Embracing life with chronic pain and illnesses.

Posts tagged ‘families’


The idea of balance and Fibromyalgia….a thought I am still trying to get my head around! LOL

I have been reading…researching…doing my best to fully understand to grasp as best as possible a better understanding of my chronic conditions.  The combination of Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/Permanent Colostomy and who knows what to be officially added!  LOL  (Those with Fibro and its related conditions understand my tongue in cheek!)

I continue to come across the same paradox…..we are to exercise to relieve the pain…to increase our ability to have the restorative sleep that our bodies so desperately need.  Yet by exercising…we hurt (often a day or so later)….our fatigue is increased….coordination is thrown out the window….and on and on.

How to tackle this concept of “balance”?  Especially if you are like me….when a simple ride to town to go to the store (about a 15 minute drive there then back again)…even using your wheelchair and carefully walking from the front of the car to your chair (while using the car as balance)….leaves you completely exhausted!

I know that there is no simple answer….there is no “miracle” cure….there are so many different medicinal options/combinations as well as supplements.  I am one of those that cannot have most of what is out there that doctors will prescribe! I am also very limited as to supplements….my overreactive system prevents the use of something as simple as Tylenol!

So…until I have my appointment at the University of Utah….I do my best to get some movement….some stretching….while resting…reclining.

I have ordered a DVD on Tai Chi for beginners….that has options from seated to standing….I have read where this gentle movement…stretching routine has helped many other Fibro sufferers.  I will test this out….

Above all I know that coming to some type of “balance” will take a long time…this will be a long….slow trek….patience will be required.  Patience with myself….with my conditions…

Just take heart….if you are newly diagnosed….or find yourself severely limited as I do…Fibro is a dictator…that is for sure!  However, as any dictator….it will fall!  Each of us will be able to find that “balance”…..

Whatever that “balance” is for each of us!




The soft white blanket of snow

Reflects the quiet and peace

My mind desperately requires.

It envelopes all

Just as when wrapped in my heated blanket

The warmth soaking into my being.

The beauty that surrounds us

Cloaked in this thick white coat

The sounds only of snow falling from the roof.

The sky reflects the color of the ground

With the slightest hint of sun behind

A small sliver of blue playing hide and seek.

Perfect sight for an exhausted body

Sleep that was intensely illusive

My mind relaxes at the sight.

Further Insight

I gained further insight this morning! A breakthrough for me. I am finally realizing that I am struggling with being unproductive!

Before my chronic conditions forced my departure from the workforce, I was the primary income for our family.  My husband’s attempts to find employment were met with odd jobs here and there while trying to grow his fish taxidermist business.

I was working full-time, teaching 4/5 grade at our Parish, and assisting with the Altar Servers.  All of which I gradually had to let go…until I just had to disappear from them all!  I could not even attend Mass!  Sitting quietly would increase my pain level so much that I would have to lie on the couch the rest of the day!

We have moved which has helped the stress. Our son is thriving in his new school.  My husband has job opportunities.  My health has not yet improved. I know that my conditions are extreme at this point in time. I realize it will take years for my body to settle enough that I can form what will be my new life pattern.

I now understand that I had mentally come to terms with this, yet I had not done so emotionally!  Just as I am still grasping the reality of life without my Baby Sis!

This emotional toll is what I am feeling now….it is as if I am now comfortable enough in our new place to allow my guard down. Enough that my emotions are attempting to show their head.

This places me into an internal struggle! My “inner self” is now trying to protect me. This is the reason that my sleep has been so negatively impacted these past 4 days!

Once I realized what was happening, I paused to thank my “inner self” for the protection. And reminded myself of the wonderful, safe place we are in now. The positive impact it is having on us all!

Now I must attend to those feelings of negativity! That of feeling unproductive, of feeling useless. Writing this is all ready helping! It is lifting the heavy weight that I had felt.

I know that this is temporary….even if it lasts a period of time….say 2 – 3 years. I am doing all I can in the mean time….as I Blog, share my feelings, sit with my son as he does his homework, text/email those close to us, place calls when I feel well enough, say prayers (many times) daily….remind our son of his Faith of the Church and the wonderful meaning of Mass.

I will be able to attend Mass in the future….I will be able to offer some form of service….for now though….I understand that I must allow myself to recover as best I can.

For now I must embrace the emotional side of my chronic conditions!  Just as I am embracing the emotional side of life with my Sister’s physical absence.

A Son’s Disbelief

Our 11-year-old son gives me hugs which I love of course! However, last night while sitting in the office with him as he was doing his homework he said something that completely took me aback.

Since I cannot sit very long, I usually spend some time lying on my back on the floor….or fidget around….shifting my arms and legs. I must have made a slight sound as my son turned to me and asked if I was okay. I said I was fine. He promptly responded, “No you are not!”

I reassured him that even though I was not feeling very good, that there would come a day that my pain level would be better….that I would have better days. To this? His response was “Will that REALLY happen, Mom?”

I again told him that it would. That it might be one, two or more years down the road…but that day would come.

He still did not seem to completely believe but was satisfied with my answer. After another huge hug, he returned to his homework.

This is the “kick in the gut” that I as a parent with a combination of chronic conditions must “deal” with. I know that I am not alone. Each of us had had this moment with our kid(s)!

It is the added responsibility…the extra push that forces us to feign a smile…no matter how we are feeling! Even when our kid(s) can see through the charade!

Pain = Nausea

Well…not ALL the time!  Just some times….yet when it hits….it really sucks!!!!!

As if dealing with chronic pain (Fibromyalgia, Polyarthralgia, Chronic Pain Disorder) is not enough……there are those days….like today….when my IBS is caused to flare….tying my stomach in knots….feeling so nauseous that all I could do was lie in bed….and hope it would pass soon!

The intensity subsided within 3-4 hours…however, that nauseous feeling is still present…..now accompanied by the Electric Shocks….not to mention the fact that I cannot get warm!  LOL

I know this will pass….these symptoms will morph into my more usual and customary “companions”……..

Just know that the nasty sick feeling in your stomach is NOT in your head…..it is a direct result of your system being overloaded with the pain signals that it is interpreting…..at times it just becomes so overwhelming that your entire system will give in……thus the title…..Pain = Nausea…..

Mind Set!

When dealing with Chronic Pain or Chronic Illness…we must first start at the beginning! Is our mind set on “dealing” or rather working “through” our current health challenge????

If we answer anything other than “working through”, you are need of additional help!  As difficult as it may seem….if you feel that you are “battling”….”struggling”….then I know you will benefit from working with a therapist!

There is NOTHING wrong with YOU!  IT is the space you find yourself in!  

During our “struggle” there are times that receiving assistance from others…like  Counselors or Psychiatrists, provide a HUGE benefit to our mental and physical health!

The point that I want to reinforce is what I heard from the Psychiatrist I saw today……

If I use the word “battle”….I am fighting…..

If I use the word “working through”…..then I am embracing my experience….that I am taking ownership and “working” through the emotions involved to move through the experience….

Do NOT take me wrong!  I am not for a second taking any minute or SECOND of this struggle for granted!!

The difference is truly…your mind set!  Are you “fighting” what is happening in your life?  Or…are you “taking in”…and trying to “place”….to “SEE” how what is front of you….might fit?????

THIS IS the hardest path!  HOW to “see” the path in front of us…….

True Thoughts of Loss

What are the “True Thoughts of Loss”?  Really???  It TOTALLY SUCKS!

Truly!  The loss of someone so close….especially in such a sudden tragic way is VERY hard…..

Even with Faith…with belief in a higher power….realizing that God IS God….

It is STILL difficult!  It is just Faith that helps….it gives the strength to know that there IS some greater good…..a good that is BIGGER than we are….that is outside of us….that we cannot see….

We cannot see this BIGGER good because we are TOO close!  We are TOO close to the origin!

I guess that is the TRUE secret!

The knowledge and the true HOPE that our BELOVED has somehow bridged the gap…has SOMEHOW impacted lives in such a way….that even in his/her death….the result is a GREATER impact on ALL those around him/her!

In my case….I have had the TRUE pleasure….the TRUE blessing….of seeing FIRST HAND the HUGE impact that my Sister had on the lives on those around her!

My Sis….is a TRUE living testament to a LIVING…BREATHING…God…..

Thank you Lord for holding my Sis Close!!!

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