Thursday, April 11, 2013

I'm So Tired

I'm so tired, I haven't slept a wink
I'm so tired, my mind is on the blink
I wonder should I get up and fix myself a drink
No, no, no.

I'm so tired I don't know what to do
I'm so tired my mind is set on you
I wonder should I call you but I know what you would do

You'd say I'm putting you on
But it's no joke, it's doing me harm
You know I can't sleep, I can't stop my brain
You know it's three weeks, I'm going insane
You know I'd give you everything I've got
for a little peace of mind

A few definitions:
Pompe Disease = Pompe disease is a rare inherited neuromuscular disorder that causes progressive muscle weakness in people of all ages.

Mononucleosis = a common illness that can leave you feeling tired and weak for weeks or months.

Pompe + Mononucleosis = A nasty mix which leaves you with just one thing to say ... I'm So Tired!

Back in December 2009 I first mentioned Mononucleosis in the post The Long and Winding Road to Diagnosis which outlined Maddie's diagnoses with Pompe.  As a reminder... "In May 2009 Donna noticed Maddie was losing some hair so took her to the pediatrician who ran blood tests to see if she had a thyroid problem, mono, or another issue that might be linked to hair loss."

At that time mono was ruled out as her blood tests showed she had already had it when she was young girl.  It was then that I first learned that mono was more than a kissing disease.  It is typically spread via saliva so one could get it through sharing drinking glasses, eating utensils, and even toothbrushes.  At the time we did not know Maddie had mono because the symptoms were similar to the aches and pains of a cold and she likely spent the days just relaxing like a little one usually does.  We also had no idea that mono + Pompe would return and would pack a punch.

In late 2012 we noticed Emma was moving a bit slower than normal, complaining about being tired, and wanting to take some time off school.  Now Emma is many things, but a complainer and slacker aren't among them.  I've often marveled at her ability to manage through stress and strife with a smile on her face and a quiet confidence, so when she started to complain we paid attention and made a doctor appointment.

When we arrived at the doctor Emma explained that she was run down, achy, nursing a low fever, and struggling to get through her day without wanting to nap.  As the symptoms could cover a wide variety of things, Emma was run through the usual battery of tests for the flu, strep, sinus infection, and even bronchitis.  All came up negative, but assuming it was an infection of some type we were given a prescription for antibiotics, told to head home, check back in a few more days. 

Those few days past, Emma finished her meds, but there was no progress so we returned to the doctor and asked for help.  Then, he introduced a new idea.  What about mono?  The nurse's daughter had just gone through a long bout with it and though not common, it seemed to be going around.  While it was good to hear we might have a diagnosis, it wasn't too promising for a girl with a muscle disease.  It was guaranteed to last a long time and take everything out of her.  There were no antibiotics and no magic pill to take.  You just had to wait it out.  We left with a scrip for a blood test and hope that mono was not coming to visit.

The diagnostic test results were clear... 100% positive for mono.  It didn't take long for us to notice a decline much more severe than we expected.  She stopped making it to school, sleep most of the day, became weaker, and slowly depression set in.  There were days she could barely make it up the stairs and lacked the strength to get out of the car.  There were others that she stayed in her room all day and all night trying to stay positive, but so exhausted she couldn't leave her bed.  

As you can imagine, this became very scary for Donna and I as we wondered how long it would take for her to get better and if her weeks missed from school might jeopardize graduation.  A quick call to her muscular neurologist set us straight.  We were told a muscle disease (aka Pompe) + mono was one of the worst combinations one could have.  Her body was already weak from the Pompe and the exhaustion plus lack of movement was only making it worse.  Our expectations of Emma regaining her strength in weeks was misguided.  She would not feel better in time for spring.  In fact, she might not feel better until college!  

This seemed a bit extreme to me, but our specialist reminded us how long it took Emma to recover from our trip to London.  While busy days at the Olympics and crossing the London Tube left the rest of us a bit achy, Emma was exhausted and overwhelmed.  By the end of the trip, she struggled to keep moving, and by the time we got home she spent days upon days in bed trying to recover.  It was then that we learned that while our bodies walked three miles her's felt like she ran a marathon. 

So, after receiving a medical release for her missed school, Emma  settled in for the long haul and focused not on feeling ill, but on feeling better.  Day by day she looked for the positive.  Emma showed her maturity by staying in touch with her specialists and following their recommendations to eat well and stay active so muscle atrophy would not cause long term problems.  So a couple times a week, she got dressed with her best workout clothes and braved an exhausting five minute walk on the treadmill.  It still seems crazy, but that's all she could do.

This week she's returning to school full time and we're starting to recognize our old Emma again.  That familiar smile has returned, that laugh is back in the house, and she's off in the car to rekindle friendships that took a backseat to mono.  We are relieved to see our daughter back and she seems relieved to be feeling a bit better.  Most importantly, she's up in the morning, putting a smile on her face, taking on life and no longer saying ...

     I'm so tired!

Now that's a reason to celebrate!

Credit to: The Beatles, "I'm So Tired"