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5 Reasons Why I Decided To Start My Blog On Myasthenia Gravis

I was diagnosed with a rare autoimmune disorder called Myasthenia Gravis way back in 2005. I was then too busy trying to understand this neuromuscular disease that had me in deep water. Unable to cope with a life suddenly dependent on others and having lost my voice due to Thymectomy surgery, I did not have the courage to speak about Myasthenia Gravis for years. It is only now a decade and two years later that I have accepted and embraced the issue and mustered up the courage to write about it.

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Here are 5 Reasons Why I Decided To Start My Blog Today

  1. There never was a good day until now.

The last time I decided to pen down my blog  was the day I could not hold a spoon or a pen, 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 pull up my chin with my thumb 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 LOOK at ME, 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 one’s 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 to tell him anything as I saw his face turn white. I was immediately whisked into the car and rushed to the EMERGENCY.

 

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It was a Myasthenia Crisis.

And much as I wanted to write about the experience then. I couldn’t.

 

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.  Yes, Myasthenia Gravis patients can exercise too, at times. Read more about it here. 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 until Friday. When the day begins at 5 in bed. Followed by affirmations, EFT, Pranayama, meditation and Yoga with gaps in between to catch my breath. 6 am to 7 am is sonny time. Him getting ready, asking for mom’s attention and love before scooting off to school.  Post 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 or 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 this is the 5th reason! Ting tiding!

If you want to know what fun life can be with Myasthenia Gravis giving you a tough time, do subscribe to the blog. If you know of people fighting this rare-autoimmune disorder do share this blog with them too.