How did you decide to finally stop working?

[MsWobbles]

Yesterday I was just too spacey - getting things wrong in my job that I normally would have no trouble with.
Lately I have been feeling way more fatigued and weaker than usual, having to nap in the middle of my work day, and not able to do the amount of exercise I had usually been able to do. My boss noticed this early - gave me the rest of the day off.  

For all of you who have stopped working - how did you decide (or was it decided for you?).  Some days I'm in tears working because I'm so fatigued - but I need the insurance and income so I chug my energy drink and keep plugging along - actually I usually overcompensate, pushing myself harder so I usually am more productive than others in my department most of the time.  Then I crash - fall into bed.

If I can't think more clearly than I did yesterday, I feel like THEY are going to decide for me.

How was it for the rest of you who stopped working?  Any suggestions?

Thanks!

WAF

[stressed5157]

Hi Everyone,

I am currently in the process of working with my physician and my employer on being granted the ability to telecommute.  I feel there might be a struggle with my employer because while the do not believe in employees working from home we currently have 4 associates (with my same job title) working from home.  I already provided documentation from my treating physician that my long hours and long commute may be detrimental to my health.  I was given a packet of information to have my physician complete.  I do not want a long drawn out battle but I also do not want to lose my job.  Most importantly I do not want the stress of my work environment and the stress of the hour long commute each way to have a negative impact on my health.  I am trying my best to deal with my disease and raise 2 small children.  I am curious if anyone has advice on how they managed a similar situation.  Also if anyone thinks I need to involve an attorney to help me handle the corporate barriers and "strong arming."  Thanks for all the help and feedback :)

[Sonne925]

I started exhibiting symptoms of MS in my late 30's but wasn't diagnosed until age 46 after I had experienced one sided double vision.  I had just made a switch from a part time to a full time position a few months earlier before I saw the neurologist and received the news.  I poo poo'd the diagnosis and as my vision always returned to normal within a couple months I didn't entertain the recommendation to start DMT.  Huge mistake.  Two months later after a particularly stressful month at work I lost the feeling in both of my feet and had a lot of difficulty walking.  My employer was very supportive and cut back my hours at work and I had plans of going back to my old part time job within the next few months as I was finding working full time hours too demanding on me physically and mentally.  In the follow up with my neurologist, she decided that I should be off work entirely.  I would have happily gone to part time work and it was quite a blow to be taken out of the workforce entirely, but in hindsight, I really believe that stress is a bad thing when it comes to MS and can have a negative impact so I'm grateful that my neuromogist intervened and made the decision for me.  My MS is progressing, my hands are now affected, but am walking better thanks to the Fampyra.  My brain feels like it's stuffed with cotton wool and my attention and concentration is pathetic.  My husband calls my distractedness "Shiny Penny Syndrome".  I live in Canada, am foruntate that I belong to a union and so I still have all the benefits from that (medical, dental, extended health) and receive 70% of my predisability wages, so I don't have the financial stress in addition to all the other things that come along with MS.  It's not an easy decision to make, to leave the workforce, so much of who we are is tied up and defined by our work, not to mention the social network we end up missing.  

[MsWobbles]

I have just read all your responses and deeply appreciate your candor and insights.
One thing that makes it so hard for me to imagine not working is that I am supporting two of us:  My bipolar son may never be able to work outside the home and his meds and therapy are expensive.  Also I do enjoy my job working from home and know I would never have the energy to commute to work at a different job.  Actually, I don't even have the energy to really get the job done well at home anymore without energy drinks and naps  - like Rendean I am a high producer who naps during lunch instead of eating.  Like Mike, I have LTD benefits (mine are "portable" staying with me whether I am employed or not) so they could help me, but what about my son? I guess I really need to get information on how to get him covered by the state.

Quix, I just want to say that as much as I criticize the medical profession, I have only the utmost respect and admiration for you!!  Reading your heartfelt words here, you did the right thing - it was your colleague who failed that baby.  My son was in the NICU and he had a wonderful neonatologist - no complaints!  You are the kind of MD we all wish for!!  If only your MS could have taken out one of the losers in the medical profession rather than you - but then we wouldn't have you here on this site!  But I still wish you were practicing medicine because you sound like the kind of doctor our children need!!

WAF

[starryeyes1]

I started having my first symptoms 3 yrs ago while in Beauty School. I literally woke up one day and couldn't walk straight. I kept veering off to the left or walking into doorways. I tried to hide my problems from the clients who would come to the school for affordable hair services, but I know many noticed.

I managed to graduate and get my license, but never got to work for anyone due to the imbalance problems. I couldn't lean over because I would fall over. I couldn't even get in the door for an interview without looking totally drunk.

I haven't worked since 2007. I have applied for SS twice and have been denied. The third time I hired a lawyer and am hoping it goes thru.

I think its a personal decision on when its time to stop working but in my case, things were decided for me.
Good luck on your work situation.
Hugs
Kristi

[Sailorsong]

If it was a mixed bag for my quiting work. I was the department manager for computer design which needless to say required a lot of mental work. It was getting harder and harder for me to handle this so I opted to have my position changed to that of a software design engineer. I figured getting away from all of that high level math would get me by. But alas that was not the case as I was struggling to keep things straight in my head too.

Finally after talking with my PCP he suggested that it might be time for me to go on disability.  This was less than a year after my symptoms showed up, but what was the final straw was one day when I was so tired on the way home from work after only 1/2 day I had to pull over on the highway. The next day I had my PCP fill out the papers for me to go on disability. This was just 3 months after I changed to a software engineer and I knew if I kept this up I would end up killing myself or someone else driving.

I did try to go back to work about 2 years later but after just six weeks I had to again stop working as I was having the same problems I had before.

Then around 2000 I was feeling pretty good so I thought that maybe I could go back to work in some manor, though I didn't expect to be able to work in my old field. I went to a state Vocational rehab program and after testing me for 2 days ( 3 hours each day ) they said I was too bad off from them to train me to do anything.

Dennis

[Mike_Shuswap]

So far, my doctors (my GP and Neuro) orderred "no work". I didn't argue, I can't physicaly do my job now anyway.

Luckily I have a work funded insurance that pays LTD benifits (70%, taxable).

I very much hope to be able to return to work someday, I really like my job, but this is looking less and less likely.

My employers are permanently replacing me in the next couple of months, but they have told me they would make room for me if I was able to return in any capacity. I guess I'd need approval from my dr's and from WCB (now Worksafe BC).

I'm 54 years old and was hoping (planning) to retire at 60. I'm sure the inability to work would be much tougher on a younger person, but I miss the satisfaction of working. I really have....had an awesome job in an awesome location.

Hmmmm..depressing subject....but a good thread none the less

Mike

[alphateam34]

I was wondering the same thing.  I have not worked since March of this year and I am so use to working that it is depressing.  Every time I think I can return something happens.  Like today I got up from the bed and my leg gave away and fell on my knee, it is so annoying but I know that these are things that I have to deal with.  My memory is not what it use to be and I am tired all the time.  

[lovemy6monkeys]

I'm not working, I have not since I was pregnant with my oldest (He will be 13 in about a month). I have done a couple seasonal jobs over the years to make extra money for Christmas. I told my DH the other day that I wanted to find something part time (maybe 8 hours Saturday & Sunday, and 4 hours one night a week) to earn money for Christmas. He is putting his foot down and saying no. He wants me to concentrate on school. I am taking online classes for medical transcription. I can do that part-time from home and add more hours to my work day once the baby is in school full-time (in a few more years).

I was thinking DH was being unreasonable. I'm superwoman! I can do a part-time retail job, take care of the house and kids, and do my schoolwork!

Yeah, now I'm thinking he might be right. The stupid headache behind my left eye came back a few days ago. Tylenol was bringing it down to a bearable level. Then yesterday we got up super early to go on the Kidney Walk, which was held at our local zoo. We did the walk, and walked around the zoo with the kids. Afterwards we went to the local children's museum and played there for a few hours. By the time we left, my head hurt so badly I was nauseous. As soon as we got home I went to bed and slept for about 2 hours. I woke up, had a little bit of food (since I hadn't eaten anything all day) and went back to bed. Today I'm spending the day in bed again. I feel like I was hit by a truck, and it backed up and ran over my feet a few times. And the headache is still there, too.

I'm stressing over Christmas, and I hate that I'm physically not able to do anything to earn extra money right now. My DH is right, I need to concentrate on schoolwork. I hate this, though, and I'm not sure what to do.
~Jess

[supermum_ms]

I had just finished a 12month contract (special education) and was looking forward to going back to uni, both my kids were doing well, i was planning to study from home during the day and was really looking forward to doing something just for me.

My last contract was full on with 2, 5 year old Autistic boys in main stream, the year before had been hard enough with a boy with behavioural issues that made him dangerous to him self and others, god he was big for his age and i couldn't be distracted for a second or all hell broke loose. Still i loved what i did, loved each day and respected the responsability their parents gave me in keeping their baby safe and happy.  

Some days i didn't get out of the car park before i crashed, I was ready to stop working, i couldn't go back to the corporate world i'd left when my son was born, that was even more hours. I couldn't see my self doing nothing, and going back to uni was something i'd always planned on doing, it was time.

Then my brain went loopy la la and uni doesn't seem all that important anymore, i could still do it but it would take a heck of a lot longer and so much harder but i think i really wouldn't be able to give it up again, in a way not going back doesn't seem as hard as having to leave, i can still hold onto the maybe one day lol.

Cheers.......JJ

[tonyad]

   I too decided on my OWN...That it was time to leave my career when I was continuing to make extremely dangerous mistakes to my own well being as well as a couple other officers.

    After leaving the Medical field...I went into Law Enforcement and woked for the County then decided to leave and work for the Sate, at a State Prison as a Confinement Officer.  Working w/ those in Confinement  V/S working with those in General Population is quite different.  

      The Quad I worked on was for Death Row and the Worst of the Worst (as far as behavior goes) meaning they were usually in that part of lock because of severe behavior issues and Loved to Assault Staff.  So when I started to make several Cognitive mistakes, then when I went home at night to Re-Cap my shift or write a report, it really dawned on me ...how serious this could be!  Besides, I felt I was getting a bit to old to be physically fighting w/ those crazy Females...lol

     I have to admit though, I do miss my line of work and working there! And I really miss the MONEY as well as the Benefits ;)

Hope you come to a decision that You feel is best for You!
Take Care,
~Tonya

      

[rendean]

I believe the original question was "How did you decide to finally stop working?". In my case , it was decided for me.

I was the highest producer of work , the highest return per assignment and even received kudos from a a Federal Court judge on the quality of my work. But, financial concerns are always at the forefront in a small business. I worked for a small law firm and it seemed logical and the best choice for them to force me into disability. I worked for 8 attorneys and the other equal in the firm worked for 2. Yet, the internal memo stated I was not holding up my fair share.

At first I was angry!  But, as I struggle through the SSDI process with the help of the LTD company I can see the whole picture. I may not have control over everything but I have to admit, in the end, it was the right thing to do. My skills have deteriorated  and I know in my heart , whether I want to admit it or not, I am not at the same caliber I was a year ago.

Before I took disability I was taking naps in lieu of eating and working 12 hours to produce 8 hours of billable work. My family hardly ever saw me and when they did I was an angry, tired and exhausted version of my former self.

In my opinion, you WILL KNOW it is time to step down. Just as Quix knew it was time to step down, no matter how much it breaks your heart and tears at the core of your self-esteem, you will know when the time is right.

I am hoping , it never happens to you but if it does, you can survive. Many on this forum have faced this decision and are better for it. You return to the person you were , instead of the working maniac. You can give your body the rest it needs to function at it's best.

And yes, if you do have to step down, it hurts. It hurts deeply.I'm not not going lie but the new you will be better for it!

Wishing you the best,
Ren

[Quixotic1]

Before I left practice my life was nothing more than Rounding -> Office -> Nap -> Office -> Nap -> Rounding -> dinner and to sleep.  But, I left call when I realized one morning, after a wicked night on-call, that I couldn't muster the brain power to treat a premie in respiratory distress.  I handed the premie to a colleague and left practice shortly thereafter.

It took years of reliving that moment in horror 'til I realized that these things happen.  Any given doctor could have a medical emergency in the middle of taking care of a medical emergency.  The premie did not do well - though in the end was okay, I think.  The problem (and I knew it at the time) was that the doc I gave him to (my only choice) would not follow my directions to send the baby IMMEDIATELY to the NICU in Reno.  The next day (still at our small community hospital) the baby crashed and ended up on a ventilator for more than a week.  This would have been prevented had the neonatologists gotten him the first day.  

It took a long time to forgive myself, but my mind was not responding to what I needed to do.  I had no choice.  The failing - with regard to the premie - was my colleague's, not mine.  I told him in no uncertain terms what the baby needed.  Still, I knew that he would try to be a cowboy and keep the baby in our small town.

This was on top of realizing that I was not remembering things in the office like I needed to.

Quix, (remembering this makes me sad)

[Guitar_grrrl]

Wow, what a timely thread!  I've just had the week from hell, and my job is quite physically demanding.  I'm trying to recover, today.  

I DID have a rather serious talk with my DH about an hour ago, about this very subject.  I'd LOVE to find something that allows me to telecommute - maybe some data sorting for the cardiologists I work with...I dunno...

I may also look into SSDI.

[JemmAus]

I stopped working two years ago when my GP (primary dr?) declared me a moron and unfit...NO LOL...........actually I had been working in admin but my headaches were so severe staring at a computer all day, my boss declared it ridculous.

I changed jobs to cleaning houses. But then the balance issues started so THAT was  dismal failure as well.


The I did some "work from home", market research stuff. That I can manage, but the work is so intermittant it's not enough to survive on.

Thankfully I live in a "socilaist"/"Commie" country where we don't need a lawyer to apply for social security help!

WAF, I would highly recommend working from home, typing or whatever. Presuming one's hands are working of course.

At the MS society support group the other day one lady works from home typing her neuro's reports. He emails them through as voice.....umm...voice message thingos? (I dont know the term) and she transcribes them. Sounds perfect to me! I wouldn't miond doing that myself.

[MsWobbles]

Good to hear from you  - thanks for answering!  Yeah my performance is usually very good and I have an unusual job circumstance working at home, telecommuting, which allows me a break mid-work-day (at my request) so I can sleep/recharge then.  Also can work early when I have the most energy and don't have to expend any energy commuting.  Couldn't ask for a more comfortable and accommodating work environment (complete with the essential nearby frig).  I guess I could ask for more time off in the middle of my workday so I could nap longer.  But what worries me is that my spaciness yesterday occurred at the very start of my workday which is when I am usually at my best.  So even more sleep might not help - which is worrisome.  

You're right, Audrey, I am still in Limboland with no diagnosis (didn't I see you there the other day?) but I do have a muscle biopsy coming up this week and hope it will shed some light on things - leading to a diagnosis.  Under consideration, among other things, is mitochondrial disease such as inclusion body myositis, MS, ALS etc.  

I can sure empathize with you, Audrie, about having no real nest egg (or not much of one) and being in 50's or 60's with the threat of job loss hanging over you. That is exactly where I am too.  Maybe we'll have to find a way to create additional income in case of job loss - something that doesn't require lots of energy or a grinding schedule- like writing a hit song or book.  Hey, maybe I can be Prince Poppycock's agent!!  That guy is so talented it would be money in the bank without any effort!!!

Audrie, there is one name that comes to mind who should inspire those of us without enough to live on as we enter retirement:  Col. Sanders - He realized that he didn't have enough money to live on as a retired person, so, at an advanced age, he marketed his chicken just to get some extra money to live on - a real senior success story!  As a bit of trivia:  The very first KFC was in Salt Lake City (not Kentucky).  Who knew?

I guess if I did lose my job, I could always try for something else less stressful.  Like you, Mayperl, I do like being useful (just not when fatigued).  And since I don't know when I'll be overly fatigued, it would be hard to commit to a new job.

Thanks for your suggestions and well-wishes.  

WAF

[jean_619]

Thank you so much for bringing this topic up.  I've been grappling with the same issue myself, and I'd really like to hear what others have done.  The responses so far have been great to hear.

Jean

[Audrey_M]

What you are facing is probably one of my greatest fears; not being able to work and having no real nest egg in my mid 50's.

Looking through your posts and profile, it appears that you have no diagnosis, correct?

If you were diagnosed with MS or some recognized disability, you could be covered under the ADA (American Disabilities Act). This would provide for some accommodations in your job.

Does your doctor feel that he/she is any where close to a diagnosis? Maybe if you put these concerns on the table, that might help move things along?

Please do not try to overcompensate and wear yourself out even more. Just the fact that you are trying to overcompensate shows that you are a conscientious worker and I'd bet that your job performance is much better than you actually think it might be.

Do you have a positive work environment or is flex time available? I'm very fortunate to work for an organization where the corporate culture is one that creates an almost family like atmosphere and is very accommodating when it comes to health and family issues. I'm the Finance Director with a 45 minute commute to work, but I am able to telecommute on those days where I am unable to drive or other medically related issues arise. I have remote access to the work server and often times get more done here at home than I would in the office.

I don't know what type of work you do or your job's corporate culture, but if you are a valued employee and your position does not require you to physically be at the workplace, there may be creative solutions which can help you continue to work.

Can totally empathize with your concern about the decision being made for you, and that's why I tried to see if there are any possible ways to find more flexibility with work.

I hope you get more feedback from others, as this is a very important topic and concern to many.

Hope you use the weekend to rest, relax and rejuvenate!

Audrey

[mayperl]

Can't say I've decided to quit working, dont think I can ever do that... it's just not in my personality.  I'm a busy person by nature and need things to do whether it be writing, cooking, landscaping... whatever to keep me and my mind moving.

Of course, now I take more breaks both, mentally and physically, than I others my age who aren't effected by the same circumstance.

I'm relieved to say that I've made the decision to quit a high stressed, over demanding, project management job next week for a much more even paced management position at a book store.  Trading in 55 hr/week for 40 is a big difference and a 40 min commute for a a 20.

I say, do what feels right for your situation.  I want the opportunity to potentially move my position down to a lowly bookseller, roam the book isles, doing what I love; interacting with people and reading new books!

I want to always be working :)

-Mayperl

[MsWobbles]

Dear Paula,

Thanks for the fast response.  I'm right there with you in the fatigue department!  I keep thinking it can't get any worse than it is - but then somehow it does worsen!!

Did you have to use a social security attorney?  Good luck to you!!

WAF

[figuerpa]

WAF,

I quit working per the request of my neuro, before that my boss had noticed that I was loopy and forgetting things all the time and being a manager, that was unacceptable.

It has been a long hard road with Social Security, and I am still in the process. I took a major financial blow when I stopped working it was hard and still is but I make the best of it, good thing is that I was not soley dependent on my income alone.

Talk to your neuro and see what he/she suggests, I am going through worse fatigue than I have ever felt before and am waiting for a return call from my neuro as I type this.

Good luck,
Paula