Poems

General
1

I keep looking for poems to help me to understand, cope with my fibro and for me to show to friends as I believe some of them explain it better than I ever could.

So I picked my top 3 I read today and will keep adding as I find more and encourage you to comment with the poems you've found or written.

If you could live in my body,

just for a day,

maybe you wouldn’t think

that I feel okay.

You might understand

what it’s like to be tired

by just trying to live,

just doing what’s required.

If you could live in my body

you might begin to see,

that a simple drug

won’t set me free.

If you could live in my skin

you’d learn to understand

that it’s not in my head,

nor was it planned.

I don’t want your pity

or to make you resent.

But I don’t need to apologize,

or have your consent.

I am sick and I’m tired

every single day,

and it won’t help to ignore it.

So listen when I say:

it helps when I relax

with a friend and some tea.

You can’t understand

but please, believe me.

Submitted by Beth Turner, © butyoudontlooksick.com

Fibromyalgia is Real

Fibromyalgia is real

There is no doubt

If you don’t believe it

Here’s what it is all about !

It’s about being a professional

At the top of your career

And losing your future

In less than a year

It’s about having unrelenting pain

No one can figure out

Having test after test

That shows nothing but doubt

It’s about knowing your pain is real

And fighting for your rights

Being so upset and frustrated

Getting no sleep so many nights !

It’s about trying to find the right doctor

Who can offer you some hope

Who knows what it’s all about

Who can give you what you need to cope !

It’s about learning to live again

With a whole new personality

Letting go of the person you once were

And facing a whole new reality !

It’s about losing friends and family

Because they think “it’s all in your head”.

But truth be known, there are days

You hurt so much, you can’t get out of bed !

It’s about setting new priorities

“So what if there is dust”

You have to take care of yourself now

And do only what you must !

It’s about holding on to hope

Each new day could bring a cure

It’s holding on to this hope

That will raise your mood for sure !

It’s about being thankful for the few

Friends and family that are true

Believing and hoping for a miracle

Praying for strength to make it through !

© 2004Kammy Salmon

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PAIN

Pain is quite invisible

And it's just like the air.

'Cause while you can not see it

There's no doubt that it is there.

Perceptions of pain differ,

In that my headache may feel

Quite different from the one you have.

But both are very real.

You can't diminish someone's pain

By saying, "It's not that bad."

Unless you're there inside their skin,

You can't know the pain they've had.

There's pain that prickles, pokes and prods.

And pain that's underrated,

Pain so intense and piercing

That it screams to be sedated.

If someone tells you they're in pain

They likely mean what they say.

So please don't scoff or laugh or scold.

It could be you someday.

FMS pain is relative

To the pain of the hour before.

There's pain that knocks us off our feet,

Or sneaks in the back door.

We'd rather our pain weren't relative

'Cause relatives stick around.

Better it were a stranger

Who'd pack its bags and leave town.

Written by Sue Jones,

Author of Parting The Fog

2

Another great one!

Fibro, A poem. Could you imagine being 20 years old, 30 years old, And being stuck in the body of a 90 year old? Watching your skin turn to hell and flake, away, And your hair never cooperate anymore? Seeing teeth trying to loosen and Feeling like some days your eyesight was bad, Or that your sense of time was starting to go? Can you feel the agony Of hips that don’t want to work, But must work to get through a day, Feet too swollen to put a shoe on, And fingers too sore to do it anyway? Necks that are too tight to hold up your head, And backs curving under the strain, Stomachs that can’t digest anything Because the stress of a single hour grows too much? And can you imagine sleep the only solace, Only that sleep isn’t restful And it isn’t kind? Wake up with more pain then you went to bed with And you don’t feel rested anyways? Doctors don’t really help And the other treatments too expensive to convey, But each day passes with swift regularity And no one gives you a break. What pain is there without bruises? What skin irritation without a sore? What sleep deprivation? Just go to bed earlier and get more! What stomach issues, just eat better. Mind over matter, make it work! But when Fibromyalgia is the villain Believe me, he’s going to make it hurt. ©2010 Jennifer Altherr

3

I have posted this before and linked it... but I think this would be a good place to repost it. This was a letter sent to the writers friends and family about her and here FM condition... It has really helped me a lot to connect all the dots between my condition and the effects it has upon me to its common root. Fibromyalgia.

Bill Sr.

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Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don't want you to think I'm making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Other times I may take a lot of medication and still won't feel any better. That's just the way it goes. I can't control how often I feel good or when I'm going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I've seen them too. Look at the list of side effects and the few symptoms they help in return. Even in the best studies those expensive compounds didn't help over half the people who tried them. No matter how happy the people in the pictures look, there's still no miracle drug available.

There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better -- I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person -- and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I've been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall. When there's no railing to hold on to, it's terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that's really all right. I don't want or need you to give up doing what's important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I'll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now. One thing I can tell you is it won't help to tell me I'm irrational. I know I am, but I can't help it when it's happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It's very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

http://teabbs.com/docs/Fibromyalgia.html


Written by:
Patricia Dixon
FaceBook Fibromyalgia Network
04-25-2013

4

These were all good cyber tech I think I need to add that to the ones I hand out

5

Shawna and Bill, these are both very good, so very literal!

6

Omg I loved your poems I cannot wait to read them to my family I’m not doing well suffering so badly feel like giving up then I read this and I want to fight another day thank you for saving my life I wish you feel better too and will pray for your health too love cathryn