At the end of last year, I started a new category here on TCO called: Lists & Links. These posts are full of fun, little, things that I wanted to share with you that don’t… More
I 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.
Being outside of my usual routine, all of the days seem to run together. Waking up on my little pull out couch in Justin’s hospital room, I witness the hustle and bustle of a Monday but it still doesn’t feel like Monday. I woke up, walked down the hall to the bathroom, stopped to brew the first pot of coffee for the unit, stole some coffee for myself, and headed back to set up shop on my little couch looking out the window on the hospital campus as the parking lots fill up and the sidewalks start to fill with staff, patients, and students.
While my Monday morning is not structured as it normally would be, it’s a Monday nonetheless – and that calls for some motivation!
Part of my weekends are dedicated to catching up on my reading and networking with other bloggers. I was intrigued when I found a post on ScaleItSimple – a blog that focuses on Positive Vibes, Lifestyle, and Travel. Please take a moment and check out her post: Searching for Happiness – The Value of Suffering.
BLOG –> Scaleitsimple.com
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See ya on Monday!!
We could all use a little GRACE now and then – I’ve definitely been using my fair share over the last few weeks. Here is your Monday morning reminder that you are capable of so many things! More than you can even being to imagine! Dedicate some time to stillness: close your eyes, focus on your breathing, and listen to your body. Give yourself what you you need, even if it’s a little bit of grace.
There 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.
Happy Monday Morning!
It’s your last Monday of January – how are you going to use it? I plan on spending some time looking at how January went in terms of my personal, blog, and professional goals and start planning for February. It’s a whole new world for my little family – Justin has officially be admitted and started the treatment process for his bone marrow transplant. So I’ll be coming to ya from my little space inside his BMT (Bone Marrow Transplant) Unit room!
Take ahold of this Monday and DO YOU!