The beauty of the sky
The myriad of colors
The sounds of life abound
Even with the ever ringing in the ears…
It is as if I had been in a lifetime slumber
My senses forever dulled
Reaching upwards for help
While overwhelmed in quicksand…
Illness strips us of the familiar
We are thrust into the unknown
Each step taken as with a blindfold
Hands outstretched groping in darkness…
Our medical teams struggle
Conditions and illnesses so misunderstood
Further muddled by myriad of symptoms
Each of us so different from the other…
We search for answers
Yet try as we might
We find health elusive
Stripped from us and locked away
Secreted in the darkest, farthest corner…
We are tried and tested in ways indescribable
As words are a shallow testament
To the inner symptoms that abound
Forever changing and challenging…
My Clinical Psychologist introduced me to a powerful tool to add to my arsenal. It is called “mindfulness”:
“A mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.”
She walked me through a breathing exercise…complete focus on the breath itself…feeling the cooled air entering my nose…feeling it hit the back of the throat…feeling the rise in my chest as the air enters the lungs…feeling a second, subtle rise of the chest before exhaling…feeling the warmth of the air as it leaves the body.
I was then read a short story about washing dishes, from “The Miracle of Mindfulness”….I will share just one paragraph that sums up the idea of mindfulness very well…
“…If while washing dishes, we think only of the cup of tea that awaits us, thus hurrying to get the dishes out of the way as if they were a nuisance, then we are not ‘washing the dishes to wash the dishes.’ What’s more, we are not alive during the time we are washing the dishes. In fact we are completely incapable of realizing the miracle of life while standing at the sink. If we can’t wash the dishes, the chances are we won’t be able to drink our tea either. While drinking the cup of tea, we will only be thinking of other things, barely aware of the cup in our hands. Thus we are sucked away into the future — and we are incapable of actually living one minute of life.”
I applied this during my walk outside this morning. I took the time to not just see the sun…but to, really, “see” it! I felt its warmth…the rays touching my skin…the brightness shining…the reflection on the leaves. I felt the slight breeze…ever so gently twisting and turning the leaves in the trees…the slight movement of my shirt being pressed against my skin…the movement of the hairs on my arms…
It was truly amazing!! My focus was dramatically shifted…momentarily transported into the present time…fully embracing and experiencing what was happening around and to me.
It is now 3 1/2 weeks post pain pump surgery! I have been amazed at how fast my body is healing. I have also been amazed at how quickly the swelling in my lower tummy went away. The butterfly bandages that the pain specialist placed over my surgical areas are still in place. I have noticed just a slight loosening of a couple of them on my tummy. No worries…supposed to let them fall off when they get loose.
I let my body dictate my actions. Let myself sleep in as long as I need….some mornings I am awake at 5…sometimes 6…I try to get up before 7. I am making an effort to walk about the house a couple times a day…goal of 2-3 minutes…resting for an hour afterwards. A nap in the afternoon is still a must! I find that I am sleeping for 2-3 hours…very solid and hard sleep.
I still have to give in and go to bed between 7:30 and 8 PM…to just lie down with pillow under my legs. I take advantage of this quiet time to read or work a puzzle. This down time has worked well to allow me to fall off into a good hard sleep.
We have definitely set what I think is the perfect balance of the pain pump and my current oral medication levels. When I go back in (in about 1 1/2 weeks), my doctor will again increase the pain pump level so we can continue to cut back the oral meds.
This is such an exciting time! It is SO awesome to be working toward a goal…an achievable goal! It is SO rare for those of us with chronic pain from Fibromyalgia or the like to actually be able to be in this situation!!
Now don’t get me wrong…I fully realize the path that is forming in front of me will be a long and arduous one. I know it will be years to regain some muscle…as all muscle is gone for having been homebound for so long. Even with this realization, my excitement is not diminished!
Below the surface
Threatening to erupt
The inevitable struggle
Whether recognized or not…
Why is there such stigma
An artificial wall per se
Associated with our feelings
That cause me to hide…
For some emotions are friends
The ability to interact
To easily express
I think you have a special gift…
To me the intensity
The incredible raw power
Harnessed within its grasp
I would rather not feel…
I channel in pieces
The emotions that
Are churning within…
As day nine post pain pump surgery begins, it strikes me that my pain specialist really did a great job in preparing me for this! I truly was ready to be homebound for the first two weeks. I was mentally ready to be patient with the process! What a thought!!
My thoughts are still muddled at times…very hard to keep on track. Yet…I can just smile and breath deeply…there is nothing that I have to do…except allow my body the time to heal….allow the scar tissue to build near the pain pump and the catheter.
I am able to step outside now…slowly and carefully with my walker. I do not venture very far…it is just a few steps to feel the touch of the sun on my skin…feel the slight breeze…see the brilliant colors! This is a treat that I enjoy once a day…in the mid morning. It is perfectly timed between rest breaks.
I am thankful that I am able to listen to my body…to sleep when I need to…to relax in my recliner (sitting in the chair…cannot put the foot rest up yet). My chair is just high and firm enough that I can get to a standing position with my walker as support. I know that I am not yet ready to sit or lie down on the couch.
I am getting anxious for my follow up appointment…I am excited to hear the plan my pain specialist has in mind…it will be interesting to see just how easy it is to remain patient! : )
Hopefully I will not scare any of you! LOL
I thought it appropriate to post proof that sleep can happen! Thus the wonderful “bed head” picture!
I have almost no memory of yesterday. It was one of those days that sleep overtook everything.
I did exactly what my body demanded and curled up in bed. I did not even think of combatting the heavy eyelids.
It was actually very freeing to just give in and allow my body to dictate its needs.
I am so thankful for a supportive husband and son that allow me to completely disconnect when my body demands it.
Per conversation with my doctor’s office, I am to continue taking it easy…moving about the house as I can…no bending, twisting, lifting, stretching. All is still looking good under the binder…swelling in lowest part of abdomen present…not nearly like before in other procedures.
At my follow up appointment, we will remove the tape and bandages…and at some point thereafter will be allowed to take a shower! I am thankful that our home is so well prepared for handicap…the bathroom counter is taller than normal….so it is easier to wet hair down.
It is important to make sure you have someone around! No matter how careful you are you will end up dropping something! LOL And…believe me…there is NO way to pick it up without asking for help.
At this point, I am better able to tell the difference from the surgical discomfort vs. the symptoms of my conditions. The surgical discomfort is SO minimal! Yet, it is just enough to be a constant reminder to be extra vigilant.
I awake in the early hours
To the throbbing and stabbing
Coursing through my body
I take leave to crawl into a hot bath
As we watch a favorite program
Sleep overtakes me
Unable to keep eyes open
I have no strength to fight
Plans are made
To spend time with friends
Nap taken and extra rest
Do not prevent a flare
No need for self doubt
There will be other chances
Our family and friends understand
Hidden conditions are in control
Our bodies dictate actions
We are forced to be patient
To live within the invisible boundaries
There are times we cry
We battle with frustration
We struggle with isolation
We wrestle with guilt
We cry out to God
For His peace and comfort
We hold tightly onto our Faith
Knowing our path is fraught with boulders
We deal with thick brain fog
With vision that can blur
Often unable to remember
Or use incorrect words