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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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A little story about the value of long-term health care provider relationships

Posted by on Feb 14, 2018 in caregivers, coping, featured, health care providers, relationships | 9 comments

Hi! It’s been a little while since I posted on my blog; the winter holidays kept me busy, I’ve traveled a lot since then, and I’m coping with a handful of acute health issues…it all sapped my blogging mojo! But I’m slowly easing back into it. Today, I’m thinking about how valuable it is to have kick-ass health care provider relationships. I want to talk about why it’s important, and how you can cultivate your own. A handful of symptoms means a handful of health care providers 18. That’s the number of health care appointments I’ve had so far this year. 18! The high number reflects a variety of things: an injury that’s required a few follow-ups and special procedures; maintenance appointments like a mammogram; check-ins with my pain psychologist; a trip to a compounding pharmacy; and physical therapy appointments to try to turn around my flare-up. It’s been overwhelming, and it’s SO HARD to get any work done when I’m constantly running around! Not to mention the hospital parking fees I’ve racked up. Harrumph. It’s enough to make a babe grumpy. Across those 18 appointments, I’ve seen 10 different health care providers. Some were brand-new to me, and WOW is it exhausting to have to explain your whole history to a new person. Especially when you’re asking them to diagnose a tricky issue. (Like one thing I’ve had for the past week: extreme sensitivity in all of my teeth. Weird!) But some of those health care providers have known me as long as 25 years. It’s those appointments that really help keep me sane during this crazy-making time. Long-term relationships matter I’ve talked before about ways to strengthen your relationships with doctors and other health care providers. I’m sure you can guess some of the reasons, but let’s review: You don’t have to re-tell your whole medical history at each visit They can spot patterns in your symptoms you may not see You cultivate a sense of trust…in each other Your medical records are all in one place (or at least focused in a couple places) When you’re a little late, or they need to reschedule, it’s easier to manage and you can cut each other a little slack You feel more comforted and safe with them These are just a few of the reasons why long-term health care provider relationships are so important. Here’s a quick story about another reason why: My pain is unexplainable and scary, but my HCPs help I mentioned that all of my teeth have been hurting. For a few days, I tried to be patient and hope it would improve, but I finally gave in on Sunday and went to immediate care....

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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 | 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...

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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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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.

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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!

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