Signs of Spring and Endurance

Sunday my husband and I took a hike, our second this season, our second this week. We enjoy hiking, though he likes to keep moving, focusing on the exercise aspect, while I like to stop and observe nature. We started from a parking lot in Salt Fork State Park in Mideast Ohio, about 5 minutes from our cabin, and hiked about a mile along a bridle path, to a horse camp. We rested there, explored the camp which was interesting but deserted, and then headed back along the same path to our car.

Two significant things happened on our hikes. The first was that there was evidence of SPRING! Wild rose and another bush that I don't know the name of had little green leaves all over them in Salt Fork. On our previous hike, last Monday in the Hampton Hills Metropark in Summit County (back home), I had seen colt's foot, one of the earliest flowers to appear in the spring. So it is official- spring is arriving!  I always get cheered when I start seeing signs of spring.

The other significant occurrence also happened on both hikes. Usually, my husband has more energy and endurance than me. On both of these hikes, my husband was the first to say he was tired and needed a break. He keeps active when he can, but works long hours Tuesday through Friday. I work fewer hours, and have been going to the gym usually 4 days/week. It appears that it is paying off, in greater endurance.

Both the evidence of spring and the evidence of increased endurance motivate me to keep exercising and to keep hiking. One of my favorite activities at our cabin is hunting wildflowers. I have some wildflower identification books in which I mark each year when I find each species. It gives me incentive to traipse all over our property, almost 14 acres. I went out Monday looking for skunk cabbage, which should have been out before, but I could not find it three weeks ago when we were last there. I found it easily this time, maybe because I looked where I found it last year, instead of searching in another area. They say that whatever you are searching for will always be in the last place you look (that is because you stop looking for it when you find it).

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.

Paced Breathing

Last week I went to a two day workshop taught by Marsha Linehan, the originator of Dialectical Behavior Therapy (DBT).  She was fascinating, as much for her ego and humorous style as for her topic.  DBT is a therapy that helps a person change their thinking, and through that, change their emotions and behavior to be more effective and functional in their lives.  It will take me some time to process all that I learned, but I wanted to share with you one tidbit today.  It regards breathing.

I have written several times about mindfulness and breathing.  Dr. Linehan shared something that I had never heard before.  She said she asked Thich Nhat Hanh, a Vietnamese meditation teacher, peace activist and writer about how he teaches breathing. He said to breathe in slowly and deeply, pause, then breathe out a little longer than you breathed in.  I had always heard that the breath out should be ‘as long as’, or sometimes I heard ‘at least as long as’ the breath in. 

Dr. Linehan said for her, for example, a pace of 5 counts in, pause, then 7 counts out works best.  I tried that, and it worked for me as well.  Your pace may be a little different. Give it a try.  Count as you breathe in, pause, then breathe out, counting a little longer.  Find your own pace.  We tend to focus more on breathing in than on breathing out, probably because we know we need the Oxygen, and we think that breathing out just gets rid of the resulting waste air.  But think about it.  If we don’t breathe out enough, where is that Oxygen going to go when we breathe it in?  By breathing out longer than we breathe in, we ensure that there is sufficient room in our lungs for a good deep breath. 

This paced breathing is a way to focus your mind.  It influences the autonomic nervous system to slow down your heart rate and other subconscious functions.  It calms the mind, and reduces anxiety and panic.  (The symptoms of anxiety and panic are regulated by the autonomic nervous system).  It not only helps the mind to relax, but also the body.  When I breathe in and out without counting, my mind always wanders.  The counting helps to keep my mind on the breathing, improving the quality of my meditation.  I have also noticed that I am less likely to yawn if I breathe out longer than if I don’t.