It’s another week of electrocution.
Today, it’s my left side, zapped by live wire, spasming every time I think it’s OK to stop holding my breath. It’s my sacroiliac joint, screaming.
They say a solar flare is a sudden flash of brightness from the sun. My body is the sun, on fire, flaring bright.
A pulsing throb – a bubble of evil heaving in and out during hibernation, never fully asleep, never fully awake – nestles deep within my joint.
A warning buzz hums there, right before a breaker explodes after being submerged.
Hot coals pulse red, glowing, never extinguished.
A steel rod pumps syringes full of boiling, electrified oil too big for the membrane sac to contain, but it stretches and screams all the same.
The fizzle and pop of lights exploding with surges of heat and energy –
My body, flaring.
Like most solar flares, Ankylosing Spondylitis flares are not visible to most humans.
A pocket of lava explodes in my joints. A mini volcano.
A leak of formerly (and usually) contained pain simultaneously seizes and implodes – visualize a snowball unthrown, rewound and caught by the thrower: cold, harsh snow being sucked back into a crushed up mass of cold, melting heat.
An Octopus of Pain is hungry, reaching tentacles upward and outward, suctioning everything & shooting powerful numbing venom into nerves and muscles.
My body convulses.
Anchors fling themselves outward, hooking internal fibers at will with jumpy marionette string, controlling and contorting my body, the unwilling puppet.
The sacroiliac becomes the core, the nucleus, of decisions and pain. To otherwise move or be in control is in the face of a monster named fate.
Pain begets unchosen fatigue from a body surviving its fight against itself yet again.
The flare reduces choice to ashes.
They say to light flares when you’re in distress, lost and afraid.
My body is in distress.
A pestle and mortar grinds these joints. Are the bones just waging war, joint-on-joint?
Explosions shatter; shards of bone vibrate outward; finger-line fault-line cracks grow after an earthquake, aftershocks sending waves of grating pain, breaking apart bones that are the support beams of the body.
At least that’s what it feels like.
If you learned something about chronic pain by reading this, please consider supporting my work with a $3 tip at ko-fi.com/beingcharis. Your support will help cover the electric bill supporting my heating pad.
6 thoughts on “What the Flare? Ankylosing Spondylitis In Distress.”
I just got diagnosed of AS this month of May, after many, many years having a lot of problems with my back, my feet, knees, ok all my body and thanks God my doctor by accident or good luck, notes something wrong with my feet and after that, everything change. After back surgery and other surgeries, finally I know what I have. Thanks for your stories, make me feel that I am not alone. Thanks
Leonor, I’m so glad you commented! I’m sorry for your diagnosis, but relieved for you that you know what’s going on with your body. Keep taking it one day at a time!
Hello, I’ve just been diagnosed with AS and your work speaks so much truth of how I’ve been feeling and my experiences. Thank you for sharing
Hi lianne, nice to hear from you. I’m glad you are searching for support, it’s what will carry you through living with this disease.
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Charis, I upgraded your subscription to the service you use for donations to support your blogging. I did that several months ago. I did it because as an AS warrior myself, I VERY MUCH appreciate what you do to help spread awareness for OUR disease that is far more common than people could ever imagine, yet is unheard of by 98% of the people I’ve met in my life. As a 52 year old man who has been blessed with a wonderful wife of more than 30 years, two grown adult sons who so far show no signs of developing AS (age 25 & 29), and even more amazingly a successful business I grew from scratch, We are forecasting our business to gross over $1,000,000 this year. We anticipate that our business will now provide us with small six figure income for many years to come. I was able to buy my house for my wife (who is disabled too) and I, with cash, and therefore don’t have a mortgage to worry about. Knowing you had just purchased your new home, a dream you worked towards for years, I felt compelled to try and help you in a way I saw as something that cost me well under $100, but that I hoped would benefit you to increase donations to help support your continued blogging and spreading awareness for this disease I’ve been fighting since before I was even a teenager. I hope you were notified that I upgraded your subscription to the service, and I hope and pray it has helped you in some small way for all that you do to help all AS worriers by increasing awareness. I’m no longer shocked when even a Dr I see doesn’t fully understand AS or how much of an affect it has on those of us afflicted with the disease. I know you are doing a great service for us all. Thank you for fighting the “good fight” and being so open and honest in sharing your experiences with the many who read about everything you share about the struggles of living with AS. My wife also has Fibromyalgia in addition to degenerative disc disease and a fused lumbar/sacral back full of titanium. She may not have AS, but she lives with equal difficulty in every day tasks, and as my former caregiver, now receives more help FROM me than she is able to provide FOR me. She has always stood by me through my fight for a confirmed diagnosis when we were just kids in our early 20’s, so I’m happy to everything I can to help make her life easier in whatever ways I’m capable of doing. When she was forced to give up her career at the point where she was finally earning 6 figures to provide for our family, since (as you know) my disability check of less than $1500 a month isn’t even close to enough to live on, she was SCARED for our future. I was blessed enough to start a business and grow it to the point that it will replace the incomes we had become dependent upon. I don’t ever forget how blessed we are, and I found inspiration in your blogs during times in our life when changes were happening faster than we had time to absorb and react. It was a motivator to read how you found ways to overcome obsticles you faced every time they seemed to come up in your life. Again, thank you for the work you do. I believe you are an inspiration to many others, just as you have been for my wife and I. 😇❤️🙏🏻 God Bless, Budd (and Mary) GeigerAn appreciative fan who truly “gets it”BG Family, LLCDBA Walsingham Arcadewalsinghamarcade@yahoo.com12541 Walsingham RdLargo, FL 33774(727) 642-0782 (cell)(727) 281-9737 (business landline/fax) PS, If you ever get an opportunity to make it to the Tampa Bay Area in Florida, know that my wife and I would be honored to have you as a guest in our home. We may not be super wealthy, but we are blessed to be comfortable and able to provide ourselves with our own small piece of the American Dream despite the fact that we are both quite handicapped. Although you don’t know us at all, we feel like we know you as a result of following your blog for years now. We’ve never extended an invitation to stay in our home to a stranger, however, we can tell from years of your blog that you are a kind soul who has dedicated her life to spreading awareness about AS, a disease which robbed me of the career I chose as a young man, and profoundly changed the course of my life, as well as my family’s lives because of this disease that impacts so many lives, yet so few have ever heard of, and worse yet, the American medical community doesn’t even know that much about.
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Budd, thank you for sharing more of your story here. I am still very appreciative of your kind gift of Ko-fi gold. I have not been able to take full advantage of it yet because I am not a small business, which I would need to be to set up the kind of PayPal account to receive regular ko-fi contributions. I’m working on it, though, in the middle of trying to manage this new house and a body that is tired. Whew! Life! Thanks for your invitation to visit in Florida – I’ll keep that in mind! Best – Charis