im frustrated with MS. Im frustrated with not being able to live my life, or get on with it. To be able to think my way back to living the healthy, active, bubbly, intellectual life I was leading. I cant work, I cant play, my friends have long since gone away, now sitting in front of a computer or TV describes my day.

So, the MD said I could see someone if I want. ok, great idea. Im going to go sit on someones couch and pay them $100 an hour to whine? I have already figured out my life is now and forever changed. i wont be able to do the things I want or loved to do. its a new life and I am the one who needs to adjust and find new things to love in it. So...there, saved myself thousands of dollars.

My family is far away (this is a good thing) and husbands family while supportive always do that "poor pitiful frank" thing when they talk to him. "hows the wife? you poor man, that must be so hard on you." He is a good egg, and doesnt whine, and altho I have offered him the chance to RUN! he hasnt . he said he is here for the long haul.

We will be married 25 years this year, and I will be 50 this year. Is this it? I did all my best stuff before I was 50? Had I known I would have flown more, sky dived, hiked more, instead of burying my nose at work. I retired early so we could travel and before I could make the first reservation the MD said "you have ms" UGH! I was so close!

So, how do you handle the change of life that has been handed to you because you now cant do all those things you planned on doing? I dont want this! I want MY life back! This is not MY life, this is someone elses that I read about in a magazine!The story of the week about some brave woman who soldiered thru. Well...i dont want to soldier thru any more! im tired of the pain, the aches, the uncertainties, the meds, the needing to lay down so many hours of the day when the sun is shinning and things need to be done, and I cant get up to do them.

Thanks for letting me whine.

It's a difficult transition that's for sure.

We all handle this differently. Some never accept the reality of it.

For me, personally, my faith plays a huge (well, the only) part in it.

I think we all ask the question "why me?". It's just human nature. But why not ask "why not me?". I look at it as this is exactly where I am meant to be. There is a reason for all of this. I might not know what that reason is right now.....might not know it in my lifetime.....but I accept that. I don't question it but strive to learn from it and recognize the opportunities to help others get through it.

Yes, it can be tough at times. Lots of times! For me personally, there have been things to happen in my life that are worse than MS. It's just another bump in the road. There are times I get discouraged but never for long.

I'm at peace with this. I can't explain it in just a few paragraphs. It's something that has to come from within. And I pray daily that everyone can have it.

Kitty - I love your answer.

Dejibo, I am so sorry that you are faced with this new 'reality of you; I can't dispense wise words, or even 'know' what you are going through - but I hear you and I wish I could help.

Hugs

Lyn

Dej,

I'm sorry you are having a rough time. I know how you feel. I too live away from my family but I don't have a husband. Being single is miserable by itself and add MS to it. Well actually dating. Who wants to date a chick with a cane and is tired before the date even starts. I self isolate because most people don't understand. I don't blame you for not wanting to pay $100 an hour to someone and you don't see a benefit. I don't really have any advice but do what you are comfortable with and what makes you happy. I hope you find something or something finds you to chase the blues away.

MG

How do I do this long term?

In my mind I have no choice.

I refuse to roll over and play dead for MS. I have known (diagnosed) of MS for 27 years but have lived with it longer. I get so damn tired of dealing with the ups and downs of MS. The older I get the more tired of this disease I get.

Everyone has different coping skills. How I deal with this disease is how I have always dealt with difficult things in my life...I just keep going.

When I read this and saw your age I thought of the "change of life" all women experience as we get older. As I am finding out it can be difficult to deal with the possible ramifications of MS and the transitional period of my life.

The two seem to colide at times. I don't know if I'm crying because I'm tired of this disease or because I am getting so close to the normal transition of life. Of course, There is always that proverbial midlife crisis.

Actually Dejibo, therapy can be quite helpful. You can learn alot about yourself and how the way you cope isn't working, as well as learning new ways to cope that will help. Don't discount this approach, it could be beneficial.

Wow! It does me SO much good to come to this forum, because I see others coping as I have to.
Dej, I used to have a good life too, although struggle with health was #1 from the age of 17 onward. i was a scholar who went to Stanford, an athlete (dancer), etc., and suddenly I was having an attack of something no one understood, which made "dating" and even getting through the first quarter of college almost impossible. Then I got better, for a while, got through college, etc. After a miserable first marriage of eight months, I finally married a really great guy, and we had a wonderful life--but that life, like yours, was impaired by my illness, and this was for ALL of our life together, 41 years.
Concerning your husband, please consider this the great thing in your life. However imperfect he may be (you don't say he is, but everyone is) he is loyal and "in it for the long haul." Please consider that this is an extraordinary gift from God. Not everyone has this. Look at Mocha, single and alone. I would say look at me, a widow lamentably alone, but I did have those years with a really great man.

After Irv died I tried to get re-established in Seattle, but fate struck me down hard and I had to come back here. But while in Seattle, I did see a counselor who was provided by my hematology clinic. He was the best counselor I ever had. He said that my life with Irv wouldn't have been the same if we had not had the struggles we did, that these struggle MADE our life.
Of course, you were married before the particular struggle of MS came along...no doubt there were other less drastic struggles earlier. So your husband didn't marry you knowing he went into this. However, nevertheless, his beautiful loyalty is to be prized as a pearl of great price.
As with Kitty, the most important thing in my life is my faith. Irv and I struggled together to find faith, through New Age participation (really heavy duty there) and back to traditional church, and I am now out of the church scene but still struggling to keep faith in spite of suffering and loneliness. I won't go into all that since that would be posting religious stuff.
I am where you are: FED UP! But we are here "for he long haul" and there is no other way, so Courage, Mate!

Dej, I don't add anything to what you're other Friends here have said, except my Okie Dokie and my hugs!!

I love this reframing and would agree you could do it alone if I thought you were actually buying into it and going to start experimenting with ways to find new passion in your life. My thought is you would be a great candidate for some therapy based on your already rational view of this miserable disease and the ultimate changes that are necessary to adapt without being totally miserable. Its also a plus to have someone supportive to brainstorm with. It sounds like you are motivated to change and just need some assistance in actually moving it along.

Sadly much of my previous life was based on the benefits of youth so MS at 40 was kind of like the icing on the crap cake for me but life really is about making the necessary adjustments as we age. We just have to do it earlier than most people, sigh.

Although those more optimistic might disagree what I would ask you to consider is that things will likely get worse for us as we age and our MS progresses. This makes is crucial to do whatever it is you can today even if it is only for 30 minutes before you need a nap. I have a long time friend who I often joke with when we look back at photos and say "dang and we thought we were and ugly and needed to lose weight back then" when in truth now we would love to shave off those last 5or 10 years and look that "bad" now!

Hang in there girlie. Life and especially life with MS isn't for sissies.

Jules!
I never thought I was OK looking, but now at 56 look at old pictures and think, "You idiot!". But we get no do-overs. At 56 I've gone through the change, been in a chair 3 years, am no longer a cougar mom. But the ones who count remained. Maybe that's as good as it gets. I read a quote "If you're going through hell, keep going." Uh, OK.

I love it! and have often thought the same thing "maybe that's as good as it gets" and so I have to be at peace with my lost youth as I guess everyone does if they live long enough.

Truth is I milked it for as long as I could and really have no business complaining especially since MS waited until I was already in the "OMG the lights don't go low enough to hide the fact that I can't pass for my early 30s anymore" phase at the time.

In any event like you said there aren't any do-overs so along we go, just at a much slower pace now, lol.