Deterioration

It's amazing how much you can do while slowly deteriorating physically. Not everyone can see the changes. But, I see them. Slow and relentless effecting my every physical act. 

Getting up each day requires an assessment.  What is my capacity for walking today?  First thing in the morning, I have to determine how many hand holds I need for going from the bedroom to the bathroom to the living room.

What is my energy level today?  Well, that's a moving target.  At this moment, maybe I feel like doing anything is like walking through six inches of mud.  Maybe later on, I will only notice one inch of mud.

When I'm ready, I start thinking about bathroom business and making breakfast and lunch to go to work.  There are multiple issues threading my way through getting ready for work:

- Taking medication in the form of pills.  I can't hold pills well anymore.  They jump out of my fingers, usually hitting the floor, landing somewhere, and vanishing.  Fortunately, we don't have small children.

- I make tea and marvel at whether I spill water, tea, or honey.

- It is no longer safe, from a spillage perspective, to hold an open container of liquid thoughtlessly.  I am a ginger ale a day person.  I favor aluminum cans.  Last year, my partner bought me a six pack of plastic ginger ale bottles with lids.  What a revelation!  The spillage reduced exponentially.  I hate plastic bottles so everyday I poor my aluminum can of ginger ale over the sink in the same plastic bottle used over and over.

- In addition to saving the floor from ginger ale, it has also saved many a workplace desk.  I take a sip and always put the plastic cap back on.  I can't tell you how many times I've visited folks with offices, keep the plastic cap on, and sigh with relief when somehow my arm manages to tip the bottle over harmlessly onto their desk.

- I also have to pace myself.  It used to be if I was 20 minutes late I could just speed things up.  But, not anymore.  To hurry just invites disaster.  If I have to hurry, some step just needs to be cut out completely.  Otherwise, I risk making a mess or entering into so much pain that I just have to stop moving for a bit.  It's hard to make an appointment when I have to stop moving prior to leaving the house.

One of the things that drives me crazy is that I can look fabulous but feel like total shit. One of my favorite lines is, "Just because you feel like shit, doesn't mean you have to look like it."  The theory is a mixed blessing.

This all started in June of 2011.  I was just recovering from a deeply dangerous depression nearly loosing my partner and probably my life.  I had been going to the gym, seeing a personal trainer, and loving it.  When I walked through the parking lot from work to the gym, my feet started feeling funny.  

My feet began to be very unhappy in shoes with some kind of buzzing feeling.  I tried all types of shoes including leather, sandals, tennis shoes, and just plain socks.  For a long while, walking around in socks at work was the better choice.

Sometime towards the end of that year, I saw a foot doctor and a neurologist who both said I had neuropathy in my feet, peripheral neuropathy to be precise. But, there was no clue as to why.  It was not the worst thing in the world, and I soldiered on.

I kept going to the gym.  In late 2011, I got this extreme pain down the right side of my leg.  In the search for that cause, I learned I had a cyst pushing into a nerve in my spine that was 90% for certain causing the pain.  In April 2012, I had the cyst surgically removed.  The pain down the right side of my leg went away.  But, by June 2012, a new pain in my legs replaced it.

This new pain was a dull muscle ache.  My legs felt like I had just run five miles and felt oxygen starved.  Then, the tingling in my feet and legs started.  I hurt my back in October 2012 and had to stop going to the gym.  I went back in December 2012 but then had to stop again.  I had trouble walking any distance.  I began to use a cane on the bad days.

I launched into the What's Wrong with My Body department.  No doctors had a clue.  I began the treatment search.  

"Have you tried acupuncture?"  The most famous line folks with neurological problems hear.

"Yes."

"Massage?"

"Yes."

"PT?"

"At least three different practitioners."

"Naturopath?"

"Yes."

"Diet change?  Go off gluten, dairy, sugar?  Eat lots of green vegetables?"

"Yes, as much as I am capable of."  I know I never really put my back into the diet thing but often I can barely stand to eat as it is.

My symptoms worsened.  Some days, it involved my arms and pain in my hands.  But, it would ebb and flow.  Some days, it would reach the point of pain where I would freak out thinking my life was on this terrible decline into major disability.  Then, I would get better for a few weeks before going through another period of difficulty moving and walking.

I love to walk with the dog.  One of my measures is, "Can I walk the dog?"  Sometimes, I would walk easier and farther.  Hope would spring up.  Then, one evening, my body would tingle from head to toe.  Tingling maybe a misnomer.  It is actually more like laying there while electrical shocks are running through my body.  I would lie in bed hoping it would go away and wake up far more mobility impaired than I had felt the day before.  What one might call a relapse or a flare.  (It would be better if it was a flair.)

For awhile, I just called it, "No Walkus."  This was taken from the idea that what if a doctor couldn't diagnose a broken leg or sprained ankle or some other mobility thing and would just tell a person that it was "No Walkus"?  They l couldn't identify the problem but for sure the person couldn't walk worth shit.  Hopefully, it would just get better. 

On to more neurologists..."What is it?"  

"Peripheral neuropathy."

"MS?"

"Fibromyalgia?"

"Vitamin deficiency?"

"Lyme disease?"

"Was it all the toxins I was exposed to in the 60's and 70's growing up in my grandparent's service station?"  No clue.

Finally, I woke up with such a bad day that I couldn't walk and broke out the wheelchair.  I rolled into the neurologist's office who is now off my list forever.  He said it's not this or not that.  But, "Don't give into the pain."  

"What the fuck?  Do you even know me?  Do you even know my history?"  I thought.  I was flabbergasted.  Telling me not to give into the pain was like telling Einstein not to give into his stupidity.  That is NOT the problem.  I had to use the wheelchair for three weeks during that period.  I know it is a useful tool but I hate being limited to wheelchair use.  Gradually, I worked up to two canes and back to one.

During one procedure, the nurse asked me if I had fallen in the last six months.  I laughed, "Are you kidding?  I fall every other month."

A visit with a rheumatologist.  "Not really Fibromyalgia.  Eat better and keep moving."

Symptoms piled on symptoms.  Loss of fine motor skills.  Loss of feeling in my feet.  Loss of strength in my legs and hands.  

I spend part of my life looking for mobility aids to make things easier.  I now have:

- Three canes, a walker, and two wheelchairs.

- A disabled person's license plate.  (I will not drive with one of those damn placards hanging down all the time!  It's a safety hazard.)

- My cell phone has a ribbon tucked into the case for the back of my hand when I'm holding it so I won't drop it all the time.

- The major jars I have to unscrew all have thick rubber bands around their lids.

- A zero gravity living room recliner which keeps life from being total hell. 

- A sit/stand desk at work.

- A tablet and a keyboard at work for taking notes.

I drag my mind back from what might be in my future.  I am a great typist, and I write. Will I have to adapt to another way of writing?

My mother always dressed us in white.  She loved to tell the story, "Joceile is so neat that she can eat a chocolate ice cream cone and not spill a drop on her clothes or her clean white tennis shoes."  Oooh.  Ahhh.  Not anymore, Mom.

I was athletic until my first bout of mobility issues.  In racquetball, the teacher observed me play and shook his head saying, "You play with finesse."  He knew it wasn't that I was so skilled. I could just fake it.  My partner says I was unconsciously graceful.  It's gone for now.

At first, when my partner and I played catch with our baseball gloves, it was funny.  I stopped being able to reliably let go of the ball.  Sometimes, I would let go too late and the ball would go straight up in the air.  I would cover my head, and both of us would run for cover.  Now, I can't hit a garbage can when I'm dropping something from straight above it.

During one of my treatment regimes, I had a great time for six weeks going to a hyperbaric chamber which increased my body's oxygen intake.  I made great strides in walking and decreased pain until it stopped working for me.  Crap!

Finally, after two spots showed up on my MRI, I really began to believe I had relapsing and remitting MS.  Two neurologists said, "Yes, but get a second opinion."  

I finally landed at the Swedish MS Center in Seattle with one of the best MS specialists in the region.  He reviewed all of my records and my carefully completed ten page questionnaire.  My partner and I waited impatiently in his office.  He came in and said, "I can say for certain you don't have MS."  He went on to say that if I had symptoms like this for as long as I had experienced with MS my MRI brain exam would look like Swiss cheese which it does not.

This actually made sense to me.  So, I asked what he thought was the problem.  Brilliantly, he said, "I believe you have nerve damage of unknown origin."  My partner and I looked at each other.

"Well, of course, that is great news.  But, what caused the nerve damage?"  No clue.  We walked out of there chanting "NDUO.  NDUO."  Nerve damage of unknown origin.  "What the fuck does that mean?"

What it does mean is it seems to be gradually getting worse.  Like a feather slowly falling to the ground on a light breeze.  Back and forth, up and down, slowly, inexorably falling to the ground.  Not there yet, little feather, keep floating as long as you can.

And that's where it lies.  I spend my time appreciating the life I have now.  I am mentally healthy.  My partner and I are reaping the relationship benefits of 30 years of hard work.  We live on a lake in a beautiful part of the country.  We have successful careers.  We pinch ourselves daily at how lucky we are to have such a good life.  

I work really hard to stay in the here and now and not try to divine the future.  No clue as to what NDUO may lead to.  But, right now, I'm lucky for every moment, every act of love and kindness, every understanding of where my life could have led but didn't.

Sometimes, my partner worries about me, and my daughter worries about me.  After reading this, you maybe worried too.  But, don't be.  I keep plugging along, because I Don't Give Into the Pain.

I love my partner, my daughter, my dog, my job, my heart, and my passion for life.  There is nothing else to dwell on today.  I don't own the future.  We can all only take it as it comes.

To life.  

L'Chaim.

8/13/16

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