Some "Do's" and "Don'ts" for Myasthenics

Even though I've been living with MG for about two years, it's amazingly that sometimes I forget that I have it. So I also forget to take care of myself properly and to avoid situations that will aggravate it. Then too, I will sometimes do something that I know is risky or flat out stupid. That's crazy, I know, but it's true. For those reasons I will, from time to time, seek out articles about living with myasthenia gravis - just to remind myself about what I should and shouldn't do. That can be a lot of reading. But the following list of do's and don'ts, provided by the British Association of Myasthenics, makes getting a refresher course quick and easy. It would also be helpful for close friends and family in understanding the disease. Feel free to bookmark this post so you can come back for a review once in awhile yourself.

Do's and Don'ts for Myasthenics




Myasthenia Gravis and emotion do not make good bedfellows. MG Patients should accept that they have the disease and learn to live with it. They must make every attempt to arrange their lives in such a way as to avoid situations that can lead to distress, anxiety, emotional crises, etc.

DO'S

· Do adopt a positive attitude, and remain cheerful. You'll feel better and the people around you will also.
· Do visit your doctor at regular intervals. It is in the nature of MG to cycle with ups and downs.
· Do have a system for remembering to take your medication. Most cell phones allow multiple alarms.
· Do take a warm drink, a cookie, or some kind of a snack with your pills.
· Do cut back on alcohol and tobacco. Better still, quit using them. Both can exacerbate symptoms.
· Do eat sensibly at mealtime and remember to drink plenty of water.
· Do get plenty of rest.
· Do understand your capabilities - pace yourself, learn to accept your limitations, and when you're tired, just stop what you're doing and REST.
· Do use any labor saving devices that are available to you.
· Do use eye drops and eye gels to relieve your eyes from becoming dry. Failure to close the eyes completely, sometimes leading to poor blinking, can result in the loss of the "windshield-wiper effect". Dust and dirt, therefore, are allowed to accumulate in the eye. If the eyes do not close completely during sleep, the cornea (the clear membrane in front of the eye) dries out and the eyes become red, crusted and hurt. Use eye gels to lubricate the eye, and patch the eye in the closed position before sleep.
· Do carry an identity card or disc.

Remember symptoms vary in kind and severity from day to day. We are adversely affected by weather changes, and extremes of heat or cold. We can also be adversely affected by extremes of emotion. Ideally the Myasthenic should live an utterly placid life in a permanent temperate climate, but as we are all human being we have to make the best of what life can offer us.

DON'TS

· Don't battle grimly on, determined "not to be a nuisance". If you can't manage something, swallow your pride and ask for help.
· Don't rush. If it looks like you're going to miss the bus or train, go ahead and miss it. There'll be another.
· Don't try to exercise affected muscles beyond normal usage, because this leads to needless exhaustion.
· Don't take any medication unless you have checked with your doctor first.
· Don't get into highly stressed or emotionally charged situations. Live as placid a life as possible.
· Don't get too hot or cold. Temperature extremes are weakening.
· Don't have very hot baths. If you can, have a shower.
· Don't try to eat huge, heavy meals. Little meals and more often is easier and more sensible.
· Don't let yourself go. Remain smart and well groomed.
· Don't forget that even athletes get tired, so REST.
· Don't fret if your MG takes a dip once in awhile. Myasthenics have their ups and downs just like everybody else. If you feel down, use self talk or relaxation techniques to brighten your mood. Avoid becoming downcast or depressed by controlling your thoughts. Remember that others are worse off and tomorrow is another day.

Recommended Reading: The Mystery Guest, MG


Acknowledgement: Edited from an original post by the British Association of Myasthenics at myasthenia.org.au