living with MS | 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.

Quality vs Quantity

Exert from my Book,

By JD

Author, Reporter-Journalist

When dealing with health issues that are of a long term nature or are considered irreversible or non curable, we become familiar with the meaning of quality of life verses the quantity of time in our life spans. What we as individuals place priority on does not usually match what is of importance to most in the medical profession. I discovered this to be very much a reality when I was first diagnosed with MS. It seemed as if I were in their eyes another scientific experiment that they could base longevity ratios and statistics on if they could just convince me to follow their “remedies” for living with my diagnosis.

They first want to tell you there are medications that will help make life easier and possibly slow the progression of disease. Before you consider taking any pharmaceutical to extend your odds, add a few more years to your life, take time to educate yourself on the side-effects and what type of life will those drugs afford you?

Pharmacists, and physicians who don’t suffer like you, have no clue to what YOUR quality is. Because to them, it is far more important, that you live longer than to have any life of quality. They base it on statistics and clinical trials, and try to force the statistics on you and tell you “don’t worry, most of the side effects are not bad and disappear over time”. Then a few years later the FDA pulls the “dangerous” medication, and lawsuits by the thousands appear. So why hassle with even putting yourself through that? What quality is there in being so sick from pharmaceuticals, that you become a person just existing, and not living?

I may not always have the energy to do the things I would love to do, but I try my best not to ruin the time I do spend with family by letting my pain and suffering being the focus of any topics. I use the grin-and-bear-it method and just “live” when I can and drag my sorry ass into bed for naps that can last a few days to recover in silence. To me, despite the pain and long recovery, I am blessed to be able to cherish what times I can. I would rather take less medication and be able to function in a semi normal mental state, than extend my life being so doped up there is no quality to it.

Now how to convince people, although I may have to adapt how I attempt some of the adventures I want to undertake? I still want to be included within reason, but once diagnosed it seems like everyone is afraid to be around me, when my MS rears its ugly head and kicks me. As if I have the plague, friends all flee. I no longer get invites to do things. I am no longer fun to be around.

Good thing I have the few chosen close friends in my life, who don’t care how I feel or look. They will drag my sorry ass in pajamas, rolling in a wheelchair, or hauling me like a sack of potatoes over their shoulder, just to make sure I am included in whatever activity or adventure they want me to be a part of. To those few, I am forever thankful. Because one day, there will be a time when I cannot be flung over a shoulder or rolled around and that memory will bring a smile to my face as I recall it.

If you’re someone that has been gifted a life sentence, diagnosed with a disease for which there is no cure, try to make the best of it. Choose options that are comfortable for you. Talk with people who have been there, are headed there, or took that journey willingly with someone they love. Make informed decisions on how you want to define your quality of life verses how long you plan to exist.

Life is about LIVING, not waiting to DIE.

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

Tag Archives: living with MS

Can’t Shake This Feeling

Quality VS. Quantity

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