I knew that writing this post would be hard, but I’m finding it even harder than expected. I am going to try to just dive in and see how this goes. The event that I want to tell you about today is what happens when I push myself too hard and trigger a massive flare of my symptoms.
Days Before Event
The story starts with the days leading up to the event. For my job, I normally don’t have to work long hours, but there are times when situations come up that make it hard to avoid doing so. In those times, we will have a spike of effort where we might work long hours or even just have to change our schedule for the day to fit around some “thing” that is going on. With my condition, both the change in schedule and the long hours are a problem. Basically, I can adapt to a schedule, but sudden changes to that schedule can be risky.
For about 3 days before the flare started, it was one of these crunch times where we both had to change up our planned schedule and work a few extra hours each day. For the first day, I did great and I didn’t notice any issues with my health. As it got to be the end of the second day, however, I was starting to feel pretty unwell. I was having a migraine that was not responding completely to the meds. This left me with blurry vision on top of the headache. Things started to snowball quickly, and by the time I went to bed that night, my nerve pain was much higher, and I was starting to get rashes around my neck, arms, and hands.
Bad Morning
The next morning, I woke up early (around 5:00 AM) because of the nerve pain. Waking up that early puts me in a bad spot because the pain makes it very hard to go back to sleep, but the longer I lie still, the worse the pain gets. I opted to try to go back to sleep instead of getting out of bed, which was probably the wrong choice because the pain just got higher and higher. Eventually, it got to be time to start work. In my head, I was debating if I should be going to work since I was in a ton of pain, had an even worse migraine, and was feeling completely exhausted. Even with all that going on, I am still just really bad at setting boundaries and speaking up for myself. So of course, I threw on some clothes and hopped online.
This is the part where the big event happened, but it is also where my memory starts to get very fuzzy. How I remember it is that I was in a Zoom meeting and suddenly, I wasn’t able to remember a word. Kind of a normal brain fart sort of thing, but then I couldn’t remember more and more words. I remember the nerve pain hitting at the same time as my migraine suddenly getting much worse. At this point, I started to panic, which only made everything worse. The brain fog and confusion hit me stronger than they ever have before, and I had to drop out of the meeting I was in. At the time, I couldn’t think or say more than a word or two at a time.
I got myself moving with the single goal of trying to find my wife so she could help me, too confused to use my alert button or my phone. I only made it three steps, though, before I was totally locked up. At that point, the panic and pain overloaded my system completely. Luckily, my wife is amazing and heard me making strange noises and came right away to check on me.
Ashamed
Before I get into the physical health stuff, I have to talk about the overwhelming emotion that is still flooding me today. I know it shouldn’t be, but that doesn’t magically make it go away either. The easiest way to sum up my event is that I had a panic attack. This wasn’t my first one, but it was the first one where someone other than my wife saw it. Being on a call with my team while it happened felt horrible in so many ways. So many feelings rushed in and just fed into the whole thing, which just compounded the problem. Most of my team already had at least a general idea about my health, but there is a big difference between me mentioning it on a call and people seeing it.
I think there is a ton to unpack about the whole event, but part of my process is writing these posts. It helps me to work my way slowly through what happened while I monitor how my body is reacting. Since my mast cells like to activate for any kind of stress, I am trying to be more mindful and notice when my body is starting to ramp up. I think that is why I struggle with the team seeing me in that state. I want to keep all of my issues hidden, and most of the time it stays as an invisible illness. That stance is just me being stubborn, though. It’s like I know I need to tell people when I am having issues and speak up for myself about my limitations, but I still have a lot of self-doubt.
I know I should be blaming the system more, but it’s so much easier to target yourself. It’s not like I could magically change how mental health is viewed in the US, so instead, I try to pretend that I am doing a lot better than I really am. The whole situation is also just a lot more nuanced than can be summarized easily. I have multiple major organs being impacted, chronic pain due to nerve damage, and a pile of mental health issues. It sucks when someone asks, “How are you doing?” or “How was your weekend?” and I get a whole dialogue in my head trying to decide how much I should give away, how much they actually want to know, and numerous other questions.
Hopefully, this post is useful to others. Writing it has been a real struggle, and I have had to walk away and try again multiple times. I am going to keep working through all of these feelings and hopefully get back to my normal baseline. To help, I started a new mindfulness journal where I am doing emotional check-ins, and I am going to see how that goes. I am probably rambling too much, so it’s time to get back to talking about the event.
Few Bad Days
The morning that this all happened is such a blur to me. I remember making it out of my office with the help of my wife. I remember reaching for thoughts and words but finding nothing. I also remember how scared I was, thinking that this was the start of another big attack. The last time this happened was when I had to go on disability leave, and I also just don’t know how many times my body can handle these kinds of attacks.
Now that it is a few weeks later, I have more of an idea of what happened after talking with doctors. And even though I got some labs done that week, I am still waiting on some of the results to come back to fill in the rest of the picture. The big things I know are that my blood pressure went back into the danger zone of stage 2 hypertension, my thyroid got a little out of whack, and my digestive system got very inflamed. It also left me in a state that makes it very easy for me to get retriggered, so I have had multiple smaller events since then. After some medication adjustments, I am getting better again, but it is a slow process.
I am doing my best to stay positive and focus on the fact that we know what happened this time and we know how to get me back out of the flare. The doctor had already told me that her guess was that stress would be a trigger for me, but this was the first attack where it really proved it. Over the last few weeks, I have doubly confirmed it since my body is still in such an activated state; any extra stress causes me to start getting a reaction right away. Luckily, I can quickly take allergy medication and stop the reaction. My blood pressure is almost back down to normal too, so I think that means the damage and inflammation aren’t as bad this time.
What’s Next?
My takeaway from this event is that I really need to take stress seriously. I have worked a lot of very high-stress jobs in the past, and I think it’s easy for me to ignore when I am getting stressed. I have started doing some journaling to do regular check-ins with myself, and that will hopefully help me to identify when things are starting to get bad before they actually do get bad. I also need to speak up for myself when I am hitting my limits, which is hard for me. This experience has given me a lot of motivation to get better at it though, and I can now see why it is so important.
I guess that is all I have for now. Writing this post has totally worn me out, so I think it’s nap time for me.