I'm a 54 yr. old woman trying to live with MS. The first year I did fine, but then the second I got discouraged and impatient, and this third year I've been doing poorly. I try to be positive but there have been so many things this monster has taken away from me, I'm finding it harder to see the bright side. I sometimes want to go to a place where no one knows me and "exist". I hate to be so needy and feeling like such a burden. I've always been the caregiver, I've always done it all, and now it seems everything has been taken away. My doc has offered to give me meds for depression, but I refused, I hate taking medicine as it is so it's probs my fault. I just seem to be more annoyed with myself every day. As much as I try to focus on what I can do (which doesn't seem to be much) I go to do something and I'm quickly reminded about everything I can't do. I fall a lot and then I get even madder at myself for being so stupid and falling. I know there are people out there much worse than me and I feel for them, but this is me or it was me. So I guess I'm in a bad place. Does anyone every feel like this?
Yes, Glowing4times, I am right there with you. I was such an independent person, whatever I wanted to do, I did it, wherever I wanted to go I went, now I am at someone else's mercy. Not a good feeling I know. But in life everything happens for a reason, we do not know why it just does. We may never know why, but we just have to accept it. The best thing that we can do for ourselves is to stop trying to figure it out and just go with it. When we realize that we are not super people I think that we will be better off. I think that it is something that we have to work out within ourselves unfourtantly. Just because we need help does not make us weak people, I thought it e=did but it does not, I had to realize that everybody needs help sometimes, even me, superwoman. I was use to helping people, now the woman that was always helping, was now needing help, my how things have changed. Now for me that was a hard pill to sallow, and I am sure it is the same for you. But we will be fine. Even in the state that MS has put us in, we can still lend a helping hand, just in a different way, we just need a little help in being in charge. So you see it is not the end it is the beginning in just a little different way.We are still the same person, only just a little bit different and cuter I am sure of it. I hope that this has helped you, it sure has helped me! Sherry/smomdukes
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