“I saw that you were perfect, and so I loved you. Then I saw that you were not perfect and I loved you even more.”
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I have been privately battling an undiagnosed illness since January 2015, dramatically altering my life. On my best days, I can function at roughly 70%, codependent on an adrenaline rush from a run or workout until 3:30 pm- when, like clockwork, I rapidly wither physically and emotionally- fatigued beyond function. With all the strength I can muster, I will myself to go through the rote motions of the afternoon, until 9:00 pm, when I can finally collapse on the sofa to regain the energy it takes to drag myself to bed at 10:30. It’s very important to me for my kids to feel some normalcy, and not live in fear when they see me at my worst. Which sadly happens more than I would like.
I believe we all have the capacity to know when something just isn’t right. I’m 38 years old. I have lived a healthy lifestyle for the last 6 years- organic, low carb diet, very active, strong faith, and overall, a positive person. Other than having trouble sleeping, I had no prior ailments up till the bout with pneumonia. Daily I deal with numbness in my extremities, no rhyme or reason, and no pattern readily identifiable, bilateral stiffness and pain in my hands and feet. Lately, I have been getting fevers 3 times a week ranging from 99.6-102. Some doctors do not consider anything under 100 to be a fever, however, my aging body begs to differ. 99.6 can feel really crappy. I will spare you the details of weekly GI distress other than describing my stomach as a angry boiling pot of stew that spills over on occasion. The thing is when you’re sick, you really have no idea what’s relatable and what’s just normal bodily “wear and tear.”
My blood tests have all been normal, with the exception of Epstein Barr, indicative of mono. How I picked up the cliche junior high “kissing disease” is beyond me. I had the illness in the 6th grade and have tested negative for it over the years ruling out dormancy. When I contracted the virus is unknown, sadly, because I have no idea what feeling well feels like anymore.
I met with a neurologist and a rheumatologist. Lots of tests, mostly blood work, and A MRI of the spinal cord. I don’t seem to be getting much by way of answers, other than ruling out a list of diseases that I don’t have. Medicine is an evolving science to be sure. I’m not sure what my expectations were, I suppose I envisioned leaving here with a label. I may still be getting one, but it’s not one I hoped for. Healing may not be on my impending horizon. I keep hearing chronic fatigue and fibromyalgia, most recently central sensitization syndrome. I can’t help but feel like these are code labels for we just don’t know. My symptoms don’t fit neatly into one illness- I feel like laundry strewn with unmatched socks. I’m vacillating from acceptance to hopelessness like a broken yoyo. My poor husband.
Walking around this place, thickly blanketed by dismal clouds- a cloak of weariness, stitched by hope. We are tribe shackled to sickness, in search of healing. Faces of many nations, language an abscind barrier. Somberly, time ticks slowly here, oppressed minutes in a throng of hours.
Amygdala Trauma (AT from here on). Centralized Sensitization Syndrome (CSS from here on). Apparently AT occurs when you are under emotional distress and fighting an illness, simultaneously — emphasis on this, damaging the limbic system, leading to chronic sympathetic arousal and immune dysfunction. Best explained here:
There I am on paper- again. This time, making sense. Relief washes over me, clarity in its wake. But now what? CSS is still being researched. There isn’t much out there on this. Treatment varies. Retraining the brain is required. It will be a long road. Recovery is possible, unlike the other ailments I was facing. This is good news!
CSS manifests very real symptoms, PET scans proving it. In my case: pain, and heightened sensitivities. The fatigue is from the brain being overly active sending and not suppressing messages like it’s supposed to. Best explained by Dr. Schwenk with this analogy:
When you walk into a pungent room, your brain detects the smell by messages from your olfactory system. Once it’s deemed non-threatening, it suppresses the messages. With CSS, messages are not suppressed.
I decided to share my in depth story because I have met a few people with similar symptoms. And, like me they are frustrated and losing hope. If you know someone with similar symptoms, please inform them about CSS.
A day in the life of the Jevne family….
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Kids are getting antsy, school is nearly over…May 24! It’s a struggle to motivate them. Their heads are on summer. Mine too.