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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...

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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 | 20 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...

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Sometimes, you have to ask yourself to dance (a few words on the suckiness of self-judgment)

Posted by on Nov 15, 2017 in acceptance, coping, resilience | 15 comments

It’s mid-afternoon, and I’ve got a roaring headache. My phone just crashed in the middle of an important call. My back is sore, and I’ve still got tons of work to do—but I can tell my body needs a nap. I crawl into bed, setting the alarm for an hour later…and lie there fitfully, unable to drift off to sleep. Eventually, I get up and grab a snack and a glass of water and sit down again at my desk. Now I’m even further behind than I was before, and I still feel unrested. I’m probably going to have to work well into the evening.   Or: I can ask myself to dance.   No judgment See, a friend of mine helps run a women’s dance group here in chicago called DDPP: Dance Dance Party Party. The group has three rules: no boys, no booze, no judgment. Twice a week, folks meet and take turns DJing, dancing together for an hour. You can dance however you want, and you can opt out of any song. It’s freakin’ fantastic. That part about “no judgment” is the thing that’s getting me on the dance floor tonight. Those two little words are a reminder to me that no matter how I show up, no one there is going to judge me. That’s especially important tonight, because I’m confident I’ll have to sit out a bunch of songs, or at least dance really slowly, perhaps just swaying or bobbing my head to the beat.   No self-judgment I have DDPP in my calendar as a repeating appointment, every Wednesday night and Sunday afternoon, but sometimes I don’t go because I’m tired or sore and I won’t be able to dance the way I want to. Or the way I should be able to dance. Hear that? That is the sound of nasty self-judgment, and sometimes it creeps into my head and stops me in my tracks. I used to dance every weekend, hitting the club scene in Chicago and staying out til all hours. I prided myself on my ability to dance well past midnight, sometimes multiple nights a week. Since I got sick more than 20 years ago, I’ve had a really hard time accepting the loss of dance in my life. It’s not that I can’t dance at all—I just can’t dance to more than a couple songs at a time, or I can’t do all the moves I want to do. But that self-judgment is so limiting! It has kept me from pursuing a thing that brings me joy.   Tonight, I’m gonna ask myself to dance Yes, I’ve got work to do…but I know the quality of my work...

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Self-love: Jenni chats with Mary from Uncustomary about a powerful practice

Posted by on Nov 7, 2017 in acceptance, guest author, inspiration, self care | 0 comments

A few months ago, I stumbled across an Instagram account that was just irresistible. Mary is a strong, creative, energetic, authentic woman talking about the benefits (and challenges) of practicing self-love, and I adore her style. She offers resources at her website, Uncustomary, including blog posts, a podcast, a fun (and affordable!) membership service, a book, much more. We had a couple conversations and now, OMGOSH are we friends. I’ve written before about how we can rock our look as ChronicBabes; this babe rocks it Every. Dang. Day. Today, she’s hosting me over at her Uncustomary podcast, and I’m hosting another conversation here, too—because we both believe women with chronic illness deserve to love themselves deeply, no matter how sick they are. And have fun while they’re at it! Jenni: You’re all about the self-love and its impact on leading a happy life. What brought you to this work? Mary: The short answer is knowing what it’s like to be on the complete opposite end of the spectrum! I started developing multiple mental illnesses at just eight years old, and it seriously impacted my adolescence in terms of self-esteem and overall happiness. Feeling like I wasn’t in control of my body made me hate my body and myself which spiraled deeper and deeper. I finally got to a point where my symptoms were controlling my life and I knew if I didn’t at least try to do something about it, I was going to end up in a place I didn’t want to be. So I started cognitive behavioral therapy (CBT), which is one of the huge stepping stones I pivoted on and feel changed my life. I basically learned how to deal with some of the most obtrusive symptoms in my life, and by doing that I felt this mental space open up in my mind. I finally wasn’t totally consumed by just getting through the day; going from one symptom to the next… I had room to wiggle around! I could even get creative! I dove back into crafty stuff I had missed from my childhood and started documenting it. From there emerged a blog, and that blog chronicled the progress of the journey of my self-love exploration and discovery that is ever-growing. Essentially, I realized that if someone who had five mental illnesses, a palm-full of pills to take just to function, and a panic attack metaphorically scheduled on her Google Calendar could start loving the body that had gained a hundred pounds in the process (from medication side effects) and herself, that it was possible for other people in better and even worse situations. I wanted to provide my perspective in hopes it would be useful...

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A brief list of the ways in which I’m flared up a.k.a. fibromyalgia is a beast but I’m still trying to be #AWAPwednesday

Posted by on May 3, 2017 in acceptance, featured, pain, resilience | 21 comments

Babes, you know my usual way is to share lots of uplifting videos and posts, but today it’s less about uplifting and more about realism and a reminder that you are worth taking care of. Some days, it’s enough to get on the computer for a bit and clear some emails. Today, for instance. That’s about all I can manage, work-wise. And this here blog post. That’s what AWAP (As Well As Possible) looks like for me today. I’ve lived with fibromyalgia for almost 20 years now, and I’m amazed at how disabling it can be. After many years of trial and error, I feel like I have it pretty well managed and I’m mostly able to work normal hours and get my business done. But on days like today, I am humbled by this ridiculous condition. I’m flared to the max; it’s like every system in my body is inflamed. Here is a brief list of the ways in which I’m flared up by the fibro-beast today, starting from the feet up: My right foot is sore in a muscular pain way, making it painful to walk. I think it’s because I did some machine sewing last weekend, using the pedal to run the machine as usual. How dare I make crafts! A bruise I got from my shoe being too tight (!!!) has spread over most of my ankle. I’m in dire need of a pedicure. (Oh wait, that’s not fibro’s fault.) My knees are sore, and I have a tingling sensation in my right thigh—and not in the fun way. My lower back is stiff and sore, and no matter how many yoga poses I try, stretches I do, or heat I apply, I can’t get it to calm down. My hips are stiff and crackly. I tried doing some belly dance moves this morning to open them up, but no dice. (Although I think I looked pretty cute while doing them!) My skin is itchy all over. There’s no evidence of a rash, and I’ve applied anti-itch cream a bunch of places, but it isn’t making a difference. In any case, a full-body dip in calamine lotion is just not an option today. My shoulders and neck are stiff and sore, and that’s translating down into my hands, which are also very sore and unhappy that I’m using them on a keyboard. Too bad, hands! I have an area of irritation on my stomach that has no visible explanation, but is warm to the touch, and not happy that I’m wearing pants with a waistband. I’m dreaming of a mumu right now. Sounds are super loud to me today. My husband sneezed earlier and it...

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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...

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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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