Starting Somewhere (Again)

As of late, with crazy weather changes and difficulties eating, I’ve found myself not being able to do much. Feeling sluggish and fatigued, weak, in pain … The chronic list goes on. I seem to also finally pay attention to this blog at these times too, as I have little else I can do and feel more introspectie, I suppose. I’ve got somewhat of a schedule at the moment, but it’s so dependent on energy and pain levels, that I’m trying to come to terms with being more impacted than I wanted to believe.

In the meantime, I’m trying to balance learning four languages (French, Indonesian, Mandarin and Korean), and that includes listening practice. How best to do that (for me)? By watching dramas and Youtube videos, of course! So I thought, why not, in my spare time/times when I can do little else, write reviews of these shows I’m watching – even ones I’m not really interested in or just watching for the sake of practice – and see if people find it interesting or useful? I love dissecting and discussing TV and film, so maybe I should just put it out there, to the void and continue with this blog as an outlet, although my focus is more on working, streaming and travel (or wishing to while being stuck atm).

While I’m unable to do those things, however, I can always lie down and watch something (more often than not, to distract myself from discomfort, nausea or pain). Maybe some of these reviews will not be everyone’s cup of tea, or be ‘on brand’ or wtvr, but I think there must be some people out there who will be trying to find a recap or review in English of certain shows (because I myself am one of them, most of the time, trying to see if anyone else knew what a refernence was, or what the heck is going on, or whether everyone else is just as confused as me!) and not be able to find it.

Hopefully I’m not making grand claims (again?) of what I intend to do with this site before promptly forgetting or getting too busy/overwhelmed, so fingers crossed! Also, please do let me know if there is anything you would like me to review. That would be such an honour! Stay tuned!

Use Your Bad Days to Rest

If you follow me on Instagram, you may have seen me post the other day in my stories about being a little distressed to find out I had less control over my fingers and hands, leading to wonked up eyeliner (which was extra frustrating as my eyes have been super sensitive lately, and it’s only sometimes that I’m able to put any makeup on them). That may sound like a minor inconvenience, and I would agree that it is, in the grand scheme of things. However, something I’ve reconciled with having bad knees and mobility in general is that I now use my hands to be productive; for typing work primarily, and then gaming on Twitch, blogging here (however sporadically), teaching myself needlework, graphic design, writing, cooking and cleaning at home. Having poor hand control and proprioception has been a gradual thing, but today it came to a head. It’s quite a scary thought to realise that you can no longer do things you once took for granted, or that are normal, when you think you basically are normal. You don’t look different to other people, and so they judge you harshly on saying ‘no’, or not being able to do normal things, because it doesn’t look like you can’t, it looks like you won’t. And so you get used to trying harder to do these normal things, and it works for a while … Until it doesn’t.

My hands are usually stiff and tender and don’t really work for a while in the mornings, which is something I’ve gotten used to over the past couple of years, when it first started. Today though, I had my usual weak coffee to acclimate to being awake and upright, did the washing, worked out, had a shower, did my makeup (slightly wonky but overall acceptable) and then went to make myself some brunch. When I went to get my super health soup out of the microwave, I knocked over the glass pitcher of tea on the counter. I saw it happen in slow motion, but my hands wouldn’t respond. It smashed on the tile floor and literally went everywhere. Hot tea, giant teabag, huge pieces of thick glass over the kitchen floor, into the living area and even into the bathroom. So, I get out the dustpan broom and sweep up what I can, spreading the tea everywhere, take it out to the bin, then I decide I might as well do a general clean because I want to become an amazing housewife and keep on top of cleaning in the smaller house I’ve moved into. Also, mopping has been pretty unsatisfactory, so I bought some kneepads from Bunnings because I’ve had three knee operations and Osgood Schlatters and planned to scrub on hands and knees to properly clean my floor to Korean eating-on–the-floor standards.

So I’m wiping down all surfaces, slicing my arm on a corner here, taking a chunk out of my knuckle on the water filter there, get rid of all dust and start feeling a bit better until I clean the sliding glass doors and see all the debris in the bottom that I would have to move the couch out of the way to get to and decide to do the runners of all the windows/doors as their own chore next time. Then, onto proper sweeping with the big broom (to be honest, far easier and more manageable than the cute and you’d think better dustpan broom) to get any remnants of glass and dust, and finally onto trying out the kneepads. 2 scrubbing brushes, one for the grout (that seems to mysteriously disappear, as when I moved in, there were random holes leading to what I can only assume is the Borrowers* house in them) and one for general scrubbing which didn’t do anything for any marks apart from when I used the handle to scratch off anyway, a sponge, enormous gloves that reach my elbows and a bucket with vinegar and sugar soap in hot water, and I was off.

The Scholastic The Borrowers book cover by Mary Norton; a top down view through the floorboards of the Borrowers in their bedroom, shocked and looking up towards the viewer.
I decided to add the link to the Wiki and this photo, as B had no idea what I meant by the holes in the grout leading to the Borrower’s house – didn’t everyone watch the Borrowers, or at least Arrietty??

Well, it was excruciating. First of all, although the kneepads help somewhat with my knobbly knees, it’s still pressure on scar tissue, bone fusions and nerve damage, so it wasn’t the most comfortable, and then all my weight was on the balls of my hands while my fingers crunched up to grip the scrubbers. Long story short, half the floor done, a mini meltdown and bruised and swollen knuckles and wrists later, I’m on the couch eating chocolate and typing this, despite the pain and clumsiness. I’m starting to realise that perhaps taking it a little easier with work on my hands and eyes and trying to balance health and housework with work is not really enough, and I’m not sure what I’m going to do if it progresses.

I’ve been to physios, doctors, OTs, podiatrists, ENT specialists, endocrinologists, OBGYNs, counselors, surgeons, and gotten just about every bit of advice I could expect, and yet … And yet, there just isn’t a solution or a real help the majority of the time, not that I can blame anyone. They’re doing their jobs with the skills and the knowledge they have and following the exact protocol any expert would advise. But at the end of the day, it doesn’t help someone like me, or not enough, anyway. If I go back to the hand occupational therapist and they tell me to wear ring splints and wrist guards, well, I already do. I already do exercises every day, I already know all the advice, and so what else can they do? Charge me and send me on my way and not give it a second thought.

Something that gets repeated in the chronic illness community is that there is no Dr House who’s got a team of doctors that won’t stop until they’ve gotten to the bottom of whatever is happening, and find a miraculous solution that enables the patient to go back to better than normal lives. Even if there were, it’s unlikely that most people could afford that or would even be willing to keep trying every treatment under the sun. Most chronically ill people never just have one condition; the treatment for which usually interacts or is contraindicated by another. It’s just exhausting.

As for me, today is a frustrating, exhaustive and dark day, when things seem hopeless. If I hadn’t pushed myself when I didn’t feel the best, I probably wouldn’t have been so clumsy or uncoordinated. But I did do some things. And tomorrow, I will probably feel different and make different choices. It’s just one of those days when one bad thing snowballs into the next. So right now, I’m going to enviously watch some cottagecore videos and perhaps Secrets of the Castle with the electric blanket my aunt sent me because it’s about 7 degrees here, and let myself see this bad day as a sign to rest.