Imagine a hard-working, active woman, a mom who took care of her kids, husband and home with such great ease that people used to be in awe seeing her juggling skills and balancing of home and office needs, who liked to dance (zumba elevated her spirits) and do yoga amongst the flowers she had planted -gardening which was dear to her- is given a sudden blow on her face with a disease that makes it difficult to see, walk or even talk.
This is the reality of Myasthenia Gravis. It weakens and paralyses the muscles to such an extent point that no longer things can be done at our wish.
Myasthenia gravis is a chronic condition that causes muscles to tire and weaken easily. For example, if you have myasthenia gravis, you may notice that while having your food normally, all of a sudden your jaw muscles become tired and weak, interfering with your ability to chew food. After you have rested for a little while, the muscles may become strong again, allowing you to continue eating. If it decides to weaken the tongue then the either we have slurred speech or just go mute.
This waxing-and-waning weakness of muscles, worsening with use and improving with rest, gets me sometimes on the wheelchair, sometimes on crutches and sometimes to walk on my own with no support! This has therefore allowed many to label me as an attention junkie, a faker, Making this up for my own sick pleasure!
So this rare disorder has the special privilege of moving around the body throughout the day, choosing to weaken different muscle groups at different times.It is disabling, but never the same disability twice.
The effected muscles then feel as if strapped to invisible weights, thereby making movement almost impossible. So the longer I walk or stand, the invisible heaviness increases to such extent that I am forced to crawl...no I am not joking..i have seen tears well up in the eyes of my family when I have had to crawl up from the front room to the bedroom! So now I have my companions..my wheelchair and my crutches.
The unexplained fatigue and muscle weakness, which is a hallmark of this particular disease can at times be so bad that at times when I am out of my bed on my own, I feel so unsafe and vulnerable as well as unsteady that I need somebody with me to hold onto, due to the fear of falling over..anytime without any warning..just like what happened to me a couple of days before.
As I woke up in the morning, I could not get out of bed, as my right leg had gone very weak..almost numb and lifeless..that I was not able to stand, leave alone even walk and therefore had to remain in bed until my legs gain their strength back.
It did ..as it happens when my arms or tongue or neck is effected.. after half an hour or so. This, my friends is unfortunately, not uncommon.
So suddenly finding my legs or arms or tongue or neck being uncooperative and too weak to do their job can happen at any time of the day. I have lost count on how many times my legs have given away and I have found myself ebbing down on the floor... declaring the MG induced weakness as a winner of the skirmish.
How could I not mention the aspect of Pain and Fatigue which are omnipresent... though most of the time the pain is bearable, but there are intermittent periods of time when the pain goes to an intolerable extent.
Presently my nuero and his medications and the plasma exchange (through IVIG) have managed to keep my MG from becoming less aggressive enough so as to allow me to enjoy my life to some extent if not as i had before it had attacked my cells.
The severity of it does vary from day-to-day, sometimes minute by minute. My Life has become increasingly unpredictable. Small things, big impact on my independence.. as if am alive wrapped in a cling wrap! I know MG which is declared as chronic meaning incurable..is here to stay. And so am I.
The other sad part of my ailment was I gradually noticed that many of my loved ones and friends drifted away from me and many misunderstood me too...with comments- "Don’t talk about your illness anymore. We are tired of hearing about it. We don’t need to be reminded. We understand, now move on.”
No, you don’t..there was no way anybody could understand what was happening to me since even I dint know what the hell was happening to me..so how can I expect others to do the same? I know I cannot control the way people view or think about me. But my ailment made me realize my strength and choice to react and feel about such situations.
Life with chronic illness has been messy and devastating, but I strongly believe that there are still plenty of silver linings to be found in my life with the aid of the amazing support and love that my family and friends shower me with, every single day. New people like angels have meandered in my life, when I least expected it, and they have bestowed many life lessons upon me making me stronger and positive than ever!
I have learnt to loosen my clutches over my life and have kept myself open to be found by love!
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