Myasthenia and My Life of Sometimes
 

Well I just wanted to share a poem I wrote to explain to my family what MG is and my wife thought that I should put it up on the forums... I normally find it hard to share things like this but MG has forced me to rethink my boundries and this place has been helpful in reminding me that I'm not alone in this fight. Thanks W.Z.

Myasthenia and My Life of Sometimes

Since my diagnosis of Myasthenia Gravis I live a life of sometimes.

It is a neuromuscular disease, and “Grave muscle weakness” is what its name defines.

Sometimes I can’t hold my head up or move the muscles in my face to make a smile

When this happens I need to take some medicine and just rest awhile.

Sometimes I don’t feel like I’m sick at all, and I push harder than my body will allow.

This gets me into trouble and then I can’t move, breathe, or swallow.

Sometimes I get sick from the medicines which the doctors say will help me

Prednisone, Immune suppression, Mestinon, and infusion therapy.

Sometimes I get tired of being sick and tired,

on these days I lay in bed and wonder if I’ll get fired.

Sometimes I get angry when people say “But you look so healthy”

It’s only when I’m at my weakest that they’ll ever truly see.

“This illness has given me a new perspective” I once told my brother.

“A deeper meaning to the adage, never judge a book by its cover”

Because I feel that I always look like I’m mad, I tend to keep to myself when I’m weak

due to loss of muscle tone my face is flaccid and it’s sometimes hard to speak.

Sometimes I cry, and I can’t help but question why?

Why did I loose the ability to do, when I’ve always been so driven?

Why do others abuse themselves, and not live the life they’ve been given?

When riding my bike was the one way I dealt with stress,

Why did I loose that, and now have no way to decompress.

Sometimes I smile inside at the dinner table when we pray

and my kids ask God “Please make Daddy feel better today.”

When I hear this, I sometimes get sad and then this sadness worsens,

because they shouldn’t have to worry, and I begin to feel like a burden.

Like when the kids need baths and the house is a mess

and I am laying in bed experiencing respiratory distress.

So i've learned to make the most of the good days when I feel strong

And I go to bed early on the bad ones so they aren’t so long.

I wish I didn’t have to experience these things, and in some ways I am still learning to cope.

I am always thankful for my life and family, and sometimes I have hope.

Aw3sk3r
 

:hug:How BEAUTIFUL! You hit the nail on the head! This brought tears to my eyes............

Thank you for this wonderful gift!

Love.
Erin:hug:

WZ - - Fantastic! - -Thanks for sharing!!

Thank you!
 

You have expressed exactly what I feel. Thanks for sharing.

Thank you for sharing your poem.:)

Myasthenia and my life sometimes
 

Wow!!! This is an incredible piece of writing! You nailed it
Kendra

Thank you for sharing your beautiful poem.;)

Hugs,
Pat

Beautiful words, full and true.

an entire text-book on MG could not explain it better.

I think this should be a must for medical students and neurology residents.

short, clear and to the point.

explaining so well what this illness really is.

alice

Thank you so much everyone... I know that you all understand what this forum means to people who suffer with this disease... and to hear these words means even more to me!:grouphug: