Stretching reminds me my body is capable of great things
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Stretching reminds me my body is capable of great things

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me/cfs is so horrible. my quality of life keeps getting lower and lower even when I think it couldn't get any worse. pacing is so tedious and basically impossible to keep up continuously. I just want to feel a little normal sometimes.
I coined the phrase "going to Africa" to mean going to eg medical appointments i'm expected to attend even though I'm somewhere between house bound and bed bound leading to a crash lasting a month or more Let me explain:
My parent/carer is housebound herself and she was fond of saying "The medical center might as well be in Africa" when they expected her to come in.
So now when I eg have to be seen at the medical center to be referred for a needs assessment or go to be given an injection i say i'm going to Africa.
edited to add: Every visit to the doctor, i have to ask will this help enough that it's worth making myself worse for months.
sometimes it's wise to spend your limited energy doing something that will save you energy in the future.
I have set up a smart home power strip. Now I can turn on and off the heater and a brighter light from my phone. I had to get up anyway to turn the heater off because it was too hot.
edit: I have purchased a wifi smart home light bulb. This will allow me to do the same thing with the main light in the ceiling.
Thinking about in the Simpsons when they compare single live to married and one sleeps in a racecar bed and the other a big bed with their wife. I wish I was a big bed for a wife.

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shout out to all the disabled people who are mostly housebound and rarely leave home. shout out to all the disabled people who are completely housebound and haven't left your home in days/weeks/months/years. shout out to all the bedbound disabled people and those who don't have the supports to go outside or leave their spaces.
I love you. You are deserving of love and friendship and whatever else you need to be happy and fulfilled and do the things you want to do in life. Don't let anyone ever tell you otherwise.
Hey bedbound folks im switching to a medical bed very soon, what are your recs for mattresses? I have the budget to buy one out of pocket since I'm not paying for the actual bed.
My current mattress is very supportive with springs, latex AND a foam topper which makes it also on the softer side of semi soft
However its way too big and deep for a medical adjustable bed
So im thinking of going for medical grade foam with a supportive firm base and multiple soft layers but im worried I won't have enough support and even though I won't have pressure points that can cause sores or injuries, I'll get fatigued because of the lack of support/elasticity
Laying down on a hard/non supportive surface fatigues me actively and can trigger a PEM so im a bit worried about switching to a foam mattress but anything else will be too thick to bend
Also i did try the "egg" style medical mattresses at the hospital and they were soooo hard for me lol
Anyone else with very severe fatigue can pitch in?
Please help circulate <3
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