Here’s to all of you with chronic illnesses and conditions! During this latest flare (Fibromyalgia, Polyarthralgia, Piriformis Syndrome, IBS-C) plus additional infections (bacterial vaginosis and yeast infection), I looked at myself in the mirror and simply said:
“I am going to make sick look good!”
My chronic conditions have taken enough! I will embrace my “new” fragile self and continue to thank God every day for his strength and courage to allow Him to be seen through my weaknesses.
Those of us living with Fibromyalgia and its chronic pain (or chronic pain from other conditions) often find ourselves ravaged by a storm…literally! Scientists can argue that there is no relation…that it is not possible. Yet we know there is a link.
Our bodies shut down with no warning. Struck in the gut with a baseball bat. Then the pounding truly begins…every joint stabbing…headache is piercing. Every ounce of energy invoked to attempt movement…feet act as though they are trapped in the thickest mud…legs groan at the beleaguered motion.
Tears well in my eyes. I can barely manage a weak good night as I muster all effort into shuffling back to my bed. Past experience has taught me to not fight this demon. It is best to lie down…propped with pillows to provide as much relief as possible.
This will pass. I am hopeful for the morning as the worst of this storm will be over. My body will be exhausted and require additional rest.
This is a vicious cycle that so many of us live with…as we continue to battle our conditions and symptoms.
Rain brings an increase in temperatures
As it washes snow off the lava…
Rain brings the wind blowing the tree limbs
While cascading the water down the glass…
Rain brings the storm from the Northwest
As it batters the roof and races down gutters…
Rain brings increased ringing in my ears
Drowning out external sounds with its deafening pitch…
Rain brings the joint pain out of remission
Removing the relief of the higher elevation…
Rain brings elevated pain levels
As my body screams out for it to end…
The frustration is real even though progress is occurring. Sounds like a conundrum doesn’t it?
Injections for Sciatica have provided some limited relief…unveiling that I am also dealing with Sacroiliac involving my right leg. And, these new diagnoses have aggravated my Shingles…which also targets my right leg.
Needless to say my usual “companions” are quick to throw in their two cents…like I need to be reminded of my Fibromyalgia, Polyarthralgia, Spastic Colon, Pelvic Floor Syndrome, IBS and other conditions.
I have more to learn about the issues in my stomach that are leading to bloating and cramping (which are very scary with a colostomy); and, its interaction with my other conditions. Another diagnosis that will provide more information on how my body is “malfunctioning”.
It is frustrating to be home bound…yet, we are making progress in uncovering other conditions that have been masked by the overwhelming symptoms of Fibromyalgia and Polyarthralgia. (Thanks to my pain pump!)
It is discouraging to know that any time I leave the house it will result in a Flare. To be honest, just getting out of bed wrong can do the same!
The struggle continues…
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.
In the early morning hours while saying a prayer, images were brought to mind. It was as if I was watching a slide show highlighting the path of chronic illness that I have been traveling. So empowering and providing such a tremendous peace, that I must share!
With spot light in hand, God provided a glimpse…a “bird’s eye” view of my path. It was like looking at a map. I could see that with each boulder, rock slide, downed tree, or gaping hole there was a small, hand drawn box. The boxes ranged in vicinity to the obstacles…sometimes it was next to the obstacle, sometimes it was a mile…yet with EACH impediment there was a box associated with it.
This personalized Isaiah 64:8 — “But now, O LORD, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.”
These boxes were the many “tools” that have been given to me! I am truly humbled and overwhelmed as I ponder this revelation…friendships, medications, Bible verses, change in attitude, phone calls, songs, surprise visits, text messages…
Some of these “tools” reappear to demonstrate how some are repurposed like my hernia belt that my husband had modified for me due to my Colostomy. This belt is now providing some relief to the Sacroiliac joint that is inflamed as I await the appointment for a steroid injection to reduce symptoms.
As I await results from additional testing, I am thankful for the “tools” that God has granted to me, especially for my family, friends, and medical team.
These pictures reflect the reason that we choose to join our families…our chronic conditions would prevent such moments.