… what would you include?

I’m a fan of using a group approach for pain management. Lots of reasons, but several that really spring to mind right now.

1. Groups offer participants a chance to learn from each other – this can be both good and not so good!  Provided the group is managed well, and both CBT techniques and the group process are attended to, participants become their own (and other’s) therapists. Participants often challenge each other far more strongly than clinicians, because they already have ‘face validity’ – in other words, they’re all on an equal ‘I’m in it with you’ level.
2. Groups enable each participant to be exposed to a broader range of issues and situations than individual therapy – as each participant discusses their own situation, it will be unique to them, but give an opportunity for the others to learn vicariously (by watching).  As each participant follows the process of identifying unhelpful thoughts and behaviours, becomes aware of different ways of viewing the situation and responding to it, they too learn how that might apply to their own situation (either now, or in the future).
3. Groups reduce the social isolation experienced by many people with chronic pain - by learning that their experience is not peculiar, that some people manage better while others struggle more, participants in a group can reality-test their beliefs about their own situation.  Courage can develop by watching others who cope well, and by helping others who are not managing so well, those who are managing develop more confidence in their own coping.
4. The therapist can use the group to generate coping alternatives, broadening out the range of options the group participants can consider.  Not all the options will be feasible, or helpful, but these can be examined in terms of the various outcomes, allowing the participants to arrive at their own solutions.
5. Groups provide opportunities for people to role play a range of different situations, and obtain feedback from a range of different people. This makes the learning opportunities afforded by groups broader than individual therapy.

Now, to be Devil’s advocate, there are good reasons for individual therapy too.  Some people don’t work well in a group setting, either because of difficulty communicating (hearing impairment, not speaking the language, or personality characteristics that make it difficult for a person to follow the normal ‘rules’ of social interaction), or perhaps because of cognitive or emotional problems.  Some people have very unique presentations, perhaps requiring specific therapy such as mirrorbox or exposure-based functional rehabilitation that most group participants might not need.  Others may have specific needs that others don’t, such as relationship problems or work problems.

What would it be like to combine both the best parts of group programmes with the best of individual sessions? In this case I’d like to set some assumptions about size of group and number of sessions/days a week.  I’d love to have a group of a maximum of 7 participants, meeting twice a week for about two and a half hours each time.  Two extra individual sessions of an hour for each participant, with input from therapists with both psychosocial and functional biases.  I’d like about 6 weeks to work with the participants, plus a couple of follow-up sessions one month and three months later.  And of course participants would also need to carry out ‘experiments’ where they use the skills in-between sessions.

Enough about format.  Onto content and approach.

Content is always contentious, but I’m sure there are at least four or five topics that just can’t be missed.

1. Goals and aims or purpose of pain management. Why participants are there, what they really want out of it.  Where the focus needs to be.  Most importantly, the functional activities the person wants to return to.
2. Helping people develop a personalised model of their pain, whether it be chronic or sub-acute/acute.  The various contributions of biology, psychology and sociology to that ‘unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.’ (IASP, 1979).  Working out the factors that particularly influence their pain and disability.
3. Activity regulation, or working out the optimal level of activity the person needs and helping them develop a plan for changing their activity pattern to achieve it.  This can mean increasing activity, or maybe reducing it, or even simply maintaining a consistent level of activity.
4. Working with resultant thoughts, beliefs, attitudes, behaviours and contingencies that affect how easily the person can make changes, and maintain them.

There will also be other common topics like:

• medication and how to use it well
• sleep and how to achieve it
• relaxation, breathing and mindfulness
• problem solving and goal setting
• communicating effectively about pain, including pain behaviour, assertiveness, intimacy
• working and returning to work

I think the main thing about pain management programmes is that they need to be applied. Either applied within the programme setting, or applied in everyday life.  As soon as people start to DO activities differently, the opportunity to observe how they work out, and to problem solve issues that come up as a result.  This will mean working with thoughts, beliefs and behaviours, and the responses of others (and other contingencies that operate on behaviour).

Applying pain management can be done is many different ways, I don’t think there is much agreement however, on exactly how this should be done.

Many programmes use exercise both as a pain management approach (yes, exercise helps reduce pain!) but also as a way for people to apply coping strategies.  The way people go about exercising offers a great opportunity to ‘catch’ thoughts as they occur, particularly fears about flare-ups of pain.

Exercising also offers a chance to use activity regulation – things like exercising to time rather than quantity, or to exercise consistently rather than according to pain levels – and doing these things almost always generates responses that need to be discussed so they don’t interfere with making changes in life.

But, doing exercise only and making no changes to how the rest of a person’s life is lived is just not worth it.  A person who goes to the gym or swims every day but is too scared to bend down to put on socks and shoes, or sit for more than 3 minutes, or pick up a pingpong ball when playing with the kids isn’t really managing pain and living life.  People can be very fit but still ‘disabled’.  So IMHO it’s really important to work on a daily routine that starts to include activities the person wants to do – AND needs to do.

Tomorrow I’ll add to this wish list for a pain management programme – and later in the week I’ll add in the literature to support my choices.

I have to leave for the new job in an hour. I’m not ready for this.

I spend my weekends recovering. Normally, by the end of Sunday, I’ve just about recovered from the exhaustion and aches brought on by the working week. Despite feeling MASSIVELY CHEATED by the fact that I never get to enjoy my weekend, I feel almost human again physically. I’m still not perfect–far from it–but I don’t feel quite as dead on my feet as I do by, say, Wednesday or Thursday.

Not this time. This time it feels like I haven’t had a weekend at all.

My sacroiliac area is hot, stiff, swollen and so painful it’s been waking me up throughout the night. This area has been bothering me for a while, but rest assured by the time I get to see the rheumatologist the heat & swelling will have gone, so he can blame it all on fibro without any further investigation!

My back hurts all over. Actually, everything hurts, including my stupid kneecaps, and unsurprisingly, I’m exhausted. I also have this awful sickly feeling in my stomach and throat and am worried I may throw up. I think that part might be anxiety.

I want my old job back with my old manager & my old co-workers who understood if I had to crawl into work late, or if I just had to sit for a bit to recover from the journey in, or if I was so tired I couldn’t quite summon up any bright & bubbly cheer.

I can’t face new people. Not today.

Plz kill me now?

posted by Jeneli at wordpress in case you were thinking of stealing this post as well as all my others, rubbish auto-blog I won’t deign to name here.

I come awake with a start and shudder.
Sleep has fled.
I am alone once again the dark.
Alone to face hours without the sun.
Once again.

In the vague recesses of my mind,
I remember sleeping at night and waking after the sun.
At least I think I do.
Those days are so far removed,
So very long ago.

I make my way out to my dark throne,
Spied upon by the aqua screen of my only companion.
It’s single eye sees my pain,
My shame. My weakness.
And lights to show me a window on the world.

I make myself a hot drink and grab something to eat.
I try and make myself comfortable.
A lost and futile quest,
But still something I attempt every day.

Sitting in the dark, the screen of blue before me,
The sharp edge of the desk cutting into my arms,
I tap my way out onto the worldwide scene.
Wander my way out into the virtual freedom before me.

The first thing I check is the weather.
Funny that, in that I am not apt to need to know
The temp or weather outside my self-imposed cell.
I never really get to see it anyway.

Next I reach out and vibrate those thin silver threads
That bind me to like souls out there on the web.
Hoping that we can touch base. Talk.
Just be together via the interweb for a short while.

Touch. Vibrate. Gentle tug.  Harder tap.
Nothing. No response.
The web is dark. Silent.
*sigh*

So I sit here again in the dark.
Staring at the blind eye of the world.
Wondering if there will ever be a time,
When I will awaken after the sun…..

“We who have fled to take hold of the hope offered to us may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain where Jesus, who went before us, has entered on our behalf.” (Hebrews 6:18-20)

Hope that is an “anchor for the soul.” I need this anchor more than ever before. Don’t you? The news of the world is scary; recession, incomes that are shrinking, and for many of us, our health and the rising cost of health care is a major worry and stress.

But think about this verse. “We have a hope offered to us and may be greatly encouraged.”

I need encouraging, and I have written out these verses and taped them near my windowsill by the sink. I can read them when I do dishes, cook, watch the deer in the yard, or even the sunrise.

“We who have fled to take hold of this hope may be greatly encouraged.” This is past tense! We can claim this hope and be encouraged NOW!

Listen dear friends, and be encouraged. When the cost for our doctor visits, and medications keep rising, and we face hard decisions about our healthcare; when the pain is great and our fatigue is overwhelming, we have this hope. This is for right now, as an anchor for our souls. This is an anchor that is firm and secure.

This anchor is bigger than Congress, bigger than the recession, and bigger than the drug companies. This is an anchor that enters the inner sanctuary behind the curtain, where Jesus, who went before us, has entered in our behalf (verse 19).

Jesus went before us. This has already happened. We have reason for encouragement and hope.

Romans 5:5 “And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us.”

About the Author:
Sandra Platt is a Minister’s wife and mother of two College aged kids. She lives in a beautiful rural area of Indiana. She has had Fibromyalgia for 18+ years and now has Neuropathy and MS. She cherishes the friendships she has made through Rest Ministries. You may contact her through the Sunroom.

1:41 am Saturday night.  On a typical Saturday night I would be coming home from dancing right now.  Tonight, I had to stay home and recover.  I saw my first ‘on demand, pay per view’ movie with my mom…’500 Days of Summer‘ and I must say, I really enjoyed it.  It was very cleverly done.  I was about love and accepting that not always do two people want the same thing. When the time is right, the right things will come.

Karma Dharma is by my side as always.  I could not ask for a better cat!  Tonight I held the bunny, played with the rats, brushed Simba my parents cat, fed the two stray cats and all the outside birds.

Today we had to get all of the trees in the backyard cut and trimmed as one was falling way over into the street.  It looked quite bear to me, but, we also ordered at least 15 new trees to put around the back so they could grow together and create a ‘hedge’ to block out the sounds of the street behind.  The birds will be happy when they start to fill in. There was only one tree that could not be trimmed.  It is protected by the city and it is some kind of oak tree.  I love plants.  They are up there on ‘My Top 10 List of Favorite Things.’  If you have not figured out by now…animals are at the very top.  I would get in trouble if I were to say they were my #1.  I could and would never live my life without animals!

Good News:  I talked to Tony and found out that so far after talking to two orthopedic surgeons,  he might not be needing an ORIF (open reduction internal fixation) surgery after all.  That is what I had.  It is when they put metal in your body to fix it up so the break can heal properly.  They will further MRI his ligaments and ’soft stuff’ to determine what will need to be done. So, he too is working on healing his body.  He did say though that he would speak ‘in front of a group’ as soon as I wanted him to.  I thought it might be a good idea if we could make a PSA (public service announcement) video an post it on the internet sharing the importance of Crosswalk Awareness.

Again, I am exhausted after having done lots of little things today and work on recovering.  I am trying to ice my leg right now, but the ice pack is having a hard time getting through the thick layers of bandages.  My leg will be happy next week after my appointment when the doctor removes the bandages and trusts that the scar is going to be safe enough not to open up…then, it will really feel the ice.  Oooh, how I have grown to love icing my leg!  Cold, but comforting.

So, again I will sign off with my Crosswalk Awareness PSA: “Drive like you know you can hit someone!  Walk like you know you can be hit!  Through awareness, we can save a life…or a lifetime of pain!”

Photography & Arthritis

Photography & Arthritis:  There’s got to be a link.  No, no, not a medical link…Don’t think I’m that totally crazy to suggest that sort of thing, LOLOL! ;^} )

I’m talking about a link (the CHALLENGE of) between HAVING Arthritis, and, DOING Photography.

It’s quite difficult sometimes to even think about doing photography when I’m feeling pain from my arthritis.  Nevertheless, the overwhelming drive to be creative…and to be a CREATIVE in the face-of-pain, is what makes even the “Arthritic Photographer” sally forth in the quest to pursue and to capture a tremendous capture.

Click HERE, to see the rest of the blog entry.

A friend of mine passed on an interesting article from the New York Times about migraines. (I’m posting it as a “special weekend edition,” as I don’t know how long the article will be freely accessible online. With the newspaper industry the way it is, I think the NY Times charges for older articles.)

“Some early data suggests that if you let headache pain go without treatment it can lower your threshold for pain down the line,” Dr. Saper said. In other words, untreated headaches can make you more vulnerable to pain.

On the other hand, if you are taking over-the-counter or prescription painkillers two to three days a week for months on end, the medications you are taking to dull pain could worsen your condition. You may then start to experience medication-overuse headaches — a risk for migraine sufferers.

I think this is one of the really tricky things about medications. Not only do you have to find the right medication that works for your body, you also have to figure out the right dosage. How much medication is too much? Am I able to lower my dosage safely, or will I have renewed symptoms?

There is also a lot of controversy – particularly in alternative medicine settings – about taking prescription medications at all. I know many people are uncomfortable with taking medications, often particularly with taking painkillers. I can understand this, and yet many people also don’t have a choice about whether or not to take their medications. For example, someone with HIV/AIDS should not go off their anti-retrovirals.

It’s particularly interesting to see this article’s mention of the positive/negative effects of medication on chronic pain. Pain is such a nebulous thing anyway. Different people have different pain thresholds, and chronic pain takes the issue to a whole new level.

How do we treat pain in our society? I think it’s certainly telling that we have medications called “painkillers.” Yet untreated pain, as mentioned in the article, can negatively affect a person’s quality of life. Certainly, having pain all the time – particularly with no effective coping strategies or pain management – is really, really terrible.

Researchers are learning that pain and the medications used to treat pain can potentially change the biology of the brain.

Receiving good treatment can help you function more effectively, and will probably also save you money over the long term. And if you have health insurance, it should cover most of the relevant medical evaluations and treatments.

The question of universal health care aside, I think the key thing this article mentions is “good treatment.” The article continues by talking about effective strategies for talking to your health care provider about migraines/chronic headaches, as well as some supplements migraine sufferers may find helpful if they’re going the “alternative” route.

I’m glad that researchers are studying the effects of medication, unmanaged/untreated pain, and treatment strategies on migraines. I’m interested to see what further studies reveal. I feel like the study and article raise a lot more questions than they answer.

Ahhh, Saturday is here again!  What a week I had, but it went by so quickly, and now it is time to switch gears and take a little time out for myself.  The house is quiet, my boys are gone, and the only things keeping me company are my kitty and a PVR full of shows that I haven’t had the time to watch yet.  Today is a day to do some couch surfing, tv watching, coffee drinking, and if I have the energy maybe a hot bath and a new book….. wow, what a lazy day!!  I try not to feel guilty for days like today, because they are good for me.  It gives me a chance to decompress, and restore some of my energy so I can get through the following week…. Saturday is the only day that I don’t have my son, and that is still very hard for me.  So instead of brooding and missing him every weekend, I try to put the focus on what I can do for myself that will only enhance the time I spend with him for the rest of the week… So a happy and well rested mom makes for a happier child… or at least that is how I justify taking the day off anyhow

Living with my pain can be a slippery slope.  I can manage quite well for weeks on end, and all it takes is overdoing it on a particular day, and it can send me spiraling down into the depths of darkness in a matter of hours, and then it takes me weeks to catch up to where I was.  It is a short trip back to the starting line, and a long jaunt back to where I was.  It truly is one step forward and three steps back some days.

I am guilty of pushing myself too hard at times.  It helps immensely to have a partner in life that is always aware of how I feel and how hard I push… he is always the first to tell me that he thinks I am “overdoing” it, but what mother doesn’t?  When I start pushing the envelope, and start feeling that I need to back off in order to preserve myself, I consciously make a decision to get back to basics… and this is what that means to me….

MY WEEKEND SELF-CARE REGIMEN

- Eating properly –

This means both quality and quantity of food.  I am so guilty of letting my pain affect my eating habits.  There are days that I don’t eat at all until 9 at night, after my son is in bed.  I forget to eat for nourishment and restoration and consider it a chore.   What are my healthful comfort foods?  What is it I crave?  What minerals and nutrients am I lacking in my diet?

- Sleeping-

If you have chronic pain, you know all too well how challenging this is at the BEST of times!  And during difficult spells, sleep becomes close to non existant.  REM sleep phases are very crucial for repair and physical relaxation.  Most days I get 2-4 hours of sleep. I have sleep medication to help me with this, but I don’t like taking it, especially when my son is home.  I fear that I won’t be able to wake myself up if he needs me.  So I reserve taking it for Friday nights, and I let myself sleep in on Saturdays.

- Bathing-

Well obviously we do this every day (At least I hope we all do! HA HA!)!!  But how many people consider bathing a chore, just like everything else we do in a day?  Taking baths for me is usually a necessity each day to get myself moving, so it has almost become a chore for me.  On the weekend I make my bathing ritual to be about nothing but relaxation and time for myself.  I use my favorite bubble baths, gels, and lotions.  I turn the jets on…. I take a glass of ice water and a book into the tub with me.  It is like my own spa treatment!

- Smiling -

This might seem to be a strange ‘basic’ need, but it isn’t really.  We all NEED to smile…. And when you are in pain all the time, it is hard to smile some days.  When we grimace we  tighten and brace the muscles in our head, neck, and shoulders.  Frowning can cause us more physical pain as well as not doing much for our emotional state.  So smiling is insanely important.  Getting back to basics, I ask myself what it is that will make me smile in that moment?  Is it looking through photographs of family?  Is it a call or a text message to a friend?  Is it putting in my favorite movie and cuddling up on the couch?  I methodically concentrate on relaxing every muscle in my face and neck, and try to turn that frown upside down!

and last but not least….

- Spiritual fulfillment -

Don’t get me wrong, I am not going to start preaching anytime soon!  I am not talking about religious fulfillment…. It doesn’t matter what doctrine you follow, I mean taking care of your inner spirit.  What makes you soul feel good and free?  When pain becomes the chains that bind you physically, what is it do you need to ensure that you don’t feel spiritually confined as well.  Does that make sense?

For me lately, it is this blog and my Facebook page…. It does my soul wonders to know that the connection I can create with another person is considered valuable or meaningful.  Simple words of encouragement and support change my perception of the physical pain I am feeling.  To go from feeling useLESS to useFUL is a magical feeling for me.

In my everyday life I am spiritually fulfilled by my son, as ALL parents probably feel, but I am talking about something that is all your own.  If you remove all outside sources, what fulfills YOU as a person… not as a mom, sister, coworker, dog-walker, cleaning lady and chief bottle washer   Remove all the hats you wear each day, and when it is ONLY you that you need to worry about, ask yourself what it is you need to fill up the tank in your soul!

How are YOU taking care of yourself this weekend?

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin.

I’ve been feeling frozen, lately. Standing still when I should be moving; avoiding when I should be embracing; staring into space as if **** was somewhere out there in the universe. It’s not the weather (Mon payes c’est l’hiver), meds, or chronic pain. This suspended animation comes from somewhere deeper like the chasm-cracks in glaciers; a slatey abyss of inaction and immobility. There is an underlying sense of panic; the unspecified dread that squashes my core. A fear with no rationality or logic, or substance or reality. The panic and the frozenness seem bound together in some sort of ritualized dance. I step, I hover, I stand; going nowhere. There is so much and so little to do. If you don’t start something, then you don’t fail at it. But the anxiety of not-doneness permeates the life landscape, and I am frozen and in a panic.

The Pain Patient’s Bill of Rights allows you to 3. Make mistakes; 4. Do less than you are humanly capable of doing; 5. Change your mind; and 7. Take time to slow down and think before you act. I’ve slowed to a crawl through jello unable or incapable of digging myself out with a spoon. Inertia, a frozen moment in time, not moving forward: one step forward, two steps back. The bill of rights doesn’t cover inertia, does it give me the right, the power to be frozen solid? If only my thoughts would freeze into a positive sculpture, not the darkening chasm of fractured glaciers.

The frozen landscape engulfs me: I can breath, feel heart beat, blood flowing, mind functioning, but still inertia. Even writing this short blog took days; words thought out in drifting dreams hesitate, stutter, swirl off into the snow drifts, slide along the frozen stream, just out of reach but visible.

Time does not stand still, only I do. Time to go to the library to connect with the cyberworld. Time to move, time to initiate, time to only take steps forward. Only time will tell if I can fulfill the effort.