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Tuesday, February 24, 2015

At Least It's Just Fibromyalgia


This post probably isn't going to gain me any popularity, but that's ok.  Those of you who know me, know that this blog has never been about popularity.  It's about speaking my mind concerning Fibromyalgia and other chronic pain and fatigue illnesses, no matter the outcome.

The friend of a friend said to me recently that she heard I have some health issues.  I replied yes, that among a lot of other things I have Fibromyalgia.  She was silent for a minute and then she said "At least it's just Fibromyalgia.  It isn't like it's something that could kill you like cancer or something."  Without missing a beat I looked her directly in the eye and replied with "I'd rather have cancer."

Eyes wide and mouth gaping open she was stunned into silence for a few minutes.  When she regained her composure she asked if I was serious.  I told her that I was completely serious.  I explained to her that Fibromyalgia is a strange illness, in that it effects people in different ways.  It has varying degrees of implications on different people.  Some people have it enough to notice it and have it be annoying, while others are completely bed-ridden from it.  I've even known of a lady who in a flare couldn't stand up and walk, and had to crawl on her hands and knees to the restroom.

Don't get me wrong, cancer is a horrible monster that causes pain, agony, and destroys lives and families.  I wouldn't wish it on anyone. So does Fibromyalgia though.  With cancer, the pain and agony is going to end.  No if and's or but's about it.  The pain and sickness will come to an end.  Either a person is cured or else they die.  With Fibro, there isn't any end in sight.  It's an entire life stuck in an earthly hell of pain, fatigue, co-morbidities, and sickness. 

In my thought process, I'd rather have the chance of a cure and at least knowing if it doesn't work that my pain will end anyway.  Yes, I'm thankful to be alive but thinking about having to live for 40 or 50 more years trapped in this hell is daunting and to be completly honest, I'd rather not.  No, I'm not suicidal in the least, I just would rather not have to live this way knowing it could be decades upon decades.  

I'm a big quality vs quantity type of person.  If I can't have a good quality of life, than I'd rather not have it span out for decades.  The diminished quality of life that I lead, has much to be desired.  It has tore apart my family.  It's isolated me from friends and family.  It's left me depressed.  The level of pain that I feel with a flare of IBS; a co-morbidity of Fibro, is incomprehensible at times.  My latest episode a few weeks ago left me screaming and my daughter ran into the bathroom just in time to see me pass out from the pain and fall from the toilet to the bathroom floor.  -And I've had four children without any type of pain relief.  I'm not just some whimp!

A couple of nights ago, I sat at my desk with tears running down my face from the pain I was experiencing in my neck and shoulders.  I finally realized that I was sitting with my shoulders pulled up as far and tight as I could.  Although that was my bodies natural reaction to the pain I was experiencing, I knew that it was only making things worse.  It took every ounce of concentration I could muster, to keep relaxing those muscles and allowing my shoulders to go back down to a natural position.

My daughter kept begging for me to make a box of brownies.  Last night as tired and fatigued as I was, I decided to make them for her out of the guilt I was feeling.  I had to stop stirring the batter several times due to the pain and cramp in my hand.  Twice while trying to stir the batter I had to stop and grab the bar on the stove, and slowly bend over stretching my back due to the pain I was experiencing from standing for those few minutes.  

My symptoms are so severe and I have so many co-morbidities that I'm deemed disabled and I'm unable to work.  That further restricts my contact with other adults and the outside world.  It leaves me poor, as I live on less than $750 a month.  That means that not only can I never vacation - oh how I dream of a week long vacation on a beach somewhere lounging around in the sun, splashing in the water, and sitting in a hotel hot tub.  Eating out and not having to cook or do dishes - but I struggle to put clothes on my back and food in my house.  Eating out is a rare luxury.  I've decided to try to see a movie at the $3 afternoon rate once a month, so that I can have something to look forward to and to do.  Of course, it'll all depend on how I'm feeling that day.

Every single day, I have 12 or 13 meds that I have to take.  A couple are once a day, but most are two to three times a day.  I hate taking meds with a passion.  Even as a teenager I'd suffer through pain instead of taking a Tylenol.  

At times, I'm left feeling stupid or embarrassed due to Fibro Fog.  For those that don't know, Fibro Fog is the name given to the cognitive delays one can experience with Fibromyalgia.  I'll be in the middle of speaking (or writing) and forget what I was even talking about, let alone what I was going to say.  I'll walk into a room and forget why I went into the room.  Shortly after starting this post, I went into the kitchen to make a cup of coffee.  I opened a bottle of water to dump into my Keurig, and found myself instead pouring it into my coffee cup.  It made me mad and disgusted with myself.

Insomnia (leading to sleep deprivation), another wonderful co-morbidity of Fibro.  It literally rules my life.  I've been awake for 36-48 hours at a time.  I've been so tired that I've literally cried.  Not getting the proper rest leads to more pain and depression.

Not every person with Fibromyalgia experiences it as severly as I do, so please don't read this and think this is definitely going to be your life.  On the other hand, some people with Fibro experiences symptoms more extreme as I do.  Such as the lady who had to crawl to the bathroom.  There's just no way to guage how it's going to effect a person.

All of this combined plus more that I didn't even delve into, leaves me saying yes, I honestly would rather have cancer than fibro.  Given the choice, I'd choose neither.  I'd choose to be illness-free.  I'd choose to be healthy and happy and a productive member of society.  That isn't the road that God chose for me though, so I'll awake every day.  I'll go through each and every day with as much optimisim as is possible.  I'll make the best of each day as is possible, and do the best I can.  I hope this post doesn't offend anyone and if it does I'm sorry ...but I won't apologize.  These feelings are mine.  They're real, and I own them.





Tuesday, February 3, 2015

Stigma?

Most of the time when I share or upload a picture on The Fibro Frog's facebook page, people share it.  Heck, a lot of times when I make a status saying I'm in pain, that even gets a share or two.  As I was scrolling the facebook page last night I found something interesting.  There was a picture I had shared with a ton of "likes", but not a single re share.  This is the photo:


This photo has 293 "likes" on it, but not one single share?  That really saddens me.  Most of us that have Fibro, also suffer with depression.  It's a very common comorbidity of Fibromyalgia.  I mean, who could remain happy and optimistic and NOT get depressed when their lives as they've always known them is ripped away and replaced by extreme fatigue, forgetfulness, all-over body pain, and a general feeling of malaise?  

Are we willing to talk about our Fibromyalgia, but not about our depression that accompanies it?  Why is that?  Mental illness has always carried a stigma, much like Fibromyalgia has.  Thanks to all of those that have been researching, educating, and advocating a lot of stigma surrounding Fibromyalgia has been alleviated.  Oh we still have a battle ahead of us on that front, but it has come a long way from the time that even most doctors thought it was a garbage can diagnosis.  If people aren't willing to spread the word and educate about mental illnesses too, including depression, then the stigma surrounding these issues will never go away.  

Are people afraid that if they share something like this, or talk about a mental health issue that they're going to be regarded as crazy?  Well allow me to share something with you all.  Everyone is just a little bit "crazy" in their own way.  Anyone is capable of a psychotic break under the right circumstances.  Mental illness of some sort, is a very real possibility in the lives of every human being.  Why is society so quick to judge each other?

I'm here to publicly say that I suffer from depression.  Sometimes severe depression even.  I've had days where no matter how hard I try, tears just slowly roll down my cheeks off and on the entire day and night and I feel like just giving up.  I'm lucky though, because I always seem to be able to muster a little bit of HOPE from deep down within to keep me going.  Some people with depression issues aren't that lucky and have a very sad ending.  

According to PsychCentral.com 50% of those that have chronic pain, also suffer from depression. (CLICK HERE TO READ ABOUT THIS)  The NIH estimates that Fibromyalgia affects 5 million Americans aged 18 or older.  Look at all of the other chronic pain conditions out there besides Fibro.  That's a heck of a lot of people, that also suffer from depression.  So why the stigma concerning it?

I'm going to leave you all by saying this: No one should judge another without walking in their shoes.  The less something is talked about, the more it will be judged.  We all have our own problems, but in reality we're all the same.  We're all just trying to make it through life the best we can, and remain as happy and satisfied with our lives as possible.  Please don't be embarrassed if you suffer from depression or any other mental illness.  Talk about it like you would any other health condition you have.  Help end the stigma.  Be a #StigmaFighter!