Why I Write About My Health #NHBPM

A few years back, I realized I was approaching an important milestone: the 22nd anniversary of my leukemia cancer diagnosis.  It's a diagnosis that I received as a young adult at age 22. It was important because I knew once I got past this road mark, I would officially be living more years of my life as a cancer survivor than as a normal, healthy person.

I also came to accept around the same time that having cancer marked the beginning of my life with chronic illness.  Back in 1988, I was blissfully unaware that this could be a treatment outcome.  I thought that once I beat cancer, I was back to being 100% healthy.  That's because no one was talking about late and long term effects from cancer treatment back then, probably because not many cancer survivors were living long enough for this to be a problem.

Lucky me--I've survived cancer long enough to deal with a whole new set of health problems.

As I shared in my post My Illness Picture: Thoughts and Impressions On What It Says About Me,  I've got several cancer treatment related health problems, problems that interact and intertwine with a new crop of chronic health problems that emerged after a trip-and-fall accident in 2004.

I've spent the last 8 years of my life making sure all these health issues don't define who I am.  But they sure to explain a lot about me.  And there sure is a lot of talking I need to do about them.  In fact, over the past 8 years I've found myself wanting to discuss my health and the topic of living a better life despite chronic illness at least weekly...and sometimes on an almost daily basis!

For me,  my health problems totally rule my life.  They impact my thoughts, feelings and interactions on a daily, hourly and sometimes even on a minute by minute basis.

Unfortunately, I struggled to keep friends and family interested and engaged in an ongoing dialog with me on this subject.  What I learned is that talking about health on a regular basis was way too much for even the most supportive, kind and understanding healthy person. That's because healthy people don't usually find themselves talking about health.  That's not to say they are uninterested in the subject; they just don't have a need to discuss it regularly like I do.

As for me, I want to find my "new normal," i.e., what healthy is going to look like for me now that I am chronically sick.  The only way for me to do this is to have the opportunity and freedom to talk about all aspects of my health, the good, the bad and the ugly, whenever I want and as much as I want.

That is why I started blogging.

Today I share what is working for me in the hopes of attracting readers who will reciprocate and share with me what is working for them.  My blogging goal is to inspire others with chronic illness to discover how to rise above their health problems, to not just survive them, but thrive in spite of the challenges.  I truly believe that together we can make life better despite chronic illness.

It took time.  Back in 2009 my blog was as a soliloquy, with me writing and then patiently waiting for reader responses.  But I hung in there and waited for my blog readership to develop.  Gradually my soliloquies became diverse and interesting conversations with other people living with chronic illness just like me.  It's even spilled over into other social media outlets like Twitter and Facebook.

What can I say?  My blogging has helped me get much closer to my personal goal of a better life with chronic illness.  It helps me get the support I need, points out areas that need my attention, makes sure I "walk my talk" and keeps me making progress toward my health goals, among other things.  Plus through my blog, I've been able to contribute in meaningful ways to various online chronic illness communities.

My only misgiving about writing about my health?  I can't figure out a way to make it help pay my bills!  Although maybe someone reading this has some ideas for me on how I can accomplish this too...

A Friend Asks: So, Why Do You Write?

The loneliest people in the world we writers are. Except that, while we are conversing and laughing with ourselves, we manage to shed our loneliness . . . to scatter it as we go along.

~"What a Life!" 1928; quoted by Fred Hobson in Mencken: A Life, Random House, 1994

A recent e-mail I received encouraged me to write a post on the subject of why I write.

Overcoming Writer's Block

Before I can talk about my motivation for writing and the benefits that I have received from it, I need to talk about the actual physical act of writing, because chronic illness doesn't make getting words onto paper or a computer screen easy for me.

I am plagued with constant pain that travels from my neck down my arms and into my hands. When I use my hands too much, the pain travels from my hands up my arms to my neck. It's quite a vicious circular cycle. This constant pain prevents me from using a pen and writing on paper for more than a few lines. It also prevents me from typing on a keyboard for more than the few minutes. Since this is the traditional way that writers practice their craft, the first hurdle to overcome in my pursuit of writing has been finding alternative ways to write.

Using a speech-to-text program, specifically the computer program Dragon NaturallySpeaking, has been the solution for me.

That said, there is something almost unnatural about speaking out loud to write. For starters, I am embarrassed to do it in front of other people and worry about being overheard while I am in the process of "writing." After all, in my mind, writing is about being quiet, not talking.

I've also had a really hard time disconnecting the use of my hands from writing. In the past, writing flowed from my brain out into my fingers; the greatest challenge was getting the words typed quickly enough as they spilled out of my thoughts. Now my writing comes out of my mouth and there is a censorship that happens along this route: a process we all engage in when we have a conversation with another person. It's been challenging to just let the words flow out of my mouth when I am "writing."

Of course there's also the issue of technology interfering with the writing process. Speech-to-text programs need to be trained, and even then they can't always figure out what you're saying. Occasionally, they go rogue and start typing sentences that makes absolutely no sense what-so-ever. On occasion, I've had to postpone my writing and turn my computer off because I couldn't get the technology to cooperate.

Shedding Loneliness

I admit I wasn't much of a writer before I became chronically ill. I mean, sure, I wrote a lot of reports and grant proposals as part of my job as a social work administrator. And I occasionally attempted to keep a personal journal. But the truth of the matter is I never really had the time to devote to writing in any meaningful way because I was so busy with so many other things. Which was really quite too bad, since I always had the inkling somewhere in the back of my mind that I would really like to try taking a stab at writing a book.

So how ironic is it that one of the true gifts that chronic illnesses has given me is copious amounts of time which I can apply to the pursuit of writing?

Granted, it took some time to figure out how I could physically write after I became chronically ill. Then once I got that down, the Universe nudged me in the direction of blogging through my friend Cyndi. Like me, she experienced that inkling to write but could never find the time between work and all the other things competing for her time. After a shared conversation about the topic, she suggested that a friendly competition might get us both started writing in earnest.

Hence was born the "Blog a Day in the Month of May" challenge in May of 2009.  And the rest, as they say, is history.

Over to the past two years, as I have consistently written and posted to my blog, I have succeeded in connecting with many other people living with chronic illness like me. The act of writing and then sharing my writing with the world has truly helped me shed some of my loneliness. In fact, writing my blog posts has become the focal point of my day during the "work" week. It has become so important to me that if I miss a day due to my illness or events beyond my control, I feel a little sad, lost and ungrounded.

I've enjoyed writing so much that I actually started writing a second blog called The Seated Gardener where I share my passion for container gardening, another gift given to me by chronic illness.  Not to mention all the blog carnivals I participate in, other sites I guest post at and the social media places I participate in related to my blogging efforts.

Beyond Chronic Illness

All writers have to start somewhere and often the easiest place to start is writing about yourself. Surprisingly, living with chronic illness gives me a lot of writing material. Now that I have an established writing routine, I rarely find myself at a loss for a topic to write about as my ongoing adventure in learning how to live my best life despite chronic illness somehow always presents me with new challenges, discoveries and situations that lend themselves to blogging.

But I am finding that the more I write, the more I find myself drawn to trying out other genres of writing too.

One of the writing challenges I have yet to accomplish is NaNoWriMo: National Novel Writing Month. NaNoWriMo challenges participants to write 50,000 words during the month of November and bills itself as a novel starting exercise that can help you write your first book. The official NaNoWriMo event, filled with pep talks, support groups, online forums and badges, takes place every November, although anyone can choose to complete the challenge any month during the year.

I attempted NaNoWriMo in 2009 but was hampered by my physical limitations to writing and my uncooperative technology. I'm not sure why I didn't attempted it in 2010. I chose not to try it this year since I was in the midst of getting carpal tunnel surgery done on both of my hands--one at a time of course.

What I do know is that since the seed of NaNoWriMo was planted in my brain in 2009, the Universe has deposited within me four intriguing science fiction story ideas that I feel compelled to explore and develop. What these ideas will turn into, I'm not quite sure.  But perhaps it is time for me to start living my life vicariously through characters of my creation! Then I could ditch the chronically ill body that is holding me back from experiencing real-life and explore a realm where chronic illness can't hold me back. (Well, at least not as much as it does in reality!)

So now that I have the interest and motivation, maybe it's time to figure out how to remove these new roadblocks to writing longer pieces of work. Perhaps the key to completing this challenge successfully is modifying it so it is more doable for me, which might mean writing 50,000 words in 60 to 90 days instead of 30.  Whatever it is, I'm going to figure it out and of course share it with you here on my blog.

So, why do I write?

• To overcome the loneliness chronic illness imposes on my life.
• To become more passionate about and engaged in my life.
• To loosen the stranglehold chronic illness has on my life.

Thank you, my friend, for asking me this question.

Good Reads: Seven Posts to Savor

Image by kevindooley via Flickr

I admit that I have a weakness for memes, the quintessential blog writing prompt. So when I saw a tweet yesterday from the Problogger about completing this exercise, well I was all over it. So in this edition of Good Reads, I'm doing a bit of shameless self-promotion and showcasing some of my own blogs posts so you can get to know me better...

1) My first post

I started blogging at the now defunct AOL Journals and migrated my blog from there to Blogger in October 2008. I recently reprinted my first post from AOL journals dated January 2, 2006 here. But I should also highlight My Last 100 Days, the first post from my blog-a-day in the month of May challenge that I accepted back in 2009 from my good friend Cyndie. That challenge got me on the road to consistently blogging and made me into the blogger I am today. Thanks again Cyndie!

2) A post you enjoyed writing the most &
3) A post which had a great discussion

I really had a lot of fun writing the post My Dream Job and it caused quite a stir. Seems readers actually thought I was writing about a real life temp agency for people with disabilities! The beginning of the post was a pure work of fiction, but I think it highlighted the real need for employment opportunities for persons with disabilities. I want to thank the folks over at Bloggers Unite for inspiring me to write this post for Empowering People with Disabilities Day.

(Addendum: I was invited by the National Disability Institute to use the post My Dream Job create a video and submit it to their American Dream Contest in July 2010. I blogged about the invitation in My Dream Job: Record, Save and Submit and you can view my video submission on YouTube here.)

4) A post on someone else’s blog that you wish you’d written

I'll let you in on a secret ... I am not so good about reading other people's blogs on a consistent basis. In fact, if anyone out there has a system they use to accomplish this, please let me in on your secret! That's why I volunteer to help out with hosting blog carnivals because you have to read the posts to write up a good carnival post.

This is how I found this post you are not. at the blog Moosh in Indy while helping out with the ChronicBabe blog carnival. I LOVE this post and so wish I could be inspired to write a post like this. You have to check it out and leave Moosh some comment love...

5) Your most helpful post &
6) A post that you wish more people had read

I wrote My Favorite Fibromyalgia Coping Strategy because I wanted to help others get started making their lives fibro-friendly. I even submitted this post to the Patients for a Moment blog carnival. Unfortunately, this is a post that doesn't have any comments on it, which makes me think I didn't reach those in need of this information. I know the post series How to Become a Fibromyalgia Scientist, Embracing My Life as a "Fibromyalgia Scientist" and Fibromyalgia Scientist Case Study: Grocery Shopping cover some of the same information and get more hits. I just am partial to my liberal use of the word fibro-friendly in My Favorite Fibromyalgia Coping Strategy.

7) A post with a title that you are proud of

Hands down, it has to be My Advice: Don't Get Cancer. It probably should come with the subtitle: Words of Wisdom from a Long-Term Cancer Survivor. I am proud of it because it is short, sweet and to-the-point with a kick of audacity and a big no duh! sprinkled in for good measure.

O.K., so I probably highlighted more than seven posts, but hey, they all are great representations of some of my best blogging. It goes without saying that I really enjoy the challenge of blogging and feel I get better and better with each post I publish. Which reminds me once again that there are some great benefits to working on living my best life despite chronic illness.

I challenge you to complete this meme too! Leave me a comment with the link to your Seven Posts to Savor and I promise to come by to read it and leave you some comment love. And let me know if you want to throw down the gauntlet and participate in a blog-a-day for a month challenge too.

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One Autumn Day, I Took a Trip

Image by kohtzy via Flickr

One Autumn day,
I took a trip
upon a path of brick.

Not my fancied
destination,
"How did I get down here?"

My trip gone wrong,
on my belly,
the trees and sky above.

A bit in shock
And unsteady
I kneel and stand; I'm dazed.

Was I O.K.?
I could not tell.
"It's just a small detour."

No! Seems it was
a great big Fall:
Now plagued with aches and pains.

Yes I regret,
this Autumn trip;
that life it stole away.

If I could change
a couple things:
no trips, no Falls, no pain.

None of Us Is on the Same Path

Image by Łukasz Strachanowski via Flickr

Charles Caleb Colton:

Happiness, that grand mistress of the ceremonies in the dance of life, impels us through all (life's) mazes and meanderings, but leads none of us by the same route.

We all want to be happy; it seems like it is embedded in our DNA. So when we face a lack of happiness, naturally we feel compelled to do two things: complain and regain our happiness.

The biggest challenge in life is to find happiness no matter what each day brings. Learning to see happiness as your traveling companion, not a destination, is life's greatest lesson. For some, it may be a lesson it takes a lifetime to learn; for others, it's a lesson it takes a lifetime to master.

So why is it, when someone close to us faces a major life change or difficult life-altering circumstance, do we insist that they "be positive" in the face of their adversity? Why are we disappointed when someone appears to wallow in their sorrows? Why do we judge someone who is having problems coping with their pain?

Clearly, how someone chooses to face their struggles affects their success: if they deny them, their problems will not go away; if they face them, work through the thoughts and feelings, they stand a chance to find happiness again. Facing the obstacles that get in the way of our happiness can be scary, overwhelming, disappointing, irritating, frustrating, maddening, sorrowful, painful, miserable and weary. Feelings, once felt, dissipate with time, but sometimes we get stuck and have problems moving forward.

In the end, perhaps it is as simple as remembering that we are all on different paths. Ever people-watch when you go to the park? You'll see that some people walk fast, some walk slow and some just sit on a bench. Some people stop to smell the flowers, to throw the ball back to the kids playing soccer or to chat with other park-goers. Every once in a while, someone happens to be under a bird when it poops; sometimes a person doesn't look where they are going and steps in dog poop.

As we all traverse the maze of life, the greatest gifts we give each other are a listening ear, compassion and understanding, honest feedback and the time and space to figure things out for ourselves. The greatest gifts we give ourselves in dealing with other people are taking care of ourselves first and other people second, accepting that we can't change other people and exercising out right to set limits and boundaries with other people. It serves us well to remember that we all want to be happy and just because someone is on a different path doesn't mean they are lost.

Oh My Aches and Pains! featured in Grand Rounds Blog Carnival

I am so honored to be chosen as one of the bloggers participating in the Grand Rounds Blog Carnival - Volume 5.47 hosted by Invisible Illness Week.

Check me out under the heading "New Teachers."

"And then we have to get to know these new doctors, explain our whole story again, decide if we like him or her, and see if the doctor will even “accept” us as a patient. Selena writes in Tomorrow I See a New Doctor how shifting her attitude from seeking a cure for her illness to self-management is an important step."

Thank you for including me Lisa Copen and Invisible Illness Week!

Fulfillment Friday, a.k.a. The Results of Tomorrows Past

Image via Wikipedia

Wow, Fulfillment Friday sneaked up on me this week. Seriously, did seven days go by already? I must have been busy or having fun, or both, to make the week fly by like it did ... or did I have a spectacular attack of fibro fog?

Here are my accomplishments from this past week:

1. Researched how to create a freelance writer's resume (and considered that maybe I should be offering my services as a resume writer.)
2. Completed my own freelance writer's resume.
3. Turned my resume and three "clips" (i.e. published writing samples) into PDF documents.
4. Submitted my new freelance writer's resume and clips to Jenni at ChronicBabe.com to apply for the "fibro-writer" position she advertised. Received a nice email today acknowledging that my submission was received. Now I need to be patient and let the universe work its magic.
5. Harvested tomatoes, figs, green beans and radishes from my container garden.
6. Helped out at Robert's parents' house, watering plants and doing other miscellaneous tasks. BONUS: The boys (my dogs) got to have fun running around in their backyard.
   
7. Enjoyed Brunswick's graduation from the six week Advanced Training at PetsMart. Brunswick and I are a great team; we're almost ready to take the Canine Good Citizen (CGC) test.
8. Checked off some of my Priority Health Maintenance Appointments Not to Be Missed: annual gynecological exam and annual mammogram. By the way, "the girls" are fine.
9. Blogged every day.
10. Participated in my first blog carnival, the 5th edition of Patients for a Moment. So exciting!
11. Had some fun with Google search and discovered my blog is getting some mentions from others, like Wellsphere.com and the Worldwide Association for ME/CFS Awareness and Research. Very cool!
12. Accomplished my goal of incorporating more rest into my day, which was very necessary given how busy I was this last week.
13. Lucky number 13: Finished the book Middlesex by Jeffrey Eugenides.
    

Looking back on a week of tomorrows past, I am proud of my accomplishments. Moving into a new week, I will review the priorities I set last Saturday and renew my determination and commitment to get the things that got put on hold this past week done.

Here's to tomorrow!

Tomorrow I Just Might Achieve My Dream

Image by Michael Hirst via Flickr

Novelist Sinclair Lewis was supposed to deliver an hour-long lecture to a group of college students who planned to be writers. Lewis opened his talk with a question:

"How many of you really intend to be writers?"

All hands went up.

"In that case," said Lewis, "my advice to you is to go home and write."

With that, he left.

Bits & Pieces - March 1997 Economics Press

I want to be a writer. Being a writer is an aspiration of mine, dreamed about before my life with fibromyalgia.

In my life with chronic illness, I've been faced with the postponement or loss of many of my dreams. Then I read Miryam Ehrlich Williamson's book The Fibromyalgia Relief Book: 213 Ideas for Improving Your Quality of Life and learned that Ms. Williamson is a freelance writer who lives with fibromyalgia. In her book she details how she is able to work as a writer. Among her strategies:

• She only accepts a limited number of assignments.
  
• She only accepts assignments with deadlines that allows her plenty of time to get the job done and deal with the unexpected that comes with living with fibromyalgia.
  
• She has a back-up writer lined up in case she flares-up and becomes unable to complete the assignment.

Even though I am a 30 out of 100 on the CFS/Fibromyalgia rating scale* with moderate to severe fibromyalgia symptoms most of the time, I haven't forgotten about the career I used to have as a clinical social worker and the satisfaction I used to get from going to work every day. Without a significant improvement in my health, going back to my social work career is not an option for me right now. But perhaps, following Ms. Williamson's example and her fibro-friendly plan, pursuing my dream of being a writer might be the silver lining to my chronic illness raincloud.

Sinclar Lewis said, "Go home and write." I started this blog in January 2006 and every day since May 2009 I've made the commitment to write a daily blog post. In addition, I continue to be a voracious reader. When I am able, I take writing classes through Santa Monica College Extension and attend a monthly book club I found through MeetUp.com. I am working on a freelance writer's resume, submitting articles to publications to build my "clips" and I am applying for a "fibro writer" job this week.

Tomorrow I just might achieve my dream of being a writer.

_____________________________________________________

*Rating scale developed by Bruce Campbell, PhD of CFIDS & Fibromyalgia Self Help

Miryam Ehrlich Williamson's books are available at Amazon.com.

My Routine: Working on Letting Go of Some Old Routines

Image by _william via Flickr

I admit that my response was to feel guilty when I heard that two of my high school classmates had died in the month of June 2009 from breast cancer. This guilt is a 21 year routine with a fancy name: survivor's guilt.

Truth be told, 21 years is a long time to feel guilty...

I think it started after my cancer treatment, when I read a letter my doctor had given my parents for the medical insurance company. My doctor wrote that I had only a 33% chance of surviving after my cancer diagnosis. I was shocked. Apparently no one thought to inform me of this fact at the time I was diagnosed with acute promyelocytic leukemia, which is very strange, given that I was 22 at the time of my diagnosis, an adult by society's standards. After being told I had cancer and would be admitted to the hospital that same day, I do remember my parents being taken aside by the doctors for a discussion behind a closed door without me. In retrospect, I believe the doctors informed my parents and they all chose not to tell me.

Why is this significant 21 years later?

At that moment I discovered just how close I was to being in the 67%, that is, not alive at that moment, I felt overwhelmed realizing that I had been so close to death. So remarkable and terrifying, this knowledge after-the-fact filled me with a fear of dying that I carry with me to this day. The information literally freaked me out. Then I got really angry that no one had told me this. After all, it was my right to know how grave my situation was. I'm not saying I would have done anything differently, I just feel I had been robbed of the opportunity to feel that fear in the appropriate moment and process it during my cancer treatment experience.

Fear after the fact is a strange beast indeed. I began to question why I was alive and why some of the young adult cancer patients I met and befriended were not. After all, there were no obvious differences between us. I did not see anything different, special or exceptional about myself that would entitle me to be a survivor over my friends. We all deserved a chance to keep living. I could not make sense of it; I wanted desperately to make sense of it.

As for my fear of dying, there may be hope for me yet. I recently discovered this quote:

"We can help those afraid of dying..
...but how do you help those afraid of living?"
--Plaidypus

Now that I live with chronic illness---chronic pain, chronic fatigue, dysautonomia, Hepatitis C infection and Type 2 diabetes, all late effects and complications of my cancer treatment 21 years ago---I wonder what my friends who didn't survive cancer would think. Would they have wanted to survive their cancers too only to go on to deal with a whole range of long-term and late effects related to the cancer treatment they received? Living with chronic illness can be a real ordeal and there are days when, for a few microseconds, I regard being a cancer survivor as not that much of a blessing. What I have gained in extra years of life has been paid for by losses, unrealized dreams, worries, struggles and disappointments. Thank goodness I am flexible in the face of change, otherwise I would be in a million little pieces by now...

My friend Julie, who lost her battle with colon cancer in 1989, used to say that cancer was like the sword of Damocles: you never knew when it would swing the other way and chop off another piece. Watching from her place in heaven, I think she would also say that life as a cancer survivor is an equally precarious situation in which chance delicately dictates whether further tragedy will strike.

Perhaps now I can let go of my survivor's guilt, knowing that cancer survivorship, like cancer, is also a double edged sword.

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My Routine: Learning to Live Harmoniously With My Chronically Ill Body

Image by Oberazzi via Flickr

I went to help a neighbor today with the sprinkler controllers I own and they recently purchased, so I didn't get a chance to take some pictures to show you "how my garden grows."

So instead I am going to share with you something that I wrote a while back that seems to fit with my exploration on the topic of routine. It is a series of four questions about my relationship with my chronically ill body, which is what I am trying to accommodate with the new routine I am seeking to develop. So here it goes:

1. On days when I have a lot of symptoms (i.e. flare-ups), what is my relationship to my body?
   Someone once told me that our bodies communicate with us in three modes: whispering, talking and shouting. So on high symptom days, I would say that my body is definitely shouting at me. I have come to see my body as a guardian angel, warning me when things are wrong, and I strive to listen when it "whispers" or "talks" to me; that is my goal. When it is shouting, well it's more of a child, so instead of getting angry, I try to comfort it and make it feel better.
2. When I have a flare-up, what do I say to my body?
   When I first became chronically ill, I used to shout back at my body, "Stop it! Cooperate!" Now I ask it, "What are you trying to tell me?" and reassure it "Everything is going to be O.K."
3. At what times do I have a harmonious relationship with my body?
   With practice and lots of trial and error, I have learned that when I honor my limits, adopt a more understanding approach and achieve a balance between paying attention to my symptoms and distracting myself from them, I achieve a more harmonious relationship with my body.
4. How does it feel when I have a more harmonious relationship with my chronically-ill body?
   I feel more centered and grounded. I feel more a part of the world around me because I can participate in more activities and social events.

These questions r

Image by Lighthelper :) via Flickr

emind me that the purpose of a routine is to create more days focused on what I can do and minimize the number of high symptom, flare-up days when I can't do anything at all.

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Not Falling Into The Same Old Routine

Sometime I wonder how it is that blog post topics seem to just fall into my lap, like I am supposed to be writing about routine right NOW. It happened last month with the heroes posts and I connected with some pretty interesting people and promotions during the month of June 2009. But I digress...

Remember that definition of routine I posted a few days ago? Let me refresh your memory courtesy of Dictionary.com:

4. an unvarying and constantly repeated formula, as of speech or action; convenient or predictable response: Don't give me that brotherly-love routine!

Well, yesterday I received an email that reminded me of this definition of routine. It got me thinking about the mental and emotional routines people get themselves entrenched in when it comes to viewing the world. It's like they wear a very specific set of prescription lenses that only allows them to see one aspect of the whole.

It's like the story of the The Blind Men and The Elephant: they each felt a different part of the elephant and came away thinking it was a plough, a grainery, a pillar, a mortar, a pestle and a brush. They then start arguing amongst each other, denying each other's report and failing to put all the pieces together into a whole, accurate picture. The moral of the story is:

O how they cling and wrangle, some who claim
For preacher and monk the honored name!
For, quarreling, each to his view they cling.
Such folk see only one side of a thing.

Needless to say, it is all a very disheartening state of affairs. I heard myself shout in my head, "Don't give me your victim routine."

I've learned that when you are dealing with someone with a victim complex, like the person that sent me this email, your opinion doesn't matter. Apparently when you act like a victim, it means you never have to apologize. When you act like a victim, it makes you always right and free impose your values on others. So when other people dare to disagree, you get to say you are being persecuted. When someone refutes your point-of-view, it gives you the right to further assert your opinion onto others. It means that when you decide to stop being a victim and reclaim your personal power it entitles you to overpower other people.

I deleted the email without reading it. Being chronically ill, I've come to the realization that I can't have contact with this or any person who takes so much out of me and gives so little back to me. So dealing with someone else's victim complex is one routine I do not want to continue.

Can Routine Help Me Manage My Fibromyalgia?

As with all Google searches, sometimes you have to adjust the keywords you enter to get the results you are looking for. So after searching "routine" for my last post, I added "routine + fibromyalgia" and "routine + chronic fatigue" to see if I could obtain different results. As with the Fly Lady from my post yesterday, I think I have hit the jackpot again with an article from my friends at CFIDS & Fibromyalgia Self Help.

I met Joan Buchman; she was the facilitator of an online group through CFIDS & Fibromyalgia Self Help . She wrote a great article entitled How I Use Routine to Successfully Manage Fibromyalgia and I found the following questions from her article especially helpful:

I arrived at this routine by asking myself a number of questions...

1. What are my present pain and fatigue levels?
2. What have I learned so far about minimizing these symptoms?
3. Are my social interactions satisfying?
4. Am I allocating my time optimally to perform health maintenance, do home chores, have a family/social life, and engage in satisfying hobbies?

These questions seem like the appropriate guideposts for really getting started and creating a routine for myself. This advice makes me think that some of the other tasks I identified in my post Can I establish a routine in 31 days? need to be completed and/or incorporated prior to actually mapping out a routine. I need to write down my personal rules because they help me minimize symptoms and make sure I don't overdo it. I need to shorten my activities periods so I don't spend all my energy on one task, which would make it possible to switch between activity categories like home chores, health maintenance and hobbies during the day. I really need to take regular, daily pre-emptive rest breaks to recharge during my awake hours, because I already know that going, going, going all day is really, really, really no longer possible.

Joan also says,

"Some people may think that having a routine-driven life is boring, but for me it has been liberating. My illness is not running my life, I am. By being realistic about the illness and my symptoms, I am taking conscious steps to feel as well as I can."

Do you think she knows about me and my aversion to the word routine?

So am I any further along in developing my routine? I definitely have more to consider and some more reading to do. I think my next steps include observing what daily activities I find myself already engaged in on a daily basis and answering the questions from Joan Buchman's article above. Well, that and to stop thinking about the word "routine" as a negative and perhaps stopping with all the robot images for these blog posts.

Other People's Routines

I did a Google search on "routine" and found the following 5 websites. What I found I think is interesting, ridiculous, funny and thought-provoking; allow me to share it with you:

1) From the blog ZenHabits.net where Leo Babauta writes about "Simple Productivity," he devoted one whole post on his morning routine:

Morning Routine

1. Wake at 4:30 a.m.
2. Drink water.
3. Set 3 Most Important Things (MITs) for today.
4. Fix lunches for kids and myself.
5. Eat breakfast, read.
6. Exercise (run, bike, swim, strength, or yardwork) or meditate.
7. Shower.
8. Wake wife & kids at 6:30 a.m.

To each their own, I say. This definitely would NOT work for me and, in fact, seems almost ridiculous for me to even consider, given my delayed-phase sleep disorder, post-exertional fatigue and lack of children.

2) Moving on, I discovered the blog Daily Routines: How writers, artists, and other interesting people organize their days. I like this blog and hope that its author resumes posting soon (hint, hint!) This blog highlights the daily routines of people like Simone de Beauvoir, Barack Obama, Stephen King and Mister Fred Rogers.

From the Simone de Beauvoir post: I'm always in a hurry to get going, though in general I dislike starting the day. I first have tea and then, at about ten o'clock, I get under way and work until one. Then I see my friends and after that, at five o'clock, I go back to work and continue until nine. I have no difficulty in picking up the thread in the afternoon.

It's going to take me some time to review the posts there, but so far, I am liking that there are a variety of routines discussed, some that might work for me.

3) Leo Babauta makes a second appearance on this post; I guess he is a prolific writer. This time it's a post on the Mashable.com website and an article entitled HOW TO: Simplify Your Social Media Routine. I know I panned his Zen Habits post about his morning routine, but I happen to like this one. In summary, his advice on this topic is:

HOW TO: Simplify Your Social Media Routine
Step 1. Use simple tools to make the most of social media.
Step 2. Focus on sending out high impact messages.
Step 3. Let go of the need to read everything. Learn to scan.
Step 4. Figure out which social media give you the most value, and simplify.
Step 5. Form close relationships with people who give you the most value, not everyone.
Step 6. Manage your time wisely.

Since the beginning of this year I have really jumped into social media with both feet and I am eager to study this article more to make it simple for me.

4) Now for the heavy-duty stuff, which I unearthed at the FlyLady.net website. The Fly Lady shows you how to get serious with routines. I mean, she has examples of routines for before bed, in the morning, a basic weekly plan and weekly checklist. Here is a sample of the weekly plan:

Monday: Weekly Home Blessing
Tuesday: Free Day
Wednesday: Zone Clean and Partial Desk Time
Thursday: Grocery and Errand Day
Friday: Paperwork and Miscellaneous
Friday: Date Night
Saturday: Family Fun Day
Sunday: Renew Your Spirit Day

This is some meaty stuff. It is going to take some time to go through all this information and the website overall, but I have a good feeling about the Fly Lady. I'm thinking this might be the stuff that I have been looking for and what helps me create my own routine, with some personal modifications of course. I may be writing more about this particular website in the weeks to come...

5) Now for some fun! I am developing a healthy love of the website The Onion. It is a total spoof news website that points out all the funny in the news, entertainment, sports, politics and more. So if you are in the mood or need a good laugh, click to read Workout Routine Broken Down For Coworker. And I hope you find my posts more interesting than Kim found Eric's explanation of his workout routine!

Routine Defined, Or Why I Cringe When I Hear The Word

I think my problem with establishing a routine stems from the word itself. Here is the definition from Dictionary.com:

rou·tine (n)

1.	a customary or regular course of procedure.

2.	commonplace tasks, chores, or duties as must be done regularly or at specified intervals; typical or everyday activity: the routine of an office.

3.	regular, unvarying, habitual, unimaginative, or rote procedure.

4.	an unvarying and constantly repeated formula, as of speech or action; convenient or predictable response: Don't give me that brotherly-love routine!

Origin: 1676, from Fr. routine "usual course of action, beaten
path" from route "way, path, course" (see route) + subst. suffix -ine.

O.K., my initial reaction is, "Routine sounds boring!" I don't see myself as being a typical or everyday kind of person. It also sounds like something a robot or machine does, especially when it comes to the rote, unimaginative, unvarying and formula parts of the definition. And I definitely pride myself on being imaginative and creative not habitual and unvarying. Routine seems like a negative habit to have, one I don't want to associate with myself.

My self-image is of someone who goes with the flow and let's the day take me where it will. Maybe that's where the problem lies. I mean, who am I kidding, it's not like I pick up and take off on a moment's notice when I read a tweet that John Mayer is giving a surprise performance at the Hotel Cafe in Hollywood. I actually find myself saying no more often than not to last minute plans and definite no's to amusement parks and any form of standing in line or being outside in hot weather.

The definition is not appealing, but I'm not going to let this put me off. I think I need to go a few steps further in exploring this idea of routine and perhaps a place to start is to discover how other people apply this concept to their lives. So off I go to do some Internet research and see what results I get.

Until tomorrow ...