In the darkness

August 8th is Severe ME Day and this year’s theme is home care. I’m going a but tangential here because I’m not exactly writing about the need for home care for daily living (which I certainly do need). Nonetheless, when I heard this year’s theme, it reminded me of my experience with professional in-home care visits I received from the hospital discharge order.

Severe ME Day 2015. #sufferingthesilence photo

Severe ME Day, 2015.
I wanted to mark my arm with “M.E.” like others have done, but decided not to because, thanks to M.E., I wouldn’t be able to wash it off for a long time. Taking a shower is a luxury that I have not been able to enjoy for months now.

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I’ve had the same hair style for a while – long hair dyed Burgundy, which would fade to brown, and curly permed, so that I wouldn’t have to do anything to my hair everyday. I’ve always been an I-would-rather-sleep-five-more-minutes-than-do-my-hair-or-makeup person, so I do not even own a brush for my hair. All I needed to do was to run through my hair with my fingers while shampooing.

As my M.E. picked up its pace quickly since last year, my hair washing became less and less frequent. By early spring this year, it was down to once a week, and by May, even that was becoming increasingly difficult. I hadn’t washed my hair for two weeks when I was admitted at the hospital.

At the hospital, when I asked for dry shampoo, they gave me a shampoo cap that I did not know existed. I just had to wear it like a shower cap, and someone would “massage” my hair to wash it with soap and water that were inside the cap. I brought a few of them home with me when I was discharged and used it occassionally. But shampooing this way while lying in bed meant no detangling hair during the wash – in fact I think it made it worse. Also the oil and dirt that were building up on my scalp could not be rinsed away.

On one of my better days several weeks ago, I noticed a giant knot on my hair. My ponytail was undone from rubbing my head against the pillow, and I couldn’t tie up my hair again because of the tangles. Without thinking much, I started running my hands through the mess.
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