Content warning: this story contains excitement over color and consistency of poop. If you find that disgusting or disturbing, I hope you will try to find a way to read it anyway with empathy and perspective. Sometimes even poop can be a cause for celebration.
oC
Well, originally this post was titled “Feelin’ good!” and was going to be a purely uplifting story. I was on day 5 of an amazing week and decided that I needed to write, to record such a blissful experience. That way, not only would readers get to see what good days are like, and bring some extra light and positivity into my blog, but also it would be a beacon for me on bad days. Sometimes, when I feel pretty well, I’ll read my own writing from a not-so-good day because it gives me a boost to remind myself in just how many ways I feel improved. Even if I feel kinda bleh, it reminds me to feel grateful for what I do have in that moment.
I realized that I don’t have much of the opposite -- good readings to give me hope when I’m bad. It’s easy to feel hopeless when I’m on day 10 of a migraine or haven’t had a normal poop in a month. It starts to feel like “I guess this is my life now” rather than “I can get past this.” I would love to fill my journals (and this blog) with stories from good days. Then when I’m scared and losing hope, I can remind myself how good I will feel when it passes. I also hope, considering the progress I can see in my health log, that there will be more and more good days as I continue treatment and trigger control.
So that was the purpose of this post, originally. I was on cloud nine for a week. I couldn’t remember the last time I’d had that many consecutive good days -- and including a travel-heavy holiday, too! I took a plane and sat in the back seat of a cab for over an hour on Friday, then drove 4 hours Saturday, and four hours again Sunday. I ate foods not on my diet (mostly parsley and coffee cake), socialized with dozens of people, interacted with strangers, played with small children, endured stressful (and very emotionally-charged) conversations, stayed up late, walked in bright sunshine, and a million other typical triggers. And yet I had solid poops (which were even brown, for the first time in a year, due to all the greens I ate!!), no migraine or malaise, and very little pain despite all the sitting.
I have a few ideas of what may have caused this transformation, but I’ll admit it’s still mostly a mystery and somewhat a miracle. First, I had a new group of students join our program that Monday. This brought stress and anxiety for sure, but also excitement and a huge adrenaline rush. They are a wonderful group to work with so I had a lot of fun. The adrenaline, which often mitigates some symptoms, continued all week as we moved into our new classroom space (I’d been teaching for weeks with no classroom) followed by excitement for Passover, which happens to be my favorite holiday. I also think I’m finding a better balance in my diet; I’m keeping the list of foods slim but adding in enough new items to keep myself happy and somewhat nutrient-balanced. Then I decided to try taking Benadryl for every leg of the journey. I’d had some success taking it to not get sick on a plane before. It was AWESOME. I haven’t been able to be in a car for more than 10 minutes without getting a migraine and nausea in more than 15 years. This weekend, I didn’t feel sick for any of the traveling, except the hour of driving to and from the Passover Seder, when I did not take Benadryl for fear of sleeping through dinner. I was also very careful to listen to my body and lie down or meditate when needed. And finally, I attribute some of my success to parsley! I have always loved parsley and been mocked for how much of it I consume during Passover, but I’m starting to think those cravings are much like the salt cravings I used to have before my blood pressure was under control -- my body knows what it needs and, in this case, it’s natural anti-histamine which can be found in parsley! I also think endorphins from taste and additional nutrients from my first really green food may have played a role.
Whatever the reasons, I came back from this trip on fire. I felt like I could do anything. This is where I wanted to end this post. I had a day of pure euphoria. My partner actually kept giving me weird looks because I was so bubbly, excited over tiny things, talking and laughing constantly, and literally bouncing. I was almost manic with glee.
Monday I had a great day at work, spent some time in the sun, and socialized twice! After work on Tuesday, I drove a lot and did my taxes and tried to get a ton done, but got pretty tired and had to go to bed. Yesterday I skipped lunch (although I snacked all afternoon) to set up more of my classroom. I left work after eight hours -- I usually work four or five -- feeling accomplished but completely spent. I then attempted to get my medical bills and teaching license sorted out from home, which took a few hours and a lot of stress. I felt proud of my ability to not absorb the stress, however, and accomplished for getting it done.
Before I got a chance to start on my fun activity for the night, I was hit with a wall of ickiness. I couldn’t put my finger on any symptoms, I could just feel that something was wrong. So, I did what any sane person would do; I snuggled into my recliner and watched Pride and Prejudice. I felt the stress wash away but my gut had started to make some concerning noises.
When I’ve had dysautonomia episodes in the past, I’ve been bummed at myself for not having taken meds before it got bad. So last night I immediately popped an Immodium, took my nighttime meds, and figured I’d be all set! Unfortunately, as I was trying to change into my PJ’s, I suddenly couldn’t stand up, was horribly chilled yet sweating, and had horrible pain in my gut. I called for my partner but couldn’t figure out what I needed from him. I tried to change while flat on the bed. I was so cold that taking off my shirt literally hurt. I then lay there for several minutes knowing what was coming with absolutely no idea how to prepare or make my experience any less awful.
And then, it hit. I stumbled to the bathroom and had to figure out which of my needs was most pressing -- should I crouch in front of the toilet to get ready to vomit? Should I instead sit on the toilet to prepare for horrible diarrhea? Should I rest on the floor to help soothe the pain, nausea, and to not fall over should I pass out? I spent the next several minutes on the toilet, just hoping I could get it all out of my body as fast as possible, but the Immodium I’d taken seemed to be making that impossible. I then had a massive hot flash and the need to vomit (which I hate and avoid at all costs). I flattened myself on the floor, throwing off my clothes to let the cold shock my bare skin, willing the nausea away. The presyncope began and I could feel myself slipping out of consciousness; my vision getting fuzzy, my body losing feeling, my thoughts slowing and scrambling. I tried to call for help but couldn’t quite get the words out, and didn’t know what could even help other than just not being alone. The cold floor helped and I came back into myself to find that the diarrhea was now very ready to happen, despite the Immodium. I can’t describe how awful it is to need to lie down due to intense pain, dizziness, and nausea, but to instead be trapped on a toilet.
I went through a few cycles of all of this. My thoughts became delusional at times. At some point I thought maybe Benadryl, my miracle pill of the week, would save me. I stood up to get one and realized I’d need to wash my hands before putting anything in my mouth. Halfway through washing, I experienced presyncope again. I hastily rinsed my hands and turned off the water but by the time I grabbed a pill, I’d lost most feeling and control in my hands. I fumbled and dropped it in the sink. I grabbed it out of the suds, attempted to rinse it without re-dropping, and somehow made it into my mouth. I tried to slide back down to the floor without falling or hurting myself. As the symptoms continued to cycle and eventually died down, I wasn’t sure if the Benadryl did anything or not.
When it was all over, I stayed on the bathroom floor, my clothes partially back on, shaking violently, simultaneously hot flashing and deeply chilled. I felt fear, exhaustion, and a sense of loss that this perfect week had ended so horribly. I knew I had pushed myself too far, I’d just thought I could get a couple more days out of it and then use the weekend to rest. It was quite a while before I was able to crawl to my bed and try to slip under the covers. Sometimes, just lifting my arm enough to pull a blanket over my frigid body is excruciating. I actually cried out multiple times in the pain and effort of getting settled in. Despite many layers, I felt that aching cold in my whole body for at least an hour.
And here we are. Now, the next morning, I’m stuck laying down, unable to eat a full meal or shower; and yet it was enormously hard to decide whether to just take the morning off or call in sick for the whole day. I finally made the decision to stay home and felt a huge wave of relief, but also sadness at having to miss out on a day I’d been excited about, and disappointment that my coworkers will now have to cover for me yet again.
So, this post didn’t end up being the beacon I’d hoped for. But it did become something else important -- an ability to view both sides of the coin at once. I touched on this topic in another post (towards the end, under the heading “living in two worlds”), but it’s incredibly difficult to remember what it’s like to experience health while sick, and difficult to remember illness when healthy. On a surface level, sure. But even writing this post, it felt weird to conjure up what the euphoria was like. It’s cool to me to have one post with both sides accounted so immediately after they happened. I think the most important message, though, is to not forget to rest even when well. It’s easy to take a week feeling well and try to use every ounce of energy to be productive and social because who knows when you’ll have that kind of energy again? But I doubt I would have crashed quite as hard if I’d taken it easy even when healthy. I feel cheated, on some level, to not be able to get away with living a normal life, even briefly. I see my partner spend days accomplishing things, working, playing, and socializing all night -- without consequences. But grieving that reality is a whole other topic. Hopefully this story will still serve to give me hope that both sides of my life do come and go; neither is permanent.