SNAILS: Getting It Done

Allons-y

And with that, on Dec. 1, 2014, I was off on my first half marathon walk, attempting to earn my very first “Doctor”-approved medal.    I just finished today – May 11, 2015.  Appropriately enough, although not planned, I finished the day before International ME/ CFS and FM Awareness Day.

In all, it took me 46 walks and 8.50 hours, but I did it.  When you have chronic fatigue immune deficiency syndrome (CFIDS), chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) or systemic exertion intolerance disease (SEID) — otherwise known as the illness with a thousand names, but no known cause and no known cure — things take a bit longer. After all, a defining trait of this illness is post-exertional malaise (PEM), which basically means anything you do, can and will be held against you.

Walk This Way

I had to take precautions. One of the parameters of my daily life is I must stay between 1,000 and 5,000 steps. It helps keep me from overdoing and, hopefully, keeps the PEM at bay.  But for this goal, only actual walks counted, not just steps. 

I also have to keep all of the activities of my daily life within a certain amount of hours; I’ve learned that when I go over this limit things slide downhill.  Fast.  The climb back up the hill…not so quick.  And there can be a lot of rock slides along the way. I had to weave the walking in with everything else I must do — work, eat, bathe.  In other words, the necessities of life.  Still, I feel fortunate enough that I am at a level with this illness that I could contemplate — and finish — such a feat, no matter the time it took.  Many others with this illness are not so fortunate, unable to even get out of bed or leave the house.

A few months before starting this walk, I had joined a Safe CFS/ME exercise group, so I had a place to turn to for guidance and support.  This illness truly is a “damned if you do, damned if you don’t” kind of hell.  Not enough exercise and a person with CFIDS can waste away, leaving her bed bound.  Too much exercise and a person with CFIDS can waste away, leaving her bed bound.  The line of what can be accomplished changes every day and gives no warning. 

One of the tools for exercising safely is using a heart rate monitor to make sure my heart rate comes back to its resting level before going on to any other activities. But, here’s the catch.  Just starting out on the program, I had to cap my heart rate — for everything I do — at 60 percent of my maximum level.   For me, that’s 105.

I figured I already was walking regularly, sometimes twice a day, so, hey, I got this.  I soon learned it wasn’t going to be easy at all.  During my preparation period, I started wearing my heart rate monitor to get an idea of what was going on.  My heart rate would spike up to almost 140 just standing to brush my teeth and up to 200 standing at the counter to chop vegetables.  Going over the heart rate cap in and of itself isn’t dangerous.  In very simplistic terms, when doing any type of physical activity, a person with CFIDS goes into her reserve wells quickly.  Only there really isn’t any reserve.  Instead — akin to pulling too much money out of the bank when there is none — she goes into debt. That debt must be paid off before reserves can be built up. But that debt is paid off in pennies while the withdrawals are made in hundreds and every activity adds to the overdraft notice.   So, now sit on the toilet when I brush my teeth and scoot around the kitchen on my wheeled stool when preparing dinner.  I use a chair when doing laundry and sit on the floor to get dressed.  The goal is to build up endurance, so eventually I can tap into it on some days without going into debt.  Or, at least not as far into debt.  It is an agonizingly slow process, but it works.

SNAILS: Getting It Done

In the first three months of the exercise program, all exercise was to be done flat on my back to help build up endurance and to keep me from going over my heart rate. That meant no walking.  I missed my daily walks with my dog, Dagaz, and she missed them as well.  After a month of prep work and then two months on my exercise program, I became antsy and wanted to reintroduce walks into my daily activities. 

I made a plan.  I’d follow the outline for the exercise program, which just starting out is one minute of exercise (now walking), followed by two minutes of rest times for three sets and gradually building up from there.   I could proceed to the next walk only if I didn’t experience PEM.  I also decided it would be acceptable if my average heart rate for the entire walk was below my cap; it would be too unrealistic to think my heart rate would always stay below my cap while walking.  But now, I had a goal and a good luck charm.  The Doctor was on my side.  A group of fans of the television show Dr. Who have established virtual races where participants can earn medals for completing a 1 mile, 5K, 13.1 mile or 26.2 mile walk or run.  When a medal featuring my favorite doctor — No. 10 — became available, I had to give it a shot.  After all, Dr. Who features perhaps the only doctor that I have been able to count on since I first became ill.  I could hear the wheezing and groaning of the TARDIS — the time machine that takes The Doctor on his adventures through time and space — calling me to the finish line.  I was going to get that medal. 

The walks were frustratingly slow.  I would walk, rest, walk, rest.  I’m sure I looked silly sitting in the middle of the sidewalk during my rest periods, but I was doing it anyway.  During these times, I had to keep repeating the mantra I use for all the times I get frustrated with this illness — SNAILS: Getting it Done (Superactive Not Advisable, Instead Limiting = Success).  Yea, that’s me, a person with CFIDS always slugging it out and leaving a slimy trail of fatigue behind me wherever I go.

K-9 Companion

Dagaz turned out to be almost as good a barometer of my wellbeing as my heart rate monitor.  Prior to employing this method, many times we’d start out for our walk and she refused to go.  I had suspected it was because she knew I was having a rough day.  Turned out I was right, and so was she.  The days my heart rate was too high, she wouldn’t leave the yard.  Or, if I made her go — I always feel guilty about not getting her exercise — she would stick her nose into the grass and become one with it — as if to say, “I’m not here. You don’t see me, so you have no reason to walk.”  I finally learned to trust her and would find another way to get her exercise that day if she balked at the gate.  Another time, while already out walking, my heart rate went too low. Even though I felt dizzy and short of breath, I told myself the monitor just wasn’t working right — even as it kept going down and down until it reached 43.  We were close to our usual resting spot, so I figured I’d just take some extra time there.  Dagaz had other thoughts.  She simply stopped walking and there was no budging her.  Having learned to trust her, I sat down.  She immediately leaned up against me as tight as she could.  We waited and waited some more. Finally, she stood up, wagged her tail and with a grin started walking again.  My heart rate was back to normal and it stayed there the rest of the walk.  It’s happened too many times for me to think it’s a coincidence.  She is my guardian angel, always looking out for me even while I’m trying to look out for her.  She was also my constant companion, walking every step of this 13.1 miles with me and I’m sure I couldn’t have done it without her prodding me further on my good days and stopping me on my bad days.

Starting out, I was feeling optimistic, as I could occasionally walk up to a half a mile keeping my heart rate in check and no PEM.  But, then as the holidays approached, even though my resting heart rate would come down, every movement spiked my heart rate up and I couldn’t walk without going over my average.  PEM struck with full force as it usually does around this time of the year from so much extra activity.  The days between walks became longer. The walks became shorter.   Finally, I had to take a full on break.  I was frustrated.  I had to start at the bottom again.  With temperatures in the single digits, I couldn’t walk outside as it was too cold to sit on the sidewalk for my breaks. My wonderful husband cleared a path in the basement, so Dagaz and I could walk down there.  I’d walk a minute and then lay on the ground for two minutes.  Sometimes I could only get one minute in before my heart rate would go to high and not come down on my rest.  During that time, sometimes I’d only make it .02 miles, but we were still moving and I was back to keeping my average heart rate in check.  Over the next few months I was able to go back to the full one minute on, two minutes rest times for three sets.  Then, we moved to walking outside, just in the yard, and finally down the street again, slowly making our up to quarter mile walks.  In all, of my 46 walks, I was over my average heart rate 11 times.  Not bad.  I still haven’t hit the half mile again, but now I have my next goal in sight.

Allons-y.