May 1, 2009


one step forward, two steps backward"
is the saying often used to describe the journey of battling Lyme disease.

the minute you feel like you are starting to make progress is about the time you end up excruciatingly sick again. the minute you think you have finally bid farewell to a nasty symptom, is the time that it chooses to rear its ugly head again. or within minutes of feeling like you are able, the cold hard reality of attempting to do becomes your undoing.

yup, enduring the natural ebb and flow of this disease is probably the hardest and most brutal emotional roller coaster to endure.

however i think i've stepped into a new era.
one step forward, ONLY 1.5 steps back.

i am making progress.

thinking that
saying that
feeling that
sharing that
absolutely terrifies me

i had started this blog entry the day before i ended up being sent to hospital. i guess that helps to explain what i meant by saying that seeing, thinking, feeling, sharing that i am making progress terrifies me.

you can go from thinking you are seeing the tiniest snippet of light at the end of this deep, dark tunnel of horrors only to have it cruelly and acutely snatched away in the blink of an eye. only to be left feeling as if all the clawing and digging in the world will never give way to permanent light.

progress is a matter of perspective
and aside from the drama of the last 2 weeks

i AM making progress

while most of my days are still low functioning - meaning that a good portion of most days is spent on the couch and herxing still leaves me bedridden and debilitated for days or weeks at a time.

however the quality of my low functioning days is better. meaning i am in less pain and most of my symptoms are less intense. even the days or weeks that i am herxing are more bearable and less insane to endure.

that is huge.
progress is a matter of perspective.

the big thing is that i am getting about 5 days per month that are 'good' days...insanely good. i have even had 6 MOMENTS where i forgot that i was sick.

6 glorious fragments of time where Lyme ceased to exist in my mind.

forget it

so while i still spend a huge portion of each and every day in the prone position on my convalescing couch, i can honestly say my quality of convalescing is significantly improved. and while the quantity of 'good' days has not grown, the quality of those couple of good days per month has sky rocketed!
and i am starting to be able to do things i have not been able to do for the past 3 years.

this is huge.
this is progress.

here's some of my progress in the last 2 months:

roughly about 6 weeks ago i had a 'physically well' day, so i went for a little walk around the block - you know get some fresh air, clear my head
imagine my surprise when i went home to the WRONG house
obviously it wasn't a 'mentally well' day

however, progress is a matter of perspective

as i dazedly tried to navigate my way to the right house, i realized that i had actually walked ON the sidewalk for the entire block - wasn't so long ago that i
had to walk on the road because walking on the 'hilly terrain' of sidewalks made me feel like i was climbing Kilimanjaro and the 'driveway dips' exacerbated the arthritis in my knees something fierce.

again, progress is a matter of perspective

recently i set out for my first walk around the park by our house.
more accurately, i set out for a walk with the purpose of doing it for exercise -
that was huge

the first time i was able to walk around the entire park, i cried.

who cares that i had 2 pregnant women lap me whilst doing it.
alright, in all honesty, i cared
it bugged me to have them breeze on by while i huffed and puffed my way around
after all, i used to run 10km every day

to soothe my bruised ego, i quietly, secretly, in my head, yelled after them,
"oh yeah, think you are all that, huh? lapping the skinny, jiggly chick? well just so you know, i was at the gym working out the day before i gave birth to my 3rd child!"

again, progress is a matter of perspective.
(and yes, skinny people do to have jiggly bits!)

the first time i made it around the park TWICE in a row...well, i actually wasn't brain misfired and i couldn't remember if i had actually gone around once or twice
but it's the thought that counts, right?

again, progress is a matter of perspective.

not too long ago, i walked 3 blocks to our local library with Avery and Parker. this was not a new feat however i wasn't miserable and in agonizing pain when we arrived. and the fact that i didn't feel as if i could keel over at any minute was new. it was a heady experience.

again, progress is a matter of perspective.

in fact, i actually felt so well, that as Avery perused the Dora DVDs, i checked out the exercise videos and brazenly thought, " i think i feel well enough to attempt that" - and i picked out a beginner exercise DVD called, "10 minute Workouts for Dummies".

Avery asked me what movie i had. when i told her it was a beginner excercise DVD for dummies, she graciously patted my arm and said,

"oh mommy, you're not a dummy. you just have lyme disease."
so poignant. so touching. so funny. so ironic.

again, progress is a matter of perspective.

never mind that a few minutes later i was hit so hard with an avalanche of symptoms that i had to call graham to come and pick us up. i sat there aching and twitching, thinking i was really dumb to even think a little fitness was possible - until i realized... the fact that i had even THOUGHT that i could do it was hugely remarkable!!!

again, progress is a matter of perspective.

and you know what? i owe the library 3 weeks worth of overdue charges...and not just because i forgot to keep re-newing it....but because i determinedly and stubbornly kept that DVD at home until i did it.
yes, i finally did it!

the entire 5 minute warm up section!

again, progress is a matter of perspective.

and this dummy, this ditzy, topsy-turvy gal is winning her war on Lyme

1 comment:

Renee said...

How exciting for you Shannon. I dream of some day being able to dance again~ more than 30 seconds on a chair! But 30 seconds is 30 seconds!
Your post helped me to put things into perspective as I have been very discouraged by my bad relapse( due to a family death) and set back when I went off the Doxy. I need to look at it with the glass half full like you do....I learn so much from your posts. God has nudged me once again about my thinking with your honest post.
Bless you! And you go girl with the walking and exercise. WOW!!