Sunday, January 16, 2011

So . . . I have been searching for information about how to change my lifestyle and daily living now that we have found out that I have Myasthenia Gravis. I haven't found that much. So here is a few tips I learned today, if you now have the disease, and would like to go to a dressy function. I speak from experience! Today I was getting ready for my niece's baptism, which was very beautiful. While getting ready, I kept bumping up against things I would have done without thinking, hitting a wall and having to adjust.

1. Take a shower the night before. I made the mistake of waiting until this morning of the event to take a shower (figuring then I could blow out my hair all cute). I was able to do it, with a break after the shower, but in general, just washing my hair while taking a shower tires my arms out. Then, holding a hair drier and round brush to get through the hair was very taxing. At least my hair came out pretty good.

2. Find a mirror that you can walk right up to. I used to love eye makeup for special occasions. I have a very cute Bobbi Brown eye gel that I always would wear. My standard procedure would be to line, curl, then apply mascara. Now this requires quite a bit of eye-lid work. I skipped the curling all together. I cannot close one eye and keep the other open in a controlled way, so my alternate plan was to walk right up to a mirror, look down, and line while both eyes were looking the same way. I also held the side of each eye while lining to keep it still. Then the mascara - Gone are the days of me throwing my head back with my mouth hanging open like a drunk person, and looking up to get the mascara on. The only way I could get the it on was to look down, head back, and apply under the lashes, or to keep eyes open and just dabble it on while trying not to blink. All this while the mirror is only an inch or two from your face. I'm not sure this is worth it, but I think my eyes at least had a little kick today.

3. Sit to do as much as possible. Dressing, lotioning, resting, brushing teeth - whatever you can do sitting, please do so you don't tired yourself out.

4. Don't underestimate the car-ride over. By the time I finished the eye makeup, shower, and hair, my arms were flagged. I had to move on with getting myself and the family out the door. I had a moisturizing foundation (yes, bobbi brown, my favorite!), blush, and lip gloss stuck in my purse, and did it in the car on the way to the event. The last 10-15 minutes of getting out the door we use totally different muscles than our arms, so by the time I sat in the car, my arms were fine. Then I could apply these final touches with no problem.

5. Wear your sunglasses. I just bought new polarized sunglasses that really take the edge off of light for me. They pretty much change bright white lights to more of an amber. So throughout the day I would discretely put them on. Today I wore them during the baptism service (overhead lighting in churches and theaters can really tired my eyes out), when I went to the bathroom, and when I was about to leave put them on before going outside to get a few extra minutes of rest for my eyes.

6. Budget your talking, eating and smiling. I am a natural smiler. It is an instinct for me to smile while having a conversation, when walking into a room, while talking to people, and especially at special occasions. So, this is particularly difficult for me. As often as I could, I would consciously not smile so I did not tire out the muscles that I use to smile. I have not mastered this in the least, but I will remember it for next time. The talking actually went well for me today. I'm surprised by how many dumb things I want to say and how quick I am to not listen to people, or to just feel like if there is silence it needs to be filled with my voice. Plus, then I could really think about what they are saying, and only respond with an answer that is more succinct and hopefully apropos. I could eat today really well, but if you are struggling with swallowing and chewing - pick some fav foods and enjoy.

7. Have fun! Enjoy everyone's company and the festivities. I totally did today!