Fibromyalgia/Chronic Pain

#Help for RonovanWrites deadline

FlorenceT Blogging, Fibromyalgia/Chronic Pain, Life, Writing , ,

Well it has to happen… there must indeed be a deadline to the campaign to help Ronovan.

Ronovan thanks everyone who has supported the campaign for a new laptop so he can return to writing, blogging, and being with his blogging community.  He has asked me to end the fundraising at the end of Tuesday, 11 August, as he wants to get back sooner than later even if the goal amount has not been met.  He will purchase the best he can with the amount raised.

Psst, I don’t think he likes the idea of needing help and wants this to end soon. Now someone find me an emoticon for ‘rolling her eyes’ on WordPress? 🙂

Anyway, there you go people, you have till the end of Tuesday, 11 August to help in whichever way and in whatever amount you can.  Click on this link to contribute and read the full story of why he needs his laptop. It’s not just for blogging.

Don’t know what I am talking about? Read this post and help out.

Thanks everyone!

– FlorenceT

A Conversation

Ronovan Fibromyalgia/Chronic Pain, Life , , , , , , , , ,

A Conversation

by: Ronovan

 

“Tell me how you’ve been doing since the last time we spoke?”

 

At least the questioning was consistent. I supposed I should take comfort in there being something that remained the same. Of course that didn’t stop me from replying without the brain filter in place. “Do you really have to ask?” I kept staring at the ceiling tiles. I wondered if the room was really that dark.

 

There wasn’t a reply or even a sigh revealing a hint of disapproval or exasperation at my tone of wording. Not that I really expected one. “Okay, fine, I’m about the same as always. Is that what you wanted to me to say?”

 

“Only if that’s the way you’ve really been.”

 

Was that what they call passive aggressive? “Yeah,” I sighed. I had always wondered what that ‘sigh of an answer’ meant in reading but now I knew. You could sigh and speak at the same time. It’s like a surrender of spirit almost.

 

“Tell me how yesterday was.”

 

“It’s like every other day Pinky, I tried to recover my world,” I said.

 

No laugh. None expected. But I imagined old cartoon shows about mice weren’t on the viewing list.

 

“Where do you want me to start?” I stared at the spot on the ceiling where the shadows always made the dust look like a puppy if you looked just right.

 

“How did you sleep?”

 

The thought of ‘in a bed’ came to mind but I knew better than to be that sarcastic. There was being pretty tolerant and forgiving of my moods, and there was downright disrespectful. Even if I didn’t have the brain filter any longer I still knew better than to be downright disrespectful. “I woke up about 1:30 the first time, I think. The days tend to run together after so many being the same.”

 

“Are you sure it wasn’t 3:00 AM?”

 

I was wrong there was a sense of humor. “You’re a funny guy I don’t care what they say about you.”

 

“Why did you wake up this time?”

 

I smiled in spite of exhaustion. “This is a funny one. I think I actually breathed too hard.” I knew that wasn’t going to be enough of an answer, but it was the truth.

 

“How do you breathe too hard?

 

“Well, actually I just took a deep breath for some reason. It could be the sleep apnea.” But if it were sleep apnea then I would not be breathing at all, but then I would take big gulps of air. Okay so it might have been the sleep apnea.

 

“And why would the deep breath wake you up?”

 

I started counting the tiles in the ceiling, as if they had changed in number since last time, or the time before that, or even the time before that one. “Pain Monster didn’t like it.”

 

“The ‘pain monster’ is your lower back?”

 

“Yes,” I began. “At least that’s what woke me up. Then Neck Grinder started to protest as well.”

Continue reading →

I Don’t Stop Living

Ronovan Fibromyalgia/Chronic Pain , , , , , , , , , ,

Fibromyalgia Doesn’t Stop Me Living

 by: Ronovan

If you’ve been around my blog a bit you notice a lot of things written about how I hurt sometimes, usually in my poetry. That’s my release, that escape hatch. But something else you may have noticed is, I haven’t stopped living my life.

 

For one I do a fairly decent job of putting out a lot of content for my blog, and it’s varied. Perhaps that’s just the old noggin not being able to shut down from the concussion.

Buck Toothed Smiley with Light Bulb

 

 

Sorry, I had to write down an idea for another blog article. But as I was saying I don’t let Fibromyalgia stop my life. I have a son, let’s call him B, yeah for boy, original, huh?

Boy at desk with apple

But wait, you say you don’t know what Fibromyalgia is? Wow. Actually I’m not surprised. Oddly enough you may be reading this and have it yourself. You’ve heard of Chronic Pain and Chronic Fatigue syndromes? Then you know something about FMS, Fibro, Fibromyalgia. I’m not going to go into details right now, but just think of having pain all the time or pretty much every minute. I’ll do an article of what it acutally all entails another time, but I’m not letting it take over my life of having fun blogging right now.

Now back to living. I’m not supposed to do a lot of things with my ailments because they make me hurt. But here is the thing . . . it’s a secret so don’t tell anyone else, okay? Good. No matter what I do or don’t do I’m going to hurt anyway, so I’m going to enjoy life regardless.

 

Sure I can’t sit in a chair very long. I can’t lay down very long. I can’t stand up very long. Riding in a car is grrrr. But other than the car I know I can stop or change whatever it is, and those I am with understand it and if they don’t they can just go on without me.

 

My son needs practice hitting a baseball. We have some wiffle balls to use and he has my old Louisville Slugger little league wooden bat. Yes, I know they use aluminum bats but this is what we have and it is actually working on his strength. Just imagine when he pick up an aluminum bat to hit the kind of speed he’ll have.

Wiffle balls and bats on grass

So what do I do in the day time? 20 wiffle balls in a bucket times five rounds of buckets equals 100 pitches from the guy that isn’t supposed to do things. Oh and that’s 2 buckets for him to hit right handed, and 2 to hit left handed and the final 1 for whatever he wants to do. Yes, 9-10 year old who can switch hit, all on his own. These are very light so it’s not the weight that gets me it’s the arm motion. My arm doesn’t move like that any longer, but I make it do it.

 

He sometimes wants to learn to throw a spiral with the football, American football. I’ve discovered during this summer that I can apparently pitch pretty well and my throwing arm for the football is not bad at all.

 

What happens after these B times? Yeah, pain. What happens during the B times? Yeah, pain. But you know what happens as well? Life, learning, laughs, and love.

 

Just because I have something that can’t be cured doesn’t mean that I have to let it dictate my entire life. Are there days I just can’t do things? Oh yeah, plenty. And everyone understands that. But if it is at all humanly possible I’ll do things. You see I’ve lived with pain for so long that it’s kind of like a limp. I have it every step I go but I don’t notice it, I just keep walking and I keep getting to where I want to go.

 

Oh, but there is one thing my son won’t let me do. He won’t let me on his bike. I tried when his back was turned and he nearly freaked out. I don’t know if he was worried about me or his bike. But yeah, he does watch out for me.

 

Much Apprecation to all of You

& Especially for my boy B

Ronovan

 

© Copyright-All rights reserved-RonovanWrites.wordpress.com-July 05, 2014.

If not me then who?

Ronovan Fibromyalgia/Chronic Pain, Opinion Articles , , , , , , , , , ,

If not me then who?

by: Ronovan

 

I recently wrote an article called The Disguise of Contentment about life with illness and disabilities and how others look at seemingly healthy people who suffer from them. As I was writing it I simply wanted to share with people the other side of something of stereotyping.

 

If you’ve been reading my work for a while you know I don’t hold back. I only know how to write one way and that is personal. My site is primarily a place to release those thoughts in my mind, as I have put it in a previous article I call it Writing for Therapy.

 

I say all of this to make sure you understand to never look at anything I write as attention seeking or a pity party. I’m beyond all of that. Sometimes the pain gets to me and I just need to let the feelings out in words and by doing so I have discovered there are people out there who can relate. They find comfort in knowing they are not alone and that a person is productive and creative even while living with some really whacked out pain problems. (I apparently love the phrase ‘whacked out’.)

 

Just to clarify a bit of that previous article and its intent:

 

If you see a person with disabilities that are obvious you have the opportunity of choice; a) treat them just like anyone else, b) treat them with pity, which they don’t want, or c) be aware they may need assistance at times.

 

For someone appearing healthy, such as myself, those options aren’t there. What this brings me to is people with disabilities don’t want pity they just want to be understood. I know it’s difficult to understand in a brief encounter with someone, but the way to be is like me in a grocery store and asking for help. If I ask for help then I need it. If I park in a handicap spot and if my car has the right tags or permissions on it to do so then keep moving and don’t look at me like a criminal.

 

I personally don’t care. I’ve moved past what others think about me. My main mission is what I think about myself. If I am good with me then I’m all good period. But how will other people know if people like me don’t share experiences?

 

And remember, I’m the same guy that wrote about writer’s needing fluffy butt cushions and canaries. Just because there are some raw and honest work from me doesn’t mean that is what defines me. I’m a funny guy. Ask my other self, he’ll tell you.

He lies.

Shut up, Os.

If you see an article or poem that appears to be a pity poem or a sympathy seeker don’t think that. It’s just me releasing the only way I have available and in a way that I hope others can connect with and say “Yeah, that’s me too. I’m not alone.”

Just so no one thinks this is just my rants about things, please read A good day out and a dollop of judgement at The Happy Starfish.

© Copyright-All rights reserved-RonovanWrites.wordpress.com-June 22, 2014.

 

The Disguise of Contentment

Ronovan Fibromyalgia/Chronic Pain, Life , , , , , , , , ,

Stephen Hawking

 “I can’t disguise myself with a wig and dark glasses – the wheelchair gives me away.”-Stephen Hawking

 

 The Disguise of Contentment

by: Ronovan

Do you have certain thoughts when you see an elderly person slowly getting out of the car in the handicap spot at a store? What do you do when you see an elderly person in a store having to use a walker to walk with? What about those with obvious disabilities?

 

If you were to think about it honestly, you probably don’t give it a second thought. That’s who is supposed to be using those parking spaces and walkers, right?

 

I recently changed my Profile Picture back to my real photo. I was hesitant to do so because I was worried it would take away from the impression one gets from my writing. I know how when I read someone’s work the image used does sometimes add or take away from what I am reading but eventually I no longer even see the person as I read more and more of their work.

RonovanWrites

Now, look at my picture. You see a man that’s 6’1”, fairly clean cut, broad shouldered, some say rugged looking. I think rugged means someone who has been out in the rugged weather to much and is worn out looking, but okay, I can agree with that. When I wish I can assume the role of a bulldozer in crowds, politely so and people tend to get out of my way. This has usually occurred in the past when someone has held onto my shoulder and others are holding onto them in order to follow me through the crowd. Teenagers love me for this.

The rugged guy is leaning on a rail over a beautiful river, and somewhat smiling at the camera or at least not frowning. In other words you see the picture of contentment.

 

Arthur Erickson

“Illusion is needed to disguise the emptiness within.”-Arthur Erickson

I’m the one that gets out of the car slowly from the handicap spot. I don’t use a walker in the grocery store, I lean on the cart instead. I’m the one that walks slowly forcing anyone with me to take their time. I’m the one that people have to get things from the bottom shelf for.

 

I’m the one that people look strangely at as he gets out of the car. I’m the one they look strangely at as he shuffles through the store. I’m the one that gets left behind as people walk on ahead. I’m the one that can’t get anyone to help get things from the bottom shelf.

 

I’m the one leaning on the rail for support. I’m the one hoping he doesn’t fall into the river as spasms of pain shoot through his body. I’m the one holding his dark glasses so he can have a normal picture of himself while hoping the earplugs blocking out the sounds don’t show up. I’m the one hoping the smile reaches the eyes in time before the click of the camera happens.

 

But what do you see?

 

Do you get yelled at as you get out of the car because you ‘look’ healthy? Do people stare at you as you shuffle through the store because they think you are on drugs or drunk? Do store employees chuckle when you ask for help as they walk away believing you are in jest?

 

Did you have to spend two hours of pain in a car . . . one way . . . to have your picture taken over a river? Do you have to hear the grinding of neck bones and the snapping and cracking of back bones every time you take a step?

 

Do your fingertips ache and hurt and feel like nails are being hammered into them every time you hit a letter on your keyboard? Is that keyboard your only escape and healing and chance at distraction and happiness? Do you pound the nails deeper or give up happiness?

 

I didn’t write this as a complaint about some of what I go through. I wrote this to show you that you don’t know what is on the inside of a person. I don’t go around wearing my illness and pains on a t-shirt or make it obvious. Just know that when you see people that there is a reason they are the way they are. Maybe it’s not a physical thing, it might be they are shy and don’t want to be bothered. There is a reason for it. Respect it. I walk slower, I move slower, but I ‘look’ healthy. And I am fine with that.

 

 

But here are some things I am not fine with:

  • A relative, knowing about my amnesia telling me to not forget about my family and then saying it was his attempt at a joke.
  • A person assuming that if I build up the courage to ask for help that I am just joking
  • A person assuming seeing me walk upright at a decent pace means I have been faking it
  • A person assuming because I have a blog and type a lot that I must be okay
  • A person assuming that because I can type that I am not exhausted and barely hanging on
  • A person assuming that because I can give words of encouragement and love that I must not feel pain inside
  • A person assuming that because I feel pain inside that I cannot give honest words of encouragement and love

 

Two things made me think to write this, one was a comment recently and the other was a thought I had.

 “Friends may not know who you are, but they’ll never forget who you were.”-Ronovan

 

“The best live among us in disguise.”-Louis Dudek

 

© Copyright-All rights reserved-RonovanWrites.wordpress.com-June 21, 2014.

 

One More Year Old Feels Like Ten

Ronovan Fibromyalgia/Chronic Pain, Poetry , , , , , , , , , , , , ,

One More Year Old Feels Like Ten

by: Ronovan

 One Candle

One more year older

This last one felt like ten

I wonder why I go through it

Was it punishment for a sin

 

Yeah, I know, don’t worry

I’m just talking out loud

I know the good Lord don’t do that

He done took him up in a cloud

 

But still I don’t mind asking

Why, why did all of this happen

A year of my life has done gone

And a steady tap on the brain keeps tappin’

 

You would think I would get used to it

Waking without a solitary clue

But how do you grow accustom

To something that every day is new to you

 

Hmm . . . Yeah, I know it’s all good

I got my health and home and something

Haha, the health is the something

That I’m certain must be the crunching

 

One more year older

The next will feel like ten

I know it was the Enemy

That tries to drag me into the den

 

I must have been on the right track

Cause the Enemy don’t worry with those

That are already with him

He worries about those who are his foes

 

And to that I say Amen

 

© Copyright-All rights reserved-RonovanWrites.wordpress.com-June 20, 2014.

Spikes and Smiles

Ronovan Fibromyalgia/Chronic Pain, Poetry , , , , , , , ,

Spikes and Smiles

by: Ronovan

 

Dull railroad spikes through the cracks

Driven constantly as if driven by insanity

Days go by in countless fogs of phantoms

Drifting in and out of vague humanity

 

Ever wanting to continue onward in smiles

Enters pressing of matter into the prickling race

Even the muscles of effort to upturn lips

Engraves lines of pain on tender skinned face

 

© Copyright-All rights reserved-RonovanWrites.wordpress.com-June 18, 2014.

Take the Pills

Ronovan Fibromyalgia/Chronic Pain, Writing 101-Blogging University , , , , , , , , , ,

Take the Pills

by: Ronovan

Coffe and Pills

“Take the pills. They’re supposed to help you,” she said.

The pills looked familiar to me. The kitchen windows had that morning light blue glow. I like that time. “Why are there so many of them?”

“Because the doctor said you have to take all of them,” she said. “We have to go through this almost every day.”

I looked at her. “I just like to know is all.” I took the small medicine cup full of pills. Some of them were kind of pretty to look at and had cool shapes. A mouthful of water and I swallowed them all at once.

“I would choke on all of that,” she said. Continue reading →