I am really struggling with a relapse of my MG. I've been in the hospital twice since April and had several IVIG treatments, etc. I have missed soooo much time from work and my employer is losing patience with my disease. Our company is too small to qualify for FMLA. I am reluctant to go on disability because I keep hoping that I will go into remission soon. In the meantime, I use up all my strength at my job and then collapse at the end of the day. I spend my weekends resting so that I can go back to work on Monday. I would REALLY appreciate your feedback about how you all handle your disease and working. Are most of you on disability? Do you work part-time? I live alone so I don't have any help from a spouse. If you are on disability did it take a long time to get it? I'm really scared of letting go of my job, insurance and benefits but I'm exhausted! Thanks.

Hi Leaning!

I work about 6.5 hours per day 5 days a week. When I get home I pretty much immediately get off my feet. If I don't I can't make it the next day. Luckily I am a partner in my firm so I can pick my hours. I am only required to work a minimum amount of hours per year. I also can work from home connecting into my office. Is that an option for you? Maybe you can work out something with your employer. I find that if I push it for a 8 hour day, I pay for it on the next day and wind up missing more work...so if I stagger my hours and rest appropriately...it works well for me.

If they require a 40 hour week, is Saturday an option? You could work 6.5 hours 6 days a week possibly? I'm sorry that you have to worry about this on top of the disease itself....as you probably already know stress and worry is our worst enemy.

Speaking as an employer myself, I try to work with all my people to accomodate them...Our staff is our biggest asset at my firm and most people have been there a long time...we like to retain and keep good folks.

Talk to your supervisor or employer...maybe there are other options.

Take Care
JJ

I continue to work with MG but with a different schedule...I am self employed so I can schedule my hours as needed. Half of my work is physically demanding the other half involves sitting at my computer. I work about 6 hours a day, 7 days a week with a rare day off (as opposed to 4 to 5 days per week at 10-12 hrs per day...I miss my long weekends).

Sometimes it feels like too much and I feel like giving up, but I am still working. Every day I consider disability, but my doctor doesn't think it is necessary, and also I love working. In the back of my mind I really think I should stop working, at least so many hours...

I have other things that cause me stress which makes my MG worse sometimes. Sometimes I am so exhausted... But I can't stop working without some kind of financial help. I am still trying to figure out what to do. With Mestinon at least I can work for now and hope my MG doesn't get worse.

I am so sorry for what you're going through. My struggle with working has reached a maximum point over the past 6 months. I just posted about it all "Sorry it's been so long - Big News!". You can read that post to see what all has been going on. I've made several posts about it this summer.

It is so hard to know what to do. I'm a little better off in that I'm married and not the sole source of income, but it's still really tough. Do you have short and/or long term disability insurance? If you do, that could help buy some time (the short term anyway). I've just gone on long term disability and had to resign my job.

The key (which I did not do) thing is balance and pacing yourself. My doctor said to view it as you have a dollar bill to spend each day and you have to make it last all day. You can't borrow from the next day or save some and use it another day. I didn't abide by this and kept trying to "push through" until I reached the point I collapsed (lost my voice, could hardly breathe, couldn't walk, etc). It has taken me six months to get back on my feet. But, I still can't talk much, walk through a store or work at all. You don't want to push yourself to the point you collapse like this. It is very, very hard to get back if you do.

Will your boss let you work at home some? Do you have to be on your feet all day? Can you sit? Will he let you take short rest breaks during the day? Can you work more days and shorter hours like others suggested?

Please feel free to message me or email me at sharman.sherfey@gmail.com if you want to discuss details in more depth.

Your post reflects exactly what my life was like for two years before I gave up work. I worked 36 hours a week spread over 5 days. I had no life outside of work as every evening when I came in I walked my dogs and then collapsed. Every day off during the week was spent in bed sleeping, every Sunday was exactly the same. I slept 12 hours every night. No house work, no tv, no seeing friends or family. If I did any of those things I wouldn't be able to get to work. I still ended up taking quite a bit of time off work.

I could have coped if my employers had been more accepting of my illness, for 8 months I had no diagnosis. All they could see was I had one eye shut. They didn't realise thee affected every fibre of every muscle of my body. They wanted me to be on my feet all day everyday. I asked to change job roles 3 times as there were less physically demanding job roles in the company, I was denied this. They didn't understand that I did nothing outside work just so I could be there. My job was everything to me and part of my identity. Basically they bullied me out.

In June 2008 I collapsed, I mean really collapsed I couldn't walk, I couldn't stand and an elephant had parked itself on my chest. I was frantic with worry about my job. I knew that I couldn't continue, but I also worried about the financial implications. I had always earned more than my husband. Luckily we are ok, but there may come a time when we aren't. But I refuse to worry about the future, things will work themselves out. At the moment staying alive, getting a diagnosis and getting some decent treatment are my main concerns at present.

Its a tragic situation to be in, im 35 I loved my work. But my body told me that I had to stop, I was killing myself. Its not easy, but was made easier by the fact my neurologist told me (when I had the diagnosis of MG) that I would never work again and to get all thoughts of working out of my head.

It has taken me a long time to accept that I can't work. Its tough waking at 730am every day wondering what I will be able to do to fill the time in before going to bed. Im pretty much house bound. If it wasn't for the internet and text messages I would probably have no contact with the outside world. I have made wonderful friends from all walks of life on the internet and I now have time to appreciate my husband (we never saw each other when I worked we spent one day a week together), I have time to spend with my family, I can catch up with "real" friends (people that understand you are ill and make allowances for that). And I have you guys, who are all so very important to me and share this journey.

Giving up work has probably saved my life. Its tough, but living, even like this, is better.

Love
Rach

Dear Leaningin,
I too was the soul income with my husband and I and I had to go on disability due to MG because I was an ICU nurse and could no longer do my job. Fortunately, I had short term disability insurance which helped plus lots of built up vacation time and sick time because I never used it. I applied on-line for social security disability in Jan. 2007 and got my first check in April 2007. I then got medicare even though I'm not 65 exactly 2 years later. I Cobra'd my insurance from work until then. I know I was lucky compared to a lot of people and I am extremely grateful for it because there is no way I could work at all. Good Luck.

I have been dealing with my symptoms since Aug. 07 but was not diagnosed until Nov. 08 and got to the point where everything was involved. I have generalized MG and limb weakness, face & neck weakness, droopy eyelids, trouble swallowing and shortness of breath. Even after medication and surgery my weakness can get a lot worse if I don't monitor my activity. I feel like a gram taking all this medication and resting so often but I look on the bright side. My kids get a lot of snuggles and reading with mommy on the couch. My life is different since MG came along but it is just as full of love. I have been on disability since July but I have not worked since last year. Take care ~ Melanie

I have only been dealing with MG for about 4 months and I do still work. I am self employeed and that has probably been the only reason I have been able to continue to work as much as I do. I have a pet sitting business and have days where I may only have a couple of clients and others where I may be running all day. I do make sure on my busy days that I don't try to do anything but work. I am still learning to pace myself but as others have stated I learned pretty quick that I couldn't "work through" it. I have battled back and forth on the disability question too. I'm not sure my Neuro would consider my MG bad enough to qualify for diability. My other concern is that financially we can't live without my income while waiting for it to come through. I'm not sure what type of work you do but is it possible you could do part of it from home? I know someone else suggested working 6 shorter days instead of 5 long. I wish I had more to offer but you are so right about being under God's care!!! I wish you the best!
Kendra

I stubbornly tired working for two years after I quit my FT job (due to a B12 deficiency, MG as yet undiagnosed) in 1998. I finally had to stop being in denial and realize that I couldn't work. And I tried everything from FT to PT to occasional consulting work. I think not working is the main thing fueling my depression. It is very hard to make a decision like that.

I'm sorry you find yourself in this situation. Talk things over with your neurologist. See what s/he thinks about you working or if there are any treatments you can do to keep working.

I don't envy you a decision like this. I hope you can figure it out.

Annie

I had worked full-time with my MG for years. Several projects were handed to me that had me working until 3 in the morning in addition to weekends. Requests for additional help went unanswered. My neuro just kept beefing up the meds so I could work. I took 2 FMLA leaves to only to jump back into the fire again and crash. I think they wanted me out as pleas to the upper levels of Human Resources were largely ignored (I was a director in the company). I had a brief, drug-free remission right after being canned if that lets you know how much stress I was under.

I’m now unemployed and moved from Dallas to Detroit to live w/ my mother. This has been a big blow to the self-esteem as I’m 48 and made good money. I pretty much have my recent flare-up under control and intend to begin looking for full-time employment again, but now live in an area with 15% unemployment Oh well!

My question is whether to inform a perspective employer about my MG if I’m not experiencing any symptoms during the interview. I don’t want to be ruled out as a candidate, but I don’t want to be deceptive either, which could come back a burn me once employed. Any thoughts?

Jim
(Formally JimInTX)