What a Bad Day Feels Like With EDS



Physical pain is hard to talk about, almost as much as it is to live with.

With EDS, hip dysplasia and Chiari Malformation I'm never not in pain. I think that is the hardest aspect for those looking in to my glass world to understand. But there are elevated times of pain, there are days where I dislocate more frequently. A bad day can turn into a bad night, which can turn into a bad week.


The Baclofen I take to control muscle spasticity (which are usually quite good) barely do anything during these bad weeks. My body is like rock. Like an invisible giant is grasping each and every one of my muscles and squeezing.

A sharp knife shoots through my shoulder blade. It cracks, pops, crunches. The only relief is by bending and pulling the shoulder, into place. It's excruciating, but eventually after all the pulling and popping, it becomes numb. For a while.

The pressure builds in my head. Piercing ringing screams through my ears, only stopping to change tone. Waves and static fight for dominance in this void. Tinnitus mocks my already bleak existence. My neck twists, the weight of my head is heavy as the muscles in my back lock. The giant crushes my scull with his heavy hand.

It often travels from the shoulder, pouring down the arm. Swirling like lava, becoming prominent around the joints -elbow, wrist. The fingers curl and vibrate. I lose hours, in and out of sleep, have no idea what time it is. But the giant never rests.

The hip pain is not really hip pain. It's hip pain, buttocks pain, lower back pain, thigh pain and knee pain. On days when I "over do it" it pops, then burns and swells.

My flat feet cramp. My toes turn up in an effort to stabilise my body and not fall over. My legs are numb and unusable, for the most part.

I sleep all the time, yet I never sleep. Two hours rest is the same as twenty hours. I zone out, I pass out. I dream only in lucid terms and I'm conscious of my surroundings, yet I can often not move enough to wake my body, to open my eyes.

Every day is the same. Every morning is night, and night is day. Time passes completely differently when the pain is like this. It consumes all. I have nothing or very little to do, but still don't have the time to do it. I can't concentrate on anything. I lose days. The pain envelops all my senses, the giant drinks his fill. My body turns to stone, my mind to dust.

It's really not all bad. I play and cuddle with my dogs, I watch Star Trek in bed with Bicky, and he makes me laugh. I annoy the cat and ignore the giant. Some days I do dishes or laundry or talk to friends online. I remind myself this isn't my fault. But mostly I just lose time.