A day in the life

As with most people with RA, I struggle to impart how this disease impacts my life both in the day to day and the overall trajectory of my life.

These days, I wake up and hobble to the bathroom. I look very much like a penguin walking, and my hair actually swings back and forth. Nice. I hop in the shower and usually feel better from the hot water. Getting dressed has always been difficult - regardless of my state of health.

Bras and RA don't go together. Ok, I'm putting that out there. I'm hoping to get a few comments of support. Swollen hands, replaced shoulders, throbbing fingers and deformed wrists with a poor range of motion capped off with early morning stiffness. The perfect pain storm. I've actually cried putting on a bra. Not a good way to start the day.  Fortunately, my personal dresser is usually available to assist and I'm dressed, made up with some semblance of presentable hair, a quick dash of cover up and off hobbling and one-stepping it down the stairs to get breakfast and head to work. This is all usually before 7:00 am. Sigh. I'm sad just writing this.

It's winter here in Ottawa, so I pile on the scarf, heavy coat, gloves, boots, grab my laptop, purse, lunch - curse loudly as something slips, and try not to trip on the stairs down to the garage. In the car and I'm off. Oh wait, my shoulders don't work properly this morning, so to compensate, I pull my seat a little further to the steering wheel so I can reach the radio and temperature control buttons in the car.

Work is 20 minutes away, it's a nice drive. I drive by farmer's fields and sing at the top of my lungs to the radio or iTunes. I like to sing. I'm not good, but it makes me happy.

I take the back stairs up to my office. Small mercies, being in HR I have always had an office. It can be used to close the door and collect myself when I'm having a bad day.  I am grateful that I have a "desk job". I am grateful I have a post-secondary education, as I don't know what I would do in an even slightly more physically demanding job.

My job is mentally demanding. Problem solving, interviewing, assisting with employee performance management, drop in questions, a 100 emails a day, and talking, talking, talking. People talk to me all day. And they usually want something. It's good that I am an extrovert. My job would likely have an introvert run screaming from the building.

The bell rings about 9 hours later and I am off to pick up the kids, go home, make dinner, eat as a family, referee fights, help with homework, clean up dinner, bath, bed (for the kids). And I have help with all of this - there is a whole other adult there from dinner onwards. Thank God.

After this marathon, I can collapse. That doesn't mean that I didn't want to earlier. Some nights I literally sit in front of the TV for 2 hours and go to bed. And that is what I can manage. Sometimes work is crazy and I conduct 20 interviews in a week, have 5 meetings a day and no free time. So I respond to emails at night for 1-2-3 hours. And then I go to bed.And hit the repeat button. Life feels out of control right now. I can't find the stop button.

Sometimes I just cry because at the end of the day, I can't do anything. I can't move. I can't type. There are nights I go to bed and my hands look like claws all curled up, all I can do is shuffle and take some meds. And hope for a better day tomorrow. Not every day is like this, but this is the best I can describe what parts of many of my days look like. This is normal for me.

For those with RA, they will read this and smile in sad agreement. Others will read this with a horrified expression on their face. Yes, there really are people living in your neighbourhood, who go to your church, who play with your kids, who work with you every day, people who you know, that have days like this. 

For an introspective post, I have an introspective song, by Green Day, Time of Your Life. For me, it's about making the best of what you have. And that is what I do.

I Hate Stairs

I can almost see my parents smile when they reads the title of this post.

"I hate stairs" was one of the phrases that started my RA journey. I was 16 when I was diagnosed and I was in a high school with two floors and no elevator. When I was flaring it would take extra time to get to class, and usually I would wait for all of the kids to be in class before I started to one-step it up the stairs. I didn't want the attention. My teachers knew that I was recently diagnosed and gave me some latitude in getting to class on time.I remembered that my science teacher called my "creaky".

So, I'll stop denying it now - I am flaring. It hurts. I am in between Biologics and it's showing. I am returning to my full-flare tricks and habits. Shuffling after I get up from a chair, loathing stairs, looking for the elevator at work - even though it is at the opposite end of the building. Un-bending my fingers in the morning as they have curled up overnight.

I went for a walk with my four year old daughter in Gatineau Park , and we picked Pink Lake to walk around (she, of course, likes pink). The start of the trail is on a lookout and you walk down some stairs to get to the trail. I walked down fours steps and started to cry. I just couldn't do it. The ups and downs of the trail leading there had been enough and my knees were screaming. And Chelsea said "Momma, what's wrong?" I said that mommy's knees hurt like her shoulders hurt and I didn't think I could walk down the stairs. She said "That's OK. We can go back to the car. I love you."

I feel so bad. She's four and her life will be shaped by a mom that can't do stuff. Already, at four and six, my kids know that daddy can carry them and mommy can't and that mommy's shoulders hurt. And mommy is going to the hospital to have her other shoulder fixed.

And the positive voice in my head says that I have many other attributes and abilities. Kids are resilient. They will grow up to be more empathetic adults. They will see past disabilities.They will be more caring. This is what I hope for.

Probably a bad choice, but I'm wallowing a little and so I am listening to Adele's song "Someone Like You". Powerful song with only Adele and a piano. It's coming to terms with a breakup, about moving on. Bittersweet, like my day today.