The most difficult thing we learn with chronic illness/conditions is to listen to our body. It does not happen overnight…it takes time…and going through the cycles…then one day you awake to find yourself recognizing the pattern.
I have finally recognized not just one…but several patterns. The most challenging to me emotionally is the following pattern: long lasting flare (3-4 weeks); severe bladder infection; extreme fatigue; head cold; extreme fatigue; back to my “normal” — resulting in a cycle that can last a couple of months. Another pattern: flare (1-2 days); extreme fatigue; back to my “normal” — a cycle that will last 1 to 1 1/2 weeks.
Being able to recognize what is happening and what will possibly (or probably) happen next, can allow us to shorten the cycle. No, not always, but it does some times. At the very least, it can calm our minds and lessen our feeling of guilt as we give ourselves permission to rest…take a nap…ask our spouse to bring home pizza…allow a friend to bring over a meal.
It is also important to verbalize what is going on to our immediate family members. I have found this helps our son a great deal! He is reassured and very supportive when I open up…let him understand what is going on and that it is temporary.
Don’t get me wrong, it is still frustrating…we can still wrestle with guilt…as we lay low…allowing our body to rest…using whatever treatments work for us (hot baths, hot tub, sauna, heating pad, etc.).
Take your time…listen to your body…and, most importantly, be patient with yourself!
The soft white flecks
Growing in size
Cascading and dancing
Their way to the ground…
Glistening in the sun
Reflecting such brightness
In silence covers
All as a blanket…
The dancing snowflakes
Caught by the breeze
To and fro
Up and down…
Their brothers and sisters
As a soft blanket of white…
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!
Receiving the diagnosis of Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/and-or any other chronic condition is a huge life changing event. It comes with a wash of initial emotions and questions.
If you are like me, the time leading up to the diagnosis as well as the time that has elapsed since the initial diagnosis have been filled with more tests….more doctors….more specialists….along with more research on your part.
We wear out our keyboards and few working brain cells….to view forums, blogs, medical research sites, etc….all in an attempt to connect with others….which also helps to reinforce the fact that we are not alone!
There are days that we are “in control” of our emotions….by this I mean…that we understand that we have a permanent condition. For some, its impact is minor/moderate….for others (like me) its impact is extreme….robbing us of all things that we enjoyed and took for granted!
We focus on putting our best “foot” forward….enjoying those few things we can do….like being able to walk to the restroom with a walker….step outside to sit on the porch and enjoy some fresh air….we remember that the milk goes in the frig…or to simply recline and have no muscle spasms.
It is inevitable though…..to have those times when we feel frustrated….overwhelmed…wish that things were like they were before….
Some are able to find relief with medicine…..some with supplements…..some with alternative treatments…..others, like me…..may het be searching for something that will work! Something that will at least dial down the daily pain/symptoms.
Don’t get me wrong….I am so thankful that my body will tolerate Cymbalta! (So far the only med……) I am also thankful for the pain specialist that I have seen that stated that simple gentle stretching is the best form of exercise for me right now…this provided a good daily goal for me….something that is usually attainable!
However…knowing that there is really nothing traditional medicine can help….realizing that many of the alternative options are also out….and waiting for another 4 months until the next specialist (Functional Medicine)….and then the additional wait time for all of the tests to come back…..adds another layer of stress!
I am glad there is another option to explore…..yet…there are days that I just wish something would happen….like…maybe I would awake to find that I was just having a bad dream!
This is the BEST way to describe how my Fibromyalgia and Polyarthralgia having me feeling…..
It was really brought home when out hunting with my hubby and son late yesterday afternoon. I have a handicap permit so we drive…pull to the side of the dirt road and glass….then proceed. Yesterday we came to a great spot where the road ended to just step outside of the rig to glass some ridges.
My hubby asked if I thought I could walk about 15 feet from the truck so I could have a better view of one of the ridges….and he and our son went a little ways further to watch a different ridge.
Needless to say….the walk was very slow to get there…then I could only stand for a few minutes…..had to kneel down…..the effort of holding my binoculars was difficult…..I just wanted to be able to glass….to watch the ridge line….
I had to give up within only about 5 – 10 minutes! My hubby had to help me back to the truck….then I was able to lean on the truck to rest…..attempted to glass a while more…..
So frustrating to deal with HUGE slap of reality! I am only a shell of my former self! I used to be able to hike…at least a short ways! Even with the chronic pain conditions I was dealing with. Fact is…Fibromyalgia and Polyarthralgia ARE SO radically different!!!
My conditions are still out of control. I am awaiting the appointment with my Rheumatologist to go over all the tests and imaging reports. I am anxious to see if there are other conditions that are helping to confuse the situation!
My chest and arms are burning….arms, legs, hips, hands, feet, hips and back are hurting/aching SO deeply! It IS overwhelming…..and the memory issues have not improved at all either…..
Struggling through each day….as so many of you know….is BEYOND exhausting…..it takes everything I have to make it through the day….to attempt to participate….
There is NO easy fix….there is NO magic pill….it IS a long…hard road…..I just keep my eyes fixed on that future day….when I will be able to walk (even a short distance) to sit and glass….with my hubby and son…..enjoying the time in the outdoors….
I am sure that I speak for everyone that is battling or has battled a chronic, long-term illness….when I say that there comes that time that you feel that you are completely exhausted…..feel totally overwhelmed by the pain…..feel frustrated at the length of time it takes to get medical diagnoses….
What little energy remains….is used as an attempt to cover how you really feel inside…..afterall….we do not want to upset our spouses….our children…..our family……our friends…..
Yet….you feel that dark cloud gaining strength…..you feel yourself starting to succumb……you look up to find yourself at the feet of depression…..knowing that it is so close! With no effort at all you could be overwhelmed…..completely enveloped.
This is the time that is SO very hard! It is the time that I find distractions….such as this Blog…..watching a crazy/silly show on TV…..taking a nap….or looking out the window at the wonderful colors of Autumn……can give me that touch of courage…..to not give in to the dark shadow that wants to envelope me.
Our battle with chronic pain/illness is on SO many fronts! It is not just the physical that we endure…..it is the emotional…..the mental…..the spiritual battles that are waged…..all at the same time……
Well I definitely overdid over the weekend. I helped out cleaning the house on Saturday. Then went out of town to attend my Mother-In-Law’s birthday party. It was such a good time to see a huge turn out celebrating her special day! We ended the day by attending Mass with her.
By the time we got home, I was beyond worn out! I sat in my chair and couldn’t keep my eyes open! I crawled into bed at 8 PM! (I know that I am supposed to try to keep a regular sleep schedule….however, I just had to give up and curl up under the heated blanket in our comfy bed!)
I slept hard until 5:30 AM…..then had to get up and get ready for work. Moving through the thick quicksand….pushing tired, achy arms and hands to dry and style hair! Yikes!
Work was a challenge today for sure! Body was just nasty. To be expected! I was afraid that going out of town and having that type of activity on a Sunday would lead to a very difficult Monday. Well…..it certainly didn’t disappoint! LOL
At least I thought ahead to put some pork in the slow cooker….that with leftover pasta and salad….we all ate well. Saving me time to just relax in my chair under a comfy blanket!
Just about time to give in and go to bed. Will just have to try to maximize my rest this week as best I can.