In Kelly’s Words – A Day in the Life

Recently an article has been going around the spinal cord injury (SCI) community that talks about “SCI burnout” caused by the extra time that is used just dealing with SCI “stuff”. The author argues that we spend about 30 hours a week deal with things like pain, spasms, bowel programs, insurance battles, etc. and there is really no escape from this. I don’t disagree! I’m not sure that I can add up a full 30 hours each week, but it is definitely a lot of time.

In light of this article—and because I get asked a lot—I thought I’d go through a “day-in-the-life” and outline all of the things that I do that are specific to my SCI. Obviously days are going to vary but here is a typical day for me on a day that I’m working as a nurse practitioner, which I do 3 days per week.

5:45 – Alarm goes off

5:50 – I’m out of bed. It takes me a few minutes just to sit up and get myself out of bed and situated into my chair.

5:57 – Finished going to the bathroom. It takes me about 6 minutes every time I go to the bathroom which I typically do 4 times each day.

6:00-7:00– Bowel program. Every day I do a bowel routine to keep myself regular and keep my body working well. I’ll spare the details of exactly how this works but it takes 45-60 minutes every day. The is probably the most annoying part of having an SCI.

7:15– Dressed and ready for work. It takes me much longer to get dressed than someone able bodied – and this has nothing to do with picking out my clothes!

At this point both Dylan (3.5 years old) and Nell (6 months) are up. Zeke has usually convinced Dylan to go to the bathroom and get dressed which, on a good day, she’ll do independently. We all go to the kitchen, get breakfast, and Zeke and I put Dylan’s lunch together, bottles for Nell at daycare, and I put my lunch together. We have made them the night before but it’s the morning that we put them into lunch boxes and have everything ready to leave the house. We then eat breakfast together and I breastfeed Nell while I eat.

8:05 – Loading everyone into the car. It takes me longer to get the girls into their car seats and me into my car. You can click here to see a video of how I do it!

8:10 – Leave for daycare.

8:20 – Arrive at daycare. I bring both girls into their classrooms. Between getting myself and both girls out of the car and the time it takes to get their things put away, it takes me about 10 extra minutes for drop off. I know this because Zeke is so much faster doing drop off than I am!

9:00 – Arrive at work. I arrive and do my first of three breast milk pumping session of the day.

9:15 – First patients. I see my first patient and will continue to see patients until noon.

12:00 – Lunch break. Go to the bathroom, takes about 6 minutes. I have an hour of time that I can finish work from the morning, eat lunch, and pump for the second time.

3:30– I have to find time in my day for a third pumping session. Thankfully my office is very supportive and I can take time when I typically see patients to pump instead but this can still be hard. It is stressful when I know I need to pump but I had a few visits that ran longer than expected so my pump time got used up and I now have people waiting. This happens often but I know I need to pump so I just do that and hope my patients will understand.

5:00 – Finish with patients. This timeline is kind of wishful thinking! I don’t always finish by 5:00, in fact today, as I write this, I finished at 5:40. Whenever I finish I then go to the bathroom again. Ideally I leave work shortly after finishing so I can get home to my family.

5:45 – Arrive home. Zeke has already picked up the girls from daycare by 5:30 and is home, sometimes having started to make dinner already. I breastfeed Nell around 6:00 and we all eat dinner together around then. Eating dinner as a family and talking about the best part of our day is something I really love.

7:00 – Begin bedtime. We start to get the girls ready for bed. If Nell is fussy I will take her, get her in pajamas and breastfeed her one last time in her room before bed. If Nell isn’t too fussy then I will start with Dylan and Zeke will be with Nell, and I’ll help Dylan brush her teeth, go to the bathroom, and get into pajamas. Zeke has definitely taken much more of the share of Dylan bedtime since we’ve had Nell because, obviously, I’m the only one who can breastfeed Nell. I’m so grateful that I have a partner who is so helpful and wonderful with our children.

7:30 – Both girls are asleep. This again feels like wishful thinking! But generally speaking this is what we shoot for and generally the timeline that we follow. After bedtime we clean up from dinner, clean out bottles from the day, clean out Dylan’s lunchbox, and clean my pumping stuff. We then prepare bottles for the next day and make Dylan’s lunch. I also usually make lunch for myself for the next day.

8:30 – Shower. It takes me about an hour to shower and get ready for bed, which includes a final time going to the bathroom. Obviously this is much longer than for someone able-bodied. I usually shower at night because to shower and do my bowel program in the morning would make me get up too early.

9:30 – 10:00 – Talk to my husband. Sometimes……

10:00 – Bed. Again wishful thinking! Nell is up about twice nightly these days, but sometimes just once. Typically, Zeke will go get her when she wakes up and bring her to me to breastfeed and then he’ll bring her back to her room when I’m done. That means I’m up for about 15-30 minutes twice. Because it takes me longer to get up and out of bed Zeke usually will get Nell. This is an accommodation we’ve made because of my SCI. Dylan is pretty good about sleeping these days but once or twice a week she will wake up and come into our room in the middle of the night or early morning. At these times Zeke will get up and bring her back to her room. Again, because he can get up so much more easily and quickly he takes that burden. I’m very lucky that he is so willing to help in these ways.

As you can see, I spend a lot of time each day on things specific to my SCI. This timeline only tracks my everyday life and doesn’t take into account other things like extra doctor’s appointments that I need (beyond just my primary care provider I also see a urologist, a physiatrist, and an orthopedist), dealing with insurance, ordering and managing medications that I take, managing supplies that I need because of my SCI (catheters, etc.), and managing and maintaining equipment like my wheelchair. I say that my life really isn’t any different today than if I didn’t have my SCI on the big things (which I truly believe) but there are certainly things that fill my days that wouldn’t without an SCI or that take longer or require more planning. I’m not complaining! My level of injury allows me to do things independently or more quickly than people with higher levels of injury. But I agree with the article I mentioned at the start of this blog, sometimes it would be nice to take a vacation from my SCI! But there are plenty of things a lot of people deal with on a day-to-day basis they wish they could shed, and sometimes they are invisible (unlike my wheelchair) which can sometimes make it even harder. I don’t dwell on this. This is my life, and it is truly great!