Embracing life with chronic pain and illnesses.

Posts tagged ‘hidden condition’

State of Disbelief 

I awoke today

With my mind a blur…

Looking at you

Your picture behind glass…

Waves of emotion

Well up from within…

Hit again with the reality

That you are with Heavenly Father…

My mind fights reality

As I want to awake…

Awake from this dream

To once again have you with us…

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!)


We Are Unique



In the middle of the night after a day of dealing with those “electric shocks”….that feeling of being jolted with electricity and the falling sensation that follows…..it occurred to me that the one thing that those of us with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/etc. is fear.

We do our best to hide any notion of being afraid…we put our brave face forward for our family, friends, coworkers…especially for our children.  We do this also for ourselves!  We keep a positive outlook….positive distractions to aid in distraction.

Yet fear is very real for us!  I face it head on each and every time I deal with those “electric shocks”…..I face it when I am unable to recall my train of thought….I face it when I cannot remember…..I face it as I struggle to understand these conditions that have taken over my body.

All that can be done is push forward….face the fear…..accept that it IS scary….it is VERY scary to be dealing with conditions that are so misunderstood….or rather lack of medical knowledge of our conditions.  Dealing with such odd symptoms….to look so well….so healthy on the outside….yet to be SO messed up physically!


I have experienced so much during this struggle with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/etc.

IMG_3274Yet I have found the most wonderful blessing hidden within this!

The best gift ever….from my Sister-In-Law…the wheelchair obtained for my Baby Sis Funeral!

This chair has seen me through the lowest of times! It is ever with me….allowing me to be out and about with my family.

It has also opened SO many doors!  People stop and share their stories with us….they share a smile….a laugh….a tear….

This chair has become a wonderful opportunity to interact with individuals who would never let on that they too have battled….have dealt with health or other issues.

I was reminded of this again today when we stopped into a small local shop we had not yet visited.  Upon seeing me, the owner immediately started to relate….to talk about his struggle….to offer me support…..

I am beyond humbled….and SO thankful for the hidden blessings in this condition!!

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