Cranky Fibro Girl

Harnessing the healing power of snark

A Little Bit Of Soothing Wednesdays: “Take That Nap” with Zen At Play

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Today, in this week’s installment of my series dedicated to sharing some things I’ve found that help me to feel a little more comfortable when I”m having a Terrible, Horrible, Very Bad, No Good Day, I am REALLY excited to be hosting Lisa Baldwin of Zen At Play.

She has written a delightful little e-book called “Take That Nap” which she describes as “a (short) guide to getting good stuff done (gently)”, and she has kindly agreed to visit us here today at Cranky Fibro Girl to tell us a little more about the book and what she does in her work. Welcome, Lisa!

1. First of all, I need to mention JUST HOW MUCH I have needed this e-book, and how it appeared at just the right time for me. And it has a very special place right next to my desk so I see it all the time and remember to use the tools it contains.So I was wondering, was the book something that developed over time, or did it just appear in a flash one day.  For example, had you been using these tools with yourself and/or others for a while, and then you wrote “Take That Nap” as a way to collect them all in one place?

The writing of the book itself was very fast once I recognised what it needed to be, but it had been a work in progress long before I showed up to write it.

There’s a chapter about practicing self-kindness when things go very wrong, and that one was a surprise. I was in Burma by accident, completely unprepared, hovering on the brink of disaster with nothing but my lack of planning to blame. It was the perfect opportunity to beat myself up, yet I was delighted to notice that I wasn’t giving myself a hard time about it at all. Kindness had become my default response. Huge! So the chapter was right there in the moment – I wrote about it as I experienced it – and in that respect it arrived in a flash, but it also came from the years I’d spent being horribly unkind to myself.

So you could say that the book came in a flash, and was also a long time coming

2.I love that you close every chapter with a couple of “curly questions”. Could you tell us a little more about them? I especially love them because they are so much gentler than the kind of questions or exercises you find in “personal growth” or “self-help” books, that are always pushing you to “Take action now!”, and “Go! Do! Reach farther and harder! Push yourself out of your comfort zone!” Those just feel so violent to me, whereas curly questions feel gentle and soothing and supportive.

Violent self-help? Blech. Yes. Some people respond well to push-shove motivation techniques. Others don’t respond well to that kind of thing at all, but are convinced that’s because they’re faulty in some way.

Take That Nap begins and ends with the idea that you are not your enemy, and you don’t need fixing.  Sometimes we pretend we’re asking questions, but they’re really just “kick me” signs in disguise – variations of “why do I suck so much?” Instead, we have the option to get curious, practice listening and trust our own judgment.  Helpful questions are the ones that spark curiosity and open up possibilities – if you feel attacked by your own line of questioning, it’s time to choose a new angle.

3. The theme of gentleness and kindness toward yourself runs throughout the book, and I was especially caught by how you applied it to the idea of having to choose where you are going to focus in any given moment, acknowledging that there are limitations that we must work within, and that we will feel sadness at times because there are some things we might just not get to in this lifetime. It was such a relief to read that, actually, after constantly being bombarded by books, magazines, info products and other things that constantly yell about how we can “Have it all!”, and “Have it all RIGHT NOW!”. And that if we don’t want it all, then there is something wrong with us.  Could you talk a bit more about this idea of how this idea of limits and containers can actually be something that be helpful, and make us feel better, and help us get to the things we actually want to do?

“All” is a big thing to have or want, yes? Too big.

Containment is a way to create a sense of safety within the impossible vastness of possibility. That sense of safety can invite innovation and imagination – this is how two sticks become fire or percussion.

When there are too many options, too much open-endedness, we end up feeling overwhelmed and scattered. We’re never doing enough, because there is always more that could be done. Right-sized containers give us something to work within, by choice or necessity, and that can lessen the pressure if we let it. If I can accept that I only have a certain amount of time and energy available, then I can lean in and work with it instead of struggling against it. That’s an act of self-care right there.

4. Could you give us an example or two of how you use some of your own tools? And, perhaps even more importantly, how you REMEMBER to use them? I tend to have a lot of “amnesia” when it comes to remembering how to take care of myself.

I used all of my tools to write Take That Nap. It wouldn’t exist otherwise. The chapters were all written in 45-minute bursts, index cards helped me keep tabs on the idea fairies, I worked in the mornings so I could nap or do nothing when the afternoon heat kicked in, and I contained my internet time.

Do I always remember to do that stuff? Nope. I forget regularly. The practice is in remembering sooner than I did last time, and in being curious about the places where self-care gives way. Each time we remember again, we’re loosening our grip on our less helpful ways of doing. That’s progress, and that’s useful.

There are practical ways to remember – that’s what Post-It notes are for. At the same time, there is good juice in noticing where we create suffering for ourselves, and then adjusting accordingly, again and again. You are not failing at self-care if you forget sometimes. Notice, adjust, notice again. Gently does it

5. Thank you so much for visiting with me and Cranky Fibro Girl today. And finally, can I just say that I absolutely LOVE your bio: “Prolific ponderer. Kindness Enthusiast. Playful Budhhist with a passport and a pencil”.  Can you give us a hint of what you might be “prolifically pondering”, and where your passport and your pencil might be taking you next?

I ponder all kinds of things, all of the time. It’s really quite ridiculous. Right now, my pencil and my ponderings have me gathering notes for more short, gentle books. I’m curious to see which one will be the first to show up as finished.

As for me and my passport, well, we’re about to get busy. Take That Nap was launched from Burma, and it’s quite possible that I’ll be in India when I release my next collection of ponderings out into the world. That would be wonderful.

Lisa Baldwin. Prolific ponderer. Hopeful adventurer. Writer of short things. In love with kindness and the creative impulse. A playful Buddhist with a passport and a pencil. Kiwi, yet neither bird nor fruit. Hello!

The One Where Cranky Fibro Girl Embarrasses Her Mother

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Because the Universe loves me, I am always in The Right Place at The Right Time to hear conversations like the one I overheard the other day, where some wives were discussing banking their husband’s sperm so that, if something happened to their spouse, the wife could still bear his children.

I was trying to wrap my brain around that idea, because that truly is something you don’t hear everyday, but then I heard this:

“Well, yeah, you’re my husband. If you were brain dead, OF COURSE I’d want your nuts.”

Special Guest Star Friday: Jennette Fulda, Author Of Chocolate & Vicodin

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A few weeks ago I was contacted by the author Jennette Fulda, who asked if I would be interested in receiving a copy of her new book to read and review.

I replied, “Let me think about it YESPLEASESENDITRIGHTNOW!”

Chocolate & Vicodin is a story that so many of us here, unfortunately, are all too familiar with-mysterious chronic pain that shows up, sets up camp, and never ever goes away. In Jennette’s case, it is a headache that randomly showed up about 3 years ago without any apparent cause, resisted any improvement despite Fulda’s NUMEROUS attempts at various treatments, and has yet to go away.

One of my favorite parts of the book is the fact that she starts every chapter with some of the emails sent in by her blog readers, suggesting possible causes (such as a congested chakra, or a spirit hanging around her head in the form of a halo), and treatments (cheer up!, get your hair analyzed for the presence of toxins!) that they felt she should consider. (Because being told how to manage your health by people who have ABSOLUTELY NO IDEA what they are talking about is oh so helpful.)

Jennette has kindly agreed to visit us here at Cranky Fibro Girl today to discuss her book, as well as some of the situations she’s faced over the past few years as someone who lives with chronic pain.

Hi, Jennette, and welcome! We’re so glad to have you here. So let’s get started.

1. When I think about dealing with chronic pain and chronic illness, the first thing that comes to mind for me is the idea of QUESTIONS. I think that in the past 3 years, thanks to umpteen million doctor visits, as well as trying out all kinds of different therapies and treatments, I have been asked more questions than I have in the 35 years before I got sick.

So I was just wondering-are you tired of all the questions too? Is there a particular question that you wish people would STOP ASKING YOU, ALREADY?! (Mine is, when visiting my fibro doctor and discussing any current flare-ups is, “So, what do you think might have caused it?” I DON’T KNOW! That’s why I’m coming to see you!)

Then, on the other hand, is there a question you wish people would ask you? Or maybe some kind of prepared statement you could just hand out on a little card so you didn’t have to re-explain everything to every person you meet?

I definitely wish I had a little card explaining my condition. I might just do that, now that you’ve suggested it 🙂 The problem with having a headache that never goes away (besides the headache itself, obviously) is that it’s not a well-known phenomenon. I have to explain my symptoms to everyone who asks about it. I wish I could just say I have diabetes or multiple sclerosis or some other well-known disease. Most people understand what those conditions entail and what basic treatment options there are. But because almost everyone has had a headache at one time or another, everyone has advice for me which isn’t really on par with the seriousness and inscrutability of my illness.

The one question I hate the most is when someone asks me, “How have your headaches been?” Notice the plural: headaches. I don’t have headaches! I have one, singular headache that has never gone away for three years. When someone uses the plural, especially a doctor, it makes me think they don’t really understand my condition.

2. Did you have someone to go to all your doctors’ appointments with you, or were you all by yourself. If so, how did you manage being the patient as well as the patient advocate? Is there any advice you have to give to others who might find themselves in a similar situation?

I went to most of the appointments by myself. Driving usually aggravates my pain, so when I was travelling several hours both ways to the headache clinic, my mother came with me a few times so we could split the drive. It definitely would have helped to have a patient advocate along with me, but I did ok by myself, probably because I’m a highly organized person. I would write out questions in advance to make sure I covered everything I wanted to in my appointments.

As I saw more doctors, I started to see them less as all-knowing gods and more like partners in the project of getting me better health. When you see them more as equals it’s easier to question them or move on to another doctor if your needs aren’t being met. Just remember you have the power. The easiest way to give up power is to believe you don’t have any.

3.  Did you have any kind of guidelines or rules in your own mind that helped you decide whether or not to try a treatment? What did it take for you to get to the “pissed off factor” (sorry if that’s the wrong term-I don’t have your book in front of me) with any given treatment?

I didn’t have any specific guidelines, but if a treatment sounded really uncomfortable or out in Weirdsville, I wouldn’t do it. I did experiment with many treatments that I didn’t have much faith in and never would have tried if I weren’t ill, like acupuncture, chiropractics, and craniosacral massage. So I did keep an open mind, and an open wallet. The biggest factor in abandoning treatments ended up being expense. I did one round of Botox after the book and would have liked to do a couple more since you can see improved results after several treatments, but I couldn’t afford $1000 every 3 months.

4. I’ve learned that part of dealing with my fibromyalgia is having to educate the people around me by letting them know specifically what to or not to say, how I need them to say it to me, how to ask for help, and how to let them know exactly the form in which I need them to give me said help. Have you had to do anything similar with the people around you?

Yeah, to an extent, but I think I’m still learning how to do that without pissing people off. I’ve tried to let my blog readers know I don’t want their advice, as well intentioned as it is, without sounding like an ungrateful wretch. I’m not sure how successful I’ve been at that. It’s hard to get people to understand how annoying it is when someone presumes to know your body better than you do and insists on telling you how to run your life because they think you’re doing it wrong. Hopefully the book will give people a better sense of how to interact with someone with a chronic illness.

5. Also speaking from my own personal experience, I know that I have tried very hard to find some kind of meaning or purpose in having to live with chronic pain and illness. Sometimes I can, and then other times it just seems to be more like, “Well, I have fibromyalgia because I have fibromyalgia.” Have you been able to find any kind of meaning or purpose in your experience?

That’s basically why I wrote the book. It gave meaning to an otherwise meaningless experience. Writing about everything I’d gone through made me understand it better. After I wrote the book, I realized the major arc of the story is learning to stop waiting for your old life to return and to accept the new life that you have. Hopefully by sharing my own experiences I can help others in similar situations.

I think purpose is a relative thing anyway. If you zoom out of your life and try to imagine how gigantic and old the universe is, you may realize that anything that happens on this planet is a cosmic blip that’s completely inconsequential in the great scheme of things. But then you can zoom back in again to just your life, your family and you friends and realize that the only thing that matters is the time we have here. You might be able to find your purpose somewhere in between those two extremes.

Jennette Fulda went to bed on February 17, 2008, with a headache, and more than three years later, it still hasn’t gone away. Yes, she’s tried everything: intravenous drugs, chiropractic adjustments, acupuncture, subliminal messaging, marijuana (for medical purposes only), heavy drinking (which just made it hurt more), and lots and lots of chocolate. A pint of ice cream makes her feel better, but her insurance doesn’t cover mint chocolate chip.

In this painfully honest, smart, and funny memoir, the popular PastaQueen.com blogger who chronicled her nearly two hundred pound weight loss in Half-Assed shares her incredible journey to find relief from a chronic headache. As she visits countless doctors, indulges all manner of unsolicited advice from the Internet, and investigates every possible cause, from a brain tumor to a dead twin living in her brain, Jennette considers what it means to suffer, how to live with pain, and why the best treatment might be the simplest: laughter.

A-Little-Bit-Of-Soothing-Wednesdays: Shannon Wilkinson And Change Without Augers (Or Sledgehammers, Or Never-Ending Naval Gazing, Or-Well, You Get The Picture)

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Today, in the second installment of my series dedicated to sharing some things I’ve found that help me to feel a little more comfortable when I”m having a Terrible, Horrible, Very Bad, No Good Day, I am REALLY excited to be hosting Shannon Wilkinson of “Your Life-Inspired”.

I have known Shannon online for a couple of years now, but last month when I was in Portland I got to meet her in person, and I was not at all surprised to find out that she is even cooler in person than she is online.

So without further ado, let me step back and let Shannon take the floor.

Welcome, Shannon! I’m so grateful that you were willing to take the time to come and visit with us today.

So, Shannon:

1. One of the services you offer your clients is something called NLP. Having worked with a coach for many years, (and actually being a secret Certified Life Coach myself), I have heard a lot about NLP, but I’ve never really felt like I had a clear idea of exactly what it is. Could you tell us more about it?

I’m not surprised that you don’t have a clearer understanding about it, it can be hard for me to define succinctly, and I’m a certified NLP Trainer! I think it’s especially confusing because while NLP is really about the study of excellence and subjective experience, most people think of it as the many techniques and patterns that have come out of the modeling process.

Oh, and the names. The names are just horrible, starting with Neuro-Linguistic Programming! It was coined in the 1970’s when computers were really starting to excite people. The developers thought of NLP as a User’s Guide for the software of your mind and behavior. But when you break down the name, it’s about how thought (“neuro”) and language (“linguistic”) affect one another and behaviors (“programming”).

So, what is it? NLP is the study of how you experience the world and do things, from how you do the things you do really well naturally (learn languages, empathize with others) to how you do the things you’d rather not do (get angry, bite your nails).

There’s a systematic process for figuring out how someone does something really well, breaking it down into steps and recreating the results. And to know that you really have it figured out, teaching the process to someone else. This is how I learned to break a board after five minutes of training as opposed to the years it might take in traditional martial arts training. And could then teach someone else to break a board in the same way.

The other part of NLP, and probably more familiar, is the many techniques and processes that came out of modeling people. The first three people modeled by the founders of NLP were outstanding therapists: Virginia Satir, Fritz Perls and Milton Erickson. So lots of techniques that these therapists used were identified, modeled and taught to others.

There’s a model of asking questions that makes things more specific and precise, there’s a model that makes things more broad and abstract. There are techniques to change your perceptions and feelings about things, including a phobia cure, allergy relief and creativity. There are questions to understand how you think the way you do, and what that means. These are what most people think of when they think of NLP.

2. Wow. That’s really interesting. So could you tell us how you use NLP to help people work through their hard/stuck/painful stuff? What are some of the results that your clients have experienced?

The spirit of NLP infuses everything I do with clients, from fear taming, where I help a client transform fears that are keeping them stuck, to genius discovery, where we figure out someone’s unique superpowers and gifts and apply them in other parts of their life.

Essentially I ask questions, notice patterns and help unleash my client’s natural brilliance in making changes that let them feel good and do what they want to do. The whole thing feels like a conversation to the client, yet I’m using language specifically to engage a person’s unconscious mind and shift the way they they’ve been thinking, from what’s keeping them stuck, to a new way of thinking that gets them what they want.

The most common result is a sense of ease around something that was previously fraught with angst or other troubling emotions. Lots of clients have come back to me in disbelief and said, “it’s so weird, it’s just not an issue anymore.”

The other thing that’s pretty common, is for clients to come with one issue, and they not only get the changes they wanted there, but other problems shift magically as well.

3.  One of my favorite things that you’ve done is the “Boring Change: No Augers Required” kit, especially since it fits in so perfectly with the “soothing” theme of this series. Can you tell us a little bit about how this product is different than some of the other self-help/personal growth products out there?

The Boring Change kit is the ultimate in stress-free change. There’s lots of information in the kit, but basically the right way to do it is to be guided through the five-minute process and then forget about it. There are no SMART goals to set, no forced accountability, no rehashing the past to get to the root cause of why you do what you don’t want to do, simply a short process that gets your unconscious mind on board with what your conscious mind wants. The change happens automagically. What could be a more soothing?

The other thing that’s great about Boring Change is that you can use it over and over for a wide range of issues. People have had success using it for procrastination, money issues, weight loss, jet lag, public speaking, nail biting, compulsive email checking, and relationship problems. I’ve even used it for acclimating more easily to extreme temperatures while mountain climbing. If you can name your issue, you can make a difference with Boring Change. It also can be really supportive when you’re trying to make big purposeful changes in your life.

4.   And of course, no interview with you could be complete without mentioning the Hypnosis Recordings + Lotion Potion Alchemy set that you collaborated on with Heidi and The Aardvark, who were featured in the inaugural post of this series. This is one of best things I have ever bought to help me take care of myself, and I have received no end of soothing and comfort from it. Can you tell us a little bit about how your collaboration came about, and what kind of results you hope that people get from using the recording and lotions together?

I’m so happy to hear that it’s been helpful to you! What a dream project it was working with Heidi and The Aardvark.

It happened because I’d been wanting to make some hypnosis recordings, but wasn’t sure what would be most useful. Then I bought the Aardvark Essentials Potion Sampler set and was wowed by the different potions. It occurred to me that it would create some amazing synergy to have a recording guide you in accessing the qualities evoked by each potion. I emailed Heidi, we chatted and the Audio + Potion Alchemy was born. It got really fun when we enlisted the help of readers to vote for the potions that would get a hypnosis recording.

The results are unique to each potion + recording combination:

  • Night Queen is to develop your confident passion
  • Losing It helps you calm the heck down in moments of overwhelm and fear
  • Sassypants helps you live your truth, without worrying about the world’s approval

Heidi’s potions are wonderful on their own, and my hypnosis recordings can really help you make changes in how you feel, but when you put them together, and get the primal sense of smell working together with your unconscious mind? Wow. Powerful good stuff. They get different parts of your brain working together to create an experience that’s hard to describe.

5. Thank you so much for visiting with me and Cranky Fibro Girl today! Before we go, is there anything coming up in the near future, any project you’re working on that you want mention?

It’s such a pleasure to be here Jenny! Thanks for having me, and for asking about my future stuff.

I’m crazy excited about a new coaching program called You Creating You. It brings together all the best stuff I use with my clients to help them bring their (secret) dreams into reality. You know, the stuff that you don’t hardly even want to admit to yourself, the things that you dismiss out of hand, because it’s not possible for you? Yeah, that stuff!

It’s happening in conjunction with the creation of a new online home for me. If you or your readers want to know when it’s all ready, get on the list (http://www.shannonwilkinson.com/newsletter/) and you’ll be one of the first to know. Plus when you sign up, you’ll get a soothing five-minute audio you can use right now.

In addition to being one of our favorite people ever, Shannon is a life coach who uses NLP and hypnosis (plus her general, plentiful smartnesses) to help others find clarity and make positive changes. She is a lifelong entrepreneur who has been self-employed since 1996.

We’ve heard Shannon refer to herself as the “Boring Life Coach.” Well, when she’s not off climbing mountains, that is. (Sorry, Dear ~ We’re not buying the boring bit.)

One of her core messages is that change doesn’t have to be angsty, drama-filled work. That it can be gentle and slow, and so easy it feels boring. No auger required. Aha! Now that’s the kind of boring we can get behind. We’re so happy Shannon is here today! (Bio courtesy of Eileen and Brianna of the Hopscotch Distillery. I couldn’t have said it better than this!)

So This Is The Conversation I Overheard Yesterday During My Acupuncture Appointment

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I confess that I was not in the best of moods when I went to this appointment, because I am in the middle of a flare-up that is just completely kicking my ass. As in, I refuse to look at myself in any mirrors as I pass them by so as not to scare myself by accidentally glimpsing the dark, sunken-in craters that my eyes have become, and also because it is almost to the point where just LOOKING at my skin hurts as much as if it is actually touched. THAT kind of flare-up.

(And speaking of being touched, WHY?! did I ever think it would be a good idea to go and let someone stick needles into said delicate skin, ESPECIALLY in the middle of a flare-up? People are all concerned about monitoring my medicines, but where was the monitoring when I was all, “Hey-you know what would be cool? Paying someone to jab me with lots of needles every week. WHERE WAS THE MONITORING THEN, PEOPLE?!)

But I’d already canceled this appointment twice, so part of me just wanted to go and get it over with. But I was not happy about it.

So I was lying there on the table, even more not happy about things now that I was full of needles, when the assistant led another patient to a cubicle two doors down from mine.

And then, as soon as that guy’s ass hit the table, he began an e-x-t-r-e-m-e-l-y long, annoying, and drawn out conversation with someone about whether or not his school was going to have spring break (hello, HAVE YOU HEARD OF LOOKING THINGS UP ON THE INTERNET?!), and then yet another conversation about something that happened to someone somewhere on some playground, and he said, but then they said, and, oh, well what did they tell you, and, and, and, AND! literally, except when it was absolutely necessary to draw breath, this man DID NOT STOP TALKING until the doctor finally (Finally! THANK YOU GOD!) stepped into his cubicle.

I couldn’t hear what the doctor said, because, UNLIKE SOME OTHER PEOPLE I COULD NAME, he knew how to speak in his “inside” voice.

But whatever he asked Loud Cell Phone Man unleashed a flood, nay, a TORRENT of words that could not be stopped, until they crashed right through my curtain and into the wall of my treatment cube.

(Important Side Note: I don’t have an audio recording of this guy, but when you read this paragraph, just remember how it sounded when you would take your old 45 rpm records and then jack them up to play at a higher speed.) “Well, they’re saying that I have really high blood pressure. I don’t know why. They gave me this prescription for blood pressure medication. Because they say that my blood pressure’s really high. But I don’t understand why they’re saying that. So I haven’t taken it. Because I don’t understand why they say that my blood pressure’s high.”

More words I couldn’t hear from the doctor, and then some words I ignored from LCPM.

But then, after a little while, I heard this: “Well, I guess it could have something to do with all the energy drinks I drink.”

I snorted.

The doctor: “How many do you drink?”

LCPM: “Um…well…2 or 3 a day.”

OH, Loud Cell Phone Man. I know that tone. I’ve used it myself to try and find a way to make bad things not sound quite so bad. So unfortunately, I know that what you actually meant was, “At least 3. And probably 4.”

So I laid there a little while longer, wondering when someone would come and un-stick me, and then I heard this: “Well, it could have something to do with the amount of coffee I drink.”

I snorted again, louder this time. Although not loud enough to be heard over LCPM’s unwilling confessions.

The doctor: “How many cups do you drink?”

LCPM: “Um…well…2 or 3 a day..”

Me (translating in my head): OK, so, at least three. Most likely four.)

And then I got distracted again by the voice in my head that was yelling, “OMG, TAKETHESENEEDLESOUTNOWORIWILLDIEEEEEEEE!”

But then, just seconds before the assistant came to free me, as if to reward me for my fortitude in enduring that day’s treatment, not to mention my restraint in not giving Obnoxious Talky Man some more serious medical problems to deal with than high blood pressure, I heard this:

“Well, it could have to do with how much I smoke.”

And then, as I lay there chortling with glee, I repented of the fact that I ever doubted that my acupuncture sessions would bring me some much-needed relief.

Well, At Least I Don’t Have To Read His Mind

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So the other night my husband and I were each reading our current book while eating dinner, when suddenly he looked up at me and said, quite deliberately, “Exodus 22:18”.

So I looked up from my book and waited for him to continue, thinking that maybe he had some kind of question or comment he wanted to share with me. But no. Instead he just sat there, looking at me expectantly until I said, “I hope you don’t expect me to know that verse from memory.”

“Well, yeah,” he said, not understanding what the problem was.

When all I did was stare at him incredulously he went on.

“There are certain things I expect of you,” he said. ” I expect you to know what any and every Spanish word means. And I expect you to be able to instantly hear and translate any part of a song or conversation we hear that’s in Spanish. And I expect you to know about religious things.”

“You mean you expect me to have the entire Bible memorized,” I said, trying to clarify what I’d heard.

“Well, yeah,” he replied, grinning. And then when I made noises of “yeah, what-EVER!”, he said, “just like you expect me to be able to solve every technical problem and fix everything around the house.”

“Yeah, but you can actually DO those things,” I protested.

“Well, you can do this stuff,” he said.

I snorted, and we both went back to our reading.

He finished eating first, and after he put his dishes in the sink he started walking to his office, but caught himself and then turned back for a final word in my direction.

“Oh,” he said, “AND I expect you to know everything about entertainment and celebrities.”

“Well why didn’t you say so in the first place?” I asked, throwing my hands in the air in exasperation. “THAT I can do.”

What Not To Say: Part 5

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About 2 1/2 years ago I wrote a series of posts all about What Not To Say to someone who is living with chronic pain and illness.

**Edited To Add**

Here are the links to the previous parts of this series.

“Part One“.

Part Two.

Part Three.

Part Four.

Recently I was reminded of something else to add to the list, so I thought I’d write about it here before I forgot.

7. What you say:

Hey-let’s brainstorm some solutions for you. I’m sure there’s some tiny step you can take to start recovering.

Trying to ask us any kind of “coaching” questions to “help us move/shift the situation”.

What we hear:

You’ve settled/given up/resigned yourself to your condition

You’re not trying hard enough to get better

You’re doing a shitty, half-assed job of working on your recovery

****

We are so sick. We are in so much pain. Please go away and leave us alone.

We have most likely just come home from our 75th doctors apt. of the week, where we just sat and listened while he listed yet another 10 things for us to try, with no guarantee that any will actually work for us. So we’re looking at another round of trial and error. Which we have no energy for, because it’s taking every ounce of our internal resources just to bear our pain/illness and get through today. But yet, we want and need to try some more things, because we DESPERATELY would like to find something that relieves our pain, at least a little bit, PLEASE GOD!

No matter what you’re going to suggest, trust us-WE ALREADY KNOW ABOUT IT. WE’VE HEARD ABOUT IT ALREADY. AND AS A MATTER OF FACT, WE’RE PROBABLY TRYING IT RIGHT THIS SECOND. Trust us, WE HAVE NOT ACCIDENTALLY OVERLOOKED ANYTHING HERE; WE ARE MORE INVESTED IN FINDING SOLUTIONS AND RELIEF THAT YOU EVER COULD BE.

You don’t know anything about what we are or aren’t doing with our doctors. You don’t know the plan we’re already on. And it’s too exhausting to explain it to you. And we don’t have to. We don’t have to prove to you that we’re already trying “x” number of things, or “prove” to you that yes, we ARE doing everything we can to try and get better. YOU DON’T KNOW WHAT OUR HEALING OR RECOVERY IS “SUPPOSED” TO LOOK LIKE, OR EVEN THAT IT IS SUPPOSED TO LOOK LIKE ANYTHING.

Healing looks like a lot of different things. Nobody knows yet what it is going to look like for us.

Just because it looks like there is nothing going on to you, doesn’t mean that nothing’s going on.

We are, or are about to be, or have just come out of, the depths of hell. And we know that it won’t be the last time. So to have a healthy person, who has absolutely NO CLUE what that is like come up to us and start chirping about, “hey, let’s brainstorm together,” or, “hey, I bet there’s at least one tiny step you could take here to start getting better”, or try and “coach” us in any way is just about the most evil, insensitive, painful thing we could hear right now.

Because it’s like you are just discounting everything that we’ve endured and everything that we’ve done, and everything that we are doing RIGHT NOW, as if it’s not real and doesn’t “count”. And infers that you, who have NO idea what we go through every single day, know more about dealing with our illness than we do. And that we are “doing” healing wrong, because we should be somewhere else than where we are, just to make you feel better.

I know that it is HARD, SO HARD, to watch us suffer. I know that you desperately want to offer us something that can help.

But, you have to respect our sovereignty here. You have to let us be in our own process. You have to let us be exactly where we are without trying to move us or get us to be somewhere else.

Because your wanting to give us advice, or coaching, or suggestions-that is about you; it’s not about us. It’s about trying to relieve your painful feelings that our situation brings up in you(which is completely natural and normal; nobody wants to suffer!) But you have to find a way to soothe yourselves that doesn’t depend on our doing or not doing something. It’s not our responsibility to make you feel better. Just as it is not your responsibility to make us feel better.

And please know that we know that, fundamentally, we are all doing the very best we can right now.

I’m hoping that my little, random, “You might also like these posts” will list links to the earlier posts in this series, but if it doesn’t then just search in the archives (which are in a drop-down menu on the right-hand sidebar) and pull up “August 2008”. The series starts with the post, “I Suck, Thanks For Asking“.