Embracing life with chronic pain and illnesses.

Posts tagged ‘catholic families’

A Son’s Disbelief

Our 11-year-old son gives me hugs which I love of course! However, last night while sitting in the office with him as he was doing his homework he said something that completely took me aback.

Since I cannot sit very long, I usually spend some time lying on my back on the floor….or fidget around….shifting my arms and legs. I must have made a slight sound as my son turned to me and asked if I was okay. I said I was fine. He promptly responded, “No you are not!”

I reassured him that even though I was not feeling very good, that there would come a day that my pain level would be better….that I would have better days. To this? His response was “Will that REALLY happen, Mom?”

I again told him that it would. That it might be one, two or more years down the road…but that day would come.

He still did not seem to completely believe but was satisfied with my answer. After another huge hug, he returned to his homework.

This is the “kick in the gut” that I as a parent with a combination of chronic conditions must “deal” with. I know that I am not alone. Each of us had had this moment with our kid(s)!

It is the added responsibility…the extra push that forces us to feign a smile…no matter how we are feeling! Even when our kid(s) can see through the charade!

No Escape

There is no escape from the pain this morning….no position that offers any type of relief…the stabbing pains coursing through the legs….hands and fingers aching so much in each joint making it almost impossible to type this.

I just have to try to express the feelings of today….crying is of no use…no help to anyone…I have no true answers for today….I can only think this still my body reacting to having taken a road trip and being away from home for the Holiday.

Plus the stress of going through the first Holiday season without my Baby Sis…I am sure there is a part of my brain that is focused on that aching part of my heart…it is just the pain that is drowning out all sense…all thought.

I can barely follow a thought….cannot remember from one room to the next. The headache has all ready stated.  The Fibro Fog is thick this morning….a welcome veil…as it helps to numb my senses….

It is so hard to “walk” to the restroom….my legs are heavy…yet it is like they are not connected….my brain says to move…yet…I can barely manage a shuffle….

My arms are throbbing and burning…making my hands shake….making it even more difficult to express myself….

Yet…I am driven to write…to get this “off my chest”….to say these low days….even though they seem to drag us down further than we could even imagine…are going to end…..

One morning I will awake to find that my joints are not throbbing….not stabbing….not aching…..that I will finally be free of at least this one symptom!

That is my focus….as I force gentle movement and stretches….shifting under my heated blanket…distracting my overwhelmed senses as best I can…

Struggling with a Hidden Illness

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I sit here searching for the words to describe what it is like living with a “hidden illness”.  For those with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/etc., you know how frustrating it is to look healthy on the outside….when your insides are screaming, your muscles are revolting, your body spasms, the throbbing intense pains, the knives being pierced randomly throughout your limbs….

This picture from this morning brought inspiration!  No one questions that the moon exists….we see it even out of place….as this morning…its bright reflection in the early morning light….

The moon is usually “hidden” during the day….yet we do not give it a second thought!  We know that it is there….that we expect to see some phase during the nighttime hours.  We delight in the brilliant brightness of a full moon!  We oooh and aaaah when we are allowed to view a lunar eclipse!

Our “hidden” illness/conditions are just like that moon that is normally unseen during the day.  No thought is given to the normal day to day….except on those mornings when it is “out of place”….in the morning sky.

I do not look like someone that is “out of place”…..just as most of us with these conditions…..yet….if you paused for a moment you would might notice:

My husband or son pushing me in a wheelchair;

My awkward leg movements as I lean heavily on the arm gently guiding me to a chair;

The strange flexing and twisting of the wrists and fingers (as if this will relieve the pain);

The fact that I continue to move or shift my feet, legs, head….with only short pauses;

The distant look in my eyes (if you look quick enough!) as I allow my mind to take a momentary break from the pain that is wracking my body;

My slurred speech…..mispronounced words…..incorrect words that bring laughter to our son;

Fidgeting while either attempting to stand or while sitting;

Fumbling awkwardly to try to get my wallet out of my purse…..followed by the enormous amount of time it takes to get payment out of my purse to the cashier.

All of these are outward signs…..these are the “glimpses” into my….into our world!

My body may be on fire….the stabbing pains intensely attacking my arms and legs….ice picks being run through my hands and fingers…..the spasms in my back and legs…..the shards of glass slicing into my feet…..the bugs crawling under my skin…..the choking and sickening pain of the weight of my clothes……

You will not see these things….instead you will see me smile….you will see me interacting with my husband and son….

I do not allow the overwhelming struggle that is within to rear its head when in public…..I allow the heavy sighs and the closed eyes only when alone….

For all the effort and energy to just make it through the day….is more than words can describe…..it is like holding an enormous weight overhead….not being allowed to take a break or rest…..

Yet…even in rest there is no peace….the symptoms continue….day and night…..it is just at night….our dreams can sometimes take us away for a short time!

Fibro “Flare”

Living with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder has been the hardest adjustment of all my medical challenges!

There is no surgery…no pill…no supplement…no diet…no magic cure for these conditions!

There is so little research…so little know about Fibro!  The best thing I have found are the web resources….the sites and blogs of those dealing with Fibro and its assorted “siblings”!

It is a comfort knowing that I am not alone…it is sad that it takes SO long for us to be firmly diagnosed….and even then…we are usually dealing with so many other issues in addition to Fibro….each of which feed off the other.

I am not well enough to work….not well enough to be the smallest fraction of the person I was years ago before this mess!  I know that I have a long road…several years before I will have symptoms dialed down enough to know what my “new” normal will be!

“Exercise” is walking from my recliner or couch to the restroom at the back of the house….on the very best of days I might venture downstairs (once)!  I have NO muscle tone left….I used to be able to run 5 – 7 miles a day!

Night and day is not even a good description of the life change I have experienced….yet…it is not only me!  My husband and son have witnessed this transformation first hand!  My family and friends have seen the change….

I do my best to project a positive image….smile when I am hurting so badly….only those with chronic conditions/illnesses or those closest to me can catch the slight grimace or the facade!

I am NOT going to give in to these conditions….I have challenged head on my many other conditions….I am thankful for my Colostomy….I am handling my IBS with diet….

Sleep continues to be a challenge…..thankful though for my Primary Doc who has helped me come up with a sleep aid!  Children’s Benadryl (or in my case a knock-off brand since I must have dye free)!

I am thankful for the move my husband and son were willing to make to give me a chance to improve! After having visited Oregon again, I am thankful that Idaho has helped with the joint pain and incredible burning! (Now I only experience them under extreme stress or when we visit Oregon!)

There are days that are MUCH more challenging then others….yet…I am learning to just allow my self to recline…to rest….to be relieved of all duties….to recognize the overwhelming pain and sensations and not fight!  To allow myself to just stop….to rest….to distract myself from the pain…the burning….the overwhelming sensations by blogging….reading…or watching something on TV…..

Life’s Hardships

Those of us with chronic illness/conditions have had a unique opportunity to really learn about life’s hardships….

We must deal with additional “side effects”….the ramifications that our illness/conditions play upon our bodies when we endure the stress of losing our loved ones….or dealing with major changes in our lives.

As I have posted, I broke EVERY rule! After the death of my Baby Sis, I quit my job…relocated my family…..to pursue the chance to reduce stress and to obtain the medical care that I needed….as well as provide a better opportunity for our Son….

I want him to have the best opportunity for an education….and to be able to have the chance to dig fossils….to dig rocks…..to explore….to hunt…to fish…..to have other kids around….

To date….we have been able to meet the hopes for our Son!

I am thankful for the medical care that I have found here…..I know that I have exasperated some of the specialists in our local area….

I will continue to pursue help from the University that is within a two hour drive….thankful that I have a husband that can get me there!

Seeing how well our Son is flourishing in his new school reaffirms our decision! After all….he is 11-years-old! Yes….he is in 7th Grade (a year ahead of his age)….and getting straight A’s!!!

Like our Son has said….this new school is SO positive! The teachers want every student to succeed! Yet….the teachers are able to challenge each student….to push them to be the best they can be!

I love the fact that our Son enjoys school….that he loves learning….that he wants to do his best for his Aunt!

I know…I am rambling….part due to the fact that it is hard for me to keep a straight thought with any distraction! Yet….I know that I am making sense to those like me….

Those that are struggling….that are doing the best THEY can do….to take care of themselves….and to take care of…or at least…help…those….around them!

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!?!?!

Tooth Extraction — A Success!!

I survived the tooth extraction! LOL I was so nervous about it! It is crazy how nervous I get when it comes to going to the dentist! The fractured root actually made the extraction quite easy and fast…..the longest part was the dentist cleaning out the remaining infected gum…he also drained the “boil” (swelling along the outside of my jaw)….

My wonderful hubby filled my prescription for pain meds……and picked up yogurt and eggs so that I can enjoy soft foods for the next couple of days…..

I normally do not take pain meds….but I have learned to listen to doctor’s orders…and I will take the pain meds for the initial time period once home….

It is crazy how pain from a tooth can inflict SO much discomfort when I am all ready SO accustomed to so much pain on a daily basis.

Well….the injections are starting to wear off….and I am feeling my jaw! Sore and achy!!! LOL

Now time to sign off….to relax…use the ice packs throughout the rest of the day to help with the anticipated swelling and bruising.

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