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Myasthenia Gravis Blog

5 Reasons why I decided to start my blog today

blog

  1. The last time I decided to pen down my blog, was the day I could not hold a pen or a spoon, type, speak, keep my head and neck stable, turn my body, sit, walk and well…to put it mildly, breathe.

The symptoms of MG had deteriorated after a bad attack of pneumonia. I had come back home after spending a horrendous fortnight at Apollo Hospital and thought I was on way to recovery. And suddenly one morning, I could do nothing. Not change clothes. Not breathe. Not turn. The shoulders weighed 200 kilos each. The neck was springy. It decided on its own which side it wanted to go and rest. I had to place my chin in between my chin with my thumb and fingers to keep the head in place.

Now you see the thing is this. We might be in the same room but till and until the other person doesn’t make EYE CONTACT, there is no way I can catch the person’s attention!

Why? OK, I shall tell you why!

To shout out or speak out the person’s name you should have a voluminous voice.

To wave ones hand, one has to pick that hand up and move it in the air and for that you need strength!

And when you have none, you wait for the other person to turn around and i…t………see…..m…..s…………….li….ke……an……eon!

As soon as Rahul finally turned towards me, I eventually did not have need to tell him anything as I saw his face turn white. I was immediately whisked into the car and rushed to the EMERGENCY.

wheelchair

It was a crisis.  A Myasthenia Crisis.

2. Today is a good day.

A term you would often hear a Myasthenic person say or not say depending on how his or her day is going! E.g. for me today seems a good one. I woke up with a smile and managed the morning deep breathing, lung exercises and bunched in 10 minutes of meditation too. More important I managed to brush my teeth with less toothpaste outside my mouth than inside at 6 in the morning!

3. Tomorrow is a Monday.

It is madness tomorrow onward till Friday. When the day begins at 5 in bed. Followed by affirmations, EFT, Pranayama and Yoga with gaps in between to catch breath. 6 am to 7 am is sonny time. His getting ready, asking for mom’s attention and love before scooting off to school.  After that it is the daily set routine time table of insulin shot- breakfast- medicine- bath- office- insulin shot- lunch- medicines- back home- insulin shot- dinner -insulin shot-end of the day.

Since there is no office today. It makes today a laid back Sunday.

4. There is no one home.

No one who wants or needs my attention nor time. This is the precious Me-time I have snatched for myself, to do my own thing. So while the husband and son have gone to watch the latest flick, I finally sit down to type.

5. I am told to catch your attention 5 points in the heading are enough and so this is the 5th reason! Ting tiding!

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