Can You Still See Me?

Don’t treat me like I’m not sick
And then maybe I won’t act like it.
This crap is getting deep
And I feel like I’m knee deep in it.
I’m sick and I refuse to deny that.
This illness is a part of who I am now,
And I can’t change that.
Denying my illness is denying me.
I’ll no longer try to explain
How sick I really am,
Because it’s like explaining
The clothes I wore today…POINTLESS!!!
I know now you’ll never understand
Because you’ll never try to.
I guess this is just how it must be,
But I’m still me deep down inside,
Can you still see me?

Smiling Through the Pain

The pain is annoying as hell right now, but I’m happy to announce that I still have a smile on my face.  I love when I’m strong enough to smile through the pain and I despise when I let the pain get the best of me.  By tonight I’ll be in that situation.  I’ll be exhausted and too frustrated to deal with the pain anymore.  I’ll get mad and I’ll probably cry, but I know that if I’m blessed with another day then when the morning comes I’ll be strong enough to do it all over again.  This isn’t the best life, but it’s mine and even though my illnesses totally suck I’m still able to live and I can’t ask for more.  Anything past living is a special bonus and I’ve learned to take nothing for granted. 

I used to say that I’m not living…I’m just surviving.  Some days that’s still true, but things have changed and I’m starting to feel like I have a place in this world again.  I have a boyfriend who loves me unconditionally, I have friends and family who are slowly starting to accept and understand my illness and I’m getting that “I want to conquer the world” feeling back.  Support and understanding changes everything in the life of someone with a chronic illness. 

Anyways I think I have rambled on enough.  I hope everyone is having an awesome day.  Gentle hugs and lots of love.

Fighting that Feeling of Defeat

Life has been slightly more difficult lately, not bad, just difficult.  The illnesses have gained up on me and the fatigue and pain is overwhelming at times.  I’m close to feeling defeated, but I keep fighting.  No matter how tired I am I try to accomplish something.  It helps keep that feeling of defeat at bay for a little while longer.

I have so much I need to do, but my body feels heavy and my muscles are so tight that I’m afraid to sneeze because it hurts like hell.  All day today I’ve tried to put as many positive thoughts in my head as possible, because I have to keep my mind strong, because my body is struggling.

I’ve felt like I’ve been in this slump for way too long, but I think back to this time last year and I was feeling about the same way.  There always seems to be a strange pattern with illnesses like Fibromyalgia.  I understand it a little more now, but so much of it is still a mystery.  That’s what makes it so hard to deal with.  I’m the type of person who wants to know details about how things function and how things work.  I’m the same way with my illnesses, especially Fibro.  There are so many questions that have no answers.  That alone drives me crazy and I’m sure I’m not the only one who feels that way.

I’m probably rambling at this point.  I’m surprised I can compose a complete sentence.  I hope all of you are as well as possible.  If you’re not and want to rant about it then please feel free to do so here.  Sometimes you just have to cry, yell and scream to feel better.  There’s no shame in that.

Gentle Hugs and Lots of Love!

Fibromyalgia and TMJ Disorder

I’ve noticed that when the pain is really bad, I do everything I can to make sense of it.  I figure if I can make some kind of sense of it then I can do everything possible to try to make it better.  I’ve had issues with TMJ disorder for about a week now.  The pain has been off and on and is driving me crazy!  I’ve been taking Ibuprofen regularly, applying ice and heat and I’ve even tried my TENS.  Nothing is making it go away.  I’ve already threatened to cut off half of my face and my boyfriend keeps telling me that it’s not a plausible way of dealing with it.  It’s just been on the left side this time.  Anyone have any tips for pain relief before I become even more insane?

The World of the Chronically Ill

You take everything that is right in the world, everything that makes sense and you turn it upside down and scramble it up.  This is where I reside.  This is the world I live in.  This is what a chronic illness does to you.  There is no benign chronic illness.  It changes your world.  It changes you.  It changes everything.  Every day is a challenge and some days are a full blown war.  You hang on to every good day you’re blessed with so that you can survive the bad days.

Some days you can smile through the pain and other days the tears just won’t stop.  It never gets easier, but slowly you begin to adapt and you learn to deal with it.  Occasionally you have days where for a moment you forget you’re sick.  You do a fun activity and laugh and carry on and for that moment, no matter how small a moment it is, you feel normal.  Those moments are priceless, but most of the time they are few and far between.

You wake up every morning determined to conquer the world, but the truth is that if you’re able to shower, clean the house and cook dinner, you feel accomplished.  Most of the people in your life think you’re just lazy, but they don’t see when you cry because you can’t do all the things that you want and need to do.  You were supposed to do that favor for a friend, the house is a mess and the laundry is piling up and you’re in so much pain that you can’t think straight.  You want to do everything, but you’ll be lucky if you can accomplish just one of those things.  It breaks your heart, but you can’t change it.  The illness demands attention and if you don’t give it that attention you pay for it in ways that are critical to your well-being.

Residing in this world causes you to lose focus.  You wake up one day realizing that you’re barely surviving, much less living.  This has to stop.  Although life is much harder now, it should still be lived to the fullest.  That person we used to be is gone, but the person we are now is even better.  We’re fighters and we take nothing for granted.  We know what real pain is and we survive it.

Insomnia and Pain

The frustrating combination of insomnia and pain has me in a really bad mood today.  I think I may have gotten at least 4 hours of sleep, but of course those 4 hours were filled with crazy, stressful dreams.  I feel like a zombie and I have so much to do today, which includes keeping up with my writing.  Writing while mentally and physically exhausted is difficult to say the least.  The words just disappear and the black wall goes up.  I think it took me 3 minutes just to write those two sentences.

Days like this make me despise being sick and make me angry to think of all the people who don’t believe Fibromyalgia is a real illness.  We struggle every day just to try and live a life that is considered normal, while so many people think we’re taking the easy way out.  Living with any chronic illness is NOT easy and it doesn’t give us an “excuse” to be lazy because when you have a chronic illness, most of the time, you don’t feel well enough to be lazy.  Most of the time there is no comfortable and there is no rest.  It’s just a vicious cycle of pain, exhaustion and frustration.

Sometimes I wish my life was a little easier and that I could be a little more “normal”, but this fight has made me strong.  That strength is why I got out of bed this morning and why I’ll I get everything done that I need to do today even though I know tonight may be another frustrating night of pain and sleeplessness.  I’ll keep on keeping on, because that’s what I do and I hope all of you are able to do the same.

I hope everyone is having a good day/night.  *Gentle Hugs and Lots of Love*

My Handy Dandy Heating Pad...What Can You Not Live Without?

My pain started when I was 10 years old and ice was always my choice to relieve the pain.  I had at least 10 ice packs at all times. I hated heat and the way it made me feel.  Ice just seemed more soothing.  It wasn’t until my pain levels increased by 10 that I started turning to a heating pad for relief.  One night after hours of pain, I was desperate to make it stop so I tried the heating pad and it has saved my life.  I still don’t like the way it makes me feel because I do have a heat intolerance, but as long as the AC is on I can handle it and it does make the pain a little more bearable. 

If I know I’m going to be away from home for an extended period of time I always make sure I take my heating pad just in case.  Comfort is a necessity when you have a chronic illness. I will go out in my pajamas with a bag full of my medications, extra clothes, heating pad and whatever else I may need to get through the day, and I will have absolutely no shame in doing so, because all that matters is I’m still functioning and even more so I’m still living.

What can you not live without?

The Fight to be "Normal"

I have managed to take a shower and get dressed before 3, which leaves me with 3 whole hours to clean and do laundry before the boyfriend gets home.  I think today may be a good day!  I don’t know that if this would have happened if I wasn't expecting company this evening, but I’m still getting things done either way.

This is something only the chronically ill would understand.  It’s the everyday fight to function like a “normal” person.  To a “normal” person, this seems like laziness and to tell you the truth I fight not to feel this way myself.  It’s hard, even devastating, to live in a body that can no longer do what you need it to do.  We've all heard that annoying phrase, “You just have to push yourself a little harder”.  We begin pushing ourselves the minute we get out of bed just to do what’s considered “normal”.  We get to the point where there’s absolutely no “push” left.  That’s just how it is.

Even though I know I’ll never be, I still strive to be “normal”, because I want to fit it and feel like a productive person.  I despise days I have to stay in bed.  I despise a lot of things about being sick, but I won’t give up.  Normal or not, this is me and I’m not only going to fight and survive, I’m going to live.

Fibromyalgia Basics

As many as 12 million Americans suffer from a pain no one else can see. They are called lazy and sometimes crazy because no one understands what they are going through. It’s overwhelming and very lonely. It’s Fibromyalgia. Fibromyalgia is a chronic arthritis-related syndrome and while it affects a lot more, only 3.7 million Americans have been diagnosed with the condition. Unlike arthritis, Fibromyalgia affects the muscles and ligaments, not the joints. Fibromyalgia has also been referred to as fibrositis, chronic muscle pain syndrome, psychogenic rheumatism, tension myalgias, fibromyositis and myofacial pain syndrome. 

The symptoms of Fibromyalgia are multiple tender points on the neck, shoulders, sternum, lower back, hips, shins, elbows and knees, fatigue, sleep disturbances, body aches, reduced exercise tolerance, chronic facial muscle pain or aching. Other symptoms may include headaches, irritable bowel or bladder, temporomandibular joint disorder, pelvic pain, noise sensitivity, temperature sensitivity, restless leg syndrome, depression, anxiety, numbness or tingling sensations in hands and feet, difficulty concentrating, mood changes, chest pain, dry eyes, skin and mouth, painful menstrual periods, dizziness and anxiety.

It can take up to five years for a Fibromyalgia diagnosis to be made because it is so misunderstood and there are no tests that can diagnose it. There are 18 tender point sites on the body and a diagnosis is based on having at least 11 of these tender points. The tender points are located in the neck, shoulders, chest, rib cage, lower back, thighs, knees, arms/elbows and buttocks. Tests are done to rule out similar conditions such as Ankylosing spondylitis, Lupus, Carpal tunnel Syndrome, Multiple Sclerosis, Polymyalgia rheumatica and Restless Legs syndrome.

Fibromyalgia affects more women than men and usually develops during early to middle adulthood. If you have a family history of Fibromyalgia or if you have a rheumatic disease such as Lupus or Rheumatoid arthritis then there is a higher risk for developing Fibromyalgia. Other possible causes include sleep disturbances, injury, infection, abnormalities of the autonomic nervous system and changes in muscle metabolism. Ninety percent of Fibromyalgia patients have severe fatigue and sleep disorders.

Inspirational Quotes

We all need a little inspiration sometimes. I know I definitely do. Here are a few of my favorite inspirational quotes.

 

Happy are those who dream dreams and are ready to pay the price to make them come true.
Leon J. Suenes

If you do not hope, you will not find what is beyond your hopes.
St. Clement of Alexandra

Fortune favors the brave.
Publius Terence

He who hesitates is lost.
Proverb

Our greatest glory is not in never falling but in rising every time we fall.
Confucius

Nothing great was ever achieved without enthusiasm.
Ralph Waldo Emerson

For hope is but the dream
of those that wake.
Matthew Prior

Go confidently in the direction of your dreams. Live the life you have imagined.
Henry David Thoreau

All men dream but not equally. Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity; but the dreamers of the day are dangerous men, for they may act their dream with open eyes to make it possible.
T.E. Lawrence

I Can't Blame the Fibro!

Holy hell I haven’t been here in a while!  I’m so ashamed!  I could blame it on the Fibro, but deep down I’d know I’d be lying.  I can make all the excuses in the world, but none of them would justify my lack of writing over the last few months.  I’ve decided that I’m going to stop complaining and feeling bad for not writing and just start writing again.  So the next few days I’m going to write about anything and everything just to get myself back to the writing mentality I used to have.  Writing is my life and I haven’t been living.  It’s been like my brain got stuck in the off position and every time I thought about writing all I could see was a black wall of nothing.  Maybe the pain is part of the reason, but not the whole reason by any means.  You can’t fulfill your dreams by sitting on your butt, watching a million episodes of Law & Order.  All that gets you is a sore butt and wicked nightmares…really wicked nightmares!

I hope everyone is as pain free as possible. Gentle hugs and lots of love!