Living with Myasthenia Gravis

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An early lesson that all Myasthenics should learn is that Myasthenia and emotion are very poor bedfellows. Patients must accept the disease and learn to live with it and, at the same time, try to arrange their lives so that they avoid situations leading to distress, anxiety, emotional crises, etc.

DO’S

· Do adopt a positive attitude, and remain cheerful.
· Do visit your doctor at regular intervals. It is in the nature of MG to cycle a little.
· Do have a system for remembering to take your medication on a regular basis.
· Do take a warm drink, or biscuits, or a snack with your tablets.
· Do cut down on alcohol and tobacco. Better still, cut them out! Both can exacerbate the disease.
· Do eat sensibly and drink plenty of water.
· Do get plenty of rest.
· Do remain within your capabilities, pace yourself, learn to accept your limitations, and when you’re tired, REST.
· Do use any labor saving devices you can get.
Be sure that any doctor from whom you seek treatment for any illness fully understands your condition.
· 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. 

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 the darn thing. 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 and often is easier and more sensible.
· Don’t let yourself go. Remain smart and well groomed.
· Don’t forget that even athletes go tired, so REST.
· Don’t fret if your MG takes a dip. Myasthenics have their ups and downs just like everybody else. If you feel down, call your doctor. Try not to become downcast or depressed, remember others are worse off and tomorrow is another day.

- Reproduced by kind permission of the British Association of Myasthenics