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 ‘hidden illness’
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.
Just as the thick cloak of night
Hides the shadow
My body belies the reality
Of the war raging within…
It is bejeweled by the glistening stars
Twinkling like diamonds
Forming well known constellations
Whose paths were set to motion eons ago…
The path of chronic pain is arduous
It tests us in ways unimaginable
It attacks physically, mentally, and emotionally
Showing no mercy and no predictability…
It taunts with images of yesterday
It teases with thoughts of “normalcy”
Reality check…pain is real…symptoms are real
Yesterday is our distant past…
The challenge now is to create
To embrace our limitations
This is our new reality
To embark upon a unique journey…
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…
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 am sure you recognize this graphic. We see this image in one of its various formats each time we visit the doctor. For those of us “blessed” with chronic pain, it is a mute point.
I was ridiculed by the ALJ during my hearing yesterday because I have consistently been using the number 10 to describe my pain WITH medications.
Now let me attempt to describe this Pain Scale through the eyes of someone who is homebound and in constant pain.
Many years ago, a wise nurse tried to help me interpret my pain to be placed on this scale. She simply said that in my situation, if I am noticing pain/discomfort that I am to respond with a 6. If my day-to-day life is completely off kilter, I should respond with a 10.
Fast forward to the present. The ALJ’s understanding is that a “10” means you must be in the hospital. I can hear the smirking of those with chronic pain. Our medical team is all ready doing everything possible to try to improve our quality of life…oftentimes, that means to bring pain within a tolerable range…like a 7-8! Reality check! All they could do is attempt to overwhelm my system with medications that I cannot tolerate! My combination of diagnoses do not have a definitive origin which has caused much frustration to my doctors and specialists.
I could hear the condescending tone when the ALJ responded to my description of Polyarthralgia. He asked about Lupus, Rheumatoid Arthritis, etc. All have been ruled out. My set of diagnoses: Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Pelvic Floor Syndrome, Neuralgia, Postherpetic Neuralgia, Paresthesia, PTSD, IBS-D, Colostomy; do not fit the norm. My issues have been “unique” making my “special” (terms that I have heard so many times). These are diagnoses that you are assigned when you do not test positive for something!
Why have I been answering “10” “Unimaginable/Unspeakable? Let’s see…just a few thoughts come to mind…I am homebound, can barely move from the bed to my recliner, find no position to help relieve symptoms, have thick Fibro Fog (brain fog), have difficulty completing a sentence, experience Flares on a regular basis (riding in car to doctor appointment will set me back for days), cannot concentrate…these diagnoses have completely robbed me of a “normal” life. How do you describe to an outsider the reality of being a prisoner within your own body that is complete with its own torture chamber?
The other important point, is that I am in the process of weaning off of the medications as we continue to fine tune my pain pump. Here again, the ALJ just wanted to focus on the ONE visit where my pain level was actually down to a 9! The reality of that number was the result of the pain pump being implanted and still taking ALL medication! The entire reason we fought SO hard for the pain pump was to offer me the hope of true improvement…NOT masking it by overwhelming my system with drugs!