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5 strategies for facing the upcoming holidays with chronic illness

Posted by on Nov 9, 2017 in ChronicBabe Basics, coping, holidays, relationships | 7 comments

I used to really dread making it through the winter holidays with chronic illness. And I do mean “making it through”—that was the best I could hope for, never mind actually enjoying them! It felt like I had to claw my way through them.   All the ways the holidays can go poorly While it felt like everyone else breezed from party to party, I agonized about how to manage my limited diet when facing big, luscious buffets packed with things I knew would not feel good in my body. I watched in envy as friends wore cute, sparkly heels, while I crammed my pained feet into clunky boots that could accommodate the wool socks my Raynaud’s phenomenon-having tootsies demand. And I never felt like I had the energy I wanted as I socialized, and when I did, I would sometimes find myself without a lot to talk about. When you’ve gone through an extended period of illness, or fatigue, or depression, it can be hard to make witty small talk. And when it came to gift-giving, I frequently felt stressed out by planning, shopping, and wrapping. But mostly shopping: The malls! The driving! The carrying heavy bags! All while wearing a heavy Chicago coat in Chicago winters! I would count every penny and have to take deep breaths as I processed each purchase. Family was sometimes tough, too. While some family members are cool, some really don’t accept my health-related limitations, and that leads to a lot of awkward conversations and situations. It wasn’t all bad… I mean, I’ve also had some pretty great holidays. Decorating the trees, visiting my nieces, drinking hot cocoa by a toasty fire, sledding, goofing with friends. But let’s be real: The holiday season brings a lot of pressure. It’s hard not to succumb to the pressure to be everybody’s everything. We sometimes feel like our illness should take a vacation so we can meet the expectations of others. But that’s not how bodies work, babe. I know you know that, but the holiday season is going to try to make you feel otherwise. So let’s talk through a few changes I’ve made during recent years that have ensured my holiday season is much more enjoyable. These definitely have not removed all the stress, but they’ve minimized it, for sure. And it gets easier every year.   5 Strategies for making the most of the holidays with chronic illness: Stop sending holiday cards. Seriously, they cost a bunch of money, and most people barely glance at them. You spend hours shopping for them or designing them; you spend much moolah on printing or purchasing them, plus all that postage. And you wear yourself out putting together the mailings....

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My hero, on a step ladder (sometimes we just need a little validation)

Posted by on Nov 8, 2017 in caregivers, featured, relationships, Uncategorized | 19 comments

Last week, I had a super-aggravating experience related to what my husband, Joe, and I jokingly refer to as one of my “fibro super powers.” But luckily, it ended in the kind of validation I think we all need.   Every sound is so loud! Since I developed fibromyalgia 20 years ago, I have become extra-sensitive to everything—especially sound. I remember those first years post-diagnosis, when I would get frustrated about the sounds my neighbors made. I found myself plugging my ears every time an ambulance or fire truck went by, and started carrying ear plugs to wear whenever I traveled. And it’s not just the sound itself; the bass of loud music or trucks going by is also really tough on my system. And when you live in a huge city, it’s hard to escape. My amazing hearing is a terrible “super power” to have! But no one around me seemed to experience the same sensitivity; in fact, when I would complain about the issue to people I was close to, I was mostly met with blank stares, or flat-out negation. “I don’t hear it, so I think you’re imagining it,” my ex would say. “It can’t be that loud if I can’t hear it, so can you just ignore it?” he would ask. Um, no. He certainly was not the only person to minimize or deny my experience; co-workers, friends, and family all did the same thing. That negation was not intentional, I’m sure; I know that none of the people who did it was actively trying to hurt me. But wow, did it hurt. I learned to keep my mouth shut, even when it was causing me extreme distress. Sometimes, I would curl up in a ball in bed, with piles of covers over me, ear plugs in my ears, and just cry. It wasn’t just the constant negative sensation of the rock music from upstairs, or the nagging hum of the truck idling outside my window. The thing that hurt most was when people would shut down my concern or negate my experience. Experiencing validation from my community Recently, I attended a retreat for women with chronic pain. Spending a weekend with a handful of women who immediately “get” your experience is powerful. During one conversation, I discovered that at least two other people there with fibromyalgia or other chronic pain conditions also live with the intense sound experiences that I have. It was amazing—I mean, I was literally amazed by how good it felt—to be heard, and to experience validation. Just knowing that someone understood my experience, and told me it was okay to be upset by it, made me feel like less of...

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How to respond when someone says “this is what you have to look forward to when you’re old”

Posted by on Aug 30, 2017 in activism, ChronicBabe Basics, featured, relationships | 17 comments

Yesterday, I was relaxing in the hot tub at my gym. I had just completed an hour of strenuous water movement class, and my body was like WHAT ARE YOU DOING TO ME…so the hot tub was an essential relaxing moment. The usual gang of fellow classmates was there—women, like me, who take the class because it’s accessible despite physical limitations. What you need to know is, everyone else in the hot tub was a solid 20 years older than me. And that’s all good. We’re all in it together. (I mean, literally in it!) But yesterday, a woman I’ve never spoken with before turned away from a group conversation about chronic pain and illness and said to me: “This is what you have to look forward to when you’re old.” Sigh. I hate these conversations. I’m not sure what the goal is of someone who says that. Are they trying to freak me out about my future? Sorry, babe, I’m not that easily scared. Are they feeling awkward because they’re leaving me out of a group conversation, and somehow trying to explain why? But in a backhanded way? I don’t know. I can’t understand the benefit of ever saying that phrase to someone. I know I look younger than I am; no one ever guesses I’m in my mid-40s. And I’m the young one in the class usually, so I stick out. But still: There’s no need to single me out. An awkward conversation Anyway, I took a breath and started my usual spiel: “Actually, I’ve had chronic pain and illness since I was 25, so your conversation is familiar to me. No need to explain.” Her: “But you’re so young! You were diagnosed when you were 25? Oh, that’s so horrible! I’m so sorry.” Me: “Thanks, but no need for sorries. I’ve worked it out and actually made a life for myself in spite of it, and I’m proud of my work.” I described ChronicBabe, which she seemed to find fascinating: Her: “Oh, you’ve really made lemonade out of lemons! Good for you! But I’m so sorry.” Me: “Really, no sorries necessary. By the way, what’s your name?” We introduced ourselves, and then I said: “Of course, you can always just call me ChronicBabe if you forget my name.” Her: “Oh, no, I could never.” She looked down. She got uncomfortable. She started to climb out of the hot tub.  Me: “Okay, nice talking to you. Have a great day!” Her: Grumble grumble awkwardly departs. Is it generational? Sigh. I think maybe it is; I talked to my physical therapist about it today, and she reminded me that people a couple decades older than me were raised to...

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How to say “no” when someone keeps buggin’ you with questions about chronic illness #AWAPwednesday

Posted by on Feb 1, 2017 in ChronicBabe Basics, featured, friends and family, ranting, relationships, self care | 2 comments

Do you get tired of people asking you to justify self-care? Are you sick of answering probing questions about “what’s wrong now?” when you need to reschedule something? Me, too! Today I’ve got my favorite phrases for shutting down those conversations and moving into more productive territory: I think this is something we all deal with, so I came up with a bunch of tips to help you – adapt them to your particular needs. *AWAP = As Well As Possible Now it’s your turn: How do YOU handle conversations where people push back when you set boundaries? I want to know! Tell me all about it in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 130 videos packed with practical advice, lots of humor, and bloopers. Lots of bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches!   (Rough) Transcript: Aw, thanks, but I’ve gotta wash my hair. Gee, that’s a nice invitation, but I have another commitment. Wow, you’re tenacious — thanks, but no thanks. Aw, hell no! Hi! I’m Jenni Grover Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK?   Today I want to talk to you about saying no to people when they won’t stop buggin’ you about your chronic illness (or limitations related to it). I was talking with a friend the other day, and she lives in a community where people really push and push if you say no — they demand an explanation. I think that’s baloney! Most of the time, when you say “no” to someone, you don’t owe them a detailed explanation. But people can really make us feel like we have to explain ourselves. Today, I’m sharing a few strategies I’ve learned through the years that shut down unwanted conversations. Let’s say you need to cancel a coffee date with a girlfriend because you’re having a flare-up. You call her and say “I’m having a flare-up, so I’m sorry but I need to reschedule.” She responds with: “But why? I thought you were fine yesterday?” You could: Go into a lengthy explanation of your unpredictable chronic illness and its daily attempts to steal your fun. (That can be a real downer for both of you!) You could get defensive, and end the call abruptly. (That could damage your friendship!) Or… You...

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How to be a great significant other to a person with illness #AWAPwednesday

Posted by on Nov 30, 2016 in caregivers, ChronicBabe Basics, featured, relationships | 14 comments

Hey, sick chick! So glad you found this video. Now, press pause and go get your significant other, or your SO. I’ll wait. OK, great! Hi there. I’m so excited to talk to BOTH of you. This week’s video is the last of 2016, and it’s for all those folks who love us ChronicBabes: husbands, wives, spouses, partners, girlfriends, boyfriends, lovers… this video is packed with advice for how to be a great significant other (SO) to a woman with chronic illness. I hope you find the advice helpful, and I encourage you share this video with anyone who might benefit: *AWAP = As Well As Possible Now it’s your turn: How do YOU support your ChronicBabe? How does your SO support you, babelicious? I want to hear from both of you! Tell me all about it in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 130 videos packed with practical advice, lots of humor, and bloopers. Lots of bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! (Loose) Transcript: Hi! I’m Jenni Grover Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK? Checking in Everyone gets a little embarrassed about feeling sick and can feel afraid to burden friends and family with problems. That’s where you come in. Once a day, you should check in with your SO and ask how she’s doing and if there’s anything you can do to help. Sometimes she’s really, really hoping for some help but won’t ask for it because she doesn’t want to create extra work for you. Checking in is a good way to let her know you are always willing to make the time to help her and show that you’re there for her. Listening Sometimes we just need a shoulder to cry on. Seriously. It’s understandable that you’ll want to problem-solve, because you hate to see your SO in pain or sad. But try not to assume that’s always the best move. When your SO brings up a tough subject or challenge, consider asking this question: “How can I help you right now?” She might say “I just need you to listen so I can get this off my chest.” There will be time for problem-solving later. Be a battle buddy I recently spoke to a U.S. Army war veteran,...

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5 Ways to Feel Sexy Even if You’re Sick #AWAPwednesday

Posted by on Oct 19, 2016 in ChronicBabe Basics, coping, featured, relationships, self care, sexuality | 2 comments

If you have chronic pain or illness, a decent part of your day is taken up with self-care and managing symptoms. Sometimes, you can get lost in that process, and forget that you’re also a sensual being. Today’s video includes five things I do all the time to maintain my sexy ChronicBabe side… and I’ll be curious to hear what works for you, too!     *AWAP = As Well As Possible Now it’s your turn: How do you nurture your sexy side? Tell me all about it in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 100 videos packed with practical advice, lots of humor, and bloopers. Lots of bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! (Loose) Transcript: Oh, hey there. Hello. (Blows a kiss) Come sit down and let’s have a little chat, shall we, sugar?   Hi! I’m Jenni Grover Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK?   I’m sure you could tell from the intro that today, we’re talking about how to feel sexy even if you’re a sick chick. This is a challenge for me, and for many of us. If you have chronic pain or illness, a decent part of your day is taken up with self-care and managing symptoms. Sometimes, you can get lost in that process, and forget that you’re also a sensual being. For me, sexy is all about sensuality. Because I have fibromyalgia, my senses are always heightened to the max – that’s a huge part of the illness – so I often feel like I’m on overload, but mostly for BAD sensations. Embracing sensuality is about turning on your senses to all the GOOD sensations out there. It’ like pointing your little radar dish toward deliciousness. Here are a few ways I embrace sensuality in my day-to-day: When I wake up in the morning, I sometimes stretch and roll around in the bed like a cat. I try to embrace the languid nature of the wake-up time, enjoying that feeling of being in between asleep and awake. It’s lovely. I always put on some essential oils. You can buy these online from a number of retailers, and some grocery stores like Whole Foods carry them. You can go exotic, or you can go floral, or...

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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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