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…
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having or showing a tendency to be easily annoyed or made angry.
“she was tired and irritable”
synonyms: bad-tempered, short-tempered, irascible, tetchy, testy, touchy, grumpy, grouchy, moody, crotchety, in a (bad) mood, cantankerous, bilious, curmudgeonly, ill-tempered, annoyed, cross, ill-humored, peevish, fractious, pettish, crabby, bitchy, waspish, prickly, splenetic, dyspeptic, choleric; More
- MEDICINE(of a bodily part or organ) abnormally sensitive.
- MEDICINE(of a condition) caused by abnormal sensitivity.
I have been praying and reading scripture while wrestling with this beast. Many questions have come to mind:
- Is this a “new to me” Fibro Flare symptom?
- Is this the result of the intense stress of fighting for SS Disability (26 months to finally receive a “Favorable” decision)?
- Is it the result of being overwhelmed emotionally due to the “Favorable” decision?
- Is it a side effect of medication?
- Is it the after effect of changing medication?
- Is it the result of being home bound?
- Is it the result of frustration that the simple act of riding in a vehicle for any amount of time triggers a Fibro Flare?
- Is it from not getting enough sleep?
The questions could go on and on to other tangents as well. My attention span is close to nonexistent. I would liken it….to a young child…distractions are everywhere! The sights and sounds derail me all too easily.
All that is certain is that irritability is a foe!
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.
Reaching for the glass
Watching as if in slow motion
As if it is happening to someone else
The trance is broken…
…shattered glass abounds
Trapped in a body
No longer my own
Every fibre fighting against itself
Overwhelming weakness and fatigue…
Hopes and dreams
Day to day living
Is its own constant struggle…
Balancing the checkbook
Speaking clearly and succinctly
The ability to multitask…
Incomplete and jumbled
I stare feeling frustrated
Simple tasks to most
My mind no longer comprehends…
“Deodorant in second drawer…”
Absently looking into the mirror…
I slowly turn to leave the bathroom.
“Deodorant in second drawer…”
“Oh yes! I must brush my teeth!”
I turn back around
The early morning light
Cascading through the window.
I shuffle out the door…
“Oh yes! Must brush my teeth!”
I find myself in the bathroom again
My eyes happen upon the toothbrush
Hanging quietly, waiting…
Chills hit my body
Drawn to my reflection, again,
I forgot to put on my sweater!
I carefully navigate to the closet.
A glance around the bedroom
I smile as I move toward the bed
Reaching down to collect my soft fleece.
My mind is screaming,
“What did I need to do?”
A long, heavy sigh
I carefully put on the fleece
And begin my slow methodic walk
To my comfy recliner.
I stop part way down the hall,
Slowly shake my head
Another heavy sigh
As I continue to my recliner.
My body falls into the chair,
Feet up with body stabbing and throbbing
I pull the blanket over me;
Waiting for the worst of the pain
To ease enough to rest my aching body.
I find myself as if frozen in time,
“Oh man!! I forgot to put on deodorant!”
As I attempt to write my thoughts, I am overwhelmed with the myriad of symptoms my mind and body are experiencing! The shooting pain in my legs*, the burning and stabbing in my thighs*, the burning and stabbing in my back*, the ice picks stabbing my feet, the stabbing and searing in my arms/wrists/hands/fingers, the burning and deep aching in my right arm, the burning and pressure in my hips*, heavy brain fog (or Fibro Fog) are the primary symptoms that come to mind…to distract and scatter my thoughts further from each other. (*Exaggerated on the right side.)
For those of us with chronic illnesses/conditions, our brains can stall out while we trying to express what our body is going through when asked this “routine” question by our doctor. (Using doctor visit as example because that is the one place that we do our best to be as completely honest and open as possible! If you are like me, you do your best to hide the truth from those around you.)
The answer to this “routine” question is further complicated by the combination of our illnesses/conditions and the medication(s) we are taking. I looked up the most common (10 or fewer) symptoms of the following for quick reference:
Fibromyalgia: Pain, Sensitivity to Touch, Environmental Sensitivity, Muscle and Joint Stiffness, Muscle Spasms, Exhaustion, Trouble Concentrating (Fibro Fog), Chronic Headaches, Bowel Troubles, Depression (http://www.fibrotoday.com/10-common-symptoms-fibromyalgia10/)
Polyarthralgia: Pain, Joint Tenderness, Stiffness, Redness, Fatigue, Tingling or Unusual Sensations, Burning Sensation at Joints (http://www.healthline.com/health/polyarthralgia#overview1)
Neuralgia: Severe Pain, Burning, Stabbing — usually due to an irritated or damaged nerve, so it is localized (http://www.healthline.com/health/neuralgia#overview1)
IBS (Irritable Bowel Syndrome): Abdominal Pain and Cramping, Diarrhea, Constipation, Alternating Diarrhea and Constipation, Changes in Bowel Movement, Gas and Bloating, Food Intolerance, Fatigue and Difficulty Sleeping, Anxiety and Depression (http://www.healthline.com/nutrition/9-signs-and-symptoms-of-ibs)
I then looked up the 10 most common side effects of medications that I have used. (My experience is limited due to the extreme hypersensitivity of my system.)
Cymbalta: Nausea, Dry Mouth, Constipation, Fatigue, Tired Feeling, Drowsiness, Difficulty Sleeping, Loss of Appetite, Dizziness (http://www.healthline.com/nutrition/9-signs-and-symptoms-of-ibs)
Nucynta: Nausea, Constipation, Fatigue, Dizziness, Drowsiness, Itching, Runny or Stuffy Nose, Increased Sweating, Dry Mouth, Sleepiness (http://www.rxlist.com/nucynta-side-effects-drug-center.htm)
These abbreviated lists demonstrate our conundrum. Our illness/conditions have a huge laundry list of potential symptoms a number of which overlap, each of us is unique in how they manifest –from minor inconvenience to full-fledged disability. Making it all the more confusing for all those we interact with.
Our conditions are complex (we have multiple illnesses/conditions)…the medications prescribed for us add another level of complexity as the side effects can further exacerbate our conditions while providing some level of relief. So please do not take my long pause prior to answering out of context, I must temporarily “check out” to conduct an inventory list….that will be promptly jumbled by my “Fibro Fog”…and result in a bleak attempt to put into words the way I feel.
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.