Embracing life with chronic pain and illnesses.

Posts tagged ‘family illness’

Backwards

Chronic conditions take such a toll…stretching us to our breaking point…like a tennis ball on an elastic cord…we are tossed about without rhyme or reason.

We are bombarded by new or worsening symptoms…as we start a medication, deal with interactions between medications, struggle with adjustments to our prescription(s).

Add new diagnoses that further complicate our all ready complex situations…we truly push our medical teams…as they are thrust into the unknown.

The inevitable “Flares” that strike…some we know are coming due to choices we make (like going out to lunch with a friend…attending Parent Night to meet our son’s teachers…a simple short ride in the rig)…others strike for no apparent reason…forcing us to cancel plans…to retreat to the safety of our homes.

It is no wonder that we often feel that we are going backwards…despite our best efforts.

Yet I caught a glimpse of something precious when I paused with my eyes closed…in that short time, I took time to review the past few weeks…months…and saw progress!

I am speaking of those little changes…sitting through a rented movie –actually being able to focus and watch it…no recent falls…sleeping in a four hour block at night.

Take heart! Even when we feel like we are going backwards rather than forwards, we are progressing.

Ringing

Ears are ringing

No escape found…

High pitched squealing

To lower buzzing…

Most days

The constant hum…

When storms approach

The sounds overwhelm…

Turn on music or TV

Something to compete…

The waves of nausea

Inevitably come…

Just as waves

Crashing against the shore…

No quiet found

Even with hands over ears…

With wishful heart

The body yearns for the storm’s passing…

Day to Day Battle

The reality of living with a chronic condition like Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/etc. is difficult to explain to someone on the “outside”….someone who is not dealing with our day to day battle.

The past couple of days (including today), I have been dealing with the overwhelming fatigue that attacks for no reason! The kind that makes it virtually impossible to keep your eyes open. Going to bed early…taking a 3-4 hour nap….then able to go to sleep early….to sleep in and do it all over again!  Taking SO much effort to just open eyes and get out of bed.

My body has been so achy….so heavy….so tired! Thankful for the pain medicine that has been added to my arsenal…imagine how bad I would be feeling without it!

My body has been running the gamete of symptoms though…..the aching, stabbing, throbbing, cramping, extreme weakness, severe Fibro Fog, numbness and tingling, insomnia coupled with the inability to wake up (what kind of a twist is that!)…feet aching and stabbing so bad it is hard to put weight on them!  Even elevated there is no relief.

Our conditions are made worse by the fact that most of us appear “completely normal” on the outside! Would be so helpful if there was a way to truly measure our illnesses/conditions so they could be seen by our health care providers, our families and friends!

I know that I force myself out of bed each day….force myself to get dressed…even if I can do nothing more than to lie on the couch or recline in my chair….just getting dressed helps me to feel that I have accomplished something. It gives confidence!

That bit of confidence helps on days like today….when I feel that I am losing the battle! After all….tomorrow will be another day…

Bent But Not Broken

10063326-native-tree-twisted-by-the-force-of-wind-sabinar-el-hierro

Just as a tree

Ravaged by wind and storm

So is pain to our bodies…

Pain ravages all

Mind, body, soul

Wreaking havoc on relationships…

Outer appearances

So grossly misleading

For this would truly be the view…

The world sees

One standing

Tall and majestic…

Yet the truth

Is like the image above

Twisted and bent from our battle…

Even so

We persevere

We live, laugh and love…

We choose

To “stand tall”

Even when we cannot leave our bed…

Our spirit

Strengthened by Faith

Family and friends…

Continuing to push

To share with others

Hope for a better tomorrow…

Wave After Wave

Those of us dealing with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS and the like dread the idea of catching a cold, getting an infection, etc.

This month has been a difficult one! The first of May was stressful as it was the first anniversary of my sister’s death….the stress combined with my conditions helped me to get the nasty head cold that my hubby had….(Even with best attempts….cleaners, hand washing, etc. to prevent.)

The nasty head cold led to a urinary tract infection….which then led to another bacterial infection….PLUS all my symptoms are back (body has completely “awakened” from the Ketamine Infusion)…

Needless to say….I am on yet another…different round of antibiotics to treat the current bacterial infection….to be followed by another treatment that my doctor hopes will get me over the last of this mess!

I know I sound crazy!  I am SO looking forward to just dealing with my “normal” full blown symptoms of Fibro!!!

A “Fringe” Treatment in the Works

I had my follow up appointment with the pain specialist yesterday.  In preparation for this appointment, my husband and I did our research on some of the “fringe” or “optional” treatments for Fibromyalgia/Polyarthralgia/Chronic Pain Disorder since I cannot tolerate any of the traditional treatments.

The initial part of the appointment was the pain specialist listening to my concerns….listening to my husband’s comments/concerns….then earnest discussion began about the next best option to try.

I again…was SO impressed by the fact that this Doctor was intently listening….that he really had been giving serious thought to my case….all which was clearly evident during the appointment.

We determined that the best next course of action for me is to try Ketamine Infusion Therapy.  His office is currently reviewing with my insurance and working on scheduling the appointment.  I should hear from them by the end of the week.

The other point that impressed me was that he too thought that I should be able to see the Functional Medicine Specialist sooner than mid-July.  He and his office are going to follow up on that as well…to see if they can help to influence an earlier appointment.  I so appreciate their attempts to assist on that front as well!

So I find myself again….slightly….excited…..knowing that there is something soon…that we will try!  It will be interesting to see how my body responds to this infusion therapy!

Failure

Failure…..Webster defines it as “1. an act or instance of failing or proving unsuccessful; lack of success. 2. non performance of something due, required, or expected. 3. a subnormal quantity or quality; an insufficiency. 4. deterioration or decay, especially of vigor, strength, etc….”

Each of us deals with failure or feeling like we have failed at some point in our lives.  It could have been the first time we tried to ride a bike….only to find oneself falling over time after time…unable to stay up.  It could have been one’s attempt to learn how to hit a baseball….swing to miss….swing to miss…

These memories or times in our lives proved one thing to us.  If we continued to practice….continued to pick ourselves up….eventually we were able to master (or somewhat master) a new skill.

Now taking this a step further……I find myself in a very difficult situation….I am living with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/Pelvic Floor Syndrome/Spastic Colon/Colostomy and ALL their related symptoms.  Because of all my underlying internal issues, I cannot take medications that would help “jump start” a recovery path for my Fibromyalgia/Polyarthralgia/Chronic Pain Disorder.

I have left specialist after specialist….doctor after doctor….and ultimately a medical university team scratching their heads……..nothing at all that could be offered to me…..only looks of compassion.

Time and practiced patience….commitment to being as positive as possible…..daily attempts to maximize rest….gently stretch and to attempt movements…all while enduring all symptoms that my conditions can throw at me.

Amidst all of this, there are times that I struggle with an overwhelming sense of failure…..the sense of letting those dearest to me down.  After all, I can no longer work, so I have added an extra layer of financial stress to my husband.  Our son has never experienced a “healthy” Mom, so he has had to bear more responsibility than a child should.  There is not an aspect of my life…our our lives that my conditions do not impact!  This is true for ALL of us battling chronic illness.

These feelings of failure ARE fleeting….even though they seem overwhelming while we are in the midst of this emotional meltdown!  We may not share or show these feelings….I know that I do my best to conceal them….I do not want to worry my husband and son any more than they are all ready.  I choose to express through words….to release any negativity by sharing with others that are dealing with the exact same roller coaster.

We are not where we would have planned to be….we are not living life like we had dreamed….yet…I know…we have NOT given up!  We are still dreaming and planning for that day…..the day when our conditions are under some semblance of “control”.

Each of us is traveling our own “pain path” that will be wrought with twists and turns….ups and downs…..slips and falls…..there will be times of frustration….of failure….of despair….and even times depression.

Remember to use the tools at your disposal….watch a funny movie or your favorite movie….paint or write…..sit outside in the sun…..take a nap……allow yourself some form of distraction….of relief….and do not torture yourself over those feelings!  In doing so you will return to yourself…..your feeling of “failure” will lose its grip….you will once again be invigorated to continue with your efforts to contain your pain and many associated symptoms.

The Body As Prison

There is no end to the overwhelming pain

Coursing through the body….

Every cell seems to be revolting

There is no sense to the chaos within.

Medicine has no answers

No true understanding as to why

No knowledge of the cause

Many that still do not believe in our Hidden Illness.

Outward appearances defy our reality

Our bodies hide the truth

Inside we feel the sharp stabs of the dagger

The ice picks that pierce

The incessant fire that burns

The throbbing head

The overwhelming fatigue

The loss of words…..of being able express oneself

The loss of independence

Having to watch your child(ren) through the window

Struggling to prepare a simple meal

Hands and fingers crippled with pain

The slow methodic walk down the hallway

Each wall has become a walking aid

Creepy crawlies under the skin

Living in a daze….like a thick veil covering our eyes

The sense of loss

The grief of losing yesterday

Today and tomorrow forever changed

Each day presents itself differently

Never knowing the type or intensity of the onslaught…

This is my reality

My body has become my prison.

 

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”….

Take Time

“Take Time”…..a thought….so very important to those of us with chronic illness/conditions…..a concept that others do not truly understand….

Those of us living with chronic illness/conditions….are used to “doing”….we take care of those around us….our “past” selves…pushed and did the job of 4-5 people…..we did not understand the idea of “slowing down”…or “taking time” for ourselves….

It was a thought that bothered us….it meant some form of weakness…it would be like we were saying we were weak….

I might be speaking only for myself….am I???

I refuse to believe that I am alone…that I am the only one that has been forced to re-evaluate….to refocus myself….to embrace my new “normal”!!

The hardest step is just as the title says….to “take time”! This meant to step back…to understand that it IS important for us to give time for ourselves…that it is NOT being selfish…that in taking care of ourselves….we are allowing ourselves to participate in life with those around us!

This may not make sense to someone on the “outside”….someone who is not dealing with the complete “take-over” of one’s body by an outside force…..

Just remember….those of us with chronic illness/conditions did not ask for this…..we did nothing to deserve this…..

It has just been dealt to us! So it is up to us to make the most of it! To be as positive as we can be….and to make the huge sacrifice! To learn how to “take time” for ourselves!!!!

This can mean allowing our spouse to do the dishes….giving ourself permission to get that haircut/color we have been dreaming of…..maybe buying more comfortable clothes……or just taking a nap and not feeling guilty!

Please….”take time” to find out what is best for you! What will allow you…to “take time” that will ultimately give you the feeling of empowerment!?!?!

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