To work or not to work, that is the question...

[Thinkimjob]

My job is poorly paid and stressful, but it gets me out of the house and it's kind of fun. It's only three days a week, at a little newspaper. I'm certainly not doing it for the money.

The doctor thinks I really should quit and devote every waking minute to my health.
She thinks my MS would improve.

I think the MS would probably do what it was going to do and I'd be bored out of my mind. At the moment, trips to the doctor, the pharmacist and the neurologist are just about the only reason, apart from work, I leave the house.

Also, the time will come soon enough so I'd rather wait to be pushed, than jump.

I've had MS for 17 years and I've always worked - not full time for the last eight.

Do you still work? Would you work if you still could? If you quit or had to quit has your MS improved?

[Marco]

I worked from the time I was 12 and never planned to retire. At times, I worked two and three jobs trying to build a successful career and then my own business. My job was extremely stressful providing 24/7 support to users not only in different time zones, but in 5+ countries at any point in time. For years I felt myself slipping and made every conceivable change to help me continue. It got to the point where I had to write check-lists to perform even basic tasks, but I continued determined to help provide for my family. In 2012, all that changed after a difficult flare-up leaving me incapable of working. What I had spent decades building was gone in a matter of hours.

It was hard, but it would have been even harder if I thought I could continue and wasn’t being allowed to. I knew (and had knownfor some time) that I was no longer productive. Even after being released I did my best to continue to work, but it just wasn’t possible. My neurologist and primary care physician put an end to things and that was the right decision. Struggling to work was literally killing me and it took others to fully bring it to my attention. I can almost guarantee you that you care much more for your contribution than their concern for your well-being.

Since that time, I have been focused on my physical well-being. I have made significant improvements, but still far, far, far from where I started before the 2012 flare-up. In retrospect, I probably should have made dramatic changes before that time. I would suggest you consider a sabbatical of a few months to personally experience the difference. I do wish I could work, even part-time, but for now I need to continue to work on my well-being. I wish you well...

[misslux]

I am lucky enough to be self-employed and work from home. I think I would sink into serious despair when the time comes that I can't do ANY work or volunteering.

Stopping working is unlikely to improve my MS, so I am going to work as hard and as long as I can.

[J-Bo]

I work, and guess I will as long as I can. What I really wish is that I could work part-time. Life seems an endless cycle of working, going home and collapsing with nothing left to do anything else. Then on weekends, going until I drop, trying to get everything done that I couldn't do on the week days. I never get it all done. How I wish that I could have even one extra day to take care of everything, and maybe even do something fun.

[humhon]

I worked for the first year at a more than full time stressful job. My employer did everything they could to help me be successful in my job but I continued to decline till I was using a wheelchair to get around. I finally decided that sleeping, commuting and working was not enough of a life for me.

It was very hard to quit working and I did experience some depression during my first year of not working. I was lost without my career and struggled with how to find new ways to feel like a productive member of society.

Well, I got better with lots and lots of rest and some therapy. Volunteer work has made all the difference for me. I met a group of women 20 years ago volunteering for a Botanical Garden and we travel like a pack between different groups we like working for. My duties vary depending on my health. Everyone knows I have MS and things can change from week to week but there is always something I can do.

I found I had so much more energy to try new things that I would never have had the energy to do if I had continued to work even part time.

It is a decision only you can make.

[Cat Mom]

I tried to return to work in 2012, part time, my neuro authorized 2 x 4 hour shifts per week. Due to the beurocracy of LTD rules, I couldn't do it. A return to work is with the intention that it would eventually be full-time. But if I couldn't get to full time, I would be considered a part timer = cut off benefits!

My pay, medical and dental for me and my big family would be cut off. I couldn't take that chance, so I'm basically retired at 48.

Between you and I, there have been many, many days that I've thought thank God I don't have to try to work while feeling like rubbish. I take peace in knowing that I was well enough to attempt it.

Jen

[pennstater]

I was like J-Bo off and on for a few years. Then in 2013, it was never ending. I never had a break except when I was out on short term disability. I would go back to work, and within two weeks, back to feeling like crap. I was even allowed to work from home as much as needed. When I could no longer recover overnight for the next day and eventually, had so much weakness that I could not lift arms, it was time to stop.

I think a lot depends on the work you do and your symptoms. Work took too much out of me.

I have been home now for 6 months. It is a big adjustment. I had planned on volunteering, but recurrent bronchitis and sinus infections delayed it. It is a challenge being home, but I make sure to talk to friends and family, get out for a walk, and try to challenge my brain a few hours each day. But if it weren't for our dog, I would go nuts.

All that said, my MS symptoms are better, at least the ones that fatigue impacts.

[Tomjadg]

I still work at a desk job, although it is getting harder to walk into work. I need the medical benefits for the $40,000 a year Ty.
Like you, I would be bored sitting at home every day like I now do on my off days. I also make decent pay.

I am now looking at a scooter to use at work, and the building manager was kind enough to offer me to keep it in her office for me to use. We figure we can retire in 5 more years.

Other than less stress, I doubt that not working has any effect on MS.

[KatieAgain]

Retired at 46. I was a workaholic....worked since I was 15.

It was incredibly hard to retire. I was forced into it.

So...I had to completely reinvent myself. And I am not bored. I have a couple of in home hobbies, I get together with friends twice a week, I joined a Club that meets one a month and I volunteer two days a month.

Mix that up with doctors appointments, grocery shopping, hair stuff and all the pity parties I have...pretty much fills up my schedule. And of course my favorite TV shows like Survivor and Game of Thrones.

At the age of 50, my MS is such that it is very unlikely that I will see my 65th Birthday. When one has been told that, and accepts that, life takes on a new meaning.

I spend every single evening in my glass Florida Room with my little furry four legged guy sitting next to me in my favorite recliner. We watch the most beautiful Sunsets over the water and all the various Wildlife settling in for the night. I am grateful to have such a view. It gives me something to look forward to every day. Right now I am anxiously awaiting the birth of two SandHill Cranes and I can't wait until they make their entry into this World.

Retirement does not mean you stop living.

[freeinhou]

I worked the whole 26 years I've had MS. Lots of hours and I would consider it stressful work.

I retired last month. Not for health reasons but it was getting harder to get around on the job. I was one of the mission managers at NASA Johnson Space Center and worked in the mission control facility.

With MS, I designed and built so many schools, labs, drawbridges, factories, courthouses, just things. I also worked at a nuke plant as a reactor operator and was the bond engineer at the Port of Miami for 3 years.

The MS is progressing. Nice and slowly, but progressing. I don't know if stopping working is going to change anything but I'm more busy now with getting moved and selling the house than when I was working at NASA.

I don't think the working/not working aspect is going to have anything to do with my MS.

Tom

[AnneLouise]

No. No I don't work anymore. Would be so nice if I did because then I would still be driving and shopping and taking care of my trails in the woods.

If my ms did improve it was only because I didn't have the stress of getting there then the stress of doing my job and doing it safely. I had the most supportive boss in the world, but I just couldn't do it anymore.

Like you say, ms is going to do what it will. At first, I thought I had jumped, but now, I'm so thankful I did stop working when I did. I had more mobility then than I do now. I worked for nearly 3 years before I quit. My dx was in those 3 yrs as well, though I know now I've had ms for 30 years. I thought I would always work, too.

I do know that life is/was much less stressful,for me, without having to go to work. You might volunteer. Other volunteers may be more understanding....

[Strhuntrss]

When I read this and the other posts, I saw myself in the mirror, so to speak. I worked full time for 28years. Retired because of my health and a possibility of a potential down sizing. Took a big cut in pay, as with a pension it is not enough when you still have bills to pay.

Took off a year of work. Found that it was good for me health wise, but as others have said, I was bored. You can clean the house, do laundry so much and then, well ... now what to do.

I thought I would go back to work, only this time, part time.

Well . . . part time consisted of 4 days/36 hours a week. The schedule fit around my husbands work hours and I could spend more time with him. Home on the weekends.
Weekends consisted of traveling and activities that put me on the go, go, go. The work was repetative and fast paced like my career job of 28yrs was. (WHAT WAS I THINKING)lol.

Took time off because of a viral infection and it put me down. Had time to think and again faced with a decision. To work or not to work, that is the question, right? Mmm.

I told my boss I couldn't do the work anymore and it wasn't fair to my other co-workers that I couldn't keep up let alone the call offs that were accumulating. He was so accommodating and he understood. He wants me back if I ever want to come back and work for them, even if it takes a year.

I have a house in another city (before I married) that until I can sell it, I have to pay the taxes and the utilities, hence the reason to work and make money.

Onto job number three. It is assisting seniors in their home 2 days a week/5 hours a day. I've worked this for a week now and will see how it goes. Tired when I come home, but managable.

My sx's get in the way of my life but some are managable. Fatigue is the worst and I have to find a way to manage it better. But, for now, I will see.

This is long I know and I'm sorry for it. But my advice to you is that, only YOU can know what you can and can not handle. We can relate and listen and help in any way we can, but it is you who knows what is best for you.

Maybe, someday I will know that myself. I am a bit stubborn and it is what keeps me going or it is what gets me into trouble, lol.

May you find what works for you and gives you peace.
May God bless you and guide you in the decision you will make. We love you and care about you!

Let us know how it goes!

[Jules A]

I also think my MS is going to do what it will and, for me, the stress of not having my income would make me a total wreck. Like a few others mentioned my life consists largely of working and sleeping to replenish my batteries on my days off but I'm content with it like this for now.

After my diagnosis I went back to school for a more flexible career for as my MS progresses. It is moderately physical, could be less if the need arrives and very mentally challenging, which I pray will not become a problem. I also love what I do and make an excellent income. So imo I'd be foolish to stop working for as long as I am able to. When the time comes that I am no longer safe or able to work I will at least have enough money saved so I won't have to worry about paying my bills if I continue to live frugally.

I will probably always be a little bitter that this has had to be my life's focus since I was diagnosed with this miserable disease at 40 years old.

[Cate Power]

I would work if I could

and I hope to start my own business once I deal with a physical problem caused by a 12-2011 fall. I went out on disability last March. I miss work a lot!

[AMac]

Teaching was my second career, and I did that for 13 years. We moved across the country for a better life, and the stress of the move took a toll I never expected. I had my diet and exercise in line, so I was down to the stress factor. We discussed it, and decided to me to take a year off to see if my health improved. The stress level is certainly down - there's always some level (less money=less travel and activities), but the major source is gone. I spend my days volunteering in my kids' classrooms at their school as well as at an animal shelter walking dogs as it fits into my schedule. As others have said, by the time you mix that with working out, grocery shopping, blogging, and trying to make as much of our food as possible, my days are pretty full and I still collapse in bed at night - although I am much happier. I'm waiting on orders for my next MRI, so I'm just hoping it shows improvement after these changes.