Stuff we learn...

”Life is a lot like jazz... it's best when you improvise.”

-George Gershwin

Making friends with pain

When I'm constantly fighting the pain, my body becomes a battle ground... so I've decided to be buddhist about it and embrace my enemy :)

Feeling electric!

It's been a pretty intense year. After spending 2010 working mostly on this blog and my book, this year I have been in worse shape physically - and have had time for reflection. After I got the grant to start a Norwegian blog about the health care system  I've been getting more involved in politics concerning chronic disease, patients rights and freedom of choice. With more pain, there is less energy, and I've also had to rethink many of my viewpoints on chronic disease and the biomedical paradigm (which I used to criticize abundantly). Things are changing, and I guess I'm learning and developing.

Today is a great day, because I've just received a new shipment of TENS electrodes from my sister in Austin. My last TENS electrodes were wearing thin already in May, and with a new cold season approaching and rapidly increasing pain levels I've been trying to get new ones, but they are hard to come by and ridiculously expensive here in Scandinavia. But with some help from my globetrotting family I have now received 48 new electrodes, which should keep me supplied for atleast a year:

These things aren't easy to find where I live...
but they work wonders for my chronic pain!

So for the next few months I'll be wired and electrified daily. I wear the TENS unit while working, driving, reading, resting... whatever I need to do - and it immediately diminishes my pain and helps me keep intake of medication low. I'm training a lot these days, following a pretty strict physical regime with ashtanga yoga and physiotherapy and I hope that will help me manage to stay on my legs through the winter!

With the TENS on my belt I am fully mobile 

Understanding pain - video

This educational video sums up the new pain paradigm in just 5 minutes. Maybe a bit simplistic for many of us, but great to share with our friends and family as an introduction!

Ouch? Pain pitfalls and boring setbacks

Sorry for being out of touch lately... I have forced myself to take out sick-leave from all non urgent activities and keep my computer time to a minimum. Nothing dramatic, just a grinding increase in my daily pain through this whole winter, that has left me slightly more humble and quite reduced.

Once again I have trouble walking to the tram and back, not because I'm paralyzed, simply because I have no energy after struggling with pain around the clock for several months. I've wanted to inspire others by sharing how well I've become, but I'm starting to see that "Healthy" isn't a one way street. Sometimes we get better, sometimes there are setbacks.

I usually get worse during winter, but this winter was really bad... part of me wants so desperately to understand "why?" that I could probably spend a whole day describing different possible pain triggers and health theories. I want to understand because by understanding, I can maybe reduce the possibility of new setbacks. By removing pain-inducing activities/foods/habits, maybe I could get well again?

But whatever the reason for the setbacks, I'm going to spend as much time as possible to rest and recuperate for a while. At the same time I will keep doing what I've learned to do, which is focusing on building health with gradual small changes and adjustments in my daily life.

I have lots of new thoughts to share... just don't know where to start..! .... Well, I guess I can begin with this recent movie. This is anaesthesiologist Elliot Kranes presentation about Chronic Pain at Ted Talks, where he explains why pain is a disease in its own right, describing a new medical understanding which will hopefully lead to more sucessful treatment options. Enjoy :)

omg SPRING!!!

I walked underneath these cherry tree blossoms on my way to the office this morning... huge fluffy pink clouds of flowers... woooow :) reminds me that watching beautiful nature can provide pain relief. Now that summer is coming, I'm expecting - or hoping for - a significant decrease in muscle pain. 

As this has been a pretty bad winter pain-wise, I've been taking measures to take care of myself and get control of the pain spiral. Needing more rest, I've had to spend most of my energy on exercise, mental training and pain relief efforts. Apart from the cardio-workouts, frequent hot baths and cold showers, physical distraction, meditation, spiky rest on my endorphin producing accupressure mat, I've taken up morning yoga, and gone to some rather drastic measures when it comes to dietary changes (more about that later). 

Besides Kristine, my super-awesome PT who's helping me get in shape with a specialized training program, I have a new physiotherapist who is bullying me around these days. He's been zapping me for my posture and getting me started with the TENS unit again.

*phew* Living with a chronic ailment is pretty time consuming... and with three? Sometimes it seems like I hardly have time for anything else!

Building a pain-free life

The most important discovery I've made so far in my struggle with chronic pain, is that I have lots of options for pain relief. If I see my goal of having a life unrestricted by pain as a building project rather than as a race, I am free to choose different building blocks and combine them in various ways in order to find a combination that I am happy with.

Personally I don't believe in miracle cures any more. My first few years as a chronic pain patient I was desparate to find a cure and willing to try just about anything. Always hoping that this treatment, this operation or this medicine is finally going to make it all go away... and being disappointed time and time again. But as the years go by, I've tried hundreds of techniques and treatments and have gone through both good and bad periods. Now I have finally come to accept that sometimes it hurts more, sometimes less, sometimes I understand it but quite often I don't.

It's not a magic miracle cure I need, it's a lifestyle that lets me enjoy life whether I have pain or not.

Taking care of my health by doing the right things in my daily life is my preferred cure for chronic pain today. Eating habits, sleeping habits, exercise... essentially everything I do and how I do it. Each choice and each action is one small but vital piece in the structure I am building. They all count towards my pain prevention and when put together they can result in long periods where I am well-functioning and pain-free. Completely without drugs or tiring and expensive treatment.

This building project is both empowering and enlightening. For every building block I find that helps me improve my health and well being and reduce my pain I regain some of the power and some of the freedom that my chronic illness has taken away.

The source of the pain may still be there, but it doesn't affect me as much anymore.

Pain-free tip: Move to a warm climate...?

I can sympathize with this mammut. Living with RA + having about half a pound of steel in my spine makes winter a challenging time to say the least. I'm visiting my native Norway this week and there are still several feet of snow here, while in Gothenburg 3 hours south all the snow and ice melted several weeks ago - but it's still cold as #&%. Sometimes I wish I could live in a warm climate, without having to leave my home, family and friends.

Maybe I'm a bit slow, but it actually took me several years living with RA before I realized that generally, every year, winter was tough with a lot of pain and stiffness and summer was better.  Now I've been even slower in realizing that maybe, perhaps, I should take this into account when making plans! It's not particularly smart to plan intense periods of activity (like launching a book and moving house) during the part of year when I have more pain. Basically it's a great way of wasting spoons.

Ok, so theoretically, living further south would be good for my pain, but I don't want to be a "climate refugee". But this year I can plan smarter, by doing fun and active stuff during summer to build my strength, and planning for a calmer less active winter season with at least 2 weeks holiday in a warm climate somewhere in the darkest months.

Doesn't actually sound so difficult, so maybe I won't have to end up like poor Uncle Hector and get caught in the ice.

Either way, I find the pain isn't half as frustrating when I understand why it's there. Then it's easier to accept the ups and downs and choose a strategy.

Paying the price of enthusiasm...

Ten days of level 6-9 pain after one botched pilates class... what's up with that?! It's been a gnawing constant ache in my neck and upper back for the last week, inflammation? Overstretching? I don't know what it is, only that whatever it was that went wrong has set off my old pain so now I'm right in the middle of a strong flare.

I went to the doctor - new doctor in my new hometown - and apart from telling me that neck pain is a typical "woman problem" he didn't offer much help. I'm now quickly losing faith in all drug-free forms of pain relief and wishing there was something more radical I could do.

This is typically depressing, I was doing so well with new excercise, but now it's hard to push myself to do very much at all. I just want to be more like this...

and less like this...

So that's my news for now. Sorry for the depressing attitude, but I've said I wanted to "increase awareness about chronic pain" and this is the real deal... Seems like I'll be heading for a pain clinic in my new home country soon. I hope they don't have as long waiting lists as they do in Norway!

A painful day at the gym

This year's experiment: "Just how pain-free can I get?" is taking an interesting turn. I'm not very happy with the Omega-3 for inflammation relief experiment, but the "getting in shape" experiment is progressing nicely.

After being "good" for two weeks, working out 3 times a week while pacing myself and not doing too much, I seem to have reached a rather dangerous point in the journey. I've had pretty good effect of this experiment, the pain has been better, I am getting in shape and enjoying the exercise.

Now I can either get lazy or get reckless.

Getting lazy is quite natural, as soon as the pain gets better I forget why it's so important to keep moving and stay in shape... Getting reckless is probably just part of my enthusiastic nature, "YAY! I have no pain, now I can lift just as heavy weights as I could before I got RA and broke my back!!"

On Friday I got kind of carried away and optimistically joined a pilates class. Having heard nice things about the pilates instructor at my gym I thought it would be nice, soft, core training... bouncing on a pilates ball and smiling with happy people.

Turns out that was the other pilates instructor...

The class I walked into was led by a fast paced french lady who bossed us around with a manner not unlike a drill sergeant. After 20 minutes of being whipped from one impossible position to the next, I was fast regretting my choice of activity, but unfortunately there were 19 sweaty people between me and the door... and they looked strong!

My choices were simple:

1. Pick up my mat and thread my way past all the strong and sweaty people to get to the door in a demonstrative show of defiance...
2. Try to hide behind the potted plant in the corner and pray that the scary instructor didn't see me... or:
3. Play along and look like I was doing the exercises even though I wasn't able to do hardly any of them

I chose option 3, and now for three days I have been paying the price of that decision. I hurt in muscles I didn't know I had! Maybe I got some exercise, but I'm not actually sure it was worth it... *phew*... really need to work on the "pace myself" part...

No pills!

Wow!!! I just had one of those "A-ha" moments... I looked at a box of ibuprofen and realized that ... I haven't had to take any painkillers for quite a while, at least four or five days!? That may be a new record since my straight edge experiment in september... which ended shortly after I wrote about how well it was working - having gone 5 weeks with low pain and no meds.

The last months have been tougher, and I've had to take painkillers almost daily again. Scandinavia winters will never be easy for my body I guess, and moving right in the coldest part of the year may not have been a good idea. But now something is helping, even though it's been freezing cold and I've been working quite a lot. I have a little pain but not above 5 on the VAS scale... Hoorrayy :D

The funny part is when I realize this without even having thought about whether I was taking medicine or not. The pain simply hasn't been so bad... out of body, out of mind: Yay!!!

Share your thoughts...

Dear readers, there are now more than 5000 people reading this blog every month, and I see I need to start organizing the content better!

This is where I need your help...

How should I organize the material to make it more easily accessible? Would you prefer tags or folders that make it possible to search the entire site for certain keywords, or perhaps a system based on what kind of pain condition you have or different stages of pain management?

Many people have asked for advice for caregivers, so I might add a category with advice for friends and family of chronic pain sufferers.

Otherwise, maybe a "readers top 10 list"? Do you think the sidebar navigation is helpful, and are there certain page elements which are annoying or not functioning well?

Please let me know what you think, I'm all ears :-)

Pain-free greetings from Anna

Inflammation and pain

Week 3 of my pain reducing experiment is finished and I am not keeling over yet, Yippee :D

The two last weeks of gradually building stamina with micro cardio workouts have had a good effect on my pain levels, but what my new physiotherapist told me last week seems to be a key topic...  Chronic pain and inflammation go hand in hand (or nerve fiber in nerve fiber?).

There are gradually more studies being done pointing in this direction, and though medical science hasn't found all the answers or explanations yet, there seems to be potential for some real breakthroughs in treatment of chronic pain in this area.

Due to my RA (which these days is not active, and is acting a lot like fibromyalgia) I seem to be especially prone to out of control inflammatory responses in muscles, tendons and joints. And it hurts.
Now instead of bombarding my body with immunosuppressant or anti-inflammatory drugs I want to try to take small steps in the direction of an anti-inflammatory lifestyle. I'm not ready to go all out and start on a full anti-inflammatory diet yet. I'm already gluten-free and that's quite a lot of hassle the way it is.

But I figured I could start with taking anti-inflammatory omega-3 supplements and let that be my incremental pain-reducing activity this week.

• Omega 3 helps decrease inflammation by suppressing the production of cytokines - small secreted proteins which help regulate the immune system and inflammatory reactions.

I have tried several kinds of supplements earlier, this time I am going hardcore and testing a 6 month subscription of the anti-inflammatory olive&seal oil compound supplement OliVita which is especially structured to enhance the natural anti-inflammatory properties of both. So as of today.... Twice a day. Me and the good'n healthy (but slightly yucky) oil have an inflammation-busting date!

Pain Police

While I'm still working on my "cardio for pain-relief" experiment, today I was stopped by the Swedish police and had to blow into a breathalyzer. Since I don't drink alcohol (for health reasons), this is always a laugh, but this time I had a hard time exhaling as long as the device wanted me to.

After my first attempt the policeman looked at the display of the breathalyzer and smiled. He said "It says here that you've passed the alcotest but you failed in cardio. It says you need to get out in the forest and go for a run to build stamina."

Little did he know that I'm so low on spoons that I can hardly walk to the store and back these days... and that cardio training is part of my current pain management program! But we both a had a good laugh and I asked him for some advice on swedish traffic regulations before driving home. All in all an uplifting encounter and a good reminder. I'm on the right track!

Working out

Yesterday I had my first session with my new PT and coach, Kristine, who is a physiotherapist AND professional football player (how cool is that!!!?) Her first reaction on hearing my health story was... "But you're not normal!"

... eeeh... yes. She's right of course... I'm actually an alien in disguise...

But what she meant was that I had a special story and a great attitude. That was nice :) We talked for a while and made a plan for my rehabilitation, then she examined and gently massaged my back. She said that it seems like some of the muscles in my upper back are inflamed. They're extremely sore. She told me that newer research on inflammation and pain indicates that inflammation over time may change the structure of the muscle and even fuse the nerve fibres to the muscle in some way. I'm not sure I understood, but it sounds very relevant to understanding chronic muscle pain, so I hope I can learn more about it.

Being out of shape but extremely enthusiastic and slightly backbroken, my main challenge while starting to exercise after a long break is to pace myself. I need to build muscle slowly without overexerting myself, so for the first two weeks I'm not allowed to do harder stuff than warm water training, Pilates, and short cardio workouts on the cross trainer. It's hard to set boundaries like that, I love working out and being active, so I tend to just jump in and do as much as I can, and then collapse... really need to work on that whole "patience" thing...

I was back at the gym today to participate in my first class of warm water training - which turned out to be really fun. Lots of people waving their arms and dancing underwater, a cheery instructor showing us how to use all kinds of funny flotation devices while we're pumping our legs and giggling. But it was hard work!!! I'm sore all over, feeling muscles I didn't even know I had... Still my regular pain isn't worse than usual, so it doesn't seem like I've gone too far. Carrying a bag of groceries set off my neck injury again though, so I'm still in pain for the 4th day in a row.

*phew* 

But the sun is shining, and spring is coming... so I think that I'll get through this winter too:)

It works!!

Day 8 of micro cardio workouts and it's thumbs up for this test, this actually helps my muscle pain! Lately I've had pretty bad neck pain and muscle pain daily, but I've noticed significant reduction this last week while testing out micro cardio workouts - even with certain slips. Maybe it's too soon to say for certain, but so far it definitely feels like getting my pulse up and circulation going for at least 90 seconds several times a day is helping on the general "aches and pains" and bringing my pain level down.

I'm going to keep working on cardio and see if that also helps my energy levels. If I have more energy I'll be able to get more active again after a bad pain period this winter. My goal is to be able to do a decent 4x4 interval session three times this week... without overdoing it.

Serendipity (and brain fog)

Ok, I admit, this cardio thing is turning out to be quite a challenge... maybe it's some kind of passive resistance, but it sort of feels like I have a non-stick teflon brain...I just keep "forgetting" to do the micro workouts... Ooooops ;) It's easy enough first thing in the morning, but as the day progresses I find myself sort of just.... not doing them.

But today I had some wonderful serendipitous flow! I had decided to treat myself to a spa day to celebrate the completion of 365 pain-free blog posts last year, and today was the day I had set aside. I've only just moved to Gothenburg so I didn't really know where to go, but a quick Google search led me to a couple places and I found which one was closest + seemed nicest and decided to go there. Hagabadet it is! Samuel is in London for work, so I had the day all to myself.

Hagabadet

When I got to Hagabadet, an amazing Jugend style old bath house converted to modern spa and gym facility, it turned out that just today was their annual "Open House" day, so everything was free, including entrance to gym, spa, pilates and yoga classes and trial treatments. They even threw in fika and gluten free cookies. Whaaaat? Just today? On my scheduled spa day?! And as if that wasn't enough, they had some super deals on their open house day, which resulted in me signing up for a very advantageous membership - so now I can train at this beautiful place and use the spa during daytime as often as I want for the same price as a regular gym card.

I celebrated by having an 8 minute cardio session on an elliptical trainer, and after surprisingly surviving that, signed up for my first session with a personal trainer next wednesday.

Yikes. I've been looking for a good place to work out in Gothenburg ever since I decided to move here last August, but I didn't think it'd just pop up like this... out of the blue? How fun! Hopefully this will be the beginning of many great exercise experiences in my new hometown. And hopefully I will live to blog about it;)

Pain relieving cardio

It's easy to fall into a negative pain spiral during the winter months. When the streets and sidewalks are covered with snow and ice as they are now, I tend to get stuck indoors a lot and gradually get less energy and more pain.

I know that increasing my heart rate regularly helps circulation, which directly affects my pain levels, increases my metabolism and releases pain relieving endorphins. But when getting to a gym and back takes more energy than I have, I need to start closer to home.

For a professional patient, exercise has to be easy to do at home and also fun.

Talking to personal trainers I have heard that increasing stamina is best done by adding short high intensity intervals. Adapted to my current state I've decided to start getting in better shape this week by doing micro cardio workouts 3 times a day to get my circulation going and my heart rate pumping. Starting with 3 x 90 seconds aerobic exercise either by dancing, stair climbing, squats or running in place I'll see if I can build up to 3 x 3 minutes by the end of the week, hoooray :)

Motivation is important here... but I know that the hardest thing is getting started, and once I start feeling results I will get a motivation boost!!

Straightening up

This week I found myself speaking in front of a large group of physiotherapists and chiropractors at the annual conference for the Norwegian chapter of the Bone and Joint Decade. I decided not to tell them about my little "working on my posture" project, as they all looked suspiciously healthy and pain-free... it sort of felt like we were living in different worlds.

Sometimes when I give talks about my story, people in the audience start crying. They laugh too, but that's sort of part of the deal, I use a lot of humor when talking about health and healing. But why do people cry when they hear about other people's pain? Is it just empathy, or does it awaken their own grief, something they don't often look at but maybe need to deal with? Sometimes it feels like by being a professional patient who has learned to live with her handicaps I am also being some kind of ambassador, reminding others that quality of life is not simply about "fitness of body".

While preparing for this conference I spent time working on my presentation, and realized that the posture thing was very very relevant. Body language and all that... But keeping a good posture when standing up and concentrating on it wasn't all that hard - and it definitely feels like it can make a BIG difference on my overall muscle pain.

While working on my posture this week I have just kept bringing my attention to it, checking and correcting as needed, maybe once or twice an hour, sometimes more often. For correcting my posture I have used this old technique I learned sometime in drama class, visualizing that there is a silk thread attached to the crown of my head, gently pulling me up and straightening my whole neck, spine and body.

It works really well when I sit too, and this week it's been really obvious that my neck pain (and in extension migraines) are very directly affected by my seated posture. Especially when I'm in front of my computer I have a tendency to slump and let my head fall forward, which I notice strains my neck muscles in a way that seems to provoke the whiplash pain with a delay of a few hours.

Ok. So first week of implementing gradual change feels very meaningful!!! I have learned important things about how HOW I use my body directly affects my physical pain.

Hmmmm... now what would be a natural next step? Will ponder this until tomorrow... :)

First weekly challenge...

Since it's my very first pain-free challenge, I want to start out with something basic yet important.

Posture.

My posture affects my pain. It's somehow the very basis of how I use my body... my physical "setpoint" in a way. A good posture improves circulation and decreases stress on muscles, tendons and discs, thereby preventing muscloskeletal pain and stimulating overall health.

I have average-to-alright posture I guess, but I have a tendency to slump my neck and shoulders, and a tendency to favor my right side. The slumping neck and shoulders really provokes the neck pain from my whiplash injury, this is something I know, yet keep forgetting... It can set off really bad migraines, but if I just remember to straighten my neck and tuck in my chin, many of those can be avoided.

When I continually favor my right side, I place extra strain on my lumbar spine, by building unbalanced musculature there.

I don't really know if I'll be able to do anything about this in just a week, I guess I have to start with building awareness, and maybe having a signal that reminds me to check and correct my posture every hour or so? When I get into it I may be able to start doing some balance training that promotes good posture, but as a beginning I think I'm just going to challenge myself to improve my posture as much as possible as often as possible this week.

... And I'll let you know how it goes...

Reboot...

...and enter 2011!!! It's been two weeks already, 12 days of which I have been a mostly horizontal, feverish and sniffling mess - trying to reason with a cold that turned nasty.

I have a little message for my readers and fellow pain survivors here at 365 pain-free days, and just because technology is so fun, I decided to do it in video:

New year, new challenges, right? Well I have decided to turn a leaf on my blogging, and start living as I learn. By implementing gradual change and focusing on one thing at a time, I wonder just how healthy I can become...