Trying to live with "it"

I know, I know, everything you said is true and I do believe it...some days. But as I said lately it's harder to feel positive. Like you I held things together and did everything and I believed that was my worth, that's what I contributed to our family. Now everything is so different that I feel I have no self worth. My faith tells me differently but when I'm down I put up walls and don't listen to God so I'm not hearing what I should be hearing. But I THANK YOU for reading my post and writing back such a wonderful message. I will think about what you've said and try harder. Thanks again

I could have written your story myself, I have never read a post that sounds so much like my own situation.  I didn't want to take med's for depression either, but my doctor asked me to try Cymbalta because it not only helps with depression - it helps with MS pain - and that got my attention.

I still get upset, but not nearly as much as I used to and the Cymbalta has helped the pain.  I'm still working on the guilt of not being able to contribute as much as I used to. But I have my little dog that thinks I'm the greatest, even when I don't take as many showers as I should :-) I can't believe I admitted THAT!

I wish you all the best.  Reaching out like you have is a gift to me and I thank you for it.  I hope I can help someone through a rough day too - that would make this crazy MS ride a little easier to live with. 

Hi Mary Jane, I'm glad my story was helpful, in the six years that I've had MS I've only just posted to this web site within these past few months.  There are days I want to run away to somewhere nobody knows me and exist, then there are others I feel blessed to be here. Sometimes it's all about me, and others it's anybody else but me.  Trying to find the balance is what I'm trying to find now, as I believe that's the key.   How long have you had MS?  If you'd like to talk about it, I'd be glad to listen.  I too have a little dog, a 6lb papillion who doesn't leave my side, he is always there for me.

I'm glad the medicine is working for you and helping to make this journey a little easier.  Today is a beautiful day, the sun is shining and there's not a cloud in the sky.  My 2 week old grandson is sleeping peacefully right beside me, and my other 2 year old grandson is playing with his trucks!  For right now, at this moment, I'm forgetting about the MonSter.

Peace to you!

Glow, you were my first post to this site.  I couldn't sleep and was surfing around trying to find out what and how others were doing with MS.  Funny thing, it's easier talking to others with MS than most family - my husband is great, but I don't want to overdose him toooooooo much with my complaints.  But until there is a cure found it's about all I can think about some days - there's always the pain and fatigue to remind us.

I remember when I could 100% throw myself into a project, no problem.  I'd cook huge meals, go hiking and was able to keep up with my grandchildren AND help my husband run our business!  I could run circles around my husband, saying "hurry up slow-poke, why are you walking so slow".  Funny, jokes on me now - and I hate being slow, damn MS :-)

I've had MS for a long time, but diagnosed Jan 2006.  I'm 57 years old. I told you about my little chihuahua who is my shadow. What a lifesaver he is - makes me get up when I don't want to, and acts like a clown to make me laugh.

I'm glad to hear you had a sunny day and feeling a little better.  We have to keep trying to do what we can and hope the cure comes soon... what a day that will be!

*Love to all my MS sisters and brothers*

Now remember, God doesn't make junk.  We are all worthwhile and we are all entitled to have what I call "pity parties".  You get through it with the help of friends, this site, spending time in a place that is comforting to you, do whatever you need to; yell, scream, be mad at God, He can handle it; beating up your pillow helps.  Just remember that you have gifts to offer and maybe today you can't see them or you've forgotten them.  Make a list of all the things you still can do and then think of places where you can put them to use.  The big problem with this bloody disease is that you don't always know if you can keep your committments and I think that in itself is what holds us back from sharing our gifts.  I have spent most of my working life in social services.  I was a case manager working with seniors and disabled persons, not unlike ourselves, so I absolutely get being the one who was the doer not the one that needed things done for me.  I have to remind myself of things that I would say to the seniors about the type help they needed and was available to enable them to stay in their homes.  I would say, "everyone needs an extra pair of hands at sometime, think of the help as your extra pair of hands."  I think because women are so used to being "superwomen" and those roles define who we think we are, it is inevitable that we feel so down on ourselves.  I think I related the story to sherrys/momdukes that my youngest son was and often still is my port in the storm.  I had about a 6 mos. period when I was hardly able to get my self out of bed, I suspect it was only partly due to the pain & fatigue and good deal of depression.  When Conor was in gr. 8, he had a teacher who prided herself on the fact that all the students were afraid of her.  Now Conor wasn't and annoyed her to know end by asking questions.  I've always told the boys there is no dumb questions, it is how you learn.  Mrs. J. would get so frustrated with him because she too his asking questions as though he was questioning her ability to teach.  Which, wouldn't be too far off the mark but, he used to ask for the other kids because her ranting didn't appear to ruffle him which of course, made her act more immature than any of the students would.  My boys are in French Immersion, kids that are in these schools are fairly bright, so if anyone of them needed to ask a question, they really did need some help.  My son also had fairly long hair and it just drove her insane.  Because I chaired the school council in those days, I would often pop in as I didn't work far from the school.  She'd always carry on about Conor's hair.  Now Conor had 100% in math that year so, I very politely told her that when his marks started to fall due to the length of his hair, she could come and we'd talk.  What she and Conor's classmates didn't know was that bothered him immensley the way she treated everyone.  So, everyday for the whole school year he would come home and tell me what an "idiot" Mrs. J. was and did you know she.....  I would just listen.  Sometimes we would talk about how some things could be done differently but, most of the time he'd thank me for letting him vent and talk about other things or he go off to do something else.  One day, when I was feeling particularly unworthy and useless, he came home with the usual rant and, he then asked me why none of his friends could talk to their parents like he was able to?  I told him I wasn't sure but, I wanted him to always feel he could talk to me about anything.  He then gave me a big hug and told me how much he loved me.  He has not idea what he did for me that day.  I really didn't do anything except listen but, he sure thought it was important and that was one of many epiphanys I've had throughout the course of this disease. 

I decided it was time to stop feeling sorry for myself and figure out where some of my gifts could be used.  If you haven't already figured out, I can talk.  I've always done volunteer work and had wanted to get involved with the AIDS programs and helping homeless people.  I am now on the Board of Directors of our Regional AIDS Committee.  Because our clients can be so sick, people are very understanding if you can't make a meeting.  Again, I have to stop myself and remember my limits because I'd be wanting to do more and then not be able to do any of it and the circle would start again.  I hope my long winded e-mail has helped abit.  There is a wonderful book by Harold Kushner called, "Everybody Matters", had a couple of epiphanys while reading it.  You may find it helpful,

I'll keep you in my thoughts.  It's just as easy to look up as it is to look down and looking up is much more scenic than looking at the ground.

Take care.

SherryO

Thanks, it's nice to know I helped someone somehow. There is a lot of positive left in me, and I will try not to let the negativeness win! I'd like to hear from you and others how they honestly feel from time to time and how and what they do to cope when the monster gets the best of you...

Jule, EXACTLY!! Ditto to everything you said.  I have 4 daughters, 3 living at home, 1 high school, 1 college, and 1 who owns a dance studio and they do help when I ask, but I hate to ask! My husband is great too, the problem is ME! Forgive myself? Ya right! Anyway thanks for the message, I don't go to any support groups or have anyone around me that has MS so I pretty much keep to myself, except I've been writing on this and find it's nice to share with other msers.

Again, thanks and blessings to you too! I hope the cognitive part isn't taking to much of a toll on you, if you want some time, let me know what the monster has done to you, I'd like to hear.

Julie, SORRY I misspelled your name!!

I am sorry to hear that, do you have a good support system to help you?  What has changed to have a diagnosis of 2ndary Progressive?  I hope you don't mind me asking so many questions, it helps me to know what other people are facing and how they are coping.  Ya my pride is hurt, I just can't seem to let go of being angry of having lost so much to this disease.  I'd be happy to hear anything you are willing to share with me.

DEB

I'm not sure what the difference is either but after I write this i'm going to look and see then post again.  I'm very lucky that my children are very understanding and are willing to help, it's me who has the issues about asking for it.  I, too feel like I'm in a prison but as my daughter tells me it's of my own making.  We just had a very long discussion prior to me sitting down here at the computer and she is trying to make me understand that they just want to help me and they will do whatever I ask.  Have you sat with your children and talked about what your going through and how you feel?  I'll check back and talk to you again soon.

DEB

Dear MSandme1954 and glowing4times,

I had never heard the terms benign and malignant used to discribe MS.  I have read that some people only experience exaserbations once in 10 or 20 years and of course there are those who, unfortunately, suffer from Primary Progressive.  I wonder if the two extremes in the way that people's bodies react, deal with or not deal with whatever causes us to get this very challenging disease is what is being referred to by the terms benign and malignant?

Like everyone else, I have been very independant all my life.  It was me asking if I could help others, not me having to ask for help.  A very wise person in my life told me I had to get a new measuring stick!  She said I had to stop measuring my life by what I was able to do and start measuring it by what I can do.  In the beginning that was difficult as I didn't feel very useful to myself or my family.  I often thought they would not miss me because I wasn't a very active participant in their lives.  It was when my youngest son was 13 yrs. old that I was given one of the reasons that I'm still important to them.  Everyday after school for all of grade 8, he would get home and start telling me what a horrible day he had and what Mrs. J. did again that annoyed him.  Once he was finished he would say thanks for listening and go off to do something.  Many times he would stay and we would talk about all kinds of things, current events, MS, a movie he wanted to see, the list was endless and nothing was taboo (it has always been my feeling that if you don't ask, you won't know).  The comment that he made one day was my epiphany.  "Mom, why can't my friends talk to their parents like we do?"  Fighting back the tears, I told him that wasn't sure but, I wanted him to always feel he could talk to me, about anything, even how nasty Mrs. J. treated her students.  We talked a little more and I knew at that moment, God was showing me that I was worth more than I thought.  I should have known, God doesn't create junk!  My youngest is still my port in the storm on many days and I always thank him and let him know how proud I am to be able to say, "you are my son".  

I can't seem to find info on benign and malignant either.  As far as exaserbations, I've heard people get them often but that it doesn't always mean they have new lesions.  I'm going to my DR. this week I'll ask.

I cried when I read your reply, my children say pretty much the same things, they just like having me here to talk to or just to be with.  The problem just lies with me, I just want to be able to do things myself and I'm unable to so I get frustrated.

God is my rock, God is my savior and I know without Him I would be lost.  I fail where He is concerned too b/c I don't ask Him for help either.  But the good news is that I have been asking and I have been "praying aright" and it's working.

I feel God's hand in everything I do every day.  I've been walking better and feeling better and I thank Him for it, the praise and glory is all His.

Sorry I don't mean to preach but it helps to have faith!

Thank you for your story, I will share it with my children!  God bless you and yours!

We have been truly blessed with our children.  I am glad that your's feel the same way.  My youngest had hair halfway down his back.  He got it cut yesterday and I was more upset than he was.  I'm a child of the 60's & 70's and I am also lucky that my kids listen to much of the same music I did.  It is so cool to be able to talk about the music and know what we are talking about.  After the Beatles, my mother wasn't into the music I listened to. The first son my youngest (my Bob Seger, until he cut his hair!) learned to play in its entirity was Led Zepplin's Stairway to Heaven.  He was in grade 7 at the time.  I told him that when I was in gr. 7 & 8, Stairway... was often the last song of the evening at our school dances.  He looked at me absolutely horrified and said, "why would you want to ruin a perfectly good song by dancing to it?"  I told him to stop listening to his dad about dancing and smiled.  He'll figure out that other than being a great song, it was also long and therefore we were able to spend more time with our true love of the moment.

Take care and keep smiling at all the wonderful things we are able to watch in our children as they grow into adults.  This is another positive I discovered about having MS, since I can no longer work, I have the opportunity to watch the the interesting process of the maturing of teenagers.  We went through it but, living it and watch someone else live it is two very different experiences.  I always remember my mother saying that she missed not being able to see what we did during the day as she was a single mom and did not have the luxury of staying home.

Keep smiling.

SherryO

Sherry O,

  Wow what a story about your son, music, and your youth.  That's what it's all about right?  MS or not.  I'm learning to just "be" or exist and enjoy the moment too. 

  Not working does provide that extra time to be able to enjoy "life" and all its wonders.  I thank God everyday for it all.  Thanks for your post!

Good to hear from you.  How are you feeling?  I've had some bad days with pain, you gotta love some drugs!  Starting to feel better.  My neighbour is helping me get some things in order.  Bless her!

Just, before I end, one of the things I quite enjoy doing, I guess to my boys, is finding a way to embarass them in a non-hurtful way.  I owe it to my eldest at least, he works at McDonalds and if I go in and some of his friends are there, usually girls!  He introduces me as him grandmother when I have my walker.  I keep reminding him that payback is he.....

Blessings,

SherryO