#241 Read the spoon theory

 

"I looked her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons..."

Have you heard about the "spoonies" and wondered who they are?

Communicating about chronic pain is an interesting creative challenge to say the least... This is why a description like the spoon theory by Christine Miserandino can change people's lives. Christine had been living with chronic illness since she was 15 years old and was trying to find a way to describe to her best friend what it was really like when she came up with the spoon theory - using spoons to symbolize the amount of energy a person has in one day.

butyoudontlooksick.com

I can't do it justice by writing a short version to fit the format of this blog, so I advice you to click on the link and read the full version. It will change the way you think about health, give you a metaphor for understanding some of the things that are happening to you if you have a chronic illness, and give you an inside understanding of what it's like to live with it if you don't.

#240 Hang out in the shade

Here in Sweden we are already starting to feel the beginning of autumn, but we still have some nice and warm weeks ahead if we're lucky. Living with chronic pain means I have to rest quite a lot and often that means spending all of my time indoors, looking at life passing by outside the windows. A few years ago some good friends bought me this wonderful mayan hammock, which has room for two (we've even been three + a dog at one time!), and which supports my spine perfectly.

When I lived in the forest I would I hang the hammock permanently between two beautiful birch trees overlooking the lake, and I would bring my book and a warm blanket out there and just hang out for hours every day. These days I keep the hammock in my car, so I can drive to a park and hang out there. This way I can be outside, getting fresh air and seeing something else than my bedroom ceiling - while still resting in an ergonomically safe environment that does not provoke more pain.

#239 Have a good comeback ready

One of the extra strains of living with chronic pain is that it's invisible. And somehow, when they hear that we are ill, a lot of people don't know what to say... so they say "But you look good!" and probably mean it as a compliment. Of course when you're in intense pain this feels like a slap in the face, as if they don't believe you when you say that you could hardly manage to hold your toothbrush that morning. In general, people seem to believe that illness that doesn't show is intrinsically questionable.

Feeling misunderstood is something that can lead to isolation. I almost stopped going to lectures after a couple old ladies harassed me for laying down on the tram on my way back from campus one day. I was 22 yrs old, I lived with constant pain and an unstable back fracture and was just trying to get an education.

After living with chronic disease for several years you don't feel the sting of "You look so good" that much anymore, but it still gets to you on a bad day. That's why it's good to have a creative comeback ready the next time you hear it!

For Invisible Illness Awareness Week last year they collected different responses to this classic unwelcome compliment and published 54 ways you say you respond to "But you look so good"

Some classics are:

"Thank you. I’m on my way to the Oscars."
"I’d be great if it wasn’t for the pain."
"I’m not complaining about my looks."


Sometimes its easier to be bitter than to be nice, but I believe that's just spreading the pain and it doesn't help anyone. Physical pain doesn't mean we lose our creativity though... what would your comeback be?

#238 Reach out to someone in pain

As a chronic pain champion you know best how to encourage someone else who is living with pain. This year for Invisible Illness Awareness week (sept 13-19), Lisa Copen has initiated a great project to spread hope and inspiration.

Do you have access to post-it notes and a pen? Great!! You can participate!

Watch this video to see how it works, and visit InvisibleIllnessweek to see some cool examples of how people are reaching out in creative ways. For example, how about leaving a nice note on the windshield of someone parking in a handicap spot?

#237 Three minute workouts

This is one of my favorite ways of reducing pain and staying fit. Apparently it's called "microworkouts"... I try to add several short 3 minute workouts throughout the day to get my blood circulating and keep my muscles happy. If you want some professional instruction and a private trainer right there with you by your desk, you can register for a free subscription to breakpal, where this woman pops up on your screen and brings you through an exercise program (kind of like Harry).

Or just improvise! Very many catchy tunes last around 3 minutes, so crank up the volume and dance, squat or do your favorite aerobic disco moves for as long as the song lasts. If you manage to get your blood pumping it is guaranteed to release endorphins and reduce muscle pain.

#236 Three in one!

Reflexology and foot massage are great for pain relief, but they take so much time!
With these amaaaazing foot massage slippers you can reflexologize your feet while going for a walk or taking a stroll around the house, it's that easy, ZAP! Once they come in bright pink, I'm getting some;)

Combine with a happy feet treatment to really pamper yourself this weekend.

#235 Foot massage

Have you ever had a really good foot massage? You know that great feeling of relaxation and pain relief that comes with it.

If you have a chronic pain condition it may be hard to reach your own feet, but you don't need to buy fancy foot rollers or go to a clinic to get the pain relieving effect of a good foot massage. This video shows how you can give yourself a foot massage using a tennis ball:

#234 Pain relief with reflexology

Reflexology treatment applies pressure to specific points in the feet (and sometimes hands) to stimulate the body's self healing. Sometimes it is quite uncomfortable, but it can have tremendous effect for pain relief.
Read Marisa's account of how she could move her neck for the first time in two years after a reflexology treatment here.

#233 Check out some blog carnivals!

Going to a carnival is always a blast, even when it's an online blog carnival. 365 pain-free days is featured in How To Cope With Pain's monthly blog carnival this month. I love these blog carnivals, they are a great way of finding new information and good writing. I'm really honored to be featured in this one!

Chronic Babe has had a blog carnival about learning to live with pain earlier this year where you will find other great pain blogs and good advice.

Blisstree has a blog carnival about living with chronic pain every august.

#232 Tuck in your chin

Nope, this guy is not pondering what to eat for dinner, he is practicing the wonderful technique of neck retraction...

Many chronic pain conditions lead to a lot of time spent in bed or sitting in a chair, and whether head/neck/back pain was part of your initial pain situation at the onset or not, often they will come as secondary symptoms after some years. A wonderful physiotherapist at (what used to be the only) pain specialist clinic in Oslo, Smerteklinikken at Aker Sykehus, showed me this annoyingly simple neck exercise and to this day it is one of the best things I can do to prevent and reduce neck pain and headaches...

Stand up against a wall and face straight ahead. Gently pull your head back towards the wall, and retract your neck by tucking in your chin. Hold for 5 seconds. Keeping your face level, without looking up or down, relax and let your neck slip forward again, then tuck in your chin again. Repeat five times. 

I also use this when I'm stuck in an uncomfortable sitting position in a car/bus/train/plane to prevent and minimize neck pain. Tuck in my chin, hold, relax, and repeat.

#231 Stand guard at the door of your mind

When I grew up we kids were told that "you are what you eat". As an adult I am made up my own little slogan: "You are what you think". A mind filled with negative thought tends to make a person pretty depressed, and also has a weird way of making him focus on only the negative stuff that happens around him.

Getting anywhere with my healing process has taken extensive work to maintain a positive and optimistic frame of mind. Chronic pain often leads to depression, which only increases the perception of pain. Optimism isn't something I was born with, it was an active choice I took in my teens and have had to work continuously to uphold.

Anthony Robbins talks in "Lessons in Mastery" of how we should "stand guard at the door of our minds", and carefully filter what we allow to enter. Because we can choose our input, but once the information is in there we have to deal with it. I like to think that I have an actual body guard standing guard at the door of my mind, saying "Yup, ok" to things like Hyperbole and a half and "Nope, back off" to things like horror movies and catastrophe news. What kind of information would you like to fill your mind with? What can help you increase the joy in you life? What kind of input is harmful to you, and how can you protect yourself from it?

#230 Forget

I see it as my job to help my body heal. Not holding on to the hurts of the past is one of the best ways I can do that. Amazingly, as a pain patient I have an easier job of this than others, because chronic pain impairs memory! "Membership has it's privileges..."as my friend Teddy would say as we pulled into a free handicap parking spot with my parking card.

Practicing forgiveness and working to maintain a grudge-free life is part of my emotional maintenance, but actually letting go and forgetting comes easier when I stay centered in the now and work on doing my very best where I am. If I spend most of my concentration focusing on the present, there is less left over for mulling about the past.

#229 Forgive

I find that one of the key elements of lightening my load and not picking up extra emotional baggage, is in practicing forgiveness.

From the big hurts of the past, the bus driver who veered off the road and broke my back, the drunk driver that hit me in the zebra crossing, the surgeons who dropped me off the operating table, to a bunch of other not so happy memories. It wouldn't do me the slightest bit of good to blame other people for my misfortune and pain. On the contrary. In order for me to move on with my life and keep improving my health every single day, I need to practice forgiveness in grievances big and small. Otherwise these grievances and hurts will attach themselves to me, fester, grow and contaminate my life to such an extent that it will impede my healing or even increase my pain.

I've learned that the simplest tool for forgiving, is by praying for the person who hurt you (or sincerely wishing that person all the best - if you're not into prayer). If you do that every day for 3 weeks, you will notice your grievances have become considerably weaker, your heart feels lighter and you are allowing more joy to enter your life.

The only person we hurt by holding on to past wrongs is our self. And why hurt yourself more?

For more about the health benefits of forgiving, check this post on WebMD.

#228 Give up your grudges

I have this theory that every time I pick up a grudge, it weighs me down. And seeing as I have a broken back, everything that weighs me down, increases my pain (I actually think that's true for my other pain too...).

A few years of collecting grudges soon builds up to quite a load on my shoulders, and it pollutes my mind and makes it really difficult to enjoy and appreciate the things that are good in my life today. So I take out the trash regularly. If I find that I've picked up a grudge or ten, I choose not to bring them along. Whatever it is that is irritating me, I can usually find some explanation that allows me to let it go. The other person had their reasons, and quite often it has nothing to do with me. Maybe they are under a lot of pressure, maybe they have been through some really tough times? If they did something genuinely hurtful, I am thankful that I have the opportunity to learn from their (bad) example and choose to act differently than they did.

Sometimes it takes quite a lot of adjustment to manage to let something go, cause grudges have a way of sticking, but then again, I realize I may just be projecting. And carrying grudges around is not something I want to waste my energy on, so one way or another, I'm letting them go.

#227 Dealing with doctors: #7 Be patient

Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

(this post is an excerpt of Dr. Rob's "Letter to patients with chronic disease" originally published on his blog Musings of a Distractible Mind. )

#226 Dealing with doctors: #6 Pick your team

Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.

(this post is an excerpt of Dr. Rob's "Letter to patients with chronic disease" originally published on his blog Musings of a Distractible Mind. )

#225 Dealing with doctors: #5 Stay close

Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.

(this post is an excerpt of Dr. Rob's "Letter to patients with chronic disease" originally published on his blog Musings of a Distractible Mind. )

#224 Dealing with doctors: #4 Avoid the ER

Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.

(this post is an excerpt of Dr. Rob's "Letter to patients with chronic disease" originally published on his blog Musings of a Distractible Mind. )

#223 Dealing with doctors: #3 Build trust

Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.

(this post is an excerpt of Dr. Rob's "Letter to patients with chronic disease" originally published on his blog Musings of a Distractible Mind. )

#222 Dealing with doctors: #2 Show respect

Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.

(this post is an excerpt of Dr. Rob's "Letter to patients with chronic disease" originally published on his blog Musings of a Distractible Mind. )

#221 Dealing with doctors: #1 Easy does it

Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.

(this post is an excerpt of Dr. Rob's "Letter to patients with chronic disease" originally published on his blog Musings of a Distractible Mind. )

#220 Don't scare your doctor

Fear or insecurity is a really bad starting point for communication. 

After I realized that doctor's are people too, my life as a professional patient got a lot easier. I've been able to get to know some great human beings - who just happen to be medical professionals - and I've found out that sometimes they say quite intelligent things.

Recently I've started reading doctor's blogs too, and one of my favorites is Dr. Rob's: Musings of a Distractible Mind. Dr. Rob recently published a letter to chronic patients, which was a real eyeopener in many ways, and offering us patients an eerily new perspective. One of the things he writes about is how and why chronic patients scare doctors. I absolutely recommend you to read the whole letter, but I'm also going to repost the specific advice here in several posts as part of the "how to be a professional patient" topic.

#219 Pray

According to patient surveys 90% of patients do it, and doctors believe that those who do have better health and shorter hospital stays. Prayer works well for those who use it as part of their healing process.

While doctors can see that prayer works for those who use it, they have different theories of just how it works.

Harvard scientist Herbert Benson, MD, has conducted studies on prayer for over 30 years. He says that all forms of prayer evoke a relaxation response that quells stress, quiets the body, and promotes healing. These are some of the many other explanations have been offered as to how prayer helps improve health:

• The relaxation response - prayer elicits the relaxation response, which lowers blood pressure and other factors heightened by stress
• Secondary control - prayer releases control to something greater than oneself, which can reduce the stress of needing to be in charge
• The placebo response - prayer can enhance a person's hopes and expectations and that in turn can positively impact health
• Healing presence - prayer can bring a sense of a spiritual or loving presence and alignment with God or an immersion into a universal unconsciousness 
• Positive feelings - prayer can elicit feelings of gratitude, compassion, forgiveness, and hope, all of which are associated with healing and wellness.  
• Mind-body-spirit connection - when prayer uplifts or calms, it inhibits the release of cortisol and other hormones, thus reducing the negative impact of stress on the immune system and promoting healing  

Contrary to popular belief, you don't have to be religious to pray. Being willing to believe in some kind of healing power, whatever you choose to call it, is enough. Many holistic techniques, like reiki, apply prayer in the healing process.

Larry Dossey (MD) had written several great books about using prayer for healing, maybe the best one I've had a chance to check out was Healing Words, The Power of Prayer and the Practice of Medicine. Together with Maggie Oman and the Dalai Lama, Dossey has also contributed to a prayer collection called "Prayers for Healing: 365 Blessings, Poems, & Meditations from Around the World" (needless to say I love the name:).

#217 Swear

What the...

Researchers at Keele University last year published a study that showed swearing reduces pain. Okay, so the pain they were talking about was acute pain brought by submerging hands in ice cold water... not exactly RSD... but still interesting.

In the study volunteer human guinea pigs were told to either repeat a neutral word or a profanity of their choice while their hands were submerged in ice cold water. When swearing, the 67 student volunteers reported less pain and on average endured about 40 seconds longer.

Scientists speculate that this reaction is because swearing triggers an emotional reaction in the brain, thereby triggering the amygdala, aka the part of the brain responsible for triggering the fight/flight mechanism and stress response.

#216 Plan carefully

A professional patient's work is never done, and as life starts gearing up towards the fall there are always lots of issues that need to be dealt with. The mental to-do list is ever growing, and the stress factor and pain levels are sure to follow.

But of course there is another way to get more stuff done with less stress! The "6 most important things I must do tomorrow" is an excellent tool.

The idea is so simple it's almost ridiculous, still this is what nearly doubled the efficiency of a large steel corporation back in the early 1900s, and also earned a man 25.000 dollars in twenty minutes  (in today's money that's approximately 500.000 dollars - you can read the whole story here.)

This is how to use this tool: Every night before you go to bed, write on a piece of paper - exactly - "The six most important things I must do tomorrow"... and you write down the things as they come to you. Not the 36 most important things, not the umpteen things I ought to do, but the six most important things I must do tomorrow. Then you number them according to priority, from most important number one, down to least important.

Each thing should be a complete task, but a doable activity, like paying your bills, answering an important email, scheduling an appointment, planning a meeting etc.

When you start your day, you start doing the first thing on your list, and continue downwards. A day when all six get done is a good day, and you can pat yourself on the back and be very proud. When you don't get them all finished, they may go on tomorrow's list, or you may need to break each activity into smaller tasks. If you get all your things done before lunch, that's a great day, and you can relax in knowing that you've got it covered.

Do this every day for two weeks, and you will be amazed at how you manage to get on top of things and how much more efficient you are.

Happy planning!

#215 Stay in the now

I can be really good at predicting the future. In just a few minutes I can have thought out 500 different things that may or may not happen in the years to come... and some of them are even good things!

Often my predictions seem to center round things that can go wrong though... It's an entertaining game, as in: "What kind of problems may I be facing in the future?" Some people call this catastrophe thinking, while my inner skeptic calls it being prepared.

A few weeks ago I was elaborating on some of my fanciful "What can go wrong?" scenarios with a friend, who was silent for a while before she cut me off and said: "When I get stuck in that kind of thinking I say to myself "Where are your feet?"

That really got my attention, and as I tried to figure out what her feet had to do with any of my problems she continued "Then I look down at my feet...

...and I describe where my feet are. Like... right now they are in the grass, under a table, on a lawn, in Erin's garden..." ( I started doing the same as she was talking) "... and then, when I'm totally focused on where my feet are, I ask myself  "What's the next right action?"
"What do you mean, the next right action? I asked.
"You know, just what is the next thing I should do right now. Like, go help out with dinner, or put some sunscreen on. In that situation, I just need to get out of my head and into the now, so I focus on my feet first, bring my attention to where I am, and then I think about what I can do to be helpful to the people around me - right now."

That shut me up for a while... I tried it the next time I found myself swept away into a stream of unconstructive thought processes, and guess what? It worked like a charm!

#214 Rap about it

Extended hospital stays are often also part of the professional patient lifestyle. Here's what Christiaan aka "The Sick Rapper" did when he was placed in quarantine with TB and a hole in his lung...





Apparently Christiaan had no experience with rapping when he got sick, but when he had to stay 6 months in quarantine he started experimenting and made several really funny rap videos... after getting out of hospital four weeks ago he left his old day job to start work in the music industry. Talk about turning challenges around! Chronically inspiring if you ask me:)

#213 Carry your meds in style

Having to take a fistful of pills several times a day is a part of the professional patient job description, but how many times do you get weird looks when people see the amounts of prescription medication you carry around with you? These days, most of the pills I take are vitamins, but it doesn't really make a difference.

Choosing to improve the possibility for getting a laugh out of this, I found this awesome travel case for my meds online.

...and a matching pill box for carrying in your purse or pocket... I hope they ship to Scandinavia!

#212 Join Harry for some chair aerobics

If you're stuck in front of a computer, try this for some smile-inducing, circulation-improving natural pain relief!



Thanks to fibro chick for introducing me to Harry and putting a smile on my face today!

#211 Tell it like it is

Cartoon by Natalie Dee

Communicating about pain can be painful in itself. What we talk about and how we talk about it defines who we are, so not wanting to be defined by our health issues we may choose to put on a brave face. In very many cases I choose to not talk about it, and I was amazed to learn that the bad feeling I often get talking about our pain may be because talking about pain activates the pain centers in the brain, actually intensifying the nerve signals!

A Norwegian study published in 2005 showed that out of 74 patients suffering chronic pain because of a rheumatic condition "practically everyone said they «understated» their troubles and pains, because they did not want to be looked upon as a person always «complaining and whimpering» "

But there are several situations when talking about it is absolutely necessary. Until I learned how I could be friendly and positive while still talking seriously about pain, I used to believe that I should always be cheerful when seeing a doctor. I'm a cheerful and positive person! Of course they got a completely tilted images of how well I was functioning, and so for a long time my treatment was insufficient and largely unhelpful. Telling it like it is, without breaking down in tears in the doctor's office, takes some preparation and practice. But everyone can learn how to communicate constructively about pain, one of the best ways I've found is by keeping a pain journal.

Also to maintain good relationships with family and friends it's important to tell it like it is sometimes. It took me many years to understand that how much I was limited by pain was completely invisible to everyone else. I had to set aside time to explain, and I learned to tell my friends how I function at different stages of the pain scale - to allow them to know, communicate constructively and have understanding and sympathy without having to dwell on the negative aspects of pain constantly.

But you also need a safe place to be vent, and be absolutely honest about how awful you feel sometimes. The best place for this is with a counsellor or in a support group. I believe that if you have established routines and safe spaces that let you communicate openly about your pain, you don't have to share the sad stuff with everyone else and it's easier to focus on stuff that is more uplifting.... like.. ice cream!?

#210 An interesting mind-body model

This video takes a really complex issue and describes it quite well. What Dr. Howard Schubiner (MD) calls "The Mind Body Syndrome" is talked about in many different ways. I have heard and read so many different versions of this theory, and this talk is quite a good introduction to the common idea: that how we feel unconsciously affects our physical health.

Check it out:)

#209 Learn more about how pain works

While you're chilling out - watch this short video to learn more about how pain signals travel, and how pain works.



I know the term "it's all in your head" is hateful to many pain patients, because it can be used to imply that you're making it up. No. That's not what I'm saying. The pain you are feeling is absolutely real. But no matter the reason for physical pain, the actual pain perception is located in the brain. I see this as a great opportunity, because I believe it gives us more alternatives to treat and prevent it.

#208 Chill Out

 

Summertime and holidays are great, but being a professional patient is kind of an all-time deal. You don't get holidays from chronic disease. My pain management techniques are always a big part of my life where ever I am, but they do change slightly according to the season. This summer I've been dealing with intense heat and I've realized that adjusting my activity and expectations to the temperature is a difficult task.

Many people who suffer from chronic pain are strongly affected by heat. Some kinds of pain gets better, while others gets worse when the temperature rises. Many inflammatory conditions worsen with heat, and also headaches and migraines. For muscloskeletal conditions, anything that improves circulation often relieves pain. So switching between hot and cold may bring quick relief. 

Keeping your head cool and chilling out is especially important if you have a chronic condition. This means staying in the shade, inside with A/C if applicable, drinking enough fluids and maybe taking cold showers. But most of all it's important to give yourself a break. Don't plan too much action in one day, relax, take it easy. If there is a lot going on around you, plan breaks during the day, where you retreat and have time all to yourself to recoup and stabilize so your pain doesn't spiral out of control.

Place an ice pack on your neck, have a big glass of cool lemonade and don't feel bad about doing nothing.

Weddings and family fun

I've been in New York celebrating my brother's wedding this weekend, it was terrific fun and very touching - they'd written this awesome speech/sketch they performed as part of the ceremony that just had us all laughing and crying...

...and in tune with my last few blog entries, I promise you I was doing a whole lot of dancing at the wedding!

Then the flight back to Sweden, some minor jet lag issues (plus ouch, back pain), and now Samuel and I are relaxing with family in the forest... I am spending my time swimming in the lake, picking berries, playing with my nieces and generally having a great time.

And that means that the blog is taking a short summer holiday! I've decided taking care of myself and enjoying some downtime is more important that blog-publishing every single day, even though I am writing 365 tips in 365 days:)

So, see you all on Monday next week, and hope you're all having a great summer too!