The most difficult challenge with Fibromyalgia, Chronic Pain Disorder, Neuralgia and the many other hidden conditions/illnesses that plague us, is the reality of how our lives change.
- Photo by burak kostak on Pexels.com
As I have written in the past, we do go through a mourning process….just like when a loved one dies. It was very helpful for me to review the 7 Steps of Grief…not that it makes it easier…it reinforced the fact that I was not “going crazy”.
I was SO unprepared for the realities that would come with my Fibro and other conditions. My Faith, family, friends, and medical team have been lifelines as I have traveled along this narrow and twisted path.
- Loss of Job — I could no longer physically or mentally function in a productive manner. (I have learned to take advantage of those moments when the “brain fog” lifts ever so slightly.)
- Pursuing Disability — This turned out to be very long, challenging, and stressful. In my case with Fibromyalgia and Neuralgia (without a known cause), it took over 30 months.
- Financial Implications — Such a long wait for Disability drained our reserves, and forced more dependence upon credit. Slowly and steadily we are turning the tide.
- Divorce — The reality of the rift that had developed. My son and I are on our own. This transition to being a single parent has been rough.
- Driving Assistance — I am so thankful for the friends I have who take joy in driving me to my injections when needed. So glad that these tend to be about 3-4 month intervals!
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…
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.
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!