[mstywine]

in reply to: Grave with GO #1075065

Thanks for the info. When I really look back and see what I have been through – forcing myself to eat because of the severe nasea; sleeping sitting up on the couch for two weeks because of the pressure behind my eyes; getting a decent nights rest after three months of only a few hours per night; venturing out driving with a patch to alleviate the double vision; getting back to work half time for now; being able to talk about my disease without crying; – I feel like I’ve come a long way. I just hope that I can stay positive and keep working towards feeling ‘normal’ again. Thanks again.

Mary

[mstywine]

in reply to: new to the disease, and still lost #1075068

I am 54 and was diagnosed in May of this year. By the first of August my eyes were involved (protruding and double vision at all times) and I had RAI by the middle of August. That’s when I started feeling a lot like you sound. Very weak, losing more weight, not recognizing myself in the mirror and just generally feeling awful. I was fortunate to have sick leave and was able to take the next three months off. I found that taking the time for myself was very good for me. I hold an ice pack on my eyes for about a half hour after I go to bed and if I wake up in the middle of the night, I go get it again and it helps me go back to sleep; i would sit outside in the sun for a few minutes each morning; I love to read and found that I couldn’t so I got recorded books from the library and began to enjoy them. And eventually I gained some weight back and felt stronger. I also live in a rural area and have to drive 30 miles to work and it took me a couple of months before I felt ready to try driving at all. I now drive with a patch and do okay with it. I have gone back to work half time for now. The important thing is to find things you can do and still enjoy and time will help. I hope that sometime in the future I will be able to enjoy riding my bike daily again (in the summer, I live in the mountains in Colorado) and can get out and take walks (right now the wind bothers my eyes too much). Sometimes it just the simple things that you have to take the time to enjoy when there doesn’t seem to be much to be joyful about. I know it doesn’t help much, but hang in there. You sound like a very strong, capable individual that can get through this. Keep trying. It will be worth it when we are well and can look back and say I MADE IT!!

Mary

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