Embracing life with chronic pain and illnesses.

Posts tagged ‘Chronic fatigue’

A Glimpse of the Unknown

Chronic illness and pain often leaves us feeling like we are driving a hazardous road in the blackest of nights in blinding snow.

I hear the tumultuous waves crashing nearby. My knuckles are white as I clinch the steering wheel ever tighter.

My body is overwhelmed, yet again, with increased stabbing pain and extremely overly sensitive skin…I am counting hours to my appointment tomorrow. A much needed refill to my pain pump and discussion of my latest MRI.

In the early morning hours, as I laid in bed feeling the pain ramping up, I prayed for a touch of relief…tears could not help but fall. I was granted a little more than an hour’s fitful sleep during which I was given an awesome dream.

I dreamt that I was clinging as tightly as I could to a rock as a storm raged around me…pounding pain, large hail stones striking exposed skin, winds whipping and tearing around me…every pore seemed to be screaming as the pain within was rising to the symphony around me. Then I opened my eyes to see that I was clinging to Jesus, his back taking the brunt of the forces.

I awoke with a renewed sense of hope…looking forward to tomorrow’s appointment…knowing that I am truly not alone…that my prayers are being heard.

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Living “With” Fibromyalgia

Receiving the diagnosis of Fibromyalgia often takes a long time.  Every other illness/condition must be ruled out, or added to, our list of diagnoses.  After all, Fibro is rarely a lone diagnosis; it can be the primary or secondary, irregardless, the diagnosis of Fibro is a life changing event.

There are many ways that those with Fibro are treated…antidepressants, pain medications, alternative therapies (like acupuncture), chiropractic care, etc.  Some of us have extremely hypersensitive systems that greatly restrict what our medical team can prescribe or do for us.

Fibro does not manifest itself the same in each person; it can range from a slight inconvenience to overwhelming…meaning some can manage Fibro and continue with a normal life, whereas others are forced to quite jobs and become homebound.

There are 100 symptoms of Fibro.  Just as some people experience a handful of symptoms, others experience 25 – 50,  and still others will experience close to, if not reaching, all 100!  These symptoms do not hit all at once…the symptoms of Fibro can change on a daily, weekly, sometimes hourly basis.

When diagnosed with Fibro, we often fight our condition.  It is a challenge to learn how to deal with the symptoms, that can be overwhelming….fatigue, burning, numbness, tingling, brain fog, headache, stabbing, throbbing, cramping, muscle weakness, etc.

It also takes time to truly understand that Fibro is a condition that will not go away…there is no cure…the symptoms can improve and then flare at any given time.  Sometimes we can understand what we did to cause a flare, other times we can not make any sense of it.

We do eventually come to terms with our condition.  We learn to live with Fibro.  We accept the life changes it has forced us to make…we learn how to limit our activity and maximize rest in order to minimize our symptoms.  We see that we our definition of living has changed to adapt to our condition.

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7 Weeks Post Op – Pain Pump

First of all, I want to remind everyone with one or a combination of our conditions, whether you are dealing with Fibromyalgia, Chronic Pain Disorder, Chronic Fatigue Syndrome, Neuralgia, etc. do NOT book more than one doctor appointment in a day…especially if one is with a Psychologist!

Our bodies before our illnesses/conditions is NOT the same.  We are now living after a diagnosis or combination of diagnoses.  My new rule of thumb…if I find myself thinking, “in the past” or “I used to” and then _______ (fill in the blank)….I will take that as a red flag and stop.  I am NOW in my NEW reality.  In this reality, there was no “in the past” or “I used to”.  I will also use this red flag to alert me that I must do something different…or something that might not make sense to someone else…like…NO multiple appointments unless it is absolutely necessary.  IF multiple appointments are required, someone else will drive; and, I will be in my wheel chair the entire time.

As you guessed by now, I had to drive.  Thankfully, my son was with me or this combination of appointments could have never happened!  He had to wheel me in my wheel chair after all! LOL

I digress…forgive me!

At 7 weeks now with the pain pump, I went to the pain specialist for another adjustment.  My extended release opioid had been cut in half…and with this adjustment our goal is to completely remove the extended release opioid.  I still have a fast acting 75 mg opioid that I am allowed to use twice a day if needed.

My incision areas are both healing very nicely!  I no longer have to use the brace and am allowed to move my upper body…limited bending.  Still not twisting or stretching…that will come soon!

My pain specialist and I are very excited at this point as we are now entering unchartered territory!!  For me…I have never been able to have the “edge” of the pain so well controlled.

Here I need to interject an important note.  Pain is just one piece of our complex health situation.  The extreme fatigue, electric shocks, brain fog, numbness, tingling, etc. are STILL present…will ALWAYS be present in some form or combination.

I am learning that I must now set strict time limits…plan my activities more carefully…provide myself more rest time.  My symptoms have been “artificially” changed.  I am SO thankful for this change….I am SO thankful for my pain specialist…for my pain pump….for this NEW leg of my journey.

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Attitude

While dealing with chronic illnesses/conditions, our lives and those around us are impacted. Just like everyone, we can bring positive or negative to our relationships.

I know that our illnesses/conditions bring another layer of stress to our family relationships that others do not have to deal with. Our children often have more responsibility than their peers…our spouses are helping with the upkeep of the house…we often are not able to assist…no matter how much we want to!

It is easy to give in to discouragement, frustration, depression…yet, we can continue to choose optimism, embracing the positive joy our children exhibit, being thankful for all that our children/spouses/friends do for us.

It is hard to adjust from doing all for everyone…to having things done for us. However, I have found that in allowing others to do for me….that I have been blessed….blessed with a deeper respect and love for those closest to me…along with additional friendships.

Also, I have found from talking with those near me that they appreciate the opportunity to help. They benefit from being able to help me! WOW! It truly is a two way street!

It is difficult living with our conditions/illnesses…yet, I feel the one thing that we still have control over is our attitude. So each day I choose to have a good attitude!  (Some days I fail…however, I strive daily to choose positive rather than negative….I guess it is my way to prove that Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS-D/Chronic Fatigue is NOT in control of me!)

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Wrestling Match

I am likening the past several days….the past several weeks…actually could say this past year….to a wrestling match!

Each day brings a “new” opponent….some are much stronger….larger…others appear to just toy with me….

The challenge of taking on each day is draining…what little energy reserves are available are quickly taken…

Yet I continue to wrestle with whatever symptoms are attacking on any given day….mental resolve is taxed…..

Yes…there are days that are much harder than others…..when it feels that my body and mind will break….

At those times, when praying….God always finds a way to help restore some mental strength…

It can be in the form of our son and his crazy actions….an email….a text….a phone call…..or our dog gently placing his head on my lap….as if he could feel and understand my pain…

The overwhelming aches….the throbbing and stabbing sensations throughout the body……the muscle spasms…..the headaches….the burning….the intense Fibro Fog….the extreme fatigue…

These continue….each and every moment…..

Yet…there will come a day when I will find some sort of relief….some type of reprieve…if only for a short while…

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The Trials of Work

Just as my body started to settle down, I had to assist with the company safety meeting. It meant a sixth workday……even though I could get up and move around (which I did frequently)!

That extra responsibility…..found me home relaxing on the couch this afternoon and evening. Sensations going crazy throughout my body…..arms burning and aching terribly! I did sleep….however, I woke many times due the aching.

Today I had to just rest. My body would not allow me to do much at all today. The big accomplishment was having my son help me make meatballs that we placed in the slow-cooker for dinner. He had so much fun mixing and forming them! And it was a HUGE help for me!

Now….I hope that today’s rest and sleep tonight, will give me a bit of relief for the start of the work week.

The last of my blood work will be done on Tuesday morning. I am so ready! Anxious to find out what additional information my doctor will obtain.

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