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To Live with Chronic Illness is to Learn to Live with Maybes

To Live with Chronic Illness is to Learn to Live with Maybes | A Chronic Voice

Foreseeing

As this COVID-19 pandemic carries on, there is no foreseeable date as to when all this will end, if at all. I have a feeling it (and many other coronaviruses – there are over 500) will become more commonplace in the future, and vaccines will be developed to target them like the flu. Evolution and global environmental changes – which have been going on for eons – will go on still.

(Read: All You Need to Know About the Coronavirus From the Beginning to Right Now)

I suppose that leaves us with focussing on what we can foresee, instead of what we can’t. It’s a life lesson many of us with chronic illnesses have had to learn early the hard way, as living with chronic illness is basically living with unpredictability as a constant companion. Sometimes we get so used to it we panic when things are too ‘stable’ – can it be true? What horrible thing is going to happen next? It really messes with your psyche.

(Read Related Post: This is What Hell Must Feel Like)

I’ve been hard at work with my business site, and hope to launch soon-ish in a couple weeks. It’s been something I’ve been talking about for ages if you’ve been following my monthly prompt entries. Whilst I know it’s not the final solution to having a stable monthly income, it’s a start. I’m also not sure if it’s a good idea to link it back to my blog site, A Chronic Voice, but I did want to tie in the brand for social media. All I can do is try.

Panicking

To be frank, I’m not really in panic mode, though maybe I should be? My biggest concern is having an internal bleeding episode from random Antiphospholipid Syndrome issues now, and needing to be rushed to the hospital. I can’t ‘bear with it’ or fix that at home, whereas I’ve learned how to handle many other pain issues that come with my other chronic illnesses.

Apart from that, I’ve still been going for walks, buying things from the supermarket, etc, all with my mask on, of course. I do get a little edgy when there are too many human beings around, but apart from that, I try not to think too much about it.

Upbringing

I know this is a pretty random word to be stuck right into the middle of the prompts this month, but it called out to me. I find it a fascinating thing – upbringing. It literally shapes your entire life and character.

I was brought up in a very religious Christian household. My parents were missionaries, and now still work for the church or in missions. And as the eldest daughter in an Asian family, I was treated with the strictest level of discipline out of all my siblings, and given the most responsibility. I was trained for obedience, and it was naturally inbuilt in me as the eldest, as I always had to keep an eye out for my sisters.

After I fell ill, the typical eldest child syndrome started to fall apart. Whilst I retained some of the characteristics, I was no longer independent or ‘in charge’, so to speak. And the funny thing is, now that I’m 34 and the years fly by, I’m getting more and more rebellious. Not just in terms of family, but also with my health.

I’ve always listened to my doctors, tried to do the right thing for my health, and explored alternative options. But after 20 years of no-change, ‘a little fed up’ is an understatement. I’m living life a little more ‘dangerously’ now, and sometimes do things that aren’t ‘good for my health’. Yet these are things that a healthy person would hardly be judged for.

I’m tired of the need to always rebutt accusations that I could try harder, do better, do more – I have done all I can after all this time. And now as the years go by, I just want to let it all go and loosen the ‘rules’ a little bit. And yes, I still add a dose of caution in for good measure, due to fear of being in pain more than any other reason.

Accessing

So back to COVID-19 type prompts, ha. I’m really missing my online grocery shopping; it used to be so easy, efficient and accessible, but now all the delivery slots are full every time I check. Admittedly I’ve saved quite a bit because of this, but I do miss my cheese, organic meat and produce, and other pantry supplies that I used to order in a go online. Unfortunately, these aren’t things that I can buy from the local supermarket, which mostly sells Asian produce imported from nearby Malaysia. Or I would have to run around various places in Singapore, or pay a premium price instead.

Luckily, the food delivery services are still in full swing, although the options are more limited at my parents’ location. I’ve set aside Fridays as ‘party days’, which gives me something to look forward to in the week. I allow myself to order whatever deliciousness I want, and to relax more than usual. Speaking of which, tomorrow is Friday from the time of this post, and I can’t wait!

Finally, I really need to clean out my room. There’s too much junk in it and with things such as medications where it’s a neverending pile, this can be a disheartening endeavour. I’d like to spend some time slowly rearranging all the boxes full of stuff and creating pleasant little corners where candles and flowers sit. Perhaps upgrade my chair (it’s really hurting my neck, shoulder and back), and get a nice bedside table that’s easier to access.

It’d be great for my mental wellbeing and body both. Environments do play a huge role in how you feel and think, and with the need to stay in all the time now, it makes even more sense to spruce my room up a little bit at least.

Soothing

Ironically, I’ve been going on more nature walks than usual with the lockdown. My week is usually packed with doctor or other appointments, and I enjoy going to cafés to work for a change in scenery. It keeps me productive and a tiny bit more active. Now that I can’t hang out anywhere outside, I’ve started a little late afternoon walk ritual with my dad. It’s been quite pleasant and a nice break, otherwise I tend to work nonstop; I admit to being a productivity-based person, which can be unhealthy in extreme measures. I feel guilty or stressed out if I haven’t done enough ‘real’ work for the day.

These nature walks have been soothing with all the trees, flowers and animals. I’ve uploaded a few pictures to Instagram to share for some armchair Singapore Nature Walking (scroll right on the widget) 😉 I hope you enjoy them as much as I enjoyed the walks. Stay safe my friends! x

Thank you for reading, and I hope to read your responses for May’s prompts too. CLICK HERE to submit your own entry, and to read about what others are up to as well!

*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.

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To Live with Chronic Illness is to Learn to Live with Maybes | A Chronic Voice
To Live with Chronic Illness is to Learn to Live with Maybes | A Chronic Voice

16 comments

  • Sheryl,
    Chronic illnesses often do train us to expect a constant state of flux, don’t they? What each of us can do can vary so much day to day or month to month – and how doing it feels does too!
    As a fellow older sister, I get it. My family was a bit different dynamics though as my younger sisters are twins and I have always been pretty severely nonstandard(not particularly rebellious, just going to the beat of my own drummer). As adults, one of my sisters and I are both disabled and not straight, and our other sister teaches special needs students and has four kids! So, in a good way, we all do what we can to help each other and enjoy the kids.
    Walks are wonderful things, aren’t they? I try to go for a walk most mornings(sometimes it turns into early afternoons) on the nature trail right by my home. I’m doing my best to just enjoy the company of our cats and take things easy, one step at a time. But it is scary right now where I live – things are starting to be opened up, even though nowhere near enough testing or tracing has been done. My partner and I are in agreement that we’re going to continue to minimize our exposure, which unfortunately means there isn’t a whole lot we can do because people are being stupid and crowding a lot in public spaces.

    As always, thank you for the lovely post and for running this whole link party!

    • Thanks for reading and commenting, Alison! Yes family dynamics can be a strange thing. Every family is so different. I agree with your decision to continue social distancing and being careful. I think there are too many irresponsible people out there and all it takes is one or two to create chaos. Stay safe my lovely friend x

  • “I suppose that leaves us with focussing on what we can foresee, instead of what we can’t. It’s a life lesson many of us with chronic illnesses have had to learn early the hard way, as living with chronic illness is basically living with unpredictability as a constant companion.”

    So beautiful, and said with such eloquence and truth. The unpredictability of living with such illnesses is genuinely one of the hardest aspects to have to learn to deal with, and perhaps harder for those closest to us to understand.

    Your posts are always such a pleasure to read Sheryl, with such beautiful and powerful imagery conveyed in your words. And thank you for sharing such entertaining videos and gorgeous photographs, they were such a pleasure to see while stuck inside during lockdown!!

    Take care, Rhiann x

    • Aww…thanks Rhiann, especially coming from such a great writer such as yourself! I am glad those words were relatable. I hope it made sense and helped to illustrate it to healthy people, too. Those happy videos I’m glad I posted them. This month, it’s an all too different beat 🙁

  • Hi, Sheryl! I loved your bird videos and I’m going to check out your Singapore nature walk photos. Have you gotten your bird back yet? I was saddened to hear of his being lost. I lost a beloved blue parakeet when I was a child. I love reading your posts.

    • Thanks for your kind support in every which way, dearest Kathy. I so very much appreciate it 🙂 No, he is still somewhere out there. Let’s hope he finds his way home soon, my dearest little baby boy 🙁

  • “I suppose that leaves us with focussing on what we can foresee, instead of what we can’t. It’s a life lesson many of us with chronic illnesses have had to learn early the hard way, as living with chronic illness is basically living with unpredictability as a constant companion. Sometimes we get so used to it we panic when things are too ‘stable’ – can it be true? What horrible thing is going to happen next? It really messes with your psyche.”

    I loved this. I think most of my friends and family really don’t understand the unpredictability of being ill all the time. It drives me crazy trying to figure out if I did something or if it’s just my body saying no. I’m trying really hard not to think about the ‘whys’ anymore and just accept. Not having control over my body has made me a bit worse with keeping things organized in my home though. Everything is in its place. I got rid of A LOT of stuff in 2017 when I decided to go through everything and get rid of what reminded me of my 20s. It felt really good, and it also reminded me of how much stuff we collect. I came to Taiwan with a backpack. How did I get all this stuff?! 🙂

    What a great way to recognize the weekend. Fridays are usually my full rest day. That’s my day for reading other blogs and connecting with a few friends online. Maybe it’s time to change things up. I can relate to being a little rebellious after being so strict for so long!

    As an aside, I’m so glad I did some extra digging here because I thought your prompt ideas this month was your post for May. I don’t know if that’s brain fog or not, but really glad I exited that post and came to the main page to read other entries!

    • Hi Carrie, yes it can really mess you up mentally! I needed a psychologist’s help to get rid of that faulty thinking. Acceptance is definitely a huge (if not the biggest) tool in my toolbox to cope with unpredictability and chronic pain. It actually is stoic philosophy, which many people don’t link to, and think is defeatist to do so.

      Yay for Fridays (it’s Friday today!). Ordered my usual salmon, avocado and quinoa meal with lychee rosewater cake. Lol. Yummy!

  • Party Fridays are so cool I like the ritual it involves, scouring the menus, the anticipation will it ever get here? Plus hopefully luxurious pjs for the special occasion. I love Horace he woke my cat up immediately with his little song 🙂

    • Haha yes, gives me something to look forward to in the week. Even though I haven’t worked full-time in an office for years, it’s just a little psychological thing stuck in my head. Anyway, still a good day to relax (extra)! And I bet your cat wanted to pounce on Horace haha 😉

  • I like that you have ‘party’ time on Fridays, I think maybe that’s something we could do to make things a little more exciting around here and distinguish the end of the week. I’m homeschooling three kids at the moment and it’s hard work. I think I deserve a treat at least.
    I love your birds. We always used to have birds when I was growing up, my Mum hated cats. Now, we have no birds but two cats.

    • Thanks Anne! Yes it helps to distinguish the change, change up the vibes and mood, gives something to look forward to, and the best part of it all is that it doesn’t have to be complicated! 🙂 For me it’s just nicer food than every day sustenance haha. And allowing myself to ‘let go’ more than usual.

      Thanks my birds are a blessing to me 🙂

  • I loved meeting Horace and Scorcher! So cute! It’s funny to see that they have such personalities. I can see why you find them soothing.

    • Yes Scorcher (daddy) used to be more playful. After he had two batches of kids he’s grown up fast lol. Horace is pure cheekiness 🙂 They are fun 🙂

  • My household consists of a gamer and two bloggers, one of which also works fulltime outside the home. We started taking family walks every night to force us all to take some time away from our computers. I hope to continue doing this long after the lockdown is lifted. It’s nice that you have your dad to walk with.
    Enjoy that time with your dad and keep sharing pictures! I can’t get over how green everything is. So beautiful!

    • Yes! Someone seems like more of us are spending time in nature (I guess instead of cafés and malls) because of this COVID-19 pandemic. The irony, but I guess good in a way! And yes, I noticed that too when I looked at my Instagram. Everything from the 3 months in Europe was a different mood and filter, a little grey and drab but moody in a nice way. And back in tropical Singapore everything is lush and green and bright, heh.

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