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Posts tagged ‘family support’

Nagging

Miriam-Webster’s definition “to irritate by constant scolding or urging”.

Now let us see, as we turn the mind’s eye inward,

I see the perfect parallel to our path with pain.

We are under the constant scourge

The overbearing pressure

With the constant knowing

That we are no longer in control.

It is not by our own volition

For we did not seek this fight

Nor did we ask for his assistance

Yet here we are, in league and alongside.

We are driven to depths unknown

We see and experience well beyond most

Yet we are driven to continue

To press forward, to endure.

Our path often misunderstood

For no-one except one of us

Can truly catch, or grasp, the meaning

Of our relationship with Pain.

For ours is a hidden path

One that is misunderstood

To bear what is cloaked

Unseen by the many.

We are charged to share

To shine, even a momentary light

To the hidden culprit

Who is urging us forward

Displaying our weakest moments to all.

It is our companion

Our ever present guide

Upon this path we did not seek

This that sets us a part from others.

It is our relationship with Pain

Our hidden struggle

That has forged a strong bond

No longer against….but with.

Prayer

Prayer…it can be such an integral part of our lives.  I know for me, prayer is a vital life line.  It allows me to hand over my fears…frustrations…disappointments…concerns…as well as all that I am thankful for.

We learn many formal prayers….”The Lord’s Prayer”….”The Glory Be”…as Catholics, many more are learned…”The Hail Mary”…”The Apostles Creed”…”The Divine Praises”… I am sure several others have come to your mind.

We also learn to pray informally.  We are often told to use “The Lord’s Prayer” as a template for our own prayers…we are encouraged to use our own words…to speak to God as if he was in the room for us…like we would speak to a friend.

Often we can find ourselves in a rut…saying similar words as if by rote…going through the motions…not really allowing ourselves to open up and speak with our hearts not just our minds.

Many of us were taught the following pattern for prayer (referred to as A.C.T.S.):

Adoration – “Praise be to God!” -Psalms 68:35
Tell God how much you appreciate Him.

Confession – “If we confess our sins, He is faithful and just, and will forgive us our sins and purify us from all unrighteousness.” -1 John 1:9
Tell Him where you have fallen short. Be as specific as possible.

Thanksgiving – Always “glorify him with thanksgiving” -Psalms 69:30
Thank God for His love, His faithfulness, His patience…express gratitude to Heavenly Father, Jesus Christ and the Holy Spirit.

Supplication – “Make your requests known to God.” -Philippians 4:6
Tell God what is on your mind…whether it be for yourself…a family member…a friend…you can also just speak thoughts that you are having.

I know that I often pray informally…yet there are many times…especially when Fibro Fog is thick…or my mind is wandering all over…I find comfort in reciting one of the formal prayers…even if I cannot get all the words correct…it helps me to relax…to shift my focus.

Our Heavenly Father knows our hearts…He knows our needs…He wants us to commune with Him.  Whatever type of prayer…as long as it is from the heart…will be heard.

Decisions

Having diagnoses of Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS-D, Pelvic Floor Syndrome and probably undiagnosed Chronic Fatigue Syndrome and Restless Leg Syndrome, pose daily conscious decisions.

I must consider what may be happening on any given day to determine if I should expend the energy to take a shower…or to simply wet my hair in order to save the energy for a ride to town with my hubby and son.

The feeling of my skin dictates what I am able to wear. After all, wearing a long sleeve shirt vs. a short sleeve with loose sweater/sweatshirt, will either further irritate my overly sensitive chest area and/or increase the stabbing and burning in my arms.

The idea of shoes that have to be tied are, for the most part, out of the question.  I must choose slip on sandals or boots. The combination of having to use my fingers to tie and the effort/energy to put on tennis shoes is too much!

There are many other decisions that we must make each and every day in order to manage our symptoms. (Believe me, I am using the word “manage” VERY loosely!)

The even harder decisions are those that we make with our health care provider(s).  Deciding what type or combinations of medications we will use to try to reign in symptoms. We also must continue to monitor how these medications are doing. We must speak up and talk with our health care provider(s) when we need to increase dosages or to let them know that something is not working for us.  We also have to discuss new symptoms and the changes in current symptoms.

With all this “thinking” we are also dealing with the brain fog that disorients us…makes remembering simple things, like brushing our teeth, to important things like taking our medication(s) a challenge on its own!

We must rely upon whatever “tool or tools” work best for each of us.  Some find sticky notes helpful, some use lists….for me, I have a great Fibro App on my phone that tracks my meds, sleep patterns, symptoms…..and I also use a Note App to jot down questions for my doctor.

I also truly appreciate the fact that my hubby does his best to schedule work around my doctor appointments. He asks the questions that I forget…he interjects and comments on his view of the medications…so helpful to me and to my health care providers.

Attitude

While dealing with chronic illnesses/conditions, our lives and those around us are impacted. Just like everyone, we can bring positive or negative to our relationships.

I know that our illnesses/conditions bring another layer of stress to our family relationships that others do not have to deal with. Our children often have more responsibility than their peers…our spouses are helping with the upkeep of the house…we often are not able to assist…no matter how much we want to!

It is easy to give in to discouragement, frustration, depression…yet, we can continue to choose optimism, embracing the positive joy our children exhibit, being thankful for all that our children/spouses/friends do for us.

It is hard to adjust from doing all for everyone…to having things done for us. However, I have found that in allowing others to do for me….that I have been blessed….blessed with a deeper respect and love for those closest to me…along with additional friendships.

Also, I have found from talking with those near me that they appreciate the opportunity to help. They benefit from being able to help me! WOW! It truly is a two way street!

It is difficult living with our conditions/illnesses…yet, I feel the one thing that we still have control over is our attitude. So each day I choose to have a good attitude!  (Some days I fail…however, I strive daily to choose positive rather than negative….I guess it is my way to prove that Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS-D/Chronic Fatigue is NOT in control of me!)

The Loss of the Youngest Sibling

As we are quickly approaching the first anniversary of my sister’s death, the words kindly spoken to me by a gentleman that also lost his youngest sibling are bringing an entire new set of emotions and thoughts.  He also is the oldest, and he made a simple statement….it is hard on everyone when we lose a brother/sister, however, as the oldest it will hit you the hardest.

I thanked him and took his words to heart…not fully comprehending….knowing that my brothers were and are struggling their way through this as well.  I have read books and researched….my brothers and I have shared information….each understanding that our paths of grief are similar yet different.

The past few nights have brought strange dreams….dreams that take me back to the initial reaction and emotions upon first hearing of my baby sister’s death….that overwhelming feeling that I was supposed to be her protector….quickly followed by the need to go to the hospital to see her boyfriend…to support him…and to see her knowing that I needed to give her hugs and kisses (even though that would be seeing her in the morgue)…then to do everything I could to support and help our parents and my brothers, their wives and our niece…as well as our son…

I find myself again feeling that I must rise to protect my family….her boyfriend…her closest friends….to somehow channel their grief….I can feel it beginning to rise….the rapid approach of May is surely the cause…

I am beginning to comprehend that comment more…it is hard on everyone when we lose a brother/sister, however, as the oldest it will hit you the hardest….as the oldest I want to protect everyone!  I don’t want to see anyone hurting and struggling….even though each of us must go through this journey…..

My prayer is that each of us will continue to find strength in each other…in our Faith…and in knowing that our precious Carrie is watching and praying for us all….each in a unique way….as only SHE can….IMG_3265

(Yes…borrowed from a post from one her very close friends!!)

 

Spending Time

Spending time with our friends and loved ones is often a challenge for those of us dealing with chronic conditions/illnesses. Those closest to us most likely all ready know this…we are intimately aware of our limitations.

We had been invited this week to our neighbors’ church for a Christmas Party. I had really hoped we could attend and was optimistic that with a nap, I would be okay. However, it was not to be! That afternoon I dealt with the worst “blow out” (I have a permanent Colostomy), that left me feeling miserable….So the evening was spent quietly, playing some Uno to help distract from the nasty way my body was feeling.

Yesterday, we went for a day trip. The drive was beautiful! We went to Jackson, Wyoming. It was wonderful seeing all the animals! We were able to see mountain goats, big horn sheep, elk, moose, mule deer, white tailed deer, and coyotes.

Today? Well….as I am sure you can imagine….I am under my heated blanket….hurting….body extremely unhappy with me. LOL

I would not trade yesterday for anything! I know that at this point in time, spending time with my hubby and son can sometimes “cost” a great deal…..however, I consider it worth it.

I do not know how long it will take for my symptoms to calm enough to be considered “under control”…..or to at least be able to say that I am “maintaining”…..

I do know that I am looking at a long-term scenario….years more than likely to get to some type of “normalcy”…

I just cannot wait for my body….I spend most days resting and relaxing as much as I can…with gentle stretching (walking restricted to inside the house only at this point)….then outings when we can with our son (taking full advantage of my wheelchair).

One day all this pain….the frustration of being “trapped” in a once-friendly body….will be a memory. I will one day be able to have low-key activity….to rest to prepare for outings…to deal with “flare-ups” and not living with constant “flaring pain”….

Mobility Frustration

It is going to happen sooner or later….it happened to me today….

I am dealing with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder not to mention IBS…and found on-line the 100 point CFS/FM scoring system. (I score 15…..which means I am severely limited….hardly mobile….walk to the restroom and back to my chair tires me out…..so when out and about I must use a wheelchair.)

I do not feel good enough to drive most of the time so rely upon my husband to do the driving….then I rely upon my hubby or son to push me in my wheelchair.

Don’t get me wrong! I am so thankful for my chair! It has allowed me to go out and about….I can go to the stores with my hubby and son or other family members.

The down side….is the loss of independence that I have been dealing with. I cannot just get in the car and go for a drive (those days are few and far between…and then it is a short few minute drive)…..Christmas is coming….how can I be sneaky? LOL

Our last stop for the day was the grocery store….I rattled off the few items we needed…..however, when we reached the baking aisle our son grabbed the one item we needed….my husband turned me around just as I had a thought “wonder if they have the special flour I need”. Of course, I got frustrated….

Just a simple thought….I could not act upon it without having assistance! That is the frustration of losing mobility due to these “hidden” chronic conditions!

These conditions do not go away…..there is hope for improvement….but I will never be the person that I was before….I hope and will continue to work with my doctors to improve to become the “best that I can be”! Just a small goal of being able to go to the grocery store on my own without being worn out for two days!

Frustration with our limitations is inevitable….and even if we are able to master it most of the time….there will come those moments when it will win! Not for long though! Be sure to apologize and move your thoughts beyond where you are at at the given moment….it might mean doing further reading or visiting your favorite on-line support group or blog…..

Switch gears and appreciate those around you who are there for you…..give yourself permission to rest…..to be patient to discover and to build your new self.

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