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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!

Balance?

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!

 

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