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7 Small Changes That Can Improve Life With Myasthenia Gravis

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We are the “privileged” few. The chosen ones.

You know, the ones diagnosed and living with myasthenia gravis.

Myasthenia gravis affects 20 out of 100,000 people in the United States.

Aaah, now that we have the official stats in place, let us get on with the art of living a fruitful life with myasthenia gravis.

I believe acceptance is the first step towards managing neuromuscular disorders in general –myasthenia gravis in particular.

So easy to write. So difficult to imbibe and implement. No wonder I decided to write and speak about it only when I completely accepted that MG is a reality of my life.

I learned and accepted that it is OK to change my life and day-to-day living as per my health condition and muscle strength to make it easier for myself and indirectly easier for my family.

These are simple adjustments that go a long way in easing the discomfort from the fact that one is unable to do things all by oneself. See if you would like to incorporate the same into your life or that of your loved ones having neuromuscular issues.

1. Wake Me Up Before You Go Go…

…should actually be don’t wake me up before you go. Let me sleep till whatever time. It is OK to sleep till 8:00 or 9:00 a.m. I don’t have to jog or go for a marathon practice session. My body is asking me to rest a little more and I shall do exactly that.

2. Mugged

Yes, the mug in the bathroom. It weighs as much as the five-kilogram (about 11 pounds) dumbbells I used to effortlessly pick up at the gym 15 years ago. They are heavy to pick up as is – add water to that and I am doomed. So I found an alternate. There are smaller mugs available, a little bigger than your coffee mug! It suddenly eases the effort, both physically and mentally. It is OK to buy one.

3. Help 

A magic word. Help. Take help. From whoever is close by and/or is close to you. There are things you might not be able to do all by yourself today so it is OK to ask for help.

Bath: Oh, this is one is tough on those “bad” days. One has to psychologically prepare oneself for the event of the day! Ask someone to scrub your back. It is better than gasping for breath and being totally exhausted the rest of the day.

Changing clothes: Do you know how difficult it is to put your hands in the sleeves and pull a shirt over your neck and shoulders? It’s a task as difficult as climbing up the EBC (Everest Base Camp), except we do it each day. Take help from a family member, for God’s sake. Feel like a kid. Get pampered.

Hair wash: Hair wash day is the one of the most grueling days of the week. However, we now need to adjust the days and frequency according to our energy levels and muscle power. Each hair wash is generally accompanied by red, swollen, watery eyes because I am unable to keep them shut as tightly as before.

Solution? Lessen the number of washes if possible. Change your hairstyle as per each passing day. Day one: Ooo…blow dried hair. Day two: ponytailed hair. Day three: plaited hair. Day four: the gelled and bun look. Day five: Good Lord… hair wash day – but this time ask someone to wash it for you. And it is OK to ask.

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.

This post originally appeared on Pallavi Rao‘s blog.

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Thinkstock photo via golubovy.

Originally published: February 24, 2017
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