Wednesday, April 3, 2013

A Day in My Life

So, what's my day to day life like?

I wake up, stretch my legs (kind of a pointless venture, as they are in constant protest against bending) and hobble my way down the hallway to the bathroom.  Do my business and then head into the kitchen to make some coffee.  Imagine how much longer it takes to put a pot of coffee on when you only have one hand free because the other hand is holding on to the counter top for support.  I can get a good 5 to 10 minutes of standing in before my knees start to buckle and luckily the coffee is done by then.  So I fix a mug (with a lid) and craftily maneuver my way to our home office, my mug of coffee sitting on my walker tray while I walk down the hallway ever so slowly so I don't slosh any hot coffee on myself or our wood floors.

Then, I gulp down the myriad of drugs needed to counteract the symptoms associated with my diagnosis.  Drugs for anxiety, muscle spasticity, leg strength, walking speed and bladder issues.  And a bunch of vitamins, too.  What the heck, let's take 'em all.

I am lucky to work from home.  When I had a daily commute, the energy needed to get dressed and get out the door required me to rely on a drug called Provigil (basically speed) to get me through to the end of the week.  I got off that train when I got this job, which allows me to contribute to the household in a professional capacity without running my body into the ground on a daily basis.

The next 8 hours involves sitting at my desk, interrupted by many, many trips to pee.  Because of the interrupted signal from my brain to my bladder, I have no warning.  When I have to pee IHAVETOPEEOHMYGODI'MGOINGTOPEEMYPANTS.

At some point, I get dressed.  Getting dressed means sitting down and grabbing each leg to put them in a pair of pants and standing up just long enough to wrangle zippers and buttons before I smack my booty back down on a chair. Don't get me started on the frustrations known as wearing tights, leggings and/or spanx. Those are events entirely unto themselves.  Everything is done sitting down: getting dressed, hair and make up - all the necessary prep and primping that being a girl involves.  I have learned over the years to avoid clasps, buttons and earrings with posts at all costs because the loss of dexterity in my hands make them nearly impossible to wear.

Next, I make my way out the door, strategically planning for all of the things I need to grab before I go outside and then (of course) making a final stop to pee before I head out.  Leaving my walker by the front door, I clumsily execute the path to my car (only after my husband thoughtfully turns the car around so the driver's side is closest to the door).  I take a few ginger, precarious steps to head to my carport, then kind of fall on the driver side door to open.  I get into the car using the grab handle and pick up my legs to swing them inside. Using hand controls to accelerate, brake and turn the wheel - I get to my destination: physical therapy.  I  waddle to the back of the car and wait an annoyingly long time for my scooter lift to lower to the ground so I can ride inside.

Leg press machine, practice walking with one crutch, balance and core exercises - and one hour later, I'm exhausted.  I head down the elevator back to my car.  Oh awesome, it's raining.  Thank goodness for covered parking, otherwise I would be drenched and feeling totally defeated.  I get the scooter on the lift and wrangle a cover on it so it isn't completely ruined.

Once I'm home, there's dinner to worry about. Since I can't traipse all over the kitchen all night long, I carefully assemble all of my ingredients - down to the measuring spoons - and get started.  I sit on a stool to cook at the stove top and use my one handed technique to get things in and out of the oven while I hold on to the counter top for dear life.  I'm always afraid I'm going to lose my grip and fall into the oven.  I have a picture in my head of falling on the open door and letting out a ripping scream of pain. Ridiculous, I know.  But it could happen...?

Dinner's ready and Keith comes to the rescue to carry our plates to the living room.  And my drink, too.  After a little t.v., it's time for a shower.  I can't remember the last time I showered standing up.  My balance and leg strength make showering a dangerous pursuit; that's what my bath seat is for. If the water was too hot, I have to sit and cool off before I go anywhere - heat + MS = a bad scene.  My legs turn to Jell-o.

On the weekend, there are errands. At the grocery store I can't buy too many groceries unless I park my scooter at customer service and ask them to ride the Andre the Giant sized scooter to me that has no turning radius and makes that awful beep when you back up.  Fingers crossed that it's charged and it's the one good scooter out of the 5 or 6 they have. Once I get my groceries home, how do I get them inside?  Very carefully - sometimes in 3 or 4 trips. 

Bars, restaurants, clubs: are there steps? Are they accessible?  What about the space between tables - too tight for me to fit through?  And if we go to a party at someone's house - do I use the wheelchair, scooter or walker?  Are there steps to get inside?  Is there a bathroom on the first floor?  How crowded will it be?  Will we be inside or outside?  No mingling for me - I just have to find a seat and park it.

Yes, I am complaining.  But why?  When I was able-bodied I took the simplest things for granted.  It's a humbling thing to constantly ask people for help.  And they do, without blinking.  I have the best kind of friends.  Brandi to go grocery shopping with me.  Vanessa to drive 45 minutes from her house to mine, bringing me dinner when she knows I'm too tired to cook.  Kim to deliver hooch when I need a drink.  And the countless other friends who don't even think twice and jumble their way through my unclear directions for getting the scooter on the car, bring dinner, do the dishes, set up my gear before a show, carry my drinks etc etc etc. And Keith, my rad husband.  It doesn't go without saying, so I'm saying it.  He is the best, brightest spot in every day and helps me with pretty much everything.

It is what it is.  And what it actually is: a giant pain in the ass. Now you know why I look so tired all the time.


  1. Love you Susie. Did you ever get your Ampyra re-upped? Hope so. God, I'm still walking full time and I can TOTALLY relate to all the wall holding and cooking from a stool. Plus I agree that showers are the bane of my existence! Hang in there babe, there has to be people who handle all this with grace and you're one of 'em.

  2. you are adorable and so so sweet, at least in that you don't need to apologize for asking for help. i'm totally here for you, even not-hooch if needed! but i do appreciate the help in cleaning out my liquor cabinet. as i'd said, we hardly ever drink it! maybe next time we'll pick one and make our way through some recipes. your typical day sounds so exhausting, but know that you always look gorgeous. <3