I just want to put this out there, when is work too much????? I was diagnaosed with MS 3 years ago and I have been back to work for over 2 years now (full time). I currently work 4 days at 10.5 hours and have 3 days off.
Lately I have been finding that 3 days is not enough. I am having trouble keeping up with my house work as well as I have a family that I need to take care of as well (a young son). All I want to do on my days off are sleep, I feel like I have no quality of life, I go to work and come home and sleep.
I was just advised that my work schedule is changing to 5 days a week with the potential of working late nights (4:30PM-01:00am). This worries me big time as I have medication I need to take and anyone on Rebif knows that you should inject just before bed so you can sleep off the symptoms. This would pose a big problem if I have to work that shift as well as I would not see my family, which my biggest support system.
I do not want to stop working however I need to be able to tell myself that I can not do everytihng (I am a little stubborn). I have made an appointment with my doctor to see if I can get modified hours. I just feel like I am being worked against instead of being worked with. My work knows my situation and I have been with the company for almost 15 years so it is kind of disheartening that that kind of schedule would even be presented to me. We have fully healthy people here at work who find the closing shifts too much and here is someone with a cronic illness who is beening given this shift.
I feel like I am being put between a rock and a hard place. Is my work trying to make things difficult in order for me to leave?
I am wondering if anyone has a similar situtation? What did you do? Any suggestions or how to approach this topic with my doctor?
My work has put me on a sick program as I have called in sick too many times (either a cold but the majority have been little MS symptoms where the doctor is writting me off for the week). How does one go on when you are always stressing about work and being sick?
Hoping for any suggestions or insight, I hate to use my illness as an excuse but I am starting to realize that life is too short and sleeping and working all the time is not the life for me.
thanx for reading
First of all, you are not alone in this! I had my first major relapse in September 2014 (didn't know it was MS) and was Dx'd in November 2015. I feel like I've been barely able to keep my life moving for the last 18 months since this thing invaded my life.
Here are some key questions that I have been working through:
1. Finances: can I afford to be out of work & if so, for how long?
2. Insurance: how will I get my meds, doc appointments, future relapses covered if I am not working?
3. SSDI: Do I think I may qualify for SSDI (this is an excellent question to discuss with your neurologist)? This process can take awhile, even if the answer is "yes", so be prepared for that.
4. Can I work part-time with my current employer? How part-time can I go & still keep my benefits?
5. Would a different work environment make a difference for me? If so, what types of jobs am I qualified for?
6. Is there a different role at the same company that would be a better fit at this time?
Does your employer know you have MS? If not, is it time to disclose to them and/or do you think they would try to push you out? Sadly, from what I have read here, that happens more often than not :(.
Working with MS and caring for a family is a lot of stress. I have 2 kids at home, and it was a challenge BEFORE all of this came on! The process isn't easy, but I really encourage you to do the leg work and plan for your next move before making any changes at your job.
My last suggestion is to create a timeline for yourself. Have a date in the future by which you plan to make a firm decision. That decision may be to wait another 6 months before re-evaluating or it may be to quit your job. Either way, having a firm timeline in place will help you to move through the decisions in a timely manner so you are moving towards something instead of just wondering day after day what to do.
I hope this was helpful. Wishing you all the best.
Thank you for the advice. I guess I am trying to take each day by day and this is not helping my situation.
You have some very good points and ideas, food for thought for sure.
It's nice to know that I am not the only one.
This is Steve with the National MS Society. I wanted to share the following link with you. It will take you to one of our publications which addresses this issue. I hope it is helpful.
If you would like to discuss your situation with one of our MS Navigators, please do not hesitate to contact our Information Center at 1-800-344-4867.
Thank you Steve, I will definitely reach out to them!
@Abrown79 I was dxed in 2011 a little while later when I was done with work I would fall out of my car. I talked to my dr about it he put me through a test it was all day doing straining activity. Close to the end my body was so tired he stopped the test and told me I shouldn't be working. I would ask your DR about it he can also give you hr restraints to help out. All we can do is our best. I really hope this helps cause I know exactly how you feel it's scary.
I can completely relate to your situation. I was diagnosed 2001 at 30 yrs old. I had been at my job since 94' so when the synptoms fatigue, memory, cognition started to effect my performance they worked with me all they could. My manager suggested I get my dr to sign FMLA intermittently papers and they just kept down sizing my job to what I could still do. I wasn't having much qaulity of life though. I was to exhausted to do more then come home help with homework and cook.
Once the company restructued under new managment I accepted a severance pkg knowing full time work at another co. Wasn't something I could do. Ssdi did come up from ny doctor.
Sorry to hear your situation. I have MS and have been fighting to keep working as well. I have reduced my hours to 6.5 hours a day 5 days a week to keep my full-time medical benefits. My employer gave me a hard time and switched my hours many times before I got the hours i really wanted. As part of reasonable accomodations you have to try to work with your employer to come to agreed upon hours. Like you, (different but similar) I had co-workers ask to reduce hours for non-health related reasons and they were given the hours without any hassle. So be prepared to be frustrated. Cutting hours is hard especially when our medical expenses go up but I still feel i can make more working than on disability and have decent health insurance. (I only pay $50.per MRI)
I would request the day schedule as a reasonable accomodation. If they are unwilling, then as your doctor for a letter stating that you require this schedule and why. I had to do that.
I also struggle at home and no longer have a life outside of work. All of my energy is saved so i can work my reduced schedule. My boyfiend cooks and cleans up and does more of the cleaning or physical work around the house. On good days I do more. But its a choice you have to make that is best for you.