A Day in the Life of Riley

I'm excited to be a part of the first annual #RABlog week.  Day one of this week asks us to write about a typical day living with RA.  This might be a stretch for me to write every day, but I will do my best.  Here I go.

My day usually starts around 3 am when my baby wakes up crying.  I get awakened by her fussing, but sometimes I can’t quite get the strength to get up.  Sometimes I mumble to my husband asking to go get her bottle, and sometimes I get up and do it.  It all depends on how badly I need to go to the bathroom.  I’m usually still pretty dopey from medications I take before bed to help control my pain and Restless Leg Syndrome, so I can fall back to sleep fairly easily.

Then I really wake up for the day between 7-7:45 am, depending on when my kids get up.  I struggle to sit up because my ribs still hurt from my fall several weeks ago.  Apparently rib injuries take a ridiculously long time to heal.  I sit at the side of my bed and stretch my ankles and feet.  They are usually extremely stiff and sore in the morning, especially since I had a foot joint fusion last spring.  My feet hurt terribly as I stand and take those first couple of steps to go into the bathroom.  I do my business, then start fixing my hair to get ready to go to work. 

It takes me about 20 minutes to get my hair and makeup done.  Unless my “helper” decides to be a “hinderer” that day (my daughters love to play with my makeup).  Then I get dressed for work, and try to get the kids dressed and ready to go to daycare.

My one year old is pretty easy to get dressed.  She is always clinging to me, so I don’t have to chase her down.  My three year old, on the other hand, is a sour patch kid.  One day I will tell her it’s time to get dressed and she says OK and is very sweet and cooperative.  Another day I will tell her it’s time to get dressed and she screams NOOOOOOOOOO and throws a major fit, running all over the house.  I can’t run and can barely walk at a normal pace, so I have to wait until she runs herself into a corner in order for me to catch her and force her clothes on her.  That can take up to 10 minutes. 

I then do the finishing touches on my hair, clothes and accessories, maybe some lipstick, then I take my handful of morning medications.  I need to take them with food, but I don’t have time for breakfast because I’m usually running super late as it is.  I take a bite of granola bar or cookie that I keep in my nightstand next to my pill organizers, swallow everything with some water, grab my phone and purse, and try to get the kids out to the car (assuming their shoes and clothes are still on).

We say a quick morning family prayer in the car because I’m usually frazzled and stressed because I’m going to be late for work, again, and that’s the only time we can all be together in one place.  Then off to drop kids off at daycare.

My three year old is usually ornery and yelling at me the entire ride there, “I don’t want to go there!” but won’t give me a reason besides she wants to stay home and watch movies all day, and I have to tell her that’s not a good enough reason.  We get to daycare and after 10 minutes of my kid yelling at me in the car, she clings and hugs and kisses me and doesn’t want me to go, until the babysitter suggests the right thing to distract her.  One day it’s breakfast, another it will be a certain toy, another it will be helping get everybody’s cups on the counter, who knows?  Another 3 minutes late for work…

I drive to my office building and try to quickly get out of the car and to my office, but my feet and knees hurt with every step and I have to go slow.  Finally!  I am at work.

My job is a front desk receptionist.  I sit at a computer for most of the day.  It’s hard to find the right balance of sitting and walking to achieve the maximum amount of work with the littlest amount of pain.  I have received a few accommodations to help with my job, including an ergonomic keyboard and a comfortable chair.  Even with these accommodations, it’s still difficult to get comfortable and I get stiff really quickly.

 One of the most difficult things about my job is the abrupt standing that is required of me.  Customers will come in and ask for some information and I have to stand and walk a bit to get them what they need.  I try so hard to make it look natural even though my knees and feet are killing me.  I normally require a bit of a warm up before I can stand and a very slow few steps to help loosen me up before I can walk at least somewhat normal.  I will never be able to walk somewhat normal because of deformities in my feet and hips…  Anyway, back to work.  I try to not seem like I’m in pain when I have to get something for a customer, but it doesn’t always happen.  I have been called “cripple” more than once. 

So, 8 hours of that and it’s time to get the kids and head home.

When I get to daycare to get kids, I am usually super tired and stiff.  I go inside and the kids are usually really happy to see me.  I try to get them packed up and ready to go home, and my three year old lingers and wants to read one more book, draw one more picture on the chalkboard, play hide-and-seek one more time.  I’m so tired, I just want to go home.  Finally I convince her to come outside with me and get in the car.  By this time I’ve been carrying my baby with one arm that is usually burning because I’m trying to hold her up and use my other arm to coax my other daughter to come home.  My muscles still aren’t used to that.

We get home and as much as I want to lie down and rest, I have to make dinner.  I try to juggle making dinner, keeping the kids entertained while I make dinner, clean up messes that they make in the meantime, attempt to do a household chore like laundry or cleaning bathrooms (which usually never happens), change from my work clothes (which, again, usually never happens), try to greet my husband with a kiss and a smile when he gets home from work, and not burn dinner.

When dinner is ready and I can finally sit down, my knees hurt so badly from standing and walking around the house, they are super stiff and painful as I fall into the chair.  The rest of the evening is usually a blur.  I get kids washed and ready for bed, pick up a few toys and clothes from the floor, wash the dishes, read a book to my kids, put them to bed usually an hour or more after what I would like for them to be, take my evening medications an hour later than I should, shower, and fall into bed.

My two biggest obstacles every day are fatigue (I am ALWAYS tired), and constant pain, which makes me even more tired.  How I get through every day is beyond me, but I keep doing it.

Riley