Mission 2011: Mapping Your Energy Boundaries

Image by tray via Flickr
So last week I discussed doing a fibromyalgia time study to help you find your baseline level of functioning. This week I am wondering what you think of that form and how your time studies are coming along.

By the way, have you stopped and rewarded yourself for investing the time and energy into becoming a better fibromyalgia scientist/detective? After all, treating yourself to something special for all your small, baby steps helps maintain your motivation over the long haul.

This week I am providing you with another form that will help you pull everything together and map your energy boundaries. Take a look at the form I created below:



If you like what you see, you can download a copy of the form for your own personal use.

If you have your three days worth of time studies, completing this energy boundary map will be very easy. Just grab a calculator and add up the time you spent doing physical, mental and social activities. When you are done, you will have a clearer picture of how much energy you have on an average day and where you allocate that energy.

Then look at your comfort zones and your average pain and fatigue levels and decide if this is where you want to be.

If the answer is yes, then woohoo!

If the answer is maybe or no, it's time to take stock and consider making some changes. Using this form, you can identify the areas where you'll want to modify, simplify, ask for help, cut back and/or say no. You might also see the benefits of adding more rest or sleep to your schedule, tackling stressors, minimizing triggers for sensitivities, making more time for fun or talking to someone about your issues for advice and support.

This map of your energy boundaries lets you see the thin line that separates good days from bad days. If you can see the line, then you know when you are about to cross it and land into higher symptoms/lower functioning territory. Seeing the line will help you make better choices about how you are going to allocate your precious and limited energy each day.

Combined with the time study data, this completed form gives you specific, concrete information about your level of functioning that you can share with your health care team. Just think, at your next doctor's appointment you can say, "I am having problems doing (x,y or z). This activity increases my pain/fatigue. Is there anything we can do to address this, maybe with medication, lifestyle changes or physical/occupational therapy, so I can have some improvement in this area?"

Next week I'm wrapped up this month's topic by sharing some more ideas on how you can use forms and logs to do things like root out the cause of specific problems or track your response when you make changes to your routine, medications or lifestyle.

Related articles

• Mission 2011: Time to Find Your Baseline (ohmyachesandpains.info)
• Mission 2011: Mary Poppins and the Symptom Log (ohmyachesandpains.info)

Mission 2011: Time to Find Your Baseline

Image by emdot via FlickrWelcome back to another edition of Mission 2011.

February is all about becoming a better fibromyalgia detective or scientist through observation, notetaking and analysis. It sounds like some pretty brainy stuff, but I promise to make it simple and doable in my own signature fibro-friendly way!

Today I want to get you started discovering your baseline level of pain, fatigue and functioning. The premise behind this task is a pretty basic one: knowing your baseline helps you track improvement (or lack thereof) when you make changes to your routine, lifestyle and medical care.

So what is the best tool to use to figure out your baseline? I think it is a time study, which is a proven business tool used to figure out where an employee's time and effort are expended on a daily basis. After all, living with fibromyalgia is like having a 24/7/365 job that's all about taking care of yourself.

Let me introduce my Fibromyalgia Time Study Worksheet I created just for you and have inserted below. I've modified it to track things like your activities, pain and fatigue levels and body position. Page two has lots of helpful advice on how to complete the form and interpret the data you collect.

Let me also add these suggestions:

• Aim for three days worth of logs to get yourself started. Complete these logs over the span of a week or two, depending on your schedule and available time.
  
• Choose to gather data on days that are the most typical of your current lifestyle.
  
• Try to record your activities every half hour you are awake; setting an alarm on a watch, clock or kitchen timer can keep you on track all day long.
  

(Like what you see? Click here to download or print this form.)

So what are you going to do with the data from three days of logs?

Next week, I am going to help you map out the boundaries of your energy envelope using the information you gather. After all, you can't stay in your envelope and be flare-up free if you have no idea what your envelope looks like.

Related articles

• Mission 2011: Mary Poppins and the Symptom Log (ohmyachesandpains.info)

Mission 2011: Getting Into My "Sweet Spot"

Image via Wikipedia

So last week I recorded a video blogging entry all about the energy envelope and how it helps prevent me from getting flared up. Funny thing is, in the process I think I uncovered my goal for 2011.

I'm in search of my "sweet spot."

Specifically, I want to live each day and have a little bit of energy left over to fill my empty reserves. Once they get full, I am hoping the extra stored energy transforms into healing power, even if it is only a very small 1/2 to 1% improvement per month.

I know that doesn't seem like a lot, but an increase from my current 30% to 36 - 42% by the end of the year sounds promising.

That said, I don't know with any certainty that this will work. I mean, the concept makes some sense to this fibromyalgia scientist. On paper (or my whiteboard) it looks good. But this still is an experiment and I'm trying this out to see what happens.

So it seems that 2011 will be the year of my grand leap of faith. And the good news is you can follow my progress or take the leap with me as I blog about implementing my actions steps, one each month, on Thursdays.

I've put some thought into my experiment's design and decided that I want to focus on 12 skills I have learned in the past and revisit their purpose, relearn the parts I have forgotten, revise my daily/weekly plan to make sure they are included and overall recommit myself to using them.

Here are the 12 skills I will focus on in 2011, one each month:

1. Making activities fibro-friendly by modifying how I physically approach tasks
2. Creating a bedtime routine and getting a good night's sleep
3. Finding the exercise program this is right for me
4. Making and sticking to a schedule of rest breaks throughout the day
5. Fine-tuning my skills in planning, with emphasis on special events
6. Practicing the 15 minute rule and alternating between different activities
7. Consistently using my mobility aids to conserve energy during errands
8. Charting my symptoms and tracking my improvement (or lack thereof)
9. Reassessing the boundaries of my energy envelope
10. Daily meditation and relaxation practice using my emWave
11. Tackling housework and turning my home into my sanctuary
12. Enjoying my container garden, i.e. my ongoing occupational therapy
    

I've already started focusing on number one above by observing my body mechanics and positions as I move through my day. I can't wait to fill you in on my discoveries next Thursday.

Until then, check out the links in my list to learn more about these 12 skills and then share which ones you'd like to get better at in 2011. Let's work together to get better at managing the symptoms of our chronic illnesses.

Related articles

• Question of the Week: What Are Your Goals for 2011? (ohmyachesandpains.info)
• Fibromyalgia Flare-up? Here's What To Do... (ohmyachesandpains.info)
• What Works For Me: Six Things "To Do" Every Day (ohmyachesandpains.info)

Video: Getting into the Energy Envelope to Prevent Flare-ups

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.

Question of the Week: How Resilient Are You?

Image via Wikipedia
My husband and I were fortunate enough to scrape together some funds for some sorely needed repairs around the house and backyard recently. Since Robert works, I needed to change my schedule to be available to the handyman when he came to get the work done. Doing this over the past few weeks got me asking myself: How resilient am I?

Unfortunately, I don't think I am as resilient as I want to be.

What kind of rubber band am I?

To use an analogy, think of a rubber band. Your typical rubber band spreads out in all kinds of directions, but when you stop pulling it, it returns to it's pre-stretch shape.

But have you ever stretched a rubber band that had a weak spot in it, like a nick or cut in the elastic? Or stretched an old, brittle rubber band? Then you know that they can't withstand a lot of strain and are liable to break when drawn out to their limit.

I hate to admit this, but my chronic pain and fatigue make me more like that old rubber band.

Being flexible with my schedule only served to prolong my "September fibromyalgia flare-up" that began the week before Labor Day. It proved that my regular daily routine really does keep me in my energy envelope and protects me from flare-ups.

Now that I am all stretched out, I know it's going to take some time to get back into my usual shape. But at least I didn't break!

So how can I stretch further?

A year ago a wrote about about opening an energy savings account. The concept of banking energy every day instead of using up every last drop available to me fueled the idea. Well that and an inspiring quote from Bruce Campbell, PhD. of the CFIDS & FM Self Help Program:

"The unexpended energy is a gift of healing you are giving to your body."

I think banking unexpended energy is the key to building resilience. Now I just have to figure out how to give this present to myself every day.


How resilient are you? What have you tried to build resiliency into your life with chronic illness? Share your thoughts in a comment or head over to the Oh My Aches and Pains! Facebook page to continue the discussion.

The Lessons Learned From My Latest Flare-Up

Image by Fuschia Foot via Flickr
I have some modicum of control over whether or not my fibromyalgia symptoms flare-up. Granted some things that flare me up, like the weather or catching a viral infection that leads to a flare, I have little or no control over. But in the spirit of focusing on the things I can change, I do have control over what I do day-in and day-out to stay inside my energy envelope.

My energy envelope

Living with fibromyalgia means I have a limited amount of energy every day. That limited amount of energy is my energy envelope. If I only expend the energy available to me, I stay inside my envelope. If I exceed my available energy, I step out of my envelope and into trouble. If I expend some energy and save the rest, I give my body the gift of healing.

The plan

Recently, I finally saved up enough money to be able to buy a fibro-friendly reclining sofa for my living room. I knew that I was going to have to get the room prepared for the new furniture. That meant getting the old sofa out, organizing the other furniture in the room and doing some much delayed (and avoided) Spring cleaning and decluttering.

So when I made my purchase, I schedule a delivery date for three weeks out so I could get these things done.

In the meantime, I rallied my husband to help me. Then I enlisted the help of an organizing professional. I let them both know we needed to get started early and work a little bit each week to accomplish my goal of getting the living room prepped and ready for new furniture. I explained that waiting to the last week to do everything wasn't going to work for me.

I felt confident that if I could stick to my plan, I could get everything accomplished and avoid a flare-up.

What happened

I was really depended on the organizational professional I hired to take my plan and run with it. Unfortunately, she had a family emergency and had to delay her participation.

She had a great plan of attack that included parking a small temporary storage container in our driveway so we could immediately clear out the living room and then repopulate the room at our leisure after the furniture arrived. It seems like a quick and painless solution, so my husband and I didn't worry too much when she couldn't come to help us until five days before the scheduled delivery.

After some confusion and mix-ups, we learned four days before the delivery that our driveway was too narrow for the forklift to deliver the container. On that same day, our organizer had to bow out once again because of family issues which she felt took precedence over her work commitments.

Robert and I quickly formulated Plan B. Subsequently, I wound up doing way too much in the final few days leading up to the furniture delivery.

The outcome

• I fired the organizer.
• I accepted that I was going to be stepping way out of my energy envelope and realized that I was going to be flared up as a result.
• I prepared myself mentally for the consequences of my choice.
• Now I am practicing patience as I wait to recover from my extreme trip outside my energy envelope.
• Until then, I am resting and recovering on my new reclining sofa.
• I acknowledge and applaud myself for tackling my first big project since living with fibromyalgia. Which means I've reached the point where I recognize that living my best life with chronic illness means figuring out to to face, not avoid, the big projects in my life.
• For my homework, I need to learn how to better plan for big projects--like formulating several plans of attack up front. I think if I can master the skill of planning, I can be more successful, and less flared up, next time.

So what do you think about the lessons I learned from getting flared up?

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.

He Wants Me Back...And So Do I

Image by nouQraz via Flickr

My fibromyalgia seems to be in flare-up mode this week. Every body part aches so much more and the tiredness seems to permeates all the way to my bone marrow. Both these symptoms shrank my energy envelope and my corresponding ability to get things done this week. Perhaps the culprit is Spring, with her temperature swings, occasional rain showers, blowing winds and pollen everywhere. Oh, and her lure of it finally being Spring gardening time that beckons me back in the garden and get me overdoing it.

But you what really let me know I was having a rough time? I snapped at Robert several times this past Tuesday and got into two different quarrels with him that day too. My even temper and good nature appeared to have left the building. It's like an alien slipped in and took over my body and now I'm the host for someone entirely different. Someone overcome by chronic pain and fatigue, lashing out, dazed and confused.

In return, Robert got mad at me and snapped back. Taken aback, my first thoughts went something like this: Apparently all the comments I made in the car on the way to our doctor's appointments Tuesday about how my pain and fatigue were so much worse didn't register with him. You'd think that after 5 years, he'd recognize that when I feel worse I have a shorter fuse.

Then I realize that's not the real issue here.

My hubby's life doesn't revolve around chronic illness, which means he had lots of other things on his mind. Given the state of our household, that he is the sole wage earner, I hope he never knows life with debilitating chronic illness. I need my husband to be healthy and fully functioning. He doesn't know what chronic illness feels like, so he simply doesn't understand how a flare-up can turn me into a totally different person. He just doesn't get it and that's O.K. with me.

I guess if I wanted a husband who could tune into every little detail about me and recognize the signs of my bad days before I do, I should have married a fellow mental health professional. Instead I married an engineer and engineers like to fix things. In many ways, our complimentary approaches is a key to what makes our marriage work: I help us recognizing and talking about the problems and then he helps us solve them. So you can imagine how unfortunate it is for him when he hears over and over again from my doctors that there is no fix for what ails me.

Hearing those words is hard for him, because deep down, my husband wants the real Selena back. So in defiance of the chronic illnesses that have a hold on me and won't let go, he won't stand by and let the sick Selena allow herself to be transformed into someone else . He keeps asking me to be me, like I was before I got sidelined and consumed by all my health problems. He wants me to do as much as I can do, be as much as I can be and act like I used to act before I became disabled. In many respects, he dogged determination to get me back inspires me to hold onto who I am and not be transformed into someone else by my illnesses.

Five years ago, I was never a person with a short fuse and I was not a person who snapped at other people. As I sit here writing this, I realize that I don't want to become that kind of person either. Instead, I need to better recognize how increases in my chronic pain and fatigue affect my mood and stop flare-ups from taking over and turning me into a grumpy mess. Yes, I need to learn to take additional steps to better care of myself in these situations instead of taking it out on my hubby. That's what the real Selena would do.

Thanks for breaking through my flare-up bad moments this week and reminding me who I really am, Robert. I love you for always reminding me who I am despite chronic illness.

Time Travel Is Tiring

Image by vernon_dutton via Flickr

I love science fiction. I devour episodes of Star Trek and Battlestar Galatica. I've seen every Star Wars film, most multiple times. I want to live in that future, where you get somewhere instantly by transporter, meet humanoids from across the universe and benefit from advanced medicine,, where most human diseases are distant memories from the past.

Sigh.

Yeah, this post isn't about science fiction. This post is about how going from standard time to daylight savings time seems to have caused a flare-up in my fibromyalgia symptoms. I know, it sounds like science fiction, but if you could witness first hand how I've been dragging myself up and around since Sunday, you'd know I was telling the truth.

Of course, it could be the sudden change in the weather, from cold to warm, but I do better in the Spring and Summer than the Fall and Winter. It could be payback from being sick with an upper respiratory infection for most of February. Perhaps my return to my normal schedule after being a homebody during the month of February has pushed me out of my energy envelope. But then I talked to my best friend last night and she said," You know, you mentioned the same thing when we turned the clocks back in the Fall."

I guess time travel is just too tiring for me and I think it is time for me to plan accordingly. Next time we move the hands on the clock forward or backward, I need to plan to take a week off to adjust. A week to just stay close to home, rest and relax, rent my favorite futuristic movies from Netflix and start my own private bi-annual sci-fi marathon.

Beam me up, Scotty!

What do you think? Does changing the clock twice a year have an impact on your chronic illness? Leave a comment sharing your experiences.

Fibro-Friendly Holidays: A Guide to Gifts that Teach, Share or Help

Image by Sarah Parrott via Flickr

Let me help you create a unique and inspired gift for each person on your list this holiday season.

The easiest way to get started is to think about the things you could teach someone else, an event or activity you could share with someone else or how you could help someone else out. Whatever you offer, make sure that the activity is reasonable and doable for you, i.e. fibro-friendly. That means it keeps you in your energy envelope so you minimize flare-ups of your symptoms. Take control and be specific about the particulars. For example, let the recipient know how long the session will last and how far in advance they need to schedule with you to redeem their gift coupon.

Keep in mind the "come to me" element of your gift. The recipient will be coming to you to receive your offer, whether that's at your home or a location of your choosing. Also consider mentioning the retail price of what you are offering to emphasize the value of your gift--just Google the service you'll provide and see how much it would cost to hire someone instead. Since your gift coupon builds in an opportunity for social time, it goes without saying that you will only offer your gifts to people you would enjoy spending time with.

Here are some fibro-friendly ideas:

TEACH:

• Offer one-on-one arts and crafts classes like crocheting, knitting, scrap booking, music lessons, flower arranging, photography or jewelry making and provide the supplies for a basic project.
  

• Provide hands-on, in-person instruction for skills like cooking, baking, canning and preserving food, gardening, household organizing and decorating, resume writing or meditation.
  

• Help someone become more computer savvy by showing them how to troubleshoot computer problems, design a website or blog or use a specific computer program.

SHARE:

• Invite your friend to join a book group with you and offer to pay for the first 3 books.

• With a mutual interest in mind, ask a friend to attend a community college extension course with you and pick up the tab.
  

• Share a day at the museum, an evening lecture, a concert or play at a local community performing arts center, a harbor cruise, a picnic at the park, a day at the beach or an afternoon at the movies.
  

• Do something with your friend their spouse and kids won't--eat at an ethnic food restaurant, go to a chick flick, take a mud bath, go see the wildflowers blooming in the desert or volunteer together.

• Offer the opportunity to come browse your CD collection and load songs to a new iPod. Or give blank recipe cards, a recipe box and an invitation to browse your cookbook and recipe collection.

• Share the harvest in your vegetable garden or from your fruit trees by giving a pick-your-own produce coupon.

HELP:

• Get your friend set up on social media websites by helping them create their own email, Facebook, Myspace, Twitter and/or blog account.

• Help them learn how to use their new technology gifts, like a lap top computers, digital camera or camcorder, iPod and MP3 player or Blackberry smartphone.

• Offer to help organize a CD, DVD or book collection. Or offer to help organize photographs, either online or into a photo album.

• Provide your services as a babysitter, pet sitter or house sitter. You can specify whether the kids and pets come to your house or if the recipient needs to come and pick you up when redeeming the coupon.

• Be a personal Internet shopper or web researcher for a day; help the recipient find the best price for a purchase or the online information they need.

• Make yourself available as a proofreader for the writers or a tutor for the students in your life.

I hope this helps get you started in your quest to offer personalized gift coupons to your family and friends this holiday season. As for me, I'd LOVE to get a coupon for some help decluttering and cleaning my house. Proofreading, a book club buddy, a trip to the Getty Museum, a sushi lunch and pet sitting would be cool too.

What do you think about giving gifts that teach, share and help? I'd love to hear what you think, so please leave me a comment.

Be Here Now: Leftovers

I am so fatigued right now, prostrated really. Thanksgiving took a lot out of me with all the preparing and cooking. Now I have tons of leftovers, not a bad thing because I love eating leftovers, especially dark meat turkey. Leftovers give me a planned break from cooking for several days, which hopefully will give me the time I need to recover from choosing to be outside my energy envelope for a day.

So it's all rest for me--absolutely no Black Friday Christmas shopping for me.

By the way, if you are so inclined, consider supporting Oh My Aches and Pains! this holiday season when you head to Amazon.com for your holiday shopping. Just click the link below and a small percentage of your purchase goes to support my blogging efforts. Don't forget to bookmark this link so all your shopping at Amazon.com can support Oh My Aches and Pains! I'd be very thankful if you would bookmark my Amazon Associates link!

Shop using Oh My Aches and Pains! Amazon.com link

So I hope you are enjoying your left overs too. Now here is a little something to make you smile. Check out these cute leftovers featured on The Tonight Show last night:

My Personal Energy Conservation Plan

Image via Wikipedia

Being green is the "in" thing to do and saving energy is all the rage. For example, people are switching to energy saving compact fluorescent lights (CFL) that use only 20% of the energy required to power an incandescent light bulb. These light bulbs make such a difference that by 2012, incandescent light bulbs will be phased out in the United States and become a thing of the past.

Too bad conserving my own personal energy isn't as easy as changing a light bulb.

I made another step in this direction today when I completed my second telephone appointment with the Workwell Foundation. As I did the first time, I talked with Meg who is an exercise physiologist. Today we went over my heart rate and activity logs.

Apparently, when you have chronic fatigue syndrome or fibromyalgia, your body doesn't work quite right any more. Sure, when most people go from laying down to sitting to standing, they have a corresponding rise in heart rate. For a normal person, their heart rate might peak at about 80 by the time they get to standing. For me, I start somewhere in the 70's lying down and get to a little over 100 by the time I stand up. Oh yeah, and that is with taking a beta-blocker to keep my heart rate lower.

No wondering I am tired all the time.

So Meg reviewed with me some of the principles of energy conservation and management:

1. Keeping your heart rate down is the equivalent to putting energy in the bank.
2. Break activities up into intervals and take a break between intervals.
3. If your heart rate gets higher by the end of the day or the next morning, it means that you did too much during the day/the day before.
4. Balance out activities over the week to achieve a consistent work load.
   
5. If you are standing, try to do the activity sitting.
6. If you are sitting, try to do the activity in a reclined sitting position.
7. If you need to bend down, try kneeling instead.
8. Focus on your breathing, slowly in for three counts and out for three counts, to make your heart rate go down.

I employ many of the specific suggestions she provided me during the hour long consultation, so my job over the next two weeks is to pay closer attention to the activities that are problematic for me and try to do them in a different body position or break them up into intervals. I also need to start working on strengthening my transverse abdominal muscles: these are the muscles that get activated when using your breath to fog a mirror, when you cough or when you prevent breathing out by pinching your nose. (You can try it now. You should feel a sensation near your belly button.)

I wonder if you activate your transverse abdominal muscles when you laugh. Let's do an experiment! Here is a light bulb joke. Read it while you place your hand over your belly button. Let me know what happened by leaving a comment.


Q. How many social workers does it take to change a light bulb?

A. One, but the light bulb must first fill out all the appropriate forms to determine eligibility for service.

Related articles by Zemanta

• A Brief History Of the Light Bulb (time.com)
• Lights Out For 100-Watt Incandescent Light Bulb In EU (inquisitr.com)
• The Death of the Incandescent Light Bulb (blogs.abcnews.com)

I Need Tomorrow to Recover From The Weekend...

Image via Wikipedia

I remember when I longed for the weekends to arrive, back when I was working full-time. That was only five short years ago, but it seems like a whole different lifetime to me now. I know that everything changes, regardless of whether or not you have chronic illness, but what surprises me is how living with chronic illness making everything seem paradoxical.

How I have come to view the weekends is a very good example. For many people, the weekends represent a pleasant and welcome break from work and the daily grind of the week. Weekends epitomize freedom, fun and frolic. As my friend Cynthia wrote on her blog, weekends are for wearing flip flops, the casual and carefree symbol of the weekend.

For me, the weekend can be perilous. It starts with disruptions in my sleep schedule, like when my husband wants to go to bed later and sleep in the next morning. When he gets up to go run his errands Saturday morning, he inadvertently wakes me up with this chain reaction: he shuts the bedroom door, wakes the dogs up and takes them out, the dogs start barking, I get woken up. To top it off, the puppy starts whining when he leaves and I often can't get back to sleep.

Another highlight of the weekend that I look forward to is having my husband at home all day. However, taking advantage of his presence gets me in some trouble. During the weekend, I try to engage him in the tasks that require his assistance and I wind up being torn between trying to get more things accomplished versus sticking to my rest and pacing routines. While I often manage to avoid getting flared up, I definitely spend more time out of my energy envelope that I usually do during the week.

Finally, the weekend has always been synonymous with getting together with family and friends. Problem is, socializing with my friends and family is more difficult for me now. I still yearn for social contact and enjoy being with other people, but physically and cognitively socializing has become exhausting and uncomfortable. In a noisy setting, I struggle with being both easily distracted and overwhelmed by the stimuli. The mere act of paying attention and engaging in conservation drains me. Sitting for long periods of time can be physically uncomfortable, but where in public can you lie down for a few minutes? Going to the movies has become a special form of torture, with the booming percussion, seat shaking loud sound effects and overwhelming visuals. And forget about dinner and a movie: it's one or the other for me now.

The real danger for me, just like good days, is the push to keep up and keep going at the pace my companions set. I am often very distracted and unaware of myself in the presence of other people, even when it is just my husband, and frequently discover that I have spent my social time way out of my energy envelope by the time I finally arrive back home. I manage the danger of social contact by limiting the number of social engagements I committed to and getting extra rest before, during (if possible) and after the outing.

So for me, the weekends have lost some of their shine and rosy glow. I won't go as far as to say that I no longer enjoy the weekends, but the weekends are definitely a challenge. So after a three-day weekend for my husband, I really need tomorrow to recover. You know, kick off those flip flops, lay down and rest.

Will I Pay Tomorrow for What I Have Done Today?

Image via Wikipedia

I am totally exhausted and worried. I'm afraid that I have gone outside my energy envelope today with a new addition to my routine that is going to be part of my weekends for the month of August. It is always a bit dangerous when I add something new and novel to my repertoire. I know I should approach new additions with caution, but sometimes even when I think I am being cautious my body doesn't quite see it that way. Harrumph!

Just like Alice in Wonderland, whose main problem was learning to manage her flamingo in Wonderland's crazy rule bending game of croquet, my main challenge is truly mastering staying inside my energy envelope with this crazy acting body I now inhabit. Oh the joys of having a centrally mediated pain syndrome like fibromyalgia ... which is just a fancy way of saying that I have pain because my brain isn't functioning properly at the moment.

I always worry that I am going to suffer tomorrow for spending time outside the my energy envelope today. Try as I might, sometimes I inadvertently disobey the Golden Rule of Chronic Illness: If I pace I can play. If I push I will pay. Fortunately for me, my hubby will be home with me tomorrow and can accompany me to my doctor's appointment in the morning for my annual gynecological exam, where I will get the results of my annual mammogram. If I wake in the morning and it looks like I will pay, at least I have help making it through my day.

Here's to a tomorrow with minimal repercussions from living outside my energy envelope today.


My Reading Suggestion:

I own and have read the book Fibromyalgia and Other Central Pain Syndromes. While similar to reading a medical journal or textbook, I liked the book because it does present a lot of useful and technical information beyond what most self-help style fibromyalgia books provide.

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.
   

Related articles by Zemanta

• ME/CFS & Fibromyalgia Around the Web (fightingfatigue.org)
• Coping with Someday in Constant Pain: Dorian (aka coffeesister) Interview (somedaysyndrome.com)
• The Invisible Illness (blisstree.com)
• What Would Bill and Dave Do? A Memorial Day Remembrance (myventurepad.com)

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