I also had to go on short-term sick leave May 1st due to bad MG....For the year prior to going on sick leave, I was very ill and getting worse and worse...i really pushed my body to the limits...i wont be doing that again...Would prefer to have an income cut in half rather than make my body suffer....My job was also really stressful as well, so that didn't help matters...

I'm hoping that in time, I will get better and maybe be able to go back to school and pursue something that I can maybe do at home...Graphic design or something....

Hang in there....Hopefully, you will be feeling better soon! :)

Hi Sharman,

Welcome to the forum. It is a difficult decision to make. Just always listen to your body...it's never wrong.;) Take care and I wish you luck in whatever you decide to do. Keep us posted.

Hugs,
Pat

Hi Everyone:

Thanks, again, for all your feedback. It is helping me process everything. It is amazing to me reading all the posts in this forum how much everything sounds like me. I have a tendency to think everything is "just me." It has really opened up my eyes that I am not strange and "different."

I pushed way too hard for the past year, too. It ended up with me falling and breaking my foot the first week in December, which contributed to my spiral downward, I am sure - especially since I kept on working with, what felt like, a 100 pound boot on my foot!

When I tell my staff and friends that I am not sure what the future holds and if I will be able to go back full-time, they all say, "That doesn't sound like you. You're always so optimistic." But, they don't get it. It's not that I am not being optimistic, it's just that I am finally trying to be realistic, listen to my body and be smart for once.

I am feeling a little stronger this morning - last week was rough.

Thanks for all your support.

I teach high school full time. I took off 5 - 6 weeks after my thymectomy, it was right at the beginning of the school year. Throughout the year I took off about 3 days. I had the flu once and just needed a couple of days to rest. I take a short nap 2 - 3 times a week when I get home. I'm usually up late checking papers, so I only get about 6 - 7 hours of sleep a night. On the weekends I shoot for 8 - 10 hours. Now, I'm off for a couple of months on summer vacation and plan to take it easy.

Hi Sharman,
I work full-time! I was diagnosed nearly 5 years ago with mild MG but was "upgraded" to moderate about 18 months ago. I take A LOT of meds to keep myself going but I manage. Last year I was working full-time as an elementary teacher but now I'm in high school learning support. I also volunteer as a Girl Guide leader one night a week. I've never missed work other than 4 days last year after I had IVIG and was super weak. At my worst I couldn't walk up the stairs my school and had to get a friend to bring me tea at lunchtime, but my MG didn't really impact my teaching.

I hope you find a good balance and figure out your limitations. I need a lot of sleep - I get about 9 hours weeknights and almost 12 on weekends. In fact, tonight I think I'll take a bubble bath and hit the sack early - we had guests for the past week and I'm really tired!

Good luck with everything!
~Kathy

When I was first diagnosed, I cut my work hours down quite a bit. I had been a preschool teacher & worked 12 hours a day, 5 days per week.

When symptoms came in to play, I cut my hours to 7 hours per day, 3 days per week. I had a great run with those hours, even after I improved.

When I became a mom, I gave up the paying job to be a stay at home mom.

Now, 10 years after diagnosis, my symptoms are really gearing up. I'm at the point where I need help keeping my house going & my children tended to.

As far as you keeping your job, I'd advice to pick & choose what's most important to you. If working at the museum is feasible & good for your mental well being; continue for as long as you can. Fewer hours may not be a bad idea. If you can afford to have help with household chores, I'd invest in that also.

Jenna

Hi,

I think you can see from the posts here it depends on the individual. Here in the UK you have to be practically at deaths door before you can get plasma exchange or IVG sorry if I have spelt it wrong.

I have worked since I was 16. I worked when I was at university getting my degree. I haven't worked for the last year and have been medically retired.

I basically had to retire due to a total lack of support from my work place. I continually asked to be moved depts etc but they just couldn't or wouldn't accept that I was ill. I was living to work. I would work 9 hours on my feet all day in charge of 130 people and then I would collapse into bed and sleep for 12 hours get up and do it all again. I couldn't do house work or shopping or stay up past 7pm.

I was so tired I couldn't visit my family who live an hour away. My relationship with my husband started to come under pressure as we never saw each other. We would be in the same house but I was alseep! I realise now that I don't work how easy it would have been for us to just drift apart. I dont think it would have happened but it could of. Now that I dont work I make sure I rest before his day off so that we can do something together, even if its just sitting in the garden.

Even whilst working I was suffering double vision, blurred vision, generalised weakness etc etc. The stress eventually got to me and I ended up being hospitalised.

I look back now and wonder how the hell I did it? Now I dont work Im awake longer and can do more around my home. I would love to work but I dont know from one day to the next how Im going to be. Its the social interaction I miss the most- not the stress!

Good luck

Rach

Hi Rach
 

I can relate to what you're saying about the effort it took to you to work and not being able to do anything but work. The only difference for me is that I have a wonderful boss and supportive co-workers. But....I'm not sure if that's enough. My "bouncing back" from crashing the first of April is a lot slower than I thought it would be. I've learned a hard lesson about trying to work 50-60 hour work weeks. MG won't let you ignore it. It will catch up with you. I had planned to go back to work part-time mid-July but my doctor told me Friday that's not going to happen (not that I needed him to tell me, I already knew).

My faith is strong, though, and that helps me very much. Plus, I'm fortunate to have a supportive husband and 4 great children (now grown). It will all work out one way or another. I do get a little teary about it all, though. :)

I work full-time but it's so hard, most of the days i have double vision, and i have slurred speech. I do it, but it isn't easy, but i have to pay the bills!! My body sometime is telling me no, but my bills/rent is telling me yes.

Hey Shar!