Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone,
I have a full-time job, which is a desk job. I have fatigue and weakness most days, starting in the afternoon. I'm am getting plenty of sleep at night and my job is not overly stressful.
I'm taking 60 mg. of Mestinon five times a day, Prednisone at 30 mg every other day, and Cellcept in the morning and at bedtime.
I have notified my supervisor that I was diagnosed with MG six months ago and provided some background information. My supervisor seemed very understanding if I need to go home early occassionally. (So far I have gone home early maybe two or three times since my diagnosis).
For those of us able to work a full-time job, what tips can you offer to me to cope with working and MG?
Thanks.
Sully
I have a full-time job, which is a desk job. I have fatigue and weakness most days, starting in the afternoon. I'm am getting plenty of sleep at night and my job is not overly stressful.
I'm taking 60 mg. of Mestinon five times a day, Prednisone at 30 mg every other day, and Cellcept in the morning and at bedtime.
I have notified my supervisor that I was diagnosed with MG six months ago and provided some background information. My supervisor seemed very understanding if I need to go home early occassionally. (So far I have gone home early maybe two or three times since my diagnosis).
For those of us able to work a full-time job, what tips can you offer to me to cope with working and MG?
Thanks.
Sully
I work full time and found I have to take my breaks which I use to not do. I also have to take lunch where I use to work thru. If if I am very tired my breaks are me laying my head on my desk for the break. It does help.
Hopefully others will chime in.
Hugs
Annette
I have six children, two girls and four boys.
My girls are grown and have moved out, but my boys are home with me. They are 13, 5, 4 and 3. Two of them have autism and one is actively potty training... there are no dull moments here :)
The best advice I could give anyone who is able to work would be to pace yourself and don't spend too much time doing one thing.
This is true even when on the computer, wipe outs happen when one activity is done for too long.
The dishes, then to some laundry folding, some putting away, some lunch making, some computer time (DS ;) ), some bathroom chores, get a kid down from whatever they are climbing on, change a butt... etc
Go slow and treat it like a marathon, not a sprint. More like a multi-legged marathon though... with a lot of variety. Be really easy on yourself and focus on the things you CAN do instead of the things you can't do. I had a hard time with "I used to be able to..." Now I just busy myself with the things that I am still able to do and enjoy my kids as much as possible (I am ready for school to start again!) There is not much time left to worry about the things that go undone.
You are very blessed that you have an understanding supervisor! I am so glad you are able to continue working there!
Love, Becca
Luckily I work part-time but I work 11-12hr days. Afternoons are the worst. I have really started loading up on coffee and find coffee ridden days are the easiest. I do a lot of talking during the day but make sure that I can take breaks...in fact I try loading my personal contact into my mornings and even if I am swamped and behind...I know the worst part of my day will be a little more restful. Talking towards the end of the day seems to be challenging,so I never schedule meetings then. I do also take 60mg mestinon every 2hrs some afternoons. I also got a chair from office max that has a high back so I can rest my neck back. I lowered my keyboard so I don't have to reach. I put my monitors exactly at eye level and directly in front of me so I don't have to turn my head a lot. If I go to lectures or meetings, I always now sit where I don't have to use extra muscles to turn to see. I try not to cross my legs (that one's a killer) I took 2 small lamps to my office and use a 60watt bulb and turn off the bright flourescent lights so my eye muscles don't have to work as hard. I work on a city campus and occasionally take a cab to walk one block. (but a few months ago I couldn't walk the block). And most importantly, just like Annette said, I now take a few 5min breaks which I never had done.
See what you can do to help...but you can also get an occupational therapy consult referral to see in your work situation might be helpful.
Best of luck!
Nicole
I recently worked wuth my employer and Occupational Health department to get a desk chair that has a headrest. This has been a huge help to me, since working on a computer all day made for a long day of holding up the weight of my head. (My generalized mg had gotten pretty bad )
Other changes were using a headset with my phone, and changing the font size to larger on my computer.
Bless your heart Becca. I cannot imagine how you juggle all you do let alone carry the weight of MG.
Take care.
Larissa
Sully
5 yrs ago, when my MG - hit me hard?
For me - work came to a screeching halt.
I am now on SS Disability.
But that worked out okay, as I was nearing retirement age, anyway.
- Ross
I work 4, 10-12 hour days a week and at noon I hit the starbucks green coffee refresher can hard. It works to get me through the afternoon.
Much like Becca said. After Ive doing something that requires me to talk a lot, Im short of breathe and raspy, so I do paper work a while and dont talk.
I get up from my desk and walk arround to do my faxes and other things, then sit and do some more calls and so on. This helps alot, to switch tasks every 30 min or so.
I also nap on my lunch break:) I set my phome alarm and nod off 10-20 mins before my cafiene intake and eat a light, protien filled lunch.
Some days are better than others. You have my understanding of how hard it can be.
Becca is amazing to do what she does! I agree!!
Jeannie
I used to work full time in home health physical therapy. Now I work about 25% time. Thankfully I can adjust the work load myself. I no longer take patients who require lifting. I don't see patients who keep their houses too hot. Even here with the Texas heat there are people without A/C. I use my cooling vest as needed. I drive a lot and use the headrest in my car.
Nicole, I realized early on that if I sat in a group of people having a chat, my neck and eyes would fatigue from having to turn my head to look at others. I try to avoid those situations or position myself so I don't have to turn my head much. Strange how such a little thing like talking in a group or looking at a monitor could be a problem.
Sully, I hope you can adjust things at work and make it easier on yourself. Take those breaks.
Cathi
Just wanted to add the MG is covered under the American's With Disability Act (just celebrated 22 years last week!). This gives you a ton of rights as a "disabled person."
A few months ago someone commented that they lost their job because their employer found they had MG, and used the excuse that they were using their office computer to access the DailyStrength MG support group. An employment lawyer would love to get that case --or so I have been told by a person with HR law I spoke to about this--because the ADA provides such exceptional protection.
Of course, for those without a Dx, the situation is far more complex, and I have no idea what I am talking about here. What rights do people with the symptoms of a chronic disease, but without a Dx, have under the ADA?
Anyway [long exhale] I thought it was important to emphasize that we have lots of rights in the US regarding employment law, and that fact should always be a comfort to us during our 3 a.m. worryings...
~Joe