Darkness Did Me In

I was out of milk and bread but the next day was Saturday - the busiest day of the week at grocery stores.  I planned to go at 6:30 a.m. to avoid the people who fill their carts to the brim and take forever to check out.  I had forgotten the sun comes up later at this time of year because I never go out this early.  When I started driving I remembered why I no longer drive in the dark.  After cataract surgery I could ignore the tiny concentric circles around every light (halos) that the lens in my left eye creates at night.  However, when I got a 2nd lens in my right eye, the halos became too distracting.  On the way to the store I vowed to order groceries on-line.  This creates 2 challenges.

My 1st challenge is that Shoprite recently changed their pick-up procedure for on-line shopping.  Instead of calling when I drive up for my groceries at my reseved time, I must now text.  I have used a computer for 25 years and an iphone for 10 years, but I have never texted someone who is not in my contacts list.  In desperation I went into the store and showed an employee the e-mail that confirmed my order.  Thankfully she pulled the bags for my order and put it in a cart.  She had to follow me 4 stores away because the parking lot was filled to the max.  Christmas was only        4 days away.  I have since learned how to text a stranger so I will try on-line ordering again.

My 2nd challenge is that 1 loaf of bread and 1 half gallon of milk does not last a week.  I use lots of milk in my cereal and coffee.  I use a lots of bread because I make a peanut butter sandwich for lunch every day, a meat sandwich for dinner many nights, and wrap each pill in a small piece of bread to prevent it from going down my windpipe.  I eat thinly sliced bread that has only 40 calories per slice.  I am going to order 2 loaves and 2 cartons one week and 1 loaf and 1 carton the next week to see if it prevents midweek trips to the store.  homeafterstroke.blogspot.com

Sunlight

Opening my blinds to let in sunshine improves my mood.  It may be one reason I am sleeping better.    My last home had windows on only one side of the house so I love that my current home has windows on both sides.  I usually keep my curtains closed in winter to save heat, but this year I need the sunlight.  Different windows create different light patterns.  

homeafterstroke.blogspot.com

My Pain Got worse

My central pain became intolerable at night.  Central pain is constant pain created by brain damage.  Symptoms include pain caused by normally non-painful stimuli, constant burning, 

electric shock-like pain, and a stinging, tingling, or pins-and-needles sensation.  These abnormal sensations are usually localized to one body part, especially the hands or feet.  I have a constant burning sensation in my hemiplegic foot.  Three strategies give me relief.

Initially (1) taking Tylenol and (2) raising the sheet off of my foot helped me fall asleep.  In the photo I placed a ball outside the covers to show you what the ball under the covers looks like.  The ball keeps the covers off the end of my big toe all night long.  When these two strategies were not enough to help me fall sleep I added a 3rd strategy.

(3) Gel packs heated in a microwave oven.  WARNING: Gel packs heat up very quickly and are deceivingly cool at 1st touch.  I heat the gel pack for only 25 seconds on High because a stroke took away my ability to tell the difference between hot and cold in my leg. To safely remove the gel pack from the microwave and transport it to my bedroom, I put it on a stiff paper plate.  I place the gel pack NEXT to my foot. The gentle heat gradually extinguishes the burning sensation in my foot so I can fall asleep.

 Two sensations can cancel each other out.  This is why you rub a painful body part that has bumped into an object.  Ben Gay cream works because it has Capsaicin that produces a mild burning sensation that cancels the awareness of muscle pain.  homeafterstroke.blogspot.com

My Eyes Rolled Back in My Head

Here is my motivation for the craziness below.  Several studies found a small percentage of people who get covid-19 have brain damage.  Instead of a major stroke that paralyzes half of their body, they may have dozens of tiny lesions on both sides of their brain.  When our immune system overreacts to Covid-19, a cytokine storm can attack the lining of blood vessels and produce microclots that plug tiny capillaries.  I do not want more brain damage because I went shopping.  

Winter is here which means the handle of a shopping cart can be below freezing.  I grew up in Chicago so I know exposing bare skin to below freezing temperatures is painful.  I could pay $5 for an employee at Shoprite to get items on my list and bring them out to my car.  However, my knee surgery taught me Shoprite has the most unfriendly shopping procedure I have ever used.  I have to make decisions on 8 or 9 pages.  The worst part is having to search for how to get to the next page.  Sometimes I scroll down to click on "Continue" at the bottom of the page.  Sometimes I scroll up to click on a tiny icon of a shopping cart or "reserve a slot" at the top of the page.  I could pay $15 to have my groceries delivered, but I will think twice before using this expensive option.

I cannot wash and dry my thick ski mittens after they touch the ice cold handle of a shopping cart.  Wearing a disposable glove on my sound hand and wrapping my affected hand in cling wrap does a fair job of insulating my hands.  However, figuring out the procedure below fried my brain.  

1st, I don my coat and use both hands to get the zipper up a few inches.  A hand wrapped with cling wrap cannot do this job.  2nd, I tear off a piece of scotch tape and attach one end to the edge of the kitchen counter so I can grab the free end later.  3rd, I wind cling wrap around my affected hand, fold the free end over, and secure it with the tape.  4th, I tighten the velcro strap around my affected wrist so the sleeve does not slip down and push the cling wrap off my hand.  5th, my cling-wrapped hand presses against the bottom of my coat to hold it still so my sound hand can zip my coat up the rest of the way.  6th, just before I get out of my car I use my teeth to pull a disposable glove on my sound hand.    homeafterstrokeblogspot.com.

Surviving Childhood

When my grandmother began having children in 1920, infants were dying from infectious diseases like whooping cough and diphtheria.  "There were many cases of parents losing all their children in a single outbreak (1)."  So my grandmother taught my mother safety procedures who passed them on to me.  For example, my mother showed me how to sterilize baby bottles and nipples before I fed my younger siblings.  Thank God there was no daycare when I was young because a vaccine for whooping cough was not available until the 1950's.  My fear of infection was reinforced by the polio epidemic.  I do not remember if my mother told me I could be paralyzed, but her fear was palpable when she told me the swimming pools and playgrounds were closed.  Many Americans living today have not felt the agony of losing someone they love to an infectious disease because they have had access to vaccines and antibiotics their whole lives.  

My mother worked hard to keep me safe so I would feel guilty if I did not try to keep my family, friends, and people in my community safe.  When experts said we should wear masks and stay socially distant because of covid-19, I followed their advice.  My mother died when I was 35 so        I know what it feels like to lose someone I thought would be here for many years.  The Christmas present I want is to see all my loved ones next Christmas.     homeafterstroke.blogspot.com

1. Bryson, B.  The Body.  New York: Doubleday; 2019; 325.

Keeping My Christmas Spirit

This is a photo of the artificial Christmas tree my friend John put together every year since my stroke.  But after I fell on my patio

I became afraid of falling.  After denial faded, I let myself think about what would have happened to me if I had broken my hip.  

I had already made myself safe by putting furniture sliders under a reclining lounge chair that sits next to the window in this photo.  Sliding the big lounge chair out of my way allowed me to place a small folding chair that I moved around the tree.  That meant I could sit close to the tree instead of leaning over to decorate the bottom half.  However, decorating this six foot tree is tiring.  Since fatigue is one of my triggers for falling I ordered a small table top tree.




I enjoy seeing the figures of the magi and shepherd visiting the Christ child.  They create a Christmas tableau in front of the small tree.  

I made these figures years ago when my hobby was needlecraft.  I love the tiny pink and blue Christmas tree balls.  I am always amazed by how happy small things make me.

After two years I gave my big tree and normal-sized decorations to my church for their annual sale that raises money for local charities.    homeafterstroke.blogspot.com

Fatigue is a Deal Breaker

The fatigue I felt for the first year after my stroke was unlike anything I had ever experienced.  

I repeatedly felt a crushing fatigue that I could not push through.  When I did not rest, I could barely hold my head up after dinner.  Using a timer to force myself to rest was annoying because it would go off at the worst time.  Watching TV turned me into a zombie who could not stop clicking the remote because nothing good was on at the moment.  I tried reading and going on the Internet, but I got so absorbed in these activities that sitting for long periods made me tired.  I found two strategies that work for me. 

(1) Brief rests before the fatigue overwhelms me.  Lying on top of the bedspread with a towel under my shoes does not feel like I am going back to bed.  I lie down for fifteen minutes without having to get undressed.  (2)  Energy conservation.  For example, I divided doing dishes into 3 steps.  

Step 1: Empty dishwasher - rest 5 minutes.  Step 2: Take clean dishes to the appropriate cabinet with a cart.  I did not have to repeatedlty carry heavy stacks of dishes from the dishwasher to each cabinet - rest 5 minutes.  Step 3: Load dishwasher.  I have a double sink so I use one sink as a staging area to hold dirty dishes until I need to wash them.    

GOOD NEWS: My crushing fatigue faded after the first year!    homeafterstroke.blogspot.com

I'm Not Feelin' the Joy

Being an OT taught me to identify the skills a task requires and help clients regain those skills.  However, covid-19 has been an intense, unrelenting challenge so I was not happy when my

16 year old phone stopped working.  It repeatedly cut off the sound of my voice even though I could hear the person on the other end.  Covid-19 has stolen the joy of learning.  Thank God OT also taught me to divide a task into tiny steps because setting up my new phone fried my brain.

Day 1.  Get the 9 pieces out of the tightly packed box.

Day 2.  Put the pieces in the photo together.  Thank God for my 

            Carson Triview magnifier because details in diagrams in 

            the instructions were too small for me to see.  Finish by 

            plugging in the handset to charge the batteries.

Day 3.  Manual: Stick tabs on sections for the base unit and 

             handset so I can skip info about bluetooth.  Find the

             unmarked button on the base unit that opens Menu 😠

Day 4.  Plug in and program the base unit.  Record a new

             answering machine message.

Day 5.   Enter names and numbers of my contacts.

My new phone is so complicated that I need a cheat sheet on an index card to help me remember how to do common procedures and where to find the buttons that performs these procedures.  Some button labels are self-evident like "Speed Dial".  Other buttons do double duty like using a button labeled "volume" to select an option that has nothing to do with volume.  To make matters worse, some buttons on the base unit are in a different location than the hand set. 😖

It was hard to find a new phone with a jack for an earbud.  An earbud frees my sound hand to take notes when I am talking on the phone.  The earbud also keeps my sound arm from getting tired if I hold the phone to my ear when I talk for an hour with family and life-long friends who live hundreds of miles away.  homeafterastroke.blogspot.com

Being Stared at Does Not Diminish My Success

Noticing the techniques an artist uses to create an effect is distracting.  When I saw Andy Warhol's giant photos of soup cans, all I thought about was how many filters he tried before he got the colors he liked.  When I see a model walk down the runway with an exaggerated hip sway by crossing her legs in front of her body as she takes each step, I am not looking at the dress.  I am amazed that her suberb balance keeps her from falling.  I do not enjoy close-ups of a ballerina's face because I can see her drop out of character and start counting to make sure she does the 8 pirouettes the music requires.  The way I do tasks after my stroke also draws peoples' attention.  Able-bodied people have stared at me while I zip my coat, tie my shoes, cut my meat, and get in the tight back seat of a car.   

In the first year after my stroke I was working too hard to worry about what other people thought.  Later I became self-conscious.  Then I chose to think of task modification as an opportunity to teach and use what I know about performance.  As a child I danced in The Nutcracker ballet with the New York City ballet.  It was not enough to memorize the steps.  I had to convince the people in the upper tiers that I was fighting the mouse king.  So when I see people staring at me I try to project an air of confidence.  They will forget the steps they saw, but I hope they remember that stroke survivors can retain their dignity.    homeafterstroke.blogspot.com

My Covid-19 Haircut

I am the least fashion conscious person I know, but I was horrified to see how bad my short hair looked after 3 months without a haircut.  I did not have to turn around to look in a mirror to see the hair on the back of my neck.  From the front I could see a curly bunch of hair sticking straight out to the side.  I am highly motivated to reduce my risk of getting covid at the hair salon.

1.  I get the 1st appointment of the day so multiple customers have not been breathing the air in the chair I sit in.  Crowded inside spaces with poor ventilation are associated with covid transmission.  

2.  I wash my hair just before I leave home so it is clean when I arrive.   For my hair dresser's tip, I put dollar bills that sat in the sun on my window sill into an envelope.  Money is filthy so I reach for the envelope sticking out of my purse instead of digging through my wallet for cash.  I take a mask and a glove for my sound hand.

3.  At the sink my hairdresser wets my clean hair.  I put my gloved hand in front of my mask to keep it dry.  When my haircut is finished I do not let my hairdresser blow dry and style my hair.  Nobody needs gusts of wind blowing covid around.  My hairdresser has cut my hair for years so she knows what kind of cut I need.  I never schedule an activity after my haircut so I can go straight home.

4.  I pay for the haircut with a credit card which I keep by itself in a tiny purse that hangs from the strap of my over-the-body purse (see arrow).  That means I do not have to dig through my purse to find it.  I bring my own pen to sign the credit card receipt.

5.  When I get to my car I use the little finger on my sound hand to pull the mask loop off my left ear.  My teeth are then free to pull the glove off my sound hand.  I put the inside-out glove between the middle and index finger of my affected hand.  Making a fist squeezes the glove so I do not drop it.  I get out my car key which is sitting by itself in the unzipped front pocket of my purse.  After I open the car door I put the used glove in a cup that sits in a well in the driver's door.    homeafterstroke.blogspot.com