Something I and other arthritis patients get regularly is someone not believing that it can affect so much of your life. Now, this does depend on the person and the type of arthritis, but for a lot of us it affects every aspect of our lives. This is especially true for those who have autoimmune arthritis, like rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis. I’ve talked before about things a millennial with arthritis wants you to know, along with other topics about arthritis, but I thought today that I would get more specific about the ways arthritis affects my life. I hope that this will help you to understand the ways it affects our lives and, as always, if you have questions, feel free to ask them!
6:45 – Wake up and eat breakfast | Depending on where I am in my infusion cycle, I need anywhere from 30 minutes to 2 hours for my morning stiffness to go away. Because of this, I always get up at least an hour before I need to do things, whether that be medical appointments or work. This is also when the morning caffeine starts; I need at least 2 cups of coffee before I start feeling like a semi-functional human being due to my fatigue (which I’ll discuss in more detail later).
8:00 – Start doing things | I might leave for medical appointments, promote that day’s blog post, start working on the next blog post, or do homework. No matter what I do, I generally start doing it around 8 AM.
9:30 – Morning meds | If I haven’t taken my morning medications yet, this is the time for it. I take 4 supplements and 13 pills. They are for my arthritis, fibromyalgia, allergies, and medication side effects.
10:00 – Medical appointments, working on blog posts, or homework | This depends a lot on the day. Since I’m always better in the morning than I am in the afternoon, I schedule my appointments for the mornings and I try to be as productive as possible in the morning.
12:00 – Take a break from working, lunch, and first round of physical therapy | I generally take a break around noon. Plus, since I’m not even 3 months post-op, I’m doing physical therapy exercises twice a day. I have 6 exercises to do around noon.
12:30 – Afternoon pills, leave for school | Every day, I take 6 pills of medication around noon for my arthritis and fibromyalgia. Most days, I need my first dose of pain medications between 12 and 1. On the good days, I can make it to between 2 and 3. On the school days, I leave for school around this time. It takes me 2 bus rides and a train to get there.
1:00 – On non-school days, working on blog posts or homework. Regardless of whether or not I have school, afternoon caffeine is needed | I start working again around 1. If I have school, I’m still traveling to school around this time. I also need some afternoon caffeine or else my fatigue will make me fall asleep.
2:00 – On school days, class starts. On non-school days, I might need to take a nap. On both days, snacks are eaten | I’m currently taking Victorian Reading in Culture and Experimental Writing for Scholars, both of which seem pretty interesting so far. But if I don’t get some caffeine (and sometimes even if I do), I need a nap around here. It might be 30 minutes or it might be 2 hours. Fatigue is more than just “being tired.” Most times, I don’t wake up from my nap feeling significantly refreshed. I feel this deep in my bones and I have no chance of fighting it. Being in pain constantly and having my body trying to destroy itself is exhausting! Plus, one of the medications I’m on makes me hungry pretty much all the time (thanks, steroids), so afternoon snack it is.
3:30 – I need a break from class | My classes are 2-4:30ish, and I can generally make it until 3:30 before I have to take a break. Most of my classes take a break around this time, so that’s great, but if they, don’t my accommodations with Disability Services allow me to take a break if I need one. This is pretty much entirely about not being able to sit for a prolonged period of time. I need to stretch and move around and if I can’t do that, my pain massively shoots up. I’ve ended up in tears from pain because my class didn’t take a break and I kept waiting for it instead of just taking it because I’m allowed to. I’m not doing that any more; my personal rule is that if class hasn’t taken a break by 3:30, I take one.
4:30 – Leave class or, on non-school days, stop working if I haven’t already | Like I said, my classes get out around 4:30, so on the days when I have school, this is when I start making my trek home. On the days when I don’t have school, I stop working around here. Depending on how I’m feeling that day, I may have already stopped working. But between blogging and school, there’s pretty much always more work to be done.
5:30 – Get home; dinner between 5:30 and 7 | On the school days, this is about when I get home. Regardless of what went on that day, I eat dinner some time between 5:30 and 7. Depending on when I took my first dose of pain meds, I take my second between 6 and 8. Some days, I can go an hour between when the first dose wore off and when I need the second.
7:00 – Evening meds and shower | If I haven’t taken them yet, this is when I take my evening medications. There are 9 pills then, for my arthritis and fibromyalgia. If I’m feeling up to it, I shower around here, too. I try to shower every day, but showering is painful and tiring so it doesn’t always happen.
8:00 – Second round of physical therapy exercises and get ready for bed | I do my second round of physical therapy exercises around here, and there are the same 6 from earlier in the day as well as 6 other ones that I only do once a day. This is around when I start getting ready for bed because, again, fatigue is real. Just existing is exhausting.
9:00 – Night meds and yoga | I take 5 medications around 9 for fibromyalgia, asthma, arthritis, and endometriosis. If you’ve been keeping track, I take at least 39 pills a day; more if I have nausea or anxiety issues that day. Additionally, I do a short yoga session most nights. This helps my fibromyalgia and also helps me strengthen my muscles, which helps they take care of my joints.
10:00 – Go to sleep | Depending on how much fatigue I have and (let’s be honest) what’s on TV, I go to bed some time between 9 PM and 11 PM.
Like this post? Share it by clicking on one of the buttons on the left sidebar! You should also check out these posts:
Beginner’s Guide to Seronegative Rheumatoid Arthritis, So Someone You Know Was Diagnosed with Inflammatory Arthritis, 4 More Things a Millennial with Arthritis Wants You To Know, all posts about arthritis
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
I really like how you’ve structured this. I’ve been wanting to write a day in the life with lupus post, but I’ve had a hard time because my activities are variable. Sometimes you do a lot in one day! I’m impressed that you can attend classes and write this blog.
Thank you! Like with all illnesses, how I am can vary widely from day to day. Most of this goes out the window once my infusion runs out, which is about 3 weeks before the next 1. I generally am not able to do nearly half as much in that time.