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The pain encompasses your WHOLE body. If it was just in one spot it would be easier to deal with, but life doesn’t work that way for you. Level 8 pain moves constantly from the top of your head-yes hair CAN hurt too-all the way to your tippy toes which like to dislocate nightly. Your hips you blame the most as their dislocations slide in out and the most painfully like a train screeching off the tracks that were created just for it. With your Ehlers-Danlos Syndrome it is a constant dislocation at least 10 times a day and that is when you are focusing so carefully on moving as little as possible. The task of focusing on how you walk, stand, sit, lay, or just overall move can be so exhausting in the beginning. Learning to move with smoothness rather than moving as quickly as possible from point A to point B like everyone else seems like it would be hard but self-preservation made it much simpler so your swollen joints would dislocate as little as possible. After 8 months you were able to claim you had it mostly figured out. The hands, though, were the hardest part for you. CONSTANTLY-and literally-reaching beyond your limit and causing that stretch that would leave swollen burning aches of popping a joint out of its proper socket were some of the worst you knew a year and a half ago. Terrifying how easily pain can worsen. And no one knows that better than you with 13 full years of constant beating, burning, aching, crushing, throbbing, searing, and lightning sharp pain filling each millisecond of life.
You try not to think of your younger self suffering through ‘growing pains’ that were so excruciating you actually would wake up screaming. Or of baby you that learned to walk late and cried so much because in actuality your leg bones were horribly twisted and the doctors who should have caught it, had no clue until you were 13. The tender, burning knee pain wouldn’t stop no matter how tough or strong you tried to be. The only fix for what should have been fixed long ago: Waist-down reconstruction. Thinking on your past life wasn’t exactly a good time though your natural soul-deep optimism kept you forgetting the bad and feeling light-heartedly good about everything else. You thought all that pain and struggle was normal. You couldn’t fully explain why you didn’t like P.E. but that didn’t stop you trying to learn to love it by taking a Strength & Conditioning class that would shine an iridescent surgery light on the crux of your already strongly blossoming relationship with pain and all the feelings of pain you could feel. Muscle spasms started out gently enough. A hard tug here, a flexing jerk there. Suddenly yanking muscles started to be a thing and before you knew it, you had violent muscle spasms happening constantly. And when you say Constantly, you mean Millisecond by Millisecond.
Standing is extremely painful as the muscles that are supposed to hold you up are constantly flexing and moving like some deranged person sliced you open and is playing music on each muscle strand, expecting you to keep moving and being normal even as your body screams for nature to right itself. Level 10 pain still rises with each new day. Your hands, so precious and vital to do things with don’t move how they should or how they used to. Swollen like balloons they have bumps and giant mountainous lumps of arthritis that ache with a fire 24/7 at the pins that seem to be stabbed into each finger that used to be so think-even described as spider-like thin. You miss that. Losing your whole body type sent you into a tailspin. Going from hourglass to pear shaped and out growing sizes like a growing child was heartbreaking. Even more so with a mother who is forever petite that unwittingly points out how much your size has changed for the very worst right when you feel you have gained back the very hard won confidence you had previously been unable to find. Still your hands hurt like nails on a chalkboard. Suddenly, after using your hands to change clothes for the day they stop working. Unable to move as if Medusa had looked at them and turned them to stone that would respond to no manner of emotion. Sobbing as your hands quit again when all you wanted was to eat a simple breakfast. WHY?! WHY do they do this??? It is as if your very spirit has gone out of them. With each passing movement your spirit pulls away from your hands, your arms, the muscle in your leg.
The next day your left leg stops working and with exhaustion borne of a desperate woman a thousand leagues past her breaking point, you stumble to your childhood-and current-bedroom with just one leg and 1.5 arms working. “Ridiculous!” you mutter to yourself. And yet, this is the life you are living. Your future is projected to get evermore worse. You had an inkling, a terrible fear that your hands would stop working because the pain was so severe your body just couldn’t take it anymore. No medications to work or even slightly help and all those years of compounding pain effects a delicate human being so much no one ever could have guessed. Ehlers-Danlos causes more problems. With the level severity you will never be able to have your own child. Something you never worried about before but you tell yourself it is okay because you wouldn’t want to pass on this syndrome. Your swallowing is nonexistent as you have to swallow with your whole desperate soul hours after eating or drinking just so you don’t vomit things up again. Twice a month seems to be the pattern with exhaustion leading the way.
Using hands that barely or don’t work to eat, teeth that ache, a jaw that has intense muscle spasms you feel it all the way down your spine. It is so much work a feeding tube is becoming a very real possibility. Did you mention you are only 25 with a quick mind subdued by the Fibromyalgia? You wanted so much more from life than this. But no time to think, after only a rare day of a break, your Lupus is back for another month and getting worse with each time. Painful, burning, red blisters hide underneath your scalp. Rearing their vengeful heads when your Lupus returns, doubling the swelling you already have. Joints pop in and out twice as often as before with tendons begging for mercy from the pain. Rashes that won’t stop itching in various places on your arms, legs, and back with painful hives randomly appearing on your face, neck, back, or torso without so much as a how do you do. Neurosis enjoys the top of your feet best. Sharp searing lightning as if someone sliced up your feet with a sharp pin so they could yank on your nerves.
The sensation moves up your legs and settles on your neck and left pointer-finger. No guesses as to when this one will end. But you know how to ignore it so you can focus on the more dangerous pains. On top of all this that happens millisecond by millisecond, your swollen and ugly fingers burn with fever. Tender bumps appear on your fingers almost as if someone took a ruler to your hands and whapped it across them for an hour or two. Your arms ache as if you were that someone, muscles spasming while equally feeling overused like jello. Crackles of pain fill your whole body all day, everyday. Joints feeling like broken bones, bones feeling like someone spliced them open, muscles aching with a scream held deep inside. Another week, and the pain rises again."
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