I’ve mentioned my mom a lot around my blog. She’s my rock, especially when it comes to the chronic illness side of things, because she started this journey with me. She was there for every doctor appointment, every emergency room visit, and always advocated and stood up for my care when doctors and even my school system would not. She knows more about what’s going on in my body than I do because most everything before my POTS diagnosis is one big blur.
So, yeah, I mention my mom a lot around my blog. This story, however, begins with my dad.
At the dinner table one night, my dad told us that someone at work asked how I was doing. When I asked what he said back, I was honestly a little surprised by the answer. My dad comes to appointments when he can, and he listens and asks questions when we talk about it, but he had never mentioned talking about it with other people before then, if that makes sense. So, yes, I was surprised when he told his friend from work something along the lines of, “It’s like day and night, it changes so fast.”
He’s completely right, though, because I could feel fine (at least, fine for me) and then a second later need help getting back to my bed. This was the worst segue in the history of segues… Anyway, let’s get into what I really wanted to talk about in this post.
An example of night and day with chronic illness.
Last week, I went for a couple of CAT scans that I was really supposed to get done over the summer, but I’m digressing. The CAT scans went fine, they were actually pretty quick and easy. Afterward, I knew my mom was stressing about having to take so much time off of work lately for appointments and tests, so I suggested we go back to her office because it was close to the place where I got my CAT scans done. I assured her I was feeling okay, so we went to her office, I got some work done through apps on my phone, while she and her coworkers did their thing. I even got cake because there was a birthday in the office!
A little backstory: We were running late to the CAT scan. In all of the rush, I just threw on an outfit that was easy and didn’t have metal on it, which ended up being a pair of leggings and the first comfy shirt I saw. I remembered my knee braces, but not my compression socks… Oops?
Anyway, the whole time in the office, I was fine. A little tired, but I’m always tired, so it was manageable. Then it was time to go home. I grabbed my stuff and headed down the back stairs next to their office to get to our car. Again, I felt fine.
However, as soon as we got into my mom’s car, I started to feel It. “It” was the result of sitting upright all day in various chairs, from in the waiting room of the radiology place to my mom’s office, without compression socks. For those that don’t know, compression socks help my blood flow back up, when it normally just likes to gather in my legs and especially my feet. The whole day, I monitored my ankles to make sure they weren’t turning dangerous colours. When lilac starts to turn into violet, I know I need to get horizontal stat or my body’s going to do it for me.
So, we’re on our way home, and I stopped monitoring my ankles because I get nauseous if I move around too much in a vehicle (even on zofran). About halfway home, the fatigue hits and it hits hard. When we finally reached our driveway, I was too tired to get out of the car and my knees were cranky because I was moving around all day after having the anti-inflammatory shots only a few days prior.
To recap, everything in my body hurt and if it wasn’t in pain, it was exhausted.
Somehow I convinced my body to move through the garage, up the first half of the stairs, past the front door, and up the last half of the stairs. Why are there so many stairs in this house?! All I wanted to do was head down the hallway and collapse into my bed, but I went over to the couch instead because Milo was so excited, it looked like he was going to fall off of the armrest. Milo is our yorkie, by the way. I bent over to safely put him on the floor, which was a mistake.
My muscles were too fatigued to stand back up and man, was I dizzy. There was nothing to catch me if I fell backwards because I was in front of the entrance to the kitchen. I tried to push off of the end of the wall that leads you into the kitchen, but my legs wouldn’t do the rest of the work to get me standing steady, and then I was trying to dodge Milo, who was doing “You’re home! You’re home!” figure eights around my legs… It was a disaster waiting to happen.
I fell on my ass, narrowly missing Milo.
So, there I was, sitting on the floor, contemplating whether to try to do the whole standing thing again or to just live out my days on the floor. While making this decision, of course I had to post this whole fiasco to my Instagram story. Did it really happen if it wasn’t posted on social media? (See the end of this post for the picture.)
When my mom came upstairs, I explained why I was on the floor, but she’s a POTS mom, so I didn’t really have to explain. I assured her I didn’t need help, so she folded laundry while I tried to work up the energy to stand. She was done folding the laundry by the time I finally was able to get up. Dropping everything on my bedroom floor, I collapsed onto my bed, where I would stay until my dad came home with cold cuts for dinner.
Remember, I was feeling absolutely fine until the moment we got into the car to go home. That’s just the way my days go with chronic illness. One second I’m fine and can handle a doctor appointment and going to work with my mom in the same day, the next I’m too tired and achy to even pull my blanket up onto my body. Let’s not even get into how shitty I feel the day after all of this happens…
Photo taken by me. [Image Description: Dannie on the kitchen floor with the caption, “Chronic illness is falling on the floor and being too tired, weak, and in pain to get up. I live here now.”]