I was officially diagnosed with meningitis a few days ago, probably the chronic kind as I should have gotten over it in 7-10 days. I have a terrible immune system, which will prolong meningitis healing, but this has been six weeks. I really tried to open my eyes for the picture, but I just couldn’t take the light as I’ve been laying in a dark room for a few days as my eye mask feels hot when the chills and sweats come on.
I reached out to my primary care after a few days when about 36 hours after my stem cell injections I started to get very sick. I wasn’t ever angry, I was mostly disappointed with my whacked out body and why can’t my miracle cure be just that, a miracle? We thought it was an activation of my Epstein Barr, but this felt different and worse, but I’m not a medical professional and not a huge fan of Dr Google.
Six weeks later, I’m still miserable. While the fevers don’t get so high, the shivering isn’t constant, I was blessed with a couple glorious days last week, my confusion grows, I’m experiencing bizarre episodes of anxiety that I have never felt ever. The worst was today I just wanted to do some laundry and couldn’t figure out the washing machine again, so I just collapsed on the floor and cried. I’ve always had a strong mind to carry me through these times. I’m losing it, and it’s scary.
Have you ever seen those posts on social media that say something along the lines of “post this as your status so you know someone is always listening”. It’s intended for when your friends are having a hard time. So I reached out to people who are distance friends who post those types of things all the time. I’ll tell you I got a whole lot of no one listening. I got 1, that’s ONE actual phone call that they left a voicemail that was very encouraging. I got a couple likes and a couple replies where you know it’s that concern for the moment.
What I got a lot of was basically this, “you’re so strong. You’ve been through hard things before. You’ll get through this”.
In my experience of being people’s rock is that if someone is hurting, scared, upset, feeling pain, it’s not the time to tell them how amazing they are. It’s the time to say, “I’m sorry you are hurting. What can I do to help?”
Being ignored hurts a lot as it’s hard for me to reach out. I know I’m super intense right now as the lining of my brain is swollen leading to a whole host of emotional problems, not to mention the extreme agony of the physical pain meningitis brings. I understand people have obligations and their own family to worry about. Being ignored in my biggest time of need by people who I’ve held as they sobbed, listened to their health struggles, reached out when I knew they were struggling to simply be told I’m strong and get past it feels so reminiscent of “get over it” that my family liked to tell me whenever I had a hard time of any sort.
I recognize I’m not rational on any level and can’t discern caring from the fact that many people just don’t have the ability to sit with another’s pain, but I’ve worked to be very vulnerable that I’m scared about my future as if my brain can’t figure out my washing machine, what else is coming my way?
I’m also dealing with complete heartbroken feelings that I thought stem cell injections were going to be my miracle cure. I’m ok with being physically disabled. I’m not ok with being physically disabled and mentally confused over basic tasks and experiencing weird psychological symptoms I’ve never had from before getting meningitis. It might go away. I might get better, but I’m not hopping on the Hope train right now to jump off again into despair.
Sometimes I get mad at how naive I get that the incurable can be cured. I was given a gift of hope. I still can’t be angry it didn’t go as planned , but I’m definitely despondent and despairing. If you’ve ever experienced meningitis, I hate to say this, but it’s pure hell.
I scribbled some thoughts about what it feels like to have meningitis in handwriting I can hardly read, but here’s part of it:
I curl up with an ice pack to sleep like a small, frightened child would cling to a teddy bear on a scary night in hopes the pain will subside.
I go to eat breakfast at noon mostly because the dogs won’t stop crying as their bellies are hungry. I could care less about mine. I have no appetite. I see the pictures of my son and I smiling brightly together, my riding a bike through rural France, and other mementos that I once had a happy life that delicately hung on the refrigerator to remind me there’s always a possibility of a semblance to get that back.
Today I can’t take it. I rip them off, but gently to preserve the momentous as that life doesn’t feel like it will ever come back, not even a little. Not even a reminder, not even a possibility, not even a chance. It feels cruel to put myself through looking at it.
I feel like a shell of a person I once was. I don’t feel like I exist, certainly not to many people on the outside. A comment that angers me, “Lizzie, there’s a cloud of people who care about you”. You’re absolutely right. It’s a cloud. You can see a cloud, you can know it exists, but you can’t feel it, you can fly right through it without it affecting the cloud or you. Unless it’s an angry cloud, which might shake you up and then you just want it to go away.
I want to go outside. I want to sit under a tree, even on a cloudy day, at least I can see that reprehensible cloud of caring that supposedly exists.
I feel like a shell of a person. I don’t care if the sun shines. I don’t care if it rises or sets. I don’t care about much of anything. I do the basics of eating, peeing, the tiny amount of sleep this whacky body allows curled up with my ice pack wishing for this nightmare to end. Wishing that someway, somehow, someone would rescue me from this.
It won’t happen. I’m not that sort of person people truly care about to make time for. Clouds that are intangible care about me. Reminds me of “hopes and prayers” when that’s all that’s offered to traumatized children when they see dozens of their classmates gunned down at school.
Hopes and prayers. Water vapors droplets.
That is definitely edited for how long it is. It’s just an example of how much I’ve “lost it” due to this horrible disease of meningitis. There were many steps along the way where it could have been caught by medical professionals that I won’t go into as it will be too long. I definitely deserve anger for the medical neglect.
I have had some incredible opportunities thrown my direction, but I can’t get there like this. The end point of all the opportunities all have to do with giving back to other trauma survivors and people who live alone managing multiple rare chronic illnesses as I definitely know I’m not alone in that and still recognize I’m luckier than most in my aloneness. I don’t want anyone to feel as awful as I do these past few weeks and really, the past couple years.
I can still put words together with my meningitis, but I pay a high pain price, which is why I had a blue ice pack on my head in that first picture. I had another small one on my neck and a heating pad on my back. I cling to them as it’s the only thing that helps. My teddy bear.