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Archive for November, 2015

Twice the Grief

I read an interesting article regarding Fibromyalgia and Chronic Fatigue Syndrome….the fact that these are life changing conditions….these greatly misunderstood chronic pain conditions are “for life”…..

In simple terms….the person we were before the diagnoses no longer exists….these conditions permanently determine our actions….in my case I have had to quit my job, relocate my family to a different state….all in the hope that in the long run….my symptoms will settle down to allow a simple life that is interrupted with occasional flares.

My hopes are simple….to be able to do a short walk….to be able to drive to the store…these will take time (I am prepared for the long haul)…..

Yet along this path…I have also lost my Baby Sis (as many of you who follow my blogs know)……so I am not only dealing with the grief of having lost my Sis and best friend…..I am grieving the loss of me! The me that used to be able to run….to hike….to drive….to take care of others….to fish….to hunt (yes…I have not given this up….just much more difficult as a Handicapped Hunter who must stay in the rig)…

This knowledge has really hit home! It has helped me to better understand another level to the stresses that my body is dealing with….the additional weight that is facilitating the continuation of the severity of my symptoms.

I hope that this “new” knowledge will help me to be more patient with myself…to better understand how to slow my world down so that I can come out the other side with limitations and less debilitation.

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.

Still Learning

I am living proof that no matter how hard I try to pace myself to minimize the impact life has on my chronic conditions…..it seems that I cannot be careful enough!

Yes…I am still learning….still trying to find that proper balance!

For example….yesterday, I wanted to do something nice (yet simple) for our Thanksgiving dinner. I rested…fixed breakfast…..rested again. Went for a ride in our RAZR with my hubby to view the snow all around us. Made a crust for pumpkin pie….rested…..cut up potatoes and put them on to boil….rested….put carrots on to steam…..rested….then mashed the potatoes…..(THAT was where I made my mistake!!!!)

I mashed the potatoes by hand!!!!! Yes…it hurt all the while I did it…..I SHOULD have used my mixer!!!!

Today I am paying the price for NOT using tools in my kitchen for everything! I cannot do ANY of these things by hand anymore…..so today….my pain is deeper….the aches are everywhere…..my body is revolting and teaching me another lesson.

It is hard to type this….but feel pressed to share…..I know that we are all tempted to try to perform a task that we “used to be able to do”….it is hard to know that we cannot….

Do not be hard on yourself for doing it though! Just take it as a lesson learned….let your hubby and son take care of loading the dishwasher and doing dishes….sit under a warm blanket….relax….let your body recover…

And…know you are not alone in your struggle!

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.

A Fractured Root!

Yes! Went to the specialist today to find out that my molar (that had all ready been crowned and had a root canal) that has been bothering me since I ground my teeth hard and clamped down hard causing my tooth and jaw pain….followed by the swelling….is in reality a fractured root!

The dentist I saw last week had hoped that the specialist would review x-ray, perform exam and determine that he could re-do the root canal….but not so lucky!

So tomorrow I go in to have the tooth extracted…..

I am glad that this will finally be taken care of….yet I will be forced to make another decision! How to deal with the missing tooth?!?!?!

I asked the specialists some questions….and have been doing further research……will have more questions in the near future.

I am hesitant to have an implant….as I am usually the “1 – 3%” that have issues! After all……I have been in that “unique” category ALL my life…with some exceptions…..yes…in those cases….I am “completely unique”…with “no one else ever recorded” in my predicament…..

Looks like I am in for another twist! All the while my nervousness of this step is aggravating my Fibromyalgia/Polyarthralgia/Chronic Pain Disorder and IBS!

The Face of Chronic Illness

Conditions such as Chronic Pain Disorder, Fibromyalgia, Polyarthralgia, IBS and other associated conditions are invisible. These conditions hurt the one that is afflicted in unbelievable ways…..the physical pain….the inability to sleep….the lost time with friends and loved ones…

I know that I am not alone in living with this hidden condition….and as is so often the case….I have a number of “hidden” conditions.

I have seen the look of “can you believe that”….or “how disgusting” when I have used an electric cart at the grocery store. I have seen those same inquisitive eyes when I am being pushed in my wheelchair by my hubby or son.

There is no outward sign….there is nothing that anyone can see with their eyes that reflect the pain coursing through my body….that constant ever present pain. The often inability to move my legs well….my awkward “Zombie walk”…..the difficult time I have in using my hands and arms….

I have had the frustration of going to specialists that do not believe in Fibromyalgia and/or Polyarthralgia. I know that others in my shoes have dealt with as well….

I am thankful for my doctors that do understand that Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, etc. are real. These conditions are not made in our imagination!

Our life with a chronic condition is like a two edged sword….on the one hand are the symptoms we live with each and every day….on the other is the way that we are “seen” by others.

How we view ourselves….the “faces” we put on for the outside world further hide our true conditions. We smile and put our best foot (LOL) forward! We do not truthfully answer “how are you today?” (I mean….who would really want to listen??? It is more than words can express!!)

Loved ones and friends can sometimes think of us as “fickle” since we cannot give a definitive Yes to an invitation….our usually answer will be “I will let you know….closer to the time”…..

The truth is we do not know how we are going to feel from day to day. No day is the same. Life is a nasty roller coaster of pain going from out of control to “manageable”…..(let me tell you though….manageable is still beyond what a “normal” person would want to deal with….even for a brief amount of time”….

Some things in life will take precedence, like the sudden death of my Sister. My conditions took a back seat….it did not matter that I could barely move….that my wheelchair was my best friend! I was present for everything….just as anyone in that position would be.

The recovery time for us is so much longer! This I am just beginning to finally grasp…it has been over 6 months since I lost my Sis…..and I feel that my body is just now settling enough to let me work through my grief….to allow me to work on some projects (like a photo album)….

I am so thankful for the strong support group that I have (my hubby, son, family and close friends)……my hope for each of us making our way through this maze of pain is to have the emotional support that we need.

Fatigue

A constant companion of chronic pain is fatigue.  It is overwhelming at times and seems to have no true relation to activity.

A perfect example is riding in a car……just that act will cause fatigue….even if it is just an enjoyable hour drive with family.  A nap is needed once home….if not…the next day will surely bring an early bedtime….as the body just decides to “unplug”!

Thankfully my husband and son are supportive!  In the beginning, I would often get the question “what made you so tired”?  Now…they understand that it accumulates (for lack of better term).

It is like walking through mud in your boots…..the more you step…the more mud that accumulates on the bottom of your boots….until you find that your steps are impaired by the weight of the mud and muck.

The fatigue that accompanies chronic pain conditions (Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, etc.) attempts to do the same!  It attempts to wear a person down….to prevent us from doing what we want to do.

The trick?  Well….there is none!  We simply have to embrace this part of our condition/illness…..just like the pain…..it is yet another companion.  All we can do is pay attention to our activities…..pace ourselves as carefully as we can…knowing that even when we are doing our best…..we can still overdo.

I try to remember that it is important I take my daily nap…..that I keep a consistent bedtime routine (try to go to bed and wake up at the same time each day)……while allowing myself to break that rule if I am too overwhelmed with fatigue…in which case….I give myself permission to crawl back into bed for a longer nap….and allow myself to go to bed early.

I know these companions are frustrating.  The true “trick” is to NOT allow these companions to rule….or to be in charge!

Hang in there!  Be patient with yourself and know you are not alone!!!

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