Embracing life with chronic pain and illnesses.

Posts tagged ‘Hidden Pain’

Life Changes with Fibro

The most difficult challenge with Fibromyalgia, Chronic Pain Disorder, Neuralgia and the many other hidden conditions/illnesses that plague us, is the reality of how our lives change.

broken heart love sad
Photo by burak kostak on Pexels.com

As I have written in the past, we do go through a mourning process….just like when a loved one dies.  It was very helpful for me to review the 7 Steps of Grief…not that it makes it easier…it reinforced the fact that I was not “going crazy”.

I was SO unprepared for the realities that would come with my Fibro and other conditions.  My Faith, family, friends, and medical team have been lifelines as I have traveled along this narrow and twisted path.

  • Loss of Job — I could no longer physically or mentally function in a productive manner.  (I have learned to take advantage of those moments when the “brain fog” lifts ever so slightly.)
  • Pursuing Disability — This turned out to be very long, challenging, and stressful.  In my case with Fibromyalgia and Neuralgia (without a known cause), it took over 30 months.
  • Financial Implications — Such a long wait for Disability drained our reserves, and forced more dependence upon credit. Slowly and steadily we are turning the tide.
  • Divorce — The reality of the rift that had developed. My son and I are on our own. This transition to being a single parent has been rough.
  • Driving Assistance — I am so thankful for the friends I have who take joy in driving me to my injections when needed.  So glad that these tend to be about 3-4 month intervals!

 

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Let’s Own It

Here’s to all of you with chronic illnesses and conditions! During this latest flare (Fibromyalgia, Polyarthralgia, Piriformis Syndrome, IBS-C) plus additional infections (bacterial vaginosis and yeast infection), I looked at myself in the mirror and simply said:

“I am going to make sick look good!”

My chronic conditions have taken enough! I will embrace my “new” fragile self and continue to thank God every day for his strength and courage to allow Him to be seen through my weaknesses.

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chronic pain, hidden conditions, hidden illness

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Hope

It feels like an eternity since I have written a health update!

Again, I must express my gratitude for my pain pump!  It is the reason that my Pain Specialist has been able to determine that I have Sciatica (both left and right side)…. Sacroiliac (right side)…and now Piriformis Syndrome.

A week from Monday, I will receive another injection to calm the Piriformis.  We are working towards improved function of my right leg.  I am sure many of you have dealt with the Sciatic nerve(s) acting up: burning, numbness, tingling, throbbing, stabbing, muscle spasms, etc.  My right leg from buttock to the tip of my big toe has been experiencing these symptoms along with being unresponsive at times –foot will drag or leg will not move when I tell it to.

The issues with my right leg have been a big problem for years now.  I had come to accept this as just one more thing to learn to live with…yet now more layers to my medical conditions have been uncovered.  There should actually be improvement to movement!

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chronic pain, hidden conditions, hidden illness

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Backwards

Chronic conditions take such a toll…stretching us to our breaking point…like a tennis ball on an elastic cord…we are tossed about without rhyme or reason.

We are bombarded by new or worsening symptoms…as we start a medication, deal with interactions between medications, struggle with adjustments to our prescription(s).

Add new diagnoses that further complicate our all ready complex situations…we truly push our medical teams…as they are thrust into the unknown.

The inevitable “Flares” that strike…some we know are coming due to choices we make (like going out to lunch with a friend…attending Parent Night to meet our son’s teachers…a simple short ride in the rig)…others strike for no apparent reason…forcing us to cancel plans…to retreat to the safety of our homes.

It is no wonder that we often feel that we are going backwards…despite our best efforts.

Yet I caught a glimpse of something precious when I paused with my eyes closed…in that short time, I took time to review the past few weeks…months…and saw progress!

I am speaking of those little changes…sitting through a rented movie –actually being able to focus and watch it…no recent falls…sleeping in a four hour block at night.

Take heart! Even when we feel like we are going backwards rather than forwards, we are progressing.

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chronic pain

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The Secret Within

The internal struggle

Forever raging within

The only thing for certain

Is the ever present pain…

Appearances are deceivingsun-beach-st-peter-obi-baltic-sea-163867

Just as a smile hides the truth

The outer shell is a disguise

Causing questioning glances…

The mirror betrays

Reinforcing a false narrative

And reinforcing the changes

A reminder of all that is lost…

Guided by our self knowledge

We do our bestTo follow the narrow path

Strewn with boulders and potholes…

No amount of care

Prevents the impacts upon us

The frustration our family and friends endure

Hurting those most close to us…

Our hidden conditions and illnesses

Attempt to rob us of all

Destroy our finances

Replace what is taken with isolation…

We utilize the tools we have

Each carrying his own set

Medication, exercise, meditation just a few

Combined with family and friend support…

We are united to others

Similar paths shared

A brave front we will show

As we fight an unseen enemy…

 

 

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End of 2nd Week –Withdrawal

It is the end of the 2nd week of withdrawal from Cymbalta. As of yesterday into last night, it became very apparent that part of the nerve pain that I had not experienced in a long time was back with a vengeance. It is best described as needles and ice picks bombarding and attacking all over…especially my feet, hands, arms and legs.

This out of control nerve pain/sensations were definitely part of my original Fibromyalgia/Polyarthralgia/Chronic Pain Disorder symptoms. So, I made the decision that I would resume the Cymbalta today. It has become very apparent that I need to utilize Cymbalta along with my current opioids in order to attempt to reign in my symptoms and pain level.

This combination does NOT get rid of the pain nor all of the symptoms; however, it DOES take the edge off…calms them enough that I can perform gentle stretching during the day. It has been a couple of weeks since I have been able to do any stretching…I have been lucky to curl up in a hot bath…to use the heat to jumble and cause other sensations.

Unfortunately, I will now be paying the price for having taken baths…a path that I know…

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Ringing

Ears are ringing

No escape found…

High pitched squealing

To lower buzzing…

Most days

The constant hum…

When storms approach

The sounds overwhelm…

Turn on music or TV

Something to compete…

The waves of nausea

Inevitably come…

Just as waves

Crashing against the shore…

No quiet found

Even with hands over ears…

With wishful heart

The body yearns for the storm’s passing…

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Financial Stress

I awoke from a light slumber this morning knowing that I had to try to reach out…to speak up about one of the big stressors that can weigh heavily on us. The unfortunate side of chronic illness…how it can destroy our finances. This thought was heavy on my mind  as my body craved sleep.

In my situation, it has taken me out of the workforce. My husband had struggled to find employment…always coming in second when interviewed!  Yet a door was opened for him to start his own business…which we see starting to grow.

In the meantime, as I am sure many of you can relate to, we have had to use credit more than we would normally. The medical bills (that will keep coming), groceries (especially when you add in those of us with special dietary needs), the high cost of insurance, house payments/rent, fuel costs, clothing, shoes for our ever growing kids, and on and on. Even with careful spending…being as stingy as possible…stretching every dollar as far as possible, we see our savings (if lucky enough to have any) disappearing quickly.  We are forced to look at selling our homes, taking out a second mortgage, or worse…find ourselves homeless.

It is important to take advantage of all of the programs possible. Remember, when we were “healthy”, we were working, paying into those programs.  Sign your children up for the reduced/free lunches at school if you qualify, apply for food stamps, seek out other possible assistance programs you may qualify for…this is not easy, I know. It requires a change in our mindset…to see these programs as an opportunity to receive some assistance during a rough spell. You may qualify for just a few…or you may qualify for all. Allow yourself to embrace this opportunity for some relief.

We put on a brave face for our children, our families, our friends. Yet this stress is one that we have little to no control over. It can increase our symptoms, resulting in Fibro Flares, IBS flares, bacterial infections, additional illnesses…causing us to go into a serious health spiral…as if we are not all ready dealing with enough!

Take time for yourself.  Nap if you need to…find ways to relieve your stress. I use writing as my stress relief…I also spend much time praying and reading scripture.  (Reading as best as one can with the Fibro Fog that is so variable…from a thin fog to a heavy veil.) I take advantage of the view out my window.  I find a silly science fiction movie to watch…or work a puzzle on my iPad…distractions that are a huge help!

This is a very difficult path we walk…yet…we are not alone! We can build each other up…through the many on-line communities, whether we choose illness/condition specific or more generalized chronic illness/pain sites. Remember you are not alone…even if you are primarily home bound like me.

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Liars : )

 

Living with chronic pain makes us great liars. 

Ask me how I feel? I will say “Pretty Good” or “Fine”.  

When in actuality I am ready to scream.

vector-screaming-girl

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Enduring a Flare

Pain is not alone

It has many dark friends

Who seek to completely

Overwhelm and envelope.

Our everyday battle

Our usual “symptoms”

Who accompany us

Occasionally changing intensity.

New symptoms do check in

Take residence to cause change

Often with a few die-hard “friends”

Who never leave our side.

The dreaded “Flare”

Can appear out of nowhere;

It can also be anticipated

When we go out or take a trip.

In any case

The wind is taken from our sails

Our minor victories

Seem to be in the far distant past.

We can fall victim

To depression and frustration

To hopelessness and despair

Or chose to view the rainbow.

The slightest distraction

Can assist in our mental fight

As we nurse our battered body

Through the horrific pain.

Do not be afraid

To lift up our eyes

To beg for a brief respite

To allow ourselves to rest.

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