It's a Marathon not a Sprint ~ Living and Loving Life with Lyme

Wow, I had some really rough days!  At first I thought my medicine wasn't working because I wasn't experiencing a change in symptoms, good or bad.

  And then it hit...........................................

I quickly learned first hand what it meant to Herx.  I was having focal seizures multiple times a day.  I was unable to leave the house.  The simple act of riding in the car was torturous.  I would pull a thick hat down over my eyes because sunglasses weren't enough to block out the sun which hurt my eyes in a way I had never before experienced.  Even with my eyes covered, the motion of the vehicle was something I couldn't tolerate.  I have never experienced motion sickness to this extent, and I hope I never feel that way again. Sound and movement were also difficult to handle.  I couldn't block noise out, and everything felt louder then I'm sure it was.  There were days I hid in my room just so I could control the environment for light and sound.  I couldn't read.  I couldn't watch tv.  My only outlet was brief excursions to facebook from my phone.

The most severe symptom was my startle reflex being out of control. Sometimes just one of my daughters walking down the hall into my line of vision would cause me to scream as if they had jumped out of the dark to scare me.  I think they were often just as startled by my screaming as I was by their sudden appearance. The slightest unexpected noise would trigger a seizure.  I love my family, we can make a joke out of anything.  My daughter would burp and I would respond with a focal seizure.  During these types of seizures you are aware of what is going on, you just don't have control over what your body is doing.  With me, I make a yelling noise and my arms fling up over my head.  Only in my house would my children start laughing at this, and of course, as I'm seizing, I'm snickering as well.  I'm not sure if my dog was worried or thought I was playing.  He would jump in my lap and dig at my hand trying to get me to respond.  Sometimes my seizures were so bad that afterwards I would be unable to speak or move.  I would just stare blankly at the wall wondering when I would feel normal again.

This lasted for about a month, then something wonderful happened.  I realized I was beginning to feel better.  I would have a day, or a couple of days where I felt like doing things.  Granted, I was physically unable to do anything, but just having the desire to be productive was a huge improvement.  Gradually, my ability to watch tv returned.  I spent a week watching netflix all day.  Then, I found I could get on my laptop for brief periods of time.  I began this years book keeping. I placed ATA orders.  I worked on class plans and promotional projects.  Last week I decided to attempt to read a book.  I haven't been able to do this since August.  I have read six books this past week.

All of this is great, right?!  Yes and no, the difficult part for me now is that I am impatient to do more.  All of my good days are equally matched by bad days.  No, not as bad as when I was herxing, but still bad enough to make me not feel like getting out of bed.  Still bad enough that I was to tired to sit up straight, let alone do anything productive.  Mornings are the worse.  Thankfully my afternoons and evenings are usually an improvement.  My husband is currently in the difficult part of treatment and hasn't felt able to teach taekwondo.  I have been able to manage to get downstairs to our studio and teach a class or two from a chair.  Sometimes I had to rest all day just to have the energy to do that, but that's ok.  The brief hour I'm teaching is an hour when I feel like I am my old self.  I hang on to the memory of that hour to help me get through the days that I can't get out of bed.

I'm afraid I am in the long and difficult part of this journey.  The part where I have to remember I will get well.  I am alert enough to want to function in life like I use to.  I can envision myself getting up and folding laundry.  I can envision myself running errands downtown.  I can envision myself helping out at my daughters school.  Unfortunately, when I try to make my body do what my mind is envisioning it doing, I am quickly reminded that I'm home on disability for a reason.  Sometimes the joy of being able to walk further distances then I was able to a few weeks ago isn't enough for me.  I want more.

So here's the truth.  I'm lonely.  I'm bored.  I'm frustrated with things from feeling trapped in my home to knowing how much weight I'm gaining.  That could be a whole blog in itself!  Geesh, when I do get an opportunity to leave the house, none of my clothes fit.  Facebook use to help me feel like I was part of the world, but lately it is just a painful reminder that everyone's lives are going on while I'm stuck in this rut.

The worst part of this illness is there is no time line.  I can make goals, but I have little control over whether or not I will meet those goals. I'd like to be out and about by summer.  I'd like to return to work next fall.  Realistically, I may have to go another whole year of this before I am able to even begin to do the things I want to do.  I am hopeful, I need hope or I'd go crazy.  The truth is I AM improving.  I am improving surprisingly fast.  As long as I don't plateau functioning by summer may actually happen.  There is just no way to know.

So, I hang on to small milestones.

It was a joy on Thursday when I had an appointment with my primary care physician.  She hadn't seen me since I started treatment. I was able to walk into the office, sit up straight in a chair, and have a conversation without uncontrolled muscle movements.  She was ecstatic!   For her, not seeing me for almost three months, the change was HUGE!  I realized how far I had come so far in my recovery.  It helped me not to be down on myself for having a week where I couldn't do housework because I needed to save my energy for teaching.  Three months ago I couldn't even get down my stairs.

So, it's a marathon, not a sprint and I have the endurance needed to win this race.