Showing posts with label my life with fibromyalgia. Show all posts
Showing posts with label my life with fibromyalgia. Show all posts

Tuesday, November 26, 2013

Im "Published"..well sort of...

I am so excited to share that I had a wonderful opportunity to be part of a book Fibromyalgia Journeys, A Collection: Stories of Courage and Personal Triumph.
My contribution is titled "Never Give Up". I have just one story among many that have messages of hope, pain and understanding. It was written by Shelly Bolton who was featured in Fibro Daily if you want to read her story. This is her second book. The first being Fibromyalgia: A Guide to Understanding the Journey.



Both are available for kindle (or kindle app on your device) for a very small fee, but of course I would love you to read what I wrote and let me know what you think. For those of you who may not know, Amazon allows you to post reviews if you have an  account with them (meaning you have purchased something through amazon at some point) but it isn't not required that a person purchase the item they want to review. It is very helpful if you leave a review.  I am told the paperback will be available soon as well and I will update on that when I receive the go ahead.
I have to say it is very scary to put yourself out there for entire world, whether its blogging, websites, Facebook or support groups but when you see someone that can be helped, its all worth it. When you can inspire someone its even better. I did not hesitate to share my story because I know if just one person can understand what we go through as a result of Shelly's hard work then I can take SOME credit for helping to raise awareness. 

Thank You Shelly for the opportunity!

Here is one review form Amazon
"As a person who has struggled with Fibromyalgia for over 17 years, I must say that I have read many books on the subject. This book is so different and for that I am thankful. These are real people with real stories living with Fibromyalgia. None of their journeys are the same but they all share a solidarity, which Shelly Bolton has so beautifully woven together. I was sobbing by page two of the first story. I forget how isolating this horrid illness can be until I read words from a page that so clearly illustrate my own deep feelings both emotionally and physically. Sometimes the reading is hard because it is so relatable and pulls at your deepest heart strings. At other times, parts are funny and many times hope filled. If you have been diagnosed with Fibromyalgia recently or twenty years ago, be kind to yourself and purchase this book. You will not regret it. Regardless of how long a person has lived with Fibromyalgia, it is always, always comforting to feel validated and to be reminded we are in this together."

So go to Amazon and download here for more stories of hope and know you are not going though this alone!!

Wednesday, October 23, 2013

My Five Fibro Stress Busters

Stress.
How I hate thee. Let me count the ways..
 For those of us with chronic pain stress can cause more debilitating pain than the everyday pain we already experience. 
I am not an expert, but I have found some key things to do that if done on a regular basis can help to reduce the amount of stress we encounter. Some stress in unavoidable no matter how hard you try and that’s where you need to develop some coping skills so you don’t end up in the bed for days at a time.  Ill touch on that later.

First: STOP WATCHING THE NEWS.
If you believe most of what you see, just stop completely. Everything is going to kill. You can’t eat anything or take anything without suffering serious consequences down the road. You will suspect that quiet neighbor or having someone locked in the basement and you will fear for entire state of the world if you try to keep up with current events. If you have a pretty good filter then LIMIT the exposure to the news. Instead of everyday, do midweek. Its far better to hear something from a friend at work and “Say wow I didn’t hear that”, and then let it go,  then to see it on the news, talk about it, think and dwell on it and take it with you to bed. We are inundated with bad news and it is very depressing. Even if you are unaware it can hang around there in the back of your psyche telling you what a sad state we are in. Children shooting teachers, health insurance and unemployment, cancer rates, the economy, hurricanes, overpopulation, chemicals and on and on and on…Enough already right? Lets dial back the crazy!





Second: REEVALUATE YOUR RELATIONSHIPS
Friends and relatives. Are they helping you up or pulling you down? Same as with the news….LIMIT your exposure to the “suckers”. I call them suckers because they drain you of everything you need. Energy, patience, dignity, sanity, and worst of all time. We don’t have a lot of time to throw it away on people who are unaware of how their constant demands or complaining can suck the life out of us. You don’t have to cut everyone off but take a serious inventory of how you feel mentally, emotionally and physically after you spend time with people and see who is a trigger for pain, or depression, headaches or fatigue. Let them know when you get together it can’t be 2 hours of complaining about life, parents, work and kids because it’s just not good for your health. Designate 20 minutes to vent about “whatever” then the rest of your time needs to be constructive and positive. Any true friend will understand.
 Now those pesky relatives. Much harder!! I know!  Try the same and then be prepares to stick to it. Take control of your environment. If they don’t honor your wishes you have to give a warning and follow through.
“If we can’t talk about something else, I’m going to have to leave”.
“This is going to stress me out so we need to change the subject”
“I am going to have to hang up if you keep…..but we can try again tomorrow”
“I love you but this is not good for my health and until you understand I cannot……”
“I do want to help you but THIS will make me sick with worry so can you brainstorm with me a different way to help you”
“I don’t want to have you over until you stop making me feel bad about…….”





Third: LEARN TO SAY NO.
Not a lot of explanation here. Don’t be the chauffeur and the therapist and the organizer. You cannot be all things to all people. Don’t take on too much for all your various reasons…only do what you head and body can handle. If you stretch yourself too thin you are no good to anyone in the first place. “I would love to but I can’t”.
No one will die if you don’t get the dishes or laundry done. So you make sure you all have clean underwear and forget the rest. If someone really needs something before you get on it, teach them how to load the washer or let them clean their own plate so they can eat. I REPEAT: NO ONE WILL DIE because you told your friend you can’t watch her kids, or you didn’t take out the recycling. Don’t get wrapped up in the baby mama drama, cheating, evictions, or the gossip from the daycare. It’s not good for you! So pace yourself and if you’re struggling, think about how important it really is on a scale from 1-10 and take it from there.
“Slow and steady wins the race”


Fourth: LET IT GO! Learn to let it go. Don’t stay angry or upset. Yes things suck, process it, and sit there in it for a MINUTE, then come up with a plan. If you can’t, then let it go. Come back to it later or get a second opinion. You make yourself sick by LETTING yourself stay in a negative state of thought. Life isn’t always easy but if you can deal with chronic pain you can deal with pretty much anything. Yell, cry or throw something (preferably something soft! No broken cell phones please!) and take that minute. But you have to let it go. You will get the headache, back and neck pain, tightness in the chest and the crinkle in the forehead because you can’t stop thinking about it. Find your Zen, phone a friend, lay in a dark room and imagine your happiest place. You HAVE to learn to let it go because it’s not good for you.

Fifth: AVOID YOUR TRIGGERS!
This is an assumption that you have already figured out some if not all of your triggers. I can’t stress enough that YOU have to limit all the things that make you feel bad. If you know you are going to have anxiety in a certain situation avoid it if you can. Some you can’t I know. Don’t skip the job interview or your doctor’s appointments of course. Why? Because, say it with me….THAT'S NOT GOOD FOR YOU! If you can’t avoid them use a coping mechanism.
  • If it’s going someplace new, bring a friend or even two friends. Call ahead and find out when it’s the slow time. Ask questions of a staff member or volunteer to put you at ease when you get there.
  •  If its pain and shopping see if you can bring help, use the motorized cart or hire someone to run the errands. You can even barter with someone. Knit the neighbors kids some hats and mittens and she can grab you some things while she’s out. 
  • See if there are any local stores that can have things delivered.
  • If its food just don’t eat it. Find something else. Sometimes ‘moderation” is not even a choice. For years I felt like junk after drinking beer and I repeatedly said “It’s not a hangover!” Come to find out I have a sensitivity to brewer’s yeast. So after nine months of no beer I had just ONE at a cookout and for 2 days after I paid for it dearly! NO MORE BEER for me.  (And I don’t miss it, never really liked it anyway it was just for social reasons). Just ONE margarita with a few glasses of water I can do with no effects. Two margarita’s and the pain is through the roof. Too much caffeine, pain is through the roof. Chocolate gives me migraines. Doritos’ (before I quit them) gave me a headache and made me fall asleep hard after 15 minutes. Figure it out, once you do modify or stay away. 
  • If your always in pain after sitting in the rocker, move to the couch, bet pillows or pads.

Since I have implemented these AND learned to let go of the guilt associated with it, I have been less stressed and sometimes even laugh at things while other people are stressing out. Not to be disrespectful but I say “There’s nothing you can do so don’t freak out. Take that energy and put it someplace else!”
There are other things you can do and many different ways to do it but you MUST believe that you and your health are important enough to decide to make the changes, and stand your ground. It’s a process and you can have setbacks. Setbacks are okay. Just keep going.

 YOU ARE WORTH IT!!

Monday, May 27, 2013

God didn't give me Fibromyalgia

"God doesn't give you more than you can handle"
I just saw one person post this to another person who was sharing some bad news of new diagnosis'.
Although it is a standard and sincere response to bad or overwhelming news, I think it's not true. In fact there are plenty of people who can't handle it and end up on heavy meds, committing suicide, divorcing and isolating friends and family, lose their job and have no money for medical bills and become crippled by illness or trauma,  and yes, some just go crazy. Some people really go crazy. And that is life.

You hope you are strong enough, you hope there is a reason, and you have faith that you will survive, come out stronger and even maybe learn something. So to say "God doesn't give you more than you can handle"  I think is not something I personally want to hear.
Tell me please that you think I am strong enough to get through it.
Tell me you think I am smart enough to figure something out. Tell me you think I am determined enough to find a better way                            and maybe teach somebody else something useful along the way. Ask me exactly what I want to hear from you that will help, and then say that. 
Because I do believe in God, but I do not believe he gave me Fibromyalgia

Wednesday, January 16, 2013

"Keep Moving Forward" and Don't Stop Dancing!

I wanted to share this short video clip I took this morning in the kitchen. It is dark and snowing, the kids have no school. I was thinking about my aching body and all the things I have to do, plus the things I wont get done because kids are home. I happened to look up at the window where I have 2  cheap dollar store "SOLAR POWERED" sunflowers. My pitiful attempt at making the kitchen not so depressing first thing in the morning. Bear with me I have a point here!

Sunflowers

If you notice one is moving a lot, and the other..not so much. The one on the right is facing outside. The on the left is facing the kitchen. The one facing the window is dancing it's little heart out even though to MY eyes, there is clearly no sun to be seen today. Ah hah...see where I'm going with this?!

I think of us with chronic pain and how we cannot see the sun some days. We cannot feel the sun some days. It's covered by clouds, snow, or rain is blocking it out.. It's dark and cold, outside and in our heart. It's  painful and exhausting in our bones and in our daily life, and therefor we are tempted to stop moving. Stop "dancing".

Even when we can' see it, we have to have hope that things can get better and "Keep Moving Forward."
So take a lesson from a little sunflower.
Just face the sun. Face the day. Face your life. Don't turn your back on any of it because even if you can't see it with your eyes, and you may not be able to feel it on your face, the sun is there. Every day. Without fail. And if you face it, it just might help you to dance a little!


Sunday, January 6, 2013

Poetry by Fighters!

I have wondered when I write why I think of things to say that would never come out in daily conversation. Why some words and phrases are only used when writing deepest thoughts in this form of creative expression called poetry  Will people think you odd, weird, emotional, out of touch? Maybe. If you put it in a poem are you now a creative genius? Maybe. Sometimes pain and suffering can bring wonderful things out of our souls just as happiness can. Sounds crazy but I believe its true. That.s why we have books, music, movies and poetry all born of pain, loss, despair, struggle and suffering. I asked members of my Fibromyalgia/CFS Fighters  Facebook page for poetry submissions  I only  received a few but they are great ones, pulled a couple off a fibro site and gave them their credit and although I am late in posting because I had so much on my plate, here they are. Thank you for sharing you guys!



Terri Been
Hi....My Name is Fibromyalgia, and I’m an Invisible Chronic Illness.
I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.  
Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else
feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons:
That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!
I hear you‘re going to see a doctor who can get rid of me. I’m rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not
taken as seriously as you feel when you cry to the doctor how debilitating life is every day.  
Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or
“Well, remember, you can’t do the things you use to do 20 YEARS ago“, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them
understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing
with me is with Other People With Fibromyalgia.

"It's going to be okay" ~ Anonymous

Dream your dreams beyond another unknown tomorrow. It’ll be okay…. Dream what we all believe to be awaiting us as we go yet another step farther. It’s okay…. We can then wait for our destinies to lead us into something that has to be so much larger. It‘ll be okay…. We will then find light and existence waiting for all of our spirits, if we can just co exist with those all around us. It’ll be okay….

For we know not of the dreams that are still yet to be recognized and then in our time re-discovered. It’ll be okay…. Deep within our hearts that have become over the years so empty and intellectually shallow. It’ll be okay…. Then finally finding ourselves living by life‘s endless rules that seem to eventually always have to be followed. It’s still okay….

While living within the memories being performed by the life you take for granted. It’ll be okay…. Living as though we are all guaranteed to be alive through out the end of each and every day. It’s still okay…. It will only allow you more time for those dreams to finally have their own way. It’ll be okay…. So as you close your eyes tonight, just know that you need not be afraid. It’ll be okay…. 

Tonight is just the ending to a once lived moment we like to call today. It‘s okay…. So leave behind all of your unnecessary pain and just do your best to try and refrain. It’ll be okay…. These new feelings of ease are yours to keep if you choose to let go of all of your sorrow. It’s going to be okay…. Which means you won‘t have to steal them anymore, they are now yours to permanently borrow. It’s still okay…. 

Say out loud what you feel as though you must say. It’s okay…. The sun won’t forget your eyes tonight as you slowly drift away. It’ll be okay…. Tomorrow you will once again look back upon this illusion we now call today. It’s going to be okay…. So let it remain as just another image within a meaningful reflection of a once lived yesterday. It’ll be okay….
What more do I have to say, it‘s time to once again pick up that ball and re-learn how to play. It’ll be okay…. Don’t let life’s mysteries and miseries stand in your way. It‘ll be okay…. Just roll up your sleeves and don’t let anything get in your way. It‘s going to be okay…. Just smile and always look away. I told you it would be okay….




Darkness to Light
Falling down, too weak to fight
Feeling blind, can't see the light
Always walking in dark shadow
Never seeing the sun's warm glow
Life has long passed me by
Too overcome to even cry
Never living my dreams
Only creating silent screams
Someday maybe life I will live
All past hurts be able to forgive
Forget about all the past strife
Able to get on with my life
Once more the sun will shine
Walking in that light, so divine
A glory to behold
The wonder that is me extolled
Tammi Harrison



Annette
I Wear A Purple Ribbon
Fibromyalgia

A silent killer with no face.
A thief within the night.
A constant battle for my life
A bitter evil fight.

The scars remind me of the day
It knocked at my souls door.
It tried to rob me of my strength
It left me on the floor.

To survive, I had to sacrifice
My legs and even my back
It showed no pity as it snatched
These things without a care.

I started to give up my fight
I felt I could take no more
Then God reached down and
Gently picked me up off the floor.

He wiped my face and blew my nose
Just like my mama use to do.
He said don’t cry my child
For I have things in store for you.

I did not bring you all this way
to leave you high and dry.
I love you and you are my child
So hold your head up high.

There is nothing that I cannot fix,
No pain I can’t erase.
Have faith and know that I am here
There is nothing you can’t face!

So then I threw my hands up high
And gave God all his praise!
For my soul has been uplifted
And my SPIRIT has been raised!

I’ll fight this fight with
Fibromyalgia
And I know I will be fine.
For God said it and I know its true,
That VICTORY is mine!!


Cori
You torment me from deep withinAll the way to the outside of my skin
You scrape my bones and pull my hair
I cannot see you but know you are there.
You keep me awake at night
And make my muscles painfully tight
It’s you that I fight

Fibromyalgia this painful disease
Someone find a cure please

You make my fingers cramp in pain
Oh yes you are the one to blame
My minds a blur I can’t even speak
You are the one who makes me so weak
I try to walk, to stand, to play
Only to have to sit or to lay.
I’ve suffered in silence for to long this time
I don’t care who hears me whine

Fibromyalgia is ruining my life
Good thing I have the will to fight

You cause me unimaginable pain and tears
How can I go on like this for many more years
I take my pills but they don’t work anymore
My whole body is screaming and is still so sore
I lose things, I forget, I cannot understand
Sometimes I feel my mind is in another land.
Please have patience with me
I suffer with an invisible disease.
I may look okay
But today is not a good day
This morning I couldn’t walk,
Tonight I won’t be able to talk.
I get up each day
And fight and struggle to find my way
I try so hard
But feel as though my body is under bars

Fibromyalgia is making me feel this way
Someday there will be a cure and I won’t have to live this way for one more day


Sweet Darkness
Life's tuff deal with it
That's what I hear from you every day
Well I'm sick of dealing with this shit
Just take the pain away
Can't deal with this anymore
Tired of living with it
What else could be in store?
Gonna give up say Fuck it and quit
Why should I bother to care
Why punish myself by going on?
Everything's nothing but despair
Oh God I don't want to see another dawn
Not if life has to be like this
Just let me fall into a forever sleep
Let me fall into the dark abyss
Held forever in it's sweet keep
Tammi Harrison

Tuesday, December 18, 2012

Things people without chronic pain take for granted

We know we have pain, we know people who don't have pain can't understand fully the depths to which it reaches. Instead of complaining about all the things we have to rearrange, suffer through, plan for and deal with..I have decided to put it in the form of a list that's easy for people to read. And those of you who don't suffer I ask, can you deal with this?


  • Changes in eating patterns, too much or too little. Weight gain and weight loss. New food sensitivities causing stomach pain, headaches, rash, muscle pain. Never knowing if what you are eating will make you worse.
  • Changes in sleep patterns. Never being able to fall asleep at night no matter what you try. Being tired all day long no matter what you try. 
  • Lack of sleep impairing your judgement and mental focus.
  • Major differences in daily life include:
  • Cooking and Cleaning.
  • Talking on the phone
  • Driving
  • Showering: Even water hurts your skin, holding your head back to wash your hair can be impossible. 
  • Going to the bathroom
  • Carrying heavy laundry baskets
  • Pushing heavy carriages in the store
  • Reaching for things or stretching causes a charlie horse, muscle cramps, or muscle spasms.
  • Bending over to tie shoes or put socks on hurts or pulls muscles
  • Having muscle pain that never ends day in and day out. Sometimes so severe it cripples you and confines you to the bed, couch, or house. You cry, you ache, and beg and plead and pray for it to end and it never does. 
  • Trying to find a doctor educated enough to help you rather throe meds at you. Or worse have to go from one to another because they don't believe you at all.
  • Unable to sit for long periods of time. Playing  on the floor or doing homework with children, hobbies, even watching tv becomes a painful task
  • Unable to stand for long periods of time. 
  • Unable to walk around for long periods of time.
  • Work becomes compromised. 
  • Relationships become strained.
  • Day trips, vacations, live shows, walking around the mall, even grocery shopping have to be limited and planned.
  • Constantly trying new medications that don't work. When you find one that does work and you start to feel better and have relief it stops working and you have to go back to try something new. 
  • Forgetting things in mid sentence, people names or where you were driving to.
  • Taking one pill for pain, another because that makes you nauseas, another because that makes you tired, and another because that one causes headaches and ...really do I need to go on?
  • More prone to injury and illness, and slower recovery time afterwards.
  • Symptoms get worse, then better, then worse and there is no predictability to it other than being unpredictable
  • Never being able to get treatments that may help because they are too expensive and insurance doesn't cover it.
  • Exercise habits change. Your body can no longer do what you want it to. You push and push because you have the drive and determination and then suffer for 3 days afterwards because it causes your body to flare. Some days you can run a mile, and some days just getting up the stairs gets you winded and causes back pain.
  • Bright light  and loud sounds hurts your eyes and head
  • Pulling muscles at random times for no reason. Getting bruises easily even when you don't remember bumping into anything.
  • Feeling good and doing things you have neglected, only to be in severe pain because of it.
  • Being in relentless pain, your body is on fire, and no one can even see it on the outside.
  • Knowing there is no cure and no treatment 
  • Psychological distress
  • Stress
  • Depression
  • Frustration
  • Guilt
  • Impaired memory
  • Anxiety
  • Headaches/migraines
  • Digestive disorders
  • Muscle aches, pain and stiffness and burning
  • Weakened immune system
  • Too tired or too painful to enjoy sexual relations
  • Being misunderstood
  • Financial devastation
  • Lack of interest in things or people
  • Heightened sensitivity to light, sound, taste and textures.


So I am going to ask you again. Can you deal with this?