Me Time With MG

This morning my daughter told me, “I need some “me time” so I’m taking a walk in the park, got some coffee and than I can face the anxieties my life has.”

Myasthenia Gravis makes us refocus on things in a different way.  Our “Me Time” has to evolve into something  we can do.   The important thing is never giving up trying to reshape our life.

Let’s say I can’t jog in the morning, but maybe I can walk.

Let’s say today I can’t walk without help, than I’ll sit in a nice comfortable chair to appreciate the little things in life and the wonderful sounds we can hear in a park.

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Let’s say that today I can’t sit straight for long periods of time, than let me sit up on my bed and listen to my favorite tunes or read a magazine or book.

Myasthenia brings good and bad days and we can’t just wish the bad ones away.

I believe we can do most of the things we love in life, just with a little twist to them.

Negativism  brings nothing good, it’s much better to stay on the positive side of things.

Like Mother Teresa once said, “Be happy in the moment, that’s enough.  Each moment is all we need, not more.”

So my dear friends, rekindle your love for “me time” we still have the abilities inside of us to live our lives the best we can. The only difference is that we have to reshape things to fit our realities.  It’s not hard after a while, you just need to believe in yourself.

Thanks for keeping me company in this path we call Myasthenia Gravis.  It’s not about the journey, but about all we can learn each step of the way.

 

 

 

 

 

 

 

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Life’s Manuscript

Dear readers, I like writing my blog mainly because I get to share my feelings with others, but most importantly with myself.

Well, probably your asking yourself, “Why?”, “Isn’t the point of having a blog, trying to get noticed out on the vast horizons of the world wide web?”.

Everyone seems to be craving getting their fifteen seconds of fame.

For me sharing my thoughts on life, wellness, and so much more people who have MG have to deal with is important, but finding my voice is as equal  or even more important.

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A voice that is often silenced the moment you say something that’s not in the manuscript. I don’t know if you get it or not, however for me it is a reality that hits home more often then I liked to admit.

The moment that I try to say something like,

“Life stinks.” (Believe me it truly does sometimes.).  Someone in my family will jump to begin saying, “You have so much.”

Do I???

These are the moments I miss my daughter the most.  She always says,

“Mamita, it’s okay if you think life stinks, you have a right to feel anything you want. Things don’t have to be okay.”

That’s part of dealing with all of this.

Having such a debilitating disease takes away so much, it’s overwhelming. Specially when you see everyone moving forward and you’re just sitting there watching as a bystander.

You know, I have an older sibling  who I admire very much.  We overcame a difficult childhood as best as we could.

I have mixed feeling each time I have to face the fact that he was able to complete a thirty year career in the Army overcoming a lot of things that happened to him along the way, and now as frosting on the cake, he’s about to begin a new career facing his retirement. He has a motorcycle he rides during the weekends and he seems to be happy most of the time.  In a nutshell, he’s free.

I miss my career so much it hurts sometimes.  Today the feeling of despair just creeped up on me and for just a second I felt without a purpose in life.

I thought , “Is this what people who feel like dyeing experience?

My life seems to be lived through a loophole, seeing only what others want me to see and even more dangerous pretending that everything is fine.

Nonetheless,  I snapped right out of it.

I still feel sad, but part of being well is our capacity to be sad.  As the day came to an end, I got my gardening gloves and this and that as I listened to Barbara Streisand sing about love, sorrow,  and life.  They say pets sense when something is wrong, so needless to say, my dog sat near me as I tweaked a bush or two, and got a longer pat than usual.

So my friends it’s fine to yell once in a while, even if it is to yourself, that life does suck for some more than others sometimes and it’s perfectly normal to feel bad about it and yourself, even if we snap out of it in a second or two.

See you around and remember to be kind to yourself and to others.

The Lonely Path of Depression

Dear readers,  most of us don’t want to talk about “depression” or whatever name you or me want to call it.  It’s a delicate matter, a Pandora box, the white elephant in the room or the conversation.  Even if these are our “ifs” we don’t want to deal with them, or if we do we usually procrastinate it for a bit more, or at least that’s what I do.

When my daughter came in May from McCormick Seminary in Chicago to take care of me in the hospital she brought the subject up… more or less like this,

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“Mom, you should consider therapy to manage stress…”

She brought it up with the word “stress” because she thought I would be more receptive.

To which I replied  with a startled  look….

“I’ve been managing quite well for the past ten years.” (Whoa…. where did that come from)

To which she replied with her usual “Uhummm”, (keep in mind that she’s going to be a minister), she uses that little sound to gain some time before recollecting her thoughts for a good comeback.

The thing is that we were back and forth for a while, but she suddenly dropped the topic.  Just to bring it back when I got discharged from the hospital.  And my dear friends, she took me where she wanted and I ended up making that phone call.  I do need therapy.

Admitting it to myself is the hard part.

 

Depression like any other mental health issue stands in a lonely place and going there and facing it isn’t easy.

Even if I do want to think I’m happy most of the time, the truth is I’m not always  happy about my life.

My Myasthenia took away one of the things I loved about my life, my teaching career.

When I graduated, I told my husband  before my first day as a teacher,

“Am I blessed or what??? I get to do what I love the most and I get paid for it. I could do this for free.”

Little did I know that my teaching career wouldn’t last ten years.

Each year when the school year is about to begin is when I feel uneasy and pretty much sad.  My heart just skips a beat and I would give anything in this world just to get ready to go to work.

My husband and my neurologist try to make me feel better, telling me this or that, but deep inside it hurts really bad.

Now after all these years, I’m going to give therapy a try.

And this my dear friends, is only one aspect of the emotional ups and downs I go through each day, each week, each month and each year.

I have to cope with so many things and I’m sure all of you have to as well.

Not dealing with our inner turmoil hurts more than it heals, even if I don’t deal with it or bury it so deep within my soul feeling for a nanosecond it’s not there.  I can’t wish it away, it’s going to stay there until I deal with it.   It’s like a cancer cells that repairs all that’s close to it, just to get stronger and destroy everything that’s in its path.

The good that come out of all this is that I can’t give up and neither can you.  We have to stand strong and just put one step in front of the other in this day to day battle,  never loosing hope and gripping hard to our faith.

Thanks for being part of my road to wellness, see you around the corner.