EDS & Hypermobility Spectrum | Be who you are meant to be.. Never let anyone silence you

Can’t Shake This Feeling

Exert from Chapter One in my Book,

By JD Author, Reporter-Journalist

There are days when even in a crowd of people I feel that I am alone. I see people talking around me, they notice me, yet I feel as if I am a million miles away, going through the motions, yet I just exist. I am not sure if it is the feeling of inadequacy, and rejection I have felt over the years for having opinions that are looked upon as inappropriate or a bit twisted that make me feel as if I am living in a world that I don’t belong. Sometimes I move slower than others, and some days I can keep up. Perhaps I am just more self conscious as to my limitations at times.

It is like living in a box and wondering should I hop out and try to be a part of the crowd, or stay in my comfort zone. I ask myself often is it because I think strangely? Or am I just a freak of nature with no explanation? Either way, some days, I think I judge my own sanity or insanity harshly. But how does one deal with the outside world when they feel they do not fit in?

I often meet others with medical conditions as mine, and hear them say they feel the same way, yet as an outsider, their world appears perfect. They have everything they desire going for them, or have their dreams on hold, but they have a piece of that dream existing as a part of them fulfilling their desires. Why can my world not appear so simplistic? Why can I not have what my heart and soul longs for? Am I destined to always be a seeker and never find? Or will that realm of life always belong to another?

Why can what matters the most to me not seem to find it’s belonging within the walls of my world?

I seem but a shadow none dare view.

A reflection of a shell, an existence unexplained

My soul calls out to be noticed Yet cannot be heard,

I hide that I feel pained.

I crawl so often, back into my virtual box

Seeking the comfort I know

For if I let no one in and I don’t come out

My pain of existence does not show.

There are moments when I emerge

Breaking free of the “cardboard walls”

To hope for understanding, and acceptance

Yet my voice falls on hallowed halls.

I let myself fall victim often to desire

For that instant, I feel it as much

Then find myself again exposed, vulnerable

And but a whim for their temporary pleasure as such.

I let down my guard, bare my soul

In hopes for something I seek to be true,

To find it but a fallacy, clearly defined

The recipient another venue.

Why do I not just stay well guarded?

Building my walls true firm for me

That I cannot escape to harm my soul

On the shallowness of others that be?

One day I shall emerge and find my place

I shall rise and not look back to see

What was or did once hold me abreast

Will be walking along hand in hand with me.

Sometimes it feels as if when I look up in the clear sky at night and see a star and wish upon it, that the star belongs to someone else and they are the ones always getting what the heck I am wishing for and I am just lost in the cosmos.

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Not in My World!!

My MS Journey

Exert from Chapter Four in my Book,

By JD Author, Reporter-Journalist

Have you ever heard stories of people having things happen to them, and thought to yourself, “that would never happen to me?” “Not in my world.” I had thought it many times in my younger adult years, but then reality sets in and we come to the realization that we are not invincible. We are not exempt from whatever God has planned for our lives, whether good, bad or ugly, they happen.

A few months after my brain and spinal surgery, I was managing but wondering why my recovery was taking far longer than anticipated and new symptoms were erupting. Within weeks things began spiraling downward fast, and I was sicker than I had been prior to surgery. Back to the doctors for repeated testing and probing I went.

While awaiting the results of months of testing, the downward spiral began to progress faster, and I was finding myself more confined and limited in what I could do. I was either always too dizzy, having seizures, migraines, tremors, loss of coordination, and my immune system was treating my body as if I had been invaded by an alien, and shot craps on me repeatedly. This was really starting to suck.

Now was not the time for my health to give way. I just couldn’t be sick. I had two kids getting ready to graduate from high school, one was getting ready to join the military as soon as he graduated and two heading into their sophomore year of high school. All of them busy in sports and extra-curricular activities, and I as a mom, just had to be there to show my support and cheer. Yet I barely had the energy or ability to drag my butt out of bed to drive them to school, cook and do laundry. Good thing in their younger years they did learn domestic skills and even better there was a Wendy’s®, McDonalds®, Pizza Hut® and Subway® all within a mile of the house.

Some days I felt like a jackhammer had just chiseled away at my will. I was often wondering, since when do medical conditions come in two for one package deals? But ALAS, I am a real winner! I have THREE. I began to wonder if the insurance coverage that I had did offer special discounts for specific services, so were they in cahoots with karma, to give me this multi-pack special diagnosis deal? JACKPOT! Well at least I guess it had to be better than not having any answers, and not knowing what was the cause of my medical problems. Once again I was then scheduled to see a few specialists and begin a treatment plan.

I am a person not truly religion specific yet a firm believer in faith and that God and Karma have a reason for everything in life. How we choose to use them whether good, bad or ugly determines the benefit or downfall of every situation and life event. Whether it is short lived or permanent in our current existence it can happen.

I call them blessings in disguise, because whether easy paths or rough terrain, I learn and grow from them. Even on days when I feel I am held under duress by a body that is in conflict with my plans for fun.

I battled many feelings of anger and resentment and I was not sure at whom it was to be directed. I just knew I was angry. I had so many things I wanted to achieve, do accomplish, and I could not be tied down with a medical condition that set limitations! This just could not happen to me, not in my world! Amazing how angry we can get and lash out at those around us when we are searching for answers as to why we of all people were chosen to have this happen to us. We hear about other people experiencing it, but think silently to ourselves that we are infallible and that it can’t happen to me.

Then reality once again rears its ugly brow and snaps one back into the zone, forcing you to sort out everything and start searching for the life lesson in it all. Talk about a good bitch slapping! Life was giving me a good one, and I knew it was time to wake up and start paying attention to what was to be gained, learned and experienced and use it to grow as an individual.

Have you every truly wondered,

Why life doesn’t always seem fair?

When you’re hoping for a rainbow,

Why you find clouds of pain or despair?

You wonder to yourself,

Why this would be happening to you.

Is this just a bad nightmare?

Really it cannot be true?

You seek answers through the anger,

You feel the emotional burden of pain.

Yet still remaining clueless,

In the long run what you might gain.

Close your eyes and listen

To the words you can hear said.

The message spoken clearly,

It’s not just random voices in the head.

There are lessons to be learned,

Refocus often if you can.

This is destiny and you must grow,

It’s all part of a bigger plan.

For each challenge that seems dreary,

Will eventually open up your eyes.

Then you can truly understand,

There is a Blessing in Disguise.

Be who you are meant to be.. Never let anyone silence you

Category Archives: EDS & Hypermobility Spectrum

Can’t Shake This Feeling

Not In My World

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