Making Sense of My MS, by Chris

When I was diagnosed, I told my employer. I was working at a law firm reporting to a paralegal. My work was in document production, copying thousands of pages, boxing them up, taking the boxes to different places. All of a sudden, my supervisor wanted me to be working at my desk more and not moving boxes that much. I wound up telling my boss that when I say that I can do something, I mean it. MS was on their mind more than it was on my mind.

When my MS comes up in coversation, and when somebody responds with things like, "What kind of MS—is it relapsing-remitting, is it primary-progressive?" Or "How often do you have MRIs?" I feel like I could hug that person. It's just like, oh, thank you so much for not making me explain what MS is.

I think people around me are really confused by my MS because I lift weights a lot. I think sometimes people wonder, is this really a problem, or not? Is this the sort of thing that he's faking?

Chris offered his personal experiences living with MS during the first-ever Real Talk. Real Answers. Web cast. Click here to watch the video and read the transcript from this event. Chris was also featured in an interview with The Society’s national magazine (Momentum, formerly Inside MS). Click here for additional information on working with MS.

Balancing a Successful Career With a Family and MS
Written by: Sarah, living with relapsing MS since 2002

I am 29-years old, a wife and mother of one. I was diagnosed with relapsing multiple sclerosis (MS) in the summer of 2002. I have gone through a lot of ups and downs wondering, "What I want to be when I grow up." It wasn't until my diagnosis of MS and the birth of my daughter that I started really thinking about my career.

To me, a career meant a good stable job from 9-5, with people working under me. It meant wearing nice clothes to work with briefcase in hand. It meant having an impressive title. It meant even though I might not enjoy what I was doing, it paid a good salary. It meant something my father could be proud of.

I had been working in an upscale restaurant since 2001. I was promoted from server to assistant manager to general manager. I finally got the "career" that I thought I was supposed to have. However, I worked 55 hours a week and was stressed out most of the time. I loved the restaurant business, but hated my job. I was, however, very proud of my accomplishments. Then, last July, I unexpectedly lost my job.

I didn't look at losing my job as a bad thing -- rather an opportunity to change a situation that I was not thrilled with. My husband and I made a very brave decision to move from Indiana to Ohio. I have to admit, being unemployed felt nice. Not working long hours and spending time with my family was a nice change, to say the least. Once we were settled and it was time to go back to work, I tried to decide if I wanted to re-enter restaurant management. It wasn't until I was in New York participating in the Real Talk. Real Answers. Living with MS in Your 20s and 30s Web cast event that I realized I didn't have to have an office to have a career. If you can believe it, I got my moment of realization when I saw the cowboy that plays guitar in nothing but his underwear in Times Square. In seeing him, I thought, "If he can have a career doing that...I can have a career at whatever I want as well." When I got home, I started working on opening my own daycare center. I have never been happier with what I am doing. I've learned that it is possible to have a career that you really enjoy with MS and a family.

Sarah offered her personal experiences living with MS during the September 2008 Real Talk. Real Answers. Web cast. Click Here to watch the video and read the transcript from this event. Sarah is also an MS LifeLines® Ambassador, where she provides MS awareness, education, motivation and hope to people and their families living with MS.

Managing a Career with MS
Written by: Denise, living with relapsing MS since 1994

I was diagnosed with relapsing multiple sclerosis (MS) 12 years ago, when I was 20 and still in college. I remember vividly thinking, "How will I be able to work and have a successful career with MS?" Although I've been on this journey for quite awhile, I still find myself pondering this question, but this time, I think differently. My question(s) now are more focused on, "What will I need as support to ensure I have a successful career?" The reality is, at times, it will be difficult to manage the symptoms of MS and have a successful career, but it can be done. I'm proof!

With a hectic work schedule (50-55 hours per week), I had to figure out how to balance my health and the demands of my career. I learned quickly that I could not function properly without adequate rest. So when I work over 10 hours a day, I schedule time the next day to catch up on my rest. For instance, I sleep later than normal -- I get up at 9:00 am instead of 6:00 am, or I go to bed before 8 PM with the intent to sleep at least 8-10 hours to allow my body the opportunity to reenergize. Now, it may sound as if I have this 'rest thing' all under control, but let me be honest and tell you that my body crashed from exhaustion one time and instead of me planning to rest, my body took it: I couldn't function for 2 days. Since then, I promised myself to be more conscientious in listening to what my body was telling me.

So, how do I manage a demanding career and my MS? Besides taking time to rest, I'm fortunate to have an employer that allows me to work from home and participate in meetings via conference call, when needed. If I feel as though I need to take a day off and rest, I do so. I worry about getting exhausted and putting myself at risk of getting sick. That said, I work hard to be honest with myself in regards to my health. It's important that you give yourself time to rest and relax, even during those very busy times in your life. For me, working with my boss to find that work/life balance has really helped me manage my career with MS. I encourage others to look at ways that may help them manage their career with MS.

Denise offered her personal experiences living with MS during the September 2008 Real Talk. Real Answers. Web cast. Click Here to watch the video and read the transcript from this event.

Balancing a Successful Career With a Family and MS
Written by: Tony, living with relapsing MS since 1990

Combining a successful career with having a family and battling multiple sclerosis (MS) all at the same time? Are you kidding me? Often, just finding ways of dealing with whatever symptoms I'm currently experiencing is all the challenge I can handle. So, how can I possibly fit in a career and a family as well? In a word: organization. Actually, let's make that 14 words: organization, exercise, sleep, outside help, an appropriate job, a loving and sensitive family, medication. Taking them in order; I have to schedule my time well by devoting a certain number of hours to work, some for my family and some just for me to rest and maybe work out a little. Saying that, don't run away with the idea I'm a fitness fanatic with a house full of walkers, jumpers, climbers, weights and big orange inflatable balls. I'm not. I simply do ten minutes of stretching exercises two or three times a day and play golf or hike whenever I get the chance.

I try to get at least seven hours of sleep a night, which can be difficult if I have a deadline (I'm a writer) first thing in the morning and need to stay up late, or if it's my turn to get up with the kids...at 5:30 or 6:00 am!

We employ a nanny for a few hours a week to come in and look after the kids while I work, and obviously it's important to have a job that enables me to continue working. If I had my heart set on high-rise construction or being an Olympic gymnast, it's likely I would have been disappointed, but for now, there's nothing stopping me from becoming as good a writer as I can be. I'm fortunate I can work from home on a freelance basis and get to choose the jobs and deadlines that I think work best for me.

I love spending time with my family. Sometimes I have no energy to play with the kids, sometimes playing with them gives me more. If I have no energy I read them books, or maybe watch a DVD with them. I'd like to be out running, jumping, throwing, batting, wrestling, cycling, boating or golfing a lot more than I am now, but I'll take sitting down and reading the "Hungry Caterpillar" or "The Wonderful World of Dinosaurs" any day.

Balancing my family, my job and my MS is not a perfect science, which I have yet to master and doubt I ever will. A lot of it happens on the fly, and much of the time I can do no more than hope it all works out. For me, what works well is looking after myself with a decent diet, ensuring I get proper exercise, sleep and of course medication. Being my own boss and having a job that I can do without jeopardizing my symptoms, and having a family that understands also helps. I've accepted the fact that I can't be "Super Dad" all the time (just most of it).

Tony offered his personal experiences living with MS during the September 2008 Real Talk. Real Answers. Web cast. Click Here to watch the video and read the transcript from this event. Tony also hopes to inspire others living with MS by sharing his experiences as a member of the MS LifeLines® Ambassador program, where he helps to provide MS awareness, education, motivation, and hope to people and their families living with MS.

Spreading Awareness of MS
Written by: Jason, living with primary-progressive MS since 2005

It's a cool, grey fall day -- I'm in Denver, Colorado. Tomorrow morning, I'm in a photo shoot for the National Multiple Sclerosis Society for their "Move It" MS Awareness Week campaign. Speaking of "Move It", I'm only here for one day and then returning to New York (where I live) to continue production of my documentary, When I Walk - http://www.wheniwalk.com, which is about my experiences having MS and exploring research being done about the disease. I started the film in November of 2007 and it will be in production until 2010.

New York is a crazy and fast-paced city. People moving quickly, car horns blasting and constant stimulation. I live in the East Village and spend my days working on my film. I am very lucky to have had a career for ten years as a filmmaker, starting when I was just 20-years old. At the age of 25, I was diagnosed with primary-progressive multiple sclerosis (MS).

Over the next three years, I worked on two more documentaries, and finished graduate school. Every day was a new adventure - will I be able to see properly to film? Will my walking be adequate to do what I need to do today? I learned (by trial and error!) that I didn't want to overtire myself and pace my energy for the day.

One day late last year, I said, "Enough is enough - I'm making a film about MS." I wanted to share my experiences about the often-misunderstood world of MS. I wanted to show what it's like to have MS as a young person. We face some challenges that aren't necessarily shared by the rest of the MS population: dating, early career path, young friendships, and balancing the future...the list goes on.

So here I am, in the middle of the production of "When I Walk," and I have to say I am so happy I've made the decision to create this film. Every day, I learn something new about MS, and about myself - things that I will be able to share with others through the showing of the film. What can I say as advice to young people with MS? "Stay strong and do the things you love to do! In my opinion, life does not stop with MS, it actually just begins -- the path may need to be shifted, but enjoy it. It's a great, adventure-filled path!"

Jason offered his personal experiences living with MS during the September 2008 Real Talk. Real Answers. Web cast. Click Here to watch the video and read the transcript from this event.