Still Working??

[alwaysbelieve]

I'm relatively newly diagnosed/labeled and I've been getting a lot of advice from others. They are sayings that I should not work because it adds additional stress, which has obvious negative impact on health.

I was wondering...is is common to quit work once diagnosed? How many people out there are still working?

Any feedback would be greatly appreciated.

[tinydancer]

Hi to all,

I worked for 3 years after dx, but found it was getting harder and harder for me to stand. So befor I quit working I made sure I had all ducks in a row. Insurance, points worked ect.. then I started the long paper trail that the ssdi will send you once you decide to take that plunge.
Make sure your doc is in your corner. It just took me 90 days and I was approved. I do miss my old life, but now I have a new life to look forward too!
I'm learning to roll with the punches with this. What else can you do right.
So if not working helps then so be it. Its just a part of it with some, then some are still going strong. MS is so different for everyone. You do what you got to do to help yourself. Live strong stay strong.

take care all,
tinydancer

[Jules A]

Well if you find that your health is deteriorating and you can afford to stop working it might be a wise choice.

I've been blessed so far with decent health so I'm going to work, like a fiend, for as long as I can...because I can. Since diagnosis I've been so worried about my financial future that I went back to school while working full time to get a degree in a field with more flexibility for if/when I do have physical limitations. I'm going to make hay while the sun is shining and I think that is good advice for everyone, MS or not.

Work is stressful but not so bad if you love it and I would be freaking out if I didn't work especially while I was physically and mentally able so thats where I am.

Trust your gut and you will know what is best for you. Jules

[MDM]

Well, I have had MS for a few years now, and I am still working.

I work as a front-line person in a busy hospital, and so have a fairly physical job. When I was diagnosed, I began to make plans to be able to keep working when and if the MS progressed. Since my diagnosis, I have noticed that the fatigue can be a big challenge, and the physical effort required for work does have a big impact. So, I am taking courses, and positioning myself to transition to sedentary work while still maintaining my professional credentials.

I am very lucky as I have an extremely supportive director, and she has really facilitated this work transition for me. I did disclose to her my condition after trying my best for a few years to manage while keeping the MS secret. It was a big relief when I told her, and I have had lots of encouragement and support from her and the organization. If anything, my career is advancing in a new direction, and I am quite pleased as to how things have turned out.

Bottom line is... try to make career plans with as much flexibility as possible. Explore new options rather than give up on the whole idea of working. For many people, work can be a big source of self-esteem and fulfillment, not to mention income. Given that MS can be /is a progressive disease, prepare yourself emotionally and financially for the day when working no longer helps you maintain a sense of well-being. The key is pursue whatever gives you the greatest sense of well-being, and realize that this may change over time, particularly as you age and the MS takes its course.

As I tell my kids, plan for the worst, but hope for the best.

Good luck to you.

MDM

[PattiLee]

I think that this is a very personal decision.

When I was Dxed 6 years ago, or so, the research showed that stress didn't influence MS.

Well duh. Why didn't they ask us?

Now the the skinny is that it does, of course. I suspect that stress effects MS like everything else-- yes for some, no for others. You have to figure it out for yourself.

Working for some people is their great stresser. I work in an alternative school, almost the most stressful teaching position you can have;however, not eating, or not being able to play would be a lot more stressful to me. :D

You have to figure out what your reaction to work is. Do you hate to go to work? Would it make you happy to not go in every day? Does hanging out at home sound like a disaster? Do you like going in and earning a paycheck?

I think that we can work until we can't, unless we decide that we just don't want to. I'll be sad if the time comes that I can't. It's not that I love crawling out of bed every day-- but I have a really expensive gardening habit.

Nothing is more perfect and peaceful than sitting out in a beautiful garden listening to the birds and watching the flowers bloom. Until I get over wanting that next new hybrid, I'll be working to plant it in my garden.

I have MS, but I'll be darned if it has me, or that it will prevent me from planting my new roses, or from going in to see my students, untill I decide.

Hubby is making me a new trellis this spring. It has a garden swing in the center. I can't wait!!

Blessings on your decision!!
PattiLee

[Erin]

I'm not working right now, but I havent worked a real job since 2002. And that was long before I got diagnosed or even knew I was sick. (diagnosed about a month ago)

The reason why I havent worked was because I was helping my dad with my mother. (mom had cataracts and needed knee replacements) Then when I decided to go get a real paying job, no one would hire me. I'm relatively unskilled. I was taking classes for awhile before my mom's knees and eyes started getting really bad. (they're all better now) but I quit taking my college courses about the time my mom had her first knee replacement. (was taking desktop publishing and medical transcription classes)

I'm about to start going back to school. (going up to the college tomorrow or the next day to register) I'm going to go back to doing the medical transcription courses. Several years back, I had decided to go to school to become a librarian, but was on the waiting list for the classes. Now that I know I have MS, I've decided to do the medical transcriptionist. There's always going to be sick people, so there's probably going to be a pretty good demand for transcriptionists.

I actually emailed my old transcription teacher at about 2am this morning to find out what she classes she thinks I should take. I'm going to retake one of the medical terminology courses as a refresher, along with the coding and billing... then this summer I'll start the transcription classes.

My old transcription teacher said that she knows a LOT of transcriptionists who have medical problems like MS. She said that depending on where I'd get a job doing transcription, you can pretty much set your schedule, and it's not a physically demanding job.

I'm actually kind of excited. I'm hoping to get a good enough paying job that I can move to the town (50miles away) my boyfriend lives in... I'm getting tired of the long distance relationship. I want to move out of my parents house while I still can.

[Ivy2]

I worked for 18 yrs after DX. I don't have a mild form of MS either. I had a secretarial job and a scooter at work. I did it as long as my hands would cooperate and reached the age I could receive a decent pension. I liked going to work. It helped me I think.

[lady_express_44]

I worked 14 yrs after finding out about MS. I liked denial. :p

I had only finished my schooling by a few years when I found out I had it, and I was really disappointed when they told me that I should avoid high-stress situations. I liked stress. :p

I down-graded my career aspirations, refused overtime, paced myself, took care of my health . . . and carried on. I reached a point (at 12yrs) where I had to start working from home, but even then I didn't give up. I only stopped working when the MS became a full time job.

Good luck in your decision.

Cherie

[Weeble Wooble]

I was diagnosed In Oct 2004, I stopped work at this time. I have other health Issues that I'm dealing with. Sometimes It's hard to tell If the MS Is the problem or the Uranium that I was exposed to while In Iraq.

Besides dealing with MS and Uranium, my wife decided that she wanted a man 20 years older than her. She's lost her mind. lol But that's her lose. But the stress from all of this has been awful.

I do have days that I can work around the house a lot, but so far this year has been the pits.

James

[Vikee1]

I worked after I was Dx (Diagnosed) for several years. I recall asking my Doctor some years later if I should stop working cause it was so very tiring. I was a Teacher and that's a stressful job?

He told me it was my decision and if I stopped working I had a chance of feeling better...he couln't say for sure.

I worked till I could afford to leave and couldn't do much else beside Teach. It was the right decision for me. I became disabled but the stress and pressure and "half life" were gone.

Take time to think about your situation. The answer will come when you are ready!

Vikee

[Sandshoe]

Hey call me silly, but I was a stay at home mum (i.e. worked full time) when dx but now the kids are at school I have gone back to work part time (30hrs per week) in a very stressful job! But it is what I spent 10 yrs studying for before the kids came along, then I was unable to work in the area (Child Protection, Social work - I have a psych degree).

I would have become old and cranky if I didn't do what I wanted to do in this life, so here I am, really tired, but getting as much out of life as I can. I am the type of person who will not lay down and die at a dx but will soldier on. In fact, the other day I saw an extremely well dressed lady in a wheel chair and my immediate thought was if I do ever get to that stage I intend to be as fantastic as her, no matter what!!!! I guess we will see, I figure, it won't actually kill me to solider on!

[bluesky63]

There is no advice that is right for everyone. The range of individual experience with MS covers a wide spectrum. Some people are extremely affected, and some people are affected hardly at all.

I think it makes no sense at all to tell someone to quit work once they are diagnosed. What if the stress of not working is greater than the stress of working? It all depends on a person's individual financial situation, support system, symptoms, family picture, education, and so on.

Good luck getting info and making decisions. Do you have a local MS Society where you can find a live, in-person support group?

[bfine]

I was dx'd in 2003 & stopped teaching this school year. This is an issue that I think is different for each person. MS as we all know effects each person differently. I'd still be teaching right now if I could but I found each day at the end to be a huge challenge to just get through & then there was the next day!

So as some have said I made sure that it was going to work out for us financially, & then I applied for State Teachers Disability/Retirement. My paperwork was processed & I was accepted in 3 months.

It has been 6 months now that I have been retired & I still miss my students tremendously! Old habits of 28 years are hard to break. Do you know that today we had fog & I still checked the school closings to see if my school was delayed. I was a computer teacher. Every day I still go on line to see what my students have done differently with the school web page.

BUT, I must confess I am glad that I have done this. My health is 110% better this year then in the past years. I haven't had to have any selumedrol-(sp?) treatments or even steroids. Last school year I practically lived on them.

Don't stress out about whether you should or shouldn't because you have been told that it is better for you. Just do what your body tells you to do. You will know when the time is right!

Best of luck to you and all!:)
Nancy

[TheSleeper]

I had to stop after about 6 months because my doctor put me on restrictions my employer would not allow. I was lucky though I had enough time on the job to retire.

It was my plan to find another job once the cause of the mystery illness was found or I got better. Never got better, progressively worse, but they did find the reason, so that`s a plus!

Some things to consider are your age, how long you have been working, how much you earned, it will affect your Social Security Disability income if you are determined to be disabled.

[smhiles]

Of course, I'd rather work and be healthy than to not be able to work at all because of health issues. I am sure anyone would. If I had the choice to have MS or even multiple diseases, I really doubt I would want it. But, unfortunately no one gave me that choice to make. As we all have our limitations, some have been dx'd, but not enough issues to stop working, and that's great! Then there are some who have MS or other diseases that have hit them hard, and the need to concentrate on living as well and healthy as possible should be made to do just that. I hope that at whatever point you are, you are happy with how you are living to the best of your ability. At this time, in my situation I know what I can and can't do, so I have to make the decision to live my life to the best of my ability to maintain and strengthen my health for myself and my family.
:)Best to all of you and may you all be at peace in your decisions.

Smhiles:)

[bluesky63]

In case you ever need it -- better to know it first than to regret it afterward: :-)

http://multiplesclerosissucks.com/insurance.html

[vms]

I worked until I could no longer do my job--I'm in a wheelchair now.

[servo3000]

i still work, 10 years after DX.

when i was DX'ed, i had a nice desk job...somewhat stressful but not too physical. then i got laid off and went back to school. for cooking. i always loved to cook and i figured, "hey people gotta EAT, right?"...i was still in that "i can do ANYTHING" stage and feeling pretty good.

now my job is HELL and STRESS on wheels. hubby's job isnt much better and i wish i could quit every day. its killing me. i have no enthusiasm for my job or for ANYTHING anymore. my MS is progressing and there are days i wish it would progress FASTER so i could get SSDI.

so working, for me anyways, is NOT all its cracked up to be.

you need to look at your situation...REALLY look at it and decide if you would be better off physically, mentally and emotionally. what good is the money if youre dead?

sometimes, the peace of mind that could come from not working is more valuable than any paycheck...

[renee]

I have been working part time (wheelchair bound and not at home) the last six years and I receive disability.

Work is one of the best things I can do for my mental health as well as pocketbook.

[Lyn]

When I was first Dx'd I had not long lost my job as a check out chick (I got the sack because all of a sudden I had short term memory loss, mobility problems and major fatigue issues...wonder why??)

When I got the Dx, I was so scared, I decided that there was no way I was going to get 'put out to pasture' yet. So I decided to study. Now I work there as a teacher for computer and administration courses. Go figure, I never dreamed I would have MS and then get my degree.

The work suits me well, it isn't so physical and I have great workmates who all know my story. Just have to wait and see how far this will take me. Hopefully a long way.

[stillstANNding]

I worked F/T for 25 years after my first hospitalization. The one thing I would do differently is get a scooter/chair to use at work. I walked miles on covered concrete corridors.

I went on disability after a major exacerbation that didn't improve after 3 months. I couldn't sit up even 3 hours. I'm up for 12 now.

This decision is different for everyone. I don't think a dx of MS, itself, is an automatic reason to stop working.

Regards,
ANN
Individual results may vary

[Jules A]

I really liked reading the stories from people that have been able to continue working. I find it inspiring because like someone else said, I also need to work for my mental health and my pocket book! Keep plugging along. Jules :)

[K969]

It is wonderful to hear stories of people who are still working but like some-one else also said. It is a personal thing as well. We all know that MS affects people differently so therefore what prevents/allows one to continue working may not be the same for the next.

As for me. ..... Well I havnt been able to work since 1996. and I wasnt dx until 1999. It was my doctor and specialist's that told me back in early 96 that i would never hold another job. I had other health issues before MS was dx. It took me 6 months to come to grips with what they were saying and I refused to give up work., My boss was brilliant and was reducing my workload and hours and I really couldnt have asked for a better boss at that time.

After being sent home numerous times and also days where i rung in because I couldnt make it there I knew the time had come. it was VERY hard indeed.
We had to sell our house because we couldnt afford the payments of the one wage. That was tough. Blamed myself of course.

As the years progressed my husband too had to give up work due to my health. he is now my Carer. It took some adjusting and of course money is not the best now we are on Disability and Carer's pension and no home to call our home but we do manage and I can rest when needed without worrying about the dinner being cooked or the child getting picked up from school because my hubby is here. Would I change it? Yes of course, i think alot of us given half the chance but this is the way things are and you just have to make the most of it. At times it is VERY hard but I am thankful that I have a wonderful devoted caring hubby around to ease things for me.

Love to all
Tracey

[debbiemoller]

Once I was diagnosed, I worked for almost 3 years. Then my co workers-supervisor mainly - became so hostile I had more problems than the job was worth. Thankfully, my husband had a good job at the time. So money was not a real issue. I had 2 exacerbations while I was working, but have had none since I quit work.
Debbie:)

[alwaysbelieve]

Thank you all for your response. This forum is so encouraging and I actually feel the love and support from each one of you. Thank you.

I'm still able to walk (even though my legs feel "funny"). I do have some fatigue, cognitive issues, tingles and pain. They are all manageable, however. I've been off work for almost 3 months. I will be re-evaluated by the neurologist coming up here on March 1st.

Right now I'm covered by my jobs disability policy that will pay 50% of my pay until I'm 65 (I'm 42). I'm afraid if I return to work -- I will be fired or I will not be able to handle the stress. I work at one of the big 3 automotive companys and as you all know they are shedding their workforce. As a matter of fact, I did receive a buyout package, but did not take it because I'm a salaried employee and it really did not offer much. It's almost as if I should stay off work to ensure that I will receive 50% of my pay...

Well, thank you all for listening and responding.

alwaysbelieve

[paj]

I think you just pointed out why this has to be an individual decision.

The decision depends on YOUR ms, your job (ie what you do), your employee (and how they treat you) your benefits, and your support network.

That being said, I was dxed almost 5 yrs ago and still work fulltime. That will probably change shortly (I'm looking to move to 80%) and my MS is only a piece of that.

There is someone else at work who has been dxed with MS for over 20 yrs and she still works full time with minimum impact (her words) and we had another employee who worked until retirement and as long as I knew her she was in a scooter ( I never knew why) .

We are all different....take your time, explore your options and my personal advice, don't make knee jerk decisions....take your time.... (said the ole wise one :))

Good Luck to you.

paj

['Lissa+]

I am almost seven years past a diagnosis of "probable MS" and I still work fulltime. My neuro exam. is normal, so I don't have any physical disability. For me personally, work is usually a stress reliever. I like to work, I need to work. My brain needs something to do. Since I have a desk job, I think it is easier for me than being at home and running after two children.

Like so many have already said, this is a very personal decision based on your preferences and your current state of health. I plan to work as long as I possibly can. Make hay when the sun shines, as someone else here said. Good luck in your decision.

[petpuppy]

I am still working full-time but seriously considering filing for disability. I am sick 90% of the year and my biggest complaint now are tremors making it hard to write and type. My PCP told me a while ago I should file. Now I just need to ask my new neurologist if he'll support my decision. Could be two weeks from now or a year.