How do you do this long term?
 

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!!:hug::hug:

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. :wink: 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. :D

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

I PMd you...:grouphug::grouphug:

I've discovered that even the people who seemingly "have it all" really don't.

The ones who seem to stay amazingly young looking usually spend an incredible amount of time focused on just that......and miss out on the truly wonderful moments in life. Who wants to spend 50% of their life trying to halt time....and the other 50% trying to keep up with folks who are much younger and faster?! :rolleyes:

I think most everyone has their challenges even if it doesn't appear so at first glance. Heck, even I don't appear to have problems immediately....but if you look long enough you'll see that I do.

For me, the solution is to be happy in the moment. Because this exact moment is really all we have. And if this is "as good as it gets" then I'm okay with that. ;)

Kitty, I'm not okay with my present moment. I guess Dejibo isn't. I often laugh at that very thing, the Buddhist concept of being in the moment. If the moment isn't good, it doesn't work. I do have faith that we will be translated into a better "moment", however.

It might be different if I could take mood-altering drugs or even "drink". I can't alter how I feel with any kind of substance, although sometimes I feel better after eating. I can't eat enough to feel really well, however, without getting sick. Metabolism is just not a happy camper. So...moments are not so good. But then, I do have happy times now and again. I sure wish I could take a drug, though. Or even a glass of wine, to alter my perception.

Bingo! 99% of the time I can talk myself out of my corner. busy myself with things, and stuff, or activities. I am ...as they say...in the meantime. That not here, and not there moment in life when you are not what you were, and have not yet arrived at who you are going to be. I am still in transition and trying to figure out Who and what I shall become. I am straining against my restraints and new rules. I am pushing back against this dread disease. And the disease is pushing back against me. I am in a tug of war and so far, there are no winners.

yes, it may have to do with the approaching 50th b/d. not menopause as I did that years ago with a surgical pause. I have devoted my whole life in service to others, and this is supposed to be MY time! instead I now give it in service of this stupid disease. I couldnt find the energy to take a walk today because I was so constipated my stomach swollen and bulging I just couldnt get past the tummy ache. I take enough meds that I am surprised my bowels ever work. it was gorgeous day and I sat inside waiting for things to move along.

I am being held prisoner by this, and as an inmate I am trying to find ways to entertain myself, but no one left behind any toys! Im bored with TV. I cant read with bad vision. I cant drive, I go more blind with the heat when I walk...I could go on and on.

So, for now. im unhappy. Perhaps tomorrow will bring a ray of hope. :(

I held on just until my 50th year . . . (I am now 60.) Then ulcerative colitis, Crohn's and peripheral neuropathy (which turned out to be transverse myelitis/maybe MS) set in. I hit my peak at 43-45, having worked hard to get myself in my best physical shape ever, eating a 75% raw and almost vegetarian lifestyle, and working out at least 5 days a week. I had just rejoined a gym when my colitis began, giving me symptoms that felt like a hip issue and making exercise increasingly painful. It was a fast-developing diseased colon, not a hip.

Did you know your colon holds your immune system in balance? Remove it and see what hits you.

Dej . . . I totally get where you are. My second grandchild will be here in 2 weeks, I have a great partner, an ok kitty cat, and a yard we have turned into a birder's sanctuary, even though it is tiny. But waking each morning isn't that great "new day" experience for me most mornings, as I awaken in pain and unable to think. I used to amaze my partner at how I would bound out of bed, into the shower and be bright-eyed first thing every morning. She is lucky now if there aren't daggers in my first eye contact with her . . . :(

I just saw my neuro for my bi-annual visit, and he confirmed the ankle and feet swelling is something he sees all the time, and that there is probably nothing I can do for it. I repeat my MRI's this fall, and will have to wait to see if my disease is progressing or if the Imuran I am on is keeping it in check. None of the pain or spasm meds work for me, mostly due to terrible side effects with my Crohn's.

I have spent over $400 on new shoes recently trying to find something that fits, accommodates swelling, and that i can actually walk in. Hiking 8-10 miles in one day used to be my recreation of choice . . . and now a quick shopping trip makes me hobble.

What is the worst, though, is that my partner has watched her life disappear right along with mine. Even if we won a huge lottery, and our financial issues evaporated overnight, we would still be terribly limited in what we could do. (Although, I would love to design the perfect home for someone with my issues . . . my bathroom would be out-of-this-world!)

So when I read a post like yours, my heart immediately opens up and hugs you. The other day I just wanted to crawl into my partner's arms and let her just hold me . . . but guess what? My body can not handle that for very long. If anything sucks worse than that, I haven't found it yet!

Sending hugs, love, hope for some moments of pure relief, pleasure, pain-free life. (((Dej)))

I think I am figuring some things out.

1. if my DH were to go away or something were to happen our marriage, as much as I love this dear man, i would NEVER have another man in my life. I think I would troll the gay bars till I found a good woman. Women tend to take better care of each other, and meet their emotional level needs better than woman/man couple in my not so humble opinion. I feel like I am ALWAYS compromising and waiting for it to be MY turn! I have been married 25 years this year, and while he is an amazing husband, he is making me crazy! He retired and is ALWAYS under my feet. I have no privacy or alone time. and when he is near I am always up and having to perform. im tired!

2. I would get a dog. We lost our dear MaggieMoon about 5 years ago. While my cats are wonderful and I have poured alot of love into them, I miss the dog. She was a reason to force me out for a walk.

3. I already eat great, and exercise every chance I get, BUT I would take a Karate class or swim lessons at the Y, or bowling! I love bowling and cant get anyone to go with me. BINGO! i love bingo but no one wants to go. I think one of my problems is that I am lonely. I had amazing friends, but like any other friends when someone has a long term illness, they tend to wander off. Some faster than others, but in the end 99% of them go. The ones that stay have their own lives to lead and cannot fill the hole the others left.

4. Even tho I really struggle with my family, I would take more time to go visit. NOT stay in their house, but drop in on a vacation to visit.

5. I would MOVE! I HATE HATE HATE this neighborhood! We moved into a wonderful house, that sits lake side, and we thought WOW! we have made it! This is how the other half lives. These folks are CRAZY! They bicker, argue, gossip, backbite, and nit pick till you want to scream UNCLE! I have one of them on a special ring on my phone, so I know without looking its her calling to tell me how back her life is. PLEASE go sit in your winter homes and leave me alone!

and finally 6. I know that I need to accept this disease, and roll with the punches, not fight against them. Some how I think rolling with them makes me a quitter, and therefore I fight. I know how to do cancer. You FIGHT! and fight hard! with MS you have to relax and let it be. if you fight it, it gets angry and wakes up. I need to find that fine balance between living my life, and allowing the monster time to sleep.

So... after a few days of rest and reflection this is what I came up with.

I do tip-toe around my MS. Never sure I could(or want to) handle more, so I don't want to wake this sleeping beast.

I have 3 cats and 2 dogs. Cats are easier (I have "5-year olds" moments with my dogs. Being a mother of twins helps me with them) but love my just turned one dog. She protects me fiercely but never bites (How she growled at wheelchair repair guy! - he has dogs, insisted she come in and understood her behavior. She is my girl and lets the world know.)

Moving is fun. Hard, but a nice clean sweep and change. We have 4 neighbors here on our hill, we nod and smile and that's it!!!

My SIL (we married brothers) and I swear that when they die, we'll tattoo "never again" on our foreheads. And we love them.

Yep my plan..Go with the flow and try to have a good time between PITAs..:D:p:D

Exercise when you can, rest when you should and enjoy the little things. :hug:

Oh Dejibo, please do one of the above! Go alone and keep going back. Although it might take time you will find someone nice to socialize with I promise. It took several months before I felt like I started getting to know the people in my Y spin class but now I feel like I even have a couple of causal friends.

Of course I’m always in favor of getting a dog if someone can afford to care for them properly and I have sworn for years that when my husband croaks or leaves me I’m getting a girlfriend…provided she will clean my house. :D

I dont drive anymore, so I need someone to take me, esp after dark. I handed the husband a bunch of buy one get one coupons out of the entertainment book a neighbor gave me and told him "I want to do these, PLEASE! find a way to make at least 3 happen" there is bowling, swimming at the Y, karate, dance lessons, bike trail stuff, and free bingo cards, and so forth.

so, yes, I think part of my problem is that I am lonely.

[QUOTE=Jules A;881369 I’m getting a girlfriend…provided she will clean my house. :D[/QUOTE]



Who doesn't want or need a wife or girlfriend (or mother!!)? They sound nice. I want a pretty one - they seldom get tickets either!!!

Dej, when most of my friends deserted me because of MS, I made my DH my best friend and we started playing more together. He actually enjoyed taking me to his haunts and showing me off and I enjoyed getting out and about more. We had fun and did a little of verything, while we could.