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.

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MG & Flare-Ups: Humbug

Dear readers, when flare-ups come around my life I feel like the MG Scrooge and I just want to say “Humbug”.

I’m not going to write about the specifics of our flare-ups because each one of us will have a different story to tell.  I’d like to humbly share my feelings about these awful flare-ups reaching out to others so we can make the best of it together.

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I hate to feel weak.

It makes me cranky, sad and defeated. The worse part is knowing that my body is doing this to me AGAIN. It feels like I’m punching myself in the face. Ouch!

I wanted to make this point because sometimes other people think it’s easy for me to remain positive and cheery all the time when the truth is I’m  not feeling like that at all.

However being the hopeless believer I am, after my initial “humbug” I come around and begin the healing process once more.  At this point I’m not that interested in healing my body, but healing my drenched spirit. Getting it together and moving forward once again.

Even though my family loves me tons and tries to do the best to support me, sometimes I need to attain comfort within me so I can deal with the issues each relapse brings. I can have them a million times and each one of them is going to be different except for the weakness which all of us know is the common denominator.

Reading and listening to music helps me tons. One of my favorite blogs to read ever is from Cathy Chester,  she battles multiple sclerosis and through her writings I feel better because I can relate to many things she brings to the table.

 

One of my favorite authors is Jane Austin, and in her book Emma, there’s a quote I absolutely love,

“It is well to have as many holds upon happiness as possible.”

For all of us happiness means different things, but one is common to all human race and it’s about finding solace and peace within our lives. Facing a chronic illness takes away so much, that it’s darn difficult not to become Scrooges.

I would always think about the negative whey before bringing any positives into context. Nowadays, I’m trying to retrain my brain, so positive thinking comes always first.

Many times I’ve smirked at myself, thinking, “Who am I kidding?”, but I always come back and try to just collect myself and keep on going.  It’s so easy to give up and so hard to keep my spirits up.

But, you know my dear friends, all of us are a work in progress.  For some it’s gonna be easy, for others not so.  However, let’s hang in there, because like Phil Collins sings, “It’s gonna be all right.”

 Don’t forget to find meaning and purpose in each day, and  to reach out to others. When we give it a try, it’s pretty amazing.

I invite you to come along on my quest for wellness not only of my body, but most importantly of my soul