Published: 27/04/2021

My day to day with hEDS

Welcome to a day in the life of hypermobile EDS (hEDS) and its comorbidities.

My head starts thumping during my sleep and turns into a sudden ice pick sensation (migraine) 3-9 times a day, and sometimes persists for hours or days.

The minute I wake up, I have ringing in my ears, I am dizzy, I have a haze over my eyes, my nose and throat are burning red, my shoulders have knots, and my feet are cramped. The ringing in my ears becomes background noise. I am nauseous from the minute I awake and have episodes of dysphagia and odynophagia. I start my morning by doing a self-scan of what hurts and putting my joints back in. I often have a ‘weakness episode’ and pass out on my bed. By this point in the day, the discs in my neck have slipped on to one another.

If I decide to shower in cold water, I have to spend time on the floor for 15-20 minutes in the high chance I will faint. Usually, this requires me laying down for 3-4 hours afterwards and sleeping to recover. I must constantly consider whether to bring my aids or leave them home because I know I will get frequent odd looks and stares; it’s exhausting. As I am doing stuff throughout the day, I experience weakness episodes from activities like doing the dishes, hanging clothes up, and getting in or out of the car. Sudden breathless chest pain goes through to my shoulder blade with blue colour around my mouth. The Bones in my body move in and out of place by doing tasks like itching my body, or pouring a kettle, doing the dishes, turning a tap, watering my plants, and holding my animals.

My sacrum subluxes several times a day… which I can feel bulging out of the joint. I don’t always notice it most of the time until the nerve gets compressed. Experiencing random and sudden stabbing, sharp, chronic prickling, stinging, tingling, aching pains in my head, neck, spine, face region, collar bone, heart, breasts, arms, fingers, abdomen, legs, knees, and toes. When it happens in my knees, I collapse from the pain.

When I am car and or outside, I am constantly moving away from the blinding light of the sun… It makes me so nauseous. Since covid hit and temperature checks became mandatory in many places, it’s been hard to explain to people that I naturally run hot. It is frustrating to explain and be believed. When I lay down or make a sudden movement, I get this paralysis pain through my spine and pelvis. And, of course, the random waves of never-ending symptoms that come and go as they please and becomes so disheartening.

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