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.