How to remain positive?

[Nikkie05]

I was diagnosed after my twin girls turned 1. They just turned 4, so I guess I am coming up on 3 years. While I've been very blessed thus far that my MS has been mild, I have been in a bit of a funk lately. In full disclosure, it started when a mutual friend of ours went on short term disability for his MS. He had been my mentor and while I rarely spoke to him about MS, it was great to see him doing so well after having MS for 20 years. Seeing him struggle has been hard because I picture myself there. How does one stay positive? I find I am not as patient with my girls and I would rather stay inside with them than go outside to play because it is easier inside. Not a good thing with 2 young kids.

[BigA]

These are the sorts of questions we all have, which no one can answer - but I'll give you my take. I'm in a similar position as you - diagnosed about 3 years, doing well with some odd bits and frustrations but I can't complain.

But I do wonder what will happen in 10 or 20 years.There are so many "It was great until it wasn't" stories. We don't hear the really good stories so much either, but they are out there. We used to be able to tell ourselves "That was in the old days before they had DMDs", but that's been taken away as well...

As best I can tell. Keep active. Appreciate every moment. Additionally, I recommend doing a diet and joining a positive community such as the OMS community. There's no guarantee anything there will help, though there is evidence. But the feeling of taking control is a powerful one. I recommend the book and the website and would love to see you there.

http://www.overcomingmultiplesclerosis.org/

P.S. In 20 years, your kids will be grown anyway

[Westgrl]

Enjoy being able to go outside & play now. One thing MS has taught me, it's to enjoy life now. I want to kick myself when I think of all the things that I thought I would have plenty of time for later in life.

I always wanted to have kids, but never did. Never met the right man. I am 37 now and newly diagnosed with MS. It's scary, to wonder who will be there for me when I get older & possibly disabled. Rather than dwell on it, I concentrate on today. If I should be disabled 10-20 years from now, I never want to be kicking myself for spending my "good years" feeling sorry for myself or not taking advantage of my life.

So, that's how I stay positive, I live in the now & not the future. "What ifs" will hurt you more than the MS will.

[Jules A]

I'm not positive about my prognosis but I do believe like others wrote that doing everything I possibly can today and trying to really enjoy life now is crucial...probably not a bad philosophy with or without MS.

As I take the time to enjoy things like my early morning dog walks it is also bittersweet because I fear the time when I'm no longer able to do certain things. MS is not for sissies.

[Redwings]

Hi Nikkie:
Believe it or not, staying positive is a choice. Basically, what you get is what you fill your mind with. Staying positive means learning how to control your emotions, because if you don't, they'll control you.

Staying positive means focusing on what you want, not on what you don't want. It means focusing on what you have, not on what you don't have; what you can do, not on what you can't do; on solutions, not on problems. Staying positive also involves gratitude -- actively appreciating what you have and not pining for what you don't have.

Staying positive doesn't mean that you have to be up and positive every minute. That only leads to a false front that you and everyone else can see through, and the falsity will only discourage you. But it does mean that you deal with your down moments in a constructive way. If you miss your old life or become sad because you can't do something that you want to, then go ahead and mourn your old life and be sad about it for awhile. But after that, holding onto what you can't do or can't have is destructive. It only sets you up for failure. Staying positive means working through the situation and the accompanying emotions and then letting it all go.

In distorting Buddhist philosophy a bit here, people suffer because they form attachments to outcomes, including things they can't have and/or can't control. Staying positive means not becoming emotionally invested in outcomes. It does means doing everything that's individually and reasonably possible to obtain an outcome -- because the law of cause and effect still applies -- but detaching oneself from the result.

Staying positive means giving up on the notion of "fairness." Life isn't fair.

Staying positive means not catastrophizing about the future. You get what you fill your mind with, and foreseeing disaster and dwelling on negative things that haven't even happened is the opposite of positivity. If you see yourself in the future in the same situation as your mentor, it's OK to acknowledge that you're afraid. But it's also important to acknowledge that that picture isn't you now, and not to waste any more time on it.

And this is a concept that a lot of people who don't have self-control just can't fathom. You don't have to believe every thought you have just because you have it, and you don't have to succumb to every emotion you feel just because you feel it. Acknowledge them and, if they don't help or serve you in some way, let the thoughts or emotions go. Dismiss them the same way you throw out junk mail. You are in control of that, and it is a choice.

Staying positive involves knowing what you want, and not wasting precious time or energy on things that aren't important. If you can separate your emotions from a situation, you'll find out fairly quickly what really matters and what doesn't.

You might not want to play outside with your girls, but is that the same thing as absolutely not being able to? What do you want more -- having your girls have a positive memory of you, or having them remember you as being tense and impatient because staying inside was more important to you because it was easier? What choices/trade-offs can you make that might free up your energy for your kids to play with you outside? Is it more important than, say, fretting that every little corner of the laundry is folded perfectly, or ensuring that your girls know that you're relaxed and happy playing with them?

So, coming full circle, staying positive is a choice.

[Cat Mom]

Redwings, your words about staying positive are so true, I loved reading this post so much. I actually printed it and plan on sharing with my family. Thanks for your eloquent way of explaining it.
Jen

[alliesmommy]

Hi Nikkie05

I'm kinda with you. It is so difficult for me to stay positive. I've read all the response and I say YES!!!! I'm gonna do that or feel that way or yeah, that makes perfect sense, but the reality is that it is hard to stay positive, especially when you see people that are advanced with this MonSter and can't help but feel that will be ME someday.

The good news is that everyone's MS is different and you may not follow the same path.

Redwings is correct that staying positive is a choice, BUT it is harder to do if you're already one foot over the fence on the pessimistic side.

As you on an antidepressant? If not, possibly you could check with your doctor. I started one and it worked well but now I think I might need a tune up on it.

Good luck to you

[Susie99]

POSIVIVE?

IT IS VERY HARD FOR ME BUT MY HUSBASD KEEPS ME TO ME POSIVIVE EVEN THOGH I DON'T WHAT TO. DID U GO TO MS SUPORT GROUP CLASS? IT IS GOOD.

[sewhappy]

Wonderful post, Redwings.

You just made the front of my fridge along side Winston Churchill ("Never, Never, Never, give up") and Bono ("What you don't have you don't need it now").

[Nikkie05]

Thank you all very much for the inspiring replies! Sometimes it takes a friendly reminder that being positive is how one looks at it. I don't want those around me knowing that there are times this eats me up- I try to stay positive. I did end up telling my husband why I was feeling off and that seemed to help too.

Thank you once again for your support and advice!

[MissJo]

Hi Nikkie,
I just wanted to say that I completely get where you are coming from. I also was dx when my son was very young (8 mos), about 4 years ago now. I still have trouble keeping positive. The temptation to just curl up in bed is always there. Here's how I look at it:

My boys are what makes having MS tough (because of all the things that "have" to be done - pack lunches, drive to school, homework, clean up....) but they are also what makes dealing with MS worthwhile (for obvious reasons!). I do believe I would be in bed all day if it wasn't for how much they need me.

While it is always a challenge to be positive in an uncertain future, my boys need me to be. And I'd do anything for them!

Jo

[Tawanda]

It's tough!!!!!

Hi Nikkie,

While it is always a challenge to be positive in an uncertain future, my boys need me to be. And I'd do anything for them!

Jo

MissJo,
Do you ever wonder what you'll do to stay positive once your kids grow up? My DD started middle school this year, and my older sister's youngest is in college and she is an empty nester. Lucky for her, she is healthy and has an interesting job. What about us? And what about MSers without kids?

Personally, no matter how much I try to practice Yoga and "mind over matter", I would probably give up every other drug and vitamin I take before I would give up my AD!

[Thinkimjob]

With you there, Tawanda. (Yes, just got bad news, venting, sorry, stop scrolling down.)
I don't have any children. My family and my partner would be devastated if I didn't soldier on.
That's it, I suppose. It would be worse for them if I gave the game away.

[lemstar]

Just one more little optomistic piece: my first episode was in 1980, and my next one was in 2008. My symptoms are mostly sensory and balance issues, with some fatigue and strength problems, but I would consider it mild.
I realize anything can happen, but there are cases that just go on and on as mild.....so that's my plan. LOL.

Redwings--great post on positive attitude!

[knuckle]

I've had MS since I was 32 and am now 54.

I've worked my way through most of the MS drugs, from Avonex to Novantrone to Tysabri.

I've gone from optic neuritis and "ms hug" to foot drop to a cane to now a walker, a wheelchair and a scooter.

I've gone from a sales and marketing executive working with Fortune 500 clients to social security disability income, with an ADA discrimination lawsuit along the way.

My wife and I, celebrating our 27th wedding anniversary today, have raised two kids during the time. Our son, 21, graduates Columbia University this spring and will be headed to grad school after. Our daughter enters college next year. Paying for tuition has been difficult, but we fortunately planned ahead.

Good kids, we're proud of them. My MS has given them a perspective on life many their age lack. We are a tight family.

Last year, our neighbors across the street with two high school teenagers, a boy and a girl, their mother, aged 51 died of breast cancer leaving the father on his own.

Redwings is right, you have a choice to remain positive. You can let this disease claim your spirit or get up every day and move on with your life. Be happy with what you've got because there are so many people in this world who have been dealt a worse hand than you, so many.

It is unlikely MS will kill you. MS is a chronic disease that can be treated and the understanding of MS, new drugs, are rapidly accelerating. There has never been a better time in history to be diagnosed with this crummy disease.

When I was first diagnosed there was no Internet. No MS World. No Google. Also, not really any treatments.

Be happy with what you've got. I can't tell you the euphoria I would experience if I could go for a walk, rake leaves, shop for groceries, all those little things so many people take for granted.

Yet, I know there are people with MS reading this thread much worse than I, who may be bedridden, lost eyesight, are alone, financially struggling, abused, frightened...

You have a choice every day. And remember, your choice effects the lives of others who are around you. Who love you, who depend on you.

My wife...I can't begin to tell you what we've gone through. In sickness and in health is a marriage vow you really can't appreciate on your wedding day until it happens to you. But here we are 27 years later.

Finally, how you deal with the uncertainties of MS, both short and long term, will simply evolve. You may get depressed, angry, frustrated, but you will get better, stronger, more knowledgeable, in managing your MS.