chronic illness

All posts tagged chronic illness

Q’est-ce….

Published November 5, 2017 by 51percentawesome

I remember in 2013 laying awake in my shipping container and feeling *not okay*. Getting in my car to drive to a friends so he would cook me food and I could eat, cry and sleep.

I remember in 2014 going to cry to empty and cleanse my heart, and finding I could breathe, or cry, but I couldn’t do both.

I remember walking two, or maybe three steps and then waiting, for the boy behind me to get close enough to push. Sleeping downstairs so I didn’t have to walk up.

I remember when the muscle spasms started, I remember the mindless fatigue and endless scrolling in one armchair, too tired to cook and eat. Happily laying and staring at the wall. I remember driving and being unable to comprehend roadwork signage, my eyes blurry and my brain confused.

Skip ahead and I remember sleeping and sleeping and sleeping. Nausea in the shower and in the sun.

I remember walking to the toilet and laying on the floor, too tired to walk back. I remember inexplicably falling down the stairs two mornings in a row, grazing my arm. I remember the panic of being unable to name the suburb we lived in, or picture our house.

It’s been 13 months since I was able to walk. 5 months since I last crawled. My calves sit flat against the bone, my hips hollow inwards where muscles were.

And throughout it all
What is happening to me
And
How do I make it better.

Over and over and over.

What is this. How do I… Maybe I can… Maybe I should have… Why is this happening. How do I…

I live in hope and faith in my heart. My intention and purpose is to heal. To walk and swim and dance and have sex.

But sometimes. When I lay on my side and my body goes into spasms from the effort of holding me up and I consider the possibility of becoming too weak to lay on my side. when I have to hang new curtains because the light is searing into my brain, a symptom I thought I’d left behind,

I’m frightened.

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All bets are off

Published August 8, 2016 by 51percentawesome

 

I hear that when AIDS first happened, doctors didn’t know what was happened and assumed it was psychosomatic. Until people died, and they found a biomarker.

The problem with chronic fatigue is that you don’t die. With no disrespect intended to those with terminal illness, at least you know that the pain and restriction will end- usually you’ll either die, or you’ll recover.

Quality of life for people with chronic fatigue is worse than those on kidney dialysis or with cancer (study).The suicide rate is six or seven times the rest of the population.

I can move my arms, my legs, I can talk and laugh and dance and sing and do my own shopping and cooking and showering.

But for every 30 second block of activity, I will pay. With instant heavy limbs, dizziness, breathlessness. With sound and light sensitivity that makes the smallest rustle spread pain through my body like an electric shock. I will whimper as my arms and legs tremble, as suddenly I’m spent, as my gland swell, my arm pits ache, and the touch of material on my skin overwhelms me. I will lay awake, exhausted but unable to sleep, yearning to escape the nightmare that becomes my body. Exhaustion that goes on and on and on.

So I sit up slowly. I stop moving my arms, gesturing, dancing in the car. I stay away from people I don’t know, text instead of phone call. I weigh it up before I reach for things, before I move. I hold onto my pee. I rest my body on doorways, my head on couches, I sit on the floor. I stay in bed. My partner carries me to the toilet to maximise the energy I’ll have left for talking and eating, and extend the reach of the day. I only eat soft foods so my jaw doesn’t ache. I mininise sex and try not to move too much. Mininise, maximise. Careful with those spoons. If I manage it carefully, I won’t go into meltdown.

No playing with puppies. Swimming. Hot baths and showers, laying in the sun. Staying up late. Eating out for dinner. Walking on the beach. Driving. Chopping vegetables. Using my arms to pat the cat. Watering the garden.

 

Not it if I want to make it through the day.