Here is a discussion on coping with MG at work:

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/14678400-how-cope-work

Here is a tip for dealing with double vision:

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/13995856-scotch-tape-tip-4-double

Here is another discussion on working with MG:

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/15280744-working-mg

I have short hair and wash it in the shower. I am often too fatigued to shower. so do sponge bath. My hair is a little curly so just wetting hands and running thru hair helps. I try not to wash it too much. Cannot really blow dry guess I need a smaller less heavy dryer. For long hair there is a product sold in drug stores to dust into hair and brush out. Helps oily hair as well. If I have to go somewhere I shower the day before and pick out my clothes. Let hair dry naturally and use curling iron next day. I am too fatigued to do all that on one day. Here's to being beautiful! Karin-:)

Cheap Towels.


Over the last 20 months I have learned to “manage” my daily activities around my MG and I wanted to share some of them. They are true for me, but, it could be different for you. I just hope that it creates some awareness of your own daily life.

1. How dirty are you? Unless you have been wallowing in mud, a sponge bath for all the strategic places should be sufficient.

2. Or, if you have slightly more energy; the WorldWar2 ration of a 5 inch bath is enough to splatter yourself with to get clean.

3. If you do take a real bath, do not do hot, and do not stay long. A little oil will save you body lotion application. Just be safe getting out of the slippery bath.

4. Forget expensive 300-treath towels, they are too heavy. Cheap thin towels save your muscles. At bath - and laundry time. Also, do not go for the heavy luxurious bathrobe either, it will weigh you down.

5. Rest after cleaning, otherwise you are behind the eight ball from the start.

6. Eat a hearty breakfast; it might be the only meal you can swallow that day. I find that if my food turns into starfish shape and have to gulp to swallow, I just stop eating. Eat little portions during the day.

7. Do not waste energy getting to places. Use a car to get there and then walk the place you want to walk. Wheelchairs are also for Myasthenics!

8. Most valued tools on weak days & in hospital: Eye bag & iPod! My eyes are the first to get tired, making reading, computer or TV impossible. I lay down with a good book on my iPod & get lost in the story with a nice- weight eye bag to still my eyes. Sometimes it only takes ½ hour to recover, while if I would have tried to push myself I would end up in bed full time.

9. Light & noise are a huge issue for me. I carry earplugs & sunglasses for noisy places and restaurants.

10. When having a conversation, ask people to sit down. Ensure you’re on same height or place them lower. “Looking up” is a sure way to get tired eyes & fallen face with drooping mouth. As soon as I start to feel like I am looking from under a baseball cap; I know I have to rest. Do not apologize. Go and retreat. Friends do understand.

11. I avoid big dinner parties with multiple conversations. I find a group of 4 at dinner table manageable. I often ask to have one conversation at the time. Big lesson with MG is to learn to be assertive. However, it’s preferable to being in hospital with a flare up.

12. Do not look up to television. You’re wasting energy. Slightly downward gaze with your eyes is most comfortable.

13. Reinvent yourself! Due to medication (prednisone) I was swollen to twice my size, a nice round moon face with a good red flush. Nothing fitted, and dressing was quite the ordeal. I re- arranged my closet with help of a friend and went out to buy or borrow size tents tunics without zippers or buttons & choose new colours to suit me new face . Changed hair colour & make up to suit new complexion. Beautiful scarves hide my buffalo neck. Just some ideas to turn something negative into positive; you can embrace the change rather than look at all your old clothes in your closet you do not fit anymore.

14. Ask for help. You do need a good advocate who can speak on your behalf on bad days and in hospital. Also, friends & family will be happy to actually be able to do something for you. I have re- organized my pantry, closet & kitchen for easier access and as reward, treated my friend to a nice glass of wine with a sandwich and good gossip. I wipe but do not scrub, and sweep but do not lug a vacuum. I have friends & family (thank you Kees & kids) who do the heavy cleaning.

15. Be your own Advocate. Be aware of your triggers. Keep a journal for medications, treatments & symptoms of a weak day. It took a long time for me to connect the dots, to realize the consequences of my actions. I thought I would save you some time so to have some extra muscle for the fun things in life. A journal is a good place to get the bad thoughts off your chest! It might help with difficult days.




By: Willeke
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Here is a link to a discussion about a cane tip for extra flexibility and stability:

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/15973220-new-cane-tip/lastpage

More good ideas: thanks, Kimberly et al.

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/16182022-make-life-easier-these

even more good ideas:

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/16712254-assistive-devices-and-short-cuts