A Day in the Life

Nearly 3 years ago (what?) I wrote a post about a day in the life of an arthritis patient. While my health hasn’t changed much since then, my life has. When I wrote that post, I was finishing up my MA. I’ve since graduated, had multiple surgeries, started a job that I’ve been in for 2 years, and grown my blog, and that’s not taking into consideration the COVID world. So I thought I would take you behind the scenes of my life now. Whether you’re curious or you’re wondering what living with chronic illnesses is like, I hope you enjoy this post!

Friendly reminder that I am not a doctor and I’m not advising you take a certain medication or supplement. I’m just sharing what I take.

6:20-6:30 – Wake up | I get up before 6:30 on basically all week days. (On Mondays it’s closer to 6.) I do, however, have to set 4-5 alarms for this because I have a history of sleeping through 3 or even 4. I’m an extremely heavy sleeper! It takes a lot to wake me up overnight. Additionally, if I get less than 6 hours of sleep, my pain is significantly higher. My body is doing a lot at all times, and it really relies on rest.

6:30-7:30 – Ease into the day | This is the real reason why I wake up nearly 2 hours before I have to work; I really have to ease into the day. If I’m lucky, my morning stiffness only lasts around 30 minutes, but if I’m near to needing my RA infusion, it can take 2 hours. And on the really bad days, or even on the days when I sleep less than 6 hours, the stiffness never eases up. I try to give myself 30 minutes to just zone out, catch up on miscellaneous stuff on the Internet, etc. The other 30 minutes, I use to do morning blog stuff. I manually pin 5-7 pins on Pinterest, make new pins on Canva for existing posts, and promote a new blog post if I have one.

How I promote my blog posts

7:30 – Take morning medications, get ready for work | My morning medications is the time of the day when I take the most medications at once. In addition to my normal medications, I’m currently on a higher dose of steroids than usual due to my RA flare. I also take a few supplements, namely Vitamin D3; sodium chloride, because POTS requires I consume more sodium than most people; Calcium, because my endometriosis treatment makes me at a higher risk for osteoporosis; and Collagen, as my skin, hair, and nails all suffer due to my Rituxan infusion. In addition, at this time of the day, I take 1 allergy pills, my POTS pill, and some of my meds for RA (the Sulfasalazine) and fibromyalgia (Gabapentin).

I generally take my medications with sparkling water because a) I have to drink a LOT of water for POTS and b) Sulfasalazine which has the grossest medication coating I’ve ever known. I’m not exaggerating; it’s orange and chalky and when I refill my pill boxes it leaves my hands and fingers covered in orange gross-ness.

The Best Tips for Working from Home with Chronic Illness

After taking my medications, I get ready for work. I’m working entirely from home right now because of COVID-19, but I still try to wear “real” clothes most workdays so I can get into the work mode.

When I get ready for work, I put on my makeup, take my non-pill allergy and asthma medications, and then brush my teeth. I like to do it in this order so my makeup has as long as possible to set before I put my glasses on. I don’t wear contacts any more because of dry eyes due to my RA, and glasses really mess up makeup you have on your face, mainly your nose. This is the makeup I’m wearing daily. Additionally, I’ve been having an asthma flare for the last 6-8 weeks. (Yes, I’m basically flaring in about half of my illnesses. My life is very fun at the moment.) Because of this, my pulmonologist has me taking more allergy and asthma medication because of this, as I have allergic asthma. Basically, for half of the year, my asthma is easily managed with only 2 medications. For the other half (the half with spring and summer allergies), I have to take 3 allergy medications and 1 inhaled asthma medication, not counting my albuterol inhaler. The type of asthma I have is allergic asthma.

Finally, before I start working, I also give my cat her medications. She is 18 and has a thyroid issue and chronic pain, so she gets Gabapentin in the morning, too! (She also gets a thyroid pill, which she prefers because it’s a pill in a treat instead of liquid.)

Beginner’s guide: rheumatoid arthritis flare up

8:00-12:00 – Work | I feel best in the morning, after my morning stiffness wears out. I get steadily worse over the course of the day, but it’s especially rough starting mid-afternoon. Because of this, I like to start working around 8 so I can be as productive as possible. Some point in the morning, I take my albuterol inhaler for the first time in the day. My pulmonologist has me taking it every 4-6 hours as needed. On good asthma flare days, I take it 2 times a day. On rougher days, it’s every 4 hours. I also try to drink at least 1 16-oz bottle of water in this time, in addition to the 12-oz can of sparkling water I use to take my medications. I need to drink a truly outrageous amount of water for POTS, but it’s more like I need to be continuously hydrated than that I just need to chug a gallon of water. I track how much water I drink with the FitBit app, as I have a FitBit for tracking my heart rate, too.

How does postural orthostatic tachycardia syndrome work?

12:00-12:30 – Lunch break, noon medications | It is SO important to take a proper break! I make a point to take a full 30-minute lunch break away from my computer every day. I also try to put my phone down for at least 10, if not 15 or 20, minutes of that break. I don’t know if it’s an anxiety disorder thing, but if I don’t get away from work and technology for even a small amount, my stress level is SO high. In this time, I generally read a book, even if it’s just a few pages.

Last Wednesday was an especially busy work day for me. I had meetings from 10:30 until 3, with only a short break around 11:30. To make sure that I could take my break, I put “Kate Lunch” in my work calendar from 11:30 to 12, and I added my manager to the invite so she was aware that I would be offline then.

And, of course, I take my noon medications. In addition to the Gabapentin and Sulfasalazine, I’ve also been taking another sodium pill, which isn’t pictured here.

How to actually rest when you take breaks

12:30-2:00 – Work | For the purpose of this post, I’ve decided to go over a day when I finish work at 2. Depending on the day, I finish work between 2 and 4:30. On the finish-at-2 days, though, I’m generally able to do more after work, which is why I’m focusing on that right now. So after I take my lunch break, I finish my work.

2:00-2:30 – Rest | I try not to shut off my work computer and immediately turn on my personal computer to pivot to blog work. Instead, I try to give myself a bit of a grace period. I tidy up my desk, maybe go for a short walk. In general, I try to decompress.

2:30-4:00 – Blog work | After I decompress, I try to do some blog work. Depending on where I am in my infusion cycle, I either am totally up to cram in some blog work or I need to immediately go to Netflix. I try to do the bulk of my blog work on the weekends because I feel worse as the day goes on and my priority during the week is my work-work, but with blogging, there’s always more to do. If I get a blog post 70% done over the weekend, I try to finish it on an afternoon. I might also work on scheduling more social media promotions or posts or working on my newsletter, which I try to send weekly.

4:00-5:00 – Rest | Since I’m not going to the gym these days (because COVID and also I’m spending the majority of my time in Maine right now), I’m trying to do more yoga. If the weather is nice, I might go down to the dock and read, but that’s happening less and less frequently because I can’t do temperatures over 80.

5:00-6:30 – Evening rest, dinner, dinner medications | By the end of the day, I am dead. I feel best when I’m horizontal or close to it, so usually by this time I’m lying down somewhere. I also eat dinner and then take my dinner meds. As you might have noticed, I take most of my medications after meals. That’s because a lot of my meds require eating before taking them. And I don’t know about you, but I like not having ulcers.

6:30-9:30 – Netflix, tidy up room, journal/planner | After dinner, I continue resting by binge watching. I am currently in the middle of rewatching all of Supernatural. I also try to tidy up my room by the end of the day as having a clean room improves my anxiety. I try to also update my planner, where I track how I’m doing on my habits and update my to-do list as necessary. Finally, I also have been trying to keep a gratitude journal, where I basically note what I’m grateful for that day.

9:30-10:30 – Evening medications, night skincare routine, bedtime yoga, cat’s medications | I take my last medications of the day before going to bed, which are for fibromyalgia, RA, and allergies/asthma. I also completely my night-time skincare routine and take another dose of my inhaled asthma medication. Finally, I give my cat her Gabapentin and steroids, as well as her thyroid medication again, and I do bedtime yoga before going to sleep. This is basically some gentle, sitting-down yoga that I do on the bed to help get myself to go into sleep mode.

And then I go to sleep! That’s a day in my life.

As you can see, chronic illness impacts most of my day. Which makes sense! After all, there’s no “off” button on a chronic illness. (I mean, in it’s the name: chronic.) When it comes to living with chronic illness, I’ve figured out what works for me over the years. And while this impacts my entire life, I’m truly not thinking about it constantly. Living with a chronic illness and chronic pain is kind of like having a flickering light in the background; you can go a while without thinking about it, but it’s still there, and it’s extremely annoying when you do think about it.

How does chronic illness impact your day-to-day?

Like this post? Check out:

The Impact of Chronic Illness on an Individual, Why You Need To Buy This Brand This Summer, How To Go Back to Work After a Long Break, What I Wish I Knew When I Was 20