Embracing life with chronic pain and illnesses.

Archive for April, 2015

On The Verge of Tears

I know we have all been at this point. Battling daily with chronic conditions/illnesses takes a toll!  It pushes us mentally, physically….and spiritually. 

Monday started ok…..then I had symptoms starting to increase.  Then at 6 pm, I was hit by what I can only describe as a “loaded freight train”. My entire body….every joint, every muscle was aching…throbbing….that deep intense aching that makes you extremely neaseous. My body was on fire! I was so totally overwhelmed….so suddenly…..it completely caught me off guard!

The cause of this intense increase or increased flare of my Fibromyalgia and Polyarthralgia?  The weather!  Another front moves in!

I could feel the tears well up…..no actual tears fell…..I knew that there was nothing I could do…..just curl up and pray….rest as best I could. 

We each hit these points….these times when we are completely overwhelmed….feel that our bodies are completely out of control….that the hope of relief is so far off….

That feeling of being on the verge of tears! 

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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!

Baby Steps

For those of us that are dealing with chronic illnesses and conditions, it is easy to “lose heart”….to become frustrated……to yearn for the life we had before our every movement……every moment…..was dictated.  It is SO important to stop and remember the small things!

Last week’s doctor appointment helped me to finally understand this!  She helped me to see that any movement is excercise!  Simple stretching is excercise!  Walking down the hall is exercise!  She further emphasized this for me by saying “set a timer…..for every 30 minutes of activity of any kind….rest for 10 minutes”.  Wow!

Now I realize why I am so exhausted after going to the grocery store!  I was too stubburn to use the electric cart or sit in a wheelchair and have my hubby or son push me around.  After this conversation, I saw these tools….the electric carts and wheelchairs as a wonderful gift!  These are tools to take advantage of that provide me the ability to enjoy a trip to the grocery store while allowing my family to assist me!  They also give me the ability to conserve energy to participate in the most important parts of my day….like playing a game of chess with our son….or playing a game of Yahtzee with my hubby and son….or one of the other many games we enjoy together as a family!

Another major point my doctor made was the importance of taking….rather….making time for me.  Something that I am NOT very good at!  LOL  (I am sure everyone can relate to that!)  She was able to make this point by simply asking…..”Why aren’t you taking a bath every day?  Why do you only take one on the weekend?”  I had no response…..I simply fell guilty for taking time for me.

So…I am enjoying my daily naps!  I am not taking daily baths yet!  However, I am making sure that I am maximizing my relaxation……reading…..word searches…….hot showers……and yes, I am going to make time for a few baths throughout the week.

I am also focusing on how I can best take advantage of any “trip”……from the couch to the restroom?  Be sure to top off my cup of water in the kitchen……..

Be conscience of every movement and motion you make during the day!  Give yourself credit for each step….for each arm motion…..each stretch!  Soon you will realize just how much you are actually accomplishing in a day!

You will suprise yourself with all that you are managing!

New Meds

I have a new med added to my regimine….

Yes…this means dealing with the side-effects of an additional medication.  

Today…I could tell that my new med was affecting me.  I felt the light-headedness…..it almost like an out of body experience….yet, it feel short!  LOL  

Light-headed…yes.  My body is adjusting to the meds….to an addition of Amitriptryline.

I can tell that my body is adjusting to this new medication.  It also targets the brain…..the same receptors in the brain that are targeted with pain.

I had hoped that I would never have to deal with this….however, I have to admit that I will be taking medication every day……that is….every day….of my life…..from today into the future! 

This is not the life I had planned…..not a life that anyone would plan for themselves…..afterall, who would want to take pills every day to keep their body’s happy/healthy!

We struggle….when combatting serious, chronic illness/conditions………we push…we flail…..we embrace and hope that there will be some answer!  

Our “inner being” understands that we are struggling and doing our best to protect ourselves.  

We step forward and fight what comes against us…….our inner “child” steps up to help….to guide and to direct……it is then up to us to step up…..to take ownership….to be the one to say “here we are”…..

My “Ah-Ha” Moment

My guess is that everyone who is battling a chronic illness has had the moment of time that has provided an “Ah-Ha” moment….

By this I will say, that I had my true “Ah-Ha” Moment when I attended my doctor’s appointment this week with my husband.  It was a great doctor appointment.  The discussion was very good!  My husband was able to point out things…to ask questions…that further probed my doctor to direct other questions to me……which put a completely different light onto things!

I realized that I truly had not accepted my new condition…..that I had been resistant to the fact that my life from here on out would be different….that I no longer had ANY control.  In having this realization, I gained power.

My eyes were opened to the fact that my primary medication (Cymbalta) was helping a bit.  However, I was still pushing myself too hard!  And, that in pushing myself I was aggravating my condition even more!

I finally understood that walking the aisles of the grocery store is equal to a marathon!  That walking down the hall from the bedroom to the living room is like running a mile!  That drying my hair with the hair dryer is like lifting weights for an hour!

Yes!  Those of us suffering….enduring……living with….Fibromyalgia and it’s sister Polyarthralgia are forced to embrace a “new reality”!  

I walked away from my doctor appointment with a better understanding……realizing that it was time that I fully accept my condition….that I now have a different “way” to live.  My tomorrow has nothing to do with yesterday.  In the past, I might have pushed forward through pain to achieve a goal.  Now…..all the rules have changed.  

I now embrace the opportunity to be pushed in a wheel chair to conserve my energy…….I embrace the chance to be in one of the electric chairs……I park as close as I can thankfully to my handicap permit!

My doctor said to set a timer…..for every 30 minutes of activity there should be 10 minutes of rest.  Now….think of this!  How would you handle a given day in which you would have to stop every 30 minutes to have 10 minutes of down time?

Yes…pause….think about that.  That is what hit me!  I realized that I had to look at every activity as if it was excercise.  Any time I move, I am exercising! 

No wonder my body is revolting!  I have known nothing but “push…push…push”……. I have always given more than required……yes…this has further placed me in this position!

I am now in a position in which I cannot “push”….I cannot “make myself go beyond”…..my body has set a limit……it has SET a limit!

Fibromyalgia and Polyarthralgia are conditions that completely “take over” the body!  Every muscle, joint, tendon feels the pain!  The heavy weight…..the pain….the burning sensations…..are completely…..TOTALLY overwhelming!

This IS MY world!  This IS MY reality!

Struggling

My body is tormenting me!  It is showing that it has the upper hand.  My wrists, fingers, hips, feet, toes…..any movement of the joints is excrutiating.  My arms, back and chest are burning.  My arms and legs are aching…..stiff…..so hard to move with the muscle spasms!

Walk from the bathroom to the couch…..exhaustion!  Today, I had to go to the post office…..then after work to the store!  Thankfully I am enjoying the comforts of the couch with my heated blanket!  I am completely worn out and exhausted!  The week has been a very long one…..so ready to have a relaxing….at my pace weekend!

I feel trapped!  Yet, I will not be owned by these conditions!  I hurt….all over….feel completely miserable.  Yet….happy to be home.  I am anxious for my next doctor appointment.  Ready for the next step…..

I know this is a long path…..it will not be easy…..the effort to get through each day….the pain/sensations are so different from anything I have experienced before.  It is hard to explain.

I will not give in to discouragement…..I will not allow myself to get frustrated and depressed.  It IS a constant battle at this point though!  It is so hard….in the back of my mind I hear the questions….”Will you be able to hunt with your family?  Will you be able to continue to work?…….” 

Too many questions……my head can start spinning!  I cannot predict where I will be in the next 3 – 6 months.  I do not know how my body will ultimately respond to the different medicinal therapies that we will try…..

I can only focus on my family….on the loved ones around me……on the obligations that I have such as work….to distract….from my body!

Why? ¬†We DO All Ask Ourselves This!

This is one of those days that I must shout……must express the torrent of thoughts racing through my mind!

I must be honest.  I am struggling right now!  I do my best to project a positive, happy front; however, it is getting harder.  All the challenges that have been sent to me…….now this combination is really wearing on me mentally.  When I have been at this point in the past, there was a surgical option!  Now with Fibromyalgia and Polyarthralgia, that is not the case.

Again…..I am with the many others that are trapped in this “unknown”.  The degrees to which each of us is afflicted varies.  As with my other conditions…….it appears, that I am again a magnet for another very, nasty battle!

Yes….I pray….every day.  I have even asked God to take this away! LOL  However, I know that like everything else…there is a reason.  We are taught from early on in Sunday School, that God will not test us beyond what we can bear.  We are also taught that what does not defeat us makes us stronger.

It then only makes sense that those of us struggling with these chronic illnesses…..these chronic conditions…..should consider ourselves “super” strong!  Yet….I know that I would be the first to say…..I am anything BUT strong.

The chronic conditions coursing through my body control my every action…..control and dictate whether I can even have the energy to play a simple board game with our son…..or stay alert enough to watch a movie at home with my guys!

Maybe I am looking at this all wrong……maybe we are not meant to understand why we are chosen to receive these challenges.  Maybe it is just to provide us as examples to others…..examples to show the importance to pray…..to demonstrate asking others for help…..to show humility by relying more heavily upon others who might not otherwise step forward….

Dealing with the pain…..the aching….the muscle spasms…..the burning….the extreme sensistivity to all that touches my skin……the overwhelming sensations and headaches……these are leading me to almost feeling like I am losing my mind!

I know all this is real….even if I appear “just fine” when I look in the mirror.  I look forward to seeing my doctor on Tuesday…..to revisit my options.  Time to see if there is a different combination of medications that I can try.  

And…yes….I will keep putting one step in front of another….I know that “this too shall pass”…..I will awake in the future to find that my symptoms are better under control.  However….until then……I struggle……

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