Late Night Chats With MS

Fellow insomniacs, is it just me, or do the inner conversations go something like this:

Sleeping me:  zzzzzzzzzzzzzzzz
ms:  hey...
Restless me:  hmph
ms:  you awake?
Tossing me:  No, let me sleep
ms:  you gotta pee
Staggering me:  Ugh...ok, thanks for the heads up 

:::maneuver through dark house to bathroom, duty done, stagger back to bed:::

*rinse and repeat the above conversation a minimum of 3 more times before morning alarm goes off.*

Semi-conscious me:  zzzzz, eye blinks, zzzzz
ms:  I'm bored
Restless me:  ms, go to bed.  It's 3am
ms:  did you set up that epay on the electric bill?
Tossing me:  Yes.  Now really, we've GOT to sleep.  We have a long day tomorrow.
ms:  tomorrow is today, silly!  C'mon, get up and play with me.  The night is young!
Turning me:  ms.  Seriously.  Bed.  Now.

:::tick.............tock...................tick......................................tock:::

Tossing me, wondering to myself..."did I set that epay up?" 
ms:  OOOOH I heard that!  Let's go down to the computer and see!  C'mon c'mon c'mon! 
Awake me, after verifying via netbanking acct that the power will, in fact, be on at 8am:  see, told you I did it.  Alright, let's go back to bed.
ms:  I'm thirsty.  Got any coffee?
me:  We cannot drink coffee at what is now 4am.  We're going back to bed and that's that!  Long day ahead.  Remember?
ms:  ok ok...let's go back to bed.  Just like you asked.  This is me, workin' with you;-)

me:::feeling something crawling on my foot:::rubbing opposite foot over that spot:::nothing there.  Then feeling something crawling on my face:::rubbing hand on face:::nothing there.

"MS!"

ms:  what!  I couldn't help myself...I just loooooove youuuuuuuuu...
me:  Mm hmm.  Okay, so what do you want to do at what is now 5am?
ms:  can we go downstairs and have coffee now?
me:  Yep.  And hey, betcha we can catch the sunrise!
ms:  that's the spirit!  C'mon then, let's go! 

So I took ms out to the front porch for coffee.  Initially, I wanted to cry.  I really do have a long day ahead.  I started off worrying about what today might look like on just a few hours of sleep.  The answer?  Probably a lot like every other day I've gotten through with just a few hours of sleep.

But I found the positive...this morning's sky was quite beautiful.  Hopefully, you all slept through it:-)

Fred - My "Service Basset"

I went to a seminar yesterday for my work and saw the sweetest yellow lab laying on the floor next to one of the fellow educators in attendance.  So what did I do?  Knelt down, playfully rubbed her ears and proceeded to tell her what a pretty girl she was.  I felt a hush come over the room.  Turns out...you're not supposed to pet these dogs. 

Whoopsie?

I apologized and the woman, who happened to not only be a fellow educator, but a service dog trainer, tried her best to show me kindness.  She said, "oh that's alright.  People don't understand the rules.  While she is working, she is not to be acknowledged."

As I sat there in the seminar, only able to pay approximately 3% attention to the instructor (don't worry, bosses...I totally got every bit of the material!  True story!) , I couldn't help but wonder...would I ever come to need a service dog?  On my hour-long drive home, I called my husband to tell him of my blunder and also of my What If Game thought.  His response?  "You already have one of those.  Fred!"

Fred.  The bane of my existence.  The most mischievous, conniving dog I've owned in all of my 39 years.  Could it be that my husband is correct in that he provides a service to me?  Let's take a walk through that together, shall we?

Baby Fred - so cute, so misleading

Service:  assisting me with eating
*since I have intermittent hand tremors, it works to his advantage

Service:  blocking me from potential stove injury
*the chairs are blocking him from the cabinet his dog food is in, as well as our pantry.  He opens doors.

Service:  taking care of a sick child
*what you don't see is the plate of toast on said child's tray table



Service:  caring for sick child #2
*no food involved - just sheer comfort...at the expense of sick child



Service:  holding down "Christmas Snuggie"
*just so everyone understands, this was MY gift...which he stole

I attempt to take Christmas Snuggie from Fred...



...but he throws it to the floor, lays on it, and licks it
Christmas Snuggie is now "Freddy Snuggie"



Relaxing by the fire in the chiminea, which my husband made...for him.
*yes, he dismantled each of the patio chairs (except for the one he's laying on)

Service:  finding all of the painters tape in the house
*and subsequently chewing it up

Service:  making me feel as if naps are not only acceptable, but necessary:-)
*this is a service I can appreciate!

...enjoying a sip of my husband's coffee
*he'll need to be alert to deal with me all day

Service:  guarding the house and its occupants
*because no one messes with a dog who sits on the coffee table

Service:  assisting me with climbing the stairs
*False.  He is afraid of descending and will not unless someone stands at the bottom, reassuring him that it's okay.

Obviously, caring for me takes a toll

Yes, my husband is right.  Fred is my service dog.  Like when he rips the house apart and tosses shredded paper and sandwich bags all around the living room?  My husband says, "oh honey, he's just helping you to stay active."  When he wedges himself into my back while I sleep?  "Oh honey, he's just trying to keep you warm."  And when he gets a 5 gallon drink of water, walks over to me, opens his mouth, and allows the 2 gallons he didn't swallow to pour onto my feet?  "Oh honey, he's just trying to keep you cool.  You did look a bit overheated..."

Try as I may to convince my husband that this dog and I dislike one another...the old phrase, "a picture is worth 1,000 words" rings true. 







5k a Day - Isn't Showing Me The Love

My "5k a Day" mantra?  Is backfiring.  Or maybe "misfiring" would be a more accurate description.

Nerve pain buzzing around in an aggressive pattern throughout my shins and calves.  Bottoms of feet feel crampy.  Yes, I was sure "crampy" would come up on spell check, and it did not disappoint.  This is me...rewriting the dictionary since the late 70's.  Miriam Webster?  You're welcome.

When I decided to push through the pain-to-numbness to complete the walk, I wasn't quite halfway through before I traded the typical "heel-toe" walking pattern for the "Mr Heavy Foot (shameless Kids In The Hall reference) shlushy stiff pattern".  Shlushy?  Again, MW...you're welcome.  To make matters worse, my bladder was shouting "release the hounds!"  And then I began to have an audible discussion with ms that went something like this:

me:  "I'm going to finish this walk and I'm going to do it every day.  I'm used to pain.  Remember back in college when I ran several miles in my goalie gear?  And I was in so much pain that my hair hurt?  I finished."
ms, interrupting (hate when it does that):  "mm hmm, and you threw up a minimum of 5x.  Go on."
me:  "remember when I played that game on torn cartilage?  I'm tough if you haven't noticed."
ms:  "this isn't the same kind of pain you used to feel as an athlete.  This is nerve pain, tough girl."
me:  "I've also given birth.  Twice.  And had kidney stones.  Clearly, you underestimate me."
ms:  "I'm about to turn the volume up a bit, meaning you're probably gonna fall.  Consider this a heads up."
me:  "so?  Like that's never happened before.  Try again.  This is me, still walkin'."  :::right foot shlush, left foot shlush:::
ms:  "oh, and you're probably gonna wet yourself."
me:  "rinse and repeat the 'you're gonna fall' discussion, ms.  I have a washing machine for my shorts."
ms:  "nice.  You're all lady."
me:  "always have been;-)"

I made it home by the grace of God and threw myself into the sofa, where I awaited the rush of prickly, stinging pain to replace the numb and tingling electrical short circuitry. 

Confession time.  It was there, on the sofa in fetal position, that I allowed a spirit of sadness, self pity, and fear come over me.  Sadness, because all I wanted to do was get back into some form of shape...trading my sphere in for something more flattering.  Like a cone.  Self pity, because it's times like that when I recall what I used to be.  And I miss my husband, because he's had to take on even more hours to offset those which I've had to cut back on.  I feel like it's all my fault.  Fear, because hey...I was afraid.  "Tina, come on down!  You're the next contestant on The What If Game!"

Later that night, my son and I decided to stay up late (like mother like son) and listen to music.  Typically, we go on youtube, pick random songs, and get shushed by the normal sleepers of the house;-)  He chose one called, "You've Got The Love" by Florence & The Machine.  And, well...I can't stop listening to it.  Impeccable timing, my dear son.  Allow me to share my new walking song with the class:-)

Time to realize Who's really in charge...

 

Deep Thoughts of Friday Morning. Counting Blessings :-)

Ah yes...Friday morning.  I sort of have a particular order of business each week that goes something like - get the coffee on, get the eggs scrambled, turn on the magical rectangular box of light (computer), log onto netbanking, configure the bills, pet the dogs, wake the kids, and attack the day.  But today, I slowed down a bit to do what I really should be doing each and every day.  Counting blessings:-) 

So here's my list du jour:

Friday morning...

• A time to bank online - and give praise to the Lord for His provisions.
• A time to drink of the Dunkin' Donuts coffee from a mug specially gifted to me by a dear friend - and to give praise to the Lord for surrounding me in love.
• A time to mentally prepare for my 5th consecutive "5k a Day" walk - and give praise to the Lord for this week's level of function, as well as the makers of aspirin and ibuprofen.
• A time to admit that I'd rather feel muscular pain than numbness or vibration - and give praise to the Lord for that, too:-)
• A time to give thanks that I didn't fall face down on the road...yet...when vertigo has visited about halfway through my walks.  I suppose those silly field hockey relay races, when we'd put our foreheads on our sticks, run around them in circles, then attempt to run a straight line have come in handy after 20yrs.  Who knew I'd actually benefit from my uncanny ability to run a fairly straight line?  Oh well.  I'll just give praise to the Lord for that, too.  Can't go wrong!  Ha!

And now...I'm about to get all deep-like.

• A time to notice the flicker of shine from my wedding ring - and give praise to the Lord for His patience and faithfulness.  'Cause it took us awhile to really "get it";-)
• A time to call the man who placed that ring on my finger some 17yrs ago and thank him for his hard work, his love of our family, and his care for me.  (Note to self...attempting to communicate that at 1am results only in grunting and hand flicking.  Not everyone experiences difficulties getting to or maintaining sleep:-)
• A time to peek in on those peacefully sleeping kids - and give praise to the Lord for all that they are.  And to pray my daily prayer, which is for the Lord's "hedge of protection" over them and for their good health. 
• A time to give thanks for my parents, grandmother, and cousins - who love me unconditionally.
• A time to pray over my friends - for their health and safety.
• A time to pray over everyone living with chronic disease, that they might be comforted and strengthened on a daily basis.  And to know that they are loved deeply.

...and the biggest one of all...

• A time to give thanks for another day of life :-)

So it seems as if I've drank of the coffee, configured the bills, and woke the kids by staring at them - earning them yet another future therapy copay.  I've counted some of my many blessings, I've prayed my prayers, and I've both pet and yelled at the dogs.  Hey, the basset ate my eggs.  It had to be!  Now, it's time to throw on my toe scuffed sneakers, pop an aspirin, and head out for a walk...and give thanks for another day of life:-)

"5k a Day" Keeps MS Away...Maybe?

That's my new mantra. 

I woke on Monday morning with the desire to get back into walking.  I think spending the day at the Mud Run helped motivate me.  That and seeing the pictures of myself that different friends took.  How is it that an additional 5 lbs from last year at this time looks like 50?  And how did I look thinner in one picture and a lot like a contestant from Biggest Loser in another?  Regardless, I knew it was time to take action.  That or confiscate the cameras that magnified me, thereby only allowing my image to be captured by more flattering equipment. 

Ugh, hold on.  There's a mosquito literally the size of a helicopter on the wall and I can't concentrate...you know it's bad when the cats won't approach it. 

...there.  Anyway, I set out to walk my previously familiar course of 3.4 miles.  I was a little less than halfway down the road (.25mi) when my legs began to tingle and go numb.  I thought about turning around and going back home, but I'm too stupid to stop when my body tells me to.  I continued on and, despite numbness in parts of my legs, other areas became quite painful.  I was soon feeling every step of that walk and my sneakers were taking the brunt of it, scuffed toe after scuffed toe.  But, by God's grace, I actually completed the entire course.  It took several hours for the numbness-followed-by-vibrating, popping, stinging sensations to go away, but I'm pleased to say that they did!  I woke up the following morning, got myself all dolled up to do that same walk (hair pulled up 'field hockey style', husband's giant t-shirt, ripped sweat shorts, loosely tied sneaks), and set out on the course.  I was amazed at how much farther I was able to walk before the numbness/pain/toe scuffs set in, and how much less time it took for appropriate sensations to return to my legs afterwards.  Today was Day 3, and I was nearly finished the course before my legs began to act up. 

Who knows how tomorrow will be or the days following.  That's part of the thrill of living with ms, right?  You never know.  What I do know is that I don't want to miss out on a day of function and appreciation of every blessing I have.  If that means dragging one foot in front of the other for an hour, stopping intermittently to stare at the beautiful sky and listening in as the birds place their bets as to how far I'll go before tripping, then I'm all in!

Hey, if nothing else, I could end up with a new pair of sneakers out of it all...


  

Taking MS Out Shopping (for undergarments...)

There are 2 things I completely despise shopping for:  bathing suits and undergarments.  Because I was pleasantly surprised to have found a bathing suit that essentially covered me from my armpits to my knees, thus covering most of my "problem areas", I thought I may also be equally surprised at how easy it would be to find replacement undergarments.  Nope.

All I found were lies.  C'mon, "age defying lift"?  "Satin fantasy"?  And "fits you perfectly floral"?  Lies.  All lies.  Because what I found could best be referred to as "age reminder smush", "satin nightmare", and "boa constrictor fit". 

Let me take a moment to apologize to all the men right now.  Sorry in advance, guys.  This post won't have much for ya...

I tried on over a dozen undergarments, none of which fit...and each requiring more and more Houdini efforts to get into, then out of, then into the next one.  I could feel myself tiring and thought, "you have to be kidding me.  I just walked 3 miles this morning and I can't try these things on without getting dizzy?"  I nearly fell into the wall upon escape from "age reminder smush".  It's more than a little embarrassing to have to "catch" yourself in a dressing room by throwing your elbow out to prevent facial impact, thereby creating a loud "THUD" into the thin wall.  Add to that visual - the petite sales girl coming to check on you by saying, "is everything alright?"  No, sweetie, it's not...but I shan't attempt to explain what it's like to take ms out shopping, exhaust yourself in a fitting room to the point where you can't see straight, can't think straight, and are forced to use your elbow like a kickstand in order to prevent the even-more-embarrassing face plant.  So what I said was, "yes, thank you".  Again, lies.

Two things became obvious to me:  1) I was going to have to order online, and  2) I can't take ms out shopping for undergarments ever again.  It just doesn't behave itself.  At all. 

Now if you'll excuse me, I have to attempt to measure myself and the only tool I have is my husband's metal retractable construction tape measure. 

Be well, friends!

We're Not Alone

I don't know about you, but there are times I can feel very lonely.  I can't really explain why, probably because it doesn't have a legit root cause.  It's just a feeling.  Feelings can be rough sometimes, right? 

Well, I got to feeling that way just the other night.  I accompanied a group of my BFFs to a big name sports tavern, where they were picking up their MS Mud Run registration packets.  I was having the time of my life when, all of the sudden, it hit me.  I have the very condition that this highly publicized run is for?  I didn't like that reality check, let me tell you.  While ms never lets me forget it's around, it's just not something I put much thought into on a regular basis.  I'm so much more than a woman with ms.  Plus, I have very little attention span.  But this was like the Groundhog Day movie, where I re-experienced the dx all over again.  Then I got mad at myself and began to argue.  It went like, "stop it, you've had this since '99.  You're out with your friends and you're eating crab fries.  What could be better?  This night will never happen exactly like this again.  Hey, is that cheese sauce?"  (seriously, it was)  Despite the gut check, I was overcome with loneliness in all its ugly.

The following morning, I received a text from my dear friend, Debbie.  I've written about her before, because she has a way of unwittingly pulling me out of the hole that ms pushes me into at times.  Her message read: "Jeremiah 29:11...just saying!  Let the Lord hold you in His arms!"  She also made a joke about spanx.  Come on, how could I stay in a spirit of "down" when I got a text with scripture and spanx?  I think the answer is clear.  I could not.  And joke as she may, I find that spanx work just fine, thank you very much...

Speaking of the Mud Run, I served as a volunteer at the finish line.  The job?  Cut the plastic chips off the runners' shoes. 

I stood in awe as hundreds of people poured into the park to take on the run.  Hundreds became thousands.  I came across several friends from high school, one of which created an entire team of ms supporters.  My name appears on their website as someone they walk/run/bike for.  As I saw them all gathering together for a team picture, I couldn't help but tear up a little.  They could've been sipping coffee from the comfort of their living rooms early on a Saturday morning, but they were out here getting ready to work their tails off...for people like me.  They gave me a warm welcome of handshakes and hugs. 

My spirit of gratitude continued to grow as I clipped chip after chip from the mud soaked shoes of each exhausted runner.  More often than not, they thanked me before I could thank them.  Our group leader made sure to keep a close eye on us by bringing our lunches over, checking in periodically to see that we were faring well, and providing extra chairs so that we could rest in moments of down time.  The conversations I had with other ms'ers were incredible.  And I'm not sure which runner started it or why, but I received the first muddy hug of the morning and probably 50 more until the day was through.  Out of those 50ish hugs, I knew only 2 people.  The runners, even those who finished injured, were not too tired to express their love and appreciation for us.  They realized that the very people they were running in support of?  Were there to support and serve them today.  As I sit here in recuperation, legs/knees/feet regaining feeling, the very thought of it all...the look in their eyes as we served them in our respective duties...is just overwhelming.

I came home caked in mud and wore it like a new piece of jewelry.  It was humbly received via huge, squeezy hugs from tons of folks I'd never met before, from old friends, and from those who support me on a frequent basis.  The mud washed away, but the incredible show of support and communicated prayers will always remain. 

If you've ever felt like we fight this alone, just picture 4,000 people...all gathered in a big park...covered in mud.  Now picture them all cheering, celebrating, and thanking...you.  That's what I had the blessing of witnessing today.  We are not alone.  Not even a little. 

Thank you, Lord, for surrounding us with such love and support:-)

BFFs - Before! (Debbie on the right:-)

 




BFFs - AFTER!

  





Soaking wet and muddy...ME:-)

Jeremiah 29:11  "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."





Doubt Stinks

I've been feeling rather anxious lately, ya know...in between really cool field trips with my kids and moments of stopping to smell the coffee.  No, roses.  That was supposed to be roses.  Anyway, lots of thoughts on my mind, darting back and forth, playing double dutch and hop scotch.  Something in my chest feels like a motor on full throttle, like the illustration of the rabbit on my lawn mower as opposed to the turtle.  I've always been intrigued by this.  I wonder who said, as they were assembling lawn tractors, "Hey!  Let's put symbols next to the throttle for folks, just in case they can't read the words 'high' and 'low', and let's make them animals!" to which another guy was all, "Oh my darn!  THAT is the best idea I have EVER heard!"  I think they could have at least put an animal in the middle.  Maybe a groundhog.  I like to ride around the yard on "groundhog", just because I feel like I'm conserving gas.  There I go again, skipping around...focus!  Focus!

I haven't slept well whatsoever.  Not that I haven't been tired, moreso that I haven't been able to remain asleep once I've climbed the mountain that is "trying".  Why?  Well, a dog barks, a husband flops around like a fish trying to get off the line, a cat jumps on my head, or a bladder calls.  This morning, one of the cats woke me by throwing up on my foot.  Eh, at least it was a new way to wake up.  When I'm tired...wait...when I'm *fugh-tigued*, because "tired" and "fatigued" are not the same to me, everything is magnified.  Everything.  Emotions, sense of myself in space, sense of others in my space, that guy's really high voice...everything.

I make decisions of all sizes every day, none of which roll around in my mind and cause me to question myself.  But I recently made one that's doing just that.  And the reason I made it in the way that I did?  Was because of ms.  Doubt is now playing over and over in my mind, because I don't know if I'm doing the right thing by planning around a condition that rarely feels the same way to me from day to day, week to week.  I'm trying to live smarter, which will sound very funny to those who know me.  I have a history of going pedal to metal until I hit the wall.  Hard.  So this was a moment where I thought that "groundhog" may be best. 

Stupid doubt.  Wish I hadn't misplaced that Magic 8 Ball from my junior high days.  Though with the scattered state of mind I'm often in, it would probably just keep coming up "concentrate and ask again".

Appreciating Every Moment :-)

My kids had a school trip to an amusement park today.  You know, I normally get a bit anxious about  trips like these, because it's not always easy to take ms out and about.  But today?  The weather was gorgeous - breezy, no humidity, 70s, and high UV rays to help me tap into that 5% of Native American I have in my ancestry.  In a word?  Perfection.

When we arrived at the park, I paused for a moment, closed my eyes, took a deep breath...aaahhhhh...and enjoyed the excited voices of my kids behind me.  I appreciated my life so much in that moment.  My kids are my everything and I knew that I had the entire day with them.  No work obligations, no demands that daily life calls for.  It was an incredible feeling!

I was uncharacteristically quiet today, taking several moments to appreciate every ounce of every single thing.  I mean, that's how I'd like to be on a daily basis...but the reality is, I don't always take the time to notice.  The sky was a brilliant shade of blue (thank you, Lord, for another day of sight).  I love the sound of my kids, laughing with their friends (thank you, Lord, for another day of hearing).  I'm having no trouble keeping up with my group in the park (thank you, Lord, for another day of mobility).  Toward the end of our day, we noticed a flash mob of ducklings that my son wanted to feed.  See?

...and I couldn't help but see marvelous beauty in it.  My son, gentle in spirit, carefully extending his hand in love...kinda like he does when I pull in from work each day.  He does this thing where he jogs to my car, opens my door and says, "got stuff to carry?"  Yeah, literally each day (thank you, Lord, for my kids).

I was incredibly, amazingly, ludicrously blessed by this day!  While it's not realistic to sit in the sun and stare at the wonder all around me each day, because come on...I don't want the guys coming for me with the custom buckle jacket, and I really need to do things like keep a job and care for my family...I don't ever want to forget how much I'm loved and cared for.  That love and care is in every detail. 

In the times I may feel lonely, these are the thoughts I need to try to focus on.  Or how about when I begin to feel the anvil of depression?  I want to be able to look around and know that, while those feelings feel quite real, they're not Truth.  Now if I can only remember to stop for a moment and just...look around. 

(thank you, Lord, for being in every detail:-)