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Most of us spend lots of time meeting a selection of doctors, even though we’d rather be well enough to meet our friends or family. Some of us don’t like meeting people at all, or maybe you meet a lot of weird folks on the street.
I’m cheating a little here, because I met Carrie in September. She’s from Canada but has been living in Asia for 16 years! She has Ankylosing Spondylitis and other chronic illnesses, and currently resides in Taipei, Taiwan. As you probably know if you read last month’s entry, my mental health hasn’t been the best of late. So I decided to tag along on one of my partner’s work trips for a breath of fresh air.
Carrie and I had a nice chat over coffee and pie, and it was refreshing to meet someone who just gets you. No explanations needed when you do things that are out of the norm, although I’d say we pretty much behaved like normal people while there! 😉 I was grateful she used her last spoon (even pushed it!) just to meet me, as she had a tough week taking care of her caregiver who had a surgery. Don’t forget to check out this talented lady’s beautiful ikebana creations on Instagram as well, they’re always a feast for the eyes!
You can be an advocate online, offline, or simply support those who do so. You can take action and share their posts, give them constructive feedback and encouragement, or simply take the time to read and understand. You can also stand up for a friend or a stranger in need, and rather sadly, we need to advocate for ourselves at hospitals and during doctor appointments sometimes.
A local florist, Floral Garage, found my website and approached me via email. We had plans to conduct a floral workshop for those with chronic and autoimmune disorders in a bid to raise awareness, but unfortunately we didn’t have enough participants.
Sherry is another fantastic advocate in Singapore who runs a local Facebook group for those with autoimmune disorders. She does a lot of work speaking up and bringing attention to these issues during meet-and-greet sessions with parliamentary members. We had plans to use this event as a resource for future reference as well, but I suppose the timing isn’t right just yet.
So now we’ve decided to send out bouquets to four people who would be up for a short Q&A on the blog. Hopefully this works out; baby steps toward a better future for the chronically ill in Singapore.
Life with chronic illness means that your mind and body is in a constant state of flux. We often make tiny tweaks or big changes in hope that our health improves, even just a little bit. There are also a million things apart from our health that you can tweak, both external and internal. A body piercing perhaps? Or maybe your home decor, sleep routine, exercise sequence, a hobby, etc.
I’ll begin tweaking my eating habits this month, based on my gut bacteria report from Thryve Inside. While it isn’t a full snapshot of what’s in my gut as there are too many factors at play, it did made me realise that perhaps my diet isn’t the most optimal. More specifically, how as a patient with Antiphospholipid Syndrome I’m told to avoid or moderate my intake of foods containing vitamin K. I need to avoid green tea for this reason, and eat sparing amounts of certain foods and fruits, such as avocados and salad bowls. Yet these foods contain beneficial bacteria that I seem to be lacking.
I can’t gorge on these foods for obvious reasons, so I’ll need to tweak my diet in tiny bites, literally. I expect my medication dosage to shift based on these changes as well. While it may be a hassle, I’d like to test this theory out to see if it makes any difference. Perhaps it’s another wild goose chase, but what harm is there in eating more greens, if I do it in teeny tiny baby bites?
Many of us with chronic illness aren’t able to hold down a full-time job, or even have a career at all. Working becomes a health hazard, as the stress triggers pain flares that sometimes require hospitalisation or lengthy recovery periods. Working on our health is often our biggest job in life, yet many of us dream of a normal life, where ‘too much work’ is a ‘luxury problem’. You could also work on a new project, skill, or even character traits and habits.
Recently I’ve been trying to find more work, and have also been pushing myself to re-establish my web development business, but with a simpler spin to it. Unlike the days of my youth, I no longer seek the adrenaline rush and recognition from cutting edge projects. They were fun while they lasted, which is to say, like puffs of cigarette smoke.
But that was enough to leave my body in ruins, and the wreckage it left behind took me a long time to clean up. In fact, I’m still tidying the mess up to this day. If I were going to destroy my body (literally, because inflammation levels would rise and perhaps stay), then I’d rather spend it on something life-giving, such as trying to start and maintain a family in future.
October was a fairly busy month for me in terms of work, which was both good and bad. I was reminded of why I had to stop working full-time in the first place, as I woke up with joint pain and inflammation after working 10 hours (but only for a day). I actually find this low threshold for stress somewhat fascinating; how my body is so reactive and temperamental, almost its own entity separate from my will and desires.
Yet doing this has also boosted my self-esteem a little, as I realise that not all my skills have been lost. This gives me some reassurance that I could pick up from where I left off, should I choose to work full or part time in this industry again. As they say, the best way to boost your self-esteem is to dive right in – right?
My ideal mix of work for the moment would be full website integrations, complete with copywriting and/or a blog section. Hit me up if you or someone you know may need such work done 😉 Whilst it’d be nice to write sponsored posts on my blog alone, unfortunately that only brings home a few small packs of bacon.
Perhaps not to the level of a museum curator (although bonus points if that’s what you do!). But these days online curation is pretty commonplace. You could curate your Pinterest board, or content where you source for good reads or useful information to share. A page I look at every day is Useful Interweb, and some much-loved online curators are Brain Pickings and Notcot.
Apart from writing, I love to curate content for my social media accounts, especially for my Twitter feed. Call me weird, but I get a sense of satisfaction when I organise my hashtags, timings, and even types of posts in an orderly manner. I even think I could get a job as some kind of content curator, if someone would have me 😉 Perhaps it’s to do with feeling in control, because my illnesses leave me feeling helpless a lot of the time. (Read: This is What Hell Must Feel Like)
Unlike other social media platforms, Twitter is awesome for finding some great blogs and niche content, once you get the hang of it. Even though it can sometimes be discouraging when people choose to be trolls, I just need to weed them out and continue to work on the things that matter.
Just like a garden, everything on social media is reliant on interaction. It’s important to establish yourself and plant the right seeds of what your online presence is all about. Providing nourishment takes effort and must be done with loving care. You also need people to land on your content, interact with it, and carry them far and wide in a combined effort to raise awareness. Sending good thoughts to each and every one of you out there 🙂
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