8 Comments

I missed this one somehow Janey. So moving. We must schedule in lots of rest time when we come to visit. 😘

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❤️You speak & write so eloquently.

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I LOVE the story about your magic trick. I can totally imagine showing you off as a kid doing that! Ha. This is beautiful, the entire post. It's also such an important window into your experience. Sending you love, and glad you have an apple watch to ping your leg fairy when needed.

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Thank you so much. X

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i found that so interesting!

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Great! Thank you for reading. X

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Hola amiga! I know how much you love music, so that's a nice addition because we're connected when I listen to the song you've chosen. I appreciated the description of lassitude, especially the line "Where fatigue can be limiting, lassitude is debilitating." I'm interested in the strategies you use to deal with it, but I'm not too happy knowing you are laying on the floor unable to get up! I can see how your experience can help others plan ahead, though, with the pillows for comfort. I'm thinking how important a cell phone is, or whether you have other ways to let T know where you are, or if you have an emergency stash of things you need in different places in the house. In terms of other people visiting, I think it's good that people know to allow you time to recuperate/ rest, like you write, fatigue or lassitude may not be obvious. Great writing as always; you're the best! Lots of love to everyone.

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Thank you for your comments my beautiful friend. There are a few strategies for dealing with fatigue, but there aren't that many for lassitude. Caffeine and sugar help, but they're not ideal. It really requires lying down. I got my feet on the bed today. Hip hip hooray! I fell out of my wheelchair the other day and luckily had my apple watch on so I could call T who called a neighbor. I think I'm going to try and learn floor to chair transfers next. I've begun investigating how-to videos online. Lots of love to your lot, too. x

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