I want to give an insight into what my day is like as a severe Long Covid patient. This is my personal experience. Long Covid is individual to each patient. Some patients can have higher cognitive capacity and lower physical capacity or any combination of the above.
A slow start to the day
Having Postural Orthostatic Tachycardia Syndrome (POTS) means that my body does not respond well to being upright. This means that when I wake up at around 7am I do not try and sit up or get up immediately. I usually scroll through news articles on my phone for an hour to gently ease into the day.
I also use tracking devices to check my heart rate variance (HRV), heart rate and sleep so that I can use these to pace. That means that if my HRV and heart rate are unusually high then I know I will need to take the day easy.
Around 8am I take my first set of medications which includes medications for POTS. After this I get up to use the bathroom. My parents bring me breakfast in bed. This is not as idyllic as it sounds because I don’t have the choice to not be in bed.
Breakfast is usually a green smoothie plus yogurt with muesli, fruit and chamomile tea. I take medications just after breakfast.
After breakfast, I like to scroll through the news some more. I also usually check my subscription emails which include American politics and coverage of Long Covid. I like to read newsletters such as the Sick Times and Brandon’s Long Covid Weekly Newsletter. Mid-morning I take some more medications and get dressed. Sometimes I feel fatigued throughout the whole day and sometimes if I’m lucky then I feel relatively symptom free.
The meat of my day
Around late morning I then usually have a tiny bit more energy to do something. Around half of the time I continue to do something restful such as reading a novel or browsing Reddit. I like to read widely and read genres such as literature, romance and memoir. For example, I have recently enjoyed the Fourth Wing series.
I need to be careful that my choices of books are not too stressful. If I get stressed or get my heart rate up then that can make my symptoms worse. I avoid thrillers or anything that is particularly sad or tense. Sometimes I will need to take a break from a book if it becomes too much. For example, I have recently been reading Sunbathing which is a novel about a girl dealing with her father’s suicide. I found this was impacting my dreams so I stopped reading this book before bed and started reading it earlier in the day.
If I do feel up to doing something then I might type out an article for this blog. Or, often I need to do some administration such as follow up on an application for disability benefits. Or, I have also been experimenting with publishing stock photos. Otherwise, I also like helping my family with investment tips. Overall I’ll do this for less than an hour.
We all love lunch
I usually take a short break for lunch sometime after 12pm. Lunch is usually a green smoothie, and then maybe leftovers from dinner or some gluten free toast with cheese and capsicum or the like. I take a side of herbal tea. After lunch I take further medications.
Then I usually like to spend less than an hour continuing the admin task I had started or continuing with whatever restful activity I was doing.
Then, at around 1:30pm I like to watch relaxing tv shows. I am particularly taken to the Great British Bakeoff and it’s spin offs such as the Great Pottery Throwdown and the Great British Sewing Bee. I’m also a big fan of Taskmaster. These shows are great because they are cheerful and low energy and have long running series. Because these shows are segmented I’ll usually watch about 20 minutes each of three different shows. I don’t know why I like to do this. Probably because it makes it more interesting when you switch between shows.
You can nap every day?
After my shows I like to read a book. I usually have multiple books on the go so that I can read a different one in the afternoon to the one that I read in the evening. Having different books going also allows me to match the book to my mood.
Then, around 3:15pm I take a nap. This was advised by my doctor and I find it helpful to reset by body if the day is not going so well. I usually nap for 25 minutes.
Afternoon productivity
After my nap I am usually a big groggy so I like to listen to a podcast. While I listen to the podcast I drink an electrolyte drink and eat a snack. I like to snack on salted roasted nuts and/or fresh whole fruit. I am very particular about podcasts and am currently listening to some long running series. These include Chat 10, Looks 3 which is an Australia pop culture and literature podcast. Also, Revisionist History by the American journalist Malcolm Gladwell. Plus I like to listen to the Make Visible podcast by Emily Kate Stephens where she interviews researchers and clinicians about energy limiting conditions. I take more medications.
In the late afternoon I sometimes will finish off my admin task from earlier in the day. Otherwise I like to watch Youtube videos. I either watch various Long Covid related videos such as Jarred Younger or Renegade Research. Or, I watch Eva Zu Beck’s travel vlog.
After this I usually wait for dinner by scrolling on my phone, playing simple mobile games or reading a book.
Transition to evening
My parents join me in my room for dinner. We will usually have simple Australian food. This includes things like sausages, steak, stir fries, curries, fish etc.
After dinner I like to wind down with a mug of peppermint tea and some chopped fresh fruit. I usually watch whatever tv show I am into at the moment. For example, I am obsessed with Below Deck about life on super yachts. I also watch shows like Alone where people have to survive in the wilderness. Or Farmer Wants a Wife which is an Australian reality tv show about farmers who are dating suitors. I will also usually browse Facebook.
Before I go to bed I take my evening medications. I’ll usually get into PJs. In the evening is the only time I usually wash my face. I have a shower only once a week on Saturday afternoons. I like to snuggle up with a good book in bed at around 9pm.
The last thing I do before I go to sleep is to briefly browse Reddit. I go to sleep around 10:30pm.
There you have it. That is my life in a day as a severe patient. You might also like to read about what my prognosis is or read about how I got Long Covid.
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