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.
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:
Keeping your heart rate down is the equivalent to putting energy in the bank.
Break activities up into intervals and take a break between intervals.
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.
Balance out activities over the week to achieve a consistent work load.
If you are standing, try to do the activity sitting.
If you are sitting, try to do the activity in a reclined sitting position.
If you need to bend down, try kneeling instead.
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.
The future is here: we have solar panels! The installation on Wednesday went smoothly and the subcontractor, Verenego Solar, completed the job in one day, from 8:30 am to 7:00 PM. Tomorrow L.A. City inspects the work and gives it a thumbs up or thumbs down. Until we pass the inspection, we must wait to turn the system on and start reaping the benefits of the sun courtesy of our solar system lease with SunRun.
My neighbor across the street came over today and inquired about the solar panels. She said she missed the tree that used to be in our front yard. We had a huge melaleuca tree in the front yard, pictured at the top of this post. I miss the tree too, but have plans to replace it with something much smaller, something that won't shade the solar panels. I'm thinking maybe a semi-dwarf avocado or other fruit tree.
We've entered new territory here and I am anxious to see how this is going to turn out once we pass the inspection tomorrow. I can't wait to take a video of the solar meter when it is actually spinning.
In the meantime, here are some photos (rooftop ones courtesy of my hubby on a ladder):
Tomorrow we go solar and I'll tell you upfront it's not for the reasons you might be thinking. Sure I want to try and be a little bit green and I want to help fight global warming, though I don't consider myself a modern day hippie or environmentalist. Being environmentally friendly is what inspired a lot of our neighbors in Mar Vista to go solar and landscape with drought tolerant plants. It's a trend here in our community and we might just use this explanation when neighbors ask about our new solar panels. But the real reason we are going solar tomorrow has more to do with the present and our concerns for our future: the reality that for the foreseeable future I am disabled, my limited and fixed income is Social Security Disability, I stay home all day, nearly every day and the inevitable future rise in energy costs.
When you stay home all day, your utility bills go up. You don't get the benefit of staying cool or warm, among other things, at an employer's expense. The increase in our bills wasn't dramatic or monumental, but the decrease in our income was when I stopped bring home a paycheck. I won't lie: it's been a rough adjustment trying to make our budget work with less income. That's why I encourage my husband to consider out-of-the-box ideas to keep our expenses manageable. The reality is that over time the cost of power, water and natural gas will increase in price. So our investment in solar is our attempt to take the sting out of future power price increases destined to occur over the next few decades.
We found a unique way to go solar with a company called SunRun. Instead of paying for the system up front, we are leasing a system with a guaranteed power output, included monitoring, maintenance and repairs, plus an option to buy at the end of the 18 year lease, for a low down payment and affordable monthly payments. Our electric bill will be modestly decreased the first year, with the savings increasing year after year. So it really didn't cost much to go solar the SunRun way: the system payment plus our LADWP bill is projected to be less than our current LADWP.
So this is how my chronic illness influenced the leasing of renewable energy and how tomorrow solar panels get installed on the roof of my house. Hope they don't wake me up too early with a rukus on the rooftop!
P.S. Let me refer you to SunRun. If you live in Southern CA, send me an email with your contact information and I will connect you with our very knowledgeable and helpful solar rep Brian. Plus you'll be helping me out with a nice referral bonus. To contact me, just click my picture in the About Me section on the right sidebar. Thanks!
Image by emdot via FlickrWelcome back to another edition of Mission 2011.
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