ongoing process, and very often a difficult one. I write poetry to help me.
Thank you for sharing this.
Good wishes to you
Christne
Christine, I’m glad you have an outlet. We all need one!
(((((Nicole)))))
Why I Cry: I cry because i not only have to fight the desease with all the surprises it gives me and takes back on a daily basis, but I have to battle the people whom I hold most dearly. My husband thinks that if he orders me around that he can keep the signs away, except he adds to that by belittling me in front of others or acts as if I am one big hypochondriact. My friends tell me what I want to hear and my younger sister over protects me. My older sister lives with enough health problems and doesn’t need mine. My son sort of keeps me at arms length when it comes to serious conversations. My long suffering best friend worries about me too much. I try to keep my standard health reply to Pretty Good”. My stepdaughter who works in the medical field helps me out tremendously. I am so tired of tiptoeing around those who push me when I don’t want ti be pushed. By the way I have NMO (Neuromyelitus Optica).
Lois, Sounds like you have a lot on your plate. Thanks for taking the time
reach out, which sometimes can be the first step in the right direction
I “cry” or don’t because, like Lois B. my husband who is really mostly good to and for me, kind of “orders me around” … I’ve been through a really rough patch with depression. Now, am better but, don’t have any endurance. . . . It takes time and effort, things I’m just now learning it seems after living 68 years! It’s hard for me to explain. Hope I can find my way back here later. I need this site.
Miriam, My husband tends to stunt my tears too! You are welcome back here anytime. I post new posts on Tuesdays but there’s a wealth of info here already. Just save and return to http://www.mynewnormals.com
Judy, Right back ‘atcha