Help…The World is Closing In


Any thoughts or prayers that anyone can send to my family would be appreciated. 

I’m at that place right now, where so much is going wrong…I just want it to end. Know that I could never kill myself. It’s just that wish that this would just END, somehow, anyhow.

My Doctor, who is also my Mom and Sister’s Doctor is continuing in his crusade to “fix” is by restricting our access to medications. Medications he recommended and put us on. It’s much to complicated to get into, but needless to say, my Sister may end up in the ER from withdrawal, my Mom is suffering, I’m still not recovered from whatever is causing the excess of pain in my whole body (and that same Doctor is “expecting” me to cut back by a certain amount before my next appointment, without offering any help or other ideas or tests). The nursing home we picked for my Grandma is grossly understaffed and we are looking into maybe having to move her again if we can’t get thru to them. Then add on all the money issues and regular day to day stuff that’s almost impossible to accomplish right now….

I just can’t do it. God Help Us, Please…

I wish I could just crawl into a hole somewhere and not think for feel any of this. I’m barely surviving myself…if no one in the house can survive….it’s only a matter of time before it falls. 

This has to end. Somehow. I just hope it’s not in pieces too small to pick up.

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I’m Still Here


I’m here everyone and  thinking about you whenever my brain clears. I promise to post as soon as I can. But right now, all I can do is try not to curl up in a ball (which I can’t do anyway) and cry. The pain is so bad right now. I hope you are all doing much better than me…I truly do. – ❤️

Sharing – Fibromyalgia has many super powers, most notably the power of Invisibility.

As I sit here wide awake in the middle of the night, uncomfortable and in so much pain. I can completely relate to this post!

Mindfulness and Honesty

As a child I would fantasize about having the Super Powers. The power of Invisibility always intrigued me. I could sneak around from place to place, creating havoc if I chose. I’d move a seat and watch a boy fall down, everyone around laughing and assuming it was the boy’s fault. I could trip the school bully or snap rubber bands at my classmates. It would be very difficult to figure out what’s going on in that classroom!

As an adult it’s my Fibromyalgia that has the Super Power of Invisibility.
Not really what I was hoping for.

Fibromyalgia causes many different symptoms, that are all unique to each patient.
I’d like to try to make visible my symptoms, I’d like to explain how different my life has been since I started feeling sick. I think we’ll discuss that further in my next post.

Spent all day in bed and felt desperate to show my inner pain, so I used black eyeliner. Spent all day in bed…

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Poem – Flutter

Just the smallest potion, a round blue pill, a softly spoken spell. It goes down easy, this small bit of magic.

A potion to still my mind, clear my thoughts, take away the pain, the loneliness of being by myself. By myself. Not a bad thing. But the most horrible prison, the prison thought. If I can’t think, don’t have to feel. 

The sweet indigo surrender. Turn off the bright light in my mind. The light that shows all the cobwebbed corners, where mortals fear to tread. 

To stop the dreams. Dreams of the past or of the future. A future I will not find. I find bliss in my mind, bliss stolen with a flutter of the eyes. 

The cogs turning. Turning on the mechanism of my mind. Words falling onto paper like lost hopes, dreams and lost thoughts. A flutter, a thought, a feeling. STOP – must move – one arm – then the other. Go thru the motions. Try not to think, not to feel, not to hope. So I don’t fall – try to fly on wings of hope. 

Thin filaments, softly flowing. They are like a dream, then gone, like a memory – then falling, falling fast, faster than hope, faster than sound, fear and happiness. Catching a glimmer, a wisp, like sun thru the clouds. A flutter. A sigh. A light to find strength. 

The last box in an empty attic, always the last box, the last hope, the first fear, the first dream. 

A dream of a soft touch, a quiet presence, mortal and real – a glow, a reassuring weight, a caress, a wonderful agony. 

An overwhelming flutter – a dream – fleeting – falling – a teardrop falling, bittersweet and salty – A memory of lightness, weightlessness – potion – spell – take your hold, slow my thoughts, my dreams, allow me to open the last box in the attic of my mind once again, and again, and again. 

Hold me in your mockery of the embrace seek so badly. The embrace I look for in every moment of my existence. 

Keep me afloat in the sea of my sorrow – on my flimsy raft of potion – Take me away from myself – to be loose in the darkness of sleep – the only embrace I have. 

I am uninvited in my own mind, a stranger in my own body. An unknown in a wicked universe – A flutter – a blink – one leg – then the other – Just a flutter –

     – Written by Kahlan222 on 12/05/2005

*just a note: the medication mentioned in the poem was my antidepressant and was neither blue nor round…I took some creative liberty there. This was more a bought of free writing than an actual poem. I left it largely exactly as it was written…a raw unfiltered insight into a dark time in my depressed mind. But I re-read it recently and felt like I should share it. – ❤️

Sharing – Shame


This felt so much like I was reading about myself! The idea of “waiting until you feel better”…

iamchronic

So lets talk about it.

We have to live here in our bodies, all of us, we have to try and find peace within our minds. But sometimes and sometimes is often almost always, it is shame that ruins our peace. Shame, the word deserves to appear in Cap Locks ; SHAME, to truly represent the unmovable wall that it can be.

I am ashamed. I am ashamed of myself. And it the most awful kind of shame because I know it shouldn’t be happening, this is not its time, I’m 32 and the world wants me to live,love be living, I feel that. But I also feel shame. I feel shame of the heaviest kind, the weight of it pounds upon me like the heartbeat of a phantom twin. My shame twin has birthed upon my back and I am to carry it, everywhere, everywhere.

I am ashamed, I am…

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Sharing – Not So Bad


This is so beautifully written and has an undercurrent of positivity and happiness found in this world of pain we live in.

iamchronic

Imagine something happened to you that’s ‘Not So Bad’. Its not hard to imagine..it might have happened to you many times.. Perhaps someone broke up with you when luke warm feelings had you considering breaking up with them. You didn’t get the job that you couldn’t quite decide if you wanted. Not so bad.
Imagine something has happened to you that is ‘not so bad’.
You get sick..but blessedly it’s not cancer, suddenly you are in pain but its not Arthritis, you are losing control of your body but its not Parkinson’s..Not so bad. You discover that you don’t even have an illness..it’s a syndrome (whatever that means, some weighty text book some where, knows). This helps you to reassure those around you who are worried, it makes you say “it’s not so bad” and a few of those around you say “At least you’re not dying”. You learn to…

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Just Do It


While this slogan works great for Nike, for those of us with invisible illnesses it’s not so simple. 

Interacting with the outside world is a tricky business. It’s hard enough to keep up the closest of relationships. To be around those that share your space, your spouse, children or other family.

When we go out into that sea of “normal” people doing normal things, almost all of us look just like them on the outside. To strangers surely; but most of us have become so talented at acting that even our friends can’t see the truth of what is raging in our bodies and minds.


We’ve all heard them…classic responses from strangers, bosses, co-workers, doctors, friends and even family:

“If you just tried harder and went outside you would feel so much better!”

“You need to stop overthinking everything. It’s what’s causing all your stress.”

“Just get up and do ______.”

“Why are you so sad? Think about all the good things in your life.”

“How can you possibly feel so bad, you look great.”

“You’re too young to possibly be in this much pain.”

“You’ve been like this for so long. You just need to snap out of it.”

“Here, I’ve got some aspirin.”

One of my favorites was a boss who used to complain about how I spent too much time in the bathroom. In reality it was mostly digestive issues and having a place to cry in private. She didn’t have an answer when I asked how I should fix that.

These people, they look at us and see a “normal” person. They somehow can’t understand how we look okay and yet can be a complete mess inside.

I wish there was a way to educate people. To help them understand how to relate to those of us who can’t simply snap our fingers and be okay.


So my remember that none of us chose this. We are some of the strongest most resilient people around. It’s just that the constant weights we have to carry with us, they bog us down. They make it harder and harder to carry on the pretense of normalcy. It’s not our fault and all of us generally hold some sense of guilt (or shame and embarrassment even) for any time we “slip up” and can’t manage a task we thought we could, go to an outing that was planned or say something we wish we could take back.

I wish this issue could be treated the way other topics are, the one that comes to mind are all the commercials for how to talk to your kids about drugs. There are so many places you can go to get help. We should have that. 

I know there are many helpful websites and such out there, and if anyone has one they know of, please add it to the comments and I’ll update this post. 

What I mean is that the voice of this issue should be louder. I’ve seen on here notes that strangers have left on the cars of people with disability stickers, criticizing them for using a space that a “real” disabled person might need just because they didn’t look disabled enough. 


I look forward to a day when compassion rules over skepticism.