I was asked what advice I would give to a necrotizing fasciitis patient or their caregiver. I sat down and put a lot of thought into my answer and I came up with a decent list.
These are based on my experiences as one.
1: Be prepared to be angry. Don’t fake being happy about being alive, about being a bit broken. If you bottle up the anger, trust me, it will find a way to come out. In this case, Anger is a good thing. It can help you push forward so you can make it to the next step in your recovery and survival.
2: Be prepared to face that you will never be who you were before this happened to you or the person you loved. Ask questions, seek a good therapist to help you handle the drastic changes in yourself from surviving this nightmare. If you are a caregiver, the same. You’ll need the support too if you are going to be there for the person you love during their journey and stay sane.
3: Get a box/ file folder to keep all the medical stuff in. ( Home health info, check-ups, surgeries, medical bills, insurance letters, medicine receipts, phone numbers, allergy list, medicine list, dosages, and other needed info.) Trust me, with all the new medicines, routines and medical people in your life, you will need this info in order to handle your care, and keep everything in check.
4: Brain Fog is real and it will happen. The combo of the high level of pain meds, antibiotics, ICU, sepsis, surgeries and or possible time in a coma or a near coma-like sleep will do a number on your brain and on how much you can focus. It is okay. Do things in steps, keep notes and let yourself recover from it. It will get better, even if it never goes back to how focused you were before.
5: Swearing is a justifiable thing right now. Remember number one about the anger? Swearing is going to happen. PT is painful, wound dressings can hurt, healing is not an easy road. You will hit roadblocks and setbacks. Sometimes swearing under your breath while trying to learn to do something you could do before this easily is the only way you CAN get through it. – Personally, I learned to enjoy finding new ways to curse at people with themost.. vivid imagery as I could pull off. example: turtle sucking twatwaffle jackalope of a biscuit eating slug puking ego mantic ass hat.
6: Get a recliner. A nice comfy one, with a good footrest. Because you are going to be tired for a long time, and naps well they happen. And sometimes getting up and down out of a bed just isn’t gonna happen that easily for you.
7: Accept that it’s okay to ask for help. Help to get something from the counter. Help to get out of bed, going to the store.
8: Think of three things every day that you are, that makes you who you are. With or with the NF.
9: You can get through this. We are more than just statistics on a page in black and white. We are mothers and fathers, sisters, brothers. We are friends, aunties, uncles, best friends, and lovers. We are so much more than the words “NF Survivor”. We are more than what this horrid, wretched fucked up infection took from us. We are so much more than this.