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Monday, May 19, 2014

Just Another Manic Sunday... Monday... Wait. What day is it?

I admit it.  It's all my fault.

 
www.dmkilgore.com
D.M. Kilgore


I have no one to blame but myself.  Or do I?

Every year when we finally decide to uncover our pool the weather goes from hot to not.  Within minutes of folding the cover up and storing it away, those big, gray storm clouds roll in and bring an unexpected dose of cold air with them.  And, in my case, a dose of unwelcomed pain and problems.

It's like some kind of secret spy notifies Mother Nature, "Oh look! They want to swim!  Quick! Turn the COLD back on!"  (Evil Laughter) 

Well played, Mother Nature.  

 

www.dmkilgore.com
D.M. Kilgore

Not funny at all.

I find no humor in this kind of weather shift because I have Fibromyalgia.  Now, you either know what that is, don't know what that is, or don't believe in it.  If you know, I hope it's not because you have it.  I wouldn't wish it on anyone.  If you don't know, Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.  And that's just the Cliff-Notes version of the condition.  If you don't believe in it, you might be a doctor.  Believe it or not, there aren't many out there that actually recognize and attempt to treat this terrible condition.  Thankfully, I have a doctor that recognizes Fibro, and understands the link to CFS (chronic fatigue symptom) which was once known as SCEBVS (Severe Chronic Epstein Barr Virus Syndrome- yes, the EBV that causes Mono.  Which I had a horrible bout with when I was 15 years old). 

Anyhoo, back to that evil witch Mother Nature. 

The weather, when it goes suddenly cold-wet-and-crazy, sets off the dreaded "fibro-flares". 

credit: pinterest


The weather here went crazy Friday.  The day we uncovered our pool.  Go figure. 

I'm feeling it.


www.dmkilgore.com
D.M. Kilgore
Friday Night: I could not sleep because of deep muscle pain that would not let up no matter how many muscle relaxers I downed.

Saturday: I felt awful all day.  Headache, stomach ache, muscle pain, and fatigue.

Sunday Morning:  Instead of hopping out of bed and heading to church... I rolled out of bed moaning and groaning with a horrid headache, muscle aches from head to toe, a sick tummy, a low grade fever, and glands so swollen I couldn't turn my head. 

Now, it's Monday (I think) and even my hair hurts. 

No, it's not the flu/Lyme's/all in my head.

This is life in Fibroland.  It comes, but it never really goes.  It's always there... lurking... just waiting for any little thing to set off a worsening in the multitude of unpleasant symptoms.   

credit: pinterest
You can't see it, but I sure can feel it.  I understand why others might look at me, see that I look "fine" and assume that I'm either lazy or crazy when all I want to do is go back to bed.  No, I'm not lazy, manic-depressive, or bipolar.  I'm living with Fibro and I'm fighting a daily battle that you can't see.  Sometimes, just breathing is the best I can do.

There are treatments out there, ways to help manage the pain and other symptoms, but so far, there is no cure.  All of us fibro-warriors are like living experiments in agony.  We go from doctor to doctor, prescription to prescription, treatment to treatment... seeking out anything that will ease our suffering.

All fibro sufferers are fighting the same dreadful diagnosis, but we are also all different, and might be fighting a different set of symptoms.  Treatment wise, what works for me, might do nothing for you, and vice-versa.  It's a game of Russian Roulette. 

It's a club no one wants to be a member of.

 

The password is: 
There's no club, you moron.


If you have fibromyalgia, you're not alone.  There's a great big cranky group of us out here-- nearly 5 million just in America!

And, if you aren't a sufferer (I'm praying you never will be), now you'll know the basics and understand that we really are sick, even if we look "okay" to you.  It's like that whole "never judge a book by its cover" thing.  You cannot always see what's wrong on the inside by looking at only the outside


We might look great from the outside,
But if our outside reflected what was going on inside...

 

Night of the Living Dead (1968)


What you can't see is:
  • Pain all over
  • Fatigue
  • Sleep difficulties
  • Cognitive and memory problems (“fibro fog”)
  • Morning stiffness
  • Muscle knots, cramping, weakness
  • Digestive disorders
  • Headaches/migraines
  • Balance problems
  • Itchy/burning skin
  • Irritable bowel syndrome
  • Painful menstrual periods
  • Numbness or tingling of hands and feet
  • Restless legs syndrome
  • Temperature sensitivity
  • Sensitivity to loud noises or bright lights

That's a lot to deal with every day, don't you think?


credit: Emily Brewer
Don't judge us. 

Treat us kindly. 

We smile through the pain, stretch through the stiffness, stumble through the brain fog, compensate for sleepless nights with extra coffee, hobble along, seeking a bathroom or bottle of Advil. 

If you see us scratching our skin off, don't worry... it's not contagious.



My advice to others:  

Exercise. 

I have found that exercise is my friend (even though no one who has the above symptoms really feels like exercising daily).  If I go for my daily walks, my pain is better, as are most of my other symptoms.  I make myself go, even when I don't feel like it, because I know I will feel better if I just do it.  Lately, bone spurs in both of my feet have kept me from walking.  My fibro is definitely worse now that I've had to side-line myself.

Drink Water.

Drinking lots of water (at least 64 oz a day) also helps me.  I don't drink anything but water, except for a morning cup of chai tea.

Eat right.

Cutting out all crap from my diet (especially MSG and artificial anything) helped.  I had to figure out my food-triggers, which took time, but for me most dairy, grains, and  high sodium content set off flares.

Sleep.

Get enough sleep for your mind and body (this might vary for you, but my magic number is seven and a half hours of sleep-- not a minute more or less). 

Avoid Triggers.

Unfortunately, you'll learn what yours are the hard way, that's how it works.

Maintain Your Temperature.

Stay cool or warm, but never hot or cold.   I simply cannot tolerate extreme heat or cold.  If I get too hot, I'm wiped out for the rest of the day (sometimes more). I also cannot sleep if it's too hot in my room.  Likewise, if I get too cold, I ache more.  I keep a pair of socks, a sweater, blanket, and Snuggie handy-- even in the summer.  I often wear socks to bed and sleep under a thick blanket, but with a fan blowing on me and the AC set on ice-ice-baby.

Trial & Error Treatment.

You are going to have to try things.  Many things.  Some will work for you.  Some will not.  It's a long, stressful, and often frustrating process.  Deep tissue massage and ultrasound therapy are among the best treatments I've found (which my insurance will not pay for).  Long hot soaks in the tub, every night, are my saving grace.  I'm currently on several vitamins and supplements, as well as using essential oils, and taking prescribed medications (most of which do nothing).  What works for me might not work for you.  Again, it's all trial and error.


And the  # 1  piece of advice I can give you is:

LISTEN TO YOUR BODY!
NOT YOUR BRAIN.  NOT THE WORLD.

 

Your body is going to give up on you way before your brain is ready to call it quits.  Your brain is going to tell you to just finish moving the furniture, you're almost done.  Your body is going to warn you when it's had all the fun it can stand.  Listen to your body.

You will hear a lot of, "But you look fine...".  That's okay.  Remember that others cannot see your struggle or feel your pain.  They only know what they see.  From the outside, fibro doesn't look so bad.  Smiling through the pain is one thing, subjecting yourself to more suffering just because others cannot see your struggle is another.  Listen to your body.

credit: FibromylagiaTreatment.Com
You don't have to go to bed forever and just give up on having a life, but you do have to listen when your body really needs a break.  Don't be defeated, but do be smart.  You're going to battle this monster every single day for the rest of your life.  Some days you will win the battle.  Some days you won't.  Just remember, only the battle is lost, not the war.  You will rise tomorrow, and you will fight again.  You'll have good days.  You'll have bad days.  Make the most of the good (but don't over do it) and take the bad in stride.  Your body will need to recuperate and recover, whether your brain likes it or not. 

 A ticket on the Fibro-Express includes mandatory bed-rest days. I highly recommend you spend as much as you can afford on a bed and mattress your body loves.  (I've made this a bit easier for you, if you want to take a look at this:  Mattress Mania.)

credit: pinterest
I have my perfect bed, and I save a special selection of books I haven't read and movies I haven't seen for my super bad days.  I go to bed, get as comfy as I can, and if necessary I simply remind the world that I have a condition that requires me to fight every day and today, I need to recover.  No warrior can fight daily if they don't take time to prepare for battle now and then!  My body reminds me when it's time to prepare.  My body tells me when it's time to recover.  I'm learning to listen to my body. 
Not my brain.  Not the World. My body.


As for the weather...  I'll take the blame for spurring this wacky-weather.  I apologize to my fellow fibro sufferers.  I would promise to never uncover the pool again, but swimming is very good exercise for those with fibro.  Bwahahaa!  My husband says this is "blackberry winter", and since I love blackberries, I'm going to call that a silver lining and just roll with the punches.  I see the sun is trying to come back out now.  The meteorologists say the warmth is coming. Hang in there!

Tomorrow has a 50/50 chance of being a better, brighter day in Fibroland.



www.dmkilgore.com
D.M. Kilgore
Greetings From Fibroland
 P.S.  I wrote this blog from my recliner.  

I'm covered head-to-toe in Icy-Hot gel...
and a fashionable pink Snuggie.  
I'm sipping hot tea, and I've taken my Robaxin.
I'll be heading back to bed soon.
Let the world say what it will.


A nap is imminent.





Do you suffer from Fibromyalgia? ♦ 

credit: Alice Grebot
Do you have any hints, tips, tricks, or words of encouragement to share with others?  
Would you like to leave a message to the world that doesn't understand?
Have something to say to those that don't believe it's real?  

Today, my blog is your soap-box.  

Comment below.  
We're all in this together.

7 comments :

Julie W. said...
This comment has been removed by a blog administrator.
Julie W. said...

I have it but my fibro fog and my stiff fibro fingers would make no sense if I tried to comment. I am still trying to work my way out of bed. It hurts too bad and on cool mornings it's almost impossible.

LaDonna Cole said...

Well, I suffer from all those symptoms, but what I don't have is a diagnosis. I don't want one. There is nothing they can really do for you so all a diagnosis does is increase your insurance rates, make medical professionals look at you with the ah hummm look and ruin your credibility and keep you from searching for other possible reasons for the symptoms. I sympathize with your pain. So sorry you are having to deal with it.

DM Kilgore said...

I understand. My fingers were tingling while I was typing... and not in a good way! ;)

DM Kilgore said...

Great points LaDonna. A diagnosis is often an "answer" that answers nothing and only raise more questions. That "ah hummm" look is a killer, is it not. Blah. Hate that. Just tell me you think I'm crazy, then point me to the division of "let's pay you for your crazy" please! Bwahaha!

Lisa Byrd said...

Wonderfully put Donna! I totally understand the recovery days. After working two days in a row, it is a day in bed for me! Three in a row? Just cover me up and kill the lights, I'll be out when I can - LOL. Thank you for writing this and helping bring awareness to the world! Love you! Lisa

DM Kilgore said...

Love you too Lisa! I hope it will help others to understand we're all in this mess together! ;)

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