Welcome to this forum!! Am so glad you found this site! Its a great source of support and information for all of us, we're glad to have you here!
MG affects everyone differently, as most autoimmune diseases affects everyone differently too. So don't stop yourself from acknowledging what you are feeling just because others have it much worse. ITs okay to feel horrible, we all do at times!
Find somethings that you love doing, or enjoy doing, and save some time for yourself to do it. Talk to your neurologist, its okay to tell him what you are feeling, be it good or bad, as he may be able to do something about it. Some of the things that I love doing, such as swimming and running, have to be put on hold for me, but I stop thinking about that. I find other things that i love doing such as designing, and start focusing on what I can do. I love taking short walks in the garden, with the breeze its just wonderful. I am still able to bake on some days, and all these just makes me feel useful and so mmuch better!! I try to work full time, just that transport's a problem, so it has to be put on hold as well for now.
I still make it to my office occassionally, perhaps 2-3 days a week.
Come and rant here when you need to! Or you can just share your happiness with us when its a great day for you!
Quote:
Originally Posted by Ckitty60
I am new to this site and I am so glad I found it. Reading your journeys has really helped me know I am not alone. I was diagnosed about 4 months ago but have had MG at about a year and a half. I am on 60mg Mestinon 3 times a day, time release Mestinon at night and Imuran 100mg at night as well. I have been on the Imuran about 14 weeks so it may be a little early to tell how much it is helping. I work full time and that is pretty much all I can do. My husband does all the laundry and my daughter does the dishes and buys the groceries. I can cook supper now which I could not do for some time. On a good day I can go to a store if it is not late in the day. And I will say, I am having those days more often than I was thanks to the meds. The meds are helping but I am still weak all the tired all the time. I really can't say that I feel good ever. But I can go to work every day it''s just not easy. I do better when I am at home and can go at my own pace. I just don't know what I should expect. It's all very confusing. I go back to my neurologist soon and I know he will ask as he should, how I'm feeling and it's really hard to explain. I don't want to say I am doing horrible because I know and have read posts of those who are in worse shape than I am but on the other hand I can't really say I ever feel good. I start my day weak and fatigued and end my day more fatigued and somewhere in between the Mestinon helps me get through. Most days I get up and wonder how in the world I am going to do it but I do and it works out. I have ptosis in my left eye and my arms are very weak, especially in the morning when I try to dry my hair. I have a hard time getting through that. My world has gotten very small. Work takes every bit of my energy. I just can't do much of anything else. I know this is bound to be very familiar to those of you reading this. Weekends are reserved for resting up to get through the work week. Are there others of you out there who are are trying to work full time who are going through the same? I also have peripheral neuropathy that I have to be on Topamax for. I have internal tingling in my face and arms mostl. I also have tremor. The Topamax helps keeps this under control. This all started about the same time the MG started. I am very thankful that I can work. I just wonder how long I can keep pushing through like this. I would reallly like to be able to at least do some other things in life. I guess I just don't know what I should expect.
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