The Campaign to End Chronic Pain in Women

When I first read the title 'The Campaign to End Chronic Pain in Women', I chuckled.  Not because pain is funny- it certainly isn't, but because of the image that came to my mind.  I imagined a rally of people carrying signs that read  'END CHRONIC PAIN' sort of akin to a rally of people carrying signs that read 'END THE WAR'. 

The campaign is not literally to end chronic pain, that is, unfortunately, not possible with current medical knowledge.  That, right there, is one of the main points of this campaign.  To get more funding to study chronic pain issues, so that in the future, it will be possible to control and even end it. 

According to The Campaign to End Chronic Pain in Women website, "As many as 50 million American women live with one or more neglected chronic pain conditions. Our goal is to put an end to the neglect, dismissal and discrimination faced by women suffering from chronic pain, thereby improving their quality of life and medical care."  They aim to raise awareness among policy makers, health care professionals and the public of the lack of scientific research as well as the poor quality of education health care providers receive on these chronic pain conditions. It is hard enough living with chronic pain without having to fight for treatment. 

The website goes on to state "Chronic pain is estimated to affect 25 percent of Americans and account for more than 20 percent of all physician office visits. Unfortunately, women bear the brunt of chronic pain conditions. The six conditions targeted by the Campaign to End Chronic Pain in Women – chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular disorders and vulvodynia – either solely affect women, or affect women at least four times more often than men."  That's alot of people affected, and the cost in lost work time, lost wages, lost quality of life, etc. is astronomical. 

The campaign asks people to contact their representative in Congress, and ask them to act on the policy recommendations.  They even have a listing of congressmen/women in case you don't know yours, and a sample letter template to use, so you don't have to figure it out yourself.  I will give you one suggestion I got from a senator a few years ago.  If they receive form letters, they just count them.  If you personalize your letter, with info about how it affects you, for example, they will read it more carefully and often send a personal response.
I know it is hard to take action like this when you are in pain, or have fatigue.  It is to our benefit that all of us get involved by making a phone call, or sending a letter. The website also includes a list of resources to help people with chronic pain cope.

Drawing Distracts, Helps People Feel Better

We have spent the past several days at the 22nd Annual Conference of The Association for Psychological Science.  My husband is a psychologist, I am a psychiatric occupational therapist, and tomorrow morning our oldest son, who is a doctoral student at Boston U. will be presenting a poster session.  (There will be a room full of people presenting their research, each with a section of a wall on which to mount their research info. People walk around and stop to talk to any of the presenters they want to to get more info on the topics that interest them.)

During a previous poster session two days ago, I talked to a young lady about a poster that is relevant to this blog.  The research topic was 'Drawing Improves Short-Term Mood Not by Venting but by Distraction'.  The researchers were Jennifer E. Drake, Katelyn Coleman and Ellen Winner, all of Boston College.  I feel bad that I don't remember which one of them I talked to, I hope she will forgive me, but she was very informative. 

What they did was have the subjects watch a distressing film, then divided the subjects into 2 groups.  One group was told to write, the other group was told to draw.  They could either focus on the topic of the film in order to vent/process it, or on any other topic in order to distract themselves.  They were given a mood assessment before the film, after the film, and again after the writing or drawing intervention. 

What they found was that the people who drew on other topics to distract themselves had significantly higher mood afterward than those who drew on the topic, or either of the writing groups.  In fact, the ones who wrote on the topic of the film had the lowest mood afterward.  Keep in mind that they wrote or drew for only 10 minutes, so it was not the same as most journaling, which goes on as long as you need, or is an ongoing activity.  It does, however, show that if you feel like you need to do something to feel better, a good option is to pull out some paper and crayons/pencils/markers and draw on a topic you like.  Every person is different, so experiment with different media, and pay attention to what helps you feel better, what helps you get away from your issues for awhile. 

Pets are Therapeutic

I love cats.  I have had cats most of my life, until I got married.  I sometimes joke that when I got married, it wasn't fair that I had to give my only daughter away, while my husband got to keep both his sons.  The difference was that my daughter was feline, his sons are humanoid.  I love my stepsons, but they don't sit in my lap and purr when I pet them.

An article in Answers.com states: 'Studies have shown that physical contact with a pet can lower high blood pressure, and improve survival rates for heart attack victims. There is also evidence that petting an animal can cause endorphins to be released. Endorphins are chemicals in the body that suppress the pain response. These are benefits that can be enjoyed from pet ownership, as well as from visiting therapeutic animals.'  People who live alone can feel lonely and isolated, especially if they are ill.  Having a pet not only gives them company, but also having someone to take care of and be responsible for can give them a reason to live.

Even without the support of these studies, I know that I cheer up at the mere sighting of a cat, and I will go out of my way for the chance to pet one.  We are visiting my oldest stepson, whose roommate has a cat.  This cat likes to be played with on her own terms, and will turn and bite when she has had enough or if you touch her wrong.  For the most part, we get along well, and she comes running to me to be petted as much as I run to her to pet her. 

When  I pet a cat, I feel happy, calmer, and if they are purring, I feel like I am purring, too.  I know there are people who prefer dogs to cats, I don't want to get into a discussion of which is better.  Having a dog or a cat, or another animal can provide similar benefits, so chose whichever you prefer. The bottom line is, having a furry companion can help you feel better and live healthier.  If you don't have one or want one of your own, borrow someone else's when you can.

My Beautiful Broken Shell- I am Beautiful in my Brokenness

I came across a wonderful little book today, 'My Beautiful Broken Shell: Words of Hope to Refresh the Soul', by Carol Hamblet Adams.  The illustrations are watercolor seashore paintings by D. Morgan.  Both the writing and the illustrations are gentle and inspirational.  In searching for shells, she picks up a broken one, and rather than rejecting it, she sees her life in it.

We are all broken in some way, but that doesn't make us any less beautiful and worthwhile.  Having the brokenness can help us to learn and to grow.  One of my favorite pages is this: 'Thank You, Lord, for all that I learn from my brokenness...for the courage it takes to live with my pain...and for the strength it takes to remain on the shore.' 

There are a number of pages where the author thanks the Lord for things in her life. As a Jew, I am uncomfortable with books that address Jesus, even though the message may be one that I like. She is non-specific about the Lord (ie, she does not specify Jesus),  so I was comfortable with the writing.

When I looked on Amazon to find the link to this book, I found 6 with the title 'My Beautiful Broken Shell', all by the same author, with different subtitles. You might want to check out the others, as well.  This is a simple, basic concept, but so easy to forget.   'Broken shells inspire others and demonstrate the will to go on in a way that no perfect shell could ever do.'

Live The Life You Love, Love the Life You Live

In Cape Ann, MA yesterday, we wandered around the Rocky Neck Artists ' Colony.  The second place we wandered in to was Brenda Malloy's shop, Imagine.  She sells colorful paintings that she does, as well as clothing that she buys on annual shopping trips to Asia. On her business card, and on the wall in her bathroom which serves as her dressing room is a motto that she lives by, and that I aspire to live by:  'Live The Life You Love, Love the Life You Live'.  Living in an artists' colony half of the year, travelling the other half is a life many people wold see as a dream life (though I am sure it has its ups and downs, and difficult parts as well). 

Do you live the life you love?  Are you doing what you dreamed of doing as a kid?  Are you doing what makes you happy?  Most of us would answer 'No' to those questions.  We live a life where we work to pay the bills, we take care of our responsibilities, with little time left for what we love.  Or, as the case often is for people with chronic pain/illness, much of our time/energy/money goes to managing our illness.

What can you do to move closer to the life you want?  What changes can you make in your routines to have time/energy to do what you love to do?  Look at how you spend your time/energy/money, and ask yourself, "Is this supporting the life I want, or is it detracting from it?"  You have to keep a little bit of realism in your answers, to make sure you are not making decisions that could harm you, such as deciding to stop taking a medication because you wish you could get along without it.  Wishes won't become reality just because we wish them.  Work with your doctor to decrease medications, or streamline them, if that would move you closer to your ideal life. Stop wasting time and energy on things you are 'supposed' to do, and use that time and energy on what makes you healthier and happier.

The other side of this motto, is loving the life you live.  People with chronic pain/illness don't have ideal lives.  We didn't ask for these maladies, but we are stuck with them.  Rather than focussing on what is wrong, focus on what is right in your life.  Find the aspects of your life that you do love, and emphasize them.  No ones' life is perfect.

Keep the motto  'Live The Life You Love, Love the Life You Live' in the back of your mind for awhile, and see what changes come about.  Your life will be easier and you will be happier.

A Good Night's Sleep on a Leaky Air Mattress

Last night we slept on the floor of my step-son's apartment near Boston.  To be precise, we slept on an air mattress.  They didn't beleive me at first when I said it was losing air, but it soon was leaking so fast that it was obvious to everyone.   We pumped up the mattress, and within 5 minutes, we hit the floor.  We slept on it anyway, for lack of other options.

My body hurts when I sleep at home on our Sleep Number bed with a Memory Foam topper, so I was not thrilled with the sleeping arangement last night.  But, as I have said before, there are always choices.  No, we didn't have a choice about sleeping on the floor when the mattress went flat each time we pumped it up, but we did have choices about how we dealt with it.  I could have lain there, and worried about not getting any sleep, and about how much pain I would be in the next day.  I could have cursed my circumstances, and wished that I was someplace else, that the mattress didn't leak, or that my body didn't hurt.

None of those choices would have helped me any, and would have made my circumstances worse.  Worrying about not getting sleep would have kept me awake, Focussing on my pain or on my bad luck would have made me feel sorry for myself, and lead to ruminating.  Again, the result would be no sleep.  That would have brought about a self-fulfilling prophesy, of expecting no sleep and then getting no sleep because of my behaviors. 

Instead, I chose to accept my situation and make the best of it.  I  looked at it as an adventure, like we were camping out (or in, as the case may be).  We are on vacation.  We are visiting my step-son.  This is fun. I arranged myself as best I could, then focussed on calming my breathing.  I focussed on my husband snuggled against me, rather than on the hard floor under me.  I chose my reality by what I focussed on, and by what I chose not to focus on.   The hard floor was still there, but it wasn't relevant. 

As a result, I slept fine.  Maybe not as well as in my own bed at home, but well enough that my fatigue didn't flare up, and my pain level is no higher than usual.  We went to Cape Ann today and played tourist, and on the way back to the apartment, we stopped at Wal-mart and bought a new air mattress.

Fibromyalgia: What a Pain

One of my earliest posts was about Sjogren's Syndrome, but I never wrote about Fibromyalgia, my other chronic illness.  My thinking was that few people have heard of Sjogren's Syndrome, and more people have heard of Fibromyalgia (or Fibro, as it is familiarly called by some people).  There is alot of misconception out there about Fibro, so I will explain some of its basics today.

'Fibro-my-algia' literally means 'fibrous tissue-muscle-pain'.  That is the main symptom as well: widespread muscle pain throughout the body.  Other symptoms include an increased painful response to pressure, fatigue, brain fog and sleep disturbance.  A common way of diagnosing Fibro is to press on 18 specific 'tender points' on the body, if 11 out of the 18 are overly painful, the diagnosis is positive.  Others say that you don't need 11 positive points for a diagnosis, that fewer painful points and a history consistent with Fibro is enough for a diagnosis.  I have never been tested for the 18 points, but was diagnosed based on the my history, and that 'if you touch me anywhere, I hurt'. 

For some people, the fatigue can be as much or more debilitating than the pain.  The fatigue of fibro can be unrelenting exhaustion.  Some people describe it as feeling like they always have the flu, with the muscle aches, weakness and wiped out feeling.  It often coincides with mood disturbances, anxiety, or depression. People with Fibro often have sleep that is unrefreshing or light, so rest does not help the fatigue.  A friend of mine describes her fatigue as feeling like someone cut the tips off of her fingers and all the blood drained out of her.  I describe mine as my body parts are disconnected and full of lead, and my brain is full of marshmallow cream. 

The brain full of marshmallow cream leads me to the next symptom, brain fog, sometimes referred to as 'fibrofog'.  This is a difficulty in concentration, short and long term memory disruption, and difficulty in decision making.   My husband can tell when I am foggy when I stare at him blankly when he asks me to make even a simple decision. 

Some websites that have helpful info on Fibro are the National Fibromyalgia Association, WebMD and wikipedia.  A couple of good books are; Your Personal Guide to Living Well with Fibromyalgia, published by the Arthritis Foundation and Living Well with Chronic Fatigue Syndrome and Fibromyalgia, by Mary J. Shomon.  Along the right side of my blog you can find a widget with posts by Karen Lee Richards, who was diagnosed with Fibro in 1996, and is the co-founder of the National Fibromyalgia Association. 

One of the problems facing people with Fibro is that many people, including physicians, still don't believe that it really exists as a physical illness.  They think it is all in the head of the patient, because there are no lab tests that diagnose it.  This is changing, as more research is done, and possible links are being found between Fibro and central nervous system dysfunction, neuroendocrine dysfunction, and cerebrospinal fluid abnormalities, among other abnormalities  So far, there is nothing conclusive, but research is promising  Read the hypotheses posted on wikipedia for more on this.

Just For Today, I Can Cope With My Life

Just for Today is a prayer written by Kenneth L. Holmes and used by Narcotics Anonymous.  The basic premise is that there are things in life that are hard to endure.  If I think about doing it day after day after day, I will crumble:  I can't do it, I am not strong enough.  But If I focus on just getting through today, I can manage it.  If I have to go through it again tomorrow, so be it, but I don't have to think about that now. I only have to think about getting through today.

This prayer came to mind this morning because I am 'fatiguey'.  I didn't sleep well last night for unknown reasons, so today I feel foggy and disconnected.  My body feels a little wobbly, and I have slight nausea.  Basically, my whole system is just a little 'off'.  I used to feel this way constantly.  Now I only get it later in the day when I have been especially busy- more so from being brain busy, than from being body busy, or on days when I didn't sleep well. 
I hate this feeling.  It is hard to function feeling like this. I know in all likelihood I will feel better tomorrow, but if not, tomorrow will take care of itself.  Just for today I will manage, I will be gentle with myself because I know it is not my fault. Just for today, I will take care of all the things I planned for today, because I know, from past experience, that I can do what I need to do despite this feeling.

I recommend adding 'Just for Today' to your vocabulary.  Living with chronic illness or chronic pain can be trying not only physically, but emotionally as well.  The realization that it is not going away can be scary and devastating. By focusing on getting through 'one day at a time'  (this phrase is from Alcoholics Anonymous).  life is more manageable. I work on 2 Psych wards at a hospital. My patients are usually in crisis when they come in.  I tell them that sometimes even 'one day at a time' may seem overwhelming, and if all you can handle is one hour at a time, or even one minute at a time, that's okay.  Focus on getting through right now, making this moment of your life the best it can be. Tomorrow will get here when it gets here.  If you took care of today, you will be ready for tomorrow.  

Invisible Illness

In my last post I wrote about hunting for wildflowers. I mentioned a book I use that is specifically about wildflowers of Ohio, where I live. I like it because I don’t have to weed through (pun intended) lots of flowers that don’t grow in my area to find ones that do. I expect that pretty much every state or area has a similar book.

While I was out hunting wildflowers, I saw something I have never seen before. There was a butterfly crawling along on the ground. It was mostly on stone, and when it came to the occasional plant, it crawled up it, then jumped back down to the ground. It was a beautiful swallowtail butterfly, mostly yellow with black edging and stripes, and a row of iridescent blue spots along the sides. The wings looked intact, and as far as I could tell, there was nothing wrong with anything else about the butterfly. It just seemed to be unable to fly.

Just like the butterfly, when people look at me, they don’t see anything wrong with me. My disability is invisible.  In some ways that is good, because I don’t want to be treated any differently, as people tend to do sometimes. On the other hand, it makes it more difficult for others to understand when I am too fatigued to participate in an activity, or if my pain is such that I have to quit early.

Many chronic illnesses fall into this category of invisibility. Both Sjogren’s Syndrome and Fibromyalgia do, as well as Lupus and other autoimmune diseases. There is a wonderful website I have been following for a couple of years now titled But You Don’t Look Sick. It is written by a young woman with Lupus, with assistance from her friends and family. Christine Miserandero has won many awards for that site. A week in September has been designated 'National Invisible Chronic Illness Awareness Week'.  This website has alot of good info about living with invisible chronic illness.

So how do you respond when someone says “But you don’t look sick” or some other variant of  “You look so good, I don’t believe you are really sick”? How about “Thank you”?  It most often is meant as a complement.  If not, take it as one anyway.  You deserve it.

For a few years now, I have talked openly about my illness, trying to educate people. I don’t emphasize it, but if it fits the discussion, I jump in. I talk matter-of-factly, not looking for pity or for attention, and hopefully not getting the former, and getting just enough of the latter that they go home with better understanding of me and of my illnesses. I base the extent of my 'instruction' on the level of their interest.  Staying matter-of-fact in your tone will help others be at ease, and they will be more willing to listen. 

So what happened to that butterfly?  I carefully picked it up and put it on a plant in an area with more flowers.  An hour later, I could not find it.  My hope is that it recovered, and flew away.

Hunting for Wildflowers

We have a cabin we go to sometimes. When we are there, the rest of the world goes away, and we can relax.  More on this another day.  What I wanted to write about today is flowers.  One of my favorite things to do at our cabin is to hunt for wildflowers that have opened since our last visit, and mark them in my wildflower books.  I have 3 books of wildflower identification, my favorite is Wildflowers of Ohio, by Robert l. Henn.  It is nicely organised, with good pictures.  I use the other 2 books if a flower I find is not in this book.  Sometimes I find a flower that is not in any of my books, then I write about it in the margins of my favorite book near the flower it most closely resembles. 

This is the best time of year for hunting flowers.  There are so many popping open, the array changes from one day to the next.  Hunting flowers is one of those activities that gets me out of myself, focussing first on the hunt, then on the study and identification of each new flower I find.  I am noticing that I am remembering more of them each year (I started doing this in 2006). 

Other benefits of flower hunting, besides giving me something to focus on, is the exercise, fresh air and sunshine.  If you are sun sensitive, as I know many people with with autoimmune diseases are, especially with some of the meds, you can wear sunblock clothing, or go out in the early morning or in the evening.  I highly recommend flower hunting.  There is something about flowers that refreshes the spirit, and holds promise for the future.  Maybe it is the bit of color they splash on the landscape.  Maybe it is the hunt itself, where I know that each time I go out between March and October, I will find something new.

Art Journals for Coping and Healing

Yesterday I wrote about the attitude of gratitude and suggested keeping a gratitude journal.  Another kind of journal that is fun and can be beneficial is an art journal.  One of the things that needs to be emphasised here is that you don't have to be an artist to enjoy and benefit from art journalling. In fact, sometimes being an artist can be a drawback, because you are more likely to critique your work as not being 'how it should be'.

There are a couple of different types of art journals, with very different purposes. One is a journal in which you use art (drawing, painting, collage, etc.) to express and explore your inner feelings, much like art therapy. The pages can be done spontaneously, just allowing the image to develop on the page. Keeping your mind open as it develops, you may perceive things about yourself or your issues, such as the red scribble represents your anger at your spouse, and the small blob in the corner is you, afraid of your anger.

Another way to do this kind of journaling is to begin with a question or thought in your mind, such as how you feel today, or what are you afraid of, and see what image appears. Either of these journaling techniques usually begins with a few minutes of meditation or relaxation to clear the mind, and ends with jotting down the thoughts that come to mind as you do the image and look at it afterward.

The other type of art journal is more of an exploration of art media and techniques than of the inner self. It is often a combination of different media, sometimes with a quote or other words mingled with the art. I have seen art journals with interesting found objects, such as buttons, jewelry, and lace, scraps of newsprint, photos, and pressed flowers. This type of art journal is created for its own sake, not for the message that the creator may glean from creating it.

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I looked online for info on art and healing, and found Kay Porterfield's website, which has alot of good resources on creative journaling, but not necessarily about healing. Catherine Whipple has a wonderful site on healing arts with lots of projects, coloring pages, etc..One interesting website is the pain exhibit, an exhibit of art created by people with chronic pain..  Like any subject, there are lots of books on the subject of art journalling.  Here are some of my favorites:  Art and Healing, Using Expressive Art of Heal Your Body, Mind and Spirit,  by Barbara Ganim; Illness and the Art of Creative Self-Expression  by John Graham-Pole, M. D.; and The Picture of Health Healing Your Life Through Art, by Lucia Capacchione.  Art Journals and Creative Healing: Restoring the Spirit Through Self Expression, by Sharon Soneff looks like another good one, though I have not read it yet.  These books all have info about art and healing, as well as exercises to do. 




 One of my favorite types of journals has lines on the bottom of the pages, no lines on the top half. I like to draw on the top half, and then write my thoughts down below the drawing. You can use pens or pencils for writing, colored pencils, crayons, or pastels for drawing, watercolor or acrylic paints, collages of found objects and cuttings from magazines.  If you plan to paint or collage, you might want heavier paper. Size is up to you, whether you feel expansive, and want large paper, or if you plan to carry it with you, you might want smaller.  Check out some of the books and online sources I suggested, or just grab your supplies and jump in.  I have added a widget on the right side of my page that will give prompts for expressive journaling, if you need an idea to get you started.

Attitude of Gratitude

I had been thinking of doing a post on gratitude, and this week it kept coming up wherever I went.  Must be a sign.  There are a couple of Sjogren's Syndrome (SjS) email discussion lists that I follow, you can access both at dry.org. (There are lots of other good SjS resources there, the email info is at the bottom of that page).  One list is SS-L, which is informational and medical oriented. The other, Talk-Sjo is more social support.  On Talk-Sjo, there are some people who post their gratitude lists every Monday.  Monday seems like a fitting day for this, since Monday often seems like the lowest day of the week for many people.
At my job as an Occupatonal Therapist on the psych units at a hospital yesterday, I was leading a group on Stress Management.  one of the topics that came up to help with coping was gratitude.  So what is an 'attitude of gratitude?' Here is a qoute from M. J. Ryan, auther of  Attitudes of Gratitude: How to Give and Receive Joy Everyday of Your Life "Gratitude helps us to return to our natural state of joyfulness where we notice what’s right instead of what’s wrong. It makes us feel complete, that we have everything we need, at least in this moment.”  This book is easy to read, and inspirational, a guide back to what is really important in life.The 10th anniversary edition came out last year.

An 'attitude of gratitude' is refocussing of the mind towards what is good in life, rather than the bad.  It sees the glass as half full, rather than half empty. To go beyond that, it acknowledges how tasty the contents of that first half of the glass were. According to research, as reported in Wikipedia,  people with an attitude of gratitude have decreased stress, increased happiness, more satisfaction in life, and have more positive ways of coping with adversity. 

They also tend to have higher levels of control in their environment, and higher  levels of self acceptance. These are areas in which people with chronic illness or pain tend to struggle. It is so easy to feel sorry for ourselves, to focus on the pain, or on the things we have lost. As you probably know from personal experience, that is not a pleasant way to live.

How can you develop an attitude of gratitude?  Look for the good in life, and acknowledge it.  Practice saying "I am grateful for...", or "Thank you, God, for..."  Do it frequently.  Let people around you know you appreciate them and what they do for you.  Try to catch yourself whenever you think or say something negative, and counter it with something positive.  When I get into bed, I always run through my day, and think of at least 3 things for which I am grateful. I usually include such things as my husband, and the ability to continue to work (part time), but I try to find unique things for each day as well.  I have found that this helps me sleep better.

Another practice I have heard of is to keep a gratitude list or journal.  These are more formal ways of what I do whan I get into bed.  By writing it down, you have extra benefits.  You think it, write it and see it, so it is engraved more firmly in your mind. Also, by having it in writing, when you are feeling down you can read through it, and remind yourself just how lucky you are. Here is info from ehow on creating a gratitude journal.   There are lots of gratitude journals you can buy from Amazon, or here is a place you can write one online:  At first, it may be hard to find things to be grateful for, but with practice it gets easier, and you may find yourself naturally looking for the positives.  This is a much more pleasant way to live than focussing on the negative.

WHEN LIFE GIVES YOU LEMONS, MAKE LEMONADE, continued

In my last post, I said that if life is giving you nothing but lemons, find as many things as you can to do with them.  That means being open minded about your choices.  That means looking beyond your previous experience to see what else there is.

Let's say you used to love skiing, but you can no longer balance or bear your weight on your feet.  There are special skis now that you can sit on.  Or maybe you can go sledding, or tobogganing.  How about sitting by the fire watching other people ski? Photographing skiers?  Teaching skiing?  I hear some of you thinking "But its not the same..."  True, its not.but it sure beats sitting at home doing nothing when the rest of the gang goes skiing without you. If you can no longer ski, which do you think will do you the most good- staying home moping, or finding an alternative activity?

I think the answer to that question is obvious, but how do you get past the "But its not the same..." thinking?  By deciding you want to.  Making comparisons to what you can no longer have will just keep you from enjoying what you can have. If you eat a lemon, hoping it will taste like an apple, you will be disappointed. If you eat the lemon knowing it is different, you may discover you really like lemons. Try alternative activities with an open mind, exploring the pleasures they provide, without comparing them to anything else. If one thing doesn't interest you, try something else.

You don't have to look for activities related to the one you want to replace.  You may replace skiing with scrapbooking, or sewing, sculpting or playing the saxaphone.  Be open to new ideas, talk to people, browse online or in a bookstore, or maybe in a sporting goods store or hobby shop.  Maybe there was something you enjoyed in the past that you can pick up again. There are always choices.

WHEN LIFE GIVES YOU LEMONS, MAKE LEMONADE (OR LEMON PIE, OR...)

Several years ago, the expression 'When life gives you lemons, make lemonade'  was popular.  At first I liked it, because it reflected a positive response to negative life situations. Everyone has negative experiences in life, and it is easier to get through them if you can find the positive, and hold on to that.  I later realized that this expresson is too simplistic for ongoing negative situations, like chronic illness.

If life gave you a big basket of assorted fruit last week, and just lemons this week, but you expect your basket to have a nice variety again next week, OK, go ahead and make your lemonade this week, knowing next week you will again have your choice.  But what if most of the trees got chopped down, and all that is left is lemons, and you don't expect that ever to change?  The thought of nothing but lemonade makes my tongue hurt, and my acid reflux act up.

So what do you do?  You look for available choices.  Not many choices if all you have is lemons? True, your choices are more limited, but there are still choices, and the more open you are in your search, the more you will find.  How about lemon pie, lemon chicken,or lemon ice? 

About a month ago, I was leading a group on making choices at my job as an occupational therapist on the psych units of a hospital.  One of the patients cried in anguish,  "How can I have choices?  My daughter is dead!"  It is easy to see why he felt he had no choices.  Unfortunately, there was nothing anyone could do that would bring his daughter back.  The choice he most wanted was not an option, so it felt like there were no choices at all.  But even for him there were choices, and by the end of the session, he was able to see this.  He could continue to focus on his lack of the one choice he most wanted, meanwhile blocking out the possibility of anything else.  He could cherish the memories of his daughter, while looking for the positives he still had in his life, and focus on reattaching to them. He could look for a way to honor her memory, by making a donation in her name. There are plenty of other choices he could make, both positive and negative.  He just needed to learn to accept that the one choice he wanted most was't available, and it was time to look at the choices that were (it had been a year, and he had not been able to accept her death).

Any permanent, life altering change can be hard to accept.  I will do other post(s) on grief, which is a normal response to such a change. It can be very difficult to get beyond the unfairness of the situation, the 'why me?', to get to the realizatiion that the world is still turning, and life is still going on, and CAN still go on, despite what has happened.

If you have a chronic illness or chronic pain, sometimes the choices seem very limited. All your trees have been cut down except the lemon trees.  It is very easy to focus on what you can no longer do, and what you have lost.  Instead, focus on what you still have and can still do, and develop these areas.  Keep as active as you can, and look for ways to continue to do what you love in your life. If all you have is lemons, find as many ways as you can to use those lemons.

TO BE CONTINUED...

MINDFULNESS IN CREATING ART

I love creating art.  Any medium. I am always willing to try new things.  In my community I am the resident artist, called upon to create art for invitations, t-shirts, etc.  Several years ago I created a design for a t-shirt for a Jewish Festival at our temple.  They liked it so much that they decided to use it for the temple logo, reprinting all their stationary.  Now everything at the temple has my design on it.

When I am working on a project, I often get engrossed. It is a feeling like meditation, where nothing else exists for the moment except me and the art. Sometimes this happens naturally, other times I move into this state by practicing 'MINDFULNESS'.  This is a therapeutic technique based on Buddhist practices.  Mindfulness involves the non-judgmental awareness of every thought and sensation. I watch the tip of my Exacto blade as it follows the outline of my papercut design.  I watch the tip of the colored pencil as it moves across the paper, resulting in a line of color. I am aware of the environment around me, and I acknowledge the sounds, but it does not intrude. I am accepting of any thoughts that cross my mind, but I don't linger on them. My attentiion is centered on the here and now of the paper in front of me and what my hand is doing to it (with the help of the blade or pencil, of course).

According to Wikipedia, research has shown mindfulness may be helpful  in therapy for, among other things, chronic pain, stress, anxiety, depression, and substance abuse.  Most studies have been on using mindfulness based practices regularly over a period of time, such a 2 months.  While I don't practice it regularly, I do come out of a session feeling calm, quiet, alert and focussed.  I can't say how long this lasts, because I never paid attention to that.  I will, and will let you know. 

Try being mindful with some activity in which you engage.  I have heard (though I don't remember where) that mindful eating can help with eating healthier. Makes sense to me.  I can't imagine mindfully eating with a Big Mac in one hand and large fries in the other.  It really doesn't matter what activity you pick.  In fact, it  might be an idea to try it with an activity you don't especially like. For example, when you wash dishes, look at the plate when you pick it up.  Notice the colors, the curves, the texture, shine, etc.  Even notice the chip on the edge, accept it, and move on.  Watch the bubbles as they get swirled over the surface.  Look at how they reflect a rainbow of colors, how they look like a solid mass, but they feel soft and insubstantial.  Get all your senses involved. This would definitely transform a dish washing session.  If any unpleasant thoughts cross your mind, accept  that they are there, and move on.  Do the same with pleasant thoughts.  You are there as a non-judgmental observer. 

Give it a try.  Be non-judgmental with yourself as well, if your mind wanders, or gets caught up in some thought, that's OK.  When you realize it, accept it and move on.  When you are done with that activity, think about how you feel.  Do you feel different in any way? Try practicing mindfulness regularly.  It gets easier, and more effective with practice.

WINGLESS-A BIRD OF MANY COLORS

Yesterday I talked about the benefits of coloring.  Today I have an example of one of my pieces, which started out as a scribble, and developed from there. This is 'Wingless', colored pencil on black paper. The original is about 9" x 12".  I had just  started playing around with the idea of drawing on black paper, so I was scribbling and experimenting.  I did the body area first, just making strokes of differnt colors, overlaapping them, seeing what would happen.

I liked how it came out, so I decided to try doing some strokes with fewer colors, in a more organized pattern.  The area of the head developed from that.  I looked at the 2 areas I had colored, and thought it looked like some kind of creature.  I made a neck to connect the 2 parts, then added  the eye and the beak.  I then did the legs, then the tail, and added the plant to balance and fill in the space. 


I couldn't figure out what kind of wings would work on him, so I decided not to put any wings, hence the name 'Wingless'.  As an occupational therapist, adaptation and function are my middle names.  (Not really, but you know what I mean.)  I couldn't leave the guy helpless, so I taught him how to use his feet to take care of himself.  Here you can see how he uses his feet to feed himself.

Get yourself some paper, I prefer black, but you can use whatever you like.  Get yourself some colored pencils, I like Prismacolor best. Crayons and pastels, both oil and regular work  too, but unless you get the pastel pencils, you won't be able to do much detail.  Markers would work on white paper, not on black. Start to play. Make lines of different colors, see what happens. You may create a master piece, or you may not.  Set aside your criticle mind, and have fun.  If your scribblings suggest a pattern to you, like mine did, add in the details to complete your drawing.  If not, that's OK too.   Do as many drawings as you like. 

If you don't like the unstructured feel of blank paper, get some of the posters or coloring books I listed in Sheryl's Store, (the link is located on the right side of this page.)  Whichever you do, it should get you out of your self for awhile, so you aren't thinking about any of the negatives in your life for awhile.

COLORING: FUN AND RELAXING

There are many ways in which art can be used for coping.  One of those ways is to relax and occupy your mind with something soothing and familiar.  Often when we don't feel well we want to go back to a simpler time in our lives, and be taken care of.  I remember when I was young and had a sore throat, my mom would bring me hot tea and soup, she tucked me in by the TV, and brought me my coloring books to keep me busy.

We usually think of coloring as something just for children, but it really isn't.  I work on 2 adult inpatient hospital psychiatric units.  We have groups and classes going on most of the day for the patients on various topics to help them get better. We also provide them with word puzzles, jigsaw puzzles, and coloring pages for times when there are no groups.  The coloring pages are the most popular.  I have asked patients why they like them. They are not demanding, they are soothing, familiar, a way to keep busy.  My favorite answer is this:  when coloring a picture, you get to decide the colors, how detailed to make it, how much to do and when to stop. Sometimes in life it feels like that is the only thing you have any control over.

If you have a chronic illness or chronic pain, you can relate to the feeling of things being out of your control. Sitting and coloring won't solve your problems, but it can give you an area you can control, and it can take your mind off your issues for awhile. If you have children or grandchildren, coloring is something you can do together. You can create your own art on blank paper.  My favorite is using colored pencils or pastels on black paper.  You can draw a random scribble, then fill in each section with a different color or pattern.  Or you can buy a coloring book or poster to color.  They come in a huge array of topics and levels of complexity.

The 2 kinds of coloring pages people seem to like the best are velvet posters (top picture), and stained glass patterns (bottom picture).  Both tend to have alot of detail to color, and black background that contrasts nicely with bright colors.  I have found a nice selection of them on Amazon.com.  I have selected some that I liked the best, and put them in 'SHERYL'S STORE'.   Click on either of the links above to go to Amazon's website if you would like to pick out your own coloring pages, or aything else you might need.

I like colored pencils best, becuase of the level of detail possible, and the wide range of colors. Other good options for coloring are markers, which are bright and cheery, or crayons, which bring nostalgic thoughts to my mind when I use them.  It is up to you.  You can try various combinations of what to color on, and what to color with, and find what you like best. Keep an open mind.  Coloring is fun, relaxing, and a chance to be creative without having to think too much.

HAPPY COLORING!

SING AND GIVE (YOUR PAIN) AWAY

I hurt.  I think most people with Sjogren's Syndrome, all people with Fibromyalgia, and many people with and without chronic illness could relate to that.  I have one of those bodies that if you touch me anywhere, I hurt.  I get tendonitis very easily, then it takes months to go away.  I have often said that I would like to go to a body shop and get a new body.  My husband said he would like to come with me to help pick it out.

Currently, I have Plantar Fasciitis in my left foot, which I have had for about 10 months now.  I have tendonitis in my right elbow, which started 6 months ago, when we started pack and lugging boxes for our move, which was in January.  I have had pain in my right knee off and on for a month, which for the past 2 days has hurt whenever I move it or put weight on it.  Last night at Temple I started feeling sorry for myself.  I had a dilemma:  During the service, there are several times when we have to stand up or sit down.  I thought of using my hands to ease myself up or down to help my knee, but that would hurt my arm.  I finally figured out a way to use my left hand, and put most of my weight on my left foot.  Awkward, but doable.

The Social Action Committee of our temple talked about some of the projects they are involved in.  It got me thinking:   I may have pain, fatigue and other symptoms, but I also have a safe and comfortable home, enough food and other necessities, a job, and a family that loves me and helps me.  I went to a workshop on stress a few years ago, and the main thing I remember from it was the instructor telling us to say to our selves, "At least I'm not..." and find 3 things with which to fill in the blank. That really helps to put things in perspective. 

Helping other people helps you as well as them.  Donating money or other goods helps, but actually doing something helps more.  It doesn't have to be anything big. I like doing Random Acts of Kindness, such as complement a stranger on something they are wearing, or pull out a shopping cart and give it to the person who came into the store behind me.

I went to a new PCP (primary care physician) on Thursday.  He told me to always wear an insert in my shoe to support my foot, and to wear braces on my elbow and knee.  (My elbow and knee should have really nice smiles after this.) I already had these things from previous attempts to heal body parts. I pulled them out and put them on this morning.   They are blatant reminders that I have several body parts that are out of whack.  So once again, I was feeling sorry for myself.

We like to go to our Temple's Saturday morning Torah study class.  Before the class is a short service, which is always mostly singing.  I love to sing.  I don't have the best voice, but it isn't the worst voice either.  I don't care.  I sing because it feels good.  I have often heard people say, "You don't want me to sing, everyone would run out of here screaming",  (or variations on that theme).  Nonsense.  Unless you are in a performing choir, singing isn't about how it sounds It is about how it feels.  As my husband said, "When you get a room full of people singing off key, it sounds pretty good."  Children often sing, and no matter how it sounds, it makes us smile.  Worship in most religions throughout history has included singing.  I heard somewhere (though I can't remember where) that singing releases endorphins, the same 'feel good' chemical that our bodies release with exercise. When I am down, I like to put on a cd that is so familiar that I can sing every line.  It always turns me around.  This service did, too. 

The message of this post is to go out and sing while you commit Random Acts of Kindness.  Or you can do them separately, and spread out your 'feel good' activities.