The most difficult part of living with hidden illnesses/conditions like Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS, etc. is trying to describe our conditions to those close to us. I created the attached PDF to demonstrate how complex these conditions and their associated symptoms are…
Posts tagged ‘children’
No matter our chronic condition/illness, our lives and the lives of those around us are forever altered. We are stressed to our breaking point. The emotional toll overwhelms. We are in the midst of the most intense storm of our life.
We are tested at what feels to be beyond our limits as we battle our way through the health care system, working with our doctors to find some sort of relief to allow us to have a life of some kind…our loved ones and those close to us witness this first hand.
We embark on a new journey that is dictated by our bodies…grieving who we were and had hoped to be. We struggle to adapt…to accept the fact that we might be home bound, unable to drive, barely able to maintain good hygiene…yet we do.
Like me, you might have to fight for SS Disability. Even with the assistance of an advocate/lawyer, this can be an arduous task. My route went through denials…to a hearing…taking 26 months to finally have the Judge rule in my favor. All the while, watching our resources dwindle to nothing.
I am thankful to be at this last step…awaiting the formal notification that will verify the monthly payment and solidify medical coverage. Yet I am bereft of emotion…feeling hollow, raw…an empty shell…praying for this wave to settle quickly…knowing that this journey is far from over.
I had the pleasure of having visitors yesterday. Being primarily homebound, it truly brightens my day! It provides contact when we are on the sidelines…it is a blessing to be taken out of the day-to-day normal.
During our conversation we talked about how school was going for our kids, they shared their struggles as families to adjust to the new schedules which now include sports activities, practice, homework. Observing their dedication as wives and mothers, I was struck by a powerful thought…”Do they realize how blessed they are?”
I sat listening…mesmerized by thoughts of going to a HS Football game, driving kids to various activities, preparing family meals. It was like a movie playing out those words as images flew past…again the powerful thought…”Do they realize how blessed they are?”
My brain has been so very thick with brain fog or Fibro Fog that it is next to impossible to put words to my thoughts. It has been a huge challenge to speak…but I could not ignore the seed that had been planted.
I am compelled to share some of these blessings:
- Having more than one child. (Do not take this wrong…being a parent of an only child is a huge blessing also!)
- Driving your children to activities. (It is truly amazing to be able to get into your car and go! No day before and day of resting and naps to have enough stamina…not to mention the required ability to focus.)
- Preparing family meals. (This act takes SO much energy…only the simplest of meals is made in our household…and that is after hours of rest.)
- Attending after school activities like a HS Football game. (This is a dream…to be able to drive to the game…to walk to the bleachers…to sit and cheer.)
What can appear to us as routine, mundane or hectic is often a blessing in disguise. It can take losing one’s health to fully realize the every day blessings that surround us.
Looking out the window
I watch the leaves dance
In the gentle breeze…
Moving to and fro
The shades of color shift
From dark to light and back again…
The sun’s rays make the leaves glow
Reflecting the rays like colored mirrors
The radiance adding depth to the color…
The rays permeate the trees
Cascading through the leaves
To dissipate into the depths…
My eyes are drawn back
To those top most leaves
Dancing with the rays of the sun…
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.
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! : )
It is inevitable during our battle with chronic pain that we face discouragement. After all, we are battling on so many fronts!
We find ourselves struggling with the guilt that our longterm illness/conditions cause…as we watch our finances depleted and debts grow…knowing that we are helpless to do anything about it!
You may be fighting for social security disability like I am…finding that each time we get close to scheduling a hearing…that the “backlog” has pushed our case out yet another two to four months…
Add another layer.. .that with insurance changes that placed me into forced withdrawal as I awaited my prescription to be approved…
I could go on and on…the important point is to understand that we we will have ups and downs…no matter how positive we try to be. Remember that our projecting a positive front wears on us as well! Our limited “spoons” are often used before we can get out of our bedroom in the morning!
Allow yourself a time out…a day to sleep…a day to watch your favorite movies…the time will help you to “reset”. Our struggles will still be there but our spirit will have been strengthened.