7 Small Changes That Can Improve Life With Myasthenia Gravis

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.

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