Embracing life with chronic pain and illnesses.

Posts tagged ‘families’

Living with Chronic Pain Conditions

Words cannot explain the feeling of pain throughout the body…day and night. No positions help relieve.

Hard to express the feelings of dealing with this every day…minute…hour…month…year. It is all consuming!

I praise God for strength that is given to make it through the day. I focus on my family…wonderful Hubby, son and step son!

It is so unreal! Why so much pain and suffering? Yet you Our Lord went through so much more!

I praise God for each day and enjoy every moment with everyone!

Loss and Dispair

I am reeling from the news of my sister-in-law passing yesterday.

I am a jungle of feelings, lost and torn.

Having to call my Son to give him the news. Not being face to face to hold him as he cried.

Knowing he will see is Uncle soon helps.

We just cry out “WHY”!

Precious Memories

It was 5 years ago today that my parents received the call. Carrie and Billy were in an accident. Carrie died at the scene and Billy was in hospital. All I could think of was getting to the hospital to see both of them! Just wanted to give Billy hugs and talk or sit.

Ally was able to meet me at the hospital to go in and see Carrie. Very emotional yet so reassuring! We could both tell that she is in heaven and just a shell remains.

Her Celebration of life and burial were amazing! All of those whose lives she had touch! Those from the law firm where she had been hired arrived in a bus! So many friends and family! Truly touched me.

Fast forward to today.

Our hearts will feel heavy today as someone so dear so endearing would be taken from us.

Yet Carrie’s legacy is living on through our memories, pictures, stories and her Memorial Scholarship awarded each year by University of Oregon Law School in her name. Students learn about Carrie and for 3 years now have been award the scholarship in her honor. Each one is touched by Carrie and so thankful!

I love seeing her picture and that smile! I will always hear her laugh and voice in my heart. She is part of us and always be so!

Love you forever and always Dear CareBear…

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.

So Many Changes

The hidden illnesses and conditions that ravage our bodies…force major, and sometimes, drastic life changes.

We find ourselves homebound…no longer free to come and go as we please.

We used to have great jobs…now we are lucky to get out of bed and get dressed.

Exercise used to be easy…a jog, climbing stairs, lifting weights…no more.

Gentle stretching is now the most activity we can handle.

The throbbing, stabbing, and deep aching never leaves.

We cannot remember a good night’s sleep…thankful for 3-4 hours in one block.

We deal with symptoms we could never have imagined.

Our bodies are no longer our own.

We are now trapped within a stranger’s body.

We now speak in half truths…protecting those close to us.

We are forced to become our own advocates.

We learn to battle with insurance.

We never know how we will feel…how intense our symptoms will be.

We live with disappointment as we must cancel plans last minute.

We struggle with self image…no longer the person we were.

We struggle with our memory…with “Brain Fog” or “Fibro Fog”…casting a thick veil…making coherent thought impossible.

We cannot remember words…we stall…grasping…struggling…only to blurt out something incorrect.

This is just a few…of the many changes….those of us with chronic pain/conditions must learn to live with….to adjust to…as we adapt to our “new normal”.

Change is in the Air

The colored sky hints

The chill in the air confirmsimg_6775

Change is in the air…

The graceful leaves

Dancing to the ground

Change is in the air…

The vibrancy of colors

Overtaking the green

Change is in the air…

Summer is giving way

To the golden hues of Autumn

Change is in the air…

Freshness of the Morning


img_5646The early morning light

Peering out between the clouds

The freshness of the breeze

Gentle against the skin

Like the touch of a loved one

Eyes close to savor the moment

The call of birds

The buzz of a lazy bee

The gentle roll of a fish

Its scales glistening

The water around gently rippling

Followed by silence

The quiet of the early morning

Senses aroused by the freshness

As nature awakens…


To List or Not To List

It has been interesting along my path of chronic illnesses/conditions to interact with others like me. Invariably we exchange tips…tricks…hints….hoping to help prevent some of the frustrations with which we find ourselves…the brain fog…the extreme fatigue…plus all the pain…burning…etc…

One Fibro friend swears by sticky notes.  She uses them at work…at home…in the car….they really help her to remember where she left off on a project…keep her on track with what to get at the grocery store….help to remind her to get her purse before leaving in the car…it is a system that has greatly helped improve her confidence.

Another one that several people have suggested are making lists.  One friend likes to make a list at the beginning of the week of everything she would like to accomplish.  It is not hard and fast…it is what she would like to attain. Throughout the week she marks off what she is able to accomplish (it could be things like vacuum, grocery shopping, folding laundry, read a book, walk around the block each day…etc.) This has increased her confidence in that she can visually see what she has accomplished in turn increasing her confidence as well.

Another friend of mine uses lists in a different manner.  She keeps a notepad in the kitchen where she can write down any needed grocery item. She has also opted to make a short list of goals for the week which she posts on her frig for motivation.

I know prior to quitting my job I was using the sticky notes….I would have to jot down or mark where I was….the smallest interruption would disorient me SO much! LOL

The idea of lists do not work for me. I have worked with people in the past that had to have lists for everything….I could understand this type of organization and could see how it would indeed be helpful.  After all, the ways in which lists can be used is so versatile.

I attempted one time…years ago….however, I found that it made my “Type A” personality flare! I could not stop until everything on the list was done! To this day, just the idea of making a list makes my head spin! I can feel myself almost instantly wanting to struggle…a struggle that I do not have any energy to fight.

I have been able to finally adapt a little of the “list” concept….by using the task and the note apps on my cell phone…I have been able to trick my brain!  I have successfully made short notes of issues to bring up with my doctor (we all know how quickly we forget a thought)….and when I remember…I can jot a few needed items on the tasks for the grocery store when I go with my husband….

One thing I have found though….in regards to grocery shopping….I will verbally relay a few items we need (say eggs, soy milk, rice milk…)  Then my brain just stalls….I cannot think of the words….so when my hubby is pushing me in my wheel chair, I now watch for the visual clues….I see the canned tomatoes…and can say….”Hey, we need some tomatoes”….

It is reassuring to know that somewhere….hidden…in my now scattered brain…..is the me that was so detailed….that had no reason to make a grocery list because it was all on the tip of my tongue….now it is just in the pictures!  (Thankfully…my hubby is patient….and he has learned that I just need to go up and down the aisles for my cues!)

“Baby Steps”

As I recently found on the web….the perfect description of me:

“Fibro victims tend to be over-achievers. We have had unrealistic expectations of ourselves all of our lives. It’s time to get real. Set some new goals. They don’t need to be large- just realistic. Instead of cleaning the garden, weed one flower bed. You don’t have to be perfect. Ignore anyone who tries to make you feel guilty. You can only do what you can do.”

LOL!  I bet there are many of us that can relate to the above statement!

I am SO battling the “over-achiever” in myself as I attempt to take the “baby steps” necessary to attempt to help my Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS…

I am forcing myself to spend 2 minutes on the elliptical….today I found that I did 3 minutes….and YES…I am paying for it all ready!  It is true!  Must keep the 2 minutes a day for a week….that is until it can be handled each day for a week!

It is SO hard to not do more!  My mind has still not caught up with the realization of the fact that my body WILL NOT do what it used to!!  There is NO pushing through this!  This type of chronic illness does NOT allow pushing through!  If you attempt to push through, you will find that your body completely revolts and you will be down for at least a week!!!! (Yes…I am speaking from experience!)

I find myself asking myself WHY?!?!?!  WHY is it SO difficult for me to step back….to slow down…..to ACCEPT where I am…..to ACCEPT that I will need to completely reshape MY reality!

I am working hard at giving my body the rest it needs….at attempting to perform simple exercise…..to continue with my gentle stretching….to allow myself the down time that is required….for however long it takes……

I know that I WILL regain some semblance of normalcy!

The Light of a New Morning

Disappointment rears its head

We know not when

Its causes are many

A trip to the doctor

Pain not responding to rest

Innocently overdoing

Then having to change plans.

We struggle with frustration

Knowing that we have

Conditions not understood

Complicated by each of us

So different….so unique

Fibromyalgia affects each of us

In so many ways

Some endure a few symptoms

Some endure a handful

While others endure them all.

There is no reason

There are theories

Prior injury, traumatic event, stress

Just theories…ideas

No concrete answers yet

So much unknown

Yet we pursue

Each of us on a path

Some similar….others not.

We must attempt many options

Trial and error become close friends

Many appointments

Much research and reading

Then we are blessed

A solid night’s sleep!

We awake to

A new beautiful day

We bask in the morning light

We embrace the path before us!

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