Embracing life with chronic pain.

Posts tagged ‘Chronic Fatigue Syndrome’

The War Within

Just as the thick cloak of nightIMG_7978

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…

 

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The Unseen Hand

IMG_7697The leaves shimmer

Moving up and down

Reflecting the brilliance of the sun…

Suddenly the branches join in

The smallest of movements

Grow into waves…

The hammock begins to sway

Gentle movements encouraged

By the unseen power of the wind…

My mind is drawn to a parallel

Of how our lives are influenced

By an Unseen Hand…

Some welcome the influence

Yearn to draw it closer

To strive to feel the push and pull…

Some are caught off guard

Stretched to the limit

To attempt to believe the unseen…

Still others are like stone

Unable to feel its touch

It goes unheeded as if not there…

The evidence is all around

It is in the smallest grain of sand

To the brightest star in the sky…

We need just close our eyes

And quiet our minds

To feel His presence…

 

The Fatigue of Fibromyalgia

As I have referenced in a prior blog, I recently really overdid it.  It was an innocent mistake that many of us with chronic conditions/illnesses have probably made.  In setting up appointments, I scheduled two appointments on the same day thinking that a combined trip would save energy and time.  I knew it would be more tiring than just one appointment, but it couldn’t be that bad…right???  Well…WRONG!!!!

My first appointment was with the psychologist…an hour long session.  Much needed, as we are working through the frustration and isolation that my conditions cause.  We have been working on some great new tools to add to my arsenal.  I have come to really appreciate this addition to my medical team.

After that, it was time to head to the appointment with my pain specialist.  We had a bit of a wait, which was good as I could tell I was getting a bit tired and needed to gather my second wind.  Once we reviewed the past couple of weeks, the adjustment of my pain pump was complete, and we were headed out of the office to fill a prescription.

While waiting for the prescription, we did a small amount of shopping which included picking up an easy fix for dinner…meat skewers for the grill.  After a short wait it was finally time to head home.

Once home, I could feel my body saying enough…so I did go to bed early so that I could get off my feet.  The next morning was hard to wake up…and yes, I did sleep in.  However, even though my eyes were open, I was still asleep.  It is that deep, heavy fatigue that envelopes the entire body.  I could do nothing but recline in my chair or lie on the couch.

I did muster enough energy to attend a friend’s BBQ for a couple of hours.  I just could not bring myself to disappoint our son…who was looking forward to seeing several of his friends.

The next day of course, was another day of heavy fatigue…just not quite as thick as the day before…but close! My brain was blurry; and, I completely lacked focus.  I was again resting in my recliner, lying on the couch…and went to bed very early as my body was just done.

Finally, awaking on the third day, I am feeling more of “my” normal.  That is if you can use the word “normal” in any type of description of those of us with chronic illnesses/conditions! My energy reserves are still extremely low so today will be a day of rest…reclining in the chair and will include a nap in the early afternoon.  By tomorrow, I might be able to take a shower!

It is hard to describe in words the fatigue that comes with a chronic condition/illness like mine.  A healthy individual will automatically think, “Oh yeah…I know exactly what you mean…like when I have had to work an 18 hour shift.”  Well…you must magnify this by at least 10!  (Yes…probably being quite conservative.)

The “fatigue” that hits us when we overdo…even slightly…completely strips us of the ability to function…it is, as I described, like a thick blanket that tightly wraps around us…all senses are numbed…we see…but we don’t see…we hear…but we don’t hear.  We are unable to form a sentence…it takes all of our effort to just sit in a chair…all that we can truly do is lie in bed and hope that sleep will come…as we melt into the mattress.

No matter how carefully we try…fatigue will hit.  When it does, all we can do is give in and allow our bodies the chance to recuperate and to recharge…read if you can…watch a silly movie. Smile and relax…know that it will pass.

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.

Listen to Your Body

The most difficult thing we learn with chronic illness/conditions is to listen to our body. It does not happen overnight…it takes time…and going through the cycles…then one day you awake to find yourself recognizing the pattern.

I have finally recognized not just one…but several patterns.  The most challenging to me emotionally is the following pattern: long lasting flare (3-4 weeks); severe bladder infection; extreme fatigue; head cold; extreme fatigue; back to my “normal” — resulting in a cycle that can last a couple of months.  Another pattern: flare (1-2 days); extreme fatigue; back to my “normal” — a cycle that will last 1 to 1 1/2 weeks.

Being able to recognize what is happening and what will possibly (or probably) happen next, can allow us to shorten the cycle. No, not always, but it does some times. At the very least, it can calm our minds and lessen our feeling of guilt as we give ourselves permission to rest…take a nap…ask our spouse to bring home pizza…allow a friend to bring over a meal.

It is also important to verbalize what is going on to our immediate family members. I have found this helps our son a great deal! He is reassured and very supportive when I open up…let him understand what is going on and that it is temporary.

Don’t get me wrong, it is still frustrating…we can still wrestle with guilt…as we lay low…allowing our body to rest…using whatever treatments work for us (hot baths, hot tub, sauna, heating pad, etc.).

Take your time…listen to your body…and, most importantly, be patient with yourself!

Self Confidence

One of the biggest challenges in addition to dealing with day to day pain is that of self confidence.  Just think about it!  We are battling constant pain…we can no longer do things we had taken for granted (anything from work to exercise to playing with our kids)…we struggle with our memory and thinking process…some of us like me, have had body alterations (for me a permanent colostomy) that we are thankful for, yet impact our body image…we look fine on the outside yet we know just how badly we are impacted by our conditions/illnesses….the list could go on and on…

The ultimate result? We can find ourselves looking in the mirror before or after a shower and find ourselves feeling hopeless…ugly…fat…you know what I mean! We each have our negative demons that we fight…

This wave of negativity usually goes away pretty quickly…sometimes we have to put a lot of effort in to the fight….other times a distraction (like hearing our children laugh) will help to snap us out of it…

I also know that our lack of confidence can be impacted by the way we dress. If you are like me, you wear loose fitting clothing…I do so because of the pain that the pressure of clothing causes on the skin as well as the fact that layers or loose clothing hide my appliance.

Just know that struggling with self confidence is normal! It is not a sign of weakness….it is part of being human! We are struggling on so many fronts it should not surprise us that our self confidence can take a beating as well!

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