It's been a while since I shared a "day in the life" post. This is mostly because I've been so sick for the past few years that my daily life is not really that interesting. But I do want to share some of the reality of chronically ill living with you, and my life has improved enough to keep it from being too super boring. So I figured it was time to share, not a day in my life, but a week in my life, starting last Saturday.
*Long post ahoy!*
I got up around 9:30am and put on my makeup, got dressed, and ate breakfast while doing my usual surf through various social medias. I decided I had enough energy not only to brush my teeth and floss, but also to hang up the clothes that I'd washed earlier in the week and call in a prescription refill. Then I read Armadale by Wilkie Collins for a little while. At 11, I paused briefly to eat lunch (which, for me, includes a handful of meds).
At 1pm, my mom and I left for our 45 minute drive to a neighboring city, where the women of our church were having a conference about dealing with various tough issues. During the drive, we talked, and I made a phone call to rearrange some doctor's appointments, something I'm only able to handle on rare, very good days. (I haven't had one of those since 2014, probably.)
We were late to the conference, but not any more than we'd intended to be, and we split to go to different "classes." I was going to the one on depression, to get some advice for family members. Mom had to bring in a padded seat for me. The class went really well, and I liked the speaker a lot. But it was about an hour and a half long, and by the end, my efforts at paying attention had paid off in me now being unable to stop yawning and also feeling super woozy and off-balanced.
Afterwards Mom and I went to get frozen yogurt, which was a new test addition to my diet. I got cake batter fro-yo and watermelon sorbet plus rainbow sprinkles, which is a far cry from the chocolate-and-strawberry-flavors-with-extra-chocolate-and-strawberries-plus-cookie-dough that I would have gotten before i was diagnosed with interstitial cystitis. Still good, though, and it lifted both my energy and my mood enough to do some quick shopping at Target. Thanks to my newest gabapentin dose (which has been kind of miraculous), I was able, a couple of days ago, to wear a skirt all day without the pain from the waistband getting to be too much, so now I'm stocking up on shirts, because I can finally wear them! Yay for skirts and shirts! Yay for not wearing dresses every day!
We then drove home, I ate dinner (which Mom cooked), and then I spent the rest of the day reading Armadale until 9pm, when it was time to get ready for bed. I washed my face, brushed my teeth, did my once-every-other-week shaving job, changed into my PJs, and took my meds. Then I realized I hadn't written my weekly blog post yet, so I stayed up a bit late working on that. By 11pm, though, I was too tired to continue, especially with 9am church the next day. So I decided to finish the blog post on Sunday and just pretend I'd posted it on time.
Unfortunately, I had a rough time sleeping because of an IC flare. It was worse than I would have expected for frozen yogurt, which is a low yellow on the diet scale, so I did some research and found out that sorbets usually have either lime or lemon juice in them. Whoops. At that point, the surprising thing became not how bad it was, but how bad it wasn't. Citrus are a high red, and yet the pain was still bearable. Yay once again for gabapentin! I was able to drink some coriander tea and go to church an hour late. That's something that never would have been possible pre-gabapentin.
Between that rough night's sleep and doing a bit too much the day before, though, I was totally exhausted during church. The second hour, I was with the other young single adults and I caught a few thoughts from the lesson, about the beginning of Israel's Exodus with the manna and the Ten Commandments. The third hour, though, when I'm with all the adult women, I wanted everyone to shut up so I could go to sleep. We were talking about keeping the Sabbath Day holy, but I just was not there for that.
At home, Mom made me some lunch, and then I collapsed into bed for my usual post-church nap. I slept longer than I'm supposed to for a nap, but I was so exhausted I just didn't even care. After that, feeling somewhat better, I finished Saturday's blog post and did a few more things on my blog. At 6pm, my mom, my brother, and I had a education support group at the church, but half of the people weren't there, so we pretty much called the meeting off. After that, I spent the rest of the day reading Armadale and vaguely perusing social media. At 10pm, I got ready for bed.
I got up at 9am, finished reading Armadale, and then got ready for the day while perusing social media. I read the entirety of Annihilation by Jeff VanderMeet before eating lunch. After lunch, I called the bank to fix my online account and my GI specialist to ask about whether he'd gotten the x-rays I'd taken two Fridays past. He had not, so I had to call the radiology place and get them to send it. I was surprised at how easy these phone calls were. Now that I'm on the gabapentin, I find that my brain is clearer, thanks to fact that IC pain isn't constantly jabbing into my consciousness anymore. Normally, I'm super anxious about phone calls because I get really confused trying to talk to someone without body language cues. Now, though, I wasn't having that problem.
After that, I did a discussion board for my Information Retrieval System Design class, as well as a sexual assault prevention course required for all students. I really appreciated that course. I think education on consent and healthy relationships is vital for everyone. I then wrote in my diary and decided to do some research to see if I could find some of the awesome designs that are available on TeePublic at lower prices. I discovered that Redbubble usually has the same designs for a bit less, if you include shipping in the calculation, but only if you get the Unisex tee. Yay for t-shirts! Yay for brilliant independent designers!
While I ate dinner, I read Daughter of the Zel by Phoebe Ritter. Then it was time for the twice-a-week ritual of playing video games while my brother watches. Right now, we're playing Super Mario Odyssey. I like it a good bit, which means I usually play just a bit too long for my fibro-y hands and eyes. Michael doesn't like it quite as much, which isn't unexpected: he's an Achiever/Killer while I'm an Explorer/Socializer (as seen here). After that, I read a little bit more, and then went with Mom to the library to exchange out my book pile. At 9pm, it was time for my shower, as well as the other nightly tasks. Before I went to sleep, I finished reading Daughter of the Zel.
I got up a little after 9am, even though I really didn't want to, because I had to pee. I got dressed and ready whilst perusing social media. Then I organized my room a little, put in a load of laundry, and started reading The Music of the Deep by Elizabeth Hall. I was supposed to have my every-other-week bladder instillation at 11am, but Mom was late getting home from work, so we ended up getting there at 11:30. Luckily, my nurse was still in. I told her about my success with gabapentin, and we decided to try and go a month in between instillations this time, which is something I thought I wouldn't be able to do for years.
Unfortunately, it's always a crapshoot whether I'll be totally okay or in a lot of pain immediately after an instillation. Today, the antiseptic ended up really stinging. It wasn't the worst I've ever had after an instillation, but I was pretty grumpy. After I got home and cleaned myself up, though, it died off some. I ate lunch, called my doctor to check whether he'd gotten the x-rays (he had), and then organized my friends list on Goodreads. Once that was done, I finished reading The Music of the Deep. Then I finally got to work on editing my current project, CUCUY. As soon as i started working on it, a few ideas for how to fix things that had been bugging me came to mind. Editing was still hard and slow, though, and I was plagued by the desire to go back to the beginning and start my editing cycle over. If I did that, though, i feared there would be too much left to do in the pages I hadn't yet gotten to. I was also afraid of falling into the common writing trap of getting stuck editing and reediting the beginning over and over again and never making any actual forward progress.
I was pulled away from that issue by the slight disaster that is my beloved cat, Spartacus. As he often does, he had decided to climb up into my lap and sleep there, between my stomach and the laptop. But he wanted all the lap space to himself, so he stretched out a little too far, pushing my laptop to the floor. The crash startled him, and as he burst out of my lap, he left a pawful of nice, deep scratches on my left arm. So I had to stop and go ask Mom for a bandage large enough to cover them.
After that, I had dinner, while I started and pretty quickly decided to DNF Midnight by Stefani Chaney. We had a little "party" for my brother's birthday, which was basically just cake and him struggling to communicate his appreciation for his gifts. While I waited for him to decide if he wanted to play video games an extra day as a birthday present, I reread the entirety of Wither by Lauren DeStefano and started on the sequel, Fever. I also switched my laundry into the dryer. My brother didn't end up telling me anything, so at 7pm, I just did my regular exercise, 30 minutes on my exercise bike while using music and the wonders of my imagination to semi-disassociate from this plane of existence (because exercising when you have chronic pain/fatigue is important, but also not at all enjoyable).
Then I went back to work on CUCUY for a little while. A little after 9pm, I got ready for bed. Before I went to sleep, I finished reading Fever.
Spartacus was hungry, and he insisted on me getting up at about 9:30am, although, once again, I did not want to. I got ready while rereading the entirety of the last book in Lauren DeStefano's trilogy, Sever. I was feeling pretty good, so after that I put my laundry away. Then I split my time between reading the lectures for my class this week and browsing social media. Once I finished the lectures, I went on to split my time between browsing social media and staring blankly and angrily at CUCUY in Word. Finally, I put on some music and was able to get some editing done.
After that I ate dinner and read the entirety of Shadow Weaver by MarcyKate Connolly while waiting for my brother to also finish his dinner. It was time for my second video game session of the week, which, as usual, involved a lot of arguing about game preferences and how terrible I am at playing. Once we finished there, I did my exercise biking and got ready for bed. Before I went to sleep, I read some of Writer to Writer by Gail Carson Levine and admired the lovely bruising underneath the cat scratches from the day before.
I got up a little after 9am and got ready whilst browsing social media. I took out my trash and then read the rest of Writer to Writer. After that, I once again opened up the Word document for CUCUY and immediately felt the urge to bang my head against the wall. I can't even describe for you how much hatred I was feeling for my book right then. I've never had this much trouble editing before, so I went to my writing friends' group chat to get some sympathy and possibly advice. I was surprised when they told me it might be a good idea to take a break. After all, I "took a break" for two years while I was too sick to do anything, and I took another break just last week. Honestly, taking a break didn't feel like the right answer for me.
What did feel like the right answer, though, was going back to the beginning of the manuscript and starting the edit over in the hopes of a) getting some more clarity and b) finding a part of the book that I didn't actually hate. That's something I've been wanting to do for weeks now, this week more than ever. So, since they were encouraging me to do what I needed to do to feel better, I decided to go ahead and do that. As soon as I read the first line of my book again, I felt much better. So it turned out, I guess, that was the right thing to do!
Unfortunately, my brain fog was really flaring up, so I decided to take a Mayo Clinic-approved 30 minute nap before I did anything else. I woke up just as Mom came home, and we went to pick up one of my meds at the store. Then I ate lunch and got back to work on CUCUY.
At dinner, I reread Defy the Stars by Claudia Gray... and then kept reading it, because it's great and I love it. In the midst of that, I got a call from my GI doctor saying that, after looking at the tests, it appears that I have IBS-C worsened by slow intestinal motility, which is likely related to the same autonomic issues that cause my POTS/NMH. He wants me to try the Low FODMAP Diet for a few weeks and see if that helps bring my abdominal distention down. Surprisingly, given how limited my diet already is, it's actually doable, but of course not at all fun. Once again I will be incapable of eating out at any restaurants. Additionally, given my past experience with elimination diets, I really doubt whether it's going to be effective. Still, I intend to give it a try... starting next week.
At 7pm, per the usual, I exercised, and then it was back to editing CUCUY. At about 9pm, I went to take my shower and get ready for bed. Before I went to sleep, I finished reading Defy the Stars.
For some reason, I had an incredibly restless night. I don't think I've had one that bad since Thanksgiving. Part of it was anxiety about Avengers: Infinity War (which I hope to finally see today), part of it was a very mild IC flare, but on the whole, I don't really know why it happened. In the process, I did come up with some ideas for my future novel projects and decided, once again, to trunk THE MERCIFUL TRILOGY, but when I got up at 8am, I was a bit of a mess. I read some of the next, recently released book in Claudia Gray's series, Defy the Worlds, but I just felt so wrong and off-kilter that I decided to go back to bed and see if that helped.
I got up again at 11am, and I did feel more normal, although still sort of weird. Sleep is important, friends! So I ate lunch, got ready for the day while perusing social media, and then spent some time going in between reading Defy the Worlds, playing the new Harry Potter: Hogwarts Mystery game (which is pretty decent!), and updating my Word documents to reflect my new thoughts for my books. I also did some research on the Low FODMAP Diet and IBS-C. By 2pm, I was entirely exhausted. Still, I pushed through, because c'est mi vie. During dinner, I took a break to discuss various sciencey things I barely understand with my brother, and then I finished Defy the Worlds. At 8pm, I got my exercise (late, I know), after which I got ready for bed, and I read some of Jeweled Fire by Sharon Shinn before I went to sleep.
So that was my week! Hopefully you got some insight out of reading about the routine of my chronically ill, frustrated writer self. Any thoughts? Let me know, and I will be back next week with the Ch1Con/Ch21Con 2018 blog tour!
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