Organisation and proper tracking have helped me to understand my condition and manage my symptoms better. Some of the things I’ve come up with include:
I started out a diary with four categories – Food | Medication | Others | Symptoms – which I fill out daily. Besides noting down what I eat, what medication I take or how I feel on a particular day, the ‘Others’ column help me track down those factors (such as the changes in the weather, stress or lack of sleep) which can trigger a flare. Over time, I’m starting to notice certain patterns and know what I should avoid or when I need to be extra careful.
- Since I take medication on alternate days, I started by pinning a weekly calendar in my room to remind me which medication I had to take on which day. Over time, I got used to it and can remember, for instance, that Monday is Prednisone and Tuesday is Plaquenil.
- I had a lot of those “Aaaaah, I forgot to take my pills today!”- moments. I now set a daily alarm on my phone to remember to take my medicine every day, at the same time.
- I have one of those tiny Tupperware-kind of container in which I can put my pills when I need to carry around. Not to forget a bottle of water! Else, you could also opt for one of those weekly pill organisers:
Blood tests and appointments
Lupus being a chronic condition which requires regular blood tests and appointments, I end up with lab reports, prescriptions, receipts and other papers. I keep them all organised chronologically in a display book . This turns out to be quite practical when I need to compare changes in my blood test results over months for instance.