To Work or Not to Work-Quite the Question

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To Work or Not to Work-Quite the Question

Postby scdiva81 » Sat Jan 03, 2015 7:52 pm

I have been considering leaving the work force. I manage an education department in a stressful environment and quite frankly, it is taking its toll on me. I have been recently diagnosed and am trying not to jump the proverbial gun, however, I feel like my family doesn't get the best version of me because of the hardships of working with MS. When I leave work, I have nothing left to offer them and that is simply not fair to them.

So, before I lose myself in my own rabbit hole, my question is: for those of you who have left the work force, what were your experiences? Other than the obvious concerns like money and health insurance, what else should I consider? I like to look at a problem from all angles.
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Re: To Work or Not to Work-Quite the Question

Postby jimmylegs » Sat Jan 03, 2015 8:34 pm

hi and welcome :)

i'm not the best person to answer your specific question b/c i have pretty much dug out of my rabbit hole so far (except i have had to change *type* of job since i blew up my knee at work a couple years ago, but that is not ms-related..) still though, i'm curious what your treatment regimen has been to date? what day to day symptoms have you considering giving up your job? i'm assuming at least fatigue, but is there anything else in particular that runs you down over the course of the day? do you feel more capable on days off? re your dx, may i ask how recent is recent?

i'll stop with the questions now :) i'm sure someone will chime in who can address your question more specifically. lots of active participants here!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: To Work or Not to Work-Quite the Question

Postby ElliotB » Sat Jan 03, 2015 11:17 pm

I considered stopping working as well, but decided to continue to work at a much more relaxed pace and for much less time each day. I own my own business and do primarily office work. I stopped doing work for customers that I found stressful. I won't accept work from customers that can cause me any kind of stress. I scaled back everything and eliminated my employees so I do more now both physically and mentally than I did before, but again, at a much slower pace. I consider work and work environment 'physical therapy' for my brain. While I only work part time, I find working very, very helpful to my recovery. And working has definitely helped me. For example, I sit here typing on my computer now reasonably well. I used to type 60-70wpm, maybe more. A year or so ago, my typing was so bad that I had to use voice recognition software on my computer in order to use the computer because I was unable to type. As my condition improved and my ability to type came back, I chose not to use the voice recognition to insure I keep my brain sharp. And I still choose not to use it even though it would be easier in many ways to do so. I don't type at the same speed as I used to but even now, my speed and especially accuracy have improved greatly. Everything I do is to aid in my recovery. (For fun, I just did an online typing speed test to see my speed and it says I was typing at 56 wpm. I am pleasantly surprised and amazed!)

IMHO, you don't need to necessarily leave the workforce, but you do want to eliminate anything that causes you stress. Find another job. Find something you enjoy doing and do it (that is of course stress free)!


"what else should I consider?"

If you don't need the money, quit your job and volunteer at something you enjoy doing if you can't find employment at something that interests you. Eliminating stress and doing things you enjoy is paramount to your recovery.
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Re: To Work or Not to Work-Quite the Question

Postby scdiva81 » Mon Jan 05, 2015 6:00 pm

Thank you both for your insight.

My greatest symptoms are unrelenting pain, fatigue, and on some days, cognition and gait issues. I often forget what I am doing/saying and as an educator, that just doesn't jive.

I will be starting betaseron soon and will be going to a specialty ms clinic.

I fear that I need the money but I also feel like my family doesn't get the best version of me. I want them to remember an active, involved Mom....not the run down, ms overwhelmed version of me. Alas.......
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Re: To Work or Not to Work-Quite the Question

Postby Scott1 » Mon Jan 05, 2015 7:41 pm

Hi,

I've lived through this debate. Twenty years ago, I had a young family, a very demanding wife and not enough savings to protect myself. It was a necessity to keep working and initially it was a real challenge. The trick is managing fatigue. If you can bet that then you have a real chance. If you can't, then you have a difficult choice. The first time my employers had a policy that was akin to benign neglect so I was given time to get better and learn to adapt. I work for the same group but now it is ruled by overweight, politically correct types who just want to see the back of me after my recent episode. Now I am happy to go because I don't like their philosophy of life. It makes a big difference. Make sure you are happy being there anyway.
There are a number of ways to approach fatigue. You can see what I did here regimens-f22/topic6304.html and here regimens-f22/topic24019.html .

Sorry they're so long and I won't preach a protocol.
Ultimately, make sure you would be happy working there anyway. Don't stay if it's a burden and focus on eliminating fatigue. That will be the determining factor.

Regards
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Re: To Work or Not to Work-Quite the Question

Postby jimmylegs » Mon Jan 05, 2015 8:04 pm

ugh no fun, sc. have you been given any referrals to a dietitian or had any nutritional assessments done? you might be able to address some of the pain, fatigue, ataxia and cognition issues with some attention to essential vitamins and minerals know to be problematic for ms patients. even the drugs given to ms patients are known to affect nutrition status - for example betaseron improves vitamin E status. are you on any kind of diet or supplement regimen at present? let me know if you would like to investigate that kind of approach at all.
if so, you may find this fatigue topic an interesting bit of preliminary reading: general-discussion-f1/topic25661.html
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: To Work or Not to Work-Quite the Question

Postby ElliotB » Tue Jan 06, 2015 1:23 am

Many of the symptoms you currently have will likely at some point in the near future go into remission (assuming your have RRMS) and you will be able to function better. How much better no one knows. It is well known that an afternoon nap does wonders for most with MS. And through diet, exercise, supplements and lifestyle change, especially eliminating all stresses in your life, things can be a lot better for you in just about every way than they are now.
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Re: To Work or Not to Work-Quite the Question

Postby Youarethecure » Tue Jan 06, 2015 7:57 pm

I also look at work as a helpful part of my recovery periods and staying well. Granted, I am in a different boat than most because I am young and work as a chef/pizza man but i truly think it makes me feel better to be constantly active and moving. Physical stress and heat usually don't bother me so I am very lucky.

Stress and fatigue are the main things you need to manage if you want to keep working. I recently went from managing a restaurant (stressful) to just being a chef or pizza man, depending on the day, at a new place and it has been great. Not having to worry about all the other things feels so incredible. I can just enjoy my self and cook all day.

Now realistically, in the long run I should look into other professions and finishing my college degree....lol
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Re: To Work or Not to Work-Quite the Question

Postby scdiva81 » Thu Jan 08, 2015 1:45 am

Thank you, all, for the insight. MS definitely wasn't a part of the life plan, but I bet you already knew that ;).

I need to speak with my new neuro and determine his opinion...I fear that I may not be "lucky" and that I will not be in the RRMS crew or rather that my RRMS phase passed, mostly uneventfully, and now I'm in the big leagues.

Alas.

Again, thank you-and thank you for welcoming me into the fold.
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Re: To Work or Not to Work-Quite the Question

Postby ElliotB » Thu Jan 08, 2015 1:50 am

Regardless what stage you are in, there are actions you can take to help yourself. Ultimately your physical and mental health is in your own hands (to a degree).
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Re: To Work or Not to Work-Quite the Question

Postby DrGeoff » Thu Jan 08, 2015 5:13 am

FWIW: I stayed working after the onset (giving conference papers in Prague (Czech Republic), Bellevue WA, and Orlando. What made me stop was a severe relapse that had me in hospital for IV Steroids, while someone else was giving my paper in DC. Now I cannot even walk onto an aircraft.
Do what you can and want to do while you can do it. The day may come when you wish you had.
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