CLICK HERE to submit your own entry, and to read about what others are up to as well!
myself to listen to my body a little better…again. So I was in the hospital again last week. As you may already know, managing chronic illnesses is all about the balance. While I’ve gotten quite good at telling the flare forecast after 20 years, I still slip up every now and then.
It wasn’t even a huge event that triggered it, but the miserly impact of a week’s worth of sleeplessness. As I didn’t have many appointments that week, I figured that the ‘healthier’ option was to wait it out without the help of medications. Sometimes burning mental or physical energy helps, so the day before I had a mega flare, I was up from 5am until midnight keeping myself busy. Yet sleep was still elusive. When you haven’t had a major flare for awhile, you tend to forget that yes, it’s possible to end up in hospital for no good reason again. Anyway I’ll elaborate in another post as this recent stay has reminded me of many other important lessons as well.
my limited edition spoon supply. With that, everything in my daily todo list that I stress over (for no good reason, really), went out the window without second thoughts. That was another important reminder to stop sweating the small stuff. Nothing bad is going to happen if I don’t do them, yet the senseless worry accumulates to impact my health negatively.
I struggle to relax, as ironic as that sounds. I like running on adrenaline. Before I fell ill, one of my favourite feelings was working on a project for days on end with barely any sleep. We’d work all the way until 10am the next morning, go home for a nap, then do it all over again. I’d end up getting high on tiredness (yes that’s a thing). Looking back that was foolish, because now I understand just how toxic stress is for the body, even for a healthy person. People with chronic illnesses are just more sensitive to its effects.
Despite having all the time in the world to arrange my schedule as I wish, I struggle with pacing myself. I can easily spread myself thin, but not spread myself thick, if you get what I mean. Perhaps it is a matter of habit and discipline. Thinking about it, slowing down requires more discipline than speeding up. The latter can be motivated by fear, but the former requires a constant, conscious choice.
and not struggling to sleep. Back to the topic of sleep. I need to learn how to surrender to it like in the good old days. If you came from a time before smartphones, I’m sure you remember shining a torch light under the covers to read a book, or simply counting sheep, or playing word games in your head to entice the dark blessing of sleep. That’s definitely healthier than scrolling through social media, both on a physical and mental level.
I read an article which highlighted an interesting problem about sleep hygiene. We tend to treat it like a goal these days. A target to be met. But sleep isn’t something to conquer, and shouldn’t be a task on the todo list. It would be nice to surrender myself into the arms of sleep like when I was a child, without any formulations such as, ‘I must fall asleep before X a.m.’, or ‘I need at least Y hours of sleep’. It shall be treated with respect, the quietest time of day to allow my mind and body the space to let go and be free.
my regular diet. I’ve discussed this with my partner, and we’ll start working with a nutritional therapist once I’m feeling better. I’ve avoided manipulating my dietary intake too much due to Antiphospholipid Syndrome. Many beneficial herbs, supplements or foods can easily mess my blood up, leading to deadly blood clots or internal bleeding. But I’ve also gained more knowledge over the decades, so I think we can start working on nutrition slowly.
I do have time to cook, but I don’t enjoy it. My other bad excuse for eating poorly is the convenience of food deliveries and takeaways in Singapore. You can get food delivered at all hours of day, sometimes within 15 minutes. Like I said, these are bad excuses, which aren’t valid if I care about my long term wellbeing 🙂
Oh and another thing that I’m working on are my writing skills! I signed up for Catapult’s “4-Week Online Nonfiction Bootcamp: Writing Personal Essays with Substance”. The instructor is Lily Dancyger, who is the Deputy Editor of Narratively, which is one of my favourite online magazines.
I love to read first person real life stories that flow like a novel, but it’s a genre I struggle with. The programmer in me emerges to classify and assess the accuracy of every little detail. I hope to apply what I’ll learn from this course to my own life stories for this blog (and perhaps for a book?!) 😉
with grief and life. Finally, to my surprise, it seems like I’m still affected by the death of my dear parrotlet, Archer, and his five little chicks. Every morning when I wake up to check on my other birds, my first thought is, “are they alive or dead?”. Not exactly a normal ‘parental concern’, I don’t think, but parrotlets do go fast due to their diminutive size.
Grief is also something that ebbs and flows, and isn’t reserved for solely human beings. It could be a pet, an object, or even a circumstance that we grieve for. There are important spaces within our hearts that we hold for things that mean the world to us; they’re like thumbprints for no two spaces are ever the same. They shift and shimmer, reshape and change over the years. Sometimes these special spots can never be replaced, and remain empty forever. But love is like a soothing wave that rolls across the vast ocean of our hearts. Sometimes the holes are awash with the beauty of our memories, and at other times they’re left void. But the awareness of that space remains, no matter what state it’s in.
Thank you for reading, and I hope to read your responses for June’s prompts too! Click here to submit your own entry, and to read about what others are up to as well!
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Pacing is a struggle for us all! Thanks for creating the link up parties I am loving how they connect people with the same experiences…
Judging from *every* single response in the June linkup, not one of us isn’t struggling with pacing! We all want to live our lives I guess, and it can be frustrating to always have to pause and weigh everything every step of the way. I also love how we all have similar experiences in our different lives all over the world. Wishing you all the best! x
Sheryl, thanks for hosting this link up! As always, I enjoyed reading about what’s going on in your life, but I’m sorry to hear you’ve been in the hospital again. I hope you’re getting some rest and starting to feel better. Like you, I struggle to relax. Even if I’m perfectly still, my brain is going 100 miles per hour! The curse of a Type A personality I guess….
It’s not surprising you’re still grieving the loss of your parrotlets. Grief is a process, and the feelings of loss don’t disappear overnight. I am sorry for your loss, though, and hope the pain lessens as time goes on.
Your writing class sounds really interesting. I hope you’ll let us know how it goes – I know I could definitely benefit from some instruction. :o)
Hi Terri, you’re most welcome! It’s a pleasure to host them 🙂 No worries, I’ve been better since I’m out, though in a bit of a depressive funk, but like you said in your own post, this too shall pass! 😉
So true…even when I’m ‘resting’ my brain is not, so it isn’t really counted as rest, is it! 😉
I’m getting better with the birdies, but it’s just nice to even think about them sometimes, happy or sad 🙂
Just had writing class today, interesting but not sure it’s worth the money 😉 I’ll conclude at the end of it all and let you know! 😉 Have a fab weekend!
Sorry to hear you’re struggling with flares and sleep trouble. Your writing class sounds interesting. I’m having enough just to keep up with my blog. I don’t think I can add anything else right now. Take care of yourself.
Hi Kathy, you’ve definitely got your hands full with your house and everything! Yes I will try to take care of myself, thanks for thinking about me xxx
Hi Sheryl. I really enjoyed reading your June Linkup post. I can especially relate to pacing – like I’m sure most spoonies, we find it a real struggle to pace ourselves properly, but it is so important for health (physical and mental) to be able to do so. I liked how you identified that it takes more discipline to pace yourself than it does to try to get everything done quickly!
Sorry again about Archie and the chicks, but thanks for sharing your thoughts and feelings on the grief that comes from loss and I hope you’re doing okay. X
Hi Kate, thanks for reading and commenting, I appreciate your feedback! 🙂 Yes! Pacing is a tough one for just about every single one of us, I dare say 😉 It definitely does feel like more discipline is required, to filter out judgment, both upon ourselves and what others may think. And also to do what’s best, which may not always be the most fun! Thank you, I’m feeling okay really, but sometimes I just miss the little blue brat 😉 Hope you’re having a great weekend! x
Love reading these posts and wish I could participate every month but the joys of having an illness that limits what you can do!
Pacing is something that I also really struggle with, and wish I could a lot more than I actually do, but at the moment whilst preparing to go on holiday I am struggling with this due to all the washing, ironing and packing there is still to do! Trying to listen to my body but still, I’m experiencing times when my legs just go from under me because of doing too much.
Best of luck with the course sounds amazing! You are a great writer anyway but hope you find that you get a lot out of it, and are able to put into practice everything you learn!
Sending best wishes
Thanks for the support – that is also a huge contribution! 😉 If you like you just need to write with a minimum of three prompts, and a few short sentences will do! No pressure of course, but would be nice to read about your chronic illness life, too 🙂
Wow, where will you be travelling to? I know what you mean with all the pre-prep chores, it can be exhausting! I hope you are coping decently, and that you have a really good time on your trip!
Heh, thanks for the compliment 🙂 There’s always room for improvement, and personal narrative is definitely not my strong point, but something I love to read 😉 Let’s see how that goes! xxx
I love these posts!
I especially like the section about your diet. I’m going to do a post in the near future about how diet can affect us and the impact this can have on chronic pain/chronic illness.
I’m looking forward to next month’s Link Up Party already 🙂
Thanks Alice! Diet is something I get lazy with heh, but so important! Looking forward to your post about how it affects you! And aww…I’m really happy to hear that you’re looking forward to next month’s prompts. I wasn’t sure if people liked them/found them useful! If there’s a particular prompt you feel strongly about for whichever month, ping me and we’ll see if we can add it in! x
Loved reading your post!
Can you write a whole post about spreading yourself thin vs. thick?!
Enjoyed your reminiscing on nights before there were cell phones. (Reading with flashlights.) (Talking on landlords in the relative dark). (Not scrolling away into the night.)
Hear you, missing Archer and the chicks. So hard. Hope you’re hanging in, and that the babies are doing okay.
And wow, this whole quote: “There are important spaces within our hearts that we hold for things that mean the world to us; they’re like thumbprints for no two spaces are ever the same. They shift and shimmer, reshape and change over the years. Sometimes these special spots can never be replaced, and remain empty forever. But love is like a soothing wave that rolls across the vast ocean of our hearts. “
Thanks Dov! Haha…perhaps I shall! Someone else mentioned it was interesting, too.
Yes!! I miss those days 🙂 There *is* gratification when things are harder to get, in a sense!
Yes, life goes on despite death and I’m not depressed or anything, but sometimes I miss the fiesty little sucker 😉
I can relate so much to the sleeping issue. I want to control everything but sleep is something that comes naturally. If I have to get up early and I can’t sleep I tend to stress and worry about how I’ll feel the next day. But lately I’ve been trying to let it go and remind myself that even if I don’t actually sleep, I’m still resting and closing my eyes which is just fine.
Exactly, I do the same! I try to close my eyes and tell myself that I’m still resting, which is good for me. It was something my dad taught me when I was in my teens heh. I hope you get better sleeps this week (and beyond!) 😉 x
Great post – I could identify with everything (except your programming expertise, an area I have zero skill in!). Look forward to hearing how the writing course goes! Lowen @ livingpositivelywithdisability.com
Thanks, Lowen! The prompts are my more ‘freestyle’ posts heh. I tend to edit my posts to death 😡 Thank you, I’ll let you know how it goes! x