Working with Myositis

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Permalink Reply by Natalie Bauman on February 2, 2012 at 1:30pm

My Neurologist has given me a new pill called Nuvigil to help with the fatigue, it is working for me.

 

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Permalink Reply by Meleah on February 4, 2012 at 1:17am

Great!  Thanks for the tip I will talk to mine about it!

Natalie Bauman said:

My Neurologist has given me a new pill called Nuvigil to help with the fatigue, it is working for me.

 

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Permalink Reply by Lorelei Cohen on March 8, 2012 at 10:58am

I was diagnosed 27 years ago. For many years I tried to find a part time position that I could hold but I think the longest I was able to stay at any position was 2 1/2 years and then I would be so sick that I would have to spend months recouperating on sick leave. I tried many different types of jobs from call center to night desk clerk but always wound up sick and it eventually got too dangerous for me to continue. I now work from home writing online.

Some key notes on continuing to work:

1) Try to avoid exposure to fluorescent tube lighting and the new CFL bulbs as you may develop, or now have a sensitivity to, the uv rays they send out.

2) If your office work area has a sick room try to lay down for a 20 minute total rest period during your lunch break. This will help give you the stamina to complete your day.

3) Try to avoid repetitive behavior including sitting or standing for extended periods of time. If you are at a desk job try to get up and move around a bit at different points during your shift.

Best of wishes for your success.

Tips for living with Myositis

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Permalink Reply by Meleah on March 8, 2012 at 1:56pm

Thanks Lorelei!

Thank you for taking the time to be so thoughtful in your response.  The 30 minute break at lunch is a great idea!  I am leaning more towards being able to work from home.  I am thinking this may be the best bet for me in the future.  

Meleah

Lorelei Cohen said:

I was diagnosed 27 years ago. For many years I tried to find a part time position that I could hold but I think the longest I was able to stay at any position was 2 1/2 years and then I would be so sick that I would have to spend months recouperating on sick leave. I tried many different types of jobs from call center to night desk clerk but always wound up sick and it eventually got too dangerous for me to continue. I now work from home writing online.

Some key notes on continuing to work:

1) Try to avoid exposure to fluorescent tube lighting and the new CFL bulbs as you may develop, or now have a sensitivity to, the uv rays they send out.

2) If your office work area has a sick room try to lay down for a 20 minute total rest period during your lunch break. This will help give you the stamina to complete your day.

3) Try to avoid repetitive behavior including sitting or standing for extended periods of time. If you are at a desk job try to get up and move around a bit at different points during your shift.

Best of wishes for your success.

Tips for living with Myositis

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Permalink Reply by David Andrews on March 29, 2012 at 1:46pm

I have a Dental lab,and have continued to work. I have several things that I have done to keep me going. I will share them with anyone who wants to call me and talk (takes to long to type !)   228 374 1936

 

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Permalink Reply by Meleah on March 29, 2012 at 2:23pm

Great David thanks for the offer of support.  I will give you a call.

David Andrews said:

I have a Dental lab,and have continued to work. I have several things that I have done to keep me going. I will share them with anyone who wants to call me and talk (takes to long to type !)   228 374 1936

 

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