What Works For Me: Six Things "To Do" Every Day

Image by @superamit via Flickr
Back in August 2009, I wrote a whole month of posts around the theme of tomorrow. For some reason, in my mind I associated "To Do" lists and achieving goals with the theme of tomorrow. Reviewing a few of those posts today, I can see how ambitious I was in trying to plan for tomorrow and report back progress on my goals here on my blog.

I think the biggest lesson I learned that month is that the uncertainties and fluctuations in my disability and chronic illnesses make it really hard to have a "To Do" list.

"To Do" Lists Don't Work

Sure I can write up a whole list of what I want to accomplish. I could probably fill pages and pages of a word processing document with all the things I want to do. After all, I'm not working so I have the time, right? Well, lesson learned, I might have the time, but I definitely lack the energy to get all these things done.

My ability to get things done is dictated by how much energy I have on a given day. Since my energy level is, on average, only 30% of what an average healthy person has, I'm not getting a lot of things done each day before I'm all tapped out.

Even simple, every day tasks are taking 2 to 10 times longer to do.

A Reminder List Works Better

I realized that having a "To Do" list contributed to feeling worse, not better, about myself and my situation. In that moment, inspiration struck and I got an idea to use a "To Do" list in a different way. Rather than focus on tasks and goals, I decided to use my list to focus on six coping strategies to use each day. Here is my original list:

*My 6 Most Important Things To Accomplish Each Day*

1. Rest: 15-20 minutes, at least 1 to 2 times a day.
2. Stay Inside My Energy Envelope: by pacing, planning, resting, checking in, delegating and saying "no."
3. Work in 15 minute intervals: Use a timer and take breaks.
4. Exercise: move my body any way I can for a total of 10 to 15 minutes a day.
5. Journal: write down what I want to be, my mantra for the day and my favorite moment of each day.
6. Have fun every day: for at least 15 minutes each day.
   

I'll be honest. I still am working on making these six strategies part of my daily routine since I wrote this list over 15 months ago. Even though this list is a work in progress, it helps me feel good about myself and my coping abilities because every day I can check off at least one thing from my list that I was able to do.

Q. What is my favorite and most accomplished list item?
A. Have fun every day!

What would you put on your own Six Things "To Do" Every Day list? Share your answer in a comment.

All Flared Up, But Feeling Fine

Image via WikipediaLet me get right to the point here. You read the title of this post and ask yourself (among other things), "How can she feel fine if she is all flared up?"

For starters, let me say that under normal circumstances, I do not experience regular, moderate to severe flares of my fibromyalgia symptoms. Why? Because I have learned to stay in my energy envelope. It took me five years to learn how to do this, but I know I have mastery of this concept now. How do I know? Because I went WAY out of my energy envelope several days last week and got severely flared up.

So while physically I don't feel so great, psychologically I feel O.K. because I have proof that the things I usually do on a daily basis to manage my fibromyalgia symptoms really work. I also feel good because I know if I can get back to this routine during and after my flare-up, I can prevent this from happening again.

So, do you want to know some of my secrets?

1. Using an assessment scale, I determine my level of functioning. So right now, I am about a 20 out of 100, so I need to scale back the amount of activity that worsens my pain and fatigue to around 1 hour per day.
2. I acknowledge that feeling good is dangerous and can lead to me overestimating my ability to engage in activities. So I remind myself of the Golden Rule of Chronic Illness:If I push, I will pay, If I pace, I can play.
3. Next I plan out my activities for the day using the 15 Minute Rule. I schedule 15 minutes of an activity, then I stop to assess. If I feel more pain or fatigue, I stop and rest for 15 minutes. If I feel OK, I continue on for another 15 minutes. Wearing a timer around my neck helps me stick to my schedule.
4. I recognize that I need to modify how I do things to make activities more fibro-friendly. Among other strategies, I sit down while doing activities and use aids like a Pik Stik reacher or the shopping scooter at the grocery store.
5. I know what times of day are best for certain activities and I plan accordingly, sticking to a daily routine. For example, my hands often are numb and painful when I get out of bed, so I avoid using my hands a lot for several hours following awakening.
   

It is the knowledge that I have broken the push-crash cycle and can manage my fibromyalgia symptoms well enough to avoid major flare-ups that helps me feel fine despite more pain and fatigue right now.

Tomorrow I'll write more about how I got into my current predicament and the lessons I learned over the past week.

Embracing My Life as a "Fibromyalgia Scientist"

There is so much about having fibromyalgia that I admit I have no control over.  Through the experience of living with fibromyalgia for the past five years, I know firsthand that there isn't a lot that medical professionals have to offer me in the way of treatment or cure for my illness.  Five years of living with fibromyalgia taught me that the best approach to managing my fibromyalgia symptoms was learning how to become a fibromyalgia scientist.

In many ways I feel better knowing that the answer to managing my symptoms is in my hands.  It was difficult to be constantly disappointed when medical interventions fail to bring any relief.  It was also hard on me physically to attend numerous medical appointments every week. The self-help approach of the fibromyalgia scientist allows me to problem solve at home, at my own pace, using online resources and the support of peers living with fibromyalgia like me.  Incorporating the advice and guidance of my healthcare providers is still an important part of my over all fibromyalgia management.  However, as a fibromyalgia scientist, I focus on reporting my successes in managing my symptoms when I go to my doctor appointments rather than just listing all my troublesome symptoms hoping that the doctor has something to offer me.

As I mentioned in my post How to Become a Fibromyalgia Scientist, perhaps the idea of being a fibromyalgia scientist appeals to me so much because I found myself drawn to the study of science in high school and college.  While in school, I became familiar with the scientific method of identifying a problem, creating a hypothesis about the cause of the problem and then setting out to discover if that hypothesis was correct.  Today I use that same method to identify a symptom that needs better management, list possible factors contributing to the worsening of the symptom, brainstorm ideas for how to combat these factors and then implement these ideas one at a time to see if they make a difference.


For example, let's take my symptom of chronic and persistent fatigue.  I began by observing when my fatigue worsened by logging my daily activities over a period of several weeks.  It became clear from my logs that there was a limit to how much I could do in a day and anything over that limit worsened my fatigue 12 to 72 hours afterwards.  Then came some brainstorming about strategies I could use that respected my limits and allowed me to accomplish tasks and enjoy some leisure time.  Strategies like: breaking bigger tasks down into smaller pieces and completing them over several days, limiting myself to 15 minutes of activity followed by a break (my 15 Minute Rule), modifying activities so that they could be completed in an energy saving seated position and delegating or asking for help with tasks that were too difficult for me to complete on my own.  With ideas written down in the list, I then began implementing them to see which ones worked and which ones did not.


I was fortunate to be referred to the Chronic Pain and Fibromyalgia Program at the Cedars-Sinai Medical Center in 2006.  Their program, consisting of instruction from professionals in the physical therapy, occupational therapy and psychology fields, got me started thinking like a fibromyalgia scientist.  My first accomplishment as a fibromyalgia scientist consisted of creating a container vegetable garden, which took my love of gardening and transformed it into a fibro-friendly, seated activity. But it was in the monthly alumni group that followed this six week program that I heard about the CFIDS and Fibromyalgia Self Help online program that really helped me evolve into a full-fledged fibromyalgia scientist.

I acknowledge that I will be a fibromyalgia scientist for as long as I have fibromyalgia.  The nature of fibromyalgia is that it is unpredictable; new symptoms can emerge, existing symptoms can worsen and factors out of my control, like the weather and catching a cold, can affect my symptoms both in the short term and the long run.  Viewing my symptoms as a puzzle to solve rather than an inconvenience to endure helps keep me focused on learning to cope with my fibromyalgia and living my best life despite it.

For all these reasons, I embrace being a fibromyalgia scientist.  

TIP:  Be proactive about your health care.  Ask your rheumatologist or chronic pain specialist for information about and a referral to any chronic pain rehabilitation program in your city.  If this resource is not available where you live, consider the online CFIDS and Fibromyalgia Self-Help program, which draws participants from around the world.  Use these resources to learn how to become a fibromyalgia scientist too. 

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My Routine: 31 Days Later, Do I Have a Routine?

Image by Kindreds Page via Flickr

There is a story I know a snippet of, about one of the founders of Hewlett-Packard. Either William Hewlett or David Packard was asked how to estimate how long a project would take to complete. He replied, " Take the time you think it will take and multiply it by three."

I've found that when you live with chronic illness as I do, the answer to that question is more like, "Take your estimate and multiply it by at least 10."

I don't know if I can say with confidence that I now have a routine, but I know that I am well on my way to developing one. I feel better about the concept, having aired out all my negative perceptions at the beginning of the month (Routine Defined, Or Why I Cringe When I Hear The Word). I then jumped into the task and found that I have some of the pieces already together (What have I learned so far about minimizing my symptoms? - Part 2).

I know that I need to keep it simple---simple is sufficient, expect the unexpected, live harmoniously with my chronically ill body and schedule days of rest. I've embraced my inner turtle and can be heard chanting the turtle motto: I'm not lazy, I'm just pacing myself! I even had an A-ha moment; aren't you proud of me, Oprah?

I'm going to end this month of blogging on the theme of routine by sharing with you my revised My Personal Rules and Not To Do lists. In the spirit of KISSIS, I am distilling each list into six easy to remember items.

My Personal Rules:

1. The Golden Rule of Chronic Illness: If I pace, I can play. If I push, I will pay.
2. Each day, keep a running tally of activity time. Using the CFS/Fibromyalgia Rating Scale, I know I can be active 2 to 4 hours a day
   
3. 15 minute rule: When active, stop every 15 minutes to check in. Stop if tired. Continue on for another 15 minutes if feeling OK. Then stop and repeat process.
4. Stay inside my energy envelope---through pacing, planning, resting, checking in and saying no.
   
5. Do something fun every day.
6. At the first sign of flare-up, rest, rest rest!

My "Not To Do" List

Do not:

1. Stand, when I can sit.
2. Walk more than a few minutes, when I can use a scooter (either my travel scooter or the one provided at the store.)
3. Shop alone; instead bring someone along to help me.
4. Shop in-person; instead, when possible, shop online.
5. Leave the house more than once a day (i.e. no more than one outing/appointment/engagement a day.)
6. Schedule more than 3 or 4 outings/appointments/engagements outside the house in a week.
   

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My Routine: Tools That Help Me Stay in the Energy Envelope

Image by oneblackbird via Flickr

I've mentioned in my posts on my routine this month of July 2009 some tools that help me conserve my energy and stay in my energy envelope.

Today I wanted to share with you some pictures of my favorite tools as well as a hand dandy carousel link to Amazon.com where you can purchase these tool (or ones just like them) for yourself.

TIMERS:

The best way to make sure I stick to the 15 minute rule is by using a timer. I have two favorites: a small, portable timer on a cord that I wear when I go outside to container garden and my stop sign design Time Tracker that gives me a sound and visual warning when my 15 minutes are coming up.



BENCHES, CHAIRS, SCOOTERS AND STOOLS:

The position that works best for me? Sitting. The next best thing: standing while resting one foot on a stool. Hence my collection of benches, chairs and stools: the bench I use while showering, the stool I rest my foot on next to the bathroom sink, the garden seat I made using a 5 gallon paint container, a contractor's seat and a gel kneeling cushion, the chair I sit on while my dogs do their thing outside and the travel scooter I use to walk my dogs and go shopping.




PERSONAL CARE:

I love Batiste Dry Shampoo. It makes it possible to wash my hair every other day, which keeps my "workouts in the shower" to a manageable number each week.




By the way, shopping online is a huge energy-saver for me personally. I discovered the $79 Amazon Prime membership that gives me two day shipping on all my purchases, regardless of amount, for an entire year. Plus at Amazon.com, there is no sale tax, which helps me save money and stay within my budget too.

Happy shopping!




Amazon Prime Membership

My Routine: I'm Not Lazy, I'm Just Pacing Myself

Image via Wikipedia

Some days, I am slower than a herd of turtles stampeding through peanut butter. ~Unknown

A friend of mine who I correspond with on Facebook recently posed a question to her friends: If you could have a super power, what would it be?

Remember Samantha Stevens from Bewitched? Remember how she used to think of something, twitch her nose and, presto, it would appear or happen? For lack of a better label, let's call this Think-Blink-Done! That's the super power I want!

See, the pace of my life with chronic illness is slow. I do not have any gears higher than 2nd---a stick-shift car reference. (By the way, I can no longer physically handle driving a manual transmission car any more.) What works for me is the 15 minute rule: I am active for 15 minutes and then I stop. Depending on the activity, I evaluate if I can go another 15 minutes and if the answer is yes, I proceed. If the answer is no, or the activity is too strenuous for more than 15 minutes, I rest. Throughout the day, each and every day, I pace myself 15 minutes at a time.

Another important part of pacing is to alternate activities. I rotate between physical, mental, social and passive endeavors. It is obvious that physical activities are both tiring and prone to exacerbating my chronic pain and chronic fatigue; what I learned is that using my mind, being with others in-person or even on the phone and passive pursuits like watching TV or reading a book can be just as tiring when you have limited energy to exert in a day. Keeping a balance between the types of undertakings I engage in during the day helps me not overdo it. If I expend my energy wisely, I find I can stretch it across the day and into the evening and engage in the things I want and need to do.

Both of these strategies keep me in the Energy Envelope, that is, only expending the energy I have. It's all part of the Golden Rule of Chronic Illness:

If I pace, I can play. If I push, I will pay.

I want to play, so I have learned to accept my life at a turtle's speed. I embrace my inner turtle! The turtle motto is: I'm not lazy, I'm just pacing myself.