Blogger Recognition Award !!

I am super excited and very happy to share the news that I have been recognized in this wonderful blogging community. It is very encouraging and motivating to have received this award.

Thank you so much, Kristin from www.thiswifeandmommylife.com for nominating me for this BLOGGER RECOGNITION AWARD. Kristin writes a very realistic blog about motherhood and marriage. 

blogger-recognition-award-logo-e1500488046118

Since I have received this award I am hereby nominating fellow bloggers whose blogs are quite helpful to check out. I admit that the number of blogs nominated by me is not much but I assure the readers that all the nominees are truly very well deserved.

So here are the rules:

Blogger Recognition Award Rules

How did I start my Blog:

My blog is a child of inspiration given by my most beloved persons and I cannot thank them enough for this; because, over the short span of time – writing posts has become a coping mechanism to anxiety for me. You will understand what I mean if you read my story An Invisible Disability. It is the aim of my life today to de-stigmatize chronic illness due to some of the worst experiences of my life. I do not wish ignorance to put anybody in the phases that I went through because of the wide spread lack of awareness.  

My advice to new bloggers:

GET INVOLVED: Consider your posts as a piece of writing that you yourself truly believe in. It will motivate you to research more about the topic that you are writing on. It is very important to be well versed with what you are writing. 

BE RESPONSIVE: You are connected with your readers through your posts. Hence, it is of utmost importance to respond to the comments that you receive. Also, add a Contact Me page or Details where you can be reached by your readers to clarify any doubts that they have regarding the information mentioned in your posts.

I would like to nominate:

  1. Ankita from ankznrn.blogspot.in.Your blog is so versatile. I appreciate you not being confined to a particular niche. You have come out of your comfort zone or rather made every zone comfortable to you. Congratulations !! Your blog is quite interesting and worth following.
  2. Mayuree from https://ainutalkies.wordpress.com/.Being a newbie your have taken up quite controversial but important topics. I can relate to the social pressure regarding these issues in India. I am happy you chose to write about things like IFV and Adoption. It will help people to widen their outlook. It is something which everyone can benefit from. Your posts encourage and inspire the readers.
  3.  Kyla from https://www.thekylaeffect.com/ You make me want to travel to all those wonderful places. I loved your DIY section as well. Wonderful outlook at how different things can be put to use.
  4.  John from The Bipolar Battle You are doing a great job. Kudos to you. There is a lot of stigma associated with these types of disorders. People don’t understand the depth of it and rather than simplifying the suffurer’s lives, they make it more and more difficult for the afflicted to live. You are helping them achieve what they deserve. I loved your blog !!  
  5. Blackellis from https://blackellis.ro/ You have a very strong content. The quality of your posts is consistent. I enjoyed reading your posts. I would love to try out some of the awesome tips recommended in your posts. I was really impressed by the amount variety you have on your blog posts.

Congratulations to all of you !!

I would love to read your posts about receipt of this encouraging Blogger Recognition Award. Please drop the link below so I can check it out. All the best and enjoy nominating others.

 

Advertisements

✌All I have is HOPE 😇

HOPE – a word that has different personalised meaning for different people. People say “Nothing is lost if Wealth is lost but everything is lost if HOPE is lost.” Each of us have a HOPE for a brighter future.

 I desire understandably to have those whom I love or know, care enough to take the time to

1) Listen and be pro-active to find about my life, and then 

2) Invest and pour after understanding.

Everyones life is unique. Mine is a bit difficult due to health issues and limitations. Read my story at 

https://sachisha.wordpress.com/2017/05/17/a-walk-through-my-life/?preview=true

My life is different.. very different, 

BUT IT STILL MATTERS !! 

At some point, my worth cannot be caught up in the conditioned fray that I must prove the validity of my struggle in order to be loved and accepted. Our lives are not contingent on one another. 

 So it is OK if I walk away  from those who do not pursue a true understanding of who I am and what I face. Because frankly speaking I deserve a much better life than MG. Currently, I do not have an answer to when will I be cured neither will I ever have. 

All I have is HOPE !! 

Courtesy: Myasthenia Gravis Unmasked 

I hope for the best but always be prepared for the worst !! 

A Walk Through My Life

hope-1

Someone asked me why I was such a downer about Myasthenia Gravis. It was stated that I over did the symptoms and scared people for no reason. I have given this a lot of thought. Would it be any help to others if I wrote about my days of struggle?

“Oh, I woke up and the sun is shining and I took some pills !!”

How in the world can anyone get the word out about MG and the real Life I have with it? The truth is, living with MG sucks and the drugs that help me live with this rare disease suck even more. It’s a devastating disease. I was petrified of losing my independence.

MG is no joy ride. I won’t complain about my life because I’m the happiest I’ve ever been. It’s a testimony of endurance. I consider myself lucky as I’m still here… alive and breathing.. and with my family.. even though I struggle every day. My heart is still beating and I can still breathe.

Sometimes we just have to live in the moment. Take each day a step at a time… things don’t get easier as such. ..You just learn to deal with them in a completely different way !!

I’m not a happy camper when I’m sick from the drugs, the weight gain, and puffy body. This disease IS scary. MG has a mind of its own and you never know where it will take you. But as they say – The best future is forgotten past !!

I began this journey feeling like the only person in this world that had to live with droopy eyes and double vision. I felt guilty for lying on the couch instead of working, cooking or folding clothes. But now I have found people who know exactly how I feel and what I go thorough to survive. Because they too face the similar situation.

“You look Good, has your illness improved”, I am sick of hearing these words from people especially the ones who know me but do not take the time to listen when I try to explain the condition. Too much ignorance out there… and I must keep people around me aware of what MG presents, to keep myself calm and not get flared up at people’s comments . Life is not peaches and cream !!

Just getting dressed in the mornings is sometimes a struggle and I need a reminder to myself to continue being brave… one real big weakness is eating and swallowing. I cannot go outside when the temperature is in excess. A number of times I have been crossing a road and a car appears from nowhere. I try to walk faster but my legs seem to slow down. I can no longer spend more than an hour or two in the market shopping goodies. Some days i hurt all over… i ACHE because my muscles don’t support my body and i have HEADACHES because my eyes won’t focus and there is the feeling of total FATIGUE that robs me of the ability to do the most basic of the tasks.

Some days when I am feeling great I push myself. If I do too much I pay for it that evening and night, my legs cramp up and I have to ease them. Sometimes people think that I’m lazy, but it’s so much more to it than that. I don’t feel like cleaning house all the time, and yes I do feel better when it is clean, but I don’t always have the energy to do it… very frustrating… I get tired easily and mid-days are most tough.

Myasthenia is a messed up disease. My biggest problems are speech and swallowing. It is not fun at all, not being able to talk and eat half the time ! My mind is always racing with ideas, things that I want to do, places that I wish to visit but instead my body say’s NO… I feel trapped in my own body.

MG can be very isolating making one feel like a crumpled piece of a useless paper. This disease can take you to the darkest places if you let it. It scares every bit of me. I have lost everything I ever worked so hard for. For a time I question my faith, I questioned God. It took time for me to see that all of this materialistic stuff doesn’t matter. I may walk and talk drunk at times, I lay down a lot, and this is my life with MG. Am I too much of a downer? Maybe.

The worst part of this disease for me was not being able to smile or have a normal vision. Writing about your life, good or bad is courageous. Yes, I can seem like a downer if you don’t understand. Scary? Absolutely !! Will I change how I write about Myasthenia Gravis? Never !!

I tend to isolate myself when I have flare ups because people really don’t understand. One day I feel like running a marathon & look like a champion. The next day I may be feeling weak and not solid like a jello and look like a limp dish rag. So it is hard for someone to understand or even believe that MG flare ups can come so sudden. I get tired of trying to explain to people that I’m tired & I’m weak. Actually.. I am tired of being sick and sick of being tired.

Other than the MG life is good. Trying to hold on to life with MG is the hardest part of this disease. When I am too sick to move I have nothing to do but remember the days when I could run free. I may not look the way I did a year ago but that really doesn’t change who I am inside !!

It takes time to understand MG. There are times when I think I am not going to make it, and then I spring back to life.. just to fall again. It is truly unpredictable !!

It is hard to always stay positive. Sometimes I have to give in to the sadness, but I remind myself that emotions do pass… This phase too shall pass. I can pull myself together and lift my head up a little higher tomorrow. It’s okay to be mad and dislike what is happening. I keep reminding myself that I have so much in life to do yet. The power of support is amazing and I am thankful to everyone who have supported me.

Happiness is just around the corner waiting for me and I am ready to embrace it…”Never give up on life. More importantly, never give up on yourself.”

Sadly, life throws some pretty rough curves. However, “Every day is a new day.” With each new day we have the opportunity for a new beginning. We can choose to make it a good day, or choose to wallow in self-pity, and make it a bad day. Each of us has our own demons to fight. We can live life to the fullest of our abilities with dignity and grace. When we can’t see the forest for the trees because we are focused on for the sky to fall, we miss all the beauty of life behind the trees. “Life was made to live” so, “live it !”

3e76cd1d54c40aedcf2c46fdfc611241

On a last note. “The sun is shining, I did take my pills and it is a happy day !!”

I love my husband and my family. And it is for them today, that I sustain and endure this plight. My family is my strength. There is HOPE and I wait for a better phase ahead.

Mother’s Day Gift 😘

Every year children ask their mother the same question. After thinking about it, she decided she would finally give them the answer:

“What do I want for Mother’s Day? I want you. I want you to keep coming around, I want you to bring your happiness around, I want you to ask me questions, ask my advice, tell me your problems, ask for my opinion, ask for my help. I want you to come over and rant about your problems, rant about life, rant about just whatever. I want you to continue sharing your life with me. Come over and laugh with me. Hearing you laugh is the best music to my ears.

I spent the better part of my life raising you the best way I knew how. Now, give me a chance to sit back and admire my work. Raid the refrigerator to look out for your favourite delicacy. Surf through my shopping bags. Take me through the never-ending family photoshoots. In fact, I wouldn’t want it any other way. I want you to spend your money making a better life for you and your family, I have the things I need. I don’t want any materialistic gift. Gift me moments. I want to see you happy and healthy. When you ask me what I want for Mother’s Day, I say “nothing” because you’ve already been giving me my gift all year. It is the time spent with you. My biggest gift is you. I want you..”

That is all a mother really wants. Thank you mom for making me independent and to take responsibility of my actions. Thank you for giving me unconditional love without expecting anything in return. Thank you for being by my side when I cried at nights… when I am not well…

I just can’t thank you enough. 

I love you !!

One of the worst mornings with MG

You probably have never heard of Myasthenia Gravis or MG. But I have a story to tell, and I believe it is important to be heard to raise awareness. It is about this morning, which is typical of most mornings for me, as I and many others like me who live with MG.

It is 8:45 in the morning and the sunbeams pierce the blinds on my bedroom window painting a shadow scene on the far wall, brought to motion by the gentle fall breeze outside as it nudges the foliage from a night’s slumber, awakening it also to begin another in a series of beautiful days. My eyelids begin their morning ritual of trying to part from each other due to ptosis or the drooping of eyelids because I do not have strength to open eyes and lift the eyelids. Ever wondered how we take such tiny unnoticed but relevant events for granted.  How will they work today, better, worse, at all? Well, they are coming open, but my body feels melded to my mattress as I roll over to reach my medicines carefully positioned the night before on the stand beside my bed. I find my withered arm so weakened and frail that I am unable to reach for my pills. Not quite unfamiliar with this situation as one of my daily nuances, I move my hand into my pillowcase where I keep a spare dose in a small bag. I clutch the pills as best I can. The medicine in hand, the ritual of swallowing now confronts me, and this particular day although no saliva is dripping from the corners of my mouth because at its worst days, I sometimes cannot swallow my own saliva, my attempts to swallow require all the ingenuity and patience I can muster, still knowing that the pills will not go down. Hence, I place the pills beneath my tongue sometimes. Tolerating the bitterness and the burning as they slowly dissolve and waiting for their sustenance to enter my circulation and pass quickly to my muscles. It is as if the gentle breeze that moved the leaves now slowly puts my body into motion. It takes a good thirty minutes but I am now able to persuade my still begrudging legs into position so my feet will touch the floor. It is 9:15 now, and I am grasping for support since my leg muscles are affected and fragile as my day continues.

Have you ever thought of how you feel at the end of a long and hard day at work, maybe your shoulders heavy, arms hard to raise, standing upright may be a struggle, and muscles aching and fatigued? Take that feeling and add a 90-pound backpack to your load for the day. If you have not thought of it, think of it now, because it will help you understand. That is how I feel most of the time. Not as I end my day, but as I start it. It’s 10:15 a.m. It has been an hour and a half and the medicine’s effect has peaked, but that represents the apex of my day, for until the next day’s sunbeam begins its dance on that far wall, this represents the best that I will be doing during that period.

The toothbrush is now heavy in my hand, the jaw quickly fatigues from holding open my mouth, and a cough is stirred when a slight miscue in my swallowing mechanisms allows some of the toothpaste to enter my body since the muscles of the throat are weakened too. A cough itself fatiguing my respiratory muscles initiates an extended period of air hunger. I terminate the battle with the toothbrush. My hair is a mess, but cannot entangle it – too heavy a task for the hands and arms- and I can barely let my head down low enough for my hand to even guide the comb to put my hair in place. I quickly choose to pull off a scarf over my hair. To hide the mismanaged hair. Looking into the mirror, I see – oh well, two heads and four ears. The double vision is bad today, totally at its peak.  This leaves me with no strength and energy to bathe myself. The pirate-like patch I place on one eye will fix my double vision for now. But not long, enough before the eye in use becomes strained only for the patch to be changed to the other eye – positioning it to be next in the queue to get strained.

13087867_1239475942749136_4772229695078421578_n.jpg

The clock shows 11:00 a.m. and my breathing now coming easier. I wasn’t able to get enough sleep at night due to heavy struggled breathing due to the weakened diaphragm. There is nothing wrong with my heart or lungs. Still the shallow breaths not enough to supply required oxygen to the body. I now find myself able to get the other needed medications – the immunosuppressants and the immunomodulators to keep at bay the antibodies against my own muscles, the calcium supplement to keep the cortisone from robbing calcium from my bones, the muscle strengthener that helps the muscles work better, the antispasmodic to keep the muscle-strengthening pill from cramping my stomach and bowels, and what not. Sometimes I wonder if the disease or the treatment is more difficult to bear with. In all, over 10 pills a day. What if it never gets better? Suddenly the anxiety and uncertainty start to seep in. Thank God for a wonderful family !!

Since I’m bent toward musing, during my struggle a recurring thought appears – there’s a HOPE out there, and I know it. Cutting-edge research will come to fruition any time now. I have heard about miracles happening. When will I get it?

It is 11:30 a.m. now and I have made it to the kitchen. Would you like to join me for a brunch, and of course, hear the rest of the story?

-ANONYMOUS

P.S. : This post is similar to one of the articles titled “Living With Myasthenia gravis”, which was published on 9th of Sep 2014, on a support group – Myasthenia gravis society . I do not have any idea about the author. But really wanted to share the details of my own story with the readers to spread awareness about MG.

Why there is such a great lack of awareness about MG

I just read an article that mentioned MG. It did not say a lot but it did confirm the difficulty in making the diagnosis. It said that most of the neurologists have rarely seen anyone with it. It also stated that the standard “tensilon test” is unreliable in Anti-MuSk Ab+ MG patients. In most of these cases the MG antibodies are not present or they dont show up in currently available tests. It is commonly misdiagnosed and is reported to only occur in a few like say a 10 people per million.

Now this explains why we face so much lack of awareness about it and people are just not ready to accept and believe even if there is no greater truth than it. Support the ones with such kind of conditions. It is not going to change the bitter truth of their suffering if the society chooses to “NOT  ACCEPT” it’s existence. You believe it or not it is for real !!

IMG_20170319_015259_921

Do not make life more difficult for them they are already having a hard time. By not accepting you are increasing the already prevalent social stigma associated with such conditions.

Be compassionate.
Be considerate.

An Invisible Disability

How do you explain to someone how Myasthenia Gravis (MG) makes you feel?

It makes me tired but not the kind of tiredness you feel after a long day at work. It’s an extreme fatigue feeling that can leaves me with arms which feel like rubber bands or legs that are like noodles. My neck will ache from trying to keep my head upright and the droopy eyes I hide with sun glasses at odd times of the day or an eye patch most of the days. Some days I will choke on my own spit and I cant smile because my facial muscles won’t contract. My family knows to let me be alone for sometime because I need to be with myself. This is what makes me feel miserable and vulnerable having nothing else to think of but keep pondering over a thought of helplessness. But I never loose hope. I sweat from the medicines I take so even on the most cold days you will find me outside fanning myself. I’ve lived with this for quite a long time, that the symptoms are a second nature to me now.

I know how to read my body and the dangers that MG could cause me but still I have days where I get scared, lots of them. Mostly the nights to spend with breathless chocking sensations and heat flushes. There are times I can’t see what you do and I can’t speak what you expect me to. But that doesn’t imply I don’t want to talk or meet you. I might just not be able to do so….

Today is so beautiful and warm but I don’t dare sunbathe because for some reason this makes my symptoms flare. That’s okay, I don’t feel I’m missing out. I cant sing my heart out or cant dance madly to my favorite tunes. I can’t stress out on what I don’t have or what I can’t do or else I’d go crazy counting the innumerable things. Autoimmunity has made me to sacrifice a lot but i cant let it do this to me anymore. I’m grateful for everyday I see and for my family and friends around me. I still hold on to the hope for a cure and for a better future. For all of you who have MG, we have to fight a little harder for today if the day seems brighter at this moment , it definitely might not be the same the very next hour !!

It is complicated to explain others what it feels to survive and fight this invisible disability. Yes MG is a neuro-muscular autoimmune crap but the word “NEURO” doesnt make me a lunatic or a psychopath or an insane person with an unsound mind. The person thinking so is the biggest lunatic. Had you been in my shoes you would realize what this walk means. It gets difficult to get through it every passing moment. But it isnt impossible with the support of my lovely friends and a caring family. Thank you all n love you lots !! Will never be able to explain you what having you all around means to me. And those who donot understand what MG presents to us…rather than commenting on someone with chronic illnesses or being judgemental for their “not so normal” life, or accusing them for being over sensitive and emotional – just thank God that you or your loved ones have not received this unexpected surprise gift from God….

A big salute to all the Warriors fighting MG and other chronic illness !!
You are the courage personified 😊 You are the embodiment of HOPE

Choose to keep going and choose to spread awareness.

Love,
Sonz