ID: The silhouette of a person in the center, with a great big wave crashing over them. The title Nervous System Flooding at the top, and a New Blog Post sticker in the lower right corner.
Dysautonomia affects everyone differently and can even affect the same person differently from day to day or due to different triggers (pain, light, dehydration). I use interventions like meditation, relaxation exercises, medications, infusions, and a careful exercise schedule to support my nervous system, but I still experience symptoms. Bright lights can both be a trigger and they can compound an already stressed nervous system. In this instance, I experienced sensory overload and slowed cognitive processing. It can be hard to understand this experience. It’s my hope that this account makes it more accessible to you.
Some backstory, I’ve been dealing with new injuries across many structures in my body (jaw, shoulders, spine, ribs) and personal stressors (lots of crying). I’m also cutting my saline infusions (one of my main interventions for Dysautonomia) in half. I expected some episodes of increased dysregulation, but this was the worst it has been in a long time.
My brother-in-law has been installing new lights in a shared space with no windows. He had mentioned they were bright and he was worried about my reaction to them. On this occasion, I had a long day and probably overdid it. Before two hours of doctor appointments, I dared to do 5 minutes of tai chi, 30 minutes of biking, and sent some emails. I used a relaxation exercise earlier in the morning, but I was still primed for flooding.
Later that evening, my brother-in-law invited me to see the lights after he installed the first half. Turning them on, I was immediately overwhelmed. I will admit I was staring directly at them - but the lights were too much for me. My eyes hurt. I got an intense headache and my body felt like it was tingling. I asked if there was any way to turn off some of the lights. My brother-in-law tried to explain why that wasn’t exactly possible but there may be other solutions.
My nervous system continued to ratchet up. At that point I was experiencing nervous system overload due to the lights in addition to an inability to process my thoughts, his words, or come up with solutions. When describing one possible solution, it took him repeating himself 4 or 5 times before I understood his meaning. I was also aware that the longer I was in that space, the longer the recovery would be.
My brother-in-law has always had my best interests at heart. He is thoughtful about how things might affect me and works hard to find ways to make my living space safer for me. He has never given me any reason to doubt his ability to come up with a solution. He wasn’t rude or mean and never raised his voice. But due to my nervous system condition I was unable to communicate with him effectively. By the end of the conversation I was so overwhelmed I needed to cry for quite some time. Not an emotional cry- just complete overwhelm. I had a headache and felt fuzzy for the next few hours.
I sent him a thank you text for listening, and an apology for my outsized reaction. He came by to check on me, give me a hug, and talk it out. It was an opportunity for me to explain why and how I became overwhelmed. He has always put in the effort to understand my symptoms and illnesses and this acted as an opportunity for him to see it firsthand. I am so appreciative that he approaches me with understanding and care and offers me a little grace. That quick turn around and reconciliation is borne of many years of recovery and effort.
The following day I woke up in a daze. I had no energy to make small talk or do anything nonessential. I felt like my whole nervous system was depressed and depleted. I hoped that it was related to pain and that my physical therapy appointment would help. I believe it was a good appointment, but I felt more tired than ever. I spent the day in a daze and had to bail on plans I had with a friend. It was impossible to shake myself out of the experience- a headache, increased pain, fuzziness, dizziness, and confusion. Even two days later, singing half a song while sitting made me feel lightheaded and I had to stop. This kind of episode can have lingering effects for days.
At my worst I was experiencing episodes like this multiple times a day, compounding my symptoms with very little downtime for recovery. It was exhausting and stressful. At my lowest, I felt completely on edge and had no energy to manage basic tasks, nevermind pursue any personal interests, like writing, volunteering, and patient advocacy.
From an outside perspective of someone who doesn’t understand my conditions, it may appear that I was being difficult or dramatic. If you haven’t experienced sensory overload or difficulty forming words and sentences, it may be hard to imagine how that might feel. By the time I can’t form words, I’m exhausted, overwhelmed, frustrated and disappointed in myself, and stressed that the original issue may not have been resolved. It’s not how I want to represent myself, and I feel the need to apologize to protect vital relationships. It’s a very stressful situation to be in. Consider what it might be like for anyone experiencing this kind of nervous system overwhelm (ie. people with autism, ADHD, PTSD, anxiety, etc). We’re not being difficult or immature, we are trying to respond to the needs of our bodyminds. So if you find yourself around someone experiencing this kind of overwhelm, consider your response. I encourage you to offer compassion and work to understand them.
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