7 Small Changes That Can Improve Life With Myasthenia Gravis

4. Baby Food 

Mish mash your favorite foods and eat. It’s better to have overcooked rice and millets than to struggle with it and overwork the poor facial muscles. No one is going to judge you on what you are eating and if someone does, you know what to do. Accept help from someone.

5. No Means No

I never learned this in my life, but now is the time to say it. Say no to…

Parties and weddings: Please tell me if you remember who did not come to your wedding or party from the long guest list that you missed terribly that day. No one misses the absence of a guest in a big party or marriage ceremony. It is fine to be cuddled in bed, conserving energy for the next day rather than being at an open air wedding, putting your lungs at risk and rushing to the ICU.

Movies: It is OK to say no to a movie plan by friends and family. Thank God we live in the digital age and have options galore: Netflix, Amazon Prime and 200 channels on TV. Eventually we shall get back to it but presently, chances are we might catch an infection from going to a movie.

Visiting guests: Say no if you are not up to it. If they understand, keep them in your friend list but if they get upset, chuck them right away. Also, unashamedly ask and ensure that they are not getting a cold or a cough as a gift for you.

6. Footsie

Silly me discovered this just recently. When bending down leads to breathlessness (like you just did 20 minutes on the treadmill at a high speed), you need to change the tactic. Use your foot instead. Of course, it is to be done only by those who have leg and calf muscle strength. But yes, you could use your foot to switch the floor buttons on and off, pick things from the floor or clear the bed with one leg swoosh (when no one is around to see or help).

7. Rest, Rest, Rest

It is OK to have a mid-morning, afternoon and a mid-evening power nap. That is like an energy drink for us.

These small changes can be incorporated when the going is tough. Once my medication went into effect, my symptoms subsided and I could see remission at the end of the (till now) dark, never-ending tunnel. Now I can get back to a more action-oriented life.

Till then my friend, the key word is OK.

It’s OK to take it easy and it’s OK to accept help.

Meanwhile, as always, a small, little prayer that the medical fraternity finds a cure for myasthenia gravis soon. Very soon.

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