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Friday, July 31, 2009

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

Fibromyalgia AwarenessImage 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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Thursday, July 30, 2009

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

tools of the tradeImage 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
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Image: I'm not lazy ... I'm pacing myself.

Here is the Post-It note that inspired my blog post from Tuesday: My Routine: I'm Not Lazy, I'm Just Pacing Myself.




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Video: My Cat and Dog Playing

Here is a video of my dog Theodor and my cat Ra "playing." It is the funniest thing! The video quality isn't great ... I took it with my Blackberry smartphone. I'll try again if I can catch them playing again.

video


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Wednesday, July 29, 2009

My Routine: I Just Want to Have Fun!

Girls Just Want to Have Fun (film)Image via Wikipedia

I became a young adult in the 80's and fell in love with 80's music. I remember going to dance clubs in Hollywood when I was an undergraduate in college and dancing the night away ... and I know they played the 1983 Cyndi Lauper song Girls Just Want to Have Fun.

My days of clubbing in Hollywood are long gone, but my pursuit of fun remains. In fact, fun is one of the most important tools in my bag of tricks for dealing with my life with chronic illness. Where pills, patches, injections and procedures have failed to bring relief, fun is an escape to somewhere better, where the focus temporarily shifts away from my chronic pain and fatigue. Fun is a great distraction.

Distraction is my number one coping mechanism. Fibro-friendly activities like reading a book, watching a movie on TV, listening to music, writing a blog post, gardening in my container garden, spending time with my pets and arts and crafts projects redirect my focus onto something other than the symptoms of my illnesses. Fun is a respite, fun is rejuvenating, fun feels good. Fun is a reminder that there are other things going on, both internally and externally, besides my fibromyalgia, dysautonomia and chronic fatigue.

I believe that my pursuit of fun, despite my chronic illness, is what keeps me from feeling discouraged, defeated and dismal. Being in pain and fatigue every waking moment can really wear you down; fun brings me back up. On the surface, it may seem impossible to have fun when you constantly don't feel good. Quite the contrary, I've found that fun is exactly the prescription that has worked for me, that has helped me feel good about life once again and that has built my strength to cope with the unpleasant aspects of my illnesses.

I've learned that all pain and fatigue and no fun makes me a very unhappy person. Since I've accepted the reality that my chronic illness is continuing on indefinitely, unhappy is NOT how I want to live the rest of my life. So this Chronic Babe will continue to build a list of fibro-friendly activities to do for fun, 'cause Chronic Babes just want to have fun, too!




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Tuesday, July 28, 2009

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

Turtle F2FImage 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.

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Thank You Terri---She Donated on Charity Tuesday!

THANK YOU Terri!

She donated to the Gerald E. Keerbs Memorial Fund benefiting the Alzheimer's Association.

Did you know that Tuesdays on Twitter are called #charitytuesday? It's a little nudge to remind everyone that there are non-profit organizations everywhere that need our help, day in and day out. So don't wait ... donate to your favorite charity today!

No favorite charity?

Then

Twitter Bird With Music NotesImage by Salon de Maria via Flickr

please consider a $1, $5 or $10 microdonation to one of my favorite charities, the Alzheimer's Association. Every dollar you donate to the Alzheimer's Association goes directly to helping people living with Alzheimer's disease or to researchers searching for better treatments and, one day, a cure. To visit the Gerald E. Keerbs Memorial Fund, benefiting the Alzheimer's Association, please click here.


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Monday, July 27, 2009

My Routine: Working Out In the Shower

ShowerheadImage via Wikipedia
I remember a time, five years ago, when I used to roll out of bed in the morning and right into the shower without giving it a second thought. Then again, I used to do a lot of things five years ago without giving them a second thought. The point is that today, chronic illness makes me stop and reevaluate everything I do or want to do in terms of how much energy the activity requires and how much energy I have to expend.
I've discovered that one of the places that takes a lot of my energy is the bathroom.
One of the great things I learned through my participation in the Cedars Sinai Chronic Pain and Fibromyalgia Program was the art of making activities "fibro-friendly." I can tell you with certainty that the bathroom is not a fibro-friendly place. The culprit is the standing involved in most bathroom activities.
So one of the first things I changed was how I take a shower, or rather, the position in which I shower: sitting. For years now I have been taking my showers seated on a shower bench. When I get out of the shower, I sit down to dry off. Drying my hair with a blow dryer is a thing of the past too; by necessity my hairstyle has been wash and air dry for years now. Time in front of the sink brushing my teeth or washing my face has been modified by resting one foot on a stool while standing. Putting on makeup, the standing in front of the mirror and the use of my hands in holding the various tools of the task, is now limited to special occassions only; it is too painful a task to do on a daily basis.
Wow! Did I just call putting on makeup a task? How things have changed for me in 5 years...
The bottom line is taking a shower is a real workout now. In addition to modifying how I take a shower, I also follow these 3 rules: I only take a shower at night, I only take warm water showers and I only take a shower every other day. For
Batiste Dry ShampooImage by BitchBuzz via Flickr
reasons I don't fully understand, if I take a shower in the morning I am left with no energy for the rest of the day. If I take my shower at night, I have just enough energy afterwards to get myself to bed, which works out much better. Hot showers leave me too exhausted and almost unable to move, so I take showers with only warm or tepid water. While I would prefer to shower every day, much like working out at the gym for healthy people, showering is best done every other day for me to avoid flare-ups of pain, fatigue and soreness. Thankfully I have discovered Batiste Dry Shampoo which helps my hair look fresh between showers.
Life with chronic illness is complicated, but at least I manage to stay clean while living it!
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Sunday, July 26, 2009

My Routine: Starting With a Clean Slate

Awake Is the New Sleep album coverImage via Wikipedia

Today my post is just a quick note to let you all know I am still doing O.K. after my hard reset of my sleep routine. Three nights have passed and I'm getting to bed and asleep when it is dark. This is probably not unusual for most of you, but for a delayed phase sleep disordered person like me this is a BIG change and accomplishment .

So this puts a twist on my routine. All the activities that I did in the wee hours of the morning need to be shifted into the newly available time slots of my newly more humanized schedule. So I need to

Sunshine and flowersImage by kuddlyteddybear2004 via Flickr

literally go back to the clean slate and reconstruct the ebb and flow of my day. I have my work cut out for me. It's a brave new world full of sunshine.

I am also struck once again by how the NaBloPoMo July theme of routine seems to perfectly fit with what I am doing right now. I am embracing the challenge of routine and making changes in my life! Looks like I WILL have a new routine by July 31st.



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Saturday, July 25, 2009

My Routine: Hitting the Reset Button on Sleep

Awake Is the New Sleep album coverImage via Wikipedia

So it's 8 am on Thursday morning and I still haven't fallen asleep. Which is not as atypical for me as it might be for you. I am thinking about my delayed phase sleep disorder and how trying to go to bed a half an hour early over a series of days and weeks just doesn't seem like it is working. So I decide to take the drastic approach.

I didn't go to bed.

I basically stayed awake for 33 hours straight.

I never pulled all nighters in college; I just couldn't hack it. Remember, back in college, prior to chronic illness, I had a double major---kinesiology and sleep! O.K., I'm just kidding ... or not.

I did surpri

JetlagImage by Articulate Matter via Flickr

singly well. I kind of "hit the wall" around 7 PM on Thursday and felt not so good. I craved sleep when bedtime arrived and I jumped into bed right away. Amazingly, I fell asleep rather easily. I woke up a few times---1am, 2am and 3am---but then settled in a longer stretch of sleep. I awoke when my alarm went off at 9:30 am, in time to take the dogs to the groomers for their 10 am appointment.

I am
azed my husband and friend Cyndie with my radical approach to resetting my circadian clock. They both commented at dinner tonight that they were surprised it worked after just one day. To be honest, I'm a little surprised too, but also grateful. It will be nice to get back on a more human schedule instead of keeping vampire hours.

Now if only I didn't need to sleep 9 to 10 hours a night...

DISCLAIMER: If you think you have delayed phase sleep disorder, you need to talk to your doctor about personalized strategies to deal with your particular situation. I am not a medical professional.



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Friday, July 24, 2009

My Routine: Trying to Get a Good Night's Sleep

Awake Is the New Sleep album coverImage via Wikipedia


To die, to sleep;
To sleep: perchance to dream:
ay, there's the rub...

~from Hamlet by William Shakespeare


I used to love to sleep, put my head on my pillow each night, drift off to dreamland and enjoy a restful slumber. I loved sleeping in on the weekends. I had no problems going to sleep and getting a good 8 hours in every night. Insomnia was a rare occurrence. Dreams were my refuge from the world...

Not any more.

Chronic illness changed my life in so many ways, and one surprise was the development of not just one, but multiple sleep disorders! Now I have problems falling asleep, staying asleep and being a light sleeper. I have gone from needing 8 hours of sleep to 9 to 10 hours a night. I was finally sent for a sleep stu

insomniaImage by babblingdweeb via Flickr

dy in 2006 and was diagnosed with sleep apnea and problems getting enough deep, stage 4, sleep. I also have something called delayed phase sleep disorder, where my body clock is set incorrectly for time zone I am living in: check out the widget in my blog sidebar to the right and you can see what I mean.

I treat the sleep apnea by using a CPAP machine. The CPAP fixed the sleep apnea, but the other sleep problems persisted. When I was diagnosed with dysautonomia and started treating it with a beta blocker in 2007, my pounding heart stopped waking me up in the middle of the night. But I still had problems so I was prescribed a medication to help me get more deep sleep.

My current sleep doctor

A typical CPAP machine houses the air pump in ...Image via Wikipedia

has suggested a few other medications to try too. He also recommended trying gradually going to bed 30 minutes early each night over a period of time to get back into a schedule that fits the Pacific Time Zone. He also mentioned that some people just stay up 24+ hours and reset their clock by not going to sleep one day and waiting for the next night to go to be at a more appropriate time.

So guess what I did Thursday?

You'll find the answer in my next post...




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Thursday, July 23, 2009

My Routine: Take a Deep Breath and Relax

RelaxImage by Roslan Tangah (aka Rasso) via Flickr



Today has been one strange day. I am just too tired to go into the details right now ... suffice it to say I am ready to go to bed, sleep and start again tomorrow. During the day, when I hit some rough patches, I remembered to stop and just breath. Here is a 4 1/2 minute long Breathing Relaxation Exercise video to help you remember to take a deep breath and relax too. Enjoy!










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Wednesday, July 22, 2009

My Routine: Spending Time in the Garden

Colorful Shovels - DSC01673Image by yuankuei via Flickr

Selena, Selena, so fibro-friendly,
How does y
our garden grow?
With radish, pepp
er, tomato
And green bean all in a row.

One of the good things to come out of the six weeks I spent at the Cedars-Sinai Chronic Pain and Fibromyalgia Program in 2007 is my container garden. I was challenged to turn my interest in gardening into a fibro-friendly activity and gardening in containers fit the bill. I can tend my garden from a seated position, with minimum reaching, lifting, digging or bending. I have also outfitted my containers with a soaker hose system; I purchased the parts for the system I created on eBay (a fibro-friendly way to shop.) My watering set-up is automated, attached to a DIG Irrigation Products battery operated hose water controller which is programmable for multiple days of the week and watering duration.

Unfortunately, my gardening routine se
ems to get a late start each year; seeds that can be started between April and June inevitably are planted in June. It seems that Spring is often a time for flare-ups, infections and calamities---last year I broke my foot in March, this year I caught the flu and developed a persistent sinus infection starting at the end of April and lasting a whole month. So if I were to change one or two things with my garden routine, it would be to figure out a way to better survive Spring physically so I can start planting earlier.

My Lightweight Barrel Containers
-Established in 2007, My First Year of Container Gardening


(click on any picture to enlarge)



The BIG Container from Naturalyards
-circa 2008 and Built to Last 30 Years!

(click on any picture to enlarge)




My garden wish list includes another large container from Naturalyards. I was able to order an exact size that perfectly fit the space I designated for the container. This container was wonderfully easy to put together---tool free and like stacking Legos. Robert helped me put my Naturalyards container together in about 1/2 hour and it will last for a long, long time thanks to the Port Orford cedar used in its construction. I highly recommend Naturalyards: their customer service was excellent and shipping via FedEx is included in the price of the container.

A hummingbird and his flowers.

Surprisingly, time in the garden has turned me into somewhat of a novice bird watcher as well. Among the birds I have seen: the black Phoebe, the wrentit, the red-winged blackbird, the red-tailed hawk, Anna's hummingbird, Stellar's Jay, the lesser goldfinch and our local flock of green parrots.

As you can tell from my impassioned description, I wholly enjoy my garden routine.



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Thank You Ann-Blair for Donating to the Gerald E. Keerbs Memorial Fund!

Thank YouImage by jaredchapman via Flickr

THANK YOU Ann-Blair!

She donated to the Gerald E. Keerbs Memorial Fund benefiting the Alzheimer's Association.

Who's next?

$1, $5, $10 or more: please consider a microdonation, because every dollar you donate to the Alzheimer's Association goes directly to helping people living with Alzheimer's disease or to researchers searching for better treatments and, one day, a cure.

To visit the Gerald E. Keerbs Memorial Fund, please click here.


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Tuesday, July 21, 2009

My Routine: Working on Letting Go of Some Old Routines

Survivor GuiltImage 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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