Walk in the Sun

Yesterday was a gift for those of us in Northeast Ohio.  We had sunshine, and near 60 degrees F.  We have actually had several such days this year, an unusual number for winter in this part of the world.  I took a 40 minute walk outside, and came home with a smile on my face, and energy to spare.  What a great combination- walking and sunshine.  Our bodies need both.  
Sunshine promotes the production of vitamin D, which is sometimes referred to as a hormone, because of all the positive influences it has in our bodies.  Besides that, people tend to smile more on sunny days, and I sure noticed yesterday that people were friendlier and more social wherever I went.   I love the feel of the sun on my skin on days like this.  (Not so much in the middle of summer.) 
There have been hordes of research lately on how good walking is for the body.  It gives your heart, lungs, muscles, bones and most other parts of you a workout, and helps to improve your ability to function. It also feels good to move and to stretch.  Recent research has shown that exercise is good for people with Fibromyalgia.  It may hurt to move initially, but over time, exercise decreases pain and increases energy.  The key is to start near but not at your limit of what you can do comfortably, and to increase very slowly, perhaps adding on a little bit more each week of whatever you do to exercise.
I have become more active over the past year, doing water walking, Pilates, and on nice days, walking or hiking outside.  I have more energy than I have had in years, and fatigue hits me less often.  My pain has improved some, but not as noticeably.  I seem to get grumpy less often, too.
Sunshine and a walk is a combination I highly recommend.  Don't overdo either one, though.  There is such a thing as too much of a good thing.

Journaling and Art Journaling

I have written several times about journaling and its benefits.  I came across a brief item in Parade magazine recently that confirms these benefits.  According to a study at the University of Kent, England, subjects who vented to a friend when upset often ended up feeling worse afterward.  Their suggestion: journal first, then talk to a friend about finding the humor or silver lining in the situation. The researchers found that this two step strategy was the most effective way for reducing stress. You can get your frustration and negative feelings out without worrying about being judged, while still benefiting from the support of a friend.
Your journaling can combine the 'he said/she said' with how you felt.  While journaling, emotions have a chance to calm.  Distance and time can bring a new perspective to the situation.  This is often enough to diffuse any anger or negativity, and you won't feel the need to consult with a friend.  The choice is yours.
Another option for journaling, either after or instead of the above format, is using art.  I use this especially when I am feeling confused or uncertain how I feel.  Take a piece of paper (I like using something bigger than standard computer or copy paper), and crayons.  The larger paper gives you room to be expressive without feeling constrained.  Crayons are good because people tend to be less inhibited with a medium usually associated with childhood.
Without planning, pick up whatever color crayon calls to you, and start to draw.  Let your drawing develop naturally, without too much thought.  My usual art style is very precise, but when I do this kind of drawing, it is often more scribbly.  When I am done drawing, I sit back and look at the drawing to see what it has to tell me.  As I am drawing, my mind tends to find connections and associations to my life:  this scribble over here is me, and this line is the wall that I put up... etc.  On the back of the page, or on a separate paper that I attach to this one, I write out my these observations,thoughts and feelings.  I always date these drawings, and often include a sentence or two giving the context, if this is not clear in what I have written.  I have a portfolio of these drawings, and I find it interesting to look at them from time to time, and look back at those periods of my life from my present vantage point.  Issues that seem huge at the time often turn out to be minor blips.  I am much calmer and less reactive than I used to be.  Maturity, like time and distance, gives a new perspective.  

Self Esteem

Self esteem may play a big part in motivation. If you feel good about yourself as a person, you are more likely to make choices that support your well-being. You are more likely to be willing to put in effort to take care of yourself. If you don't feel good about yourself, you are more likely to have thoughts such as 'It doesn't matter, anyway, why bother,' and 'I'm not worth fussing over.' Thoughts like these decrease self esteem even more, and make it less likely you will make the effort to take care of your needs.

Chronic pain/illness effects self esteem

Loss of job leads to loss of identity and inability to support self

Uncertain future

Decreased ability to participate in family/friends/community activities

Loss of ability to do previous activities

Feeling worthless, depressed.

Others not believing us leads to self questioning and self doubt, defensiveness, loss of support

Feeling guilty for needing help, or not being able to do previous tasks/responsibilities

Other factors that influence self esteem

Negative messages from parents and others

Failure or difficulty at any life-stage

Negative messages that others give us become our own messages to ourselves

Being overly critical of ourselves, expecting more of ourselves than we can deliver, proving we were right to be critical. This sets up a downward spiral.

Enhancing self esteem

'Catch yourself in the act' of being negative, and change to a more positive message.

Have compassion for yourself. You are a worthwhile person, capable of loving and worthy of being loved.

Make a list of all your strengths and of everything that you have accomplished in your life so far. Use this for positive self-talk.

Don't compare yourself to other people, or to yourself when you were well.

Make the best use of your knowledge, skills, and current abilities.

Don't limit yourself. Look for new ways to take more control in your life, starting with your self-care. Are you doing everything possible to take care of yourself physically? Managing your diet? Getting enough rest? Focus on what you can do, not on what you can't do.

Surround yourself with people who care about you and support you. If there are loved ones who don't understand your illness, explain it to them, get brochures for them, or take them with you to a doctor visit.

Accept that some people may never understand. Refuse to buy into the negative judgments of others. Tell people who constantly criticize you that this is unacceptable, and/or limit your time with them.

Practice not responding when others push your buttons.

Talk to a mental health professional to help you to sort out how you are feeling about yourself, and help you to work on building up a more positive outlook on yourself and the world around you.

Your illness is what you have, not who you are. Your illness is not your fault, so it doesn't make sense to feel guilty about it and how it affects you.

Take classes, volunteer, find online opportunities, read, find meaningful hobbies and outlets, go out into nature, make peace with your illness, grieve, cherish the little moments, love, pray, write, draw, create, do what you can do, journal, talk, find others who understand, practice an attitude of gratitude.

We don't have control over having chronic pain or illness, but there are many things we can control, including how we view the pain/illness, and how we interact with it and with other people. Having a sense of control in our lives improves self esteem. Accepting life as it is and working from there also has a big impact on self esteem. You are a person, not an illness. Don't let your illness take away your personhood.

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.

Not a Hand to Stand On

Usually, when we have an injury, we look for ways to adapt our actions in order to continue to take care of business. If the injury is one arm, we have another arm that can usually be substituted, though often more clumsily. I am in a situation where both arms/hands have problems. My right arm (my dominant one) has had a recent recurrence of a pain that surrounds my shoulder blade on that side when I use that hand unsupported away from my body.

The instinct would be to decrease use of that arm, and to use it cautiously. This would require increased use of my left hand, and therein lies the problem. I have developed trigger thumb in my left hand, for which I will be having surgery on January 12. The tendon at the base of my thumb has a knot in it, which causes my thumb to snap whenever I try to bend or straighten it. It is painful, especially if my hand has been resting. Opening jars and grasping large items is out of the question.

So what to do? I have been planning ahead, doing ahead of time some tasks that I know are coming up that require 2 hands. I have also been looking at simple adaptations that make two handed tasks possible for a one handed person. Items such as shampoo, soap and hand lotion in pump bottles are an example. Pull on clothing, without buttons or zippers are easier to get on and off, such as sweats and t-shirts. Looser clothing is also easier. There are slip-on shoes, or shoe laces that are elastic. My favorite kind are coiled. You lace them into your shoes instead of regular laces, and they make your shoes into slip-ons that don't require tying.

This topic is complex, and too big for one blog post. Here are two good references with more info on how to do things one handed:  Wiley Library; Stroke.org.au.

So back to the issue of how to do things when both sides have problems.  This takes some individual assessment and problem solving. I have issues with my left hand and my right upper back.  As long as I don't have to grip anything in my left hand, I can use my left arm to hold or carry things.  I can use my right hand, as long as I don't have to do anything sustained with my arm unsupported.  Most tasks can be done with some combination of these limitations.  For tasks that can't be done, there are always the assertive skills of asking for help or delegating. Some tasks can be postponed or just skipped.  My three questions for determining this are: 1.  Does it have to be done?  2. Does it have to be done by me?  3.  Does it have to be done now? 

Most activities can be resolved using the ideas above.  I am still working on how I will wash my hair without getting my left hand wet or keeping my right hand raised above my head.  

Grow Safely

I have been reading a book that contains a lot of wisdom: My Grandfather's Blessings, by Rachel Naomi Remen, MD. I mentioned this author in a blog about a month ago, and at that time I ordered several of her books. This is the first I have read. The subtitle of the book is Stories of Strength, Refuge and Belonging. Dr. Remen counsels people with cancer. Some of the stories are about patients' experiences, some are from teaching med students, and some are her own experiences, as a child with her grandfather (an Orthodox Jewish Rabbi), or coping with her own illness. (Yes, folks- she's one of us [people living with chronic illness]- she gets it.) The chapters are short, easy to read one, a few or many at a time. Each one weaves together a variety of elements to round out a point. I am thoroughly enjoying it, and have been marking some segments to use in blog posts.

I just read a chapter about a dream she had about a daffodil bulb planted in the ground, with a big rock directly above it. The rock is protecting the daffodil from growing in this, dangerous world. The daffodil says it needs to bloom, that is its reason for existence. Dr. Remen went to an acupuncturist for a pain in her back. During the treatment, the image of the daffodil and the rock came to mind, and she watched as the rock transformed into a greenhouse, and thus protected, the daffodil bloomed extraordinarily, made of light.  Instead of protecting the daffodil from blooming, it was now protected so it could bloom. Dr. Remen relates this story to a big decision she needed to make, and from it she found the courage to move forward with her decision.

I found another meaning that is smaller but closer to home for many of us. Being chronically ill and/or in pain, we place a rock over ourselves that keeps us from exposure to further pain or illness. It can be hard to determine how much we can safely do before we start to exacerbate our symptoms. We are instructed to stop before that point, but if we don't know where that point is, we may err on the side of caution, and stop too soon. In doing so, we may prevent ourselves from living our lives.

How can we transform our self-imposed life-hindering rocks into life-enhancing greenhouses?  That is up to each of us to determine.  Experiment with your limits. Allow yourself to step out of your comfort zone (literally) and live life. I'm not suggesting you ride the upside down roller coaster, but how about the carousel? You don't need to aim for a marathon, but try to increase (slowly, if need be) what you allow yourself to do.Take some chances. This is the only life you get (or so I believe). Live it. Many people with chronic pain and illness are depressed and disappointed by life.  Life isn't fair (that's true). But what restrictions are truly imposed by your illness and pain, and what restrictions are imposed by fear?  I wrote a post awhile back saying that sometimes it is worth it to go beyond your safe limits, knowing you may (will?) pay for it later.

In her next chapter, Dr. Remen discusses suffering. I will end this post with this thought: “In the depths of every wound we have survived is the strength we need to live. The wisdom our wounds can offer us is a place of refuge. Finding this is not for the faint of heart. But then, neither is life.”

Communist Thinking in a Capitalist World

“From each according to their ability, to each according to their need.”

People who are chronically ill, in pain or disabled often have feelings of uselessness, that they aren't full human beings or contributing members of society because they aren't able to do what they think is expected of them. For men, it is most often an inability to provide for their family that leads to this thinking. For women, it is more often an inability to nurture their family and care for the household that triggers it. These are very stereotypical role expectations, but even in our 'enlightened' society, this holds true for most people.

In a capitalist society, earning money is the prime objective. Until World War II, this meant men, women were expected to play a supporting role in this objective, by caring for the household and family. During World War II, so many men were at war, women were called upon to provide for their families, support the war effort from home, along with their usual roles. Many women discovered they liked working, they liked the challenge, the satisfaction of a job well done, the independence of earning their own money and the social contacts they made on the job. Men often took on some of the household duties to balance out the tasks, but women were generally still the person running the house. Hence, the roles that people feel most guilty about when not able to perform.

In a pure communist society, people are expected to work according to their ability, and they are given compensation according to their need. This sounds great, but human nature being what it is, some people looked for ways to give less than they were capable of, and/or to take more than they needed. Communism never quite works out the way it should.

So, back to my reason for writing about this topic. What if we could instill in our society's thought pattern the acceptance of the validity of this basic communist idea? I am not trying to restructure our whole society, just to change this one thought. Wouldn't it be nice if everyone recognized that people have different capacities and different needs, and that is okay? A person would be respected for who they are, not how much they produce or how much they contribute. It would be accepted that not everyone can work full time, go grocery shopping, vacuum or lift a child. It would be okay that some people need more sleep, more medical resources, or more help to do basic tasks. It could still be a capitalist world in which there was incentive to strive for excellence, for newer and better ways of doing things, but with a communist recognition that not everyone can do that. Those people are not any less valuable to the society as a whole, or to their families.

How does this play out in the real world? How can we apply this thinking to make this a better world for everyone? What can we change so that people with illness, pain and/or disability won't feel less than others, and/or less than themselves? These are questions worth pondering.

We, as individuals, don't have the power to change the thinking of society as a whole. We do have the power to change our own thinking, and to influence the thinking of those around us. We can stop thinking of ourselves as less than, as damaged goods, as inadequate. We can stop apologizing for not being able to do what we used to do, or what we think we are 'supposed' to be able to do. We can start empowering ourselves to ask for the help we need, and to accept it graciously when offered. We can start taking pride in ourselves as we are, for what we can do, and what we can offer to our families and our communities.

I could go on and on, but you get the idea.  Be yourself.  Be proud of yourself.