Embracing life with chronic pain.

Archive for December, 2015

Let’s Be Real! Honest That Is!

No one dreams of being diagnosed with an illness/condition that is so obscure…one that some medical professionals still do not “believe” in…

No one wants to be labeled a “freak”….yet…those of us with Fibro or its associated conditions feels like!

I am suffering…dealing each day with pain that is beyond words…

Symptoms can include: body on fire, being stabbed repeatedly with ice picks, throbbing pain, knives that are stabbing or cutting, feeling of ants under skin, wanting to peel ones skin off because of the overwhelming sensations!!

Now add the inability to sit still…plus not remembering if you brushed your teeth or showered!!

Welcome to Fibromyalgia!

It is not pleasant….quite frankly, it SUCKS!!! 

Words cannot encompass the horrific feeling of living day to day with a body completely out of control! 

When clothing hurts so much that you want to scream! You want to rip every cloth…yet you know even just the feeling of air against your skin is enough to make you cry….to scream…to wish the sensations would stop!

Those of us with Fibro feel an immediate kindred spirit with other Fibro sufferers! We do not have to use words…looks or actions tell the entire story!

We Fibro sufferers understand the nuances…the subtle shift with hand or head…

We are gifted to see each other!

Therein lies our strength!

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Fibro “Flare”

Living with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder has been the hardest adjustment of all my medical challenges!

There is no surgery…no pill…no supplement…no diet…no magic cure for these conditions!

There is so little research…so little know about Fibro!  The best thing I have found are the web resources….the sites and blogs of those dealing with Fibro and its assorted “siblings”!

It is a comfort knowing that I am not alone…it is sad that it takes SO long for us to be firmly diagnosed….and even then…we are usually dealing with so many other issues in addition to Fibro….each of which feed off the other.

I am not well enough to work….not well enough to be the smallest fraction of the person I was years ago before this mess!  I know that I have a long road…several years before I will have symptoms dialed down enough to know what my “new” normal will be!

“Exercise” is walking from my recliner or couch to the restroom at the back of the house….on the very best of days I might venture downstairs (once)!  I have NO muscle tone left….I used to be able to run 5 – 7 miles a day!

Night and day is not even a good description of the life change I have experienced….yet…it is not only me!  My husband and son have witnessed this transformation first hand!  My family and friends have seen the change….

I do my best to project a positive image….smile when I am hurting so badly….only those with chronic conditions/illnesses or those closest to me can catch the slight grimace or the facade!

I am NOT going to give in to these conditions….I have challenged head on my many other conditions….I am thankful for my Colostomy….I am handling my IBS with diet….

Sleep continues to be a challenge…..thankful though for my Primary Doc who has helped me come up with a sleep aid!  Children’s Benadryl (or in my case a knock-off brand since I must have dye free)!

I am thankful for the move my husband and son were willing to make to give me a chance to improve! After having visited Oregon again, I am thankful that Idaho has helped with the joint pain and incredible burning! (Now I only experience them under extreme stress or when we visit Oregon!)

There are days that are MUCH more challenging then others….yet…I am learning to just allow my self to recline…to rest….to be relieved of all duties….to recognize the overwhelming pain and sensations and not fight!  To allow myself to just stop….to rest….to distract myself from the pain…the burning….the overwhelming sensations by blogging….reading…or watching something on TV…..

Fibro Fog / Fatigue + Holidays!

For anyone with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder and the like, you understand the joy and pain that the Holiday Season brings! No matter what we do to prepare ourselves, we will have enormous challenges!

I am one of those “lucky” enough to not be able to fly.  Flying exacerbates my symptoms so badly!  (The last flight I did took over 8 weeks to settle my body to its “normal” pain and symptom level!)

So…this year’s trip to Oregon to visit family and friends was done via car.  Yes…a daunting task!  Worth it though! Wanted the chance to see everyone that we possibly could!  And….of course, we did not get to see everyone that I had hoped!

I rested before the trip to hope minimize impact. Even with several breaks…the road trip was rough. I did make a point of resting (taking a nap or at least lying down) for a minimum of 30 minutes each day….a goal I came pretty close to!  LOL

Once home, everything hits….that overwhelming fog/fatigue/exhaustion that is COMPLETE total control! The feeling that you are not awake…that you are still in some type of dream….that your body moves….yet…your mind and senses are at least 10 steps behind!  The feeling that you are floating outside of your body….as you clumsily attempt to walk…or hold a cup to take a drink!

Yet there is peace with this craziness!  The peace of knowing that you were able to see people that are near and dear to you!

Wonderful Words

One of my Sister’s dearest friends wrote something so wonderful….so meaningful for anyone who has lost someone Dear to them!  I had to share this!!

Death is nothing at all. It does not count. I have only slipped in to the next room. Nothing has happened. Everything remains exactly as it was. I am I, and you are you, and the old life that we lived so fondly together is untouched, unchanged. Whatever we were to each other, that we still are. Call me by the old familiar name. Speak of me in the easy way which you always used. Wear no sadness. Laugh as we always laughed at the little jokes that we had, you know there were many. Smile, think of me, pray for me. Life means all that it has ever meant, I wish I was at here with you. This death was just an accident. Why should I be out of mind because I am out of sight? I am waiting for you, for a time. I miss you so much, but all is well my beautiful friend. Words come to me. I look up toward heaven and I talk to you as if you are sitting next to me. You are eternally close in my heart and my every day thoughts. I miss you so incredibly much. My heart struggles to heal. Merry Christmas in heaven. 🎄🎅🏻🙏🏻🎆

Pain and Loss!

Those of us struggling with chronic illnesses/conditions are not only dealing with the horrific day to day pain….but the loss of any type of a “normal” life!

We watch people walking around….knowing that each person walking into the grocery store…walking around the mall….has NO idea of the freedom they are experiencing!

The normal person takes for granted being able to go the store….he/she walks in from his/her own car and then goes in….walking the aisles….and purchasing what he/she wants….

Now…from our perspective!

I am pushed in a wheelchair from our rig….to the store…..to attempt to direct the purchasing….well…at least as best as my memory can recollect! LOL  Yes!  We have to back track several times…because I never can remember what we really need…even when I have listed some info on my phone and mentioned some items to our son….LOL

I as many are dealing with day to day pain….yet….the pain may differ….as Fibro targets different areas at different times….what hurts now…may not hurt later…..and what hurts later….may not hurt the same as tomorrow…..

Yes!  THAT is our “gift”!  Our symptoms shift…..change…yet…continue….

To someone that is NOT living in this….it would be very confusing!

Our bodies are now controlled by an “outsider”…..this “outsider” is Fibromyalgia!

I see this equivalent to an “alien invasion”!  It really truly is!

So little is known of our illness/condition!  It IS real….it is not a figment of our imagination….it is not a group of individuals “making” up symptoms!

We are dealing…each and every day…with the pain….and the “loss”….of our prior selves as we struggle with this illness/condition!!!

Empowerment!!!

Please read this!  Take time and pause…..it is powerful and awesome….

WARRIORS DECLARATION

I am tired of settling

I am tired of living beaten down

I am tired of being told that this is how life is going to be

I am tired of being afraid

So I am taking my position as a daughter of the Most High

I know who I am; I know Whose I am

I know what I believe and Who I believe in

I know who I’m fighting against; and what I’m fighting for

Today I am making the decision to stop living like a survivor and start living like a warrior

I refuse to settle; I refuse to just get by;

I refuse to lay low; cower down; and live my life in the background

I am in this thing to win.

Mountains don’t scare me, valleys won’t stop me, people won’t hinder me

I will fight until I conquer!

I will not give up any ground I have fought for;

I will not be pushed over; under; or backward;

I will stand my ground until I make progress

I know times will get tough, but I will get tougher

I know I might fall down, but I will get back up

I know I might fail, but I will keep on trying

I have settled in my heart, I will not be a causality

I will not be missing in action

I will not be a prisoner of any war

I am determined; I am not a quitter, I am not a failure,

I am not a coward, I am not a victim, I am not a survivor

I AM A WARRIOR!

        ——-Unknown

Reactions 

 Common reactions to chronic pain over time include fear, frustration, anger, depression, and anxiety. These feelings can make it harder to manage chronic pain, especially if you use alcohol or drugs to deal with your symptoms.—————————–

For those of you living day to day with chronic pain/illness….the above words can make you laugh!

Which one of us dealing with chronic pain, can say that we have not felt frustrated, angry, depressed or anxious?!?!  It is a trick question! For that I am certain!!

Living with a chronic illness/condition and seeing how it impacts those around you on a daily basis is the hardest challenge of our lives! 

I see how hard my health condition is on my husband and son! I know that no 11-year-old should have to deal with what our son sees each and every day. 

The hardest part is knowing that out son has never had the joy of a healthy Mom!

He only knows of having a sick Mom….that we do the best we can but there is always the underlying worry of having a sick Mom!

For those outside to write a comment like the above….it is disgusting!  

You have no idea of the daily struggle that those of us living with chronic illnesses/conditions…

If we should choose to allow ourselves a drink or to allow ourselves a pain pill….you cannot judge. 

I just pray that those of us struggling do not give in to alcohol or drugs to cover our daily pain. 

There are times we use these tools to calm our situation….although they will do nothing for our fight. But a brief respite we might find!  For that? Thank you….

No I am not supporting substance abuse! Just want to bring into perspective the life of one trapped in constant pain!

Believe me….being the one that is in constant pain does not hurt nearly as much as watching my loved ones endure my daily pain and limitations!

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