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.

Either Or, Never And

Either Or, Never And

I got a haircut today.  It may not seem like much cause for celebration, but, for me, it’s a pretty big deal.  After all, it means that I am halfway to meeting one of my resolutions for 2015 — getting my hair cut twice. In one year. Whoa.  Crazy I know.  Way to reach with that goal.

But, it is indeed a pretty big goal to have given that I haven’t had more than one haircut a year for probably the last three years.  My last haircut was almost a year ago.  Living with Chronic Fatigue Immune Deficiency Syndrome (the Institute of Medicine recently recommended changing the name to Systemic Exertion Intolerance Disease, or SEID) my life has been reduced to a series of “either or” choices I make throughout the day.  There are no “ands.”  Yes, everyone has to choose what she does each day, but for someone with a chronic illness those choices can be much more limited.  Things I took for granted before I became ill I now have to plan with meticulous detail.  My months are planned out two at a time on whiteboards hanging in the hallway.  Each activity is allotted a certain number of minutes so I know when I’ve reached what  — through much trial and much more error — is my total limit of all the activities I can handle in a given day before increasing my symptoms and risking a crash, or worse, a relapse.  Each day I write down how many minutes I spend doing my various activities so I know when I’ve reached the limit.  On my good days, I make it all the way to the top of my allotted time.  It’s been about three years now — since my last significant relapse — that I’ve successfully reached that limit more than three days in a row.  And that has just been in the past month.

My list of activities fills quickly with just the basics and doesn’t leave much room for luxuries like getting a haircut.  I have very little time for “free” activities.  So the “either or” choices come in.

I am fortunate to be able to continue working part-time.  My working hours take up by far the most of my available time and energy limits.  And, often, by the end of the day, I have nothing left in me.  Working days I don’t even wash my hair.  On the really hard days, I just do a quick wipe down with the facecloth and forgo a shower, thankful that I work from home and have a husband who keeps me supplied with French perfume. But those are the choices — I either work or I have clean, pretty hair.  A ponytail holder has become my best friend.

My non-working days are full of those “either or” choices.   I either clean my house or I do agility with my dog.  I have chosen agility.  Selfish perhaps, but that time in class is sacred to me.  For a brief moment in time I just enjoy.  I need the break from my illness that I get from seeing the joy on my dog’s face from having so much fun, of learning something new, of moving, being part of life.  Sure, when I come home I’m in bed the rest of the day and lying on the couch in the evening.  It’s either or, not and.

Other days, I either cook or I spend time with my husband.  Some days I cook, making enough for leftovers for much of the week that can just be reheated or pulled out of the fridge and eaten as is.  Some days, my husband and I enjoy an outing and we eat frozen foods or takeout the rest of the week. 

I either go to the grocery store or I do pet therapy.  I do pet therapy visits up to three times a month.  Groceries can be delivered, my husband can go, meals can be delivered or I can do short trips on days I don’t have visits.  Shopping wears me out.  Sometimes it takes several days to recover and I’m unable to prepare the food I’ve gotten before it goes bad.  And, again, I need to remove myself from my illness.  I need to think of life outside my illness because if I let it, it could be all consuming.  The feeling I get from knowing that no matter how hard so many of my days are that I am still able to make even a small difference to bring some happy to someone else’s life is a much better feeling than I ever could get from a haircut.

Yet, I actually cried as I left the salon today.  I felt like such a dork.  My haircut was simple, just a few inches off, enough to get rid of the split ends and long enough that I can still pull it back in a ponytail. Still, it made me so happy.  It took maybe five minutes and felt like such a normal thing to do.  But I know how much effort it took for me to be able to get there.  I’ve been planning on getting my hair cut on a “free” day for about six months.  Most of those days, however, I didn’t even get an either or choice.  My illness decided for me.  I lie in bed, hoping to recover enough to spend some time with my husband over the weekend and be ready to go back to work by Monday to start over again.  Today, school was canceled, which meant a scheduled pet therapy visit was canceled.  I had an unexpected free day.  Not only that, I had that unexpected free day at a time I had the ability to leave the house.   Maybe once in a while I do get an “and.”  For sure, that is something worth celebrating.

International Awareness Day for ME/CFS

Today, May 12, is International Awareness Day for ME/CFS (myalgic encephalomyelitis/and Chronic Fatigue Syndrome) and Fibromyalgia.

Groups around the world dedicated to finding treatment, a cure and provide hope for this illness have engaged businesses, governments and individuals to light up their buildings blue, purple or green to shine a light on this illness that can be as debilitating as multiple sclerosis, lupus, COPD, heart failure, late-stage AIDS and end-stage renal failure.

I was diagnosed with CFS in 2006 after six years of trying desperately to learn what had caused me to go from a practitioner of martial arts, a volunteer in the Big Brother, Big Sister program and full-time worker who never missed a day of work for sickness to working part-time from home as someone unable to make it through the day without multiple naps, frequent muscle and joint aches, swollen lymph nodes, unfreshing sleep and even the inability to take a shower without needing a nap.

Even after receiving my diagnosis, it took another seven years for me to find a doctor who would help me.  Most dismissed me as “difficult.”  One even refused to allow me to mention my illness during our visits and then was surprised when I mentioned I was looking for another doctor. There is no cure for CFS and finding a regime of treatments that can provide some relief takes a lot of trial and error, tweaking, and, as symptoms change or worsen, many start overs.  It is a tiring process for sure.

So it is heartening to me to find so many people working so hard to provide education and awareness about the illness and seek many creative ways to raise funds for research.  People are hosting sleep-a-thons, shooting documentaries, and selling teddy bears and T-shirts, to name a few things, all in hopes of raising awareness and funds for various research programs across the world.  In the United States, efforts are underway to get Congress to add $50 million to the research budget for ME/CFS at the NIH over 5 years, which would triple the funding now available.   Here is a link to an article outlining more about that process:  http://www.cortjohnson.org/blog/2014/05/11/fifty-million-dollar-chronic-fatigue-syndrome/

Research into the illness and it causes is so important.  Recently, I learned of a 12-year-old girl who may have CFS.  She has been in trouble for missing a lot of school lately due to her unrelenting fatigue.  She also is missing out on one of her favorite things – doing agility with her dog.  She is devastated.  She wants to participate in her life.  I have yet to meet the girl, but our agility teacher conveyed her story to me as last year a local hospital did an article on integrative medicine in which I talked about my struggles with CFS and how I had found a doctor that was willing to help.  Our teacher shared the article with the girl and she and her parents are hoping to visit my doctor to see if they can get some answers.  I hope they can.  I hope the answer is not CFS.

My heart breaks at the thought of a 12-year-old girl having CFS.  People with CFS appear outwardly as “normal” or not sick.  The same goes for children with CFS.  Unfortunately, this means adults are accused of being lazy or depressed and children are often accused of just wanting to avoid school or told that they are just experiencing growing pains.  Forget that they are also missing everything else in their lives.

As an adult, it has been extremely difficult to listen to people not believe you, tell you that you are just being difficult, that they resent you and get mad at you for all you cannot do and even say they don’t want to be around you because your illness is just “too hard” for them.  All when you are just trying to make it through the day – or even a moment.  As an adult, I have gained some coping skills that help me navigate the illness, or at least the ability to tell people they are out of line, if not always in the most polite manner.  I cannot even imagine being a child just learning the coping skills needed for making her way through a normal life and having to endure that kind of torment – all while trying to adjust to having an incurable illness.

Sure, some children diagnosed with CFS have gone on to recover, but most do not.  Some studies have found up to 37 percent of children diagnosed with CFS recover, but, more likely, they will experience periods of remission and relapse.  For the rest of their lives.

This is why days such as today are important.  Raising awareness.  Raising funds. Perhaps, if $50 million in funds for research over five years can be raised, a reliable way of making an accurate diagnosis can lead to a way for a cure or at least better treatment that won’t leave up to 25 percent of people suffering from CFS bed-bound, unable to leave their homes or even speak out about their illness and the devastating effect it has.

Today, we have placed blue lights in a room in our house dubbed “The Globe.”  Our way of showing support for those suffering from this illness across the world.  I also painted my nails blue.  The color on the bottle says it’s “In Prompt Blue.”  I think it looks more like “Tardis” blue.  And, if I had a Tardis, I would travel back in time to a place before I had this illness, pick up that stronger, healthier version of me and get back in to travel through all of space and time to find a cure for this illness in the hopes that no 12-year-old girl ever has to miss out on a life for which she has only just begun dreaming.

For more information on CFS and Pediatric CFS please see the links below:

http://solvecfs.org/

http://www.may12th.org

http://fmcfsme.com/cfs_pediatric.php

New Day

New Day

I have been thinking much in the last several weeks about how thankful I am that I have come so far from where I was a year ago and had the worst relapse I’ve had with my CFS since I first fell sick in 2000.  In the waning days of September 2012 and the beginning of October 2012 I knew I was going through a rough patch.  I had hoped that was all it was.  If I just hunkered down, it would pass.  Then one October Saturday morning, I went out the back door to take Dagaz for a walk.  By the time I made it around to the front of the house I wasn’t sure I’d be able to make it back around.  It felt like not one, but a whole fleet of two-ton trucks had landed on me and there was no moving them.  I made my way upstairs to bed. I cried. I prayed this wouldn’t be the relapse from which I wouldn’t recover, knowing all too well any one of them could be.  I told David to go out and get me a lap desk from for the computer as there was no way I’d be able to sit up for work.  The next month and half, I worked from bed in the dark.  Grateful to have a job in which I could do all I needed to do in those conditions.

I did little else in those months.  I stopped going to agility class and writing.  David took over the shopping and most of the cooking and house hold chores.  I sat on the stairs, throwing food for Dagaz to chase so she could get her exercise.  Walking of any sort was out of the question for me.  Many days, I had to plunk my butt on the stairs and scoot up or down, as I had no energy for anything else.  Even that left me worn out.  I was grateful for doggie day care, and I was grateful for the agility jumps my instructor had made for my birthday a few months before.  As I threw food over the jumps for Dagaz to go after, I told myself it was helping us learn distance for the day we would be able to get back to class.

It was a hope I had to hold on to.

Those few months were brutal.  The fatigue that goes with CFS is not a fatigue that can be explained.  I have tried, but can only grasp at impotent words.  The fatigue seeps into your cells and travels throughout your body, leaving nothing unscathed in its wake.  Sound hurts. Light hurts. Motion hurts.  Air hurts.  All of those things join together for a full on assault on your body.  It is unrelenting.   It takes your voice and your mind, leaving a shell that looks normal on the outside, but is pockmarked with the ravages of exploded grenades on the inside.

October drifted into November, which drifted into December.  Instead of the hustle and bustle of the holidays, there was torpidity, fear and guilt.  Guilt is never far from CFS.  It sits on my shoulder, maliciously whispering into my ear all I no longer can do.  Christmas shopping was out of the question; if it couldn’t be found on-line and shipped, it wasn’t going to be found.  David convinced me to go home for the holidays.  Still spending little time out of bed, a journey of any type wasn’t something I was sure was in me.  For him I am grateful.  We went.  I watched the activities from a distance, remembering little of the day. 

I came home. I went back to bed, sick on top of the relapse.  Still, I am glad we went.  I had made it.  There was a light.

I started walking again with Dagaz – five minutes at a time and then back to bed.  We slowly started back to agility class.  I was so ecstatic; you would have thought I’d won a marathon.  Forget that before and after I could do nothing but sleep and that during it felt like a two-ton truck was sitting on me.  It was only one truck, though.  Slowly but surely, the fleet was going away.

By March, the lymph nodes that had been swollen in my neck since the previous April and had hurt so much that even laying on pillows was painful had shrunk back again with just the occasional ache.  I signed up for an agility trial.  It was heaven.  The next few weeks after the trial were hell, but those few moments in the ring were absolute heaven.

The days were hard, but each day I was able to do more again.  A minute here, a minute there, turned into a few minutes at a time, which turned into a half an hour here, a half an hour there.  I attempted to go grocery shopping again.  Just a few items.  It was too soon and I spent the next few days in bed again, but I had done it.  Since then, I’ve gotten to the place where some days I can walk with Dagaz for up to 15 minutes at a time.  Some days even multiple times a day.  I no longer worked from my bed.  The lap desk sits in the corner of the bedroom; I smile when I see the layers of dust it is collecting from non-use.

Dagaz and I started doing pet therapy in the past year.  I started writing again, and even signed up for an agility trial in December, just two weeks from Christmas with my family.  The thought of doing any one of those things — let alone all of them — last year at this time seemed more than impossible.  Now it seems wonderous.

Yesterday I went to agility class, did laundry and in between naps did some Christmas shopping and still was able to go out for a wonderful date-night dinner with David.  I cried again as I went to bed.  These were not the tears of fear, but of relief.  This relapse was not THE one.  It may still be out there, but not yet.  Not now.  Each day is a new day.  For that I am grateful.

The Timer Of My Life

The Timer of My Life

When I decided to write a blog about my dealings with CFIDS, one of the things I thought about was what to call it.  How could I capture in a title what it is like to live with a debilitating illness?

I came up with many things.  Most of them unprintable.  I kept returning to the one lesson I have to learn over and over— on a daily basis, an hourly basis, a moment to moment basis.  My time is no longer my own.  There is a great big, fascinating world out there that I want to be part of, but my body will not allow. 

I have learned that if I push too hard on the good days, I have more bad ones.  It was not a lesson I learned easily, and one which I frequently test only to fail again.

So the timer has become my guardian.  There is pretty much nothing I do any more to which I don’t set a timer to limit myself.  I time my showers, my walks with the dog, the amount of time I clean, do yard work, write, shop, work. 

When the timer goes off I move to the next thing whether the task before me is complete or not — a break for a rest always in between any activity I do.  Things will get done or not.  I’ve learned mostly to accept it.  I set the timer for my naps so I don’t oversleep.  This illness being such that without my timer, many days I would be unable to do more than sleep or sit like a zombie in front of the TV.

This is not the life I wanted, but it is the life I have. I do not like it.  I hate missing birthdays, celebrations and canceling plans.  I hate that I have become afraid of making plans, knowing I’ve had to cancel so many things in the past and I again may not be up to leaving the house for a scheduled outing.  Over the years I’ve fought it, and through the years I’ve made plan after plan in hopes of figuring out some way I could do the things I wanted and needed to do.  I passed plan Z long ago.  But with each plan that fails, I try again, keeping what worked, discarding what didn’t.

The timer has been the one thing that has kept me going.  With CFIDS the most important aspect — besides getting enough of the ever elusive, ever needed sleep — is pacing oneself so as not to get into a push/crash cycle where you do too much on a good day — or any day — only to crash and spend days, weeks, months recovering.

Long ago, I stopped setting my alarm clock to wake me from my daily naps.  It became annoying to constantly change the time each time I needed to rest.  I tried an alarm clock with a double timer — one for mornings and one for naps — but when I would need or have time for my naps changed too much.  The timer became the solution.  More than regulating my naps, though, the timer became a way for me to partake in and enjoy as much of life as I can. 

The strategy is far from fool-proof.  After all, it only works when I let it and I often get annoyed by not only the sound of the timer, but the mere sight of it.  I don’t like the reminder of the limits placed on my life.

But, then, I pause, as I must when the timer goes off and am reminded what those moments in between the beeps have brought me.  They are not all the moments I want, but they are powerful in their mere existence.  I can hold hands with my husband.  I can work.  In a few minutes, I can plant a couple seeds that will grow into a beautiful flower that all the neighbors can enjoy or into a mouth-watering tomato that will taste better than anything from a store and much closer to my kitchen. I can send an email to a friend and bring a smile.  I can teach my dog a new trick, which she will perfect over many small moments together.  I can write a few lines for a picture book or a few lines for a blog that — if I’m lucky — will help shed even a little light on the devastating effects of CFIDS. 

This is not the life I wanted, but it is the life I have.  Moment by moment, it all adds up. I am grateful for all them.

            Time’s up.

Pulling Back The Covers

On Tuesday, July 18, 2000, I fell asleep taking a shower and I joked bittersweetly that my life went down the drain, leaving a broken, battered and, so I’m told, beyond repair new me.  It took a cat named Goo, a horse named Barclay and voices from the shadows to remind me that though my life changed dramatically, it hadn’t actually ended, and broken or not, I still had dreams to pursue and differences I could make. 

From that day, it took until October 2006 and visits with more doctors than I can count in four states to learn that my immune system is faulty, that there is no way to repair the damaged cells and that I had Chronic Fatigue Syndrome.  It isn’t something I talk about much.  I’m from Ohio.  We don’t talk, discuss or relate.  We deal.  Besides, just the name of this illness makes me cringe.  It is so much, much more than being tired all the time.  Eleven years later, I tell my husband that I wish I felt so good as to just be tired.  Usually, I refer to it by its other name — Chronic Fatigue Immune Deficiency Syndrome (CFIDS) — because at least it points out that this illness is more than being tired.

Mostly, though, I am fearful.  I fear being told I’m just depressed or that if I just exercised more, I’d get over it.  I fear being told if I ate better, lived a more balanced life, got more fresh air, I’d feel better.  I fear being told that everybody’s tired, get over it. I fear being told that there’s nothing that can be done for you so don’t bother showing up at my door.  I know none of these things are true, and these fears I have faced — from comments made to countless remedies tried and failed.  It is exhausting and painful to listen to cruel comments and condescending judgments when I’m fighting so hard to make it through the moment, the day, my life and I don’t know how I can possibly find the strength to fight another battle.  I let my fears control me. 

I also fear being perceived as lazy and weak because I don’t get better no matter what I do and that means somehow it must be my fault after all. I just haven’t tried hard enough.  I fear losing my job should my employers find out. So much of our self worth is tied up in our professional lives; losing my job would be like saying, see, you really are broken beyond repair.  You can’t even support yourself.  You and your defective cells are a waste of space.  I have not faced these fears and I have no reason to believe they are true.  Not all fears are logical.  But there does come a time when they must be faced.

For me, that time is now. 

Which brings me back to a cat named Goo and horse named Barclay.  For as long as I can remember, growing up I wanted two things more than anything — to be a veterinarian and to learn to ride a horse.  I read all the books on animals and horses I could.  At the county fair, I’d get “lost,” in the horse barn — the rest of my family moving on while I stayed beyond to stare in wonder at all those magnificent creatures.  For career day in high school I’d be first to sign up to visit a vet’s office.  We had to put down two choices; I never had another one.

I grew up and moved on.  I left the horses and dreams of rodeos, trail rides and camping beside an open fire and under a starry sky behind.  I told myself I wasn’t cut out to be a vet.

This year, my cat Goo became sick.  So sick, I thought he would die. He spent over a week at the emergency veterinary’s office.  I brought him home, complete with feeding tube and instructions on how to help nurse him to recovery. For two months, I mixed his special mixture of food in the blender and fed him through his feeding tube.  I gave him his medicine three times a day and made sure he ate, drank and used the bathroom.  Never did I think I would pay so much attention to the bowel movements of a cat.  Yet, in those two months I was a vet.  True, I didn’t diagnose.  I didn’t operate.  I didn’t put in or remove his tube.  But, slowly and sure, I did help him recover. My “loveable lump” remains my lovable lump and I’ve never been so happy to see a cat soaking up the sun.

This year I also took horse riding lessons.  The first horse I rode was Barclay, an Arabian.  Oh my.  Of all the horses I dreamed about owning (and maybe raising), Arabians were in the top two.  I had died and gone to heaven.  I don’t think any kid in a candy store ever felt such happiness and joy as I did riding around that ring.  Barclay quickly became my favorite of the horses I rode during those lessons.  Alas, the riding was proved too much and I spent too much time recovering after lessons.  I donated my remaining lessons.  I can only hope whoever used them felt the tiniest bit of joy that I felt riding around that ring.

Caring for Goo and taking riding lessons, prompted me to think about those childhood dreams.  I told myself I changed my mind about being a vet because I didn’t have the patience or temperament.  Really, though, what I wanted most was to write.  My writing path took me on an internship and job at a school of medicine and later reporting on hospitals and writing about health care.  I didn’t know it was leading me to here and a way to cope with my own illness and maybe help others in the process.

I should know that, though.  Writing is powerful.  Words have a way to heal us in ways medicine can’t.  They can provide laughter, tears, information and common ground.  They have been the catalyst for change.  They have shed light on the darkest of times. They do make a difference.

Recently I watched a documentary called “Voices From the Shadows.”  It’s a British documentary that chronicles several families who have loved ones suffering from CFIDS or myalgic encephalomyelitis (ME) as it’s called in most countries besides the United States. The documentary talks about the devastating consequences psychiatric prejudices and medical ignorance can have in treating —or I should say, not treating — the illness.  It was heartbreaking, anger-inducing and tear-causing.  I turned it off multiple times.  It was too painful. Yet, I had to watch.  These people were suffering from what I go through every day — and at much worse levels.

I spend portions of every day in bed, some days more than others. Some days I hurt.  Even the covers on the bed in which I seek solace cause pain. My head is filled with wet cement and my brain moves like Jello. I lose my voice. I don’t remember words or I make them up. I sleep, but wake up feeling as if I’ve been running a marathon or have been denied sleep for days.  I can’t sleep, my body both wired and tired.  Some days I must chose between work or a shower, eating or sleeping, giving in or fighting on.  Some days I don’t get to chose.  Yet, I am lucky.  I am able to get up, feed myself, dress myself, leave the house.   The people in this documentary were bedridden and, some, fed through straws.  They were disbelieved and denied care.  Some were pulled from their home, forcibly committed to insane asylums.  Family members were accused of enabling and inflicting abuse for seeking help and refusing to take the word of the “authorities” that nothing was wrong with their loved ones.  Most of those suffering from ME in the documentary died. Their autopsies revealed multiple physical problems.  There were no apologies.  There were no do-overs. 

It was motivating.  Words — stories — can do that.  My next crash and that could be me.  It is others.  It doesn’t need to be.  I write about the law because I believe that although wrongs are committed, rights can be made.  I write picture books because I believe everyone should learn to read and see where the world can take them. 

I will write about my battle with CFIDS because I believe there should be no voices in the shadow.  There should only be light.