Category Archives: Living Beautifully

Four Simple Steps to Making Healthful Changes In Your Life

Image of apple and hamburger on scales

Choose wisely . . .

You know you need to do It.

Tons of people have told you about It’s importance in your life. How It will make you feel better. Reduce your pain. Improve your sleep. Give you more energy. Help you lay off the meds.

And yet …

You haven’t done It. Because whatever “it” is for you, doing “it” is a whole lot easier said than done.

Whether we’re talking about eating more healthfully (or eating differently, even), laying off the alcohol, quitting smoking, starting an appropriate and gentle exercise routine, or any other major lifestyle change – well, change is hard, Dolls.

But there’s a simple (note: I did not write easy) way to make It easier. Four simple steps that can help you knock that change out of the park and straight into Habitville, regardless of what “it” is.

Overview of the 4-Step Process to Breaking Bad Habits and Creating Good Ones

In a nutshell, here’s what you do:

  1. Get Clear on Your Reasons
  2. Retrain Your Thoughts
  3. Enlist Your Army of Support
  4. Focus on the Positive

Let’s take a closer look at each step, shall we?

One: Get Clear On Your Reasons

Before you set a quit date – before you clean out your ashtrays – before you go grocery shopping for veggies and fruits – before you buy one single exercise DVD – before you do anything else, you need to sit yourself down with a pen and piece of paper, and write out every single reason you’ve got for making this change.

Cautionary Note: Use pen and paper! The act of handwriting, for some reason, seems to make the process “stick” better with you, emotionally and mentally. Forget the computer for this one. You want a handwritten list you can actually carry around with you.

Be specific, too. Let’s say you need to quit smoking (you do, you know). Don’t just write down “it’s too expensive.” Write down ALL THE THINGS that you want but can’t afford because of that $5 a day habit.

Get emotional about it. These reasons must be meaningful to be effective. When I quit smoking years ago, I wrote down “I don’t want my daughter to be standing at my funeral and hear some bitch whisper ‘Well, you know, she smoked…’” If you don’t think that will grab your heart and rip into a million pieces quite effectively … well, just trust me. It worked.

Aim for quantity AND quality. Seriously, five pages isn’t too many. Just make them important to you.

Two: Retrain Your Thoughts

This one’s tougher than the previous step. It takes consistent effort to change your thoughts and make that new way of thinking habitual. At first, you’ll need to rely on a prepared script.

Actually, that’s not a bad idea – literally. Write down the new thoughts and carry them with you. You can even riff off your reasons list.

But first, an example. Let’s go back to the smoking cessation thing. Now, normally, when someone tries to quit smoking, they view the subsequent cravings with dread. “Oh, geez,” they’ll think, “not another craving. When will these stupid cravings END?!” And they’ll get upset. Which makes them stressed. Which makes them want a … you guessed it: a cigarette.

Here’s what you do instead: reframe your thinking. When a craving for the thing you’re giving up hits, physically change your position and then change your thoughts. Tell yourself something different – something positive.

What I did when I quit smoking: “Here comes a craving! Yay! I wouldn’t be having a craving if I hadn’t quit smoking. Instead, I’d be smoking. So the fact that I’m having a craving means it’s WORKING! YAY!”

Yes, you’ll feel like an idiot. No, I don’t care. It works. Do it.

Three: Enlist Your Army of Support

You need help. We all do. You’re going to face a boatload of temptation, and you need people around you to shore you up when your defenses are weakened (and they will be, because – and I hate to be the one to break it to you – you’re human).

So start with the people around you. Announce the change. Tell them straight up what you need. “Mommy’s going to be eating more healthfully. So I need for you to stop offering me your Easter candy and leftover desserts, OK? I really appreciate your thoughtfulness, but let’s find other ways to show Mommy you love her, ‘kay?”

“No, honey, I do NOT want a drink, and you need to stop offering them to me or I will divorce you immediately and run away with Javier Bardem. Got it?”

Like that.

Also, don’t forget online support groups! The QuitNet boards were my saving grace when I quit smoking. There are lots of options for just about every single change you could possibly want to make, so look for them, find one that feels good, and join. Then participate in it.

Four: Focus on the Positive

Here’s what I’d consider the most crucial step, and it’s all built on a sordid little truth about human nature:

We really hate to give up stuff we like.

If you focus on what you’re not doing – what you’re giving up – your brain will inevitably rebel. Maybe not at first, but it will happen, and it will leave you feeling about one inch tall with zero willpower.

But it’s just human nature. So, what we have to do if we want to successfully stop doing something that’s bad for us is switch it around and reframe the whole experience as a positive thing.

Not just “positive” in terms of “it’s good for me” – but “positive” as in “what’s IN IT for me?”

So, I’m not quitting smoking: I’m gaining better breathing. (Also: the ability to wear expensive scarves without worrying about burning a hole in ‘em…)

I’m not quitting overeating: I’m gaining a more rockin’ body.

I’m not giving up alcohol: I’m gaining a kick-ass brain (and liver).

OK, you get the picture.

Now, go change your life!

A Doll’s Story: Interview with Melanie Notkin of SavvyAuntie.com

Every Doll Has a Story . . .

It’s my fervent belief that facts and figures don’t move people to action — stories do.

And every Trauma Doll has a story. Meet one of your sister Dolls in our new feature, “A Doll’s Story,” which we’ll post every so often. Each Story will show you yet one more reason not to lose hope over coping with chronic pain.

Today’s Story belongs to a real “aunt”-trepreneur, SavvyAuntie.com’s Melanie Notkin!

Image of Melanie Notkin of SavvyAuntie.com

Meet the Savvy Auntie Doll, Melanie Notkin

Interview with Melanie Notkin

Melanie, I cannot thank you enough for doing this. You and I have been following each other on Twitter since 2009, I think, and I’ve loved observing how you built up SavvyAuntie.com into such a successful lifestyle brand and website. I was astounded when you told me recently you accomplished all this while dealing with chronic pain yourself! Tell us a little bit about your history with fibromyalgia and myofascial pain.

It’s my pleasure to speak with you about my chronic pain and how I’ve refocused my life.

I don’t remember a time when I wasn’t in some sort of pain, even in mild forms. When I was little, I suffered from what they called ‘growing pains’ in my legs. When I got to the tween years, I began complaining about pain in my upper back and neck. My mother’s rheumatologist poo poo’ed it, saying I was probably carrying my backpack incorrectly… but I knew it was something more. But at age 14, what are you going to say? At 16, as growing pains subsided, the pain in my neck grew more intense, but I learned to live with it and take ibuprofen on the bad days.

When I was in my mid-twenties, the pain became unbearable at times. I went to see a sports MD thinking he might be able to help. After about 5 minutes of massage, he pressed on various place on my body which I realized had focused pain. He suggested I might have fibromyalgia and I quickly bought every book on the subject. (This was in the mid 1990s, before the Internet was a natural go-to place for research!)  I had 11 of the 18 touch-points associated with fibromyalgia.

While the pain did not go away, the relief that I was part of a community helped. My rheumatologist confirmed I have the syndrom as I also have a (mild) case of rheumatoid arthritis and therefore it’s not unlikely as the two often go together.

In my mid thirties, I went to see a physiologist who said that the intense pain on my left side was myofascial pain (because I had the pain without touch). Around that time, I had complained to my former internist about my pain and described it as a migraine in my back. (He wasn’t a fibro-believer). He prescribed migraine meds which I still take on bad days. They are a gift.

How long did it take you to get a diagnosis, after the symptoms first began showing up?

Twenty years.

What’s your current treatment program like? Can you describe what you do regularly to keep chronic pain at a minimum and how you stop it from stopping you?

I take a migraine med called Fioricet (please don’t take anything without your doctor’s approval!) on intense days as soon as I feel the pain coming on. Exercise (20 minutes on a stationary bike and 20 minutes of weight training) helps too. I’ll also treat myself to a 10 minute massage at the nail salon (very common here in New York City) or on those really bad days where even Fioricit won’t help, an hour massage.

April and October seem to be my worst months, so I take ibuprofen on my ‘every day pain’ days.

Since I’ve had pain my whole life, I can’t let it stop me. Now my pain may not be as bad as that of some of your readers, or it may be worse than others. But for me, focusing on pain feels like defeat. What a downer! So I focus on success instead. In fact, I rarely talk about pain and have since thrown out all those books I bought on fibromyalgia. I just don’t like the painful energy in my home.

One of my biggest pet peeves is the way a lot of us with chronic pain — particularly those of us with chronic fatigue and fibromyalgia — are met with suspicion right out of the gate by so many in the medical profession. Have you ever experienced that? How did you deal with it?

Yes, as I said above, some of my doctors didn’t believe my pain. The first, when I was young, had diagnosed my mother with Lupus, one of the first in Canada. He was a good doctor. I think my young age is what fooled him and I don’t blame him. Besides, it was the 1970s and fibromyalgia was not a known diagnoses.

The second was an internist I had in my 20s and 30s who never believed me when I knew something was wrong, even saying once I has the stomach flu until I insisted he take blood. I was actually very ill (all better now!). So I learned early on to speak up for my body. She’s mute. I’m not.

I like to encourage myself and others to dream big, but a lot of folks with chronic pain don’t see how that’s possible. I understand that response, completely — dealing with chronic pain is often a full time job in and of itself, and it’s exhausting sometimes just trying to stay well and functional. I think sometimes the way we talk to ourselves about our pain can be one of the biggest obstacles we face. Yet I look at what you’ve accomplished and I have to conclude SavvyAuntie.com was a HUGE dream, and there you are, living it every day. What kind of self-talk did you have to change or develop in order to keep yourself on track with this big dream?

Pain will not defeat my dreams. And in fact, focusing on building a business I love has quieted down the pain because I have so much else to focus on.

A lot of women with chronic pain have a very hard time making ends meet financially, and one possible solution is self-employment or entrepreneurship. What advice can you give Trauma Dolls’ readers who are interested in exploring building their own businesses, in spite of their chronic pain?

My chronic pain is manageable. For others, it may not be. So for me, it was never an issue as I’ve had it my entire life and it’s never stopped me. That said, in 2005 I woke up numb on one side of my body and later learned it was a symptom of the onset of Multiple Sclerosis.

I was working in corporate America under a lot of stress and aggravation. Instead of launching a Website that summer, I was in the ER trying to understand why my body was numb.

While my neurologist says that stress has not proven to be the culprit of MS, I knew that one type of stress, “aggravation,” often brought on symptoms and am not surprised that during that time at my job, MS came knocking and said: Ready or not, here I am! (By the way, all of the challenges I have are likely all autoimmune issues and are probably related in some way.)

All this to say that while having one’s own business and investing one’s life’s savings in it is stressful to say that least, I don’t have aggravation. My symptoms for all challenges are lessened because I can control my aggravation levels better than when working with people that don’t offer me the solutions I believe in. Being in control of who I work with and the situations I work under to a greater degree means I can control best what creates pain or weakness – not all the time – but more so.

Bad days happen to us all. I had one yesterday — there was just no way I was getting out of the bed to finish moving out of my old house. What do you do when a bad day hits?

I don’t punish myself for slowing down. I look for ways to focus on things that bring me happiness or calm me (I call or visit my nephew and nieces!). I take something for the pain, go to the gym and/or get a massage. I take a break. I push through. I have no choice.

I hear you’ve written a book — tell us about that?

Yes! Savvy Auntie: The Ultimate Guide for Cool Aunts, Great-Aunts, Godmothers and All Women Who Love Kids (Morrow/HarperCollins) is being released on April 26th!  It’s based on my Savvy Auntie lifestyle brand, the first for the nearly 50 percent of American women who are not moms but love a child in their life!

What’s next for SavvyAuntie.com and Melanie Notkin?

The book is a huge focus for me and the brand right now… as is continuing to build the Savvy Auntourage. There are 40,000 fans on Facebook.com/SavvyAuntie now, growing daily! And mark your calendar! The third annual Auntie’s DayTM is July 24th, 2011!

Last question! Let’s play make believe. You meet a woman who tells you she’s just been diagnosed with a chronic pain condition. She looks depressed, sounds scared, and seems overwhelmed. What one (or two or three) pieces of advice do you share with her, from your perspective having dealt with fibromyalgia and chronic pain for so long?

Our pain is not terminal. Do not let it kill your spirit either. Keep going!

NB: This interview was supposed to be published on March 15th, and sadly that didn’t happen due to a computer hard drive crash (that would be mine — sigh). I’m going ahead & putting this up, even though the event’s over, ’cause you should still totally buy Melanie’s book and donate to Project Ladybug yourself. OK, thanks!

Melanie is asking all those considering ordering her book Savvy Auntie to please pre-order it Tuesday, March 15 on Amazon.com to help her move the book up the rankings there. Send an email to Book@SavvyAuntie.com telling her you’ve pre-ordered the book because Melanie will donate $1 for **every book pre-ordered that day to Project Ladybug, a fund dedicated to enriching the lives of children with life threatening conditions co-founded by former Bravo Real Housewife of New Jersey, Dina Manzo.

(**Up to $1000)

How to Combat Fibro Fog and Get Your Brain Back in Gear: Better Sleep = Functional Brains

NB: This is the second in a four-post series about how to combat “fibro fog” and improve cognitive function. Post #1 examines fibro fog in its various manifestations and examines some possible causes. It also provides an overview of a three-phased approach to combating fibro fog that the remaining posts in the series will examine in more detail. This post looks at improving sleep; post #3 outlines strategies to keep your brain challenged and healthy; and post #4 examines various coping mechanisms to deal with the fibro-fog effects that can’t be eliminated by the first two phases.

Why We Start With Sleep Problems When We’re Combating Fibro Fog

Most experts agree that sleep is, if not the single cause of fibro fog, one of the largest contributing factors. Although fibromites can have wildly divergent experiences with this condition, one thing that almost all of us share in common is poor sleep and not enough of it.

As most of us who are parents learn when our children are infants, there’s a very good reason that sleep deprivation is used as a torture technique: it works! Inadequate rest can quite literally shut your brain down, increase confusion, deaden your reflexes, and create massive gaps in your memory and recall ability.

So, we start with improving our sleep in Phase One of this three-phrase approach.

Phase One: Address Your Sleep Issues First

Start by attacking the generally-agreed-upon root cause of fibro fog first: poor sleep. Begin by taking a week-long “read” of your current sleep patterns. Ask yourself the following questions:

  1. How long do you sleep at a time?
  2. How often do you reach waking consciousness during the night?
  3. How many times are you aware of moving in bed because of pain?
  4. What is your pain level when you go to bed compared to when you get up in the morning?
  5. What is your current nighttime pre-bed ritual?
  6. What did you have to eat and drink before bed, and how close to bedtime were these taken?

If you can arrange to perform this initial survey during a week when you don’t have to set the alarm to wake up, you’ll get more reliable results. But start with wherever you are and do the best you can.

Analyze Your Results

From your informal survey of your past week’s sleep patterns, you should now have a clearer idea of what your specific sleep issues are, whether that’s waking up too many times during the night, falling to sleep in the beginning, or sleeping long enough overall.

Now you can begin to adjust your sleep-related habits more effectively. I suggest trying each major adjustment one at a time for a week or so, before adding or trying another. This gives your body time to adjust to the new routine but also allows you to see which adjustment “did the trick” if you begin experiencing improved sleep.

Basic Sleep Hygiene

Begin by improving on some general “hygiene” habits that have been shown to improve sleep in terms of both quality and quantity. These suggestions include:

  • Lower the temperature in the room. Studies show we sleep best in cooler temperatures.
  • Experiment with pillows to provide support beneath and between knees, depending on your preferred sleep position, to ease pressure on the back.
  • Move all electronics out of the bedroom, save for an alarm clock if necessary. But turn the alarm clock away from the bed, to remove the temptation of looking at it when you have trouble falling asleep; this will only increase anxiety.
  • Leave at least three hours between your last meal or drink before bedtime. This can reduce the urge to urinate in the middle of the night, which might help your body stay in the sleep pattern, instead of waking to go to the bathroom.
  • Experiment with white noise or nature sounds to prevent waking due to household noises.
  • If you like to read before bed, watch what you read: eschew thrillers and tightly-plotted suspense novels for more literary or spiritually-themed books that you’ll be able to put down more easily. (I can personally recommend Marcel Proust’s In Search of Lost Time!)
  • Try installing a home fragrance diffuser or air freshener with a lavender scent. Better yet, use lavender water to freshen your bed linens. Lavender has been shown in several studies to produce a relaxing, calming atmosphere.
  • Put up blackout curtains underneath your normal bedroom window coverings to block out all ambient outside light from streetlamps, full moons, and the sun in the morning.
  • Eliminate caffeine from your diet after 4 PM, or better yet, eliminate it altogether. Some people appear to be more sensitive to this drug than other people are, and by eliminating it completely, you can tell whether you’re one of those people. If your energy picks up dramatically during the day (an odd but not uncommon side effect for caffeine sensitives) and you fall asleep more easily at night, you’ll know to avoid caffeine in the future.
  • If you like to take a bath before bed, make certain the water is not too hot. Increases in body temperature can make falling asleep more difficult.

Should You Try Medication?

If all else fails, consider speaking to your doctor about medication to help you sleep. For fibromyalgia patients, these drugs can either be pain-relievers (if it’s the pain keeping you from attaining good rest) or sleep aids such as Lunesta and Ambien. Talk to your physician to determine whether one or both of these might be a useful addition to your treatment program.

While some are resistant to prescription drugs for fear of becoming addicted, the truth is that the real rate of addiction in chronic pain patients is pretty low.

The media doesn’t do much to assuage these baseless fears and in fact aids in the perpetuation of the chronic-pain-addict myth by confusing two very different concepts: addiction and dependence. Addiction is a psychological malady that is an unfortunate side effect of using pain medication for the wrong reasons; dependence is a perfectly normal and expected physical state that results from the proper use of such medications.

If you’re concerned about dependence, as opposed to addiction, your doctor should be able to reassure you and give you ways to keep your body from becoming dependent, if you’re steadfast about that. If you have reason to be concerned about addiction, then you should still talk to your physician because there may be non-habit forming alternatives you can try.

The bottom line is that sleep isn’t just a good idea or something you’d like to have more of: it’s absolutely crucial for everyone, but especially so for chronic pain patients, and maybe even more so for fibromyalgia patients. Why? It’s only during restful, deep sleep that our muscles can heal.

So, whether you decide to try medication, or decide against it, that’s an extremely personal choice. But whatever you do, don’t give up on the quest for a good night’s sleep. It’s that important.

In the next post in this series, we’ll examine strategies to keep your brain challenged and healthy.

How to Be a Good Friend to Someone With Chronic Pain

Today’s post is aimed at a slightly different reader — not the fibromyalgia sufferer or any other chronic pain patient for that matter, but the friends of people with chronic pain.

The Gift of Friendship — The Challenge of Chronic Pain

I know it’s not easy being the friend of someone who’s in pain most or all of the time. You probably have a lot of mixed emotions about your friend’s new reality. You might be concerned for your friend’s prognosis. You may miss doing fun things together, or even resent how much of your friend’s time and attention her condition now consumes. You may even have some doubts about whether her health is really “that bad” — especially if she “doesn’t look sick.”

But you’re also in a wonderful position, in a way. You’ve got some objectivity, of course — the pain isn’t happening to you, so you can be an incredible source of guidance and feedback when it comes to trying new therapies or making adjustments to daily life. You’re also motivated by friendship and that means you’ve got compassion for your friend’s new challenges. That compassion is something all of us need from time to time, no one more so than a chronic pain sufferer.

Straight From the Horse’s Mouth: How You Can Be a Good Friend to a Chronic Pain Sufferer

I asked some of my “fibro-friends” on Twitter what they thought about this question: “What piece of advice would you give to someone who wanted to be a better friend to someone struggling with chronic pain?” The responses I got were incredibly moving and may help you in your quest to be a better friend.

Just Listen, Even When It’s Hard

First, they said, it would help tremendously if you would just be there for us. Be a shoulder to cry on, listen to us rant and whine on occasion when the pain stops us from doing what we really long to do. It’s hard to listen to someone you care about who’s in pain, we know, but your presence really does help. We need people to listen to us — to hear our stories — and to hear us with compassion. That’s something you can do better than anyone else.

Send Us Good Information, But Beware of Claims of “Cures”

Second, we welcome your interest in our condition. Please do keep emailing us news clippings that you find about our condition. But we do have one request: ignore the ones that say we can be “cured” with one simple supplement, or readily available substance.

For most of us, there is no cure yet, although researchers are constantly at work on these conditions and we’re all hopeful. The most that we can hope for in the immediate future, however, is successful management of our symptoms. So, check out the source of that article you’re thinking of sending. If it’s a press release, you can skip it. If it’s a true news piece, send it on.

Understand What We’re Talking About When We Say “We Hurt”

Third: please understand that our pain is not like the normal, average everyday aches and pains that almost everybody endures as they get older. This stuff is potent pain of the highest magnitude, and it interferes with everyday life.

When a fibromyalgia patient says she hurts or is experiencing a flare, for instance, you can understand what she’s going through by remembering what it feels like to have the flu — not the stuff you call the flu when you’re really just not feeling well and don’t want to go to work, but the honest-to-goodness, kills-people-every-year influenza. Remember those deep-rooted widespread body aches? That’s what a flareup feels like, only it doesn’t go away with Tylenol.

The One Thing You Should Never Say to a Chronic Pain Sufferer

So, while it’s perfectly normal to think “Well, everyone hurts now and then …” — keep that thought to yourself, please.

We know everyone hurts — but not everyone hurts like we hurt, and when you say things like that, it just makes us feel (A) terribly alone and (B) that you don’t believe us, that you think we’re just malingering. Please trust me: we’re not hypochondriacs or malingerers. We hope for nothing more out of life than one more good day, one pain-free day, and, please God, a cure for what ails us.

Grace Us With Your Presence

Finally, please don’t forget about us. It’s going to be hard, we know. Especially when we’ve both lived with this condition for awhile, and you start to realize that there’s really not much you can do to make us feel better, and there’s not much we can do to rejoin life as we used to know it.

You’re going to start telling yourself, “Well, there’s nothing I can do to help. And I know she doesn’t want to or can’t go do __________ (whatever you’ve got planned for the day).” Then, the next thing you know, you’re not calling or emailing, and we haven’t seen each other in ages.

Please resist that temptation. Even if you know we can’t join you, it still feels good to be invited from time to time.

And even though, yes, you’re right, there’s not much you can do to make us feel better, there is one thing you can do — and that’s grace us with your friendship and your presence. Call and see if you can just drop by for a chat. Tell us about fun things you’ve been doing — even if we seem envious, we’re really happy that we can at least live vicariously through you! Keep us in touch with what’s going on out there in your world, because we do care about you, even though it seems sometimes as if all we can think about is our chronic pain condition.

We need friendship, just as much as we need good pain relief and a caring, competent doctor. We hope that our pain doesn’t scare you off, because your friendship does mean so much to us. Take us as we are, but please don’t forget that underneath all the new stuff that any serious health condition brings, it’s still us in there — the same friend who’s loved you and relished your love for years.

Welcome to Chronic Pain: Ten Tips For the Newly-Diagnosed

For those of us who’ve been living with ME/CFS or fibromyalgia or any other chronic pain condition for a few years, it might be hard to recall those early days after we were first (finally!) diagnosed.

But for those people who have just gone through that experience, you may be feeling a myriad of competing emotions, stirred together and topped off with a healthy measure of “What the heck do I do now?”

Here are ten tips to help you manage the confusion and overwhelm following a diagnosis of a chronic pain condition.

1: Understand Your Chronic Pain

While it’s unquestionably true that the experience of a chronic pain condition can vary drastically from person to person, you should take time now to find out what you’re dealing with, as soon as possible. Find out as much as you can about the “usual” progression of your disease or condition, as well as the range of symptoms and associated conditions you might expect along the way.

Knowing what to expect is important when you’re beginning a long journey with a new condition. You’ll find out soon enough that every new ache and pain and discomfort can soon make you nuts, wondering “Is this something to worry about? Or is this just part of my condition?”

If you can get as much information as possible at the outset, you can save yourself some anxiety, and make better decisions about your medical care.

2: Stay As Active As Possible

Study after study shows the benefits of light exercise for chronic pain patients. (Just this week, we hear news of a study showing adolescents with fibromyalgia experience less pain if they maintain some level of activity — Doctor’s Guide, via Fighting Fatigue.

Good choices for those living with chronic pain conditions include walking, swimming, yoga, and Pilates. Start with a one-on-one class, if you can — and if your area is lucky enough to have such a person, find a teacher with experience dealing with students who have chronic pain conditions. (Tip: Identify all area yoga teachers, for example, then call each studio and ask if any teacher there has dealt with your disease or condition, either personally or through students.)

For more on getting an exercise program in place while you’re coping with chronic pain, see my recent post “Exercise and Fibromyalgia: A Love/Hate Affair.”

3: Make New Friends Who Know What You’re Going Through

Support groups can help — but they can also hurt. Be careful with this one.

Here’s why: How we talk to ourselves about our pain has a definite, measurable effect on our perception of that pain. Given that we all have a right to put a voice to our pain, to tell our stories and have them understood, a support group would be a natural way to explore that process.

However, the catch is that when we all tell our similar-yet-different stories, we’re all susceptible to a perceived or real increase in pain.

So, it’s important to find a group that encourages healthful, positive ways of dealing with the disease.

This is not to say that you should tell your story only to Pollyannas, who will then tell you to smell the roses and just get moving or try this, that, or the other alternative treatment and you’ll be right as rain. That, to my way of thinking at least, would be worse than being hyper-aware of my pain, frankly.

What I am saying is this: look for a group that focuses on solutions — that allows its members to freely discuss their stories and rant and rave if they like, but that, in the final analysis, wants to help each other do better.

That’s real support. Otherwise, it’s just a bitch session over coffee and for that? I have my best friend.

4: Keep A Wellness Log to Track Your Symptoms

Get in the habit of keeping a daily record of your symptoms, together with any factor that can affect your experience of your pain. You can do this in a computer file — a plain text document, for instance, or an Excel spreadsheet if you’re feeling really ambitious.

Or you can get a simple flip-top reporter’s moleskine, which is what I use. Here’s an example of this model, from Amazon (affiliate link).

At a minimum, you should track:

  • Your daily food intake
  • All medications, including time and dosage
  • All supplements you take, including time and dosage
  • Your sleep — duration and quality
  • Your activity level, including household chores and more formal exercise
  • Any significant alterations in mood and stress level
  • And, of course, your symptoms, preferably ranked on some sort of numerical scale

A note about pain perception scales: whether you use the traditional “1 to 10” or some other model, ranking your pain is not about minimizing it or defining it. Rather, it’s merely a useful tracking tool for you and your physicians to be able to see changes over a period of time.

For instance: if you experience a flare-up within 24 hours after you attend a particularly strenuous yoga class, and this continues to occur as a pattern, you can make an informed choice about whether a more slow-paced or restorative class focus might be more beneficial to you.

5: Talk To Your Family & Significant Other About Your New Journey Together

Get those close to you on board with the concept of this new experience as a marathon, not a sprint. It will affect all of you, and you should start now to cultivate a habit of open, honest communication with them about your condition.

Sit down with them for an extended “family meeting” and make sure you cover the following points at a minimum:

  • Your diagnosis
  • Your prognosis
  • Likely symptoms you may experience — even if you’ve had them already, you need to make sure they understand, very simply, how you feel
  • What they can expect from you
  • What you need from them

Cultivate a “team approach” right from the start, and then when things inevitably get more stressful down the line, you’ll all feel more comfortable having an honest talk about it sooner rather than waiting until feelings reach the boiling point.

6: Monitor Your Sleep

Changes in your condition often manifest first in your sleep patterns. Note these changes on a daily basis in your wellness log, but also pay attention to your “sleep hygiene” — the practices and “rituals” you’ve developed, sometimes unconsciously, surrounding your nightly sleep.

In many cases, simple adjustments in your nighttime rituals can enhance the quality of your sleep. But first, you have to know what you’re doing now.

Take note of whether you read or watch television; what you read or watch; what music you listen to; the temperature of the water if you take a bath; how close to bedtime you last ate or drank anything; how often you get up to go to the bathroom at night …

These and other factors can indicate a potential problem with your sleep patterns, and you can then work to change those rituals to increase your body’s chances to heal itself while it rests.

7: Revise Your Expectations of Yourself

While I don’t advocate thinking of yourself as a victim or a patient, you will have to wrap your brain around a changed reality, at least for the time being.

Normally, by the time you reach a diagnosis, you’ve already had some period of time where you’ve experienced the pain symptoms. But it’s all too human to think “This is just temporary. As soon as I find out what it is, I can cure it and I’ll feel all right again.”

Of course, everyone hopes that’s the case. But the sad truth is that with most chronic pain conditions, we have no cures. We have treatments, and many of them may offer substantial relief.

But even the mere act of finding those treatments that are successful for your disease can be quite exhausting. So lower your expectations of yourself for awhile, while you get acquainted with your condition and your changed reality.

8: Clear Your Plate

Healing from a chronic pain condition takes an awful lot of energy. Don’t let self-imposed feelings of obligation diffuse that energy unhelpfully.

Think carefully about obligations you’ve incurred in the past, and ask yourself a hard question: If this obligation presented itself to me today, would I say “yes”, knowing it takes energy and time away from my efforts to heal?

Some obligations you can’t — and don’t want to — give up. Although child care is a taxing prospect even for the perfectly healthy, for instance, I’d never let my child live somewhere else, even though she has many relatives who love her dearly and would care for her if I couldn’t.

The truth, for me, is that caring for my daughter gives me as much joy and pleasure as it takes away in energy or time. So — again, for me — this is not an acceptable obligation to walk away from.

But a great many of your obligations can and should be renegotiated. Your priority must be your own health. Don’t just give lip service to this idea. Do yourself the honor of making this a true commitment, and let go of those things that impede your progress where you can.

9: Practice Radical Self-Care

Taking care of yourself is about to take on a whole new meaning for you.

Radical self-care is all about protecting yourself, knowing that when we put ourselves first, we are then more capable of helping others.

Radical self-care is a concept that deserves a more thorough treatment than a single mention in one post, and it’s a favorite topic of mine that I’ll address in more depth in future posts. For now, just be aware of what it encompasses:

  • Eating the highest-quality whole foods you can afford and drinking the most healthful beverages only
  • Taking total care with and paying perfect attention to your medications and supplements
  • Dedicating sufficient hours to restful sleep in the most serene, comforting environment you can manage to create
  • Daily meditation (and prayer, if it comports with your spiritual beliefs)
  • Daily movement and light exercise — always honoring your limits
  • Integrity in your commitments to yourself
  • Managing your expectations of yourself
  • Maintaining positive self-talk (see the next item in this article)
  • Practicing impeccable hygiene on a daily basis

10: Learn and Change Your Inner Monologue

The words we use in our thoughts and the long-running “tapes” that keep playing in our heads have real, concrete effects on our physical lives.

Pay some cold, hard attention to the inner monologue you’ve got running now. Is it full of hopelessness and despair? Is it based on fear?

If so, welcome to the human race. It’s only natural, once the giddiness of finally obtaining a name for the mysterious beast you’ve been fighting for so long evaporates, to find yourself focusing on the end game and wondering just how long you’re going to have to struggle with this pain.

While it’s perfectly understandable, and you should absolutely acknowledge and deal with all your feelings, including the so-called negative ones, you should take care not to allow those feelings to become the source of your inner self-talk.

Take some time every day to counteract those normal feelings of anxiety and worry with positive imagery and messages.

Tell yourself the truth — you don’t know how long this will last but you are doing everything humanly possible to manage it and heal from it. You’re taking radical care of yourself, you’ve put yourself and your own wellbeing ahead of everything, you’re in the process of renegotiating obligations that prevent your healing, and progress is being made every single day in the fight against chronic pain.

Let that be your gift to yourself. It really does help keep your energy and your spirits up — and yes, it does make a difference in how you manage and deal with your chronic pain.

To all my fellow old-timers, what did I miss? What advice would you give the newly diagnosed? Leave your suggestions in the comments!

Sirena Dufault: A Walking Inspiration for Fibromyalgia and Other Chronic Pain Patients

Sirena Dufault on the Arizona Trail to promote fibromyalgia awareness

Sirena Dufault on the Arizona Trail to promote fibromyalgia awareness

It’s amazing in itself, even without the backstory: Sirena Dufault, a 35-year-old woman from Tucson, Arizona, is hiking an 800-mile path called the Arizona Trail, start to finish.

What’s inspiring about it for me and thousands of others like me: Sirena has fibromyalgia.

For ten years now, Sirena has been living a life that’s familiar to all of us who’ve received that diagnosis — a life of pain, of medication, of seeking any and all treatments promising relief, of compromises and limitations.

Yet Sirena has undertaken something precious few of us could even begin to consider in our own lives: a massive, difficult physical challenge. And she’s doing it to raise awareness of what we’re forced to live with on a daily basis.

You can follow Sirena’s trip, which she plans to finish up on May 12, National Fibromyalgia Awareness Day, here at her blog. You can also read this article about Sirena’s hike for fibro at the Tucson Citizen (free registration required).

I have more to share on Sirena’s inspirational example in tomorrow’s post. Make sure to come back around noon on Friday, May 8th, to read more about movement, FMS, and courage.

Big Dreams, Small Mercies: How to Set Goals When You’re Living With Chronic Pain Conditions

Whether it’s the desire to lose 20 pounds for your high school reunion, or the determination to find a job that ignites your passion, goals don’t cease to be a part of your life when you’re diagnosed with a chronic pain condition. Often, our broader lifestyle-related goals are at first put on hold while we research the new universe we find ourselves in, and are supplanted while we seek the treatments that work, the accomodations that let us do our jobs, or continue to earn a living after being forced out of a job that no longer fits, and the means to that most cherished goal for the chronically-pained: a good night’s sleep.

Don’t Be Afraid of Big Dreams

It might seem impossible, while you’re consumed with achieving some minimal measure of quality of life, to even contemplate setting big goals, much less setting out to achieve them. But every big goal must begin with a big dream. When we give up on big-dreaming itself, it’s a signal to our subconscious minds that we’ve accepted the severest of limits for our lives.

Allowing our imaginations to run freely, we send a very different signal to ourselves — that we’re not in this just to “get out alive” (because, after all, no one does in the end), but to feel joy, to enjoy life to its fullest — in short, to thrive.

Credit Where Credit’s Due: Acknowledging Small Victories With Chronic Pain

At the same time, we don’t really give ourselves sufficient credit for the small goals we’ve already met along the way. Something as small as figuring out a better yoga posture adjustment that takes into account our particular symptoms, or even getting up and taking a shower on some days, should be acknowledged as a goal set and met.

One way to get a better perspective on your little victories is to take a few moments at the end of each day and jot down in a journal three or four things you did that day of which you can be proud. Review past entries on occasion, especially when you’re feeling a little less than effective on bad days.

Making Goals SMART

If you want to try setting some goals, while taking into consideration your chronic pain, then be SMART about it!

  • S = Specific: Make sure your goals are specific, not general and vague. “Lose 10 pounds” is specific; “lose weight” is not.
  • M = Measurable: How will you know when you get “there”? Measurable goals suggest their own tracking methods. Again, “lose 10 pounds” is measurable — simply get on the scale. “Feel better” — not only vague, but how exactly would you measure “better”?
  • A = Action-Oriented: Choose goals that require some action on your part, not goals that are wholly outside your control.
  • R = Realistic: Finding a cure for fibromyalgia is specific, measurable and definitely action-oriented, but is it realistic for you at this time in your life? I’m not advocating “dumbing down” your goals, at all. But don’t set yourself up for failure right at the start.
  • T = Time-limited: Select a reasonable time period in which to make progress or achieve your goal. Deadlines give us a little beneficent pressure which can keep us highly motivated to stay on track.

Should you select one goal to begin with? Many coaches advocate this as a way to maximize your chances of success. My advice: it depends on the nature of your goal. Some goals, including many physical goals such as losing weight, or starting an exercise program, can be achieved at the same time as other, more complex goals. Use your common sense and self-awareness. If you don’t think you’ll be able to stay on track with more than one goal at a time, then just choose the most important.  Otherwise, feel free to explore a few at a time, as long as they are personally meaningful.

Honor Your Limits? Or Refuse to Accept Them? Some Thoughts on Chronic Pain and Personal Beliefs

When I was first diagnosed with fibromyalgia, my reaction was surprising, even to myself. I felt this overwhelming sense of relief, pure and giddy relief. Far from being devastated by the incurable nature of the illness, or the lack of any dependable treatment (this was 10 years ago), I was so overcome with gratitude to finally, at long last, have a name for what I’d been feeling for so many months.

Since then, I’ve discovered this isn’t an uncommon initial reaction. Lots of us have been battling for so long with the naysayers, the ‘it’s all in your head’-ers, the ‘you’re just tired’-ers — not to mention the utter lack of information — that by the time we finally achieve that diagnosis and have a word to put to the horrid aches and myriad other symptoms we’ve been dealing with, we truly are relieved.

But after diagnosis, my emotional reactions to this illness’s ups and downs have been all over the map. Flares don’t always make me feel hopeless, and remissions aren’t always accompanied by contentment and joy. One emotion — or perhaps it’s better termed a belief — has been constant, though: my refusal to call myself “sick” and live squarely in the confines of my limitations.

Until now.

I’ve always been a fairly optimistic person, and when I first started dealing with fibro as a life-constant, I brought that same attitude to my treatment and daily coping techniques.  I can’t say for sure that it made my experience of the pain and other symptoms any different. But somehow, I admit, it felt a bit … virtuous.  As if I was “rising above” the illness.

Lately, however, the illness has risen above me. Risen above, and done a body slam on my ass, keeping me pinned to the mat. Or the bed. Or the couch. Or wherever I end up collapsing at ever-earlier hours of the ay.

A few years into my search for conservative treatments (read: anything other than prescription drugs) I read about something called “Phoenix Rising Yoga Therapy.” I’d been into yoga for a few years at this point, so this appealed to me. The idea, basically, was that a therapist/yoga instructor would work with you one-on-one, while you did yoga asanas (poses), adjusting your body and giving you light massage.

I called and made an appointment, and during our first conversation on the phone, the therapist was explaining her approach. “It’s important that we not go too far too fast, so we have to take this slowly,” she said. This rang all kinds of alarm bells for me. I blurted out, “Yeah, but my goal is to get better. I refuse to accept these limits.”

There was silence on the line.

“Hmm. I’m sure you agree it’s not smart to push yourself.”

I mumbled something like “Yeah, sure.” But the next day I canceled the appointment.  I can’t explain the reaction I had to the woman’s statement. It offended me, as if she were trying to put me in a cell, or something. I know, obviously, that she was just expressing the philosophy of yoga, where it’s not about pushing the envelope but playing at the edge, and not about competition ever, even with yourself.

What I was saying was that I wanted to beat fibro — not just transcend it, but beat it, maybe literally, into the ground.

What she was saying was “this is your reality, and you can transcend it but you can’t beat it.”

And I wasn’t ready to hear it.

It got me wondering today, now that I’m several months into this … this whatever the heck this is — monster flareup? relapse from hell? — I wondered how others felt about it. So I asked the fibro-fab ladies (and one fibro-fab dude)  on Twitter: “Do you honor your limits, or refuse to accept them?”

And here are some of the responses I got, all of which resonate with me deeply:

I tell everyone I know with pain to “listen to your body”, then I go & overextend my limits every time! I’m my own worst enemy.

I used to refuse to accept my limits until I wore myself down to a point where I was bedridden & completely dependent on some1. now I have learned 15 yrs later what my limits are & try to keep within them. Sometimes I push it but for the most part I dont.

I have to honor my limits. If I don’t, I wind up…well, kinda like I’ve been the past few days, totally flaring miserable!

[S]omething in between. I decide just what is worth it and what isn’t. I am not a hero.

More of the keep doing stuff until I fall over the cliff of my limits kinda guy myself. I know there there, but….aaaaaaaahhhh

What about the rest of you? Do you honor your limits or deny and push past them? What effect does it have on your experience of your symptoms?

I don’t know that I have any answers, by the way. I’m still struggling to make sense of this myself. For nine years, I adapted and adjusted and was functional. Then, last year, the rug got pulled out from under me, and I’m still trying to find my footing.

UPDATE: Almost as soon as I posted this, an email from Yoga Journal arrived in my inbox with these almost scarily prescient comments:

Are You Working Too Hard?

As hatha yogis, we work earnestly to find peace through the mind-body connection. The fruits of our practice are a direct result of the quality of our time on the mat, rather than the quantity.

If we allow our ego to lead our practice, we run the risk of overefforting and creating agitation in the mind and injury in the body. If we practice with humble curiosity and compassion for ourselves, then our bodies, breathing, and minds are more likely to become calm and peaceful.

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