Do you miss who you were before getting sick? Do you miss the loved one you lost to sepsis? I don’t have all the answers, but I can share my own experiences.
This topic is raw to me because we just lost our furbaby. I hesitate to say cat or pet because all our kitties are FAMILY! We’ve lost six fur babies so far. When my Husband and I first moved in together, he had Poncho and Ashley, and I had Jezzie and Bella, so we became the Brady Bunch of cats. When the last remaining kitty, Ashley, was 17 we adopted two more kittens. Bruno and Gandalf kept her alive for two more years and now they’ve passed away a year apart. We’ve never been childless before.
So, what do cats have to do with grieving your former self before sepsis? Out of every decision in life, I have always known I wanted to be a MOM! Sepsis robbed me of that. Prior to my 1st of 3 sepsis infections, my Husband and I were doing all the tests to prepare for IVF. We understood it was a long shot but thought maybe we could adopt or foster children if we were unsuccessful in having a child naturally. Sepsis robbed us of that opportunity.
Like I said previously, I had 3 sepsis infections and have been disabled for 13 years because of it. There was no way my Husband could work, take care of me and our children plus keep his sanity. So we had cats and I thank each one for being my cativan and getting me here!
For a long time, when I would see people from my past, they would always comment that I was nothing like I used to be. “Boy, have you changed!” Now, a big part of that is I’ve matured and unlearned a lot of behaviors that no longer serve me, but the other part is that sepsis has forced me to become my authentic self.
I’m not successful every day, and sometimes I regress to old behaviors, but I’m learning to love HER! I used to be the loudest voice in the room, and now I find myself listening more. I used to keep myself so busy I couldn’t think, and now I find pleasure in being still. The trauma I experienced surviving sepsis has made me who I am now, and for that, I am thankful.
So How Did I Get There?
A lot of therapy!!! I was in the Hospital on my 2nd sepsis infection, which they didn’t even call sepsis at the time, and they thought I was psychosomatic or making up a blocked common bile duct and subsequent liver poisoning for attention. I couldn’t get diagnosed with sepsis, so they diagnosed me with pseudomyxoma peritonei instead. Fortunately, that diagnosis was retracted, but you never forget the moment you’re told you have cancer, 10:00 Jan 1, 2014.
Then the Psychologist came to assess me, and I knew I had to keep it together, or I was going to be locked up. Why was I so ashamed of needing psychiatric help? Because society has taught us that mental health issues mean you are a weak person. Even when I was in nursing school, there were the RNs and Pysch Nurses, and never shall the two ever meet. Now we know mental health is just as or maybe even more important than physical health.
The Shift
Since its inception, western medicine has been focused solely on the physical body. Great, your skills have saved my life, but my mind is a mess.
I still freeze when the phone rings. For years, it was collectors calling. They harassed us at home and even harassed me at work when I attempted to go back to my job. When I became disabled by the aftereffects of sepsis, our household lost half its income. We went through our savings, RRSPs, loans, sold a vehicle; so we eventually lost our home, and downsized A LOT!
Now safe in our new home, I was ready to confront my mental health issues. I think safety is the key. It’s hard to conquer an invisible nemesis when you’re already in fight mode. My Doctors were telling me there was nothing wrong with me, so it must be me. Notice I didn’t say care team? I didn’t have one.
I was approved to receive treatment via outpatient services at our local hospital and received free counseling via a community outreach program I was referred to. I loved my counselor so much that I found her on the BC Association of Clinical Counsellors website. COVID had hit, so we did all our sessions online, which was great because I was afraid to leave my house. First, I was terrified of COVID-19 because my last episode of sepsis was from the flu. Plus, I felt misunderstood by most people. I felt judged for being ill for so long when others around me were recovering from their ailments. What’s wrong with me?
Marieke, my counselor, taught me about boundaries, how trauma lives on in our bodies, and about fight, flight, freeze, and fawn. I had to lose a lot of people from my circle. They no longer felt safe for me to be around. That the anguish I felt having emergency procedures and being alone in the hospital for most of 30 days still lived in my body. The nights I spent awake searching for answers because I was in so much physical pain and couldn’t sleep. I needed to exorcise that negativity which is part of why I am writing this. I also want you to know you are not alone. I have yet to meet a sepsis survivor that hasn’t told the same story.
One traumatic event can stop a person in their tracks. For survivors of critical illness, it’s a landslide of traumatic events. These can include traumatic memories of being hospitalized, being alone in the hospital, loss of health, loss of job, loss of income, loss of housing, loss of friends, loss of family, and loss of interest in life! It SUCKS existing when you used to live life to the fullest!
Cancer organizations are equipped to help their patients deal with the aftereffects of being critically ill. There should be follow-up care for all critically ill people. My dream is to create a department that does just that. I want to call up survivors and ask, “How are you doing?” and then have the resources to help them.
Here are My Favorite Stress Reducing Techniques!
Educate Yourself
Most of us do not achieve 100% pre-sepsis functionality after we survive sepsis. 20% of people still die from sepsis today. That’s a HUGE mortality rate! I found in my healing, knowing I had sepsis wasn’t enough. I needed to understand what had happened to me. Fortunately, there are fabulous resources online.
To learn more about Sepsis: https://www.canadiansepsisfoundation.ca/about-sepsis
To learn more about Post-Sepsis Syndrome: https://www.sepsis.org/sepsis-basics/post-sepsis-syndrome/
Tell Your Story
I get not everyone wants to share intimate details of the worst times of their lives, but it’s been so helpful for me. I’ve met so many sepsis survivors and when we tell our stories, it connects us because there is a recurring theme. It’s a relief to know someone experienced what I did and that I’m not alone. I think feeling ALONE was one of the hardest things I had to overcome.
In Canada here are some sepsis survivors and family who lost loved ones: https://www.canadiansepsisfoundation.ca/our-sepsis-stories
In the USA: https://www.sepsis.org/education/patients-family/faces-of-sepsis/
Join the Online Community
Sepsis Alliance Connect has online support groups for survivors, loved ones on everything from invisible disabilities, mental health, youth groups and another group for amputees. Join here: https://www.sepsis.org/sepsis-alliance-connect/
I don’t feel less than for having experienced psychological challenges. I feel like a warrior! Look at what I survived and I’m still here!
In a past life, I was a vibrant singer, so I associate every feeling with music. Let me leave you with a song.
