Be a Babe: Subscribe & get a free Beginner's Toolkit + more. Smooches!

How to talk to people about being in a huge flare-up

Posted by on Apr 18, 2018 in acceptance, ChronicBabe Basics, coping, featured, friends and family, relationships, resilience | 2 comments

It’s not easy to talk to folks about being in a flare-up: being in constant pain, experiencing unyielding fatigue, spending hours on the toilet every day, having daily anxiety attacks. That’s been my life since mid-January, and it’s only just now starting to ease up. So I’ve had a good bit of practice when it comes to talking to people about being in a mysterious months-long flare-up. What’s a flare-up like for me? A fibromyalgia flare-up for me has all of the above symptoms and more. Sometimes my skin itches all over; sometimes I get rashes. A couple months ago, all of my teeth hurt. I sometimes have a ringing in my ears and a feeling of vertigo. Some days, I have ALL of these, all at once. I’m a regular party over here, right?! It’s hard to remain upbeat As you move through life in flare-up mode, it can be hard to keep your mood positive, even for part of the day. Those of us who’ve been sick a long time may know how to muscle through some of it, and not really show how bad we’re feeling, because we have kids, or work, or commitments that can’t be ignored. So we’re often quietly suffering and not speaking about it. (Those who know us very well might still recognize the struggle in our faces.) Talking endlessly about how bad we feel is NOT a good way to boost our mood. While it can feel good sometimes to vent to a friend or your therapist, doing it many times, day after day, is not something I recommend. You’ll get tired of hearing yourself complain, and by repeating the mantra of suffering over and over, you’re drilling in the message that you’re nothing but the suffering. After some time, it can begin to feel like you’ll never come out of it—and once you hit that stage, it is indeed hard to climb out of the hole emotionally. So I recommend that you choose a couple people close to you to confide in, and then pledge to yourself that you will try not to focus on repeating your list of ailments day in and day out. Fill in that space with reminders to yourself of the things that ARE going right. With the people you feel comfortable talking to about all the details, go ahead and vent—but also do two things for yourself and for them. First, put some kind of time constraint on the venting. You get to do it once a day, for example, or a single venting conversation can’t be longer than 15 minutes long. It’s healthy to get things off your chest, but not healthy to wallow…get...

Read More

What’s the secret to being as well as possible (AWAP) in spite of chronic pain and illness? Start with: Acceptance

Posted by on Feb 21, 2018 in acceptance, ChronicBabe Basics, coping, featured, practicalities, resilience | 18 comments

Sometimes, we need to come back to a foundational practice, one which I’ve learned is just that—a daily practice. I’m talking about acceptance, one of the most powerful tools we ChronicBabes have for staying AWAP.   When someone asks for my secret to thriving, I usually respond with “acceptance” I was talking to a loved one earlier today, and he thoughtfully asked if I was out of my flare-up yet. The way he put it, actually, was “are you feeling as well as possible?” “Yes,” I replied. “So you’re not having as much pain as a few days ago, I take it?” “Well, actually I have more. But I’m still AWAP,” I said. A brief moment of quiet passed between us. “But you were traveling last week—didn’t the pain keep you from going?” he asked. “No, I mean…the way I figure it, I’m either going to hurt at home alone, or hurt in a fun vacation house with 10 friends, so I still went on the trip.” Another moment of quiet. “If you figure out the secret to being AWAP even when you’re hurting so much, be sure to share it,” he asked. “It’s acceptance, all the way.” But what is acceptance? Acceptance is all about getting real with all the things that ail you, and looking them right in the eye and saying “I see you, ailments. I know you are not going away, or if you are, I have no control over when that will happen… but I’m not going to let you stop me.” It’s about saying the serenity prayer on the regular: “God (or Goddess, or Universe, or…), grant me the serenity to accept the things I cannot change, courage to changes the things I can, and wisdom to know the difference.” Acceptance is not letting yourself Google the same symptoms over and over and over post-diagnosis, hoping to find a new “fix” and driving yourself crazy. The practice includes asking for help when you need it, even if it’s more help than usual, and not apologizing for needing help. Acceptance is allowing yourself time to grieve because this shit is super hard. Practicing acceptance means doing all your regular check-ups even when your calendar is crowded with other health care appointments, because you know neglecting things like your teeth or your boobies could mean developing EVEN MORE health issues and who needs that? Acceptance is not trying to recreate the wheel every day. Instead, it’s creating routines that take into account all your needs, so you can do all that’s possible to make the most of your day each day even if you’re hurting or flaring up. It’s knowing that even if you feel...

Read More

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....

Read More

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 | 18 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...

Read More

5 Ways to Avoid Overwhelm When You Have Chronic Illness #AWAPwednesday

Posted by on Feb 15, 2017 in acceptance, ChronicBabe Basics, coping, featured, practicalities, Work | 12 comments

Okay, I’ve got to remember to go to the dry cleaners, and call my health insurance about the EOB, and make sure I take my new vitamins this afternoon, and paint my nails for a photo shoot, and, and write a handful of emails, and… whew! I am overwhelmed! So it really resonated when one of our fellow #ChronicBabes emailed me to ask about overwhelm. (Did you know you can request a video on specific topics or questions around chronic illness life?) It’s easy to get overwhelmed when we have chronic illness, because there are so many things to juggle—and the world is just overwhelming all on its own! I hope you find some of my tips helpful.     *AWAP = As Well As Possible Now it’s your turn: What kinds of things help you get calm and tackle overwhelm? 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: 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? One of our fellow #ChronicBabes wrote me recently with a question about overwhelm. She’s been feeling more and more of it since she got sick, and she wondered if I sometimes got overwhelmed, too—and what I do about it. Girl, you KNOW I get overwhelmed sometimes! Not only do I have a handful of chronic illnesses to manage, but I also run my own business teaching women how to live full lives in spite of being sick chicks, and I’m finishing writing my first book, and I have a couple of time-consuming hobbies, and friendships and a husband to maintain, and… I am SO with you on the overwhelm thing. I have a few tricks up my sleeve when it comes to handling overwhelm. Here we go: Make a list. I know, it sounds obvious, but seriously: Make a list. Sometimes I use the reminders app that’s built into Apple computer products, so my lists are synced across all my devices. Sometimes I use the Evernote app if I want to make a list of things I share with my husband or a friend, so we...

Read More

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...

Read More

WE’RE NOT DOCS!

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

Every Babe needs to find her own path for achieving optimal wellness. While we do tons to help guide you, it’s up to each of you to make well-informed choices and live with the consequences. ChronicBabe.com assumes no liability or responsibility for stuff that goes wrong.

Links to other web sites are provided as a service, but do not constitute endorsement of those sites by ChronicBabe.com; we are not responsible for their content. We do our best to find the most rockin’ resources but hey, we’re human.

Take what you like from this space, and leave the rest. Use what you learn to make your life better. Be responsible for your own choices. And please don’t sue us. XO!

As Seen In