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AWAP Wednesday: How Do You Handle Burnout?

Posted by on Mar 18, 2015 in ChronicBabe Basics, coping, featured, practicalities, ranting, self care | 22 comments

Today’s AWAP Wednesday post is all about burnout. You know… that feeling you get when you’re just EXHAUSTED from self care? When you’re tired of always being good about taking your meds properly, or eating on the right schedule, or exercising a certain amount or journaling, or… Our fellow ChronicBabe asks: “I have serious burnout. I know some of it is winter, but some of it is major symptom flare too. I’m totally feeling burnt out from healthy living and eating choices. I feel like I’ve had it up to my eyeballs with all that I’m supposed to be doing or not doing in order to keep myself healthy. I’m feeling discouraged, tired, and rebellious, and having a hard time getting myself back on track. And, no, record snow fall in Boston this year has NOT helped!!! What do you do when you hit burn out?” I know the feeling, babe. There are days when I just want to lie on the couch eating Cheetos and watching bad reality TV and just pretend I’m not sick. It’s a drag! Burnout happens. But: We’ve got to work around burnout and keep taking good care of ourselves. Watch today’s video for three tips on handling burnout: *AWAP = As Well As Possible Now it’s your turn: How do you handle times of burnout? Fill me in—I want to know! Join the conversation in the comments below, and share your experience. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and 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: As ChronicBabes, we have to constantly strive to care for ourselves. I’m continualy surprised when I have to explain to someone that I have a two-hour morning routine, because I have to take my meds on a strict schedule, do morning yoga to keep myself flexible, meditate, cook breakfast, etc. I don’t just roll out of bed, grab a bagel and coffee and run, like some folks can. And there are days I resent the hell outta people who CAN do that! There are days when I just want to say EFF THIS and give it all up. But… I know I’ll end up paying a price for it. I look for little cheats. So what do I do? I ask my health care providers: What can I do when I get burned out? What can I let slide, and what MUST I maintain? They can usually give me a couple little cheats I can manage that won’t throw me entirely off-track, but still help me feel like...

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AWAP Wednesday: 5 Ways to Respond to Someone Who Doesn’t Believe You’re Sick

Posted by on Mar 4, 2015 in activism, ChronicBabe Basics, coping, featured, ranting, relationships | 32 comments

I’ve talked about this before, and it seems I’ll never run out of reasons to talk about it again… because I keep running into naysayers and folks who don’t believe I can be sick. I’m flattered that they think I’m too dang cute to be a sicko, but also… super-irritated. Why can’t folks just take me at my word when I talk about invisible illness, as they would with so many other issues? “You can’t process these conversations as if you’re trying to change someone’s mind. You can only manage your own beliefs and behaviors. Once you’ve got that down, naysayers are much easier to talk to about illness.” More than 100 million people in the U.S. alone live with invisible illness, so it’s about time we got comfortable speaking up in conversations with naysayers. We don’t have to be jerks; in fact, I advocate the opposite! Today, I’ve gathered a bunch of approaches I use day to day to talk with folks who don’t believe I’m as sick as I say I am… Watch now for my top 5 tips: *AWAP = As Well As Possible Now it’s your turn: How do you respond to naysayers, doubters and jerks? Fill me in—I want to know! Join the conversation in the comments below, and share your experience. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and 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: Naysayers abound. There will always be people who question your experience – that’s just human nature. Unfortunately, those of us with invisible illness get this treatment a lot. (And you’re in good company; more than 100 million people in the U.S. alone live with invisible illness!) Many people simply can’t imagine our experience unless they’ve been in our shoes. It’s unfortunate, but if we dwell on it, it just brings us down… and who wants that? If there is anyone in your life who just won’t let up, who always questions your experience, then I encourage you to limit contact with them as much as possible. If you have someone who continually doubts you or calls into question your experience, you don’t need them. Boot em! Here are a few strategies I use for when people around me are being naysayers, or doubting me, or reminding me that some people think my illness isn’t real: The Quick Change This involves a quick change of subject. It requires that you do NOT try to change their minds. Instead, turn the tables. You might try answering a comment...

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AWAP Wednesday: Can I Get A Little Respect?

Posted by on Feb 4, 2015 in acceptance, activism, ChronicBabe Basics, featured, ranting | 58 comments

Instead of answering one of your AWAP* Wednesday questions today, I want to offer a little PSA and a call-to-action. It’s about the value and necessity of respect for others in our chronic illness community: *AWAP = As Well As Possible Now it’s your turn: Thanks for listening today, babes. Thanks for speaking up. If you’re with me on this, I would love to hear your thoughts in the comments below. Heck, even if you’re NOT with me, I would still love to hear your thoughts… we don’t have to always agree to respect each other. Next week, I’ll get back to answering AWAP Wednesday questions. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and 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: A funny thing happened to me recently. I met another woman with invisible chronic illness, one that—like fibromyalgia—is often called into question by non-sick folks and even medical professionals. We were having a pleasant conversation, and I was enjoying the fellowship of another ChronicBabe. Then she said something that shocked me: “I’m surprised you have fibromyalgia! I would never have guessed that from the way you look.” I almost snarfed my tea. After a moment, I regained my composure. “Well, isn’t that the reason we do the advocacy work we do? Because so many of us have invisible chronic illness and can’t get the respect we need and deserve?” But you don’t look sick. She said the one thing I would NEVER expect another person with invisible illness to say: But you don’t look sick. I haven’t been able to stop thinking about this interaction. It’s been my assumption for many years now that all of us within the invisible illness community understand and respect each other for sharing this same experience. Since I first got sick almost 20 years ago, I’ve heard variations on but you don’t look sick from tons of people—but almost never from another person with invisible illness. The idea that we have to look sick to be sick is wrong. This idea keeps thousands upon thousands of sick folk from getting the respect they need and deserve from friends, family, co-workers and others. Often, this idea keeps us from getting the medical care we need and deserve from otherwise well-meaning health care providers, who for whatever reason can’t discern or believe the intensity of our pain and other symptoms that don’t present visually. Respect each other. All of us within the invisible illness community—and there are over 100 million of...

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The Problem with Pain: People Are Afraid. (On Activist Fatigue, and Why We Must Keep Talking)

Posted by on Oct 16, 2014 in activism, featured, pain, ranting | 6 comments

It’s not often that I read an article that makes me burst into tears. And maybe it’s because I’ve been in constant, intense pain for the last few days, or because I’m hormonal, or perhaps I’m just being HYSTERICAL… but this piece in Vox about new research into objective pain testing using functional MRI (fMRI) made my eyes squirt. Raise your hand if you have chronic pain Ah, yes, so many of you. You’re in good company: The American Academy of Pain Medicine (AAPM) estimates that 100 million Americans, and approximately 1.5 billion people worldwide, live with chronic pain. So many of us have had to circle a little face in the traditional pain scale, a row of dorky little faces that propose to indicate how bad we’re feeling. If you’ve ever sat in a doctor’s office, sobbing, wracked with pain, and been handed a slip of paper with this pain scale, no one would blame you for crumpling it up and tossing it aside. Six little faces are not enough to help us indicate the extent of our pain, or the extent to which it robs us of normalcy. (If you haven’t seen the alternate pain scale at Hyperbole and a Half, stop reading this blog post now and take a peek.) So the idea of more objective testing—brain scans, science, techmology!—is very intriguing. Especially for women like moi (I mean, all women, and especially those of color), because as the Vox article reminds us, women are less likely to get pain treatment they need than men, and people of color receive less-effective treatment as well. But FEAR!!! The thing that made me cry as I read the Vox piece was the description of a pain doctor who is identified as a vocal opponent of the fMRI testing concept. He cites the possibility that an inconclusive or negative test could be used against a patient who could be feeling pain that isn’t picked up on the scan. And while I agree, that would suck, it’s that kind of fear that holds us back from progress in the pain research and pain management fields. Why focus on a potential negative outcome, when we could focus on the potential massive positive outcome? Don’t get me started on pain medication I lost track long ago of how many conversations (sometimes arguments) I’ve had with folks about medication for pain management. People without chronic pain are the biggest culprits of myth perpetuation, in my experience, proclaiming that all pain medications are addictive and that we should ban them. (Yes! I’ve heard this many times in conversations, even with friends.) It’s true, as Vox points out (as does AAPM), that prescription pain medications are responsible for many deaths in this...

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AWAP Wednesday: Don’t Fall Into the Comparison Trap!

Posted by on Oct 15, 2014 in featured, ranting, relationships | 19 comments

Today’s AWAP Wednesday video comes from a fellow ChronicBabe, who asks: “How do you deal with non-chronically ill people who are ill? Often, my friends complain of fatigue and feeling run down from colds etc, and I find it really difficult not to compare their ‘illnesses’ to my every day life and point it out (sometimes insensitively) that they are so lucky not to feel like that all the time, or that they are well enough to have a job which is why they are tired, when I’m not. I know their pain and troubles are completely legitimate, it’s just really hard to remember when confined to my flat or bed.” As much as I can relate to this woman’s question, I’ve gotta answer her with some tough love. I think some of you know what’s coming… Now it’s your turn: How have you dealt with the urge to compare yourself with others? Have you adapted your behavior? I’d love it if you shared your story in the comments below this video’s post. We have AWESOME conversations every day at the site and I would LOVE for you to be part of the community! Did you like this video? Please “like” it on YouTube or Facebook and share it with your friends through social media. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than five hours of guidance, advice, and 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! *AWAP = As Well As Possible A (rough) transcript: Question from a fellow ChronicBabe: I hope you are AWAP. I have a question for your videos – how do you deal with non-chronically ill people who are ill. Often my friends complain of fatigue and feeling run down from colds etc, and I find it really difficult not to compare their ‘illnesses’ to my every day life and point it out (sometimes insensitively) that they are so lucky not to feel like that all the time, or that they are well enough to have a job which is why they are tired, when I’m not. I know their pain and troubles are completely legitimate, it’s just really hard to remember when confined to my flat or bed. My (tough love) response: Hey babe, this is a question so many of us can relate to. I’ve definitely had moments of frustration when a friend complains of some kind of pain, thinking in my head: you’re lucky that’s all you have! Or: try feeling like that for 10 years! Everyone experiences some level of suffering But let’s get real: every being experiences suffering....

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PSA: Fibromyalgia is kicking my ass today.

Posted by on Jan 29, 2014 in coping, featured, ranting | 60 comments

I try really hard not to bitch and moan too much on the social medias about fibromyalgia. But the past few days have been so tough – on everyone, I know, and for this fibrobabe, especially bad. So I’m running a little PSA: What does it feel like to have fibromyalgia? This morning it took me almost two hours to get out of bed (I usually get up within a few minutes of my alarm going off) and I’m massively symptomatic. Pain, fatigue, weird fogginess in my head, my ears keep popping, headache, backache, feet sore, my eyes feel weird, fingers are sore, everything’s stiff, upset tummy…I could go on and on. I’m going to do my best to weather this day. I have a client meeting, and a client deadline, and I’m out of clean undies so laundry has to get done, and groceries purchased. This day has to get going whether I’m ready for it or not. I live alone and while I have friends who can sometimes help, today’s a weekday after most folks have missed two days of work (darn Polar Vortex!) so everyone’s out working or doing their thing. It’s just me today. What’s a fibro-flare day like? Odds are, it’s gonna suck. It’s terribly difficult to attend client meetings when I’m flaring up (even one as casual as the one I’m headed to shortly) because it’s difficult to concentrate. I want to bring my A game so I’ll force myself to be vibrant and energized, but I’ll pay for it afterward with a slump. I’ll run a couple errands if I can but I may have to skip them. Then I’ll need to gather my energy to work on the project that has a deadline this afternoon, downing black tea and eating a protein-rich lunch to power me through it. And then I’ll likely slump again. Finally, laundry needs to get done, so I’ll pick the most vital items and head down three flights to the basement machines. I’ll trek those stairs a few times to finish the chore, and because I’m in a lot of pain I won’t wash everything but instead carry the lightest, most essential things, so I’ll need to do more laundry later this week. I’ll go to bed early and hope I get some solid rest so tomorrow’s not the same, because I have two client meetings tomorrow and another deadline to tackle. And I will try extra-hard not to feel sorry for myself – a trap that I sometimes fall into, even with more than 15 years’ experience of life with this damn disease. Why am I sharing this today? Occasionally, I post things like this because so many...

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