Embracing life with chronic pain and illnesses.

Posts tagged ‘spastic sphincter’

Thoughts…

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I see the signs of Autumn all around…..sitting in my chair the leaves have turned a deep yellow….and find themselves whisked around by the wind.

We are in a new area….looking forward to the sights that each of the Season’s will bring….

The crisp cold air….is refreshing….occasional covering of clouds high above….

There is SO much life in the high desert area in which we live in Southeastern Idaho!  It is vast….it is beautiful!

This new adventure is a great distraction to the day to day pain that dictates my every moment…..

Day To Day

It is hard to explain the day to day of someone dealing with chronic pain/chronic illness.  No one understands…..these chronic conditions are always present…..they do not go away….there is nothing we can do to improve our day to day……

My Fibromyalgia/Polyarthralgia is STILL trying to dictate my life!  Today….it was amassing an amazing attack!  I could feel my body from head to foot…..my hands were cramping…..my legs and arms were spasming!  My feet hurt SO bad I could barely put pressure on them to walk!

SO frustrating!  It has not always been this way!  Yet this is how Fibro/Poly wants to show its control!!!!

I have been reading….and am anxious to learn more from the specialists that I see this week.  I am NOT willing to step aside….I am not willing to yield to this pain that is overwhelming me……

Somehow this HUGE struggle that I am enduring will be a benefit for someone……I do not know how or when….I just hope that someone….somewhere….will NOT have to go through this horrific ordeal!

I just cannot find the words to express the physical pain….the emotional tole…..that these chronic illness take.

The “normal” person has NO idea!  I guess….to those that have never experienced chronic pain/illness…..I can only say….close your eyes…..

“Yes…relax…..now envision your entire body aching…..throbbing…….imagine someone sticking icepicks all over your body in random places……

now….feel a massive burning sensation……can be your right or left side…..just imagine…fire engulfing your body……and someone sticking icepicks in your body…….

now add an intense heaviness…..that feeling of when you are asleep and dreaming…..a nightmare….from which your body will not awake……..

let’s add a knife stabbing….cutting through your calf…….now your hip….”

You….the “normal” STILL do not have a clue as to the day-to-day struggle that those of us with chronic pain/illness deal with on a daily basis!

The difference?!?!?!  YOU would never know!

WHY???  Because we smile….we do our best to go through our day to day “musts”…..we do the best we can for our families…..we give ALL we have!!!!  We give it ALL to those that are closest to us….our spouses…our children….

The HORRIFIC battles we wage EVERY day are battled INSIDE!!!!

On the OUTSIDE we appear “normal”….yet….in reality…….WE are ANYTHING BUT!!!

To those….like me….battling…..HANG IN THERE!!!!  WE WILL make it!  We WILL see a better tomorrow!  Even if that tomorrow is a month….a year….a decade from now!

Those Darn Drug Commercials!

I am writing this for family and friends of loved ones dealing with Fibromyalgia….
Watching TV you would think that Lyrica or Cymbalta is a cure all drug….that it will allow someone suffering from Fibromyalgia to have a “normal” life….
This is simply not true! As my doctors have told me….Lyrica is a last resort drug….the side effects are great. As for Cymbalta….I am grateful for the subtle effect is has on sleep…that is it allows a few hours in my case. 

Yes….I am one of those “unique” complicated cases…so I have a low dose. Any higher would have my internals, including my colostomy, in an uproar!

The same goes for the other med that I take at night…Amitriptyline. I am on a very low dose because this med shuts down (it does NOT slow down) my intestines. 

Amitriptyline has given me a cluster of hours…can be 4-5 of solid sleep. As noted, I cannot do more because my intestinal track is TOTALLY over sensitive!

This makes trying medications for the overwhelming symptoms of Polyarthralgia and Fibromyalgia very frustrating!

The media…or rather…the drug companies would prefer that everyone believe there is a simple pull that can fix our issues! NOT TRUE!!

Those of us suffering with various conditions and illnesses understand. What we deal with on a daily basis is tough….it is the toughest thing that we have to deal with…apart from being a Mother, a Father, a Spouse!

I wish the drug companies were not allowed to promote their products….pills do not solve problems! Medications can be a tool!

Yet…some of us are dealt a hand…..we are entrusted with a diagnosis that does not have an easy answer….

We can only join together….to build each other up….to educate those around us….and pray for a better understanding of our illness/disease.

Family 

Enjoying an awesome weekend at our new home with my parents.  So thankful to share our new area and our new home!

I want to have ALL of our family and friends to come and visit! The opportunity to share our home and to prepare food for our guests!

I love to cook! Yes…it wears me out….but it also allows me to relax and to feel that I am participating!

It has been a blessing to share our wonderful part of the world with my parents!  I am anxious to share with my siblings and friends!

Major Challenge

I am finding the transition from the main “bread winner” to no income a challenge!  My husband had been self employed….as a guide and fish taxidermist…..so my income was the mainstay….his was the supplemental…..

As with any owner-operated business….especially one as a guide……it had its ups and downs……so our budget was always dependent upon what I brought home…..since I had a traditional job….with steady income.

My health struggles led ultimately to my having to resign my position…..my husband was not able to find work locally…..where we lived was a huge negative to my health.  Anyone reading my blogs will know that I then experienced the sudden, unexpected, tragic death of my Baby Sis.

Thus the mind change….the delimma I now find myself!

We have moved as a family to another State….my husband has started work……our son is in school….we are in a new home…..I am at home workingwith an advocate to obtain SSDI.

It is SO strange!  It is hard to step back….to “release the reigns” per se!  My body is holding me prisoner now……I have to rest….to step back….to allow myself the time to recuperate….to have the opportunity to improve.

It is time to support my Hubby….as he wades through unfamiliar territory…..testing out a job that takes him outside of his comfort zone….something that allows him to stretch and grow.

I am thankful that he has this opportunity!  This new area allows him to be the “head of the house”…..it allows for a role reversal…….this is good!

Yet…..I am struggling with the ability to let myself rest….to do what is needed….to allow my body to rest….to recover….to…hopefully, regain strength!  

I am so thankful for my Hubby, Son, family and friends as we move forward……..into this new reality!

Beware Tomorrow!

Caught your attention?  Living with Fibromyalgia and Polyarthralgia……these two words take on a whole new meaning!

As those with Fibro know, if we overdo, it will catch up with us in a day or two…..sometimes the culmination of incidents will pile up and it will defer the “catch up” by several days.  As with the case of dealing with the death of a loved one (like dealing with my Baby Sis’ sudden and tragic death), or with moving (in my case quitting my job and the our move to another State), our symptoms will increase…..will “flare”……

Today…..everything has caught up to me!  Good thing I can just be home!  It takes SO much to just step outside with our dog (my ever present companion)!  

My legs do not want to work….my arms are so heavy!  I know that my hands and fingers will be cramped by the end of this!

Yet….I have the joy of knowing that I baked banana bread and some sandwich bread/rolls today!  (Yes!  All Low FODMAP friendly…..so my IBS will be happy at least! LOL)

I have done my best to slowly pace myself….to take naps…..to rest…..yet…..the culmination of everything we have been through these past months….must finally catch up!  And…I feel that is today!

So….I will rest more…….relax……go easy on myself!  Tomorrow will be a better day!

Reality of Fibro/IBS and Grief

After dealing with the last few weeks, the overwhelming numbness…..doing what needed to be done for my dear sis, Carrie……my body began giving way the day of the funeral and then again at the Memorial.

The following week found me in a deep, profound Fibro fog!  So hard to describe…..like mind absent from the body.  Going through the day….wondering “how did I get to work?”  By the Grace of God, I was able to process payroll.  Each day the exhaustion in my body became more and more overwhelming!  

By the end of the week, the knots were back in my tummy…..just completely overwhelmed!

The exhaustion I experienced was beyond what words can say! Such effort to keep eyes open…..sleep……sleep.  Naps and early bedtime!  The simplest of meals fixed for my family.

Now today…..the exhaustion has released its grip!  My joints are so painful…….each and every one…..there is a huge knot behind my left shoulder blade……a hot soaking bath helped to lessen its grip.

Today will be another slow and careful day……more rest……gentle stretches……I know I just have to wait…..to allow my  body to release the stress of grief……made all the more complicated by my conditions!

A Tribute

My dearest sister, Carrie, you are missed more than words can express! I know you are now in a better place…I know that you are looking down upon us….watching and praying!

Yet….I find it so hard! I want to speak to you…to share my frustrations of the day…to banter….to hear your voice!  That voice which I will only now hear when I close my eyes….never again to embrace you….to never again hear your voice with my own ears!

I always thought I would go first…Afterall, I am the oldest!  I should have gone first!  

I do not understand….

I am exhausted…brain-fried!  I have no energy left! I cannot express the emptiness…the black space that is poised on my shoulder…

God has his plan. I would never underestimate it. I know my Sis touched so many lives….many more than most.  I do take relief in knowing that she accomplished SO much in her short life!

Yet…I must admit…I am guilty of wanting another day….another week….another month…..another year!  

Selfishly I would will her to be here…with us…..

Yet….I know that she has brought us together! Those that she touched are now bound!  She has united us all…from various backgrounds….we share her…..SHE has united us. 

My arms ache….I want to hold my Sis…..to hold her close…..

I must wait!  I must push forward….press onward…..continue to support and strengthen those left behind….

IBS/Fibro and Grief

I am so glad my body had held up as well as it has during this very stressful time!

My baby Sis, Carrie, died suddenly….tragically. I arranged for the transport of her body from hospital to funeral home, and assisted with setting up the graveside and Memorial services. I just kept thinking that “she would do this for me”!

Of course it has been difficult to eat….appetite has been nonexistent…I eat a little as I know I need too. 

The funeral and Memorial were last weekend. 

Now this week, I can tell that my body is succumbing to the emotional exertion….each day I find myself more exhausted….my Fibromyalgia and Polyarthralgia flaring….that nasty “Fibro Fog” blending with the overwhelming grief…..

No focus! Not for lack of want or will! Just the fact that all energy has been expended for the utmost honor….that of taking care of my Sis!

Today my legs were so hard to move! Walking 20 steps felt like miles….muscles in my left leg were knotted….completely unforgiving….my back was spasming! My brain was operating in a heavy fog. 

Today my IBS finally flared too!  The knots in my gut!  Those nasty painful knots….the horrific pressure against my stoma!  Feeling like I would explode!

Also dealing with those nasty phantom pains!  Yes! The anus and rectum that no longer exist…..I can feel the pain as if it was still there!  How is this possible ?!?! The brain is amazing!  I just wish there was an “erase” button!

Now  to rest….time to allow my body to catch up with my exhausted brain! To just take in all the emotions, the effort exerted to make it these last few weeks!

Exhausted Yet Smiling!

I was so careful this past week!  I paid attention to pacing myself…..making sure that I took a nap….did gentle stretching…..took a few bathes….I used my handicap parking to shorten walks…..used either an electric cart or had my hubby push me in a wheelchair when we had to go shopping.

Almost two weeks with the additional medication!  It definitely has improved my sleep.  I don’t feel my body at night.  

It is now Saturday….and I have not felt this “good” in a very long time!  Does that mean that I am pain free?  Does it mean that I am walking without any problems? Of course not!  What I am “enjoying” today is a level that is tolerable.  My arms hurt and ache…..my legs are a little heavy.  I do not have the burning all over. 

I am very tired.  I have taken a couple naps and allowed myself to sleep in this morning.  I have just taken my time…..and allowed myself to relax today.

Tomorrow I hope to attend Mass……I would like to walk for about 5 minutes too!

I know these are high expectations!  LOL  At least I have today……a respite to enjoy!

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