The reality of living with a chronic condition like Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/etc. is difficult to explain to someone on the “outside”….someone who is not dealing with our day to day battle.
The past couple of days (including today), I have been dealing with the overwhelming fatigue that attacks for no reason! The kind that makes it virtually impossible to keep your eyes open. Going to bed early…taking a 3-4 hour nap….then able to go to sleep early….to sleep in and do it all over again! Taking SO much effort to just open eyes and get out of bed.
My body has been so achy….so heavy….so tired! Thankful for the pain medicine that has been added to my arsenal…imagine how bad I would be feeling without it!
My body has been running the gamete of symptoms though…..the aching, stabbing, throbbing, cramping, extreme weakness, severe Fibro Fog, numbness and tingling, insomnia coupled with the inability to wake up (what kind of a twist is that!)…feet aching and stabbing so bad it is hard to put weight on them! Even elevated there is no relief.
Our conditions are made worse by the fact that most of us appear “completely normal” on the outside! Would be so helpful if there was a way to truly measure our illnesses/conditions so they could be seen by our health care providers, our families and friends!
I know that I force myself out of bed each day….force myself to get dressed…even if I can do nothing more than to lie on the couch or recline in my chair….just getting dressed helps me to feel that I have accomplished something. It gives confidence!
That bit of confidence helps on days like today….when I feel that I am losing the battle! After all….tomorrow will be another day…
Like a winding dirt road
Winding through mountainous terrain
The beauty of the trees
The chirping of the birds
Butterflies flying overhead
The sound of bees
As they move from flower to flower…
The shadows are slowly giving way
The brilliant blue sky
With only a hint of a slight breeze
The brilliant purple of the thistles
Clash with the brown dry grass…
So many colors
Overwhelming all senses
While the quiet sounds
Can barely be heard above
The ringing of my ears…
The reason that I am here?
The brain fog has hidden
The initial focus is gone
Given way instead
To the beauty that surrounds…
We can often be our own worst enemies….in a recent conversation that I had with a “new” friend…I was disappointed to hear that she knows others with Fibromyalgia; however, they do not speak about it, nor do they speak of their experiences.
I have found that by opening myself up….by speaking about my various conditions/illnesses, that I have not only helped myself, that I have also helped others around me.
My family and friends have a better understanding of what I am dealing with. Others with similar conditions have been a great source of encouragement! It is so helpful to exchange ideas, medications tried, relaxation techniques, exercise options, etc. This is also huge in reinforcing the fact that we are NOT alone!
We must also be prepared to speak up to our doctors….our specialists….it is the only way to continue to raise awareness of our hidden conditions/illnesses…by speaking up we can help direct bring attention to these little known conditions/illnesses that impact so many of us.
Just as a tree
Ravaged by wind and storm
So is pain to our bodies…
Pain ravages all
Mind, body, soul
Wreaking havoc on relationships…
So grossly misleading
For this would truly be the view…
The world sees
Tall and majestic…
Yet the truth
Is like the image above
Twisted and bent from our battle…
We live, laugh and love…
To “stand tall”
Even when we cannot leave our bed…
Strengthened by Faith
Family and friends…
Continuing to push
To share with others
Hope for a better tomorrow…
One of the biggest challenges in addition to dealing with day to day pain is that of self confidence. Just think about it! We are battling constant pain…we can no longer do things we had taken for granted (anything from work to exercise to playing with our kids)…we struggle with our memory and thinking process…some of us like me, have had body alterations (for me a permanent colostomy) that we are thankful for, yet impact our body image…we look fine on the outside yet we know just how badly we are impacted by our conditions/illnesses….the list could go on and on…
The ultimate result? We can find ourselves looking in the mirror before or after a shower and find ourselves feeling hopeless…ugly…fat…you know what I mean! We each have our negative demons that we fight…
This wave of negativity usually goes away pretty quickly…sometimes we have to put a lot of effort in to the fight….other times a distraction (like hearing our children laugh) will help to snap us out of it…
I also know that our lack of confidence can be impacted by the way we dress. If you are like me, you wear loose fitting clothing…I do so because of the pain that the pressure of clothing causes on the skin as well as the fact that layers or loose clothing hide my appliance.
Just know that struggling with self confidence is normal! It is not a sign of weakness….it is part of being human! We are struggling on so many fronts it should not surprise us that our self confidence can take a beating as well!
Adrift on the breeze
Shifting and flowing
Driven by an unseen force
That can be
Or anything in between…
A glimpse at the clouds
Reflects a life with pain…
While dealing with chronic illnesses/conditions, our lives and those around us are impacted. Just like everyone, we can bring positive or negative to our relationships.
I know that our illnesses/conditions bring another layer of stress to our family relationships that others do not have to deal with. Our children often have more responsibility than their peers…our spouses are helping with the upkeep of the house…we often are not able to assist…no matter how much we want to!
It is easy to give in to discouragement, frustration, depression…yet, we can continue to choose optimism, embracing the positive joy our children exhibit, being thankful for all that our children/spouses/friends do for us.
It is hard to adjust from doing all for everyone…to having things done for us. However, I have found that in allowing others to do for me….that I have been blessed….blessed with a deeper respect and love for those closest to me…along with additional friendships.
Also, I have found from talking with those near me that they appreciate the opportunity to help. They benefit from being able to help me! WOW! It truly is a two way street!
It is difficult living with our conditions/illnesses…yet, I feel the one thing that we still have control over is our attitude. So each day I choose to have a good attitude! (Some days I fail…however, I strive daily to choose positive rather than negative….I guess it is my way to prove that Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS-D/Chronic Fatigue is NOT in control of me!)