The New Normal, Again.

ruleI have been a out of commission lately. Upon Justin’s discharge from the hospital my role as his caregiver increased significantly before he was admitted back into the hospital through the ER late Sunday evening. To say the last week has been overwhelming and a rollercoaster of emotions would be an understatement. To read about how Justin’s doing, feel free to check out my latest update on Project: Transplant.

I learned a lesson in self-care this week. For weeks I have had people ask me: “Are you taking care of yourself?” – with rolled eyes, I said “yes, of course.” I felt fine, a little overwhelmed at times and tired, but I was okay. Coming home from the hospital was a shock to my system. I was excited, my husband was finally coming home after 21 straight days in the hospital, our puppy would finally have his human back, and I could finally take a breather from my constant commute back and forth.

No sooner did we walk in the door of our house did I realize how wrong I was. Being home, while slightly comforting, was completely overwhelming. There was no medical team, no routine, no doctors walking the halls – it was just me, a bag full of medications, some instructions, and our animals. What the hell had we gotten ourselves into?

Having not arrived home until after 9pm, we were both exhausted and decided that going to bed was probably the best choice for both of us. After a crappy night’s sleep our first official day home had started. Justin wasn’t feeling well, but pushed through, even showering before falling back asleep. The visiting nurse came by to show me how to operate his IV pump, clean his port lumens (lines), and take his vitals. So. Much. Information. Just thinking about disconnecting his IV, by myself, at midnight when his drip would be done gave me a whole new level of anxiety. Trying to hold it together, I found myself sitting in the garage, crying to my mom on the phone. I felt unprepared and inadequate to do all of this. I went to bed that night exhausted, but ready to do my part with disconnecting his IV meds. And, quite frankly, I kicked ass. I was quick, confident, and precise as I cleaned, flushed, and heparinized his lumen in under 10 minutes so he could get back to sleep.

Despite my midnight confidence it took less than half a day at home for both of us to feel overwhelmed. We made the best of it, but we knew we had a lot to figure out. By Sunday afternoon, as we were catching our groove, Justin spiked a fever of 100.8, warranting a call to the BMT unit. After being directed to go to the ER for admission, I packed up some of our things and felt a twinge of relief mixed with anxiety. It was scary that we had to head back so soon, but comforting to know he would soon be back in the BMT unit with his medical team. I made the decision, from the ER room, to take the week off of work. I had been working remotely while Justin was in the hospital, but just couldn’t find it in my power to focus on anything but what was right in front of us. It felt like a small self-care win.

I spent the night with Justin both Sunday and Monday, only going home briefly to shower and grab some additional things. When Tuesday morning came I felt panicky, I had a stomach ache, was convinced I had a urinary tract infection, was exhausted, and couldn’t do anything for my husband to help him recover. I was dreading talking to his doctor, assuming that my physical symptoms would mean they wouldn’t allow me to stay with him. I couldn’t stand the thought of being kept away right now. His doctor walked in the room, gave us an update and asked if we had any questions. Justin pointed at me and said “She doesn’t feel good.” I started bawling. She convinced me to go home, see a doctor, and get some rest. I did exactly as she said.

After lunch with my mom, seeing a doctor, doing a quick shopping trip, and picking up an antibiotic for myself, I was home. I sat in the sunroom with the windows open, ate dinner, and just took a breather. Around 6:30pm I shut the house up for the night and went into the bedroom, I was asleep within 20 minutes. Despite the felines waking me up a few times I slept until 8:30am on Wednesday morning, I couldn’t believe it. 13 hours of sleep in one night and I was convinced I could keep going. I forced myself out of bed, made some breakfast, took a shower, and prepared enough food to keep me satisfied for a couple of days at the hospital – something I had never taken the time to do before. I felt ready to get back to Justin.

I had convinced myself, over the last month, that I had been taking care of myself. I didn’t feel any more exhausted than I should, I made excuses for all of the signs of burn out I was experiencing. Of course I felt like this – my husband just had a bone marrow transplant.

That is no excuse. I didn’t adjust my self-care plan based on our new day to day life. I wasn’t increasing my water intake to compensate for the dryness of the hospital, I wasn’t being proactive with my food preparations because it was easier not to, I wasn’t napping when Justin was because I thought that was my time to “get things done”, I was lying to myself and to everyone else about my self-care and right when my role changed, it bottomed out on me. I had to, yet again, create a new normal. One that was focused on our physical and mental health FIRST. Everything else can wait for us.

 

The New Normal: Caregiver Guilt

the-new-normal_caregiver-guiltThere are so many layers to caring for a loved one that has an illness or medical issue. I thought I had experienced all of them, figured out and mastered, this role once and for all. It has been five and a half years since Justin’s original diagnosis, in that time he has participated in countless clinical and research trials, went through traditional chemotherapy, and has now spent a year of his life fighting this disease

I thought I was prepared. I thought I had figured out how to deal with the emotional aspect of being the caregiver to someone with cancer. The truth is, I wasn’t dealing with the emotional aspect of my role at all. I was avoiding it.

There is a part of me that shuts down when my husband is gearing up for, going through, or coming down from a treatment process. I become an all-business freight train. Every single thing that happens in my daily life is measured to what Justin is going through, not by him, but by me. I have less patience for nonsense, including my own.

There’s no crying in baseball.

Sometimes being a caregiver means you don’t get the time to deal with your own emotions, because, let’s face it, it’s easier not to. We all know it’s not healthy to ignore your own emotional and physical needs, but I’m here to tell you, as someone who avoided dealing with my own emotional well-being, it catches up to you.

There is this heavy guilt that comes along with taking time for yourself when you are also caring for someone else. It seems selfish to stop, to yell, to cry, to be still – there are so many other things that you could be doing – that you should be doing.

But just like the Delta Flight Attendants tell you: “Put your oxygen mask on first before assisting other passengers.”

Easier said than done.

Going into Justin’s admission I knew that I would stay the first night with him at the hospital but would head home the following night to spend some time with Bruno, our cats, and just get a good night’s sleep in our bed. As soon as, and I’m talking the minute, we walked onto the BMT unit the guilt set in. It was a pit in my stomach, a swarm of butterflies, all erupting at the thought of leaving him here to go back home the following night. The swarming caused this kneejerk reactionary crying that was unstoppable. I tried to hide it, to just swallow it and be present. It didn’t work.

I spent a good portion of our first night in the hospital and most definitely the second day crying about leaving Justin to go home. I asked him repeatedly if he would be okay on his own, knowing that he would say yes, and most likely needed me to get away from him for a few hours. He always said yes. Always.

As the hours ticked by the guilt was crushing me. How could I leave him here? Why am I reacting like this? Why am I not stronger about this? I felt so incredibly sad about him being in the room alone, and me in the car driving away from the hospital.

It’s strange being in the hospital for an extended amount of time. You lose your bearings and grasp on the real world, you forget about everything outside, the hospital campus, the hospital itself, and ultimately live life on a single floor. You forget what is going on around you. The realization of what’s going on out there while you’re stuck inside is paralyzing and overwhelming. I didn’t want to become part of the outside world while Justin was still stuck inside.

After several text message exchanges with my mother, a good friend, and conversations with Justin, I packed up my things for the night. I procrastinated on actually standing up to walk out the door. Started random conversations, putzed around on my phone, smiled at Justin with tears in my eyes. I was a mess.

Finally, I got up the courage to just go. I kissed Justin goodbye, asked him one final time if he would be alright and made him promise to call me, text me, and Facetime me. The waterworks started, he laughed at me, and pushed me out the door. I managed to make it to the car without having a nervous breakdown, drove the 20 miles back home, pulled into the garage, walked into the house, greeted my puppy, and collapsed on the bed crying uncontrollably. Bruno licked my face, laid down next to me, and once I felt like I had sufficiently gotten my emotions out, I set out to make some dinner and get ready for bed.

It wasn’t until the next morning, after getting a full eight hours of sleep, having the luxury of making my own coffee and breakfast, and being able to spend a few hours at home better preparing for my next trip to the unit, that I realized just how necessary that time was. I felt so much more refreshed and prepared to spend another night at the hospital. You see, I wasn’t doing anyone any favors by feeling guilty about needing to take time to recharge. I was nothing but a crying mess for 36 hours, and I’ll tell you what: crying messes are not useful in the bone marrow transplant unit.

I learned a valuable lesson with this new chapter over the weekend: taking care of yourself is imperative, and giving into the guilt is not an option. No one can be “on” all the time, it’s not a realistic expectation and chances are, no one expects you to fill quota anyway. Take time, be still, breath, recharge, and go back in the ring.

Fully Commit to the Foolishness

fully-commit-to-the-foolishnessIn an effort for full disclosure, I am stealing a line from a former executive I used to work with. I was standing in a room in front of the entire workforce within our organization, as Ice Ice Baby pumped through the sound system, and I was being forced to run through a tunnel of managers “like a basketball player” as my new “nickname” was announced.

“Emily, sometimes you’ve just got to fully commit to the foolishness.”

It was a groundbreaking moment for me.

I wanted to tell her, and my boss that was making me partake in such foolishness, to go take a flying leap. But I didn’t. I ran out as “Emily, don’t hesitate to facilitate, Paffenroth” was booming over the crowd. Ugh. I’m rolling my eyes even now as I type this on the screen.

She was right though, sometimes you have to let go of the reigns and just commit to the foolishness. Trying to make sense of everything and fold it up into a nice, neat, little box won’t make it any less foolish. The commitment allowed me to let go. To break free of how mortified I was, and how out of control I felt. It no longer was about the foolishness, but about how I was reacting to it.

I find myself, on a regular basis, having to remind myself to pick my battles and sometimes, fully commit to the foolishness. My constant need to fight the good fight can be downright exhausting. Not everything is going to make sense at the beginning, or even at the end, but there’s something tucked within the foolishness, even if it’s just a lesson about yourself, or at the very least, a good story to tell.

I mean, come on, can you picture me running through a crowd of people like a basketball player to Ice Ice Baby, at an all staff meeting!? Of course, you can’t! But it’s funny to think about, isn’t it?

In the midst of a difficult day yesterday, I found myself just feeling like I couldn’t keep up my pace. I couldn’t fully commit to everything going on in my life, I was overwhelmed. It left me in a holding pattern, a freeze, where I literally just sat on the floor of our resource center, padded the wall with bean bag chairs, put my laptop on my lap, and laid my head back. I contemplated just sitting there for the rest of the afternoon, I contemplated taking all of my PTO in the next two weeks, and I contemplated fully committing to the foolishness.

No one was asking me to run around to a 90s rap song in front of every staff member at my organization, so the foolishness wasn’t quite as blatant. The foolishness was me thinking I was failing if I didn’t give everything in my life 100%. That if I let some things go both physically, and mentally, that I wouldn’t be filling my role.

Regardless of my perception of what letting go means, I had to do it. I had to just focus on one task at a time, I couldn’t process everything all. the. time. I had to fully commit to the foolishness of knowing I can’t do it all. At least not by myself. Still, in my head, that seems foolish. I’ve always done it all before, why is this different? And in response to my own question: “it just is”.

This season in my life is just different than any other I have been through before. I can’t assume that will already be equipped to handle everything put before me, because nothing can prepare us for lays ahead for Justin and I. So I took a deep breath, and just tackled my work to-do list at that moment. I finished our February calendar, ran a process meeting, and went through all of my e-mails for the day, and then when 5:00pm came, I shut work down and focused on me. With yoga class at 6pm, I sat at the desk, put my headphones in and listened to the second half of one of my favorite podcasts until it was time to get up and hike it down the hallway. One thing at a time.

Turning Reflection into Everyday Goals

Shortly after I posted my last Five Stages of Reflection Series, I finished my work in the PowerSheets, identifying goals and a word for the year of 2017. I am not one to keep make new year resolutions, so I was still skeptical when thinking so broadly about the next 365 days. It’s easy to be motivated when you’re on a break from work and have the time to be thoughtful, intentional, and take care of yourself. Resolutions fall a part in the day to day of our lives. When the real world comes rolling in, it’s hard to maintain the energy that we once had on January 1st. But I pressed forward, determined to give my full effort to completing the PowerSheets.

As I went through my reflective notes and thought about the potential for the year ahead, I started to see pieces fall into place. The difference was, the pieces weren’t traditional goals about accomplishments and big ideas. My goals were about simplicity, my relationships with others, and finding happiness in everyday life. CONTENTMENT. I had spent so much time in 2016 feeling miserable and depressed that all I wanted out of my life was positive energy.

Once I started making all of the pieces fit, it became clear that I had found the path to my intentional year. Without hesitation, I selected my word of the year: CONTENT. Once I was committed to the word and the outlook for 2017, I started spreading the word on social media with both my personal community and my blogging community. The response was amazing. And, it turns out: I’m not the only one looking for contentment.

hygge-3In my efforts to share my new-found mission, another blogger commented on something I had posted: “Hygge! I’ve only discovered it recently.” – At first I thought she had misspelled hooray, maybe she commented on the wrong thread, or her phone autocorrected the word pineapple or something. When I took “hygge” to the Google machine I was pleasantly surprised to learn that it is actually a Danish word for finding contentment in everyday life. Amazing! Inspiration all the way from across the pond!

 

Determined to break CONTENTMENT (or HYGGE) down into tangible goals and tasks for the year, I started in on the details of what that looks like in the real world – in the thick of life. I broke down my goals into eight categories: Relationships, TCO Blog, Marriage, Faith, Self-Care, Health, Simplify, and Project: Transplant.The beauty of the PowerSheets? It took me through the same process that I would take my team through to develop goals, and I was none-the-wiser during the along the way. Bamboozled by the ease the process, I didn’t even realize this was the intention since the beginning. I’ve created meaningful, important, and attainable goals that have the ability to create lasting impact in my life. I’m not hustling hard for some crazy big goal; I’m just simply trying to live the most fulfilling life as myself. The epitome of Doing Me.

In an effort to maintain some accountability and to be completely transparent, I thought I would share January tending list with you!

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Each month your tending list is broken down into Monthly, Weekly, and Daily goals to help you make progress (not perfection) toward your overall mission. January is bound to be a personally challenging month for my family as we get closer to Justin’s transplant so I decided to keep it simple for the month – focusing on slow progress to get me in the habit of thinking about these things.

I’ve made some progress already on my daily goals, but much to my trying have yet to hit 5,000 steps a day. I live a relatively sedentary life, and even with incorporating intentional exercise I am still coming up short. While I am disappointed that I haven’t hit that daily goal yet, it was really eye-opening to see just how little I move throughout the day. My FitBit and I are going to be become BFFs over the next few weeks! Slow and steady – that’s how we’re going to win this race!

Goal setting is no stranger to early January, and whether you’re a resolution setter or not I want to hear about what your intentions are this year! Are you a goal setter? If not, why not? What is your vision for what 2017 will look like for you? Whether you are a repetitive goal setter or a new year pessimist I hope that your year brings you everything you need!

Reflections, PowerSheets, & Videos – OH MY!

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Reflection isn’t easy. Quite frankly, I’m not sure that I would have been able to do it without the guidance of an outside source. The first day of my holiday break included a couple of hours concentrated time with my 2017 PowerSheets. While I was excited by the prospect of this beautiful new item sitting in front of me, I wasn’t sure what I was going to write or if I would be engaged in the process. One page in and I was hooked. I was so engaged that I decided the preparation stage would have to be done in shifts, there was no way I could complete the entire section in a single evening. At this point, four days later, I am finishing up my reflection on 2016 and looking forward to getting started on goal setting.

The 5 Stages of Reflection are not concrete; they are fluid and can shift if you allow them. Here’s a refresher from the first post in this series!

  1. Prepare for Reflection
  2. 2016 Reflection
  3. Identify the Strengths & Challenges of 2016
  4. Determine Opportunities for Growth
  5. Develop Goals & Action Plans

While the preparation phase was a little more straight forward, reflection has been a winding road stopping, multiple times at numbers 2 – 4. Reflection requires identification of strengths and challenges, which will breed opportunities for growth. As I have completed the different phases of the 2017 PowerSheets I have gone back and forth through these steps like a pinball machine. Next up: Finishing up my reflection so I can develop some goals.

All week I have been trying to determine what would be the best way to share my progress with my 2016 reflection with you. Writing, pictures, Instagram posts, videos – I’ve tried them all. Finally, I decided to jump force myself outside of my comfort zone and post a video, taking you on a tour of my progress thus far.

The video is amateur, not of great quality, too long, I say um… WAY too many times, Bruno barks in the background, and I trip over myself, but you know what? That’s me! I like to have conversations with people, to share using both my ability to write and my ability to communicate verbally —> here I go again, reminding myself that MESSY IS BEAUTIFUL and that we are striving for PROGRESS, NOT PERFECTION!

PowerSheets or no PowerSheets, I hope that you are taking time to reflect on your year and looking forward to a productive and intentional 2017 – whatever that might mean for you. Stop by Instagram and let me know how your reflections are going!

Stay tuned in the coming weeks as I make progress toward setting some 2017 goals!

REBLOG: Fueling Fitness with Gratitude

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I have been using the premium version of My Fitness Pal to track my diet and exercise over the last two weeks. While adding dinner to the app last night this blog post came up! I couldn’t help but share.

Gratitude can change everything, even your healthy lifestyle. Enjoy!

Monday Mindfulness: Fuel Fitness with Gratitude

The Nerdy Side of Low-Carb

Just like most of the world, I am no stranger to weight loss attempts. Low sugar, Weight Watchers, calorie counting, the list is endless. When my doctor gave me the choice between going on medication and starting a low-carb lifestyle, I opted for the low-carb lifestyle without hesitation. I am now rounding out the fourth week of this new lifestyle, a little lighter, maybe a tad cranky, but more aware of my body and what it needs.

In order to fully understand what is happening in my body and the science behind why a low-carb diet might be beneficial while also promoting weight loss.

Let’s get nerdy: carbohydrates turn into glucose in your body, high levels of glucose promotes the production of insulin which stores the glycogen to be later used for energy. When you limit the carbohydrates going into your body, you start to burn off the glycogen that is already stored and then your body turns to the fat next. Essentially, eating a low-carb diet is the epitome of using food for fuel.

Without a doubt, the low-carb diet has had the most impact on not only my body, but also my level of awareness for how my body is functioning. Currently, I am eating approximately 100 grams of carbohydrates a day. I am no longer hungry all the time, I don’t need overly sweet food to satisfy me, starchy foods don’t taste as good as I remember them, and I can actually feel and sense how my body is using the food I provide to fuel it.

Overall impact in weeks one – four: within the first 10 days, I lost 9 pounds, actual weight loss slowed dramatically once the water weight was gone and my body adjusted to the new food intake. I do still miss the foods that were my favorites, but that is getting better as I am finding new foods to satisfy that desire. One odd negative is that muscle aches and pains can occur with low-carb diets, one night this week I woke up with a terrible charlie horse in my leg, it lasted about 10 minutes, otherwise I haven’t experienced any bad side effects.

Finding new recipes and foods to enjoy has been one of my favorite aspects of this new adventure. My last shared recipe was Baked Eggs and Sweet Potato Hash. Today, I’d like to share my latest creation: Meatball Lasagna Zucchini Boats! Remember, I am not a chef and I don’t keep track of measurements, I am a quick and easy cook so feel free to get fancy!

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