We Dont Need Permission to Voice Our Pain!

I dont know about you but I have long since struggled with the "acceptance" part of my condition. I mistakenly thought accepting it would somehow cement the fact that I was weak, less capable, less important or just "not normal". That if I accepted it all of a sudden a right light would be shining on me and everyone would know I am no longer the person I used to be, or I can no longer do all the things i used to do. Well as you may also have also seen in an earlier post (one of my favorites) I came to terms with that aspect. As I hope everyone does at some point.
 But, and this is a very big but, part of me has still been off. I talk to myself, I question myself and its taken me a while to figure out. But I have waiting for permission to be sick. I have been waiting to hear from a mystical unicorn that its ok to be sick, tired and angry. That its okay to sleep, cry or go slow. I needed some ONE to listen to my ramblings without judgment, and since I don't/didn't think it's truly possible NOT to be judged I have always been holding back my thoughts feelings and pain...just a little, while I wait. Wait for something I don't even think can happen, so I have been left perpetually feeling vexed.
 I have exhausted every avenue, done everything I was told, researched until my eyes bleed, exercise, eat right, try everything under the sun to manage and even accepted, fight or give into my body,  and still feel something is not right..it required further investigation.

My investigation has lead me to my epiphany, that I am looking for permission. Permission to say and feel everything I have been holding back. I talked to myself in the car for a very long time and said all the things I would NEVER dare to say out loud (for various reasons) and it felt great. The world did not end. No one fired me. No one judged me. I was not asked for a divorce. No one died.
I thought OH HELL if I heard this from any normal person I would gently suggest they seek immediate counseling. But  pain changes people. A chronic pain patient can say these things and I would never suggest they were crazy. I would break down and sob because I knew exactly they feel. If we want to get through it, over it or around it we have to VOICE the good, the bad AND the ugly.

If you have ever thought anything similar and were to afraid to say it outloud you might want to try it. Even if no one ever hears it you have every right to think and feel it. No matter how crazy. You know it may be temporary, not true of your everyday nature and you may feel guilty about it but know YOU CANNOT be the only one. And if there is one (me) there is more. And if there is more, its NORMAL!!
It doesn't make you a bad person!!! It makes you human.
So although I love life, my family and friends of course there will times when I dont! Of course! Are you kidding me?! Chronic pain changes EVERYTHING!
That old saying "Pain is Temporary" was not meant for those of us who's pain NEVER, EVER goes away.

It is not temporary when your insides feel like they have swallowed all the pain, from all the souls in, all the world.

No one can tell you what an appropriate response is to that kind of life. 

I don't need permission!This is how I can feel on any given day and I HAVE THAT RIGHT!

Judge me or relate.

On my bad days....

I wish I had no kids. I wish I never had to take care of  anyone at all ever! I resent getting up everyday to pack a lunch. I wish they could put themselves on and off the bus. I wish I had a nanny to do everything for me .

 I just want be left alone. Left to eat or sleep or cry at my whim. Never work, never workout. I pray God will give me a new body. Then I pray someone would die and miraculously switch places with me so I can live out the next 50 years in a "real" body.

I wish my husband would just go to work and never come home. I don't want the guilt of not being a good enough wife. It wouldn't matter if I cleaned or cooked. I wouldn't have to go places I don't want to go, or even be intimate when I am never in the mood anyway. He'd be better off. I wish my friends would go away because they are useless anyway. They aren't there when I need it and they can never understand what I'm going through. 

I wish I was dead. I wish I could disappear. No one cares about my constant complaining anyway.

Sometimes I dont take a shower for days, even weeks,  because I'm too depressed to take care of myself. Sometimes I only do the birdbath because it hurts too much to climb over the tub wall.

I only get dressed up for things so no one things of me as "SICK" when they see me.

or I dont really care to be dressed up all. What the for? Maybe if I look like crap someone will know by the outside how bad I feel on the inside and I'll get some freekin sympathy!

 Rain hurts, clothes hurt, stress hurts, noise hurts, working, smells and washing my hair hurts. Even resting hurts! 

And I dont know how anyone can have pain and despair for the future and still be living.

So again, even when I am generally a positive person, trying to encourage others, and being my own cheerleader OF course there are days when I want to say "F%*@K YOU" to life! F you to health insurance, F you to the doctors office, F you to pain, the dog, the mailman, the tv and anyone else a very BIG F YOU to everyone who asks if I've gotten any better!  Just yell it out, let go and move on And if you need to do the same, go right ahead!  I would not judge you!! EVER!! Because you DON'T NEED PERMISSION!! You earned it by getting up every morning and putting that foot on the floor! 

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!!

We Are Indefatigable!

How can we not be? We get up every day and take on a challenge the not a lot of people around us can understand. Many would ask to be stranded on the top of Mt Everest in the middle of the winter before they volunteered to take this on. We often complain and we are just in doing so. We are tired all the time. We hurt all the time. We have to keep going even when it truly feels like that is not even an option. Someone asked the other day “How do you explain the fatigue from fibro in contrast to the fatigue from a long day at work?” This was (part of) my answer:

“…when it’s fibro fatigue I want to sell my kids, divorce my husband, and sell my soul to be left alone to lay down and die”

So often we focus on the facts, and the facts are painful. There are a lot of things we can no longer do, or do less often. It has changed the way we eat and sleep. It has changed relationships and job status. Everyday experiences are more stressful, less enjoyable and quite often are avoided. It has changed the way people perceive us and even worse it has changed the way we perceive ourselves. It takes over every molecule of our being so it’s only natural to change along with it.

But the reality is we are stronger than these little bodies try to make us believe. I always call Fibro a cannibal because over the years that's the best way I have found to describe it. It eats away at you from the inside out and even gets you to destroy yourself. But you are MUCH stronger. Muscle weakness shmeakness I say. We are not special because we are ill. 

America is supposed to have the best health care, and by study after study you can clearly see we are the sickest and most unhealthy people anywhere.

. How many diseases, syndromes and conditions cause muscle weakness? How many cause unimaginable fatigue? How many change the way we live our lives? How many cause depression anxiety and mind numbing pain? Uuuuummmm a lot! In fact most of them. Even when you see the uber positive, crazy happy people…you all know one at least. They are never pessimistic or negative. The ones who SAY “I didn’t change anything… I am still a great wife, I still work, I still bike and I am kicking this thing in the teeth and I will not be held hostage by this”, well they still have changed. They change what they eat, the medications they take, or treatments they receive.  They change the circle of support they have to incorporate people who are also ill. And yes, that means they have changed. They adapted to the new body and like it or not they reach acceptance with it. You can say you will never accept it or you are still fighting it. I hear it all the time. I did it myself for a long time.

"I have learned nothing

I am not better off

Nothing good came out of this

I am not thankful for any of it

I wish I would die

No one knows what I feel like"

It’s a process, a long ever changing, difficult to master process.

But you did accept it, at least in part. The fact that you looked for answers means you accepted it. Looked for the right doctor, joined support groups and read books on it. You may not be happy about it but you know it’s there and you can’t deny it. But I say we are special, not because we are ill, but because we continue to live with illness. We could lay down and die, take a bunch of pills or  drive that car into the lake. But we don’t. We are indefatigable. 

We wake up everyday and do all over again that which cannot be done. We live every minute with something there seems to be no cure for. We live with people misunderstanding us, judging us, and telling us everything that’s different from what we used to be. We live everyday not knowing what our bodies will do next to betray us next. We live with the side effects and collateral damage. We live. We keep on living. We do anything and everything we can to get through each damned day and we do not rest until these bodies demand we rest, and even then we are NOT happy about it. There is always something else we would rather be doing. ALWAYS! How can that possibly mean we are any less than anyone else? We are not. You are not. I am not. I say it makes us stronger.

This is not a “think positive” speech because either you do, you don’t, or your working on it. But you can train your brain to work with you. To realize you are not less than anyone else. You have adapted to your conditions like the Red Squirrel, Arctic Fish or even us having 5 fingers. Adaptations are to help survive in harsh conditions and that’s what the body is doing. You are tired because your body needs that energy to fight off the invaders! That doesn’t make you lazy! What? You are adapting for crying out loud! Stop thinking of yourself as weak, tired, or incapable! And if you have to fake it till you make it…try this;

• Instead of saying: I was too tired
• Say: I chose not to do that today
• Instead of saying: It hurts too much
• Say: I’ll try it again later
• Instead of saying: I can’t
• Say: I don’t want to right now
• Instead of saying: That always causes a flare
• Say: that’s not the best thing for me
• Instead of saying: I wish it would just go away
• Say: Someday it will hurt less, I can wait
• Instead of saying: Why is this happening to me
• Say: I will learn to listen to my body
• Instead of saying: No one knows what I feel like
• Say: There are a lot of people going through the same thing, boy are we strong

Retrain your brain! 

Dum dum dum dum dum...”I pick things and put them down” HA sorry,  I had to.

If all you can do fake it, then fake it!! You know you have already had a lot of practice faking plenty of things like..oh, lets see, do I need to make a list? Naa, Im done with list making for today. But I will leave you with one, The biggest fake out perpetrated by you and everyone with chronic pain and illness..

"I’m  Fine"

So drop the fine and declare that you are adaptable, capable, and Friggin’A you are 

Indefatigable!!

Don't Worry Be Happy!

Sounds easy when its in a song right? Harder to practice in real life. But you can. You can practice and you can be happy. Not every minute. Its real life for crying out loud..but more than you are now!
Okay this is my speech for the day because I am just so moved to do so..I posted this last night on a couple of my pages, and got little response.

" It is important to remember that your own thoughts and beliefs do manifest themselves physically, and can affect your overall health and mood. 

Start changing your mentality today by starting your day off with positive imagery. 

You can also ponder on the many ways in which you can use your own gifts and talents each day to better the world and create the change you would like to see in your daily life."    

This is true. Like being nervous can cause you to sweat or have to pee! Like getting embarrassed can cause you to blush! The chemical makeup of happy tears are DIFFERENT than tears of sadness! The list can go on..you get the point. There are proven physical reactions to your emotions. 

That reminded me (even though I don't like to make generalizations), it is in fact true, that there are majorities of people in the general populous that act or think a certain way. I have to say not a lot of people are PRO active.This is not for the people who are very engaged in their health and stay informed educated and try everything they possibly can. There are those of us who do EVERYTHING and then some. Kudos to you all!! But there are those who are NOT.  Those who are in real true pain, so bad they can barely function. And do nothing about it. Those are the ones who make me very extremely sad for their future, because they dont even think they  have one. They have lost hope and  are too tired to do anything except breathe.

 They are REactive. And so often I hear "I cant, it hurts, you have no idea..." And I get it. I of all people get it. But you have to be proactive if you want to have success. Especially us with illness. Quit smoking, skip that soda, don't let people get you angry, learn to let it go and take your emotional and mental health into just as much consideration as you would a child who fell off a bike.If it hurts don't give up just do less, do it more slowly or less often, but it will ALWAYS hurt if you don't try at all. Do you need those oreos?  Do you have to get revenge? Do you have to turn your stomach over things you cannot control? Not really. Just realize for everything you do there is a consequence. Weather its an extra 3 pounds, a flare, prolonging an argument with someone, stiff neck or a missed appointment and now you have fee's that you cant afford to pay...there are physical reactions in your body and you need to do whats best for your body. Make the best decision for you and be happy with it. Use your ability for independent thinking and use those emotions to better yourself. Don't take on the negative energy from those around you. Release it back to them.YOU HAVE TO. you owe it to yourself. So walk 5 minutes, stop sucking down the diet soda by gallon, read about emotional healing, take a yoga class, empower yourself to get a new doctor, make that call you have dreading to make, forgive yourself and don't expect perfection, ......DO WHAT EVER it take s to move FORWARD! DO NOT GET STUCK!! YOU ARE NOT YOUR ILLNESS!! YOU ARE SO MUCH MORE!!

"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!

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?