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My Whole World Exists In Bed

Something I think people who haven’t experienced being bedridden don’t understand is that when you’re bedridden your whole world exists in bed. You don’t climb into bed to sleep or nap or get cozy and then get out of bed and live in the rest of the room/house/world.

You are always in bed. It’s your whole world. And I think this contributes to some of the sensitivity that severe ME/CFS patients experience. Definitely exasperated by increased sensitivity from the illness but anyone would get particular about their bed if they were bedridden.

Half of my bed is dedicated to me and the other half to storing things I need access to because I can’t get up to get things. All on my bed are: my stomach massagers (for my severe gastroparesis), ice for my stomach (ice helps my stomach feel and function better), a stack of paper towels, remote door bells which I use as call buttons when I need something, a container of water for cleaning or rinsing off baby wipe soap, a basket with odds and ends like the remote control to my A/C, masks for the smoke from the forest fires before I got an air purifier, the towel I use to cover my eyes when people come in, my white noise earphones, my earmuffs, a stack of adult diapers because I got a urine infection once and had trouble holding it in time to get a urinal and now I keep them accessible just in case, a little jar for trash, boogers, etc. you get the idea. And under my bed I’ve packed as much as possible within reach like a vibrating massager for my feet and legs which get restless leg syndrome (tingly feeling in the legs and feet that can be unbearable) from being so still or nervous system weirdness I don’t know which. Also extra backup stomach massagers in case one fails, my heating pad which I use on my feet to keep warm since I have ice on my stomach all the time. And lots more.

All these items are to me like all the stuff in your house. You are just as particular about how your house is arranged as I am about how my bed is arranged. And you get to leave the house and get away from all that stuff and move freely with few possessions. I don’t. This bed is where I reside 24/7 and I need access to this stuff 24/7.

Some symptoms of severe ME/CFS are partly just normal reactions to horrid nightmare living conditions. And they are of course compounded by the sensitivity that severe ME/CFS causes. But I think it’s important for caregivers, doctors and healthcare professionals to understand how challenging the living conditions are with severe ME/CFS and the fact that any healthy person would also react adversely and wind up acting "abnormally" in response to these conditions.


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