My Responses to the “Day in the Life” Linkup
These responses are part of the ‘Day in the Life’ linkup, which aims to showcase people with different illnesses, and how they live their lives. The definition of ‘normal’ is always an intriguing topic to me, because there is no such thing. It could be a macro definition that covers a specific society and culture. Or it could go right down to a micro level, that details an individual’s daily routine, out of billions of people on this planet.
Here’s a glimpse of what my average day looks like for this moment in time. This isn’t set in stone, as life, circumstances and chronic illness are bound to change. If you’d like to participate and share some insight too, the link is at the bottom of this post.
A Day in My Life with Chronic Illnesses
- In brief, chronic illnesses I have.
– Antiphospholipid Syndrome
– Lupus (SLE)
– Sjögren’s Syndrome
– PSVT (heart rhythm disorder)
– Mitral valve repair
– Clinical Depression & Anxiety
- Where do you come from? How accessible is your city/town?
Singapore, an island state in Southeast Asia. It’s super small, which makes everything convenient and accessible.
- My first thought and/or sensation when I become conscious in the morning.
I move my body a little to gauge the pain levels for the day.
“Ugh, X part of my body hurts.”
I then roll over to gently push myself up like how they do it in yoga classes, to try and minimise the pain of sitting up. Then I force myself to stand and limp to the kitchen for breakfast and coffee. Here are some funny but painful memes that I can relate to, and that might explain it better!
- How long it takes for me to go from zero to functioning, if at all.
About two hours, once the steroids and coffee kick in. Prior to that, I’m pretty much zombie-ish with little energy, nausea and/or body aches.
- What my morning routine is like in general.
A simple breakfast and wash up. Catch up on routine stuff on my computer such as the news, emails, schedules, etc. If I have work, then that is my priority because who knows how much energy I have left for the day; things can always take an ominous turn with chronic illness.
- Best and worst times of the day in terms of pain, fatigue, etc.
Mornings are usually the worst especially if I’m in a flare phase, as I’ve been stationary all night without any medications. Nights are also not good as inflammation levels are highest then. This means pain and fatigue, yet the inability to get the restorative sleep you need.
Whilst I don’t like afternoons mood-wise, they are the the peak periods in my day in terms of energy levels. At about 4pm I hurry to get an hour or two of household chores done, if possible.
- What I consider a daily self-care must do.
A nice, hot shower in the evening to wash the day away. It’s both a hygienic and symbolic ritual for me. A little treat which I now appreciate and enjoy daily, after I wasn’t able to shower when hospitalised for two months. And in a hot and humid climate like Singapore, that feels really gross.
- The household chore I have the most trouble with.
Mopping the floor. The ‘pushing against’ the handle with my hands causes inflammation, so my hands become all swollen after. I’m no good at scrubbing the toilet or changing bed sheets either :p
- A task I wish I had more help with.
A private chef would be nice 😉 I don’t cook as much as I would like, partially because I don’t enjoy it, and the other half of the time I’m in pain so it can be difficult. Some sort of delicious, affordable and nutritious catering service every day would be a nice option as well. Unfortunately the ones I’ve tried here don’t meet those full set of expectations so far.
- The part of the day I like best.
The wee hours of the morning between 5 – 7am, IF I’m able to even wake at all, which is rare 😉 My brain seems to be at peak performance and I can get a lot done. I also love how everything is so peaceful and unhurried during these few short hours, and how the air is so calm and cool. But let me repeat, it’s rare that I even wake at those hours, and if I am, it’s more likely that I couldn’t sleep due to pain!
- What’s breakfast, lunch and dinner typically like. Any diet protocols?
Breakfast is usually some bread from the bakery, or whatever’s in my pantry cupboard – nuts, protein bars, cereal, etc. Fairly typical.
Lunch is usually takeaway – there are lots of options here so there’s no usual fare. It could be Japanese today, and Italian tomorrow. Brunch food, fruits, local hawker fare, salad bowls, etc. I love bread and cheese, too!
Dinner varies as well, like lunch. But if we cook then it tends to be a simple rotation of one type of meat or fish, and some vegetables or salad. Pressure cooked potatoes with butter to go along if we feel like it. The occasional beef stew, udon mix, or Chinese soups in the pressure cooker. A whole black pepper chicken from the rotisserie is cheap and delicious, too!
No diet protocols for me, but I do need to watch my intake of green leafy vegetables and anything else that might interact with vitamin K, due to Antiphospholipid Syndrome (my blood clotting disorder).
- How do I unwind for the evening?
A hot shower, then dinner with a good movie or TV series. Some dessert or chocolate – I believe that every day should end on a sweet note (it’s a good excuse)!
I don’t have notifications turned on for social media on my phone, so evenings are mainly when I check in, clear requests, and interact. I also read more blogs and health articles, and schedule them via the Buffer phone app. This can be a slippery slope though, because it can go on forever if you let it.
I recently laid down some ground rules for myself in an attempt to clean up my sleep hygiene. I’m not a good sleeper and sometimes have nights on end where I’m literally half-awake and lucid dreaming. Medications that are meant to help can sometimes make the dreams more vivid instead. You wake feeling not just unrefreshed, but like you’re going insane because you can’t shut down your brain or escape from your body for even a second.
I’ve already been referred to the sleep clinic for suspected sleep apnoea and have a sleep study lined up, but both the neurologist and I agree that my evening routines could be improved. I’m one of those silly people who feels guilty when I ‘lie there and do nothing’, especially when sleep is the bedrock of health and life!
- Are you are able to do any exercise? If so, what do you enjoy and does it help with managing your pain?
This year has been bad for me, as I keep falling in and out of illnesses that have confined me to bed. It’s now June and I’ve only had a single month where I was feeling kind of okay. So no, I haven’t been exercising much at all. In terms of pain management when I was able to before, it didn’t really help with that. But it did help me to feel slightly more confident and happy that I was healthy, with a bit more muscle weight than flabs 😉
I mostly swam, though I didn’t quite enjoy it; I did it just to try and keep fit (and I hate running!). I much prefer playing team or ball sports, because it feels more like fun and games rather than exercise! But I can’t anymore due to my blood clotting disorder, as the contact can cause excessive bruising or bleeding. I also used to play some squash with my ex; that I enjoyed even though I’d go home with bruised palms.
- What helps with de-stressing in your day to day life?
Watching my birds chirp and just doing their thing makes me smile. Their lives are so uncomplicated and they’re easily contented. Writing is another big one; it helps me to decipher my actual thoughts and feelings. This relieves part of the mental burden, and maybe also with planning my next move in life. A blank future can be terribly pressurising, so it’s nice even to have just an inkling.
Having someone to talk to or crack morbid jokes with always helps as well. I love morbid jokes, it helps me to cope. It’s like telling a painful truth, but with defiance painted all over it. Also just knowing that there are people out there whom I can rely on at any hour brings me great comfort.
Finally, any opportunity to travel and escape day to day life always helps. The upheaval of routine lends perspective. It helps to unclog my cluttered thoughts, freeing up space within my mind and body for better things.
- If working, how do I keep sane with the work stress? If staying at home, how do I keep sane with the isolation?
Of late I haven’t been handling the isolation well, which is a surprise as I’m someone who needs a lot of alone time. I guess as human beings it’s innate that we need social contact every now and then. So I’ve been trying to meet all sorts of people more, even though getting out the door can be a monumental task in itself. These mysterious new headaches I’ve been having are like assassins that strike hard and fast, knocking me back to bed quickly.
- Do you have any pets and how are they are a part of your life?
Yes, six birds (plus three babies!). They make a huge mess every day with all the pooping and nibbling, but they make for lovely company. Our family dog of 14 years passed away recently from a cardiac arrest. She was a lovely girl that brought us so much joy with her warm greetings and unconditional love. Even whilst suffering from cancer and skin problems, her enthusiasm for life never faded. It makes me wonder why. Then it makes me wonder, do we even need a ‘why’? Life is beautiful despite it all, and definitely bigger than all my problems combined.
- People you see most often and your favourite thing to do with them if any?
My ex-partner/flatmate. It’s nice just chilling out at home. It’s also nice going for a simple brunch or fancy dinner every now and then. Or to the orchestra – I think that’s our new thing!
- If you got ‘normal people sick’, how much impact does that have on top of things?
Getting regular illnesses like the flu or a stomach bug can be like a giant wave that knocks you back for a while. We already live with pain on a regular basis, so any additional burden will take its toll. Also, the average healthy person has a functioning immune system, which may be deployed to handle that one attack. But we have a faulty defense system. It isn’t only fending off multiple fronts, but mistaking some of their own as the enemy. Resources are spread thin and we’re just trying to scrape through.
This means that the amount of time it takes for us to heal is longer. Perhaps you only need a week to recover from a bout of influenza, but for us it might take a month or more. The medications needed to fight off these germs may also interact with our current ones, which can prove to be a big problem. I’m not talking about tolerable symptoms such as temporary nausea or dizziness, but dangerous ones such as blood clots, excessive bleeding, serotonin syndrome, and god knows what else.
- If I could leap out of bed pain free for ONE day within my current environment and circumstances, I would…
See what it’s like to live a ‘normal’ day, packed with activities from dawn to dusk. Wake up early to do some exercise and study some French. Then get ready for work donned in high heels. Being productive at work while enjoying those coffees. Then meeting people for dinner or drinks after to ‘unwind’. I might even read a book before going to bed.
That’s probably quite a handful even for a healthy person, but not impossible. A good night’s sleep would probably be enough to recharge their batteries. But in my current state, I know for sure that I’d be exhausted after that first sentence was completed (if at all!). It’d be amazing, I think, to feel that kind of normal that people take for granted again 🙂
Thank you for reading, I hope that this was informative! CLICK HERE TO SHARE ABOUT YOUR OWN ‘DAY IN THE LIFE’, or to get a peek into other people’s lives!
*Note: This Q&A is meant for educational purposes, and is based on my personal experiences only. Nothing is to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.
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