How I ended up in a wheelchair

Today I would like to update you on how my body suffering from myasthenia gravis hinders my daily life.

As u know I haven’t been doing well the last few months. I haven’t had a decent night’s sleep in four months. Sometimes I only sleep 2 hours a night. Now since I haven’t been sleeping well, the weakness in my limbs has turned to partial paralysis. Not having use of my limbs makes typing really challenging. Still mornings when my limbs aren't as paralysed as in the rest of the day I write and keep u all posted. 

So how come my wheel chair is my best friend today? A month and a half ago, I woke up one day and felt the heaviness in my limbs, the signal they send me to say “YOU HAVE LITTLE USE OF US TODAY AND IF YOU OVERDO IT WE’LL SHUT DOWN COMPLETELY. GOOD LUCK!”

I heard what they told me yet but I continue with my usual household chores like loading my washing machine, cleaning the washroom,etc.. I said “I do what I want! You don’t own me.” I moved too much anyway. I pushed too far. Bam!!!.
My muscles completely shut down. Usually, I can rest for a few hours and they’ll come back to life, but it was different this time. 

I haven’t been able to stand or walk since and my wheelchair is my constant companion now.

I have read jokes in the Pinterest that Myasthenia Gravis is like a Harry Potter spell. If it was a Harry Potter spell, it would make your limbs turn into gummy worms.

The first few weeks when this started I needed help with every basic task, including getting to the bathroom. Since then, I’ve gotten some of the independence I had before back, but I still need help getting up from the wheel chair and even eating my food, coz my arms font allow me to lift the spoon till my mouth.

I still have intermittent use of my arms.  I have had periods where the paralysis intensifies and I can barely get around my house with my crutches, or I'm not able to walk at all. But the longest I've ever been unable to walk is 6 hours. This is a new normal indeed.

My whole body has become so weak and deconditioned without any movement at all. All this time I’ve been trying to imagine how I’m going to rebuild my strength. It’s a daunting task. Imagining just walking from my bed to my bathroom again feels like climbing Everest. There’s no chance to rebuild my strength right now because any time I try to use my muscles the more the paralysis sets in. THAT’S TYPICAL FOR MYASTHENIA. USING MUSCLES DRAWS THE the ANTIBODIES FROM YOUR BLOOD INTO THE MUSCLES, MAKING IT WEAKER AND WEAKER.

So I’m not completely sure how I’m going to climb out of this. I’m honestly just trying to go with it, take it day by day and moment by moment. My body makes the rules so I'm just trying to finally learn how to follow its lead and not fight against it. The harder I fight, the more I sink in the quicksand. It's better just to roll with it, literally. 

So I continue to wait.

When the paralysis was so intense that I needed help with every basic task, I had informed my NEUROLOGIST about the same who in turn told us not to go to take this as crisis unless my breathing has completely shut down. So the off n on paralysis of my limbs that's going on is the non crisis form of myasthenia, which has no cure and I have go through it unless I can try to avoid it through increased resting periods.

Trust me it’s INCREDIBLY FRUSTRATING.
Not going by my neurologist's words completely I have started trying to put in efforts to move around without my wheels atleast for a few steps...though i wobble like a penguin..still I think I have been making progress than I had been able to almost 10 days back and I shall continue my efforts.

I think I have an idea of what happened that I ended up in a wheel chair. I got over-ambitious. I was in denial about how much I have declined in the last 6 months in general. Ever since that day that I screwed up, took my body for granted, and tried to be a super woman, I haven’t been the same.

 But it’s often fruitless to backtrack and try to figure out how or why. Illness often has a mind of its own and control is an illusion. Trying to find a narrative that explains the 'how' and 'why' often is a pointless endeavor.

Although this crisis has been challenging for Etan and I, we have started adapting to it. I have adjusted to using the wheelchair all of the time pretty well. We’ve come up with solutions to help me maintain some of my independence and preserve the strength and energy I have. Each night, my
Etan fills me with motivating words to help me start a beautiful and positive day the next morning.
It may sound strange, but in some ways this crisis has given me more resilience. I was extremely depressed the few months before this because I was having difficulty moving, walking, or seeing any of my friends and family. Yet, this has given me a huge appreciation for the independence and mobility I had. It has given me more determination to move again and get my strength back. 

But I’m determined to be able to have enough use of my arms and enough energy to do all my favourite activities again.

I admit Even though I’m still not well, I still feel satisfied with life in many ways. 

In times like this, I've learned you have to find strategies to not let frustration overwhelm you. It can start a fire that consumes every part of your life. You have to fiercely guard what joy you still have. Ultimately, I've learned GRATITUDE  IS THE ANTIDOTE TO SUFFERING!!!!