My MS on a good day…

This is how multiple Sclerosis significantly impacts my daily life.  I will explain everything step by step starting from when I first open my eyes in the morning.  I have told you that I have Multiple Sclerosis and you may in fact personally know someone with MS.  This blog will give you a glimpse into how this disease affects my every move.  It may also give you a peek into the battle that your friend is dealing with as well.  You may not realize how something minor in your life is a significant concern in mine.  Most people take every step that they make for granted.

The bedroom light comes on automatically at 6:44 in the morning.  I am a light sleeper, so this wakes me up yet at 6:45 my alarm goes off just in case.  My leg muscles need an extra few minutes to wake up, so it takes time to sit upright.  As I try to get up my legs stiffen like I was in a planking competition.  I must get them to the side of the bed and let gravity bend them towards the ground.  My legs then begin to veer in the direction of the floor.  At this point, they are as pliable as play-doe that has sat out overnight.  Finally, I am able to transfer to my wheelchair.  I say the words: “ok google good morning” and my google home device spouts off all about my day.

“Good morning Scott.  The time is 6:46 a.m.  Right now in Grove City, it’s 70 and sunny.  Today in Gove City it will be sunny with a forecasted hi of 85 and a low of 61.  On your way to work traffic is light as usual and the drive will take approximately 26 minutes.” (I have the pool where I swim set as my work address)  At this point, it lists all of my calendar events one at a time for the entire day.  Next, Google tells me everything that I have asked it to remind me of for the day.  It closes this rant by saying:  “Have a nice day.”

The first thing that I have to do is set up a ride for COTA next week.  I am in a COTA non-ADA zone meaning that I can only set up one of my trips per day.  COTA scheduling is first to come first serve.  The rule is that non-ADA households must wait until the week before the trip.  This means that if I want a ride two weeks from today, I have to wait until one week before.  It is an incredibly annoying process, but it is the only transportation service for the disabled.  “Do not rock the boat when it is the only boat in the water.” 

I take my cell phone and roll into the kitchen for breakfast.  I want to have eggs, bacon and fried potatoes with a nice glass of orange juice.  Then I remember that I just had that like twenty years ago and I do not want the same old same old.  So this morning I will have a bowl of cereal instead.  I have made sure that everything in my house that I use regularly is within reach.  To a visitor, some things may look out of place.  Since they do not live here, I am ok with that.

The floorplan of my kitchen is not the best for a wheelchair user.  I did not understand that during the design process.  If I were to track my daily mileage in my house, the majority would come from my kitchen use.  Think of my kitchen as a small school racetrack where my kitchen island is in the center.  There is not enough space between the island and the counter to turn around.  This lack of space means that I have to retrace my steps many times.  I have two options to travel in my kitchen.  First is to back-up the length of my kitchen very slowly when needed.  Choice number two is to go all the way around the track as it is faster to go forward.

My morning breakfast routine is like this: I go into the kitchen turning on the light.  I then roll about twenty feet to the other side of the room where my table is.  I set my phone and my wheelchair gloves on the table.  Moving an extra five feet allows me to do a 180.  I do this turn to end up on the right side of the refrigerator.  I then put a towel on my lap to carry the milk as it is cold on my thighs.  This towel also stabilizes the liquid filled pitcher while it sits on my legs when I move. 

I continue around this track, and I set the milk on the table.  From here I get a cereal bowl and spoon from a drawer.  All of the lower cabinets in my kitchen are drawers instead of the standard doors.  The difference keeps me from having to reach into the back of the cabinets. 

After I eat, it is time to clean up.  I first turn around so that I end up on the right side of the refrigerator again.  I set the milk on a towel on my lap and carry it to the chill chest.  Back around this track, I take my dirty bowl to the sink.  My kitchen faucet is one that you touch to turn it on and off.  This means that I do not have to struggle to reach and set it to the on or off position.  I merely touch any place on it that is metal.  I load the rinsed bowl and spoon into the dishwasher.  I turn off the lights and then go in to brush my teeth and get dressed.

I am apparently getting good at these procedures.  So far my legs and I have woken up and transferred into my wheelchair.  I listened to my google home device give me my daily rundown.  Breakfast and cleanup are complete, and I have used only forty-five minutes.  I imagine that this would have taken less time if I was not doing laps around the kitchen island.  Every morning I run more laps than a high school track star.

My morning routine at this point is close to everyone else’s.  Rolling into the bathroom, I brush my teeth and comb my hair.  Actually, I shave my head, and comb er brush my teeth.  I also trim the beard hair on my face and shave my neck.  I went through nearly a year of no beard trimming during my dark time.  It looked pretty ratty, so I want to avoid that happening again.  Now it is time to adorn me in clothing.

I take my clothes to the bathroom.  This is where I have a wall mounted grab bar to aid in stabilization while standing.  The first thing that I do when dressing is put on my socks.  Starting one leg at a time, I carefully slide each foot into my shorts.  Using my hands, I place each foot one by one onto the ground.  It is important to note that when I try to stand proper paw positioning is paramount.  I set my feet wider than shoulder-width apart and about three inches in front of the wheelchair.  I lunge upward and stabilize myself with the grab bar.  Then while holding the bar, I quickly pull up my shorts.  I had done the same thing with by briefs moments prior.

Since the advent of the elastic waistband putting my pants on is much more straightforward.  Before I switched over to these magical waistbands, I would have significant battles with my pants.  It was like watching a WWE wrestling match when I wore those belted pants.  The issue: when wearing pants that use a belt you need both hands to pull them up.  I need to hold onto the grab bar with one hand leaving me with only one hand to pull up my pants.  The next time that you get dressed try to pull up your pants with just one hand.  Do not forget that I am stabilizing myself with the other hand.

I use COTA Mainstream three days per week to get to the pool and then home.  When COTA arrives on time things run pretty smoothly.  However, they are allowed to be and have been more than thirty minutes late.  This lack of punctuality can genuinely throw a monkey wrench into my life.  I have interacted with many Mainstream drivers.  The first question that I always ask is how long they have been a driver for the bus company.  Anywhere from one year to several decades is the standard reply.  No matter the answer most have been quite friendly and willing to talk.

I roll out of my garage when the bus arrives.  COTA has a lift platform that I wheel my chair onto.  Then it raises me up to the floor of the bus.  This device lifts me so that I can roll on and prepare for the lockdown of straps.  I put my medical contraption into place and hand the driver my fare.  This chauffeur straps me in and then does some minor paperwork.  At this point, we begin our fifteen mile trip usually with a few extra side trips.  Ninety-nine percent of the time there has been only one other person on this bus.  An extra person means two additional stops.   We finally arrive and drop anchor at the community center, and I disembark.

I roll in the community center and say good morning to everyone that I know.  That round of conversation takes two maybe three seconds.  Moving to the family changing room, I prepare to swim.  I get my towels and swim goggles out of the backpack in preparation for aqua therapy.  In the pool room, they have a chairlift to aid me in getting into the pool.  They put the battery into the chairlift for it to be used.  I back up next to the seat and carefully transfer over.  From here I use the remote to dunk myself into the pool like a teabag into a cup of hot water. 

Today’s blog shows that life is much slower for me now that I am in this wheelchair.  In the day that I am describing, we are at ten in the morning.  This entry shows how this wheelchair life requires me to think about every move that I make.  With this absurdly long description, you can compare your day to mine.  The thing to remember is that this is the explanation of a good day.  Most of my days run without issues.  However, many days cause significant stress.   Some days have one or even several problems.  The description of a bad day will have to wait until my next blog entry.         

I have family staying with me for several weeks.  I will not be posting a blog for several weeks.  Rest assured one thing: I will be living with MS and still have good and bad days.