Full and Happy Life Despite MS

[Mamabug]

...

I follow a number of MS boards/forums, but I feel guilty about posting because I know I have been extremely lucky with respect to my disease course. I'm thinking these boards may be biased toward suffering if others have similar feelings as me, so in honor of my friend and her struggles, I would like to invite you all to post your achievements despite MS.

Thatgirl --

I apologize for my part in turning your positive thread into an argument with another member. I'd like to turn this thread back to how you started it.

I choose to be happy, despite MS. And, I choose to be as productive as I can be, despite MS. Although I receive SSDI, and I had to "retire" at age 46, due to disability, I try to get out regularly and frequently to volunteer in my community. My current volunteer activities include volunteering at Circles of Hope (a program that works to end poverty in our community), a local preschool, and my church. I'm currently in training to volunteer as CASA (Court Appointed Special Advocate) volunteer, and, until recently, I volunteered in a nursing home.

[SNOOPY]

Hello Thatgirl,

MS does not have to mean the end of life as you as you know it.

I agree.

I have had symptoms of MS since childhood, I was not taken to a Dr. or taken seriously by my parent, I learned to just deal. I grew up believing everyone experienced what I did. I started dating my husband when I was 18. There were a few times I fell (falling has always been "normal" for me) when we were going out and I was in a dress, no less When I was 20 we got married. Three months after getting married we bought our first house. When I was 22 we move to another State as he had been promoted to new position.

At the age of 24 my husband was out of town on business. The lawn needed mowed and when he was out of town I took care of it. It was the first cutting of the season and still cool out. I started with the back yard and was unable to finish due leg weakness, difficulty walking, tingling and really bad fatigue. Felt fine by morning and went out to finish the mowing. That is when it became very obvious to me something was very wrong. What I experienced the day before came back worse with more symptoms adding day by day.

I was diagnosed with Multiple Sclerosis at the age of 24, 3 months after the exacerbation started.

I gave my husband the option of leaving me, that I would understand. He got angry and said he was not leaving me. We have now been married for 33 years (34 years May). We went on to have 2 children who are now 23 and 25 years old. Our children didn't know about my MS until certain questions came up when they were in Middle School.

I have always tried to live my life as normal as possible. Unless you know me it would be difficult to know there is anything wrong with me. I came to these forums in 2004 when my life was falling apart due to Post Traumatic Stress Disorder. I was broken(shattered), depressed and suicidal. I came across MSWorld by accident. I stayed because I found helping others gave me purpose and a way for me to forget what was going on within myself.

I will be forever grateful for finding this site.

I have a friend who was diagnosed with MS a few months ago. She knows what this disease is as she has some family members with MS. She told me she hopes her MS is more like mine than her family members and that I am her inspiration (I really don't want to be an inspiration, I am very uncomfortable with that concept). We met when our son's were in Cub Scouts together in first Grade.

I'm not saying I don't have my difficulties but I have learned to ignore many things and for the most part I live a fairly normal life.

Thatgirl, I have also had a "Full and Happy Life Despite MS."

Take care

[rdmc]

I follow a number of MS boards/forums, but I feel guilty about posting because I know I have been extremely lucky with respect to my disease course. I'm thinking these boards may be biased toward suffering if others have similar feelings as me, so in honor of my friend and her struggles, I would like to invite you all to post your achievements despite MS.

Here's my take on what you're seeing and experiencing on an MS forum, this MS forum.

The forum is a place where MSers can come and tell the truth.

If the truth is good news, accomplishments, successes, don't feel guilty about it, post away.

If the truth is depressing, or hard, or heartbreaking, don't feel guilty about posting that.

Over the years I've realized that for many this is the only place they can come and tell the truth
about their emotions, physical struggles, and the pitfalls of dealing with the disease.
Sometimes one can't be completely honest with family, or friends.

So we shouldn't be ashamed, or guilty, either way.....the forum exists for all those on
their MS journey.

[poppydarling]

Forums like this one were invaluable when I knew nothing, but they quickly became overwhelming and discouraging when I considered what the future may hold. My friend is considering giving up on her degree when the light at the end of the tunnel is so bright, in part because of the antidotes of patients she reads online. I wish there were more positive antidotes posted as well.

I think it's so kind and thoughtful that you want to encourage your friend. Feeling positive and hopeful is an inside job, though, with many life experiences and (often painful) personal growth that go into getting there. And it's okay if we never get there, too.

Worry just means that we're living in the future--which hasn't happened yet and may never happen in the way we envision it--not the now, which is all we have control over. And comparing ourselves to other people is never a good thing, anyway. What we need is more acceptance, of ourselves and others, at wherever we find ourselves on the journey.

[Mamabug]

...

Thatgirl, I have also had a "Full and Happy Life Despite MS."

Thatgirl and Snoopy. Good attitude!

[aisunnen]

Happy for you, but...

Dear That Girl,
I can empathize with all of the above posters. I'm the first to admit that I'm envious about all those things you can do that I can't do. I certainly don't want the next person to get dx-ed. And I want for you to be able to continue your very active life. But sometimes it is hard to read about marathons and hiking trips, and my evil twin wants you to stop "bragging." Which I'm sure you aren't doing, it's just a different life from what's happening with me now.

I take courses at a local college. The students are fabulous with me, helpful and accepting. But they have very little understanding, if any, of disability, aging, or death. They will, unfortunately, some day, but there's absolutely no hurry for that! And once upon a time, I was also 20 years old and invulnerable, so I got my turn. So bravo to you for all the things you do -- enjoy them to the max!

[4boysmom]

I have never quite understood why one would be upset about reading how others can do "such and such" and they can't. People would think you were rude for complaining about posts where one just comments on their aches and pains, so why be upset when someone says they can run in marathons?

I think what is meant by a positive attitude is really more a 'peaceful' state of mind. My opinion, and I emphasize MY opinion, is that those who struggle finding good in life would probably have that problem with or without MS. I haven't heard too many on this forum say they are solid financially, have prepared for their future, have good insurance, but now lament how unfair life has been to give them MS!

That is not to say that you have to be rich and secure to have a good attitude about MS. You just have to be the type of person that sees the beauty of life itself. I will continue to be inspired by those that can have this disease and still do lots of activities and fun things. It helps me to know that I have hope! And if not, I can be happy for them.

[Thinkimjob]

I don't think my life is as full and happy as it might have been, if I didn't have MS.

Did not marry or have children, because I knew it was unlikely to end well.

It is my life, and I'm alive, and that's as good as it is ever going to get. Brain still works.

But you know, it's been basically 20 years. Could be worse -as Grandfather used to say, "you're a long time dead."

And I'm sorry, but I really can't do the happy-clappy stuff anymore. As I said, though, 20 years and I'm still standing (not for long, mind).

[pennstater]

4boysmom,

I do tend to agree to a point, but its not so much that I get upset that people can do all that, but more how non-educated people respond to that and insinuate or state that anyone with MS could be like that if they just tried harder4.

I do like what you said about optimism and peace of mind. When I feel mysrlf slipping, I let myself feel it for awhile, then work on my gratitudes, read some inspirational quotes, and get back to living, enjoying what I can.

We each have our own personality traits and they are not going to change drastically. But people with chronic illnesses can get worn down and they may respond differently than they would have before. Why that happens to some and not others, who knows? It could even be the MS itself, changing our brains.

And to all of us, we all have a right to feel what we do. There is no right or wrong. We should thank those updating us on research, congratulate those doing well, encourage those struggling who need encouragement, empathize with those who need understanding, console those grieving, rant and rave with those pissed off, provide differing opinions when pros/cons needed, and continue to offer our vast and opposite experiences with MS and life.

I do sometimes feel like there are posts on this board where posters forget there are people behind the posts with real emotions. It sometimes seems like people want to bring an upbeat post down, and a down post up. It is the danger in written word versus actual conversation and our own personality traits kicking in. Reading the above, I guess I need an MS World break.

[Mable]

Hi That Girl!

IMO, this is the wrong place for finding what you're looking for. A better strategy for me has been to ask people you know who they know with MS. I've met about 5 wonderful women with the disease networking that way--all in their 60s and 70s. They do great. There's no obvious cognitive issues, they're taking care of kids and grandkids, and they are happy, productive people. If you can meet a couple people who have taken Lemtrada early in their disease, you'll also find happy success stories. They're out there if you look for them.

[Sir-Voor]

Hi thatgirl,

Hi thatgirl,

I also been lucky with my MS, in fact in many ways I say I have been blessed. It has not been easy but wow what a ride!
It started in Jan of 2001 when I got laid-off from a high-stress and long hour job, and could not find work for 5-months. And I lucked into a state university job that was low stress and easy hours, it was a pay cut but I always been able to work my way up.
A year later I had three short muscle spasms, normally I would have not seen a doctor, but because my new job have really nice insurance I went to a top neuro for what I thought was a pinched nerve.
And Surprise! Surprise! Surprise! It became clear getting laid-off and new job was the answer to my prayers even before I knew what I needed.
Because the university prefers high-turnover rate instead of letting employees work their way up my carrier prime earning years that have taken a major hit, so not all good.

Over the years I progressed to a drunk-walk, brain-fog, etc, and too much fatigue to keep up with home/farm maintenance, but lucky my loyal wife (who is also a nurse, and that has been a blessing), faith and pure stubbornness I been able to push on. The brain fog actually helped me, with-out even realizing I had it I was it to look inward and grow spiritually.

And I guess I had grown enough because in 2010 I started Ampyra, and WOW I have what they call a super responder. Bye bye drunk-walk, brain-fog, slurred-speech, and more, it’s a strange place to be. I don’t feel strongly connected MS community, nor part of healthy community.

So now I’m pushing myself and embrace life, catching-up on years of poor home/farm maintenance, fighting my MS, and even taken on a giving back project. Last year I discovered a cemetery in the woods next to our property, had stop being taken care of about 7-years ago, so I have been cutting down and hauling away young trees, clearing brush and mowing.

So for now I have what I consider a good life.

[just1yogi]

thatgirl,
You said, "One of my friends has recently been diagnosed with a degenerative neurological disorder". What kind of disorder is it? I have worked in health care for 36 years and have seen the results of many "neurological disorders" and some of them make MS look pretty good by comparison.

I was diagnosed with MS 15 years ago, but I realize that it had probably been creeping up on me for at least 20 years. I, like you, consider myself very fortunate. I have had to give up running however. In the last few years "running" has been reduced to a slow jog. But I can keep moving. I truly believe that keeping moving even if it is a struggle is important.

Keeping the mind challenged is even more important. My job requires that my mind is working constantly and I have been able to stay ahead of the curve with cognitive issues. Even though there are times that I cannot even remember the names of my employees. Those long pauses when I am trying to talk to someone have become more frequent and embarrassing.

I thank God everyday that he has been with me through all of this. Growing spiritually has allowed me to set aside religious dogma and to accept that every thing happens for a reason. This has made all of the crap that MS has brought into my life much easier to take.

All of our experiences are so different with MS. And this site is one of the ways we know that. I have learned so much on the MSWorld site. It has given me an understanding of how fortunate I have been, and has taken away the shock as my MS has progressed and I realize that others have survived these very same things.

Thank you for taking the time to post.

[aitch10]

4boysmom,

I do tend to agree to a point, but its not so much that I get upset that people can do all that, but more how non-educated people respond to that and insinuate or state that anyone with MS could be like that if they just tried harder4.

.

This. Totally this. I love hearing about people's successes and how well they're doing, but when someone states that they're doing well because they're "fighting hard" they're assuming those of us that aren't doing well aren't fighting hard, and to that I say ***.