View Single Post
Old 10-26-2010, 11:49 AM
mvoyvodich mvoyvodich is offline
Junior Member
 
Join Date: Oct 2010
Posts: 42
10 yr Member
mvoyvodich mvoyvodich is offline
Junior Member
 
Join Date: Oct 2010
Posts: 42
10 yr Member
Default My approach

Hi Jeff - I am experiencing the same thing right now. I've had MG for about a year and a half and it's been an adjustment. I am a contractor Technical Writer right now...and 40 hrs a week is soon to become something in my history. I've tried, but I think we have to listen to our bodies. If you can't do it, then you need to find an alternative. Perhaps you can find work that you can do from home, which would cause less daily stress (i.e. getting ready, traffic, etc.). I worked from home the first year and it was very helpful because when ever I became tired I could take a nap. It allows you to use your time differently. I'm currently looking to get on disability and work only part time. I think this maybe the option for me at this time. Also, one thing that I'm trying to do, and I hope you can to, is look at other options. What are your natural talents--what are things you enjoy that you can do??? That is probably the direction you should begin to shift your career. I love to paint pictures. It's low impact and I can do it inside or outside, when I am feeling good it works for me. Of course if I'm having a bad day, even the paint brush is too heavy. Maybe you can start an online business.

Also, another thing that I do and I've noticed dramatic improvements in my overall condition is I eat a gluten free and sugar free diet. It doesn't stop my weakness. I still have good and bad days, but it does reduce my flare ups and keeps me from getting run down fast. Most importantly I get a lot of rest and don't push myself. For example, the first muscle for me that usually gets weak is my eyelids. As soon as I feel my eyelids get heavy I stop what I am doing and rest. A cold compress helps, but seems to provide me only temporary relief...and I'm a wuss, I don't like to be cold, so I don't usually do that. I go to bed between 830 and 930 every night, no matter what. I made a routine for myself. You have to kind of play with your routine to find out what your body needs and then listen to it.

I know money is important, so we need to work. At the same time I know that I will most likely spend as much as I make...so it may be an adjustment, but in my situation I'm coming to the reality that I need to live on less until I can find an alternative solution to the standard 40 hr week. I see this as a temporary solution and believe when one door closes another one opens, so I am looking to make the opportunity that fits my needs the best.

I hope this helps, if not...well...thanks for listening.



Quote:
Originally Posted by Jeff_159 View Post
I'm having a horrible time with work. Whenever I look at text its double, so I can't code anything or proofread documents. I'm also having attacks where I can't open my eyes. I've tried an eye patch, but my other eye gets blurry and shuts after a few minutes.

My doctor wants to correlate IVIg with the thymectomy, but I'm afraid this will drag on. If I was a permanent employee, I would tell them what's going on, but I'm afraid now, they will say they don't want to bring me on. Any advice is appreciated.

Jeff
mvoyvodich is offline   Reply With QuoteReply With Quote