Bits and Pieces: My Week In Review

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It's been a long first week of 2011, so today's post is going to be short, sweet and to the point.

Monday

I'm still looking for your answers to this week's Question of the Week. The lack of comments is making me think you all made a New Year's Resolution to not make any more resolutions! Which is cool and comment-worthy too, you know.

Tuesday

I've been battling insomnia all week long and it showed when I first posted My Advice: Try Walking In My Shoes. I was somewhat appalled when I went back to read it after a few hours sleep. A revision was definitely needed.

So, note to self: don't write when you can't see straight from sleep deprivation!

Wednesday

Then I got my creativity on, making a video on the same theme. Only I ran into several problems. I discovered I was really out-of-the-loop on contemporary issues in music and got a quick schooling in what is and isn't O.K. I didn't let that stop me and I've revised my original post (second time this week) with an updated video I like so much better.

I hope you like "take 2" better too...

Thursday

I announced my Mission 2011 and wrote a really meaty post with lots of great information. I was inspired by a tweet from a friend that said something like, "I hate it when I see a blog post title that advertises a solution but when I read the article, I can't find it in there." Now I am thinking I might have gone seriously overboard cramming tons of ideas and concepts into a 467 word post.

Do me a favor: read it and give me some feedback.

O.K., I'm done. My plan is to devote some serious time to catching up on my sleep this weekend. I hope you have a nice, restful and peaceful weekend too and I'll see your back here on Monday.

Question of the Week: What Are Your Goals for 2011?

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I know that New Year's resolution have a bad rap, and yet I still eagerly participate in this yearly ritual.

Perhaps it is because I want to have a fresh start each year. However, in breaking with tradition, I have come to see this less as stating resolutions and more as an exercise in yearly goal setting.

I often get started by writing down a list of my intentions for the next year.

I find having goals and intentions in mind helps me then create a list of action steps or targets that I can work on throughout the year. Now that I am living with chronic illness, I find that narrowing my focus to one of two goals per year, rather than an endless list of all the things I'd like to change in my life, makes this process simpler and ultimately more doable.

Of course much of my focus continues to be on my quest to create my best life despite chronic illness.

I realized I as was recording a recent video blog post that I already have a new goal in mind. I want to find the "sweet spot," a location inside my energy envelope where I have some energy left after each day. I want to find out if living in the "sweet spot" allows me to bank energy that my body can use towards healing. You can learn more about this concept by watching my Energy Envelope Tutorial.

Today I want to hear from you. Do you set New Year's resolutions for yourself? Do you take the time to do some goal setting or write down your intentions at the beginning of the year? Or was your resolution to give up making resolutions?

Kindly leave your response to the weekly question either here using the comment button or by going to the Oh My Aches and Pains! Facebook page.

I also want to take this opportunity to wish all my readers a happy and prosperous New Year, filled with love, hope and blessings.

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I'm Taking Many Small Steps Towards Tomorrow

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“It is better to take many small steps in the right direction than to make a great leap forward only to stumble backward.”

~ Old Chinese Proverb quotes

Today is Fulfillment Friday, my favorite day of the week. As the quote above suggests, today is about counting all the small steps I made this week toward my targets and goals. How did those Chinese ancestors know that, when you have chronic illness like I do, trying to get a lot done leads to flare-ups and setbacks? Maybe they are the ones I should credit with writing the Golden Rule of Chronic Illness: If I push, I will pay. If I pace, I can play.

Here are all the small steps I was able to take this past week:

1. Sent my activity and heart rate logs to Meg at The Workwell Foundation. Next step is to set up my follow-up consultation with her to discuss what reasonable and appropriate exercise looks like for me. You can look forward to a more detailed post about The Workwell Foundation and their philosophy for helping persons living with Fibromyalgia and Chronic Fatigue Syndrome next week.
2. Met with my neurologist and discussed trying Savella for my fibromyalgia. I'm nervous about side-effects, but I think I am going to give it a try. Look for a post about starting Savella in the coming week or so ... I need to schedule some downtime (i.e., no appointment or commitments outside the home) before I get started.
   
3. My self-help skills paid off when, on Wednesday, I was able to recognize the signs that I was overdoing it and headed for a flare-up. I took action by scheduling extra rest and rescheduling my plans for Friday.
4. I pondered some more about the art of self-discipline and made the connection that employing self-help techniques to manage my fibromyalgia and chronic fatigue symptoms is all about applying self-discipline to my life.
5. I recognized that the weekends are disrupting my routine. I am also wondering if this contributed to the fibro-fog I experienced earlier in the week. My next step: observe what happens this weekend, look for a pattern and explore what I can do minimize the impact of going off schedule during the weekend.
   
6. Discovered that I am mentioned at the web site of the Worldwide Association for ME/CFS Awareness and Research under Resources: ME/CFS Bloggers. Cool!
   
7. Wrote a post to my blog every day.
   
8. My blog post Tomorrow I See a New Doctor was featured in the Grand Rounds Blog Carnival at InvisibleIllnessWeek.com.
9. I applied to be part of another blog carnival for this upcoming week. It will be published on Monday, August 24, so stay tuned (finger-crossed.)
   
10. I also networked with the Blood Cancer Examiner and learned about freelance writing positions at the Examiner.com web site. I applied to become a Los Angeles examiner, although after the tips I received from Cathy, I think I may be reapplying.

I think my mantra for tomorrow and the next week will be, "Small steps, small steps."

Setting My Priorities for Another Week of Tomorrows

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Feeling energized from Fulfillment Friday, I am ready to face the challenge of another week. It's time to stop and think about the important things I want to get done this week. It's time to set some goals and targets.

As I discussed earlier in the week, I made the concept of a list of six daily priorities into the more fibro-friendly list a six weekly priorities. I felt so discouraged when I was faced with the prospect on Monday of having to admit I couldn't get everything done on the daily to do list I posted on my blog the day before. So I took as step back and on my day of pausing realized that I was being too hard on myself. Then I remembered the structure of the continuation group I participated in from the CFIDS & Fibromyalgia Self Help group: we only posted targets once a week! It clicked that a daily to do list at this point in my life is too ambitious. A daily to do list sets me up for failure. So I learned and remembered and, refocused on success, I adjusted accordingly.

Being chronically ill means I need to be flexible and understanding of my limits. It means living with the unexpected, being O.K. with a sudden change in plans and learning to go with the flow. My best laid plans often go unexecuted, especially when I have a flare-up in my symptoms. Type A personality traits and chronic illness don't work.

I'm learning the lessons of patience and delayed gratification. After all, if I can't be patient with myself, how can I expect anyone else to be patient with me?

So here I go:

1. Submit a writer's resume, cover letter and writing clips for the ChronicBabe "fibro writer" opportunity.
2. Submit my logs detailing activity, heart rate and perceived exertion to Meg at the Workwell Foundation via email.
3. Think more about my motivation to keep my home clean and complete chores around the house with this quote in mind:

   "Self-discipline is remembering what you REALLY want. When you can consistently remind yourself in loving ways what you REALLY want, you will fulfill your dreams." ~ The FlyLady

4. Incorporate more rest into my daily routine.
5. Continue to catch up on my emails from the CFIDS & Fibromyalgia Self Help group.
6. Spend time each day writing a blog post on the August theme of tomorrow.

I'm ready now with my goals and targets for another week. Hoping for one part good luck and taking control with three parts good self-maintenance (my coping strategies, my lifestyle adjustments and my willingness to experiment with different self-help approaches) I am ready for tomorrow.

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Tomorrow is Fulfillment Friday!

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I started Fulfillment Fridays back in May to focus on my accomplishments and relish what I have done. Fulfillment Fridays got lost when I blogged about heroes in June and routine in July.

After my post Tomorrow I Will See What Has Been Done, I felt discouraged about not being able to complete a list of six priorities every day. After my day of pondering (Tomorrow I Am Going to Pause) I realized that setting six priorities every day doesn't work for me right now. What does work is setting six weekly priorities and going back to celebrating my accomplishments on Fulfillment Friday.

If I stick to this plan, I build accountability into the process of setting of my six weekly priorities through the final step of stopping, reviewing, taking stock and reporting back each Friday. Plus I now have some additional motivation, because I want to be able to share with you what I can do in a week. Blogging about Fulfillment Friday holds me accountable.

Can you tell I am at heart an extrovert and a people person? This is why I previously chose social work as a profession: I felt inspired, challenged and rewarded working with people. This has been the hardest thing for me about living with chronic illness; the amount of time I now spend alone and the difficulties I experience being social, like sensory overload, increased physical and cognitive symptoms and exacerbation of fatigue. I miss my social life...

I look forward to the return of Fulfillment Fridays tomorrow.

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Tomorrow I Will See What Has Been Done

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I never see what has been done; I only see what remains to be done. ~The Buddha

I identify with this quote just a little too much and I think this is a problem. Living with chronic illness, it seems like there is so much I haven't done. I feel frustrated when I see all the undone projects that surround me in my home.

I used to be a type A person before chronic illness---I was a woman on a mission and I got things done. Now, well, it takes so long most of the time to get the simplest things checked off my "to do" list that I've seriously considered giving up on a "to do" list ... almost. Right now I am just not looking at it that often to avoid feeling despair.

Yesterday I set a goal of six things to do. As I write this post, I have accomplished three. I swapped a fourth item with doing some laundry when I realized I was running low on clean clothes. That's allowed, right? If that counts, then I accomplished four things today.

But instead of celebrating my accomplishments, I am embarrassed by my shortcomings. I think that you, my reader, will judge me negatively for my failure to complete six simple things. Really, though, it is my inner critic that is comparing my current self with my past self. Intellectually, I know that this is not a fair comparison. I am a very different person today than I was just 5 years ago. I don't compare favorable with how I was 5 years ago and the healthiest thing for me to do is just let this go.

So, tomorrow, I will celebrate what I am able to do and what I am able to get done.

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

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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

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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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What have I learned so far about minimizing my symptoms? - Part 2

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Today is a better day. Taking a break and resting after my over-the-limit activity on Wednesday once again worked. I cut the impending flare-up off and I am back to my routine energy limit of 2 to 4 hours once again.

So I didn't really get to fully answer the question: What have I learned so far about minimizing these symptoms? There is definitely more to the answer than I was able to articulate the other day.

Really the key to minimizing my symptoms is My Personal Rules. Here is my first draft:

• Resting when needed
  
• Sleeping as well as possible at night
  
• Taking medications (over-the-counter and prescription) as needed
• Being aware of how much energy I have each day and scheduling my activities accordingly: pacing, planning, saying no, rescheduling as needed
  
• Doing something fun every day
• Making activities "fibro-friendly", i.e. gardening becomes fibro-friendly container gardening
  
• Following the Golden Guideline: Pace = Play, Push = Pay
  
• Limiting social activities outside the home to no more than once a week
  
• Making my home a quiet sanctuary
  
• Seeking help from others when needed
• Finding a balance between treating my chronic health problems and living my life
• Learning to live my best life despite chronic illness
  
• Being open to trying new things to treat my health problems
• Setting up trial periods to evaluate if something is working and stopping if I am not getting any benefits
  
• Making a "NOT TO DO" list and delegating tasks I really have no business doing in my condition
• When a flare-up begins, cancel plans, limit activities and increase rest until the increased symptoms dissipate
  

This list is a work in progress and I promise by the end of July will have a complete list of My Personal Rules and a completed "Not To Do" list.

Getting Down to the Business of Creating a Routine

Time for me to get down to business and start creating my personalized routine. I think a good place to start is by answering the questions Joan Buchman posed in her article How I Use Routine to Successfully Manage Fibromyalgia. So here I go:

1. What are my present pain and fatigue levels?

For the answer, I begin by referring to the CFS/Fibromyalgia Rating Scale courtesy of the CFIDS & Fibromyalgia Self Help website.



It's been a while since I looked at this scale and last time I rated my self at 30. Today I would say that I am a 35 on average, and range between a 25 and a 40. What that means is that my pain and fatigue symptoms are moderate to severe, I can leave the house several times a week and I can do between 2 and 4 hours a day of activities like household chores, container gardening, pet care, driving, shopping with the help of my husband, cooking, arts and crafts, socializing, talking on the phone and using the computer. That doesn't mean I can do any activity for 2 to 4 hours straight! Depending on the activity, I can do about 15 to 30 minutes of an activity before I need to stop and rest for anywhere from 15 minutes to 2 hours. Using this approach, I can be active up to 2 to 4 hours a day.

Right now, the symptom I notice first when I check in with myself during the day is fatigue. Being in pain all the time is very tiring, which probably accounts for my need to sleep at least 8 hours and preferably 9 to 10 hours a night. With all my sleep-related problems, the quantity and quality of my sleep directly impacts my fatigue level, although I believe that the fatigue would still exist even if all the sleep problems miraculously went away. I also need to be careful about how much physical activity I engage in, especially aerobic exercise like walking, as my body responds to exercise by increasing my fatigue level for 12 to 36 hours afterward. This phenomenon is called post-exertional fatigue. So you see, fatigue limits how much I can do during the day and determines what I can do and how much time I need to rest.

As for pain, it takes many forms during the day, from significant numbness and tingling in my arms, hands and the sides of my legs in the morning to achy and sore muscles throughout my body by the end of the day. Something as trivial as my puppy jumping up and touching the side of my leg can intensify my pain, cause me to yelp and and push him away. Using any part of my body in a different way or for too long results in increased pain symptoms. Changes in the weather can make my pain worse. I've been in pain for so long now, approaching five years this October 2009, that I honestly do not remember what it feels like to be pain-free.

So this is where I am right now in terms of my pain and fatigue symptoms. Tomorrow I answer the question: What have I learned so far about minimizing these symptoms?

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 ...

July 2009: Can I establish a routine in 31 days?

The NaBloPoMo blogging theme for July is ROUTINE. I'm going to be honest and tell you that I wasn't really planning to blog every day in July until I saw this theme. See, now that I am disabled and spend most of my days at home, I am keenly aware that I have a profound lack of routine in my life. At least I THINK I do ... it may be a case of not realizing I have a new routine because I keep comparing my life now with my life pre-disability and, well, the differences are striking.

Pre-disability, I worked full-time and let my job be the cornerstone building block of my routine. Basically everything else that wasn't work or work-related was labeled "free time" and I could do whatever I wanted with my free time. So when I became disabled, suddenly I was living free time 24/7/365, minus my previous ability to do whatever I wanted, whenever I wanted, for how long and how much I wanted to do it. I now have a glut of free time and a limited physical and mental capability to take advantage of it!

Recently in the CFIDS/FM Self Help group I identified a new goal for myself and some strategies to achieve it:

I believe that the goal that corresponds to where I am at right now is the goal of Creating a New Life. As I reviewed the materials from the Self Help 2 course, certain options under several of the chapters sort of jumped out at me. I think these represent the tasks that have been more difficult, more troublesome and more challenging for me to master as I have shifted my focus from devoting so much time to "treating" my FM/CFIDS to learning how to "live my best life" with FM/CFIDS. These options are:

1) Exercise
I definitely have some form of post-exertional fatigue related to my dysautonomia. Despite multiple attempts at trying to find exercise that works for me, I had not been successful at creating a regular exercise routine. I need to complete my assessment and consultation with the Workwell Foundation to *hopefully* complete this option.

2) Organize and De-Clutter
My home is a mess and I need to organize and remove the clutter. It is both psychologically (looking at it) and physically (i.e. trying to find something) draining.

3) Create a Routine
I think that my life would be easier if I tried living a predictable life with routines instead of always "winging it". I have never been much of a routine kind of girl---having a job used to be what created the routine in my life. I need to start looking a creating a daily, weekly and monthly routine/schedule. This is definitely a huge challenge for me...

4) Shorten Activity Periods
I need to refine how active I am by:

• inserting more breaks into work periods
• breaking activities into smaller pieces and doing one piece per day throughout the week, rather than trying to do it all in one or two days
• using a timer and stopping when time is up

5) Take Pre-Emptive Rests
I have not mastered taking planned rests on a regular basis . I can lie down with my eyes closed in a quiet place, I just have never gotten to a point where this has become a habit or part of my routine. I want to routinely set aside one or more periods for rest every day.

6) Practice Gratitude
I want to develop the habit of journaling every day (just 5 lines in a 5 year diary) my favorite moments from the day so I can focus on the positive things that are happening in my life.

7) Personal Rules
I do have personal rules that protect me from doing too much. I need to take the next step and write out my rules and share them with my family and friends.

See how any times I mention routine? It's obviously something I've already identified as needing my time, attention and focus. It must be kismet that July is ROUTINE month; is it a sign that it must be time for me to develop my new routine?

So on July 31, 2009 I'll be answering the question: Can I establish a routine in 31 days?