Viewing the awesome landscape of the early morning with the chorus of “Amazing Grace” playing in my mind…
“Amazing Grace, how sweet the sound,
That saved a wretch like me.
I once was lost but now am found,
Was blind, but now I see.”
The gift of a new day with just a hint of God’s power and majesty on display.
As I have referenced in a prior blog, I recently really overdid it. It was an innocent mistake that many of us with chronic conditions/illnesses have probably made. In setting up appointments, I scheduled two appointments on the same day thinking that a combined trip would save energy and time. I knew it would be more tiring than just one appointment, but it couldn’t be that bad…right??? Well…WRONG!!!!
My first appointment was with the psychologist…an hour long session. Much needed, as we are working through the frustration and isolation that my conditions cause. We have been working on some great new tools to add to my arsenal. I have come to really appreciate this addition to my medical team.
After that, it was time to head to the appointment with my pain specialist. We had a bit of a wait, which was good as I could tell I was getting a bit tired and needed to gather my second wind. Once we reviewed the past couple of weeks, the adjustment of my pain pump was complete, and we were headed out of the office to fill a prescription.
While waiting for the prescription, we did a small amount of shopping which included picking up an easy fix for dinner…meat skewers for the grill. After a short wait it was finally time to head home.
Once home, I could feel my body saying enough…so I did go to bed early so that I could get off my feet. The next morning was hard to wake up…and yes, I did sleep in. However, even though my eyes were open, I was still asleep. It is that deep, heavy fatigue that envelopes the entire body. I could do nothing but recline in my chair or lie on the couch.
I did muster enough energy to attend a friend’s BBQ for a couple of hours. I just could not bring myself to disappoint our son…who was looking forward to seeing several of his friends.
The next day of course, was another day of heavy fatigue…just not quite as thick as the day before…but close! My brain was blurry; and, I completely lacked focus. I was again resting in my recliner, lying on the couch…and went to bed very early as my body was just done.
Finally, awaking on the third day, I am feeling more of “my” normal. That is if you can use the word “normal” in any type of description of those of us with chronic illnesses/conditions! My energy reserves are still extremely low so today will be a day of rest…reclining in the chair and will include a nap in the early afternoon. By tomorrow, I might be able to take a shower!
It is hard to describe in words the fatigue that comes with a chronic condition/illness like mine. A healthy individual will automatically think, “Oh yeah…I know exactly what you mean…like when I have had to work an 18 hour shift.” Well…you must magnify this by at least 10! (Yes…probably being quite conservative.)
The “fatigue” that hits us when we overdo…even slightly…completely strips us of the ability to function…it is, as I described, like a thick blanket that tightly wraps around us…all senses are numbed…we see…but we don’t see…we hear…but we don’t hear. We are unable to form a sentence…it takes all of our effort to just sit in a chair…all that we can truly do is lie in bed and hope that sleep will come…as we melt into the mattress.
No matter how carefully we try…fatigue will hit. When it does, all we can do is give in and allow our bodies the chance to recuperate and to recharge…read if you can…watch a silly movie. Smile and relax…know that it will pass.
Just as lightning
Pierces the darkness…
So does the pain
Coursing through our bodies.
Just as nature
Can offer a hint…
Our bodies can also
Provide that sense of being off.
Then out of nowhere
The flashing light….
Followed by the roar
The deep sounding rumble.
The pain strikes
Sudden and undetermined…
Not always the same
Yet it is blinding and searing.
Just as the length
And the strength of the storm…
Builds and threatens
So do our bodies respond.
My thoughts are not focused
Scattered as if by the wind.
The pain that is overwhelming
Will give no relief.
Sleep is but a wish
A distant dream.
The lack of precious sleep
Magnifies the intensity.
Guaranteed to embrace the
Spasms, throbbing, aching, burning.
I do not understand the reason
Yet I truly feel no need to question.
I choose to trust
In God, The Father.
I choose to believe
That I will somehow give strength to others.
I choose to continue to dream
Of a life yet to be that has less pain.
I struggle with my grief
As I see the pain in the eyes of those close.
My husband and son, family and friends
Must watch…as if on the sidelines.
I smile and put on my best front
Not wanting to see the fear and concern in their eyes.
It is through displaying strength
That I hope their fears will be lessened.
The loss of my Baby Sis
Has cast a shadow.
Yet the bright blue in her eyes
The intense joy of her smile.
Closing my eyes to hear her voice
Remembering her laugh.
I speak to her daily
Knowing she hears and understands.
Her gentle touch via the breeze
Or the warmth of the sun.
Reminds me that this I do not understand
Yet again, I know that God Our Father has a plan.
These words are not written as shallow
Without feeling….without the huge sense of loss.
I am living through the immensity of both
My bodily/ability loss and that of my CareBear.
I find strength in her perseverance
In her zestful taste of life.
I embrace my husband and son
Relishing in their laughter and enthusiasm.
I so appreciate my family and dear friends
The sound of their voices, words by email/text.
For now this reality of constant pain
Living with these overwhelming sensations.
Day upon day upon day
Is truly my cross to bear.
Some day I will look back on this time
I hope with just a touch of understanding.
In hopes that somehow, somewhere
I was able to touch someone’s life
Just as my Dear Sister.
What are the “True Thoughts of Loss”? Really??? It TOTALLY SUCKS!
Truly! The loss of someone so close….especially in such a sudden tragic way is VERY hard…..
Even with Faith…with belief in a higher power….realizing that God IS God….
It is STILL difficult! It is just Faith that helps….it gives the strength to know that there IS some greater good…..a good that is BIGGER than we are….that is outside of us….that we cannot see….
We cannot see this BIGGER good because we are TOO close! We are TOO close to the origin!
I guess that is the TRUE secret!
The knowledge and the true HOPE that our BELOVED has somehow bridged the gap…has SOMEHOW impacted lives in such a way….that even in his/her death….the result is a GREATER impact on ALL those around him/her!
In my case….I have had the TRUE pleasure….the TRUE blessing….of seeing FIRST HAND the HUGE impact that my Sister had on the lives on those around her!
My Sis….is a TRUE living testament to a LIVING…BREATHING…God…..
Thank you Lord for holding my Sis Close!!!
I had hoped to be able to help others dealing with a sudden illness, surgery or dealing with a chronic health condition by starting this Blog. I have found so much more!
The friends I have made….fellow bloggers dealing with their struggles…..each offering inspiration….sharing encouragement…..sharing themselves. What a wonderful blessing you all are!
Other blessings of course….my husband…..my son….our families (parents, brothers, sisters, sister-in-laws, brother-in-laws, cousins, Aunts, Uncles). Our friends……our Church family……I am so blown away by the loving support!
This struggle with pain has opened my eyes to a deeper appreciation for those around me. I am awestruck and humbled by all the support I have received and continue to receive.
I am deeply appreciative and thank God for everyone whose lives I have been blessed to touch.
Each day when eyes first open…..breath in the sweet air…listen to the sounds all around….and submerse yourself in all the wonderful blessings around us!
I am sure that I am not the first nor the last dealing with long-term health issues that pushes too hard….to far…at times. Then of course…we do as I am now…”paying the piper”….sitting with the heating pad….knowing it really isn’t doing much….just not looking forward to the weight of a blanket on the side that cannot be touched.
I would do it again in a heart beat! I want to meet my obligations at work….there are set things that I cannot hand off. Then the most important part of the day comes after work! Watching my son play baseball! I know we will be disrupted by another hospital stay all to soon…I just cannot bear missing a moment cheering…..watching….participating!
I know tonight will bring little sleep. I will turn in into prayer and meditation time….afterall…just relaxing will help to provide energy for tomorrow. Tomorrow will be more low-key….no game…no important meetings at work…..just the best part of the evening…Cub Scouts! Smiling happy faces…the boys laughing and enjoying each other…learning and growing!
This is the daily struggle…the day to day that we “manage”……as we as parents…..manage our illness/sickness/pain…..our children do not realize the powerful role THEY play. Our kids are our inspiration…..our joy….our angels….that assist us each day. Overpowering the bad with the good….providing the “misdirection” that we need to lose focus on what we ourselves are dealing with….taking us “above and beyond”.
The biggest challenge is making it through the work week….both work and family obligations. Focusing on the basics that must be accomplished…and enjoying any possible extra that I can get in….like taking my son to the book fair at school.
It is not comfortable…body aches badly…however, I don’t like to show it. I am sure you try to hide it the best you can as well. Some days it is easier to hide than others.
Even after all this time it is hard to know that I have no control. My body dictates my activity level…hard to explain….wanting to join your family for the basketball game…yet knowing, if you go, you won’t be able to sleep at all and will not be able to move beyond your easy chair the next day. (Personally, I go anyway…and pay the price! Those precious moments are few and limited!)
Now the weekend is here…time to try to rest and relax…keep things as low key as possible. I close my eyes and remind myself I will be back to exercising….even running soon! I will be up for hunting this season!
Mom Is Sick -- For Parents & Kids 
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