Sensory Processing and Pain

In my post last week, I did some comparing and contrasting of sensory defensiveness in people with Fibromyalgia and people on the Autism spectrum.To sum it up, the main similarities are the tendency toward over-sensitivity to light, sound, and touch. The main difference is that those of us with Fibromyalgia acquired it after our neural pathways matured, and our sensory systems had time to organize. We learned how to respond to things, based on experience and social norms, so when we got Fibro, we were able to adapt to it with varying degrees of success..People on the Autism spectrum, on the other hand, grow up with their disorder, and must learn to live in a society that does not share or comprehend their over-sensitivities.They may not be able to communicate their discomfort, or they may not realize that others experience the world differently.
Keep in mind that this is very much an over-simplification of the situation. Everyone is different, not all people on the Autism spectrum have sensory defensiveness, and not all people with sensory defensiveness have Autism. In fact, there is a distinct disorder known as 'sensory processing disorder'.
One of the areas of sensory study that I find most fascinating is 'habituation'. It is related to the word 'habit'. When something is a habit, it is automatic, we don't even think about it. Habituation is similar. When our body is bombarded by the same sensory input over and over, our body stops responding to it, and just ignores it.This is why you don't constantly feel your clothes, or why people who live near the train tracks don't hear the train after awhile.
Imagine what life would be like if we did not have this shut-off valve in our system? We would be constantly bombarded from all directions with sounds, smells, sights, we would feel out clothing, the air, etc. It would be overwhelming. It is believed that this is what life is like for some people with Autism.They are so overwhelmed that they shut down, and don't respond, because they don't know what, of all the input,  to respond to.
People with chronic pain can have a version of this, where the pain signals continue bombarding, and the habituation mechanism fails to kick in to shut off awareness. This may be due to the intensity of the pain signal, or in the case of Fibro, the pain signal mechanism itself is faulty.
Stay tuned: my next post will be on some things you can do when your pain signal won't shut off.      

Think Outside the Box

This is your chance to think outside the box and have some fun. This activity/exercise is good for getting your creative juices flowing, or a good procrastination activity, but it is also good as a distraction from pain. It is a simple idea, and can be done in infinite variations.
Take a piece of paper (or two or three...) Draw on it four or six or eight squares. It doesn't matter how many or what size. After you do it a time or two, you can decide what feels right to you. I like six squares, in two rows of three (or three rows of two, depending on how you orient your paper). Now- Put on your thinking cap, and think outside the box, literally. What is the box, and what would you find outside it? Draw whatever comes to mind around the first box. Now go on to the second. Try not to be critical of either your ideas or your drawing skills. Any idea is a good one, even if it doesn't seem like it..Imagine looking down at it, straight at it, or up at it.Imagine it different sizes, different colors. Different ideas come to mind.
So, what are some ideas to get you started? It is a house, and there are bushes and flowers around it, maybe a swing-set, (Don't get caught up in the fact that this is an overhead view.) You can even add what you would see on the surface of the box, in this case, the roof, maybe a chimney.  It is a shoe box, with a pair of mismatched shoes. It is a toy-box with the toys all over the place...You could also see the squares as buildings in a city, and connect them with streets, sidewalks, cars, people, dogs, etc. Let your imagination wander. Have fun.
Some variations on this are thinking about what would be inside the box instead of outside (this is actually easier, so if you are having trouble thinking outside the box, think inside instead). This could be a toy-box, shoe box, or house, or a deck of cards (draw any one you want), a book, a painting, a candy bar, etc. You could do the same thing with circles, or ovals, or rectangles or triangles, or heptagons.
That brings to mind a game we used to do as kids, a similar idea to this. One person makes a scribble on a piece of paper, the next person has to look at the scribble and find a part that resembles something, and using more crayons, makes it more recognizable. You could also do this by yourself.
Get absorbed in activities such as these, and for many people, their pain fades.The more detailed and absorbed you get, the more the pain will fade. Give it a few tries. It may feel awkward and difficult at first, but it should get easier.  

Fibromyalgia Organizations

Within the past five days, I found out about the demise of one Fibromyalgia organization and about the existence of another one that I did not know about. Since some of you out there in Readersville share this lovely malady with me, I thought I would share this info with you. First, I got a postcard from the Fibromyalgia Network that due to deteriorating health of Kristin Thorson, the editor, they are closing up shop. They have been in existence for 25 years, providing information and support for people with Fibromyalgia.
Their website, http://www.fmnetnews.com   has lots of information about fibro, about coping, and a good number of links to other helpful sites. Kristin dedicated her life to searching out and reading research regarding Fibro, and published it, along with helpful tips, etc., in a quarterly newsletter. I will miss reading it, and I wish Kristin all the best in her coping and quest for healing.
The organization I just learned about- today, as a matter of fact- is the National Fibromyalgia and Chronic Pain Association (NFMCPA).  Their subtitle is A Global Community for Support, Advocacy, Education and Research.  I have just begun to explore this website, but it appears that there is quite a bit there to explore. One area I find especially of interest is a long listing of research projects looking for participants. I have been involved with 3 projects so far, and encourage everyone to get involved. The only way they will learn more about our illnesses and how to treat them is if they do research, and that requires people with these illnesses to participate. The website has a long listing of overlapping conditions (I checked, Sjogren's Syndrome is listed). They also publish a magazine 6 times per year, called Fibromyalgia and Chronic Pain Life.  You can read it online for $2.00 an issue, but I chose to get a print subscription, because I find it easier to read. You can get the print version for $6.95, which includes access to the digital version, as well as a monthly newsletter, and email alerts.
I know there are other Fibro related organizations and websites, but these two have been tossed into my radar this week. If anyone has a Fibro or pain related org. or site they would like to recommend, post a comment, and I will check it out.

Days Like This

“Mama said there'll be days like this, days like this my Mama said...” So says a song by the Shirelles way, way back in 1961. About 30 years later, VanMorrison did his own song with a similar line in it. Actually, it wasn't my Mama who said that to me. It may have been my rheumatologist, but more likely it was someone from a Sjogren's Syndrome or autoimmune email list or forum that I subscribe to. After all, we are the ones who really know about 'days like this', and support each other through them. (To be honest, I wouldn't mind having less personal knowledge of 'days like this', but then I probably would be less useful to the readers of this blog).

I went to bed the night before last with all kinds of plans for yesterday, from collecting trash along the creek (it washes down when there is a lot of rain or snow), to working on a personalized Seder (service) for the Jewish holiday of Passover, to vacuuming the downstairs of our cabin (I did the upstairs yesterday). I woke up in the morning with pain along the side and back of my neck, which made holding my head erect difficult. So I took a muscle relaxer, and a headache pill, and I took it easy. Today didn't start out much better, but I am feeling somewhat better now.

'Days like this' are the days when you feel sick, where 'business as usual' just feels way too difficult. If you have chronic pain and/or illness(es), you likely have 'days like this', maybe occasionally, maybe most days. Luckily for me, mine are only occasionally at this point. When I do feel this way, I have learned that it is okay to give myself a day (or 2 or 3) off to take care of myself. I try to eat healthy, to get some exercise (gentle stretches, short, easy walk, outside if possible). I let myself take a nap, which I normally don't do. Yesterday I took a short walk outside. Today I pushed myself to go to the Natatorium ( the name of our city's gym). After 5 minutes walking in the water, with every step feeling like an uphill climb, I gave in. I gave myself permission to stop, and I used the hot-tub instead, the first time I used it in my 2 years of membership. 

It is easy to feel guilty for taking time off, but everyone gets sick sometimes.The key words here are accepting yourself as you are each day, giving yourself permission to focus on your own needs, and being at peace with yourself. The commercial is right: there is a app for that. (Sorry, I couldn't help myself- as soon as I saw the 'a' in 'accepting' and the 'p' in 'permission', I just had to find another 'p' word so I could spell 'app'.)    

An Artist Returns

When I started this blog over 2 years ago, I intended to write about my art at times, as it was a major part of my life, and an excellent way to cope. That didn't happen, because I have not been doing much art these past two years. When people have asked how my art was going, I hesitated to answer. I told them that I was putting my creative efforts into writing this blog, and running my Chronic Illness/Chronic Pain Support Group. That's only part of the truth.
Every once in awhile, I go into an art funk, where I let it get to me that I am not selling much of my art. I start thinking "Why am I bothering to make this stuff if it is just going to pile up?" I had quit doing art festivals because they were too hard on me physically, and the amount of money I made at them did not make it worth hiring someone to help. I have my art gallery, which was actually more my husband's idea than mine. My art had lost its magic for me.
In recent blogs I have written several times about my increased pain issues, and about a necklace pendant I bought with the Hebrew word 'Tikvah', which means 'Hope'.  A friend suggested last week that maybe I needed to do some art. Last Saturday I was in bad shape, fearing I would end up as a patient on the psych ward where I work as an occupational therapist. I went into my studio and started to design a piece that intertwines the words 'Tikvah', in Hebrew, and 'Hope', in English. I worked on it for several hours Saturday and again on Sunday. As soon as I sat down at my drawing table, I felt better. I still hurt physically, but emotionally I felt the anxiety and depression dissipate. The physical pain is no longer as vast and as all encompassing.
I remember now- I don't create my art for other people, though if others like it, and better yet, buy it, that is a bonus. I create my art for me. It feels good to create. When I am working on my art, I am focused, 'in the zone'. It is almost like meditation for me. And in the end, a thing of beauty exists that never existed before.
I plan to share my art with you, including some 'how to's'. Meanwhile, what is your art? What do you create? What gets you 'in the zone'? What heals your emotional pain?

Prayer for Healing

Prayer can be a powerful force*.  I have heard about studies that show people improve when others are praying for them, even if they don't know about the pray-ers. On the other hand, we all know of people who have gotten worse, or even died, despite being prayed for. I am not going to attempt to define prayer, that is way beyond the scope of my expertise. To me, though, prayer is more about trust in the process, than that any specific outcome will occur. If prayer had a direct, 1:1 cause and effect with outcome, none of us would have chronic pain or illness. Our prayers to "make it go away" would have done just that, and we would have been cured.  Prayer, then, must have some other purpose.
I would not describe myself as religious, but we do attend Sabbath services at our temple every Friday night, and a shorter service and Torah study session every Saturday morning. One part of these services I find especially meaningful is a prayer for healing. Before we sing this prayer, our Rabbi asks for any names of people we would like to have the congregation pray for. A few times, when I have had a specific issue going on, my husband has mentioned my name. Otherwise, I add my name silently. Many people know I have chronic pain and illness issues, but I don't want to draw attention to myself every week.  A good friend has prostate cancer, and also does not want to draw attention to himself. When our Rabbi asks for names, he and I will make eye contact, and incline our heads towards each other, in this way adding each other's names to the list without doing so publicly. Or, if we are sitting near each other, we may gently and unobtrusively tap each other on the arm or leg. Another friend recently started having some major health issues, and we quietly have added her to our little 'prayer circle', though I am not sure she knows this.
I have found this intimate acknowledgement of the need for healing to be very powerful. I wrote a piece last year on the difference between healing and curing.  Those of us with chronic illness may never be cured, ie, our illnesses go away, but we can still heal, ie, be more at peace with our illness, and in that way, live better with it. I have some symptoms that never go away, others that may be with me for days or weeks or months, and by the time they dissipate, others have taken their place. (My body is an ever-changing source of amusement.) The prayer for healing reminds me that I am not alone in this journey. I have companions and supports, human and otherwise. That knowledge alone helps me get through the tough times, and meanwhile, the prayer is out there in the Universe, working its good.  

*Disclaimer: religion is very personal. My beliefs are my own, and I have no intention of convincing anyone to believe as I do. If I have unintentionally offended anyone by my thoughts shared here, I am sorry. That also was not my intent.

Have Cane, I am Able

I bought a cane today.  I was at the drugstore, and they had a display of canes in different colors and patterns.  That is not what I went there for, but the display caught my eye.  I found one I liked, in a multi-color butterfly pattern, and bought it. No medical professional has ever suggested to me that I  use a cane, and my balance is good, but I tend to have alot of foot and leg pain.  I started with bursitis in my left hip about 25 years ago which never went away, and have had a variety of other issues along the route.  Most recently, the plantar fasciitis that I had for about 9 months last year now is back.      
A cane is sometimes thought of as an old person's tool, a sign that the body is giving out. (In history, canes have been used as fashion statements, for punishment and for self defense.   I found a website that touts an exercise/self defense program called "Cane Fu'.)   Though I got my cane because my body is giving out, I choose to look at it a different, more positive way.  I have had several episodes lately where the pain was so bad I wanted to sit down and cry, and never put weight on that foot again.  That wasn't an option, and I don't want it to be.  I want to continue to be able to go places and do things.  I am hopeful that the cane will  take some of the pressure off of my foot, making it less painful for me to walk.
This weekend is my youngest son's graduation from Case Western Reserve University.  Generally, when we are on campus, we do alot of walking.  I don't know from one day to the next how my foot will feel, and I tend to worry about the 'what if's'.  Using the cane will make it easier for me to get around on campus.  Knowing that has helped put the 'what if's' to sleep.   I'm not giving in to a body that is giving out.   My cane is for mobility, to help me maintain my freedom.  I plan to stay mobile for many more years, using whatever tools it takes.

Communicating about your Illness

I just read an article about programs at The Gathering Place in Cleveland, Ohio that help children cope when a family member has cancer.  The Gathering Place has a variety of good programs that help not only the person with cancer, but also the whole family.  When one person in a family becomes ill, it affects every member of the family, and changes the dynamics of the family as a whole.  This particular article was about cancer, but this is true for any illness or injury.
If you have chronic pain or illness, you have likely noticed that people treat you differently.  Maybe they tiptoe around you, or leave you out of the loop, or think you are faking.  There are many other possible ways that you may be treated by others who aren't sure how to relate to you now.  This article included helpful suggestions for  how to discuss your cancer with your children (and other people).  These suggestions, with a few minor changes, are good advice for any of us, in relating to our loved ones about our illness.  Here are nine suggestions from the article, the parentheses are my additions :
1.  Use the word "cancer" (or Fibromyalgia, or Sjogren's Syndrome, or whatever it is you have.  Their point is that cancer is a very emotion-laden word, using it will help to normalize it.  My point is that by using the name of whatever you have you will help to educate people about it.)
2.  Don't try to hide it. (If it affects you, it affects them.  Trying to hide what you are going through leaves them out of your loop.)
3.  Be specific about which body part(s) is (are) affected.
4.  Ask them what they think cancer (Fibromyalgia, etc.) is.  This gives you a chance to correct any misconceptions.)
5.  Explain what will happen next.
6.  Tell them there will be good days and bad days.
7.  Reinforce that you still love them.
8.  Don't make promises you may not be able to keep.
9.  Don't limit it to one conversation.
I would add a few other thoughts:  Keep the doors of communication open.  Let others express their thoughts and feelings about what is going on.  Let them know you recognize that your illness impacts their lives, not just your own.  Express your appreciation of their support and for all they do for you.  The key is not to dwell on your illness, but don't be secretive about it, either.
The article was titled 'Helping children cope with a loved one's cancer', published in the spring 2012 issue of Balanced Living magazine. 

   

Finding Joy

I am involved with a lovely group that meets about every month, on the Tuesday closest to Rosh Hodesh, for lunch.  Rosh Hodesh is Hebrew for Head of the Month, the first day of each month of the Jewish calendar.  For reasons you can probably figure out, this mini holiday is associated with women, and throughout the world there are groups of Jewish women that meet once a month to celebrate in different ways.
My group studies a little bit of Kabbalah (Jewish Mysticism), talking about various symbols and energies related to that month.  The month that just started is Adar, the month in which the holiday of Purim falls.  Purim is a joyous holiday, one of several Jewish holidays that celebrate the survival of the Jewish people despite the efforts of various oppressors.
Sometimes at our gatherings we are privileged to have Rabbi Lee Moore participate.  She brings her guitar, and leads us in songs that bring the spirit of the holiday alive. The energy of Adar is 'simcha', often translated as 'joy'. Rabbi Lee told us that 'joy' doesn't really express the true meaning of the word 'simcha'.  Adar is not a feeling of "Happy, happy, joy, joy" all is right with the world.  It is rather a feeling that no matter what, you can have joy in your life.
The Purim story does not tell of the Jews being scooped up and brought to safety.  We had to fight for our lives.  Looked at another way, we were not mowed down by the enemy, but were given the opportunity to defend ourselves.  We did, and we survived.  There was destruction, there were deaths, but we survived, and, no matter what, we continue to survive.
I really connected with this explanation of the word 'simcha'.  I have had chronic pain for about 25 years.  I have had fatigue off and on for about 10.  I have had various other issues for various lengths of time, including gastrointestinal problems, hypothyroid, dryness, and on and on (or so it seems).  I have had some depression, as do many people dealing with multiple and long lasting medical issues.  No, all is not right with my world, but, no matter what, there is joy in my life.  There is, because I make it so. I refuse to let my maladies win.  I fight to keep my body in working order.  There has been destruction (of the moisture producing glands in my body, thanks to the Sjogren's), but I survive.  For that, there is reason for joy.

The Face of Pain, Or, Face Your Pain

My husband and I had one of our rare disagreements a few days ago, and it involved people in pain. I had just finished reading the September/October 2011 issue of Arthritis Today. He picked it up and commented on the picture of Carrie Ann Inaba (A Dancing With the Stars judge, who has spinal stenosis) on the cover. “She doesn't look like someone with arthritis” he said. “What does someone with arthritis look like?” I asked. “She's too young and healthy looking,” was his response.

I was surprised that my husband would make such a stereotyping remark. He is a psychologist, with many patients who have Worker's Comp injuries and/or other chronic pain issues. I thought he would know better. It is this kind of thinking that leads to people with handicap parking placards who are able to walk being accused of cheating the system. Many of us with invisible illness run into disbelievers because of stereotyped thinking of what a 'sick person' looks like.

He did have some valid points, though. One is that when we think 'arthritis', we are more likely to think of our grandmothers than our daughters, even though we know there are kids with arthritis, too. The other point he made is that many people with chronic pain can't work, so can't afford (physically or financially) the things she does to cope.

So how helpful is it to have a young, vibrant person on the cover of a magazine that is read more by people who are older and less able? On the one hand, it can make us feel old and worn out in comparison. On the other hand, it can give us hope that there is still life left to be lived for all of us. Or, it can just be an interesting human interest story, a glimpse into the life of one person and how she copes with her issues. It is a reminder that we older folks (I am 54, older is a relative term) don't own the market on chronic pain and other illnesses. I know many people, young and old, who have chronic pain. Each of us deals with it in our own way.

Personally, I think a story like that of Ms. Inaba gives me encouragement. She does not let her pain control her life, and neither do I. I do my best to keep the pain to a dull roar that I can push into the background, and go on with my life. I know not to overdo it, but I try not to underdo it, either. I know my body well enough to know if I am doing something that may send me into a tailspin, and I back off.   I know that, though some activities may increase my pain, they are not actually causing any damage, and that I can tolerate.

Moral 1: You can't tell a magazine by its cover story. (I just wanted to say that, 'cause I like the sound of it).

Moral 2 (The real one): No matter what your age, no matter what your condition, there is hope. Know your body. Respect your body's needs. Know when to push forward, and when to back off. Your body is depending on you to treat it right. Don't let it down.

Pain Does Not Equal Harm

Our perception of what pain is greatly affects our experience of pain.  The way pain is meant to function in our bodies is as a warning sign that there is danger, and we need to take action.  It is very beneficial if you have a stone in your shoe.  Pain tells you to get it out before you walk farther.  Without pain, you might leave it there, not realizing there was a problem until you took your shoe off later and found a hole in your foot.  That is why people with decreased sensation from peripheral neuropathy and people born without this pain mechanism need to be very vigilant about monitoring their bodies.
Chronic pain is a malfunction of the system, and has no functional purpose.  It would be nice if we could say, "Pain go away, I don't need you", and it would.  (That is for a future post.)  Since it isn't that easy, we need to find other ways to cope with the pain.  One that I am working on is changing my perception of pain.
Pain does not equal harm.  In other words, I have pain, but that does not mean that there is any damage occurring.  I recently had surgery on my hand for trigger thumb.  I kept the big bandage wrapped around my hand for the first three days to remind myself to be careful, and to prevent damage to the newly cut tissues.  Now I have a waterproof band-aid on it, I use my hand, but continue to be careful how I use it.  Several times a day I get pain, from the bruising and the still healing incision.  I remind myself that this pain does not mean that any damage is occurring, and this makes the pain easier to ignore.
Please don't get me wrong.  The pain is real, and sometimes it takes awhile for it to calm down.  Sometimes I have other pain that does not calm down for hours or days, and I know there are many of you out there with pain that never calms down.  I am not minimizing the pain, or saying if you ignore it, it will go away (I wish!) 
Think about it this way.  Your dog barks to go outside.  You know if you don't let him out, you will have to clean up the mess he makes on the floor.  He also barks when someone walks by the house, if kids are playing nearby, if it sees a cat, etc.  You don't jump up every time he barks, you learn to differentiate which barks you need to respond to, and which you can ignore.
Now transfer that thinking to the pain.  You sense the pain, and ask yourself, "Is this pain telling me something important that I need to respond to, or is it just barking its head off for no known reason, as chronic pain tends to do?"  If it is just barking its head off, responding isn't going to make it better, but it will keep you focused on the pain.  I can't speak for you, but I would rather focus on other things.
Give it a try.  If your pain is just barking its head off for no known reason, and there is no need to respond to it, don't.  Notice it, but don't focus on it.  Focus your mind elsewhere.  Try to tune the pain out, like you would a barking dog.  Let me know how it works for you.  Give it a few tries if it doesn't work the first time  A change in how you perceive your pain takes some practice.

Positive Thoughts on Chronic Illness

Yesterday in my Chronic Illness/Chronic Pain Support Group, we talked about Managing Emotions.  Huge topic. One thing that I did was to have everyone take 5 Post-it notes, and on each one, write an emotion they have or have had related to their pain or illness.  I had a poster divided into 4 quadrants, labeled Mad, Sad, Glad and Afraid.  All emotions can fit into one of those emotions, or a combination of them.  I had everyone place their Post-it notes on the board wherever they thought they best fit.
We had no surprise when we saw that the fullest quadrant was Mad, followed closely by Sad and Afraid.  There were only 2 Post-its in the Glad quadrant.  Some people were surprised there were any in that quadrant at all.  Who would be glad to have chronic pain or illness?  What positive feelings could possibly come from being sick and hurting all the time?  One of the Glad words was mine, the other was from someone who I know from our local Sjogren's Syndrome Support Group which I co-lead.  Her word was 'surprised'.  She said she is surprised when she has times when she feels good and can do what she wants to do. I like her use of that word.  She could have used 'pleased', and that would have covered the basic feeling, but 'surprised' has another connotation to it. 'Surprised' includes an aspect of  an unexpected gift. When you are used to not feeling well, having a day when you do feel well is truly a most pleasant unexpected gift.
The Glad word that I contributed was 'grateful'.  That word has several meanings for me here.  I am grateful that at this point, my issues have settled down into manageability, and my pain is not constant.  Various parts hurt when I do various things, but I do have times during the day when I can pretend that nothing is wrong with my body.  The other way I am grateful is for how it has changed my life.  If I did not have pain and illness, I would likely be working full time, and not only would I not have time to write this blog and run my support group, but I likely would not have thought of doing these things.  I have a nice mix of things I do with my time, and my illness has allowed me the opportunity to do them.
As I write this, some other positive thoughts come to mind.  Because of my illness and pain, I have learned patience. I have learned mindfulness. I have had more time to devote to my art and to writing.   I have met many people I would not have met.  I have done some traveling (to the national Sjogren's Syndrome Foundation patient conferences). I have time to nap during the day if I need to, which I just did.  You probably didn't even notice I was missing for awhile between the last paragraph and this one.

Be the CEO of Your Life

The first session of my Chronic Illness/Chronic Pain Support Group was on 'Being the CEO of Your Life”. Living with a chronic illness or chronic pain, it is easy to feel like your life is out of your control. Here is a version of what we covered in that first meeting, with some ways to increase feelings of control in your life.

1. Get out of the ‘patient’ mode: The 'patient' mode of passively having others do things to you and for you is fine for acute illness, but not for chronic illness. This is your life. It is up to you to call the shots. Even if you need people to help you, you can have control of who, what, when, how etc.
2. Grieve for the life you expected: We usually think of grief as what we go through when a person dies. Those feelings you feel at no longer being able to do what you used to do so easily is also grief. Don't deny those feelings. Let yourself work through them so you can move on.
3. Accept your illness and/or pain as your reality and your current ‘normal: Throughout our lives we move from one role to another, from child to college student or employee, to spouse, etc. Each one is 'normal' for us at the time. Wishing you could be a child again won't make it happen. Wishing you could go back to the way life was before the pain or illness started won't make that happen, either. Accepting that this is your reality allows you to work with your issues, rather than fight against them.
4. Redefine how you describe yourself: If you describe yourself as fatigued, worthless, disabled, etc., that is who you will be. You are denying the more positive aspects of yourself. If you define yourself as a construction worker, but you can no longer work, you are living in the past, and ignoring who you are now. Look at your life. Find positives that define you now: I am creative, I am calm, I am well educated, I am persistent.
5. Revise your priorities, set relevant goals: Old habits die hard. Sometimes we continue doing things the same old way, even though circumstances have changed, and those old habits no longer fit our current life. Take time to think about your routines. Are you using your energy in ways that support your needs and wants?
6. Educate yourself about your illness and pain: The better you understand how your body functions (and malfunctions) the better you can care for your needs. This education is on 2 fronts- learning about the illness itself, as well as becoming attuned to your own body and how it reacts to things. Get involved with a support group, either in person or on line.
7. Be an active participant in your care: Partner with your doctor(s) in your treatment. Ask questions when you don't understand; make decisions that are best for you, not what the doctor thinks is best, or what your neighbor says she did. You may need to educate your doctors about your illness. (It is unreasonable to think that a primary care physician would be able to keep track of every detail of every illness out there, just in case someone might come in with it.)
8. Be assertive- say ‘no’, and ask for help: This is your life and your body. No one knows it better than you, and no one has a greater interest in keeping it functioning than you. As the CEO, it is up to you to set priorities and delegate tasks. Being assertive means being 'direct with respect'. Be clear about what you want/need. People will be more willing to comply with your wishes if you are polite than if you are demanding.
9. Challenge negative thoughts: 'I am so stupid'- No, you aren't, you just made a mistake. 'I am useless'- No, you aren't, there are still plenty of things you can do. 'I'm just an old cripple”- No, you are not.  You are not your pain/illness/disability. That is just a part of you. Focus on the other aspects of your self and your life.

Cognitive Therapy for Chronic Pain

I have mentioned the blog and website How to Cope with Pain several times in this blog.  From the title, you can guess what the subject is.  Recently, the author of that site had a contest.  It was very simple, but quite clever, too.  He asked people to submit previously unpublished writings on any aspect of pain or living/coping with it.  All submissions would be published on his blog over the next couple of months. (That is the clever part- he has a a variety of things to post that he did not have to write himself.)  The contest was a random drawing of 9 submissions from all received, and those 9 authors would get to choose a prize from a list of books. One prize was not a book, it was a set of 6 squishy, silly faces representing levels of pain.  One of my 2 submissions was chosen in the 4th slot.  I reviewed the prizes, looking them up on Amazon to find out about each book, then sent a list of my top 4 choices.
I got my first choice.  It is a book called Cognitive Therapy for Chronic Pain, A Step-By-Step Guide, by Beverly E. Thorn.  This book is designed for therapists running groups, which is likely why no one ahead of me in the queue chose it.  Individual people with pain might not get as much benefit from this book as I might.  I have looked at the book briefly, and it is somewhat daunting in its wordiness and professionalism.  It is not the kind of book that I can just sit down and read cover to cover over a weekend.  Cognitive Therapy seeks to help the patient cope better by identifying and changing dysfunctional thinking, behavior, and emotional responses. This involves helping patients develop skills for modifying beliefs, identifying distorted thinking, relating to others in different ways, and changing behaviors.  This brings to mind the old joke:  How many therapists does it take to change a light bulb?  Only one, but the light bulb has to want to change.  Cognitive Therapy takes commitment and effort, but it works. 
This book is set up with 10 modules for teaching Cognitive Therapy to groups of people with chronic pain. The modules appear to be thoroughly thought out, including a list of supplies needed for each one, instructions, handouts, discussion questions, etc.  I am excited about adding this book to my arsenal (I mean, library).  I will have to spend more time with it to decide how I want to use it,  I can use aspects of it in my Chronic Illness/Chronic Pain Support Group.  Another possibility is to start a separate group that is 10 sessions long, specifically on using Cognitive Therapy for Chronic Pain, and use the 10 modules for teaching the group.   (That would be down the line a bit, I want to get this first group running smoothly first.)  I do admit, though, that it would have been alot easier and more fun if I had gotten the 6 squishy pain faces.  I could have just put them out on the table at each group session, and people could pick which one they felt like that day.

The Mindfulness Solution to Pain

Several times I have written about mindfulness and how it can be used to help reduce pain. Mindfulness involves a level of awareness of ones surroundings that is uncommon in our busy lives. While driving, we plan what we will say at the meeting when we get to work. At work, we think about what our child said this morning and what we will make for dinner tonight. We live our lives in the past and future, inattentive to what is occurring in the present moment.


Mindfulness involves noticing the feelings, sensations, sounds, etc. surrounding us in the present moment, and accepting them as is, without judgment. The dog barking next door is neither bad nor good, it just is. The same goes for the pain you are experiencing, though it may take some practice to be able to accept this. Part of learning to be mindful is learning to meditate, where you focus on one area, such as your breathing. I have tried to meditate off and on, but I have never gotten into a habit of meditating regularly, which is the only way to gain real benefits from it.

I found a book at the library that I hope will be helpful in this area. It is The Mindfulness Solution to Pain, by Dr. Jackie Gardner-Nix. I have read the first three chapters. They talk about understanding pain, what mindfulness is, and basic meditation. One thing that caught my attention was the similarities between the words medication and meditation. Medication has a ‘c’, for chemicals, and meditation has a ‘t’ for thought. Both have their place in controlling pain.

This book suggests stopping reading after the third chapter, and practicing daily meditation for a couple of weeks before moving on. Since this is a library book, I am not going to do that, but I am going to try to start meditating daily. I did it for 10 minutes today.  That's a good start.

Silk Painting, and a New Support Group

If you are familiar with my blog, you probably noticed that I have recently changed the look of this site.  I decided it was time for something new.  I also have become more comfortable with Blogger, and wanted to experiment with different options with colors, background, etc.  I like the background.  It looks like one of the silk scarves I make.
Here's how it is done:  I wet the silk, and stretch it out on a frame so it is fairly taut, and won't touch the table below it.  Then I swirl on silk paint, my favorite combination is blues, greens, turquoises, and purples, with a little pink for accent.  Getting the silk wet beforehand allows the colors to flow into each other, creating infinite shades.  The bubble effect is created by scattering salt on the silk while it is still wet.  The salt attracts the water, making lighter areas where the salt crystals lay, and leaving paint in the surrounding areas more concentrated and darker.  This is an art that I like to do when I feel adventurous.  Because of the way the water, paint and salt interact, there is limited control in how the finished piece will turn out.  You can get similar effects using water colors on paper, by following the same process.
This is generally not a good art to do on the days when I feel like everything is out of control, and I need something I can control,   An interesting observation- On days when my pain is high, it can be good project, because I feel like I need to just let go and let things be.  The results are always pleasing, and often surprising.  Doing silk painting on a high pain day gives me something that I can be pleased with, despite the pain.
There is another change in my blog site that is relevant only to people living in the Cuyahoga Falls/Akron, Ohio area.  I have added a third page to my site, under the tab 'Support Group', located below the header and above the butterfly panel.  This page has information on the new Chronic Pain/Chronic Illness support group I am starting.  Part of each session will be creative, either art or craft, no experience is necessary.  The other part of the session will be educational/discussion on different topics related to living with and coping well with chronic pain and/or chronic illness.  We will meet at my gallery the 1st and 3rd Wednesdays of the month, the first session will be January 19, 2011.  Go to the Support Group tab above for more info and to sign up.
I will tell you more about this support group on a later date.
 

Adaptation 101

I am an occupational therapist (OT). I am trained to look for ways that an activity can be adapted for differing abilities.  That really comes in handy when my body parts are complaining or my fatigue level is high. I have had alot of practice over the past year, trying to figure out how to take care of business with tennis elbow in my right arm flaring up at the least bit of exertion.
I have been going to a physical therapist for my arm, and have been having her give me exercises for my knee pain as well.  Several of the exercises she gave me to do I have had to adapt.  One of them is a stretch for the quadriceps muscles, he muscles in the front of the thighs.  The traditional way of doing the stretch is to stand next to something you can hold on to, lift one foot behind you, and grab onto your ankle with the hand on the same side of your body.  Point your knee down toward the ground, with your foot behind your butt, sole of the foot toward the ceiling.   You can increase the stretch by pushing your hip forward, and/or your foot back away from your butt.  (If you can't grab your ankle, you can grab your pant leg.)  I can't do this exercise the 'normal' way with my right leg, because it puts strain on my right arm.
I came up with two adaptations. The first one, I can do in my recliner chair.  I sit with my weight mostly on one hip, and bring the other foot up next to/behind me.  I then twist so that the foot is behind me, my knee is pointed away from my head, and push my hip forward and foot backward to get a good stretch.  As you might expect, I feel a bit like a pretzel doing this, and my other body parts ask me what it is I am trying to do.
The second adaptation is more creative, and also safer and more comfortable.  I discovered that our washer and dryer are just the right height to put my foot up on to do this stretch.  I simply turn my back to the washer, lift my foot up behind me, and balance the top of my foot on top of the washer, sole of my foot to the ceiling (my hand helps keep it in position, without undue strain on my right arm).  I do make sure I am wearing cushy shoes to do this, so the top of my foot doesn't hurt.
Occupational therapists are trained to adapt things, but you don't have to be an OT to do it.  I know that most, if not all, of my readers have chronic illness or chronic pain issues, that is what drew you to my blog in the first place.  Business as usual is not usual for us.  There are often things that we can't do, or can't do the 'normal' way because of the pain, fatigue, or whatever other symptoms might have cropped up that day.  Knowing how to make adaptations takes creativity and practice, but can be readily learned.
The formula for making an adaptation is as follows:
1.  Know what it is you are trying to accomplish.  In the case of an exercise like the one above, what muscle are you trying to stretch, and in what direction.
2.  What is keeping you from doing it the usual way?  In this case, it was my arm pain, so I needed to find a way to position my leg to do this stretch, without using my arm to do it.
3.  What are some options for accomplishing your goal, bypassing the problem area?  I outlined two options for doing this exercise above, each of which is feasible, one of which is better than the other.
4.  Decide which option seems the best, and try it.   If it doesn't work, try another option.
Not everything is adaptable for every situation, but you may be surprised and pleased with how many things you can do, just by adapting some of the factors to fit your needs.

I Just Wanna Be Normal

Who here has not wished to be normal (again)?  My patients often have a goal to have their life get back to normal.  I ask them what 'normal' is, and they usually say "You know, like it was before."  Sometimes life can get back to what it was 'before', but usually not.  I went to the funeral of a friend yesterday.  He and his wife met in their teens, and had been married over 40 years.  Yesterday, his wife was wishing desperately that life would go back to 'normal', you know, 'before'.
Life is a series of plateaus, separated by transitions.  At each transition a new 'normal' emerges, and we either accept and adjust to it or we don't, but we can never go back to a previous 'normal'.  Some transitions are planned, like weddings and graduations, some are unplanned, like funerals.  Some are good, like babies and new jobs, some are not so good, like illness.  Some are major and some are minor, some are sudden and some are gradual.
So what is 'normal'?  According to dictionary.com, there are 2 definitions that fit this discussion:

1. Conforming with, adhering to, or constituting a norm,standard, pattern, level, or type; typical.
2.  Functioning or occurring in a natural way; lacking observable abnormalities or deficiencies.
   The first definition fits what I described as the plateaus between the transitions: where life is fairly consistent for a time.  The second definition I find very intriguing.  On the one hand, those of us living with chronic illness or pain would not be considered normal, because we have 'deficiencies'.  On the other hand, since most of us have invisible illnesses, we are normal, because we 'lack observable abnormalities'.  (At least, our 'abnormalities' are not observable to other people.)
   I remember before my husband and I got married (we had our 14th anniversary two weeks ago) an incident that had me wondering what normal was.  I sat on his lap sometimes, and he never seemed to mind.  He sat on my lap sometimes, and I always got pain in my thighs much sharper and stronger than I would expect.  This was 9 years before being diagnosed with Sjogren's syndrome and Fibromyalgia, and though I had had other pain issues before, I had not yet figured out any pattern or connections.  I wondered if this pain was normal, and I was just being a wimp.  I asked my husband, and it turns out, he didn't have the pain in his thighs like I had.  Hmmm...
   This pain, though not 'normal' as in typical for human beings, was 'normal' as in typical for my body.  There is no 'normal' that we can aspire to.  Each of us has our own 'normal', and it is subject to change as we age.  If we fight that 'normal', we stay stuck in a past that no longer fits.  We busy ourselves with waiting for something that will never come.  We miss out on the delights of everyday living, we focus on the struggles and not the triumphs.   I could either accept and adjust to having pain, or I could cry, complain, rant about the unfairness, and refuse to accept that this was my reality.  I did a combination.  I cried, and mourned the loss of ease with which my body used to function.  Sometimes I complain, though briefly.   
    I would rather not have this pain, but in order to live my life, I have had to accept that having pain is my 'normal'.  I am less tense when I do not fight against the pain,which, ironically, eases the pain some.  I adjust by turning down the volume of the pain with medication, exercise, a fine balance of pampering and pushing myself, and many other coping techniques, some of which I have written about in this blog, others I have not.  By accepting that some level of pain is my 'normal', I can live in the here and now, and make the best of each day. 

The Alexander Technique

I heard about the Alexander Technique several years ago.  To really do it right, you have to go to an Alexander trained teacher, who will work with you one on one to teach you how to move your body correctly.  The little bit that I know about it and have applied has helped me, though I usually don't remember to apply it. This will be a brief introduction, with links to sites that will tell you more.
The Alexander Technique was devised by an Australian actor named F. M. Alexander in the late 19th century.  He kept losing his voice on stage, and discovered it was because of his posture.  Many actors, musicians singers and sports players have been through the training over the years.  It helps them to use their bodies more efficiently, and to perform better.
If you watch how children move, you will see that their heads are directly above their necks, not thrust forward, as many adults are; they crouch by bending their knees and hips, not their waists, as adults tend to do.  Their movements are fluid and natural, with muscles and joints loose and relaxed.  As we grow up, we tend to hunch over our book or our computer, muscles tensed, then wonder why we hurt.  The way we move is automatic,  habits.developed over the years.  This video illustrates how our bodies move, versus how they should move.
The Alexander Technique reteaches the body to move as we did as children.  I takes practice, and I can see the benefits of having a trained teacher to work with.  The basic concept is to release the tension in your muscles, and allow them to lengthen.  The alignment of the head, neck and back is key.  Imagine how women align their bodies in order to carry large loads on their heads.  If they had their heads forward, as many Americans tend to do, their necks would hurt in almost immediately..
Stand up as you normally do.  When someone tells you to stand up straight, the tendency is to push the chest forward, and the head back.  That can be just as tiring as the normal slouched posture.  Instead, try this:  'Let the neck be free;' 'Let the head go forwards and up'; 'Allow the back to lengthen and widen.'  Alexander called these his 'conscious projections', and had his students memorize and practice these words until they were automatic.
The head, neck and back alignment is the main thing that I have learned and applied.  I have had months of intense pain around my right scapula (shoulder blade). One thing that helped, and I think ultimately got rid of this pain was readjusting my posture.  While sitting or standing, I would take a good breath in, and relax my muscles as I breathed out.  I would imagine a string from the back/top of my head gently pulling upward, straightening and lengthening my spine. Breathing in again, I would envision the air spreading throughout my neck and upper back, leaving everything loose and relaxed.  Here is a good explanation of how the Alexander Technique can help with chronic pain.
The Alexander Technique has very specific instructions for standing, sitting, laying down, getting up, and almost any activity you might want to do. The ideal would be to have a trained instructor teach you, but that can be expensive.    Here are some books and a DVD that can help you learn on your own.

How To Explain Your Illness To Others, Part 2

For many of us living with chronic illness, the two biggest problems are fatigue and pain.  In my most recent post, I wrote about explaining fatigue to others.  In this post, I want to share some thoughts on explaining chronic pain to others.  Everyone experiences pain differently.  For most people, pain is a temporary condition, with a specific cause, and options for treatment.  They take aspirin, rub on some Ben Gay, and within 20 minutes, or maybe a few days, the pain is gone.  They don't understand why our pain doesn't go away.  They may thing we are exaggerating, or just like to complain.  
Even for each of us with chronic pain, our experience is different.  Some people have constant, unrelenting pain, others have intermittent pain, or pain only when they do certain actions.  Some have pain that is burning, or shooting, or stabbing, or aching.  It can be sharp or dull, or throbbing.  Most people can understand these descriptions of pain.  What they can't understand is what it is like to have pain and not be able to get rid of it, no matter what we do, to live with it 24/7.
Here is a great description of living with pain.  I found this on a blog called the How to Cope With Pain Blog.  He has a Blog Carnival every month, where he lists a number of blogs he as found that he thinks are worth reading. (They usually are).  One of the blogs he listed this month was 30 things about my invisible illness you may not know.  It is long, but worth reading.  One section of it describes living with chronic pain.  You can feel the frustration in her words of people not understanding.  I couldn't find the name of the person who wrote this, but her blog is called Kids By Hand.

I think people would also be surprised to know that pain doesn’t have to be an excruciating pain to have a profound effect on your life. If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger. But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe. “You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

When I see someone struggling with a pebble, I want to hug them and say “You’re not alone; I have a pebble, too.”

It won’t make their pain any less. But it will make it less frightening. Less lonely. Hopefully they will begin to see all the things they can do in spite of their pain, rather than all the things they have had to give up against their will. Hopefully they will see that, in spite of the pebble, they can still be the kind of person they want to be. That, even with a pebble, life is still good.

Just thinking about always having a pebble in the shoe hurts.  I never thought about it that way, but it makes sense.  Every time I use my right arm, it hurts, every time I step on my left foot, it hurts.  I guess my pain is like constantly having a pebble in my shoe.  I have times when I don't hurt (like right now, sitting in my lounge chair with my feet up), but I hurt whenever I move or go to do anything.
I would like to hear from my readers:  How do you describe your fatigue, pain, or other symptoms to others?