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 joyride. 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.
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 !”
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.