Life In Small Bites

My husband and I have always been big bite people.  When we reorganized our books (this was back before children when we actually organized our books), we took all the books down off the shelves, organized them in stacks and rows around the house, and then reshelved them.  When I sewed my son a cat costume for Halloween a couple years ago, I started with fabric and ended with a costume complete with hem and zipper.  If there was only an hour of time to work on something, we’d decide it wasn’t even worth starting.

We’ve realized that to move on with our lives, we need to learn to work in small chunks.  This sounds pretty easy, but it actually requires a huge change in how we tackle anything.  Here was my husband’s previous work flow when doing a house project:

1. Wait until he had a full day to work on it.

2. Spend the first couple hours hunting for his tape measure, work gloves, spare saw blade, packet of hardware he bought, etc.

3. Start working.

4. Realize he didn’t have a vital piece and run to store to get it.  Come home and eat lunch.

5. Really get working.  Hit his groove mid afternoon.

6. Stay up until midnight.

This doesn’t work anymore.  I am doing well enough to manage the kids alone for about an hour or so.  In a crisis I can do more, but then we have the repercussions afterwards.  So for normal life, we need to count on hour long chunks (longer if the toddler is napping).  Using the previous system, nothing would ever get done because that hour would always be used hunting for the work gloves.  Now Hubby has to be in early enough to fix supper.  He does occasionally work on something until midnight, but only after he’s gotten the kids ready for bed.

So we’re learning.  We’ve had to learn to approach everything in a more organized fashion.  We have to have our projects always ready to go…if we have to hunt for something, our time is up.  We have to be ready to leave projects in a partially done state.  It’s honestly a vast improvement from the previous system and once we have it figured out I think I’ll count it as one of the benefits of stroke. But we’re still figuring it out.

Sensory Overload

I know I’m not the only one who suffers with this since my strokes, though it’s not something I ever expected or anyone involved in my care has ever asked about.  It’s gradually gotten better as I’ve recovered and as I’ve learned to manage it, but if I go beyond my limits or am fatigued, it’s completely unmanageable.  I’ll bet I’m not the only one to yell, “Shut up!” apparently out of the blue.  The people with me don’t realize that the curtain is swaying in the breeze, the dishwasher is whirring, there is a bird outside, and that voice, that voice is talking so fast and high and I can’t take it anymore!!!!

I usually don’t attend church (largely for the above reasons but also for others that I’ll discuss another time) but today I had to be there at the beginning to stand beside a woman making an announcement (I still actively volunteer).  No one sat still in their seats; they leaned to talk to each other, swayed, wiggled.  The pre-service chatter ebbed and flowed.  Then the music started.  Everything seems a little too loud when I’m overstimulated so this was REALLY LOUD.  The background on the lyrics for the music was moving, which to me was positively psychedelic.  The person behind me kept bumping into my chair.  The music was your typical “contemporary service” music with a heavy drum beat and people kept doing horrible things like waving their arms and bobbing their heads.  I was a wreck by the time I left, about ten minutes in to the service.

I’ve learned to monitor how much sensory input I’m getting and if I start getting that irritated, anxious, about to scream feeling, I pay close attention.  Would turning off the fan help?  Or turning off the radio?  Dimming the lights?  Walking into another room? I’ve also explained the problem to everyone close to me so they understand. But I know it sounds crazy and is hard to really, truly understand.

And then I found this video…it does an amazing job!  I had to look away during several parts because it made me more dizzy than I am already but it is so close to how the world actually looks…throbbing, spinning, and loud.

 

Do you struggle with sensory overload? How do you cope?

A New Beginning

I feel like this is my first spring since the strokes.  I wish I had the words to describe the profound difference between last year and this year while describing the profound difference between now and before the strokes.  I am still so limited.  But I can do things!  My brain still gets so overloaded sometimes.  But it recovers more quickly.

Last year, overdoing it would mean a week of recovery.  And it didn’t take much to overdo it.  This year, I can gently push myself.  And when I do overdo it (because I am the sort of person who doesn’t know my limits!) instead of falling or lying in bed, clinging to the bed, telling myself over and over again that I am not actually spinning, I feel somewhat dizzy and really snappy.  I don’t like this aspect of me now, but I’ve learned it’s common among stroke survivors.  When my brain gets tired, everything seems to be coming in too fast, too loud, too bright, and I snap at my kids, my husband, my dog, or (most often actually) my “stupid arm” and “stupid strokes”.

Be that as it may, it is spring and I’m out in the garden again.  I can walk over irregular surfaces like a pro with a really funny wide-based gait but without falling.  I started numerous batches of seeds indoors and I can transplant 8-10 seedlings before I have to stumble back inside to rest.  This is HUGE!  This is freedom.  I don’t have to wait for someone else to do it for me or just do one plant a day. Not only that, I haven’t killed a single seedling through clumsy handling (though I do have trouble getting them in the hole without mauling them somewhat).

Seeding is still a bit of an issue.  I’m starting everything from seeds…mostly leftover seeds from a couple years ago (stored in the fridge and still quite good).  I enjoy the process and can’t justify buying a plant for a few dollars when I can start a plant for pennies.  I have excruciating arm pain from the tension of trying to get just one bitty seed at a time.  I’ve found that starting everything indoors in some old disposable plastic cups with drainage holes punched in the bottom and then transplanting out is much easier for me than leaning over the bed trying to plant those annoyingly tiny seeds and then care for them outside during those care-intensive sprouting days.  Instead, I’ve claimed half the stovetop for trays of my seedlings. Broadcast seeding is also amusing…my mesclun is in little clumps instead of nicely spread over the bed.  But I am gardening!  We are on the way to the absolute most beautiful, productive garden I have ever planted.

It is also a huge relief to have a hobby again.  I used to be a very busy person and loved biking, scrapbooking, knitting, writing, gardening, and baking in particular, in addition to being the sole provider for the family and mom of two small ones.  My hubby has learned to bake.  The scrapbooks and knitting are languishing (though my son convinced me to start working on a sweater for him on huge needles with chunky yarn).  The blogging is nearly non-existent (as you know…sorry!)  The biking is still pretty limited (I made it up to 6 blocks away with my hubby and didn’t know if I’d make it back!)  But I can garden.  My brain has something fun to fiddle with in my spare moments.

What hobbies have you lost?  What hobbies have you reclaimed?  Do you have a garden?  If not, I highly recommend it!  Even a pot of chives in the window sill is lovely.

Today

I am sitting in my office finishing my work.  If someone didn’t know, they’d think I was just an average mom doing my normal stuff.  I could be anyone.  They don’t know that every time I tell the story of the last 16 months, I hear gasps.  They don’t know that while I look the same on the outside, I will never be the same on the inside.

But for others who are just starting on this path, I wanted you to know that whatever happens in the coming months and years, you can choose what you make of it.  No one else knows what you’re going through, what your priorities are, or what you need to do to get there.  Doctors may tell you the medical information, but they don’t know your particular path.  Other people may not encourage you to take care of yourself the way you need to.  Do it anyway.  Do what you need to do.  Create the meaning in your experiences.  Decide where you want to go on this new path.  You didn’t die so God still has some use for you here.  Start working toward that today.

I miss blogging and the “strokey” community.  Sometimes I feel like I’m masquerading in another world.  I can keep up appearances for a short while and then duck back home to rest.  But I know my life isn’t like other people’s.

Last year I wrote a lot trying to process what happened.  I miss the writing.  I still have a lot I want to say.  But until someone pays me a living wage to sit and write, I’m going to have to focus in other areas.  I hope to stop back in once and awhile for an update.  My kids are growing so I may find more time there as well someday.  My son (3 years old when I stroked) is attending Kindergarten Round Up on Friday.  My daughter is almost 2 now and insists on doing everything herself.  We’ve all gotten so used to the new normal, that sometimes we forget that it isn’t normal.

Hope you all are doing well.

Happy New Year

Happy New Year to all!
Many who read this blog have had an unfortunate medical surprise last year. We’re all hoping for this year to be better. In writing my resolutions, I noticed they could be anyone’s. Many of them are specifically written in response to stroke symptoms but standing alone, they look pretty normal. Here they are:
When I bike home from work, I will gradually increase my distance by taking longer and longer detours.
When I am tempted to deviate from the schedule, I will choose the schedule over my impulse.
I will say no to more obligations out in the world and at home and yes to assistance.
When I am sitting idle I will knit as long as my hand will let me.
When I am tempted to yell, I will take a time out and do something I enjoy.

What are your resolutions this year?

Feed the Meter

I’m struggling with how to express my thoughts.

I wish I was keeping up with my blog.  I wish I was keeping up with relatives and friends.  I wish I could adequately thank the Stroke Center for all they’ve done for me.  I wish I didn’t always feel so far behind.

Every day I get 100 tokens.  It takes 1 token an hour to survive (asleep in bed).  It takes about 25 tokens an hour to go to church or physical therapy or go to a potluck or drive a car (or ride a bus or bike or even ride in a car…moving vehicles are not my thing) .  It takes about 20 tokens an hour to go to work.  It takes about 10 tokens an hour to shower or brush my hair or do other self-care or to do low-grade stuff with my kids (facilitate them doing artwork, watch while they play, put them to bed, read them a story).  It takes 5 tokens an hour to eat.  It takes 2 tokens an hour to lie on the couch doing nothing.

When I did PT, I would use 50-75 tokens just to do PT.  That would leave enough tokens for the rest of the day to use 1-2 an hour.  When I go to work, I use 40-60 tokens just to go to work, again leaving only 2-3 an hour for the rest of the day.

When I first had my stroke, I did nothing except PT, work, and lie on the couch (expending a few extra tokens to blog while lying on the couch).  That’s all I had tokens for.  That was fine for awhile.  But now I’m looking at my life for the long haul.  And I’m sick and tired of having to pay for everything I do.  I used to live my life freely, certainly facing the consequences if I had too much on my plate, but generally being able to use my time as I wanted.  Now there’s a meter always running, demanding that I pay up.  expired-meter

What happens if I don’t pay?  What happens if I run out of tokens?  My arm floats away from me; I fall; I can’t sleep and lie awake spinning uncontrollably; I cling to the bed to try to try to gain some stability; I feel through-the-roof anxiety; I feel a random but intense desire to die.  So I’ve learned.  Save enough to pay the meter.  There is no free parking.

There was a lot of flooding here in Colorado recently…some people had almost no warning to grab their most precious possessions (perhaps just a pet or a child) and get out.

What would you grab?

With the stroke, I at least have the privilege of changing my mind about what to grab.  Those first few months, I grabbed my recovery first and my job second. People from different facets of my life have been contacting me wondering when I’m coming back or why I’m not around or not blogging.  It comes down to what I would grab in a fire or a flood.  Like most moms, I’d grab my kids.  If I lost every item I owned but still had my family, I’d be okay.  But I’ve had to jettison many people and activities that I value in order to hang on to the most important.

I’m trying to be sensible…I realize that homelessness is not a good option so I’m still working just enough to not quite squeak by financially (we’re making up the difference by selling stuff on Craigslist).  Unlike so many people who tell me they are “barely squeaking by,” I really mean it.  We’re comfortably below the federal poverty level.  Lucky us.

I typed this while nursing my daughter.  I’m about to carry her downstairs to sleep.  By the time I come back up, my son will likely be home from helping Daddy dismantle a swing set someone is handing down to us.  We’ll eat supper together, and spend a little time just the three of us before bed.  I don’t know how long it will take to recover from my strokes, but I do know that these early years with my children can never be replaced.  So if you ever wonder where I am, assume I’m cuddling.

Feeling Normal

I meant to write about Stroke Camp first and this experience at Stroke Camp second, but you’re getting it out of order. It took me over a week to recover from camp and just as I was feeling myself again, we all got sick. So here we are weeks out without any posts. Maybe I’ll write my next one on how long it takes to bounce back from illnesses or vacations…

Ever since my stroke, I have lived in a continual carnival.

Because my stroke is cerebellar, I am constantly playing games of coordination, speed, dexterity to just get through normal activities. Reaching for something and picking it up is as challenging as one of those arcade games with the arm that you use to pick up a stuffed animal and drop it down a chute.

As I complete each task, I walk to the next along rigged paths that sway, rock, and jolt unexpectedly.  The only place to sit down to rest is on the tilt-a-whirl.  To eat lunch, I sit at a table that jiggles constantly.  As my food bounces around, I have to reach out to catch each french fry…the fries jiggle around in the basket that is jiggling around its area on the table as my arm is being jiggled by the bouncing and shifting of my seat.  

One of the rides, the “Bike Ride,” involves riding on something like the spinning teacups (only appropriately themed) and then being given a bike.  I am put on a path that is constantly moving; it wiggles and swoops, suddenly jolts left or right or up or down.  It is positioned in a tunnel that is constantly rotating a few days clockwise or counterclockwise in little jerks.  Now ride!  At the end of an exhausting day at the carnival, instead of going home to my quiet, still bed, I lie down on the tilt-a-whirl and try to sleep.

In addition to the above, my brain is constantly “pinging” my right arm to try to figure out where it is in space.  My brain seems generally less bothered by right leg and let’s it just exist in a sort of fuzzy space.

When I am doing a particularly enjoyable or interesting activity, I forget how dizzy I feel…but it is still a huge effort.  At Stoke Camp, I had the opportunity to try something both enjoyable and EASY. I rode a recumbent trike during a demo from Angle Tech.  Kelvin, from Angle Tech, had a black metal box like something out of a James Bond movie.  He opened it and pulled out all sorts of nifty pieces of equipment that allowed people to velcro their paralyzed hand to the handlebar, brace a paralyzed calf, or shorten the distance of pedaling for someone with limited range of motion.  I watched as other stroke survivors limped over to take their turn, set aside canes, were helped out of wheelchairs, hooked paralyzed limbs into various nifty gadgets, and then took off, whizzing, with huge grins on their faces.  I wanted so badly to get my turn that I was almost in tears (not usual for me).  I knew I had already been up way too long and needed to lie down really soon and my daughter was overdue for a nap.  I was dizzy and queasy and couldn’t figure out any logical order to the milling group.  I started asking for help.  A volunteer and a caregiver helped me on to one of the recumbent trikes that was adjusted only a little too tall for me.  The guy adjusting the bikes was busy taking someone else for a spin.  

I started pedaling and realized something amazing: this was easy.  Everything I do, all day long, is a huge difficult effort.  But riding the trike was a heady combination of being a fun, interesting distraction from the spinny feeling and simultaneously being easy.  I had reached a point of fatigue that I know from experience has me poking myself in the face with a fork trying to eat.  And here I was, nearly effortlessly moving through space.  My right arm and leg guided by my left arm and leg, and my wheels solidly attached to the ground with no danger of tipping.  (Upright trikes are very unstable, by the way, and not advisable for stroke survivors!)  The kind woman helping me was trying to get me to stop and listen to directions but all I wanted was to keep going and feel that incredible sensation again.  I felt normal.  I felt like me.

I even tried going off the edge of the road to see what would happen.  Nothing.  It was fabulous.

Biking is extra important in our family because we bike everywhere, not just for pleasure or exercise, but the grocery store, Costco, the hardware store, church.  Not being able to bike anywhere has been a huge change in my life.  My family can still whizz around.  Because of our handy location near the bike trails, we can actually get to Costco or Target (2.5 miles away) in the same amount of time, and a lot less trouble, by bike than in a car.  But even now that I’m back on my bike, I can only go a few effortful blocks.  If it’s anything like walking, I will gradually increase my distance. Even in the weeks since Camp, I’ve made huge strides towards “normal” biking (I weave less, for one!)

After my glorious loop on the recumbent trike, I gimped slowly, clumsily back to my room with hot eyes and tears welling up.  I was back in the continual amusement park ride.  But I’d had a taste of normal.

Here’s a video of the trike I tried.  As far as I can tell, almost any stroke survivor can ride one of these.  I wasn’t exaggerating when I said people were being helped out of wheelchairs to take off on three wheels.  This could be us: