Energy, working out, alcohol, pressed juice, friends, sleep, Ryan Adams and small moments

stacyjdylan
The Scope:Diverse Perspectives on IBD
5 min readFeb 21, 2017

My family makes fun of me because of my pressed juice/smoothie obsession, due to the cost of said indulgences. How many Clippers games could we see a year with what you spend on juice? Currently I am into Kreation but I went through a really long Pressed Juicery phase and mostly moved onto Kreation because they also make smoothies. Yes, I can make smoothies and juice at home (I do make my own green smoothie quite often) but the idea of buying pounds and pounds of veggies, an expensive juicer and then cleaning it, is very unappealing. I prefer to pick up the ready made stuff when I am out. Also, knowing it will be my reward after a workout, is motivating. Currently my 2 most frequented workout places (in addition to running and occasional cycling- always free!) are Soul-Cycle in Beverly Hills and Bar Method on 3rd street, both conveniently located near a Kreation. Yes, the workout studios mentioned here are also an indulgence of sorts, which leads me to the point I am trying to make.

I just recently stumbled on this website via this Ted Talk which is about the Compassion Fatigue Project.

“Compassion Fatigue is a state experienced by those helping people or animals in distress; it is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it can create a secondary traumatic stress for the helper.” -Dr. Charles Figley, Professor, Paul Henry Kurzweg Distinguished Chair, Director, Tulane Traumatology Institute, Tulane University, New Orleans, LA

I am not going to go into too much detail about this project but let’s just say I am dealing with some energy drain and burnout related to my son Lowell’s troubling Crohn’s disease and it is coming up on 4 years of non-stop struggle for him. He is 16, diagnosed at 2, had his first of 5 surgeries 4 years ago so seems natural that I might feel a little depleted.

I’ve done a good amount of thinking about and working on counter-acting this, and have come up with strategies to conserve energy and decrease stress. It requires a whole bunch of effort to be on top of Lowell’s care, manage appointments, insurance, billing, medications, diet, his nightly tube feeding, school, tutors, etc. We were just asked to participate in a research project that could potentially help Lowell that requires us to collect several monthly stool samples from the whole family including Lowell’s brother in college (wish me luck on getting him to be a willing participant). Is it kind of yucky to do this and talk about it? You bet, but if it might help Lowell and others down the road, it is worth it. Things such as this research study that come into play when managing a chronic illness are ongoing, often unexpected, and require energy, focus, strength and a commitment to doing whatever it takes to make things better.

So to conserve energy and decrease stress I do the following:

1. Try to get enough good quality sleep. Everyone should, it is important for all. Arianna Huffington is now making this her focus with her book and new company.

2. Be healthy which means in a general way, eating right (I am just as susceptible as the next person to cave into a sugar craving-Magnolia bakery is also close to the Bar Method), drinking a lot of water, working out, trying to meditate, and get 10,000 steps a day. (My Fitbit-another obsession of mine which my family makes fun of. Sigh).

3. Limit alcohol. This has not been that hard because it got to the point where drinking was making me not feel well. It is also really hard to come home after having too many drinks and deal with a malfunctioning tube feeding pump or have to get up early for a long doctors appointment. I still drink, don’t get me wrong (some of you can recall recent times we toasted together) but it is a lot less. I recently did dry January, and I had no alcohol for a month, which I had not done in years. It was hard on a few occasions, mostly when going out to dinner with people, but it also restored my faith that I can commit to something and be disciplined enough to follow through.

4. Work out. Usually early in the morning so I know I can get it in and start my day off right. This is more for my mental health than anything. The exercise endorphins-they are real! If all goes to hell one day, well at least I feel I have accomplished something if I have made it to a workout.

5. Limit doing too much. I want to do a lot of things — go to plays, art shows, concerts, lunch and dinner with friends, events — and I do, but I find that doing too much depletes me-the traffic to get there, parking, socializing-it can feel draining. But there is a balance as sometimes it is a wonderful re-energizer and escape. What I have become better at is doing those things that give me some respite and saying no to the things that don’t.

6. Enjoy smaller moments, little victories such as: Our favorite phlebotomist was at the lab and the blood draw was really easy. The new drive through car wash on Robertson that cost $7. Lowell calling me into his room to see the latest cute way that Ruby, our dog, is wedged up against him. My husband talking to me about the latest rock biography he is reading while Ruby is trying to get his attention. (It can be very amusing)

7. Music. And no, I don’t only listen to Bruce Springsteen. Current obsession is this Ryan Adams record, Prisoner, just released this past Friday.

Circling back to my original point-I need to have these luxuries in my life right now, Kreation, Soul-Cycle, and another thing my family finds amusing — the fact that I just finished watching the entire 7 seasons (22 episodes each) of Gilmore Girls. Talk about commitment and discipline! I need these mini every day escapes because they give me a little lift. Sometimes bigger more exciting things happen like when Chris Martin of Coldplay agrees to perform at my charity event that is now less than 3 weeks away! The small, positive moments and occasional bigger ones, provide balance to the much heavier stuff, like giving Lowell his injectable medications, and currently, the anxiety we all feel anticipating yet another surgery that he is having this week.

Even though my family makes fun of me, I know they get it, and not just because the green juice that brightens my mood means I’m just generally nicer to be around. I know that each of them also has their list of small things that provide uplifting moments (which might include repeatedly watching favorite episodes of The Office) to lighten up the hour, day, week in our family where the reality of chronic illness is never forgotten but it’s burden can momentarily be contained.

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stacyjdylan
The Scope:Diverse Perspectives on IBD

I write about caring for my son with Crohn's disease, caregivers of IBD patients, patient advocacy, and my charity. www.connectingtocure.org