I love early mornings

Through blackest night, morning gently tiptoes, feeling its way to dawn." 

~ Robert Brault ~

Night-owl, that's what I used to be.. but with my illness that's changed. By night, I am worn out and my sharpness fades. It's not the deep sweetness for me that it once was.

  I prefer the early morning now...when it's so early that it's still dark. I feel hopeful...fresh.. quiet and pleasantly expectant.  I await with a happy mind enjoying the uncertainty..expecting that anything could happen in the hours ahead.

And I am ok with that. Change is as it should be, and being a morning person now is good in its own kind of sweet way.

I love the fresh possibilities of early morning...

Have a wonderful day!

I don't hide my feelings anymore!

I used to hide my feelings and my illnesses from my family, my friends and sometimes even my husband.People close to me knew I was sick, but I tried really hard not to discuss it. I would say things like, “Oh, I am doing great. I’m fine, don’t you worry about me.”

I said these things because I was afraid. I was afraid of the awkward silence that tends to follow being honest with someone or people thinking I was faking because I don’t look sick. I was afraid of comments like, “Oh, I once had a really bad flu, so I know how you feel.” I was nervous people would avoid me because they didn’t know what to say, and so they would say nothing. I didn’t want people to think I was the girl who complained all the time.

I was afraid my father would cry, and that I would have to comfort him. I feared my kids would internalize having a sick mom, one who couldn’t be normal like Naman's mom. And I didn’t want to add more weight to the world my husband already carries on his shoulders. I was afraid of all of it.

After years of hiding and being dishonest and unauthentic, I’ve come to learn a few things:

Telling your story helps you heal emotionally.Telling your story helps educate people. It helps them understand exactly what you are going through.Some people may judge you, and that’s OK. Learn to let it go.If people don’t know the truth, they might make assumptions when you cancel plans at the last minute or tell them you’ll let them know.You will learn to let go of other people’s reactions. They aren’t yours, anyway.People will surprise you with their kindness. People can be awesome when given the chance.Being vulnerable enough to share something that scares you is empowering.Telling your story puts control back in your hands.Telling your story opens you up to a world of people who, upon hearing your story, can say, “me too!”

With the help of your new found transparency, you will learn tips and tricks from others with similar issues as well as how an unexpected kind word can brighten a bad day.

Now I am the girl who leads with her story. If you meet me and we plan a coffee or lunch date, you’ll probably hear me say something like this, “I am so excited to have lunch with you, I’m chronically ill and some days I get sick out of no where. If that happens, I’ll let you know.” People are usually very kind about that, and I’m comfortable because I’ve set clear expectations and shared a little about what my life looks likes from the very beginning. This helps me deal with the heartbreak of people calling me a flake, or telling me to just suck it up. I set the expectations now, even though I can’t control the reactions.

I also tell my family and my husband when I’m not feeling well. This helps me avoid snapping or losing my temper when I’m sick or in pain because I’ve been proactive and have asked for help or space. I said this before, but I want to say it again – people can be awesome when given the chance.

PNES SEIZURES...I accept it with no shame!

I can recall with vivid certainty the moment that I received the second blow of my life after myasthenia gravis.
It was a night after the family had dinner, after I had spent the day whining about my office, my inabilities, etc..and listening to the never ending sermons from anyone and everyone my eyes could actually see.
Up until that day, only about my husband had seen one of my seizures.

Of course, after many more seizures, the inevitable happened. I pierced my tongue with my god gifted vampire teeth and I bled profusely after a serious seizure which this time involved severe chest jerks too ( like those in exorcism movies i guess•04).
Well let's accept the various anxiety and anti convulsion medications failed to help.
I was at the point where I needed someone to figure out why I was having seizures of all shapes and sizes, before I stood in front of my family as the healthy MG recovering patient, I was desperately trying to be. So, I received a 40 mins EEG, during which time I had only three clonic-tonic seizure.

But that one seizure was enough to result in a diagnosis: I did not have epilepsy. My brain succeeded in duping the EEG  machine by not showing any "spikes" which is what is the deciding factor for the doctors to treat me or let me go in whatever state I might be (declaring it stress induced so all in my head). But how can that be factor to decide the patient dint need help and be left to hurt herself in that unconcious state followed by the complete memory loss?
So it was declared I have Psychogenic Non-epileptic Seizures. Even as the incredibly kind and sensitive neurologist offered me an explanation, I couldn't help but wonder why so many qualifiers were needed within the diagnosis: Pyschogenic Nonepileptic Seizures -  these words seemed more important than the seizure diagnosis.
As my doctors strolled out of my room, arguably on their way to see patients with "REAL" epilepsy, I just sat in my hospital bed trying not to choke on the crazy diagnosis.

So in a layman's language PNES attempts to articulate the IMPOSSIBLE: seizures that just happen, not for any reason one can see on an EEG.
So an easy way out, PNES as a result is now attributed to trauma, with seizures functioning as a way to encounter deeply repressed trauma (ahem ...i dont remember to have repressed anythng.. i cant even repress food which is proved through my froggy burbs).

But yes there is another theory; my pain response is not a match to the severity of the migraines I face. Hence, the seizures are (maybe) a way to try and articulate and even control the migraine pain ( my body seriously needs some lessons on how to handle pain..why the need for such drama!). Of course, there are many, many articles reporting the suicide due to migraine estimating that migraine pain can lead to suicidal thoughts.
So I guess attributing my seizures to migraines would be a much more comfortable way to explain my disorder (medical practitioners are you listening...it's a clue”9ý2)

But that isn't how I learned to overcome the shame attached to PNES. I overcome my shame in the same way I have (well..wudnt lie..m still in the process) overcome shame about my walking, eating, speaking disorders gifted by Myasthenia Gravis-  by talking about it (I call it spreading awareness about it), and more importantly, REFUSING TO APOLOGIZE FOR IT”9Ú4.

To those with any seizure disorder, I can say I know the horror you feel upon returning from a seizure; looking back at those faces of confusion, panic, disgust and sorrow and you are not able to remember what exactly happened jus before all this.
I can say, I feel the same fear to go out alone, to commit to things (like my job), to push myself to be the person I used to be before all this happened. I am afraid of having a seizure in the bathroom or in front of coworkers. I am afraid of being alone, as much as I AM AFRAID OF BEING WITH PEOPLE.

I feel those things because I have a seizure disorder. But the main issue that is poorly explained is the fact that though PNES is  nearly as prevalent as multiple sclerosis it is made much worse when we have to go through it alone, entrenched in shame and humiliation, afraid to talk about our disorder.

But I believe I have the power to change that by refusing to be stereotyped and by reclaiming the life I once believed would always exist. I am a successful, professional, well-adjusted and happy wife Mother, daughter, employee, friend,  and human being. I also have PNES. And I am tired of feeling like I have to apologize for having PNES because it isnt well understood, because it can sometimes be ugly, because it can sometimes be inconvenient and because I can sometimes be scared as hell.

Well, I am going to do just the the opposite - I will tell you about it. I will talk about it because i feel more people need to, and by doing so, we can all feel a little bit less shame, and a lot more in power and in control. Is it not?

Adjusting to my new life.

A  Life-altering diagnosis...if that's what life surprises you with...what do u do?

You have no option but to redefine everything you know.

If you want to improve your physical health and emotional well-being along the way to your new normal, you will find out how to make new choices and learn from past ones and most importantly, you will come out stronger and more in control of your medical outcome than you ever thought possible.

So basically whether you like it or not Life changes!!!!

Normal isn't going to return even if you find a successful treatment plan and even if your pain levels are managed. Normal is long lost!!!!

I have been through a lot pain-wise, diagnosis-wise, and life-wise in the last five months. The people I expected to be there for me weren't. I had to change my careers and life plans and even had to give up most of my favorite activities.

Life has changed and nothing is the same, and I am aware my life will continue to change.

Though I wasnt prepared to redefine normal when my health worsened, the major events in my life required me to prepare myself for a potential new normal and today I am sharing my humble attempts in doing so.

Firstly I redefined my dreams.

The changes that my illnesses brought along required me to take a whole new look at who I am are, why I am here, and what I need or hope to accomplish. My dreams haven't changed jus that the timing and the path has changed. Now I regularly and religiously assess and reexamine my life so as to realign my new and changing normal with good self-care.

Secondly I have redefined my role as a patient since I am constantly on a rollercoaster of information, decisions, and intense feelings. I have made my choice to be a proactive patient. And just because people don’t see the physical signs of my disease, it is important for me to speak up about what accommodations and help I may need and that is okay!

The treatment and lifestyle choice is based on my own instincts and I endeavour to make a positive change.

Thirdly I have redefined my life journey.

I am putting in all efforts to redefine my life's purpose, to develop a more positive attitude and become empowered physically, emotionally, and mentally so as to develop a better sense of self.

Jus because my health condition tends to fluctuate I have not complicated my redefining process.
I have realised that if you view your life as a journey rather than a destination, you will be better focused on the big picture. And the journey—not the destination—is the best part of finding who you are.

Normal will keep changing!

Because I am chronically ill, it is even more important to look at my current normal and how it will change and evolve based on the limitations imposed by my illness.

I can’t go back to who I was when I was healthy, but that doesn’t negate that who I will become won’t be just as worthy as who I was before. I look forward to seeing who I become if and when I finally feel better.
And I have choosen to live with awareness about my illness and normalcy, and work to rise above my limitations.❤

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!!!!

Flying with bruised wings

My wings...torn from feeling isolated and different from my friends and family.  My wings...bruised and scarred from the IVIG treatments, litany of medicines and their unmeasurable side effects, weight gain, intermittent paralysis making me differently abled, at times unexpected...  my wings became so bruised and weak that I started to think..or rather believe at one point, I might never fly again.

But NO! Even with my bruised, scarred and sometimes broken wings, I am still managing to keep flying. And despite the hurt, I am still carrying hope in  my heart...m still carrying joy...still carrying my dreams….

But realistically... can I really fly with these wings? Yes I can because I have been sharing my story...my experiences..my pain with all who mattered to me.  I wasnt hiding behind my shame for not being healthy and able, as the rest....no more!
I m not wearing any mask to hide my broken smile so that my loved ones could see my heartache.  
Most importantly I did not want to fly alone, but together with the beloved people in my life..because people need people.
I have accepted the fact that I need others to help me carry some of the weight so that I am free to soar high above my  circumstances....high above my hopelessness...high above my fears and doubts. I want to fly with others to keep those dreams, that God has purposefully planted inside the soft, fertile soil of my heart, alive. 
I believe God wants me to not only water those dreams with my tears that I shed while calling out to him, but also to cultivate my dreams through the faith, support and words of encouragement from my loved ones...YOU.. so that they can grow. 

Honestly the second someone whispers encouragement into my ear in the form of a message or card or a hug or a prayer... I somehow seem to rush to grab it...trust me it helps me to move forward.
I guess God knows this about me…and you…

He doesn’t want me to feel alone...that is why He has placed you in my path to mend my broken wings so that I can fly a little bit higher...soar a little bit longer.  He wants me to share my thoughts and feelings with you so that you can provide me the strength and the momentum I need to keep hoping that things can change... to keep my belief that they will, alive!  
Even with bruised broken wings I am not alone... And I know I don’t have to travel this journey alone.

Finding meaning in a life with chronic illness!

A few days back I chanced upon a write up addressed a very captivating thought that,  it is more important to live a meaningful life than to be happy.  

Modern brainwaves of happiness are based on self fulfillment, and amusingly I have felt that the more we pursue happiness the less happy we are, isnt it? That is why rather than aiming for a happy life, now I am aiming to live a meaningful life...yeah of course with this chronic illness. Actually all of us has a meaning in our life when we find a purpose.

 It forthwithly struck upon me how this idea can be connected with being chronically ill. When we are sick it can sometimes be difficult to be happy, but we can still find meaning.

Happiness without meaning characterizes a relatively shallow, self-absorbed or even selfish life, in which things go well, needs and desire are easily satisfied, and difficult or exhausting complexities are avoided.

Now when your life has been derailed by chronic illness you get used to things not going well and as expected ofcourse. Sickness involves a lot of entanglements and presents a lot of difficult situations.  I am sick, what can I do about it? So what is my purpose? How can I live a meaningful life with my changed circumstances?

Now when my life has turned upside down I have noted too often that many things, the society tells me, are important and that bring us happiness are no longer available to us. So I need to find a new purpose, an alternative meaning. Maybe it's my family, maybe it is advocacy for a disease, maybe it's raising awareness, creating art, counseling others etc..something!
But at the same time I need to make sure I don't get dragged down into thinking "what's the point of even existing because I am so completely useless 😁."

I won't lie, at times I've been dragged down into thinking that I'm totally useless to everyone😨.
However, now I need to not wallow in that thought. While I may not be useful in the ways society tells me I should be, I can find places to be of use and I can still find meaning in my life as well as that of others.

I have found meaning through my family, through my children, and through writing my thoughts down. Though I have ups and downs in my happiness, I know that I have a purpose and that I have a meaningful life, and that is more important to my self worth than anything else.

I am falling in love with this new life of mine! 😀

Feeling safe!

Feeling safe is something that some of us downplay a bit in life...don't u agree? At least, I always have. But without it, it's not easy to meet upto our expectations and realise our true potentials.
I feel if my world is filled with chaos and drama, is discombobulated and scattered from all sides; if there is nothing solid, connected to the earth...is grounded, then I would obviously falter emotionally...rather in every way, and struggle with feelings of being unsure about the way I am and the way the world is. 
    But with my foundation firm and solid, I can grow steadily and with confidence. I feel rooted deep and secure. I can move outside my home..maybe even travel someday...can explore in depth in complete awareness that I have a safe place to come back to.. home, a place where I am protected, where my best interests matter, and where I am supported by love and care. 

I am grateful for the solid foundation... my family and all the people and things in my life that make me feel safe.
U r my bedrock and a place to return to after adventuring in and exploring the world...with experiences which may include not jus happy moments but may also include wounds inflicted by the world that is insensitive in many ways to a person suffering from an invisible chronic illness and disability.
This strong grounded foundation support me as I grow.

Thank you for supporting and believing me and nurturing me into what I am today inspite of my health limitations!

Embrace change!

Embrace positive change in your life. "Wow! and how on earth am I supposed to do that?"... I used to wonder!

The word change always brought in a feel of resistance in me... may be because I very well know its not easy. Change means I would have to stretch out of my comfort zones and move forward in my life...which whether I like it or not, has changed.

I have realised living is a risk... so is happiness. U r bound to feel a little scared and uncomfortable sometimes, is it not?

N so I have stopped worrying about mistakes and failures, worrying about what I am giving up when I don’t even try😆.

I am going to stop worrying about the life I am not living and the opportunities I am forgoing, as I merely exist in the safety of my comfort zone.

I am giving myself permission to be one of the people who survived doing it wrong, who made mistakes, but recovered from them and grew into your strongest self. what say😎?

It feels great, so that’s what I wish for YOU too.

So basically I am embracing change and moving onward…coz...
☆ There’s plenty of life left to be lived.

It’s never too late to live a day that makes me proud. With every present moment God gives me a shot to make it great. Maybe today is the day! Being stuck in life is seriously a tragic waste. I can't sit stuck or idle even in my wheelchair..I keep trying new tricks..😆 whirling and moving around!

Honestly, I have stopped waiting for the  perfect time – I just simply start and stop whenever I want. So You can change or stay the same. You can make the best or the worst of today. It’s up to you, so make the best of it.
Like the wheelchair stunt I have introduced many things in my life that startle me...make me feel things I've never felt before😨.
With all these pain, never ending fatigue, and unexpected intermittent disabilities my mission is to live a life I am proud of.

☆Holding on to old pain is self-abuse.

My past has given me the strength and wisdom I have today, so m celebrating it. I am putting in all efforts to stop my memories of healthy past haunt me. Replaying my old life memories over and over in my head is a form of self-abuse... So I am trying to make peace with myself and my past.

The more I focus on old memories and future challenges due to my disabled state, the more I attract what I fear into my present happy moments. So that way I  become your own worst enemy.

☆ Moving on creates positive change.

CONFESSION!!! I was somewhere blaming everyone and everything for my present state, and kept cribbing “Poor me! Why do all these crappy things keep happening to me?” But then I realised in all these scenarios 'I' was the only common element. So that's the GOOD news, because it means I alone have the power to change things, or change the way I think about things.

That makes me powerful and has liberated me to a great extent!

So that's how I surrendered to change and embraced it!

Begining of my personal growth and evolution...is it not?😇

Doubting my abilities due to my disabilities.

People today view individuals with disabilities as different people based upon their appearances and behaviors. I find these kinds of viewpoints very derogative. I say this myself because people have doubted me and my own abilities.

For instance today is karwa chauth and this is my tenth year of fasting for my dear husband. And so like any other woman I too had plans to celebrate the festival. Being confined on my wheelchair I had requested my neighbours and maid to find someone to come home and apply the henna designs in my hands which is considered as an important ritual in this festival.

The first reaction I got from all the aforesaid people including the girls who came home for applying henna was one and the same...shocked!!! Disbelief that can l with these weak limbs, one and half eye, and energy barely to reach the washroom and breath, take this fast and complete the rituals? "Do you really want to do this? It's ok god can understand... how will you climb the stairs to the terrace and see the moon?. Can you do the puja which requires your arms which is partially paralysed? "
Well well well..here I am...started my fast already...hee hee. Yes the application of henna hurt me a lot to keep my arms in a particular position for longer than three minutes  (that's the time I can hold my arms up without hurting myself). I was exhausted after getting all the arrangements for the puja done.  But I am in it finally..sharing pics!

I have Myasthenia Gravis, an incurable disabling auto immune disorder alongwith various other disorders that hinders a normal life like an abled healthy person.
But I have promised myself I will never let either of them stop me from doing anything. To people who don’t know me well, I look just like any other person out there, a bright fat smiling woman. When people learn about my Myasthenia, they are shocked because I don’t look like I have a disability at all. To be compared to other individuals with disabilities is just insensitive since I am able to relate to their struggles in life.

The struggles I face in life are challenging, but I do not see myself being limited by my disabilities. Instead, now I have different abilities that play important roles within our communities and work environments. Though people doubt my abilities, I often prove them wrong about my capabilities.

There are some people who still doubt about my abilities. However, I take those negative thoughts and turn them into motivation and drive.

 I have learned that I have a different ability not a disability. That different ability of mine can make a difference wherever I will be in life. We all have different abilities and we should use them for what we are truly passionate for in life.

It took a lot of hard work (mentally and physically ) for me to finally believe that I make a difference in the world, no matter how little or big the difference is.

Lots of love to my adorable mom-in- law, my darling husband and beloved parents with whose blessings and support I can prove the world, doubting me, Wrong!

Done with..being afraid!

I am so done with being skeptical of tomorrow... tired of worrying about what might happen... brooding over how best I can I handle it if ever it happens..n so on.
Fear and all its armored horsemen...I am skidaddling them out of my system and replacing them with faith and trust in this universe and all of those magical things that I cannot foresee, or comprehend clearly in advance. 

I trust in the process of life and now I am at peace!