Invisible illnesses SUCK!!!

Invisible illnesses SUCK!!!

If you don’t know, you just don’t know. If you don’t live it you can’t relate.

From the outside looking in doesn’t do.

From the imprisonment within my body things are really not that great!!

Invisible illnesses and disabilities are a double edged sword. Most render you riddled with pain of indescribable proportions. Often crippling and exhausting. Yet INVISIBLE!!!

The pains are more than enough to have to battle in the physical. Honestly, no matter how much you fight it begins to effect your mental and destroys your self esteem. While INVISIBLE to those around you.

Imagine being viable and active in one moment and the next unable to ambulate. Imagine having months of no pain only to be slammed and confined to your bed. But no one can see the INVISIBLE assault.

It’s a very lonely state of being. It causes isolation, separation, and misunderstandings. We break dates and miss monumental moments in the lives of our loved ones. They may interpret it as disregard or lack of support. Not realizing the heartbreak it causes the sufferer. I mean because after all these things happen sporadically and they do so INVISIBLY!!

As I lay here in sound mind but with an unable body, I’m sad… no more like heartbroken!!! I missed my baby sisters wedding because of the INVISIBLE hell of being trapped inside of my own body!!

INVISIBLE illnesses suck!!! And I hate it here!!!

Pain that all of the words in every book couldn’t possibly explain.
Unable to walk, barely able to stand. If you can call the vertical crawl that I am doing standing.
Pain in my chest as I labor to breathe. I lay here in fear, with tears in my heart and hiding behind the lids of my eyes. No food near, not a have you eaten spoken by anyone who can change it uttered my way. Haven’t showered in now 5 days, not because I don’t want to but because I can’t lift my leg over the side of the tub and only God knows if I can stand long enough. So I wash up during one of the times that I drag myself to the bathroom. It’s hard to believe that I could be so I uncared about. Is that really the case? Or is it that despite me explaining and saying time and time again how my body is betraying me that those around me don’t get it. I lay here in pain, my mind racing, fear of the unknown yet inevitable. I am already trapped in this body, this body that doesn’t work as it should. I don’t remember the last time that something didn’t hurt!! I am afraid! I am alone amongst others. When will it just decide to stop? Holding me captive inside? I feel like everyday I am dying and nobody knows it but me. Today has been horrific and no one sees. Those that I lend my shoulder and my ear at the drop of a dime don’t even see that I am crumbling only a fragment of me. When will anyone see? They won’t! These ailments in my body aren’t called invisible diseases for nothing but I keep on hoping, wishing, and praying that someone, anyone will see… that again there goes the death of a part of me.

© Tracylily 2016 All Rights Reserved

Invisibly and inaudibly Me.

Invisibly and inaudibly Me.

Here I sit invisible, in plain view.

Out loud I cry, yet inaudible to you.

No wonder you don’t see my pain, But with the simplest of tasks I constantly strain.

I’m invisible!

You say I don’t tell you how I feel, that my pain I don’t share, no I do tell you, no matter how hard it is for me bear.

I’m in audible.

You don’t see me, refuse to hear me, yet my suffering doesn’t relent. I thank God for those few that do though, they have to be heaven sent.

Lord, I still truly thank you even though is quite lonely and frustrating living this life, invisibly and inaudibly me.

© Tracylily 2016 All Rights Reserved

As I die before your eyes…

As I die before your eyes…

As I answer every call providing encouragement, companionship, and love; do you see me dying before your eyes?

As I struggle to come to you do you see that I can barely stand? That my joints ache? That my knees are buckling? That I can’t feel my feet?

Do you realize that with every step that I take pain that is like fire in my bones shooting through my body?

When you insist on texting instead of taking my calls do you even remember that I can’t feel my fingers? That my hands are cramping up? Or that my shoulders hurt so bad that I struggle to hold my phone?

Ever wonder why I wear the same five outfits repeatedly? No it’s not all that I have, but it’s what hurts the least. Do you know that taking a shower brings tears to my eyes because the water feels like shards of glass cutting through my skin? That I struggle to sleep because the sheets hurt… oh yeah and zippers are nearly impossible.

BUT, when you need me I am here! When you are weak I pray and console you. I wear a smile in my voice and manage to tell a joke or two to lighten your mood. I give you my shoulder to lean on when you cry and even wipe the tears from your eyes physically and sometimes virtually.

Do you know that I go days with no one to talk to? I make go a week with no human interaction. What shoulder do I have to lean on? Can’t tell you how infrequently I’m embraced.

My illnesses and symptoms are VERY real, I suffer everyday. But because you don’t see them, they aren’t a reality to you and my suffering goes unnoticed… as I slowly die before your eyes.

©Tracylily 2016 All Rights Reserved

Unshakeable…

Unshakeable…

This life is far from easy to say the least!!

It is filled at times with what seems to be more downs than ups.

Sometimes tears fall uncontrollably as if a part of Niagara’s…

Pain in my body that in turn pains my heart.

With a mask created by a smile in my voice I navigate my days and late into the nights.

On bended knee, with the bowing of my head, and behind closed eyes I pray!

God gives me the strength to tread where my feet don’t want to travel.

With faith sometimes only the measure of a mustard seed, but faith nonetheless; on Gods promises I stand!!

UNSHAKEABLE!!!

© Tracylily 2016 All Rights Reserved

My mask…

My mask…

On my face I wear a mask, I’ve worn this mask most of my life.

I hide behind this mask to conceal my pain. Be it physically, emotional, or spiritual.

I wear my mask so that others believe that all is well. Or when I don’t feel safe expressing my pain.

Masks are worn to conceal hurt or even shame. They hide the negative, but then again can keep positive qualities hidden as well.

My mask shows every emotion that I can’t or don’t truly feel. It has two holes just like every other mask.

Through these holes my eyes are revealed, but not for me to see. They are an attempt for others to see behind the mask, for them to see me. So tell me do you see them? Do you see me?

I don’t want to hurt anyone, especially if the someone getting hurt is me.

Sometimes I wish someone would look closely enough, enough to see the pain and brokenness, that is me.

I understand how dangerous a mask can possibly be. Know that those who wear masks often tell more truths than those with open faces, ironically.

© Tracylily 2016 All Rights Reserved

Upside down

Upside down

Upside down… right side up… sideways? These days I just don’t know. Seems that I can’t get my bearings. I don’t know if I am coming or going. Do I start or do I stop?

This life has become lonely, isolated.

Much like trash I feel discarded and forgotten about. Like a discarded toy. No more like a soiled paper plate.

As if my value was solely in my ability to support what was needed to nourish and sustain others.

Now that I need nourishment, I am invisible. And when I dare ask for help, it is done begrudgingly.

When I need the love and support of those that claimed that they would never leave or stop loving me, I am ignored.

When in turn I am quiet, it’s said that I have an attitude. No, I have a need. God forbid that! But I do!

I need to not be treated like I have the plague, like I am a leper, like I am trash!!

I want normal conversation, I need to be hugged, to have my hand held, to be told that everything is going to be okay.

I’m a person. I am a person on hard times. I am a person who has had the rug snatched out from under me. I am a person who’s life has been turned upside down.

Yet I am still the same person that checks on you even when I’m not doing well. The same person who loves you despite your flaws. The same person that will give you my last despite having little of nothing. The same person that is slow to speak when I’m having a bad day so that I don’t take it out on you. I’m still your person!

It hurts that now I am an invisible and disposable person because my life is upside down.

©Tracylily 2016 All Rights Reserved

This thing called Fibromyalgia

Fibromyalgia is as big funny looking word that packs even bigger but not so funny pain.  Pain is not the only thing that this condition carries however.  To live just one day in the midst of a Fibro flare would cause most to want to tap out.  Yet we that battle this monster everyday are often categorized as lazy, over exaggerating, anti-social, and even attention seekers.

It hurts my heart that there are even medical professionals that are ignorant enough to dismiss the mental and physical suffering that we endure.  From one day to the next we never really know what to expect from our bodies and minds. Truthfully, a flare can hit at any moment for any reason so we really don’t know what we will have to deal with from moment to moment. Little is really known about Fibromyalgia, its symptoms, or triggers.  Recently, I took a trip to the emergency room and had a Doctor to tell me that Fibromyalgia isn’t a real “thing”.  That it is just a generic term used in the medical profession to categorize “unexplained” pain.  What an insult and slap in the face.

As I laid there unable to stand and bear weight on my legs due  to shooting pain from my hips to my ankles, while having muscle cramps in my back, fight the urge to vomit, eyes unable to focus, and not remembering what I had done the day before, all I could do was choke back my words. With tears in my eyes, I asked God to hold my tongue.  I vowed to myself that I would help to bring awareness to those so sadly ignorant to our fight.

In the upcoming days and months I will share through my eyes and my body this life changer called Fibromyalgia.

Tracylily