#365 Make gradual changes



When you allow yourself to begin dreaming of a healthy, pain-free future and start setting goals, it's easy to get carried away.


"This year I'm gonna get in shape, lose 30 pounds, get well and get a great life" for example, is an oh so common New Years resolution that doesn't lead to much other than a really bad conscience, a sneaking feeling of failure and a lowered sense of accomplishment.

Some smart person once said that "Rome wasn't built in a day" ... I'd like to say that neither is a healthy life and a pain-free body.

The best way to accomplish a better life is by making gradual changes. My mentors Marcus and Stefan at Universe Imagine recommend breaking up a larger goal (like "having a healthy life") into smaller parts and specific activities, and then focusing on making one small change every week.

On my way to a healthy and mostly pain-free life I must have made hundreds of changes, and none of them have been hugely dramatic. People keep asking me what I've done to get so well, and when I say that there hasn't been any one specific superfantastic mega-miracle drug or treatment that suddenly cured my chronic pain, but rather the combination of all the little things I've learned to do... that seems to open people's eyes to the impact of making gradual changes.

I could never have gotten to where I am today if I hadn't kept on believing it was possible, feeding my dream and slowly but steadily doing the little things that led me in the right direction. That's why I've chosen to let "Make gradual changes" be my


pain-free tip number 365!!


.... wow... 

The blog project is done... 

time to celebrate!!!

#364 Start a blog

 
Hoorray! Around this time last year I had an excellent idea.... Why not start a blog where I write about everything I'd learned from living with - and to quite some extent overcoming - chronic pain? I'd thought about how to share all my pain relief techniques in a simple and inspiring way, but couldn't really come up with how until I put two and two together... Navid Modiri's super inspiring swedish blog 365 saker du kan göra (in english: 365 things you can do) became the template for my looooong lists of pain reducing and preventing activities, and after 15 minutes on blogger.com, *swish swoosh, clickety-click* I had started a blog called 365 pain-free days.

Little did I know what it would lead to!!! Now, 50.000 readers, one published book and a big blog grant later, I am still struggling with chronic pain, but I have learned so much!! I have new friends from all over the world and I have put my blog writing to new use by starting a slightly more political and less personal Norwegian blog where I work to inspire change within the health care system.

There are many great blogs run by healing heroes, patients and spoonies around the world. Each blog has it's audience. Blogging is a way to connect, communicate, focus on something else than illness and pain, empower yourself and help others. When you first start up, maybe the only readers are your close family and a few others, but connecting online can be a great way to break the isolation of living with chronic illness, so why not start your own blog today?

#363 Get organized

One of the dangers of chronic illness is that it gradually isolates the person who is suffering. When you hardly have strength to manage the minimum of necessary activities, and frequently have to cut back and cancel plans, it's sort of like living in a bubble. You lose touch with the outside world. That's why joining a patient organization is extremely important.

A good patient organization is almost like a trade union. It fights for the interest of it's members in all possible arenas, it works politically, supports scientific research, participates in medical conferences, spreads information about the ailments it represents, organizes lectures for health care workers and support groups for patients and caretakers. But in a big organization the personal contact may be lost.

Personally I have a variety of painful conditions, so at last count I qualified for membership in at least eight different patient organizations. Obviously I can't participate in all of these, so I have chosen two which I believe are able to represent my interests in the best possible way. I am not a very active member, but when I need help, I know where to call. In some cases, the organization which represents your diagnosis most specifically may not be the best one for you. They may have a policy or understanding of your disease or treatment that you don't agree with, or it may be a question of personal chemistry. Don't be afraid to see beyond your diagnosis when choosing what organization to join.
 
Because the chronic pain community in Norway is still relatively small and we seem to be way behind other countries when it comes to research and understanding of chronic pain, I have joined an American organization for chronic pain patients, the US Pain Foundation (which used to be called CT Pain Foundation). They are superb when it comes to providing a caring support network with people who really understand the challenges of living with chronic pain.

In Norway I have chosen Revmatikerforbundet, a strong organization that works very professionally to represent the interests of people with all kinds of rheumatic disease. They have a quite high yearly membership fee, but as I say, they function like a trade union and they are extremely effective in representing and fighting for their members politically, so they are more than worth the fee.

The US Pain Foundation is a non profit that has no fees for membership, so if you suffer from chronic pain I absolutely advice you to join their facebook group and follow their e-newsletter.

The combination of having one large organization that represents me politically and one interest group with individuals I can relate to is a good solution for me, and means my needs are met.

How about you? Where can you find the support you need, and who will fight for your rights when you are too weak?

#362 Have a goal



As you may already have noticed in the previous 361 posts, I'm a big fan of goals. Setting them, working for them, forgetting about them and then discovering that I'm actually still moving towards them... I like goals.

When it comes to healing, I don't find typical goals very attractive. If my doctors say that it should be my goal to avoid any more back surgery for example, or they say it's a goal to gradually reduce my use of cortisone or to gradually attain a better level of joint functioning with less inflammation, those aren't really goals that inspire me or help me forward. They all feel kind of negative.

But when my third back surgeon told me I could drive a motorcycle again once the surgery had healed, THAT gave me an inspiring goal. I decided to do everything I could to get in great shape, so I could at some point in the future do something I really enjoy doing - driving a motorcycle.

Now I use goals all the time. Not large and fuzzy "I want to have a great life" or "I want to be healthy" goals, but quite specific goals for where I want to be and what I want to have in my life in say 3, 5 or 10 years time. When making decisions I analyze my alternatives according to how they are helping me move towards my goals.

One of the bigger goals that has helped me a lot is "I have a life where my health doesn't stop me from doing what I want". This goal inspires me on many levels, and obviously I can reach it both by changing what I want (I no longer want to be able to lift very heavy things), organizing my life so that I adapt my activities to my health, or by becoming 100% well. Somehow these things seem interrelated...

This time of year seems especially good for setting goals, reviewing and evaluating the year that has passed and thinking about where we want to be and in what kind of situation we want to be next year.

The trick is to dare to set a goal without knowing exactly how you are going to be able to reach it.
Set the goal, and start doing little things that take you in the right direction, and the road will become clearer as you go along. Or as Mr. King said:

"Take the first step in faith. You don't have to see the whole staircase, just take the first step."
Martin Luther King, Jr.

#361 Retrain your brain


When I started to grasp the concept of neuroplasticity it shook my world. The brain can change structure? We can grow new brain cells all through life?! In school I was taught that after childhood the brain basically stayed the same, all that happened was that you started losing gray matter at an alarming rate if your were lucky enough to survive puberty. Newer brain science has changed these theories completely.

Now, as a chronic pain patient, I am especially interested in research in neurology and how the brain functions, as any new knowledge concerning the workings of the central nervous system is bound to lead to better treatment for chronic pain.

The little I have learned so far has given me a potentially hazardous optimism on behalf of my ability to change the way my brain works - I am constantly implementing my knowledge and understanding in an effort to minimize the experience of pain and gain best function and quality of life.

For example I have understood that the brain's connector cables - the neurons, or axons - are built according to how we use our brains, and can even be affected by our repeated thought patterns. Connections that are used often are built gradually stronger and faster, like information superhighways for nerve signals.

So when I suffer from chronic pain it's not strange that my nerves are sensitized. The same pain signal is felt stronger and stronger, because it gets a gradually better connection to my central nervous system the more often it is used. I believe my best bet is not to try to subdue the nerve signals with drugs, but to change the way I use both my body and my brain. I do this to build other connections in my nervous system, distract from the pain signals, minimize the pain's nerve connections and also increase my brains natural production of feel good chemicals like serotonin, endorphins and dopamine.

Retraining my brain to minimize pain is a way of life. There's no magic on/off button, it's a gradual process that begins with my belief that it's possible, followed by a willingness to try unconventional methods and then a sustained effort to change both the way I think, speak and behave.

That being said, I am very positive to neurofeedback treatment, especially LENS neurofeedback, as I hope to be able to write more about in the future.

#360 Go on a photo safari


I like visual aids. When I want to improve my mood, I always try to look for what's beautiful around me. Even when my surroundings are dull, dreary or straight out ugly, it's always possible to find something colorful, pretty or fascinating to look at.

With a small digital camera or a good camera cell phone I am always ready to document the beauty that surrounds me and I can even capture it and bring it home! Just as I try to remember to document good days to keep my happy memories vivid, these pictures captured on my various photo safaris can be a great support as I go through pain flares and longer periods home bound because of chronic pain.

I only recently read that images of nature have been proved to provide pain relief, but this must be something I've known intuitively. I have a whole folder just with pictures of the sky, and another one with trees during different seasons. The smallest, presumably insignificant, things can be tremendously beautiful if captured up close and lifted out of their context. When brought home to my hard disc, these images can serve as reminders of the wonderful world around me - and function as safe mood enhancers when I'm going through a bad pain phase.

#359 Be good to others


It's not about the big expensive presents or the extravagant displays of affection. Good relationships in love, family and friendship all require a lot of maintenance - and I like to think that the small things count the most. Getting a cup of tea for someone, really listening, being attentive to how others are doing, volunteering to lend a hand when I am physically able, and saying thank you when people do things for me... all these things are a way to take responsibility for my social environment and my relationships.

This time of year can involve rather a lot of family obligations and it's easy to get carried away in the stress and drama, which often has a tinge of emotional baggage because of things that happened or didn't happen long ago. That's when it's especially important to take responsibility for ones own emotional stability to not start spreading gruff or acting out based on bad feelings.

Living with chronic illness is bound to place a strain on any family, and yes, it's important to talk about things, but there's a time and a place for everything. If I get upset during a family holiday, I try to take a break all by myself to put things in perspective and focus on how I can be useful and add something positive to the situation instead of acting out.

#358 Give out free hugs at the hospital


I had a theory that hugs were good for pain relief, and I wanted to spread some smiles to people visiting the very large and very sad Ullevål hospital in Oslo. So I took my best "feel good" clothes and my stuffed penguin Pongo, put signs around our necks that said "Free Hugs" (Pongo's actually read "I'm cold" it was -20 degrees celsius that day and even penguins have their limits) and made my way to the hospital.

There we were welcomed with open arms by the chief of security, and told to leave immediately (because we had a camera, I'm sure if you want to hand out hugs without filming this would be ok).

So we took our project to the nearby University campus and tested our theory there. For 20 minutes I hugged randomly passing people who wanted a hug, and what do you know, quite a few people started smiling and laughing, many got a hug and went on with their day, and for each hug I gave I felt a LOT better afterwards! At the end of the experiment, my back pain was down from 7 to 2 on the VAS scale. Maybe it was the endorphins, I don't know. But it worked and it was free:)

So with that I wish you all a Merry Christmas and Happy Midwinter, may you give and get many pain-relieving hugs in the Holidays this year!

#357 Make new traditions


I admit it. My family is culturally challenged. When my Norwegian Mom and British Dad divorced and remarried our family grew by leaps and bounds. I now have four parents, 6 siblings and a wonderful family spread across the globe from Kuala Lumpur to Rio and Sacramento. I love my American siblings very much, and seeing as they are reformed Jews it's completely understandable that they are not as much into the whole Jesus thing as my boyfriend's family - who are Swedish priests and theologians.

We found out quite early that we had to make our own traditions during the holiday season, and now I see this has a definite pain-reducing potential.

We can make new traditions that are healthy and spoon efficient!

Mixing a little old Nordic midwinter celebration with Hanukkah and English Christmas may sound like blasphemy (sorry in-laws!) but it works for us. To take care of my health, I need a lot of downtime during the holidays, so I throw in the occasional PJ day and some very relaxed holiday rituals that don't require a lot of stress or traveling. Nice music, candles, long lunches, stockings with presents and a walk in the forest. Those are some of the things I've decided are the most important holiday traditions for me now.

#356 Have a pajama party


And.... if the stress of holiday planning just gets too heavy and your pain spirals out of control, it's never too late to redress, replan and reboot.

If you have to cancel all plans because of a pain flare it's not the end of the world. Decide to make it into a self nurturing feel-good day. Bring out your flare kit, Christmas cookies and your favorite PJs, and have a stay at home pajama party instead of going out.

#355 Share the load... or delegate

Comic by Natalie Dee

Comic by Natalie De
Once you've divided up what needs to be done, it's way easier to ask for help and share the work to get things done.

Rather than collaborating with anxiety girl and the masked procrastinator... When I've made my plan for a pain-free holiday season I can also state clearly what I can do, and what I need other people to do.

Transportation? I can pack my bag and drive the car, but I can't lift or carry anything, I'll ask Samuel or my brother to do that. Christmas dinner? I can buy some of the ingredients, set the table and read for the kids while the others work in the kitchen.

Being clear about what I can do and what I need others to do prevents a build up of pain-increasing stress.

#354 Divide and conquer


Do you know how to eat an elephant? Right. One bite at a time.

It's the same way with stressing holiday projects and worrisome healing projects. If an idea or task is so big - and your strength so depleted - that you can't imagine how you're ever going to manage... break it up.

Divide the task into smaller more manageable chunks and plan which need to be done first and which can wait till later. For example now with my moving, I've had to use this way of thinking all the time. The whole idea of moving midwinter (my worst time for pain) seems pretty stupid right now, but no regrets. It will turn out great. I divide the huge and intimidating "MOVING" project into different parts, and each of those into smaller parts and each of those into lists of activities. Today all I need to do is paint a wall and make a phone call, and I'm still on track.

If I'm really tired and can only do one thing a day, that's still a whole lot more than nothing, and if I keep doing things that lead in the right direction I'll get there in time.

#353 No regrets

Some things you can change, some things you can't. If your health problems are chronic, there may be a lot of things in the past that you'd like to change. I find this way of thinking only drains me, and instead of mulling over past accidents, failed treatments and mistakes, I continuously renew my decision to learn from them and move on.

"Though no one can go back and make a brand new start, 
anyone can start from now and make a brand new end."

#352 Evaluate and move on


I choose to use the holiday season and New Year especially as a time for reflection, where I choose which parts of my life I'm happy with, which I'd like to improve, and which I'd like to change or remove from my life. Then I make a plan for how I want things to be, and I make a conscious decision to move on. Working with project management I've learned this simple way to review and evaluate which works really well in my life as a professional patient as well.

I timebox 10-15 minutes (more than that and it just gets circular)... and sit down with a piece of paper, a bunch of post-it notes and a pen.

On the piece of paper I write the topic I am evaluating as a header, and divide it into two columns, + / - or "Happy with" / "Can get better". Now the topic could be something as broad as "the year 2010" or as specific as "My physiotherapy treatment".

Then I spend the first 5 minutes writing down everything I'm happy with about the chosen topic. Every little thing is written on a separate post-it.

After 5 minutes exactly I break it off, and start a new 5 minutes where I write down everything I'm not happy with or would want to improve, still on separate post its.

Next I collect all the little post its and place them in their respective columns, the ones I rank most important first, and gradually less important further down in each column.

At this point I have completed my review, and it's very interesting to get all the different thoughts and reflections out on paper. Based on the stuff that has surfaced I'm usually in a much better position to choose what I want to stick to, work on, improve, or leave behind, and I'm ready to take action and move on into the next phase.

Ps: Holiday season is also a good time to lighten your load.. I've written more about this in these posts: give up your grudges, forgive and forget.

#351 Patch it



Pain patches are really great for localized pain. Just like a big band aid, but with pharmaceutical or natural remedy components in the patch, you can place it on the area that hurts and get pain relief just in the exact area of the pain. For your digestion and liver this may be better than pills.

I don't want to recommend any special brand here, but advice you to try patches that use your "drug of choice" or substances that you have tried and know that you get good pain relieving effect from, whether it be ibuprofen, capsicum or something else entirely.

I wonder if it would work if I tape pieces of dark chocolate to my back when it hurts.... Doesn't that count as both a natural remedy and a creative healing solution? Hmmm, nope. I think I'd better just eat those;)

#350 Simplify

Life is much simpler in Flow Chart format... illustration from the brilliant XKCD

When life is very complicated I tend to become quite stressed. When I become stressed, my pain usually gets worse. A good way for me to prevent this from spiraling, is to sit down and start pruning away non-necessities.


These days I've been pretty strung out, with the book launch, new blog project and big move all at the same time, healthier people than I would have trouble. I'm hanging in there, sort of... but the problem is, I'm spending energy I need in order to make it through the winter. So I need to cut back and prioritize quite harshly in order to take care of myself.

When I'm really tired, even the simplest tasks seem completely impossible and my mind is muddled with endless lists... If I catch myself falling into that "I have to do EVERYTHING and I have to do it NOW!" frenzy, I sit down and make a mind map with all the things worrying me. When I get them down on paper, they're usually not as many or as urgent as I think. So I check which of them I really need to do something about, and which of them I really need to do something about today. At that point I'm usually left with only one or two things, and it's all quite manageable...

#349 Vent your frustration



When the pain monsters are having a party in your neural pathways and driving you nuts... it's perfectly ok to be angry and frustrated.

Don't hold it in, that definitely won't help your pain, but try to avoid taking it out on people around you. Instead of snarling bitter and sarcastic comments when I'm actually just hurting, I can punch or kick a pillow with whatever part of my body that isn't hurting or find a secluded spot where I can vent my frustration with a well pitched howl.

As an alternative... if you get tempted to vent your frustration in chat rooms and forums, try this (slightly gross, be warned) online game first: Wack a bunny... then when you've vented the worst anger you may be able to say something you won't regret later.

#348 Ooops!? Beware of side effects...



Did you know that memory loss is a common side effect of living with chronic pain? In a study performed in 2004, people living with chronic back pain were shown to suffer significantly greater loss of brain cells in the part of the brain dedicated to memory than healthy people. The researchers said it could be because the brain cells were under constant stress and working overtime in people living with chronic pain. I only heard about this research earlier this year, and I've got to say it explains a few things...

Like how I have trouble remembering the simplest things... I need to write everything down and even then stuff slides out of my head like on a non-stick frying pan. I just thought I was getting stupid in my, ehem, not so old age... but no, apparently it's perfectly normal. It would have been relieving if my doctor had told me about this, cause I thought I was losing my marbles there for a while. I have good phases and bad phases with this just like with the pain, and stress is a major contributing factor.

Many people find it depressing to hear about this kind of research, but I see it as an important tool for taking care of my health. The more I know about my condition/s, the more I can adapt and take precautions to minimize their impact. Now I can try memory training, and eat foods or supplements that are supposedly good for my brain. I can make sure to write lists and color code stuff,

#347 Ask for music


Remember when we used to make mixtapes to people we liked, and send them in the mail - as in... put them in an envelope and send them? These days people mostly send youtube links, chain emails and maybe share the occasional spotify playlist...

But listening to music can help relieve chronic pain- which is awesome, cause it's something you can do even when the pain is so bad that you can't actually do very much at all. Music can be used both for distraction, relaxation and to help soothe the stress response that usually comes with a pain flare up, so it should be a part of every patient's flare kit.

Whether it's a happy dance mix or a collection of blue songs, for me a big part of the experience when listening to music is associating it with memories of people I've shared that music with. Music is a way to connect and experience - even when your body is not functioning.

Oftentimes friends and relatives of pain patients don't know how they can help or assist the person who is suffering, and they may come with all kinds of advice for things you should or shouldn't do, which is rarely a help, and quite often a burden. So my best pain reducing Christmas gift tip this year is to ask for music. Tell your friends and family that you'd love a CD/tape/playlist with personalized musical medicine for your flare kit this year.

(PS I find it can help me through a pain flare to combine listening to a personalized musical medicine mixtape with running a screensaver with pictures I've taken while documenting good days. The combination helps me remember that there's more to life than pain even while I'm going through a bad flare)

#346 Make your own Christmas prezzies


Another way to avoid the rampant consumerism and pain-inducing shopping stress during the holiday season is to make your own presents. Some home made cookies, a jar of jam or preserves, a beautiful card or photo calendar. Why spend time and money on buying and giving more stuff to people you love if their homes are already full of things? Have a "Santa's workshop" and prepare some homemade prezzies instead. Tasty home made delicacies are a guaranteed winner, and they don't need to take ages to make. Look for ideas online or check out your local library for books with recipes and ideas.

#345 Support Fair Trade



When planning to spend a chunk of money for presents (it's kind of hard to give experiences to everyone), why not make the world a better place at the same time? After all, if you have money - that means you have the power to change things!

Instead of buying yet another silk tie for Dad, maybe he'd like a flashy fair trade certified T-shirt in organic cotton?


Look for this brand 

It has to be the best spirit of giving for Christmas, to buy things that ensure that the people who produce our goods also get good wages and help to build sustainable communities, hooray for Fair Trade!

#344 Give experiences

The coolest present I ever received was from my awesome little sister Lynnea (of the infamous Squid Ink Kollective). The present consisted of a looooong ribbon, attached to a card which read:

"This is a gift card for 1 -one- experience.

It then stated a time an a place when I was to meet up to go on a "mystery tour".

I had happy butterflies in my stomach for ten days before the mystery tour, and that day I was picked up at said location and brought out to dinner (sushi, yum yum). After dinner we got back in the car, several other of my friends were surprisingly picked up along the way, and everybody seemed to know something I didn't... finally we ended up outside a suspicious little house in the outskirts of Oslo, were wrapped in thick woolen blankets and entered a candle-lit mausoleum (the Vigeland mausoleum!) where there was - of all the strangest things - a didgeridoo concert!!!

This must be one of the most exotic experiences of my life, and it will be happy memory for as long as I have brain cells to recall it. Unlike other gifts and trinkets, a gift like this can't break, won't need to be dusted, stored or taken care of, and will keep providing both recipient and donor with joy long after it was given.

#343 Weed out resistance



Is something or someone bugging you immensely? Is that feeling of annoyance creeping into your life in a way that is determimental to your health and well-being? Then I have some really bad news for you.
You're the one who has to change.

"What you resist, persists." Apparently some great psychoanalyst said it, and it has to do with thinking patterns. You can't NOT think about pain for example - especially when it hurts all the time. But thinking about it actually activates the same neural pathways that the pain uses, so it intensifies the pain experience! That's why thinking about pain, increases pain. What you can do is to make a conscious effort to think about something else.

So resisting pain and fighting pain are actually not tools you can use to get rid of pain.

I implement this in my daily life by observing my thoughts. If I get stuck in a negative rut I break my state by doing a little happy dance, and quickly follow up by substituting my negative thoughts for more constructive ones. I make a mental effort to think about things that make me happy, and actively search for things that are beautiful and uplifting in my surroundings.

Maybe I've been so stuck in my pain and worries that I'm not even aware of my surroundings? Maybe I need to check where my feet are and center myself. "Oh, I'm in the kitchen!!" Then I think of something practical I can do. Like the dishes... or ... making a cup of tea! That way I break my negative state, and by repeating this technique I am gradually exchanging my resistance and annoyance with practical action - with great benefit both to my emotional well being and my physical health.

#342 Walking meditation


Walking mindfully is a method I've used to reconnect with my body and start rebuilding it after years of chronic pain and injuries. Simply walking, very very slowly, preferably barefoot or in socks or soft shoes, feeling the ground underneath me with every step.

It feels like I can apply all those tiny muscles that otherwise wither away when I'm sick and out of action for longer periods of time. The important supportive muscle tissue around my spine and joints especially. I breathe slowly and and focus on each and every small movement, rediscovering "lost" parts of my body by turning my attention solely to the movement. When I am fully focused, I try closing my eyes while continuing to walk slowly forward, this makes it easier to connect with the muscles and work on my balance.

If I'm stressed or out of balance emotionally that shows immediately when I try walking slowly and close my eyes. My physical balance is off too! But after a few minutes of continued effort, slow breathing and gentle movements I can usually pull myself back to center and feel much calmer. That affects my experience of pain quite immediately.

I usually prefer to do this indoors, but if you have a garden or law that's even better. You don't need a lot of space, the goal is not to get anywhere fast. With very small and slow steps you can get great effect just by walking a few yards back and forth. Happy walking:)

#341 Enjoy what you've got


Sometimes it's the little things that matter the most. The race for a future happiness is one it's impossible to win because however much I get, there's always something else on the horizon. The new apartment, the new back surgery, the better car, better job.... If I chase that stuff I will never be able to stop running, so today I choose to stop chasing and just lay down and smell the flowers instead. This way I can try to add small nuggets of joy to my life by appreciating what I've already got.

#340 Decorate a healing corner


It shouldn't really come as a surprise that the outer environment has a direct effect on healing, but hooray, somebody has conducted a study that proves it.

So how do you apply that knowledge to your private self-healing routine?

I mean, it would be wonderful if we all had access to beautiful gardens like this one, had a gardener who could do all the work tending it when we were too sick, and could spend several hours there daily just soaking up the sunlight and getting gentle exercise...
...but most of us don't really have that option.

So I propose decorating a healing corner in your home. Choose a spot where you can see something beautiful, and place your day bed, hospital bed or relaxing comfy chair there. If you can't spare a good window position,  put a beautiful nature picture on the wall by your bed/chair. Decorate the corner with a few small things that cheer you up and keep it peacefully clutter free. Place your flare kit nearby, and any other props that help your pain. Then you can designate the whole area as a healing zone, when you are there you do your best to focus on self care, relaxation and calm.

PS: If this topic interests you, you can check out this book: Healing Spaces: The Science of Place and Well-Being, where neuroendocrine immunologist Esther Sternberg aparently "gives scientific evidence to support the notion that where you heal has an impact on how well and how fast you heal." :)

#339 Collect encouragement



This was actually a tip from a career counsellor, but I've found it works great for professional patients as well. If you've been living with chronic pain for a while, it can be a tough strain on your self worth. You can't do the things you used to, relationships suffer when you don't have time or energy to participate the way you could if you were healthy. It's easy to start feeling pretty bad about yourself after a while, and that doesn't exactly help your health.

In a situation like this it's especially important to supply yourself with encouragement, and take good care of the positive input that you get.

"You're such a good listener!" Sometimes people say nice things about you. It could be in an sms, on a card, in an email or face to face. It is heartwarming then and there, but in the day to day living with a chronic pain condition, we soon forget who said what, when and why. Today's pain-free tip is to try to preserve compliments and pieces of encouragement in some way, write them down if possible. You can have a secret place where you collect uplifting messages. A drawer for cards and notes, maybe a document where you copy&paste in nice things from emails. That way you can remind yourself... bring them out when you've had a bad flare or if you start to forget who you are apart from your illness.

#338 Make a movie of a bad day




The days we are at home and can do very little because of chronic pain, are usually invisible to everyone else. Often even our loved ones don't get to see what's going on, it's almost like that time doesn't even exist.

I've found it's hard to find strength to get better, if I'm not even validating my pain and my dark days. A few years back I started using my digital camera to make small movies, and one day I filmed myself  on a bad day. Seeing that clip later was actually extremely enlightening, because I could see the pain's impact on myself in a way I had never seen before.

And when I compared the video of me on a bad day, with something I had filmed on a good day, the difference was astounding.

I could hardly recognize myself, my voice, my face... everything. I had just filmed a really small dialogue with myself, and it was honest, since I wasn't making it for anyone else. I was just saying how I really wanted to go outside but was hurting like hell, and was wondering how I was going to make it through that day. Maybe 50 seconds long. That film showed me the impact of my chronic pain, and helped me validate it. It was something of a breakthrough experience on my way to healing.

#337 Make a movie of a good day



Do you have a webcamera, a cell phone camera, or a small digital camera? Great! Then you can make a movie!!!

You don't even need video editing software, but if you have that on your computer (macs come with software that makes it really easy to edit film, for PCs there are lots of simple shareware options to choose from)

Film yourself on a good day. Maybe a well functioning low pain day, or a day when you are for some reason practically pain-free (pigs can fly, right?). Include some footage of stuff that makes you happy, try to include some different sounds, people and colors and tell yourself how it feels that day. It doesn't have to be "good" or have any kind of professional quality, just have fun, You're doing this for you!

The film will be really interesting to watch later... especially when you compare it to... #338

#335 Define yourself: You are not your illness



Diagnoses are great. They give our aches, pains and unexplainable but very scary symptoms a nice name (preferably in Latin, so we don't understand) and make them easier to accept. Living with chronic illness means you probably have one or many diagnoses, and every time you need medical help you get help for your diagnoses - not for you. The name of my illness provides a much-needed distance between ME and the PROBLEM.

The diagnosis is like a badge. The doctor gives it to you and you stick it on your chest, or forehead, or chuck it in the trash can... wherever you like. If you don't get a diagnosis, chances are you won't get any help either, so you have to keep working to get one because however sick you are, you aren't "really" sick until somebody has pinned your disease down and given it a name.

This is one of the situations where there's a humongous difference between acute and chronic illness. An acute diagnosis is very useful, you wear the badge for a while, and then you get well and remove the badge - chuck the diagnosis out. You're well. But very many people today live with chronic diagnoses - they may stick with us our entire life. Then it becomes essential to define yourself apart from your disease.

Who are you, really? Who are you without the symptoms, without the definitions, hospital visits and pill boxes? Who are you as a person, not as a patient?

To achieve building a healthy and well functioning life despite chronic illness, I've spent time building my "healthy" identity. I have certain friends that I never discuss health issues with, I plan activities that help me feel healthy. I label myself healthy as often as I can, because... I AM. I mean... I don't have the flu or anything, my condition is stable. I may have pain, but I feel healthy!

This interesting dilemma: "diagnosis and identity" is the background for choice of name of my new Norwegian blog (yes the one featured in my "Good News!" a few weeks back) which opens today at www.diagnostisert.no.

#334 Impulse shop in the produce aisle


Impulse shopping is fun, but can get expensive if one does it at the wrong place. Impulse shopping in the produce aisle on the other hand is completely harmless, stimulates cooking creativity and is even fun when you're on a budget.

I wonder what that red spiky thingy is...? And would it taste good in a smoothie? Or in a curry sauce with cashew nuts and rice? Maybe both?

Sometimes my private chef (Mattsui, the rice cooker, Matt for short) and I invite friends to bring a random fruit or vegetable and we practice creative cooking together. We "take what we've got and see what we get". Its great fun, and most of the time is both nutritious AND tasty! (Uhm, maybe except the infamous yam fondue incident of 2008... which is best forgotten)

#333 Love your body



Not just on "Love your body day", but every day! Even if it is slightly broken and hurts quite a lot, I choose to love my body just the way it is. My body is doing it's very very best to heal and function as well as it possibly can, even with RA, a steel bolted back and whiplash injury. That's awesome!!! My legs carry me around, I can use both my arms and hands, I can eat, smile, talk.... I can watch a beautiful sunrise, listen to music, hug a friend and even dance  - it's wonderful!!!

I'm grateful for my body today, and I choose to show it by spending time and energy on things that I know are good for it. A body living with chronic pain deserves applause and TLC every single day.

I also make an effort to talk good about my body, stopping the negative dialogue that only brings me down. For some inspiration on spreading self love, check out the amazing Operation Beautiful - transforming lives one post it at a time.

#332 Plan for a pain-free holiday season



Holiday season is not an easy time to live with chronic illness. Many of us find that when we are sick, social obligations are extremely difficult to deal with. We want to be close to our family and loved ones, but we have so little energy that it is very hard to participate. Being afraid to provoke further pain flares may lead us to set boundaries and say no to practically all social engagements, but it's hard to enjoy staying at home when everybody else is out sharing the good cheer.

What with the brain fog that often comes with living with chronic pain, plus the effects of stress on our pain levels, good holiday planning is simply a must, so here are a few project management tools that can help you make this holiday season as pain-free as possible:

1. Making a timeline of the weeks from now until New Years, and placing all the dates when stuff is happening helps to get a visual overview of the whole period.

2. Think about what's most important both for your physical and emotional health during the holidays, and then select the activities that are most important to do and the events that you choose to participate in. If it's hard to prioritize you can make a chart where you graph your options to see clearer.

3. Write all your To Dos below the timeline, so you get a neat list of things to do every week from now until the holiday is over.

4. Making a mind map for the christmas gift list may help to make sure you're not forgetting anyone. If you write christmas cards, plan to take a quiet break every day when you write a couple cards in stead of doing a mad rush. If writing is a big strain, send e-cards or sms greetings in stead. It's the thought that counts.

5. Plan time for resting and self care, book it in your calendar and make sure there's a good break in between every planned activity. If you're planning to travel or stay with family, make flare-preventing preparations by talking about what you need in advance, make sure you pack your health tools and extra meds just in case.

#331 Break rules



If you want to be friends with everyone all the time, chances are people will step on you and not take you seriously. There are some health care workers, doctors and therapists who don't see the person, only the rules, and they don't want you to think for yourself. They tell you what you have to do and don't let you participate in making decisions fro your own treatment. One of my early doctors told me to stay at home and do nothing about my RA, just rest, eat the medication and not try any "diet fad" to search for a cure. Thankfully I didn't listen to him! Two years later my RA burned out after a few weeks on a gluten free diet.

As a chronic pain patient you may find yourself being carted from place to place, being told what to do, having to pay huge sums of money and spend lots of time in treatment but still not being seen or listened to.

Sometimes the answers we need are not available in the health care system that is most readily available to us. We may have to search extensively for our solution. Remember, the goal is your healing, not that they get to test their newest hypothesis/drug/treatment. That's when it's important to recognize the need to break an occasional rule. Respectfully, honestly, always taking care to not hurt anyone... but just a little rebelliously;)

#330 Cut alcohol

A small exchange that your body may enjoy: Water instead of wine

Pain makes sleep difficult, and alcohol can make sleep problems worse. It may feel like it helps you sleep, but alcohol actually reduces REM sleep so with alcohol in your system you wake up feeling less rested than before. It also interacts with common pain medication in ways that are potentially life hazardous. If you're living with chronic pain, drinking less or no alcohol can improve your quality of life.

#329 See beyond black and white


When it comes to health there are a lot of fundamentalist attitudes around. People will tell you what is wrong and what is right, either based on their own personal experience or by claiming universal truth through their current belief system, be it science, spirituality or something else entirely.

It's problematic that when faced with chronic illness, we are both drained of energy and desperate for solutions at the same time. We may really want to believe the hype and simple solutions that various health gurus or medical magicians extol, and often have our hope of a pain-free life used by others' lust for money or influence.

Locked in polarized thinking it's easy to fall prey to depression, a good friend and common side effect of chronic pain.

I've explored various extreme theories on my road to healing, and while sometimes losing my balance, I am gradually finding a middle ground. Removing the self-imposed black/white, healthy/sick, good/bad filter on reality is an awesome experience in technicolor. I'm realizing that the same problem may have an infinite number of possible solutions, that my current truth is only a snapshot of the present moment and that the only thing constant is change. If I combine the solutions that ring true to me and constantly keep my mind open for new ones, whatever ideological system they come from, I don't have to follow any one fundamentalist view but can build my own road map to a healthy life. 


#328 Relieve back pain


About 80% of us have low back pain at some point in our life, and in 75% of the cases doctors can't find any specific reason for the pain, so there is no specific surgical or medical treatment. Meaning most of the time, we just have to learn to live with it.

Back pain has perhaps been my strongest and most recurring pain, and after undergoing three major operations to stabilize my crushed lower vertebrae it just is what it is. Sometimes it hurts like @%&#. Sometimes it's better.

Two weeks ago I wrote about preventing and reducing recurring back pain, and here are my best tips for relieving chronic back pain when it's there.

NB: These are only tips based on my personal experience in treating chronic recurring pack pain that has been properly examined by a doctor. This is not medical advice. Always check with your doctor if you have new pain or before you make any changes to your treatment.

1. Start with your mind. Tell yourself its not dangerous, repeat that everyone has back pain once in a while. Force yourself to smile,  calm your mind and repeat affirmations like "I'm safe. My back is stable. Everything is ok. This is going to go away really soon". Then do some deep breathing while you focus on relaxing all the muscles you can.

2. Heat works well if it a muscular pain that has no active inflammation (if you have recurring pain you know yourself which is right, ice pack or heat). Try a heat pack, hot bath or shower and wear wool close to your skin.

3. A good ointment or pain relieving balm plus whatever painkillers the doctor recommends you are essential to get the acute pain under control. If you have a TENS device now is the time to use it, if not consider getting one if you have recurring pain. Lying one one of those bed of nails mats also releases a lot of dopamine and endorphins which provide instant natural pain relief.

4. Try to keep moving if possible, gently patting your body to stimulate circulation, also stroking the skin to activate other nerves and trick your sensory system to block the pain. I have herniated discs and pinched nerves, so gentle traction therapy always helps temporarily. I do a rolling back massage and some gentle stretches as soon as I possibly can, and try working on my balance to not compensate in a way that will add increased strain on the back later. A good friend of mine completely cured her debilitating chronic back pain through yoga, though it may not be first on your to do list, consider it for prevention!

5. I've found that activating the nerves in my feet seem to distract and immediately reduce the back pain quite a bit, I don't know why. So foot treatment, foot massage, or wearing those painful spiky sandals can help relieve back pain too.

I hope some of these tips can help you next time the back pain strikes, or maybe just remind you of things you already know? As soon as the flare is over, go back to back pain prevention,  support your spine and try to build strong and balanced core muscles, that way you may avert future pain flares.

#327 Express yourself




As a a person who lives with chronic illness I have a very different life than most people I know, yet I may not want everyone to know that when I'm out in the real world - beyond waiting rooms and hospital beds. 

At a workshop for a project I was working on last year I heard this marketing mantra:

"Everything communicates. Always."

And it made me think differently about a lot of things. What am I communicating through my clothes, my walk, my language? I don't want to communicate that I'm a sick person, or that people should feel sad for me or help me. I'd rather be either anonymous, or communicate joy, strength and humor. Sometimes I wear "power-clothes", that make me feel stronger than I really am, sometimes I wear a T-shirt that says "fragile, handle with care". I often choose to wear something quirky or slightly funny, when I'm actually feeling down. It cheers me up, and cheers others up too... Making other people laugh usually makes me feel better. 

Even when my life is filled with chronic pain, I don't have to be invisible. Today's pain free tip is to dare to be different.

#326 Deep breathing


Woops, I forgot to follow up on the very important topic of Stress&Pain... sorry to leave it hanging!
Here's the breakdown: Sometimes I get caught in the pain-stress cycle. I have a stress response going on in my body, I start breathing really shallow breaths and tense my muscles... this affects my pain levels, which stresses me further. Then I get afraid that I won't be able to bring the pain down again and get even more stressed... and... then I'm caught in a negative loop.

The best tool I've learned to break a stress-pain response is to take a few minutes to practice deep breathing. Apparently, just the act of using the deep belly-breathing that we do in deep and comfortable sleep sends signals to the brain that "everything's ok, you can relax...". So even though nothing around me changes, my stress response is shut down and I can then start doing things to alleviate the coming pain flare.

If the pain is already spiraling, I put on a CD with 15 minute instructed deep breathing technique (part of a stress management kit). Then I can just listen to the instructions and do what it says. It always has some positive effect. If I catch the stress response earlier on in the cycle, I can do this:

1. Stop whatever I'm doing
2. Close my eyes
3. Inhale deeply through the nose while letting my belly expand to draw oxygen down to the lower part of the lungs
4. Hold my breath shortly
5. Release and repeat 10 times

This can actually be enough to break the negative pain/stress spiral. If I follow up immediately with some happy music and a 3 minute workout to get my circulation going, I may be able to stop an incoming pain flare.

#325 Find a safe outlet

Art by Rimfrost on Deviantart

The last week has been pretty wild. I was on Norwegian TV with my book, and participated in an online discussion with readers and viewers afterwards. The discussion reminded me of something I don't often talk about here on this blog:

Living with chronic pain is torture.

Actually, it is pretty close to hell.

People can get angry at my "positive thinking" angle, and I totally understand that. Positive thinking doesn't make the pain go away, and when your nervefibres have been screaming every day, year after year, hearing somebody say "think positive" is enough to put most of us in a completely understandable homicidal rage.

I have needed to find a safe outlet for my pain, grief, trauma and despair. I have found it in music, writing and painting. I also attend self help groups and I have had great help from good counselors.

For me, being proactive about healing and working to think positive is simply a matter of survival. When I'm depressed my pain signals intensify, this is partly because chronic pain and depression share the same bio-chemical messengers in the brain. Simply put: Gravity is constant. When I don't work continuously on myself, my health declines, and my pain gradually intensifies. I´m so afraid of going back to that place of constant agony that I hardly ever talk about it. I just smile and say "it's over now" - not even daring to think that it may come back at any time. My healing is fragile - and keeping it up is a full time job.

I choose not to talk very much about the negative sides, because talking about it actually activates the pain center in the brain and intensifies the pain. I also choose to not share all my pain with my closest friends and family, because I want to have a positive, uplifting exchange with them and not be a victim or a martyr. But I have my safe outlets for talking about the worst parts of living chronic pain, and those are invaluable.

#324 Activate your placebo


I recently wrote about Befriending your placebo  as part of a pain management program. As we know the placebo effect is a response to sham or fake treatment, and is effective in roughly 1/3 of patients in scientific studies. It's a powerful tool, and one I have used actively while pursuing my own healing. I want to write a little more about what exactly you can do to activate your placebo. My definition of the placebo effect is "my body's own healing mechanism, over which I have no voluntary control"

I believe that activating the placebo effect has a close connection with trust.


If a doctor I really trust tells me that...lets say... carrots will cure my shingles, and she can give me a good rational explanation for why this is the case, I will try it whole heartedly. Then I have a 30% chance of activating my placebo and getting great relief.

So in order to activate my placebo, I can use the element of trust. I can work actively to build my own healing team with people I respect and trust, and not waste my time on the ones I feel I can't work with.

Secondly, I can increase my chances of activating the placebo effect by retraining my brain. I work hard to practice positive thinking, eliminate doubt, focus on my goal of a healthy, pain-free life and consistently choose to believe that healing is possible. I practice selective hearing and accept that I may have to take a few detours in order to maintain my dream and not lose hope even when times are rough.

This may not be a miracle cure for chronic pain, but it may be as close as I'm ever going to get:)

#323 Create sweet art


Being cheerful is good medicine, not only because smiling releases happy hormones like endorphins and dopamine (but it helps). Enjoying some everyday craziness is one of the ways I process my battle with chronic pain and invisible handicaps, and grief can be a great catalyst for art.

Combine all of these three and you have an amazing pastime: Sweet art!!!

"Sweet art" is a pun on "street art". As far as I know the term was coined by Navid Modiri at 365 saker du kan göra, and it's a way to beautify your town with a hint of crafts and tagging. Grafitti knitting is one of the things you can do, other good examples are making small decorations and placing them in the street picture where people can notice them if they are aware of their surroundings, like little drops of hope in a sad city. I think of it as a way to spread joy and inspire others, just because I have a chronic illness, doesn't mean I have to mope and feel useless.

#322 Validate your pain


Your pain is real.

Don't give up, just because others don't understand.

Maybe you will never get the explanations or the validation that you need from others, and why should you waste your life waiting? Start by validating yourself. Listen to your body, validate yourself and care for yourself. It has to start there.

#321 Have healthy snacks on hand


I'm a firm believer in DIY health solutions. Living with chronic illness is an enormous challenge every single day, and I've noticed that all the small things I do have a snowball effect on my overall health.

Everything that gives me more energy, helps me stay fit, happy and cheerful - affects my health and also my pain levels. When I take care of the small things, sometimes my health works so well that I almost forget I have arthritis and a broken back!

On the other hand of the scale, if I'm in pain but trying to do stuff anyway, I often overexert myself, get stressed and forget to eat. Then the pain escalates, my energy level drops and if I keep pushing I get very very weak and have trouble walking. My "invisible handicap" becomes visible. That's why keeping small and healthy snacks on hand is one way I take care of my body. A simple thing like keeping my blood sugar level stable has a surprisingly strong affect on my well being. So I try to have nuts, fruit and fruit juice available instead of going hungry and resorting to coffee and chocolate - that way I am helping my body do the best it can!

#320 Read a patient's memoir


A memoir is a self-biographical book, i.e. a book about somebody's life. Many people who have gone through serious life altering disease have written books about their experience, and on my healing journey I've found their stories to be a source of strength, comfort and hope. My own memoir was recently published in Norway and I hope it can inspire others.

Some of the best patient memoirs I've read are both humorous and moving. In "I had brain surgery, what's your excuse?" Suzy Becker writes and illustrates her journey through treatment for brain cancer with startling wit. She describes going through surgery, rehabilitation and how fighting illness and handicaps affects her relationships with family and friends - and also her identity.

I'm currently waiting for Paula Kamen's book "All in my head" - (An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache) - which is rumored to be one of the best patient memoirs to be published in recent years, and I'm still very much inspired by Nicole Hemmenway's memoir about her journey from sitting in a wheelchair to running a marathon while living with and overcoming RSD, "No it's NOT in my head".

#319 Prevent back pain


The last few weeks I have met some amazing people who have one thing in common: They all suffer from back pain. Stabbing, aching, debilitating. They do their best to participate in everyday activities, but walk around like frozen statues, aching with every step. Talking to these people inspired me to put together two posts especially about preventing and overcoming back pain, based on what I've learned about it the last 14 years.

PS: these are only tips based on my personal experience, and are not medical advice. Always check with your doctor before you make any changes to your treatment.

Back pain prevention 101:

Whether you've gone through several back surgeries or you have a recurring backache that is just a constant part of your life, these are some simple tips that may help prevent more pain.

1. Prevent flares. If you have a condition which gives you back pain regularly, focus on preventing pain flare ups instead of becoming frustrated and seeking treatment every time the pain becomes acute. Try to avoid activities that you know provoke your pain, adjust your schedule and pace yourself so you don't overdo it on good days and provoke a new flare.

2. Get physical and keep moving... Only a very few and extreme cases of back pain require bed rest, for most types of back pain, resting just makes it worse. Start by building support core muscle, through balance training, pilates, chi gong or specialized physiotherapy and work from there.

 3. Watch your posture, both when you're sitting and standing. Tuck in your chin and keep your back straight. Practice variation, swap between sitting, standing and moving around. Make sure you carry balanced if you carry at all, if you bring a laptop around with you, carry it in a backpack.

 4. Do some kind of gentle warm ups first thing in the morning before you start using your back for anything heavy. Start your day with a cold shower, then scrub or brush your back and legs and switch to hot water to increase circulation.

 5. Have a good bed, and support your spine with bolster shaped pillows or wedges.