Blog Post 08: The Mental Health Monster
It’s been awhile since I posted, but I’ve had a bit of a lull in updates to share. I last posted the night before my first infusion. It went well! It took longer than I expected (over 5 hours!) but my nurse was wonderful and took great care of me. I didn’t have too many side effects, just that I was cold for the rest of the day (Friday 3/18) and had some burning/tingling in my legs. Over the weekend, I had some nausea with one episode of vomiting, but nothing unmanageable.
In the weeks to come, there is a lot going on. I go back to my primary care physician to repeat my pre-infusion blood work to assess if I’ll need a second one. I’ll also return to the cardiologist (finally!) to go over the results of my CAM monitor and see if my rapid heart rate was a fluke or if there is an underlying issue. Then I’ll be starting with a rheumatologist! I’ve had a lot of issues with inflammation, so we’ll be evaluating if there is an autoimmune component to my illness.
I write this post, however, to touch on mental health. Chronic illness is a monster, and it can be very good at hiding under the bed. I’ll have a week where I feel okay. I’m fatigued, but I may be up for seeing a friend or an attempt at a workout (wow, I have gotten SO weak) or a trip to the dog park with Mol. I start to think that maybeeee I am rounding the corner. It never takes long for it to poke it’s ugly head out again though.
This past weekend was a prime example of this. Friday, I felt great. I took my boyfriend out to dinner for his birthday and got to celebrate him the way he deserves to be celebrated. Come Saturday, I knew that something was off, but I managed to make it out for a drink with his friends. Sunday, I was supposed to go see his sisters while he worked, before heading to his parents’ house for dinner. I couldn’t do it. I needed to shower and nap and call my doctor from my bed. I couldn’t take on anything else. So that’s what I did! I ultimately met them for dinner, but that was all I could commit to. Come Monday morning, it was impossible to ignore the effects of my attempts at normalcy this weekend. I was exhausted and sick.
I made it through most of my workday. I left maybe 30 minutes earlier than I intended to, but I hadn’t yet picked up my antibiotics that were ready that morning and I was seeing the consequences. I was doubled over in pain, peeing blood, and crying during an experiment. I wasn’t doing anyone any favors by being there.
As someone who has spent their entire life being a perfectionist and a people pleaser, this is the most heartbreaking part of the disease. Saying no. To people you care about and respect. I didn’t want to tell my boyfriend’s sisters that I couldn’t hang out with them. I didn’t want to tell my boss that I needed to go home. It’s hard. It feels like you’re disappointing them, no matter how many times they assure you that it’s okay. It is nearly impossible to feel like you’re not a burden to those around you.
Ultimately, I’ve decided that it is time to start therapy. I am so fortunate to have an amazing support system that will always pick up the phone for me. My mom and my boyfriend take the majority of those calls and they have the unique luxury of listening to me cry and ramble on about some aspect of this terrible disease that I am particularly upset about that day. I love them both and am forever grateful for their patience and reassurance, but they can’t fix me. I can’t expect them to carry the weight of my struggles when they each have plenty of their own. It’s too heavy. I’ve found a therapist who lists chronic illness as one of her areas of expertise, so I am excited to work with her and see what she recommends. I’m hoping to start next week!
I’m going to wrap this up with a social media post that pops up every once in awhile, that I will always repost. It says “sending love to everyone who wants to do better but can’t find the energy to make the necessary changes. Sending love to everyone who wonders if their exhaustion is permanent. Sending love to everyone who is tired of feeling stuck.” I think this is something that all of us with chronic health issues or mental health struggles (or both!) have experienced. I have been shown so much love through this blog, so I just wanted to extend that same love to anyone reading this who is going through something similar. Also to remind people to be kind, as a lot of us fight invisible battles everyday. We will make it though though!