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Community Collab: How do you cope with the changing seasons?

Posted by on Oct 21, 2016 in acceptance, community collab, coping, featured, inspiration | 6 comments

This time of year is the hardest seasonal transition for me. As the days grow darker and colder, I feel myself sinking into depression—and I have to work VERY hard to not let that take over. So I wondered this week: How are YOU coping with the changing seasons? Kirsten said “complaining about my knees like an old lady! nah mostly I get the lovely scarves out and bundle up a lot. Also lots of curling under my heatmat in bed lol” (which made me want to research the full-bed heating mats I’ve heard great things about…) Beannachd said “I usually get super psyched for Halloween. It is the best holiday season! But the thought of the cold and the pain has got me really down this year. I lost the entire month of August and half of September to a migraine (apparently generic Kroger brand Afrin and Flonase are NOT the brand name ingredients!!!) Took me a month and a half to figure it out. I’m still not 100%, so when the pain hit with the cold snap, I just wanted to cry. It’s been in the 70s and 80s here this week, though, so I’m laying out and baking the pain away while I can. It has helped me resign myself to sweaters and socks at night. So I am trying to get into the spirit of my favorite season – Halloween lights are up, and we may leave them up til spring! Spiderwebs and spooky things and watching Hocus Pocus and Nightmare Before Christmas – I totally want to be Sally! Mostly trying to enjoy what I can, and I’ll deal with the rest as it comes.” (which made me go pull out my halloween pumpkin, fill it with candy for the neighbors, and sneak a piece or two for myself…) Kyrie-Inn said “So much different in FL than it was in CT. Less adjustment. Miss my foliage though.” (which made me remember to appreciate the changing colors of all the trees around me here in Chicago…) Mary said “Here in Vegas the seasons don’t really change…” (which brought back fond memories of work trips there in January and February years ago, which offered me some respite from the snow and frosty temps here…) Delores said “I change the color of my blanket on the couch.” (which sounds like a dandy idea, so I went and swapped out the quilt on our living room couch…) And Laura simply said “Badly.” (which reminded me of how tough it is to cope, sometimes…) I hope this handful of interesting and fun ideas—and frank conversation about the realities we ChronicBabes face—is helpful to you. Feel free to continue to...

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Community Collab: What’s your personal mantra?

Posted by on Oct 14, 2016 in community collab, coping, featured, inspiration | 4 comments

Y’all! Y’all. You’re really inspiring me with this one. Each week, I host a community collaboration post on Facebook called Question of the Week (QOTW). This week: What’s your personal mantra? And you were not shy: + Peace is every step (that’s mine) + Arrange whatever pieces come your way. – Virginia Woolf (She was one of us) + We would never allow others to talk to us the way we talk to ourselves…. When my negative self talk is beating me up I just think if anyone else called me ugly, useless, pathetic etc. I’d throat punch them. So I can’t let myself do it either (bc throat punching myself would be hard.) + Whatever you *can* do is good enough (Abandon perfectionism and unrealistic expectations). + Breathe in the good and breathe out all the bullsh*t. + I’m. Not. Dead. This is my morning wake-up call. Life might be **** but I’m amazing. + Mine and my husband’s motto is onwards and upwards. Together is stronger xx + All you can do is all you can do and all you can do is enough (from a book of the same name) + I am one. I am whole. I am not my strengths. I am not my weaknesses. I am one. I am whole. + You gotta l-i-v-e, live! Otherwise, you got nothing to talk about in the locker room. – Maude, from Harold and Maude + A quote from Jesus’ Sermon on the Mount. It is “Each day has enough trouble of its own.” I frequently have to remind my husband and son, and myself, not to borrow trouble and to focus on the task(s) in front of me. I don’t have the time or energy to waste in worrying about how bad something COULD be. Dealing with one thing at a time keeps me sane. + You can do this. One step in front of the other. + Inch by Inch life is a cinch… Yard by Yard life is very hard… + Push out the jive, bring in the love. + It’s just what you do. – I got that from a 90-year-old man who takes care of his heavily disabled son. His son commutes to his janitorial job on the T and one day took the wrong train so every day this man waited at the wrong T stop in case his son made the mistake again. Every day. I told him he was a phenomenal father and he said, “It’s just what you do.” + She believed she could so she did + Tomorrow is another day. + You’ve got this. + I can’t. God can. Let’s go!! + Find the happy + Always forward. And then, at the end of the day, “this is life.” + Still I...

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Community Collab: What’s your favorite feel-good book?

Posted by on Oct 7, 2016 in community collab, featured | 5 comments

This week in our Question of the Week (QOTW)—which I post on my Facebook page—I had a little fun reading through your favorite feel-good books. I got some great ideas! Here they are, starting with mine: I keep coming back to Thich Nhat Hanh’s Peace is Every Step, which I love so much I tattooed the phrase on my arm. Joanne loves Fried Green Tomatoes at the Whistle Stop Cafe by Fannie Flagg. Kyrie-Inn loves anything by Oriah Mountain Dreamer. Laura loves Out of Africa by Isek Dinesen. Andrea loves Pride and Prejudice and Zombies by Jane Austen and Seth Grahame-Smith. and Gwynn says: Elizabeth Tova Bailey’s Sound of a Wild Snail Eating. She has an illness somewhat like mine, yet despite being unable to move for days—or rather, because of her immobility—she was able to make an original contribution to science. Beautifully written and powerful, it changed the way I see snails. I also read her description of her illness and feel less alone. Did we miss a book you just adore? Have an idea for a future QOTW? Add it in the comments below!...

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Community Collab: How do you de-stress?

Posted by on Sep 30, 2016 in community collab, coping, featured, self care | 0 comments

Some days, we just need a little help to de-stress. Oh, what am I saying?! Every day we need to work to de-stress! So this week, our community collab post includes tons of things y’all love to use to de-stress. Personally, I like a hot bath, a lake view, some classic sci-fi, a little bourbon or some hot tea, some nice hand lotion, a great playlist, or meditation. Here’s what you offered (I got a lot of ideas!): Move a muscle, change a thought. Oh, and dogs. Sunshine and bare feet on the grass. If I can’t get out of bed then it’s binge-watching anything good. Cannabis, hot tubs, music. The beach. Salt air. Sun not necessary. It cleanses my soul. Something so large and powerful. I feel closer to God. I have to admit – today requires a Xanax. Hot tea & some chocolate, liberally apply a cat to my lap with my feet elevated and watch some distracting tv/movie or read. If I can’t sit, then some favorite music to move around to as much as I’m able that day. Hugs my critters. Watch a documentary (new info takes my mind off of what is making me antsy). Crafts. I have a chaise lounge in my backyard and I love sitting in it with a book or magazine. First go-to: fill the tub with sea salt and a few drops lavender essential oil, turn off the lights, candles, candles and candles and Vivaldi’s Four Seasons. I also love doing meditation or just listening to my iPod and a good book at Montreal’s Botanical Garden, literally a few minutes walk or 1 bus stop away on low spoon days. Epsom salts bath, then some restorative yoga. Unless it’s a really bad day and I can’t get in and out of the bath, let alone up and down off the mat. Those days it’s funny shows on Netflix or something. The Big Bang Theory is my happy place. It allows me to forget the pain for a half hour. I also enjoy guided meditations on YouTube. They are a huge help. On good days taking our kitty for a walk in the nature trail nearby. Being in the woods always restores my spirits. Meds, nap and read. Sitting under a shade tree looking out over any body of water. Taking a nap with my puppies! A nice long, hot bath and some gentle yoga usually help me destress! Even with this achy body, stretching is like meditation to...

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What’s the worst/dumbest/most angering thing people say about your illness? #QOTW #CommunityCollab

Posted by on Sep 22, 2016 in community collab, Creativity, featured, friends and family, ranting, relationships | 11 comments

This week, I tried an experiment. Our Questions Of The Week (QOTW) feature has been awesome this summer, and I thought I’d try asking a question about something negative (I usually go for the positive, or at least neutral). And y’all went CRAZY! Here’s the entire original post; it has 62 comments! I’m so in awe of this community. We have to deal with so much, and so many of you posted things and got a ton of commiseration and support from others – I’m really proud of you all. I’m working on a PDF soon that will address potential answers (snarky or not) to all these comments and more. Here are some examples: In no particular order: a list of things that people say to us that make us want to go all HULK SMASH on them. Feel free to add more in the comments. And to share with folks so they learn what NOT to do. AND this is only a partial list of what people said on Facebook. For the full list, visit the original post, and feel free to comment there, too. I’ll start: “It could be worse” – someone said that to me yesterday and it made me so mad. Of course it could be worse! But as someone who’s so dang positive all the time, for one moment, can I just get a little support? And then you can help me find perspective again? But maybe NOT by saying “it could be worse”? “But you’re too young to be disabled or sick” (usually with “it’s such a shame” tacked on to it if in a wheelchair and therefore my M.E. is visible) – my age has nothing to do with it and it most definitely doesn’t make me feel any better to be reminded that I should be in work/in love etc because of my age. “Exercise more , that’ll get rid of it.” “I am so sorry you’ve chosen to tie yourself to Big Pharm. I wish you could have found alternative or holistic solutions. I mean, have you tried…” “Oh, I thought you must have been all better as I see you leaving the house”… ugh. Made me feel so frustrated because I know that is how SO MANY people think. “You miss too much work, maybe you should think about getting on disability.” (In reply, one babe said: “I did go on disability then was told by the same people, ‘you’re so lucky, how does it feel to be on permanent vacation.'” Then the original poster said this: “I’ve totally heard that when I return from a medical leave. I guess the trick is to learn to disregard those types...

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Community Collab: What movie do you watch when you need a good cry?

Posted by on Sep 16, 2016 in community collab, coping, featured, inspiration | 2 comments

This summer, we’ve been hosting Questions Of The Week (QOTW) on our Facebook page, and it’s been great to see what our community is into! Last week, we asked: what movie do you watch when you need a good cry? I’ve gotta say, I got a TON of ideas from you… thanks! Bookmark this page, babes, so you know where to go the next time you need to blubber. Here they are, in no particular order: Contact (that’s mine) Homeward Bound You’ve Got Mail Dolphin Tale Steel Magnolias Melissa says: “I’m not one for sad movies, but there are a few episodes of Doctor Who that give me leaky eyeballs.” hee hee! Moulin Rouge! Lord of the Rings Little Women (1994 version) Somewhere in Time A Star is Born Marley and Me (this one got a lot of upvotes!) Saving Private Ryan Bridges of Madison County Harold and Maude Love Story My Girl...

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Info posted here should not be considered medical advice; it's not intended to replace consultation with physicians or other health care providers. 

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