Hello, remember me?!? I’ve admittedly been off-the-grid for the past couple of months since Greg returned home. I’d like to say that it’s simply because I recognized how everyone really just tunes in to the blog for “Eggs over Easy”, and, while that is certainly part of it, it’s really because I needed and wanted to be off the radar. I am now coming back to myself enough to say that I had no idea the magnitude of impact this experience would have on me and my physical, emotional and mental health. I thought I was prepared and ready to take whatever came our way, but the truth is I was blindsided.
When we first started this blog, I explained how all of the Drs., nurses and transplant coordinators told us that “the waiting is the hardest part”. That is very true, but as the blog was aptly named, somewhat unknowingly at the time, the waiting isn’t the only hard part. In some ways, it’s all hard. I have spent the past several weeks being very introspective and focusing on restoring myself in parallel with Greg continuing his recovery. However, I have to be true to one of the reasons we started this blog – to try and be a helpful source for others that find themselves on the transplant journey – and so I knew I had to write this blog entry and come clean.
The biggest surprise to me in this journey is how I responded once Greg got his heart and was home and well on his way to recovery. One of my doctors said it best in that, in a sense, I need(ed) to “shut down and reboot” and that it could take months for me to restore myself. I pretty much mastered the shutdown, now I’m just hoping I can reboot as successfully. I didn’t realize the magnitude of the schedule I tried to maintain from February 6th through August 1st in trying to do it ALL. Sure, I would vent sometimes on the blog about how hard it was to work full-time, spend meaningful time at the hospital almost every day, the poor timing of Stoli being diagnosed with diabetes and throwing weekly or bi-weekly vet visits into the mix, dealing with the never-ending smoke and CO detector beepings (#@%!), taking care of the house, chores and errands, etc. etc. etc., and trying to do it all with a smile on my face so that I stayed positive and strong for Greg. But, I just kept doing it. When it came to the point when I had to take a leave from work, I honestly had no idea how “on the brink” I was. I’m not trying to be overly dramatic -I didn’t have a nervous breakdown or anything, but I certainly had gotten myself into a very anxious and exhausted state. It took me a while to even realize that what I was experiencing / feeling stemmed from panic attacks; that’s how oblivious I was to how I was doing in my attempts to focus on everything and everyone else. I was so worn out mentally and physically. To some extent, I still am. But, I am working hard on my restoration and my recovery from this journey.
At one point early on in this process, when Greg was hospitalized for 9 days to go on his IV milrinone, I was having a hard day and the social worker at the hospital reminded me that while Greg was the one that was sick, and his experience as the patient was different than mine as the spouse/loved one/family, my experience was every bit as important and difficult. I can now reflect on that statement and appreciate that validation, versus feeling guilty for “breaking” a little (or a lot) during this journey.
So, what have I been doing to repair myself? To be honest, it’s taken a combination of yoga, cognitive behavioral therapy (cbt), relaxation time, sleep, and, quite frankly, lots of dr. appointments; and I’m still only part of the way there. I’ve also done a fair amount of retail therapy (I needed good Lululemon gear for all my yoga :-)), snuck away on vaca for 2 nights for some solitude and sun, and rocked my body to Justin Timberlake last weekend with my sister. I’m still on leave from work but will be returning soon, hopefully with more mental strength, helpful tools from cbt, and a commitment to maintaining my yoga practice to help keep myself in the balance that I am now finally finding.
So, why am I telling you this? This blog, after all, is supposed to be about Greg and his second chance at life, his healthy and strong new heart, and his amazing recovery; it’s not supposed to be about me! I’m telling you because if you ever have to watch a loved one go through the transplant process or any other serious and prolonged illness/recovery, I hope some of the lessons I’ve learned/am learning can help you on your own journey.
• Even if you think you need to do it all, and you believe that you can do it all, do not dare attempt it, it’s just not possible for a sustained period of time. You cannot do it all and you shouldn’t have to.
• There is no shame and no weakness in breaking a little, or even a lot. There’s only shame in not letting yourself admit it, even give in to it, and then try to fix yourself along the way before you really, really break.
• Get a cleaning person. Really! Who the hell feels like cleaning their house on their day off from work and the hospital?!? I am still kicking myself for doing it myself all those months!
• Don’t just accept help when people ask (like me saying “yes” to Sue every time she asked if I wanted her to make me her homemade mac-n-cheese); if someone asks you if there’s something they can do, give them something to do. There’s always something that can help you, don’t be too proud, or too stubborn, to admit it.
• Make sure you take care of yourself; go to the doctor and don’t put your own health at risk. You need to be strong and healthy for this type of journey and need to take care of yourself if you’re going to be able to care for someone else. Talk to a social worker, counselor or therapist- someone that can listen objectively and try to give you practical advice for how to get through the stress of the battle.
• Make time for yourself. Yes, this sounds selfish and yes, I’ve been doing a lot of this lately, but this type of journey will challenge every fiber of your being, you need to find some quiet time to focus on yourself, reflect on your own thoughts, cry or scream or laugh, or whatever else gives you a break and a release.
• Yoga can do wonders to help you reclaim yourself mentally and physically. It has been the most powerful tool for me so far. It goes back a bit to being selfish, but going to the yoga studio, putting myself on my mat and losing myself in my practice has had amazing healing powers. My body and mind crave the focus and the clarity it brings me.
I could go on and on, but I’ll spare you. I just wanted to come back to the surface and thank you all for continuing to follow our journey and continuing to send positive thoughts and prayers to Greg and his truly amazing recovery (another “big fat 0” in last week’s biopsy!).
Lastly, I want to apologize because the blog isn’t the only place I’ve been off-the-grid. I received so many calls, emails, texts and facebook messages of support while Greg was in the hospital and in the immediate hours, days and weeks following his surgery, and I quite frankly failed at keeping up with it all and kept to a very small circle of people. Please know I am grateful for all of your outreach and support and I apologize for being selfish and introverted and a really bad family member/friend. As I continue to get back to myself, I will get better about being in touch. Really
Me and Lisa, oh, and JT stickface!