I've been posting about goal-setting, and mentioned the Wish List approach - today I can do the Big Reveal!

Thanks to my colleagues at PMC (who shall remain nameless!) I have attached a copy of the ways-i-want-my-life-to-change-wish-list that people can use at the very beginning of a programme to help identify the areas they want to influence by developing pain management coping skills.  It can be used instead of the menu I showed yesterday, or it can be used alongside it.

There are quite a lot of areas that people would like to change or learn about with regard to chronic pain, and this list isn't designed to be exhaustive. It's also not especially specific in terms of making measureable goals based on research into goal-setting that we've discussed a few days ago.

What it does do is give you, as the clinician, a really good idea of the sorts of needs the person has already identified. In terms of motivation or readiness for change, it can indicate areas that the person is already 'contemplating', or is even perhaps in 'preparation' for change. Prochaska and DiClemente's model (oh yes, I've talked about this a LOT!) and work around this model clearly supports the finding that people need to be in the right space to even start to consider making changes.

If the person is never asked to consider an area that could change, though, it's fairly difficult for them to actually decide that they would like it to be different, so part of our role is to help open up the possibility for change - and you can see this in the 'Wish List'.

I use this Wish List at the very beginning of the programme, asking people to tick all the areas they would like to see changes in. Then after a week or so, I ask them to indicate their three most important 'wishes'. Then we can start working on importance and confidence: why these areas are important (providing the person with the opportunity to reflect on how important it is to them, and uncovering personally-relevant values to support their change process), and how confident they are to achieve them. Once we've identified their level of confidence, it's part of my work to help the person build the confidence to start taking steps towards achieving the changes they want to see in their lives.

To me, pain management is not simply about developing a set of new coping strategies that can be employed while the person continues on in their life. It's much more about reconceptualising who they are: to move from a person who has become quite experienced at being a patient, and following other people's requests or directions, into someone who has their own life to live, their own direction to follow and is becoming a person again.

This is why I feel quite frustrated with many self-help books, even for chronic pain, that are chock-full of new ways to cope, but leave the integration of these coping skills to the person.  Integrating new skills is critical for the skills to actually be used. If you've ever been to a workshop and come away with a whole set of new ideas - only two weeks later find yourself doing just what you've always done, you'll know exactly what I mean!

In industrial and organisational psychology, a lot of research has been undertaken into 'transfer of training' - and things like ongoing support in different contexts, refresher courses, memory prompts, support from 'important people' (eg line managers in a factory) are all known to be both effective and almost essential before training can be implemented in a workplace. (For some good information on transfer of training, this site provides some good resources).

Now, start to think of how we as health providers, support transfer of skills developed in a clinic: how many of us get the support of the 'important people' in the person's life to help them use the new skills? How often do we consider the network of relationships that are a part of an individual's context? How could we help that person make the links between what we show them and what they can readily use in their own environment?

This is really important as far as developing pain management skills in the workplace goes. Without specific support to help someone use their skills, in the context of work where all the cues for old behaviour exist, it's going to be very difficult for them to recall and do something different. Especially when they are perhaps not entirely convinced that this new way of working is helpful.

So while pain management itself is not about 'personality makeover', it is all about reconceptualising the person-as-patient into the-person-as-person. Without that essential 'new belief' the person will likely return to old habits.

Your challenge for today? What about taking some time to think about one method you could use to support someone to recall a skill that you are helping them develop? How could you transfer what they are starting to learn with you into their home or work situation - hey, even into their car!

but pain is simply taking its toll.  A lady who can hardly speak English (married to a man, same) had put her carseat into the garbage.  Rose, my wife, was going to carry it a block to the dumpster.  Notionally (it was about 60 pounds, about my one-hand weight limit for carrying right now for relatively short distances).  I carried it, and am suffering considerable consequences.

However, there should be a remark just following this entry...

--Glenn

When you can't make the next step, and know you can't--just make it.

ButYouDontLookSick.com - The daily online magazine for the Chronically Ill and disabled has managed to reach a milestone that so many websites fail to see. This month www.butyoudontlooksick.com celebrates its 5 year anniversary.

The site, founded by Christine Miserandino, offers tips, product reviews, articles and essays which have become invaluable to people with any chronic pain condition, or illness.

“I am so proud to be online for 5 years. I have seen my site grow more then I ever imagined. I always knew we could use technology as a tool for those of us with health issues to help each other and build a community.” says founder Christine Miserandino.

In recent years, ButYouDontLookSick.com has transformed from a personal web site to an international community and support network for the chronically ill as well as their loved ones. The site now features articles from several talented authors as well as a forum, chat room, “Get Well Gift Store”, and daily content delivered via newsfeed or e-mail newsletter.

ButYouDontLookSick.com is also the home of “The Spoon Theory”, a young woman’s explanation of what it feels like to live with Lupus. In her story, author Christine Miserandino wanted to explain how someone with a chronic illness makes choices everyday that a healthy person takes for granted. “I wanted something for her to actually hold. If I was in control of taking away the spoons, then she would know what it felt like to have something else, in this case Lupus, being in control.” says Christine. “The Spoon Theory” has been featured in many health newsletters, magazines and support groups. The story has touched so many of the ButYouDontLookSick.com readers that they affectionately refer to each other as “Spoonies”.

The message boards and chat room at ButYouDontLookSick.com have nearly 5000 active members. “It is very easy to feel isolated and uninformed when you are sick or stuck at home. I built this site to help people living with similar symptoms or experiences make connections.” says Christine Miserandino. With this much growth in the first 5 years we are excited to see what the future holds.

*Christine is available for interviews, quotes, or guest blogging.

_______________
Ends press release

For six years I've been trying to figure out how to live with chronic pain and fatigue.

What I've learned so far is:

• It changes how you live completely
• You have to allow yourself to have fun quite often no matter what else is not getting done
• It's hard as hell and character building lol
• It takes a long time to learn to be different about everything
• It's hard to accept
• It's hard knowing everyone thinks it's all in your head and you're really ok....
• It's hard to change your whole way of living when you are too tired to live most of the time
• You have to keep moving as much as possible without overdoing it

I'm sure there's more to add and I'll be revising this alot, but I wanted to stop procrastinating and just get started today.  I'm going to use this blog as a place to pull together all the things I've changed and still need to change about how I live to make things easier.

I mentioned in my post yesterday that it's not easy to help people work out goals.  Most people have a fairly general idea of how they'd like their life to be, despite pain, but have lost sight of the possibility of how life might be in the future. I spoke about this with a person this morning who told me that he has lost confidence that life can be anything different, so when he was asked 'what do you want from pain management', he was floored!  He told me that he has lived 'from day to day' for so long that he had lost sight of considering where he was going in his life. I don't think this is uncommon for people living with long-term pain, before they start accepting pain as chronic and start 'living' with their pain.

So the first step may be to use a menu approach as I suggested yesterday, but somehow this needs to lead in to longer-term 'life change' goals, so the new knowledge can be integrated and retained.  My vision for people learning to live with pain is that they move from thinking of themselves as 'patients' and move to thinking of themselves as 'people' - and more importantly, that they are people who are doing things. That way their pain condition becomes no more important a part of them than their height, ability to do maths, or interpersonal skill: just part of who they are.

We've discussed the menu approach, which helps people to look at things they're interested in.  Then quite often we help the person develop the pain management skills are linked to the clinical hypotheses we, as clinicians, developed about the factors that we have assessed as influencing their pain presentation.  These are may be things like activity management, relaxation training to reduce physiological arousal, communication skills and so on...

Then the part that I think is vitally important, but not always recognised: change management in 'real life'.  Some people call this 'goal setting'!

The 'wish list' (I promise I'll feature this tomorrow!) asks people to identify general areas they'd like to see change in their lives.  This goal-planning worksheet is one way to help people develop specific 'next steps' to take, and ways to identify and measure the actions and resources they need to take to make it happen.

Click on it, and you'll be able to see that in the centre is the 'goals area'. I've described this as 'I want to...' with lots of space to draw or write exactly what the person wants. If they can't be very specific, that's fine because details are refined as part of this worksheet process.

Starting at the top, working clockwise, are a series of headings that the person can complete that will help shape up the way to achieve the 'I want to' part. Going in order is important (from top, clockwise), because each section builds on the others.

Step one and probably most helpful for retaining motivation is 'Why is this important to me?'. We know that internal motivation is drawn from values, or reasons that something is important. By helping the person think through why they want this change, we help them generate their own reasons for change, rather than reasons we might generate.

Step two is about time frame: often this depends on the level of confidence the person has for acheiving their goal.  The time frame also may determine the steps the person may take, and reflect other people's actions or proceses (eg case manager). It may be helpful to revisit the time frame once other areas are completed and adjust, but it's useful to work out what the person believes is possible first.

Step three is about where the goal will be achieved - for example, at home, at work, in a clinic... This may help determine the strategies that can be employed.  Some activities can be used in one setting, but not another, while it may be important to help the person see that they can achieve in one setting before generalising to another (eg using relaxation at home to enable them to complete vacuuming, before developing the skill to self-regulate at work, where it can be much more difficult).

Step four asks about general resources the person may need. This can be revisited also, but is often the real action phase of goal setting.  It's OK to not know all the resources required - this may, in fact, be one of the sub-tasks required to achieve a goal.  So it's fine to put down 'I don't know what resources are available - I'll need to identify these as my 'next best step'' - which is one of the other steps in this process.

Step five identifies the 'people' resources the person has to help them achieve their goal. This can range from speaking to their partner, family or friends, right through to asking for a referral to see a specialist career counsellor.  If the person is receiving compensation, and has a case manager, then the case manager must be one of the 'people' identified in this step.  You, as health provider, should also be listed.

Step six is about what the person can do to recruit help from people - because it is all about self management and self responsibility.  What does this person need to do to get the help they want? Do they need to write letters? Meet with someone? Leave notes? Arrange regular phone calls?

Step seven identifies 'what are my next best steps?'. This can be about finding out resources, contacting people who can support them, maybe identifying where the goal can be carried out, or even refining the time frame.

Finally, (and next to 'why', the most important part of this process) is 'how will I know I've achieved my goal'. This is often the most challenging part of this whole process, because it provides the person with a specific way to measure achievement. This may require additional input from you as health care provider.

It's not very easy for someone to think about how they will know whether they have achieved a goal - quite often the person hasn't thought about the goal in more than general or vague terms.

For example, a goal may be 'to sleep better'.  This isn't precise enough for anyone to decide whether the goal has been achieved or not.  Remember that subjective feelings 'sleeping better' are often determined by proximal experiences (a bad night's sleep or two close to the day the person is asked about their sleep will likely influence them to say it is no better), and by demand characteristics of the person asking (a treating clinician will obtain a different answer than if the person's partner asks), as well as a number of other response biases.

It's far more effective to ask the person 'how will you (know) measure that your sleep is better?  Is it that you sleep all the way through the night, every night of the week?  That you wake up feeling like you've had a good sleep, five days out of seven?  That you no longer use any sleeping medication to help you get off to sleep?'

These latter measures help identify the different ways that 'success' can be achieved, and as a result both reduce the chance for measurement biases as well as determine just what the 'end point' will be (at what point will the person be personally satisfied with their progress?).  It's much more client-centred, as well as more easily recorded and reproduced.

Have a go at using this worksheet for a person goal for yourself.  What would you like to see different in your life?  Then work out how you'll achieve it using this step-by-step process.  Let me know how you go!

Today I thought I'd start by walking through one way I've used to help people set goals.  These goals are 'medium term' goals, that is, goals the person may want to work through in a twelve week period.

I often start by using the 'menu' approach as described in Rollnick, Mason & Butler's book 'Health Behaviour Change: A guide for practitioners'.

People come in to pain management with lots of concerns on their mind - yes, they'd love to have their pain removed or reduced, but at the same time, they'd also like to talk about medications, to sleep better, to cope with work, relationships, and to exercise. In many settings it's almost assumed that the plans the clinician have are both more important and more accurate than those the client is thinking about.

So I start with either a menu, or perhaps what we've started to call a 'Wish list'.

From this, I ask people to indicate the areas they're particularly interested in, and you will see I've left some of the areas blank - so they can fill in what they want if I've missed anything out.

Then I ask them to put these areas into priority, so we can focus in on just two or three.

Then comes the real work: how to actually turn these 'wishes' into goals and action plans. That's tomorrow's post!
Today, though, an introduction I include in the folder each person receives as part of their pain management programme:

Some quick thoughts about change

You're going to have some sessions on change and what it means over the next few weeks. To give you something to think about now, here are some notes that will help put this programme into perspective.

• Change is a process rather than an event

• Motivation is something that can change over time, it’s not a fixed characteristic, and it’s not something that can be ‘done to’ someone

• A variety of factors are identified as influencing the change-making process, two influential ones are importance and confidence

• Importance is influenced by beliefs (values), weighing up costs/benefits, past learning experiences, and contingencies

• Confidence (self efficacy) is influenced by personal experience, modelling, verbal persuasion, vicarious learning (watching others), and perceived barriers

• Change isn’t always linear, it’s common to move back and forth through various stages

• Relapse, or moving backwards, can occur anywhere – even during maintenance

• People don’t make wholesale change – they remain in two minds very often, and may be more or less ready for different aspects of pain management

• Readiness for change seems to consist of at least two components – importance and confidence

• People may spend more or less time in each ‘stage’ of change – sometimes change can be very rapid once it starts, sometimes it slows in one stage then proceeds again

Some More Quick thoughts
1. Begin by making small changes or break up large-scale changes into more manageable pieces. This can make you feel better about handling the changes you are about to make while making you more comfortable with change in general.

2. Mentally link changes to daily routines you already do. This can make changes like taking on a new habit happen much more smoothly. For example, if you want to begin meditating at home, try weaving it into your morning routine.

3. Going with the flow can help you accept change instead of resisting it. If you stay flexible, you will be able to ride out change without too much turbulence.

4. When a change feels most stressful, relief can often be found in finding the good that it brings. An illness, a financial loss, or a broken relationship can seem like the end of the world, yet they also can be blessings in disguise.

5. Remember that all change involves a degree of learning. If you find change particularly stressful, try to keep in mind that after this period of transformation has passed, you will be a wiser person for it.

6. Remember that upheaval and confusion are often natural parts of change. While we can anticipate certain elements that a change might bring, it is impossible to know everything that will happen in advance. Be prepared for unexpected surprises, and the winds of change won't easily knock you over.

7. Don't feel like you have to cope with changing circumstances or the stress of making a change on your own. Talk about what's going on for you with a friend or write about it in a journal. Sharing your feelings can give you a sense of relief while helping you find the strength to carry on.

8. Give yourself time to accept any changes that you face. And as change happens, recognize that you may need time to adjust to your new situation. Allow yourself a period of time to reconcile your feelings. This can make big changes feel less extreme.

9. No matter how large or difficult a change is, you will eventually adapt to these new circumstances. Remember that regardless of how great the change, all the new that it brings will eventually weave itself into the right places in your life.

10. If you're trying to change a pattern of behavior or navigate your way through a life change, don't assume that it has to be easy. Wanting to cry or being moody during a period of change is natural. Then again, don't assume that making a change needs to be hard. Sometimes, changes are meant to be that easy.
“There is
nothing so
useless as
doing efficiently
that which
should not be
done at all.”
(Peter Drucker, 1909-2005, Austrian born US
management guru, writer and seminal business
thinker.)

“Argue
for your
limitations,
and sure
enough
they’re
yours.”
(Richard Bach, b.1936, American writer and pilot,
from his 1977 book, Illusions.)

“We don’t
see things
as they are,
we see
things as
we are.”
(Attributed to Anais Nin, French-born American writer,
1903-1977.)

Have a great day - and come back tomorrow for 'developing the action plan'

Yesterday, if you hadn't heard, I finished my first week at a new job.  Hopefully that will mean no more privileged, insensitive, ableist comments from bosses, at least for a little while.  I'm really enjoying the new job thus far.  I'm not just doing data entry all day and I'm gaining trust from my colleagues to undertake projects on the basis of my competence, not my age or the fact that I have not completed my degree.

One of the most difficult things I'm dealing with right now though is trying to raise my partner's nieces and nephews that I mentioned previously.  Don't get me wrong, it's immensely rewarding, but at the same time some times I feel like I'm crashing and burning.  We had negotiated a bed time of 11:00 for the kids because it is summer, but my new job starts earlier and I have to be up by 6:30.  My partner isn't home in the evening, and I can never get them in bed with the lights out before 11:30.  That puts me at 7 hours if I'm lucky.  Usually though I don't get to bed before midnight.  Those of you with fibromyalgia or chronic fatigue probably know that that amount of sleep is not enough.  In fact, it's nowhere near enough.  I'm subsisting on Redline energy drinks to keep me conscious until 11:30, which is making me incredibly nauseous all the time.  Thursday, my partner's day off, instead of keeping with my usual Thursday plans I was so beat that I just lay down in bed when I got home and slept. 

Did I mention I'm out of Lyrica again and the insurance has decided that they're not going to cover it?  Because it's not a "necessity", so I probably will not be taking it anymore.  It's far too expensive without insurance.  I hate insurance companies.

Trying to relate to the kids has been a trip, too.  When they get angry, they lash out in ways that I haven't figured out how to deal with.  They say things they don't mean and react violently (hitting each other, etc).  Sometimes I just don't know how to respond.  I know it has a lot to do with things they've observed from others, but it's just so hard sometimes.  I have to say, for those of you who have kids, I have a much greater admiration.  Raising kids is no easy feat.

Hope everyone is having a great summer.

Sometimes beauty is hard to find. I look around and know that there are beautiful things around me, know that the sun through the skylights is really magical, that the way the sunflowers are leaning out of that old ceramic pitcher from my mom is precious, that the warm buzz of traffic outside my building is comforting, and all these and more are beautiful. But am I experiencing the beauty? No, not really. Can I see it with the eye inside that knows the beauty of all of life and therefor is moved to tears when it escalates to such heights as the perfectly-made bed, the keen sparkle in the eye of what can only be a lover, or the sweet equipoise of clear glass vessels stacked in a window? Almost. 

For four days I have been nearly immobilized with pain - physical, unrelenting, overtly structural pain. I can barely sit and laying flat is no picnic either, but is the lesser of the evil positions. I think about beauty in pain and am hard-pressed to find it. Intellectually, I know that there is beauty to be found. I know it. Of course there is. Perhaps it is the beauty of forced slowly. Maybe the beauty of leaning on others. Could be the beauty of time alone with my mind. These are good ideas, but not my experience. The eye is clouded. It is clouded with worry for the future, "What if this lasts much longer?", with remorse for the past, "What if I hadn't pushed so hard in physical therapy AND ridden my bike to work so much?", and a near-inability to be in the present, "It just hurts too much to be here right now." I think that really is key, that beauty can really only be truly found in the present. An inability to be here certainly renders my beauty-finder weak at best. 

I started this blog so that I could offer a little extra light to the world in my small way, and so that I would be pushed into turning my heart towards the magic of the everyday and the mind, the beauty of it all. Yesterday, I didn't even try. No entry. No light. Just a haze of painkillers and sorrow. Today, I've found a little courage to move and look, to be here, to say "when" is enough of hiding. I'd certainly like to say "when" to the pain, but that seems to be beyond my control. And so the only thing I can say "when" to is my own revulsion, my own worry-warting, my own lack of presence. Saying "when" is the most beautiful thing I have today, in whatever small amounts I can muster.

I'm feeling gushy tonight: It's gewshy not gushy actually. But maybe they'll end up being the same thing. Jax and I just got back from a nice dinner out. Eating out is exactly like Russian Roulette due to my pancreatitis. If they lied about "no butter" then I'll end up dead.

I figured out why my girlfriend's boyfriend upset me so much. BTW - since he went to clown school I call him "clown boy". It's a funny ongoing joke in my family "oh, did you see clown boy?" Or my dad will ask if I saw "clone boy" (get it - the play on words?). I'm sure that clown boy is nice - but he always says the wrong thing to me. So I moaned about his comment "you won't die from this, you'll die from something else", said as I was pacing in pain waiting for the meds to work and having a horrific pancreatic attack. I was trying not to end up in the hospital when I said it.

Mind you I was also limping from RA and truly wishing I was allowed to kill myself. Well- it made me furious because by saying "you won't die from this..." made it clear he thought I was being overdramatic. It negated my whole horrific experience. Would you like to trade places clown boy? He doesn't know the half of living with RA or CP.

I mean, and I will be graphic here, I can't even masturbate anymore since my RA is so bad. Sure I could use a vibrator but it just isn't the same!!!!

I guess I'm not feeling as gushy as I thought I was. The pain and boredom of limping has gotten to me. Pain so easily replaced by anger.

But Jax and I have had a lovely night out and he's taking a little cute snooze while I type this on my phone. Jax should be in the caregivers hall of fame. "Dealt with lunatic girlfriend-5 gold medals sir!".

Love sasha xoxo

Neuro-fascial processing or NFP is an exercise we often give or review at the end of each PT session. It is a very simple 15-20 minute technique that can have profound effects on the body.
It involves placing the hands on two specific points on the body. One hand usually, but not always, is on the area of injury or concern. The other hand goes on different “process spots” – the heart for circulation, ureters for drainage (toxicity and swelling). Lots of these “spots” correlate with Eastern medicine.
But how does it work? We don’t quite know. It is interesting, however, that multiple studies demonstrate that premature infants who are held gain more weight and do better health-wise compared to matched infants who are not. Similar to NFP, one thought is that placing your hands on your body gets your body’s awareness to the area and helps out that way. Funny thing is, it works. I have seen wonderful things happen with this technique. Remember, it only involves 15 minutes of your time and your own light touch. Bottom line, it can’t hurt.

Testimonials about NFP: Center of IMT
Aloha,
Kanoe Hook, DPT