Quote:
Originally Posted by AnnieB3
Simply because you are having "good days" does not mean that if you push yourself, your MG won't push back. How were you when you were working? Could you even work full time?
Social security is not based on your "good days" but on how many hours per week you could work. They also look at how many days you would miss due to being sick. Don't kid yourself into thinking you're fine simply because you've scaled back on things!  Very deceptive.
Try pushing yourself one day and see what happens.
Let the experts figure the social security out. Don't add fuel to the "you're fine" fire. You're not fine. The fact that you have had to dramatically change your life speaks to that.
I'm glad that taking certain foods out has helped. I hope you will get checked for allergies again.
Annie |
You are right AnnieB, thanks for the questions...I was working with MG an irregular 12 hours per week approximately, with times when I wouldn't work for weeks at a time...I was barely making it, sometimes too tired at the end of the day to eat, let alone spend time with my kids, finally decided it was not way to live...to take some time off and see how it goes. I feel so much better this way, but it makes me feel guilty, well, the disability application does, for now I am living on money I earned in the past and saved for emergency.
I already have a feeling that I know what will happen when i push myself, and one of these days I will, but I'm pretty sure I'll go downhill so I'm doing my best to enjoy some time not feeling week. If necessary, either to prove my eligibility for disability or because it has been denied and I have to go back to work, I'll be pushing myself some day.
I was able to work 12 hours a week, but that included a lot of unexpected time off, sometimes for over a month.
I know I'm not fine, really, I think I'm feeling guilty about needing help. The truth of the matter is that I've had to really learn a lot to get myself feeling like this, and it takes a lot of control not to go back to previous habits. I've returned to those ways many times and each times the MG gets really bad, and no amount of Mestinon makes me more than just barely functional.
I will go back to get my allergies checked out, but not yet, I've been overdoctored in that subject matter, and I got such little usefulness out of it. I'm still amazed that minimizing sugar intake can do this much, I'm actually starting to be turned off by extra sweet foods, my body is learning to stop craving sugar. I've told a few people, including my mom, and they all think I'm crazy...
I'm not fine, Annie, thanks for the reminder, none of us our fine. MG can really make a wreck of life.