Making a Living With a Chronic Illness

In yet another somewhat embarrassing post, I’m going to keep going with this authenticity thing.

I find that I get really excited when I find someone even mentioning things I’m always trying to find answers for that aren’t sanitised beyond usefulness. I think either most people don’t want to admit or tell the full story about their situations, or they go overboard and go down a rabbit hole, and spin out into a negative outlook for their life. There’s nothing wrong with being private, of course, I myself am a very private introvert, and I do understand why people don’t want to show the most vulnerable parts of their lives, but when every person is pretending something isn’t an issue for them, it makes everyone else feel more and more isolated and alone. So, I’ve decided to share what I can, without being too personal, in the hopes, as always, that it could be useful.

Now, this may be a somewhat misleading title, because it implies that I have a definitive answer for how to make money or survive in today’s world with a chronic illness. I don’t. Let’s just put that out there. But it does tie in with what I want to say about it, which is this.

I have always thought that I was an unreliable person. But how could I explain all the times when I was super focused, super organised, on time, and perfectly scheduled (only for it to fall apart after a week or two)? I didn’t even consciously realise until recently that it was actually part of being sick. I could be ‘on’ for a few weeks and wonder why I’d been lazy and go above and beyond until I inevitably crashed for a few days, or a week, or more, and friends, family, school and work would become frustrated with me. Wondering why, justifiably so, I wasn’t my usual self and coming to the conclusion that it was a psychosomatic thing, or me being self-indulgent or lazy, or a moody bish. How could they know, when even the many doctors I would see couldn’t explain?

The fact is, that I cannot be relied upon, whether I feel that’s unfair or not. That’s just the reality. I’ve been working with my doctor and job centres to try and find what I actually can do, since, obviously, I can’t just do nothing with my life. I am a qualified Beauty Therapist, but there is no way I can be on my feet all day, let alone massage or hunch over to do nails, so what kind of salon would want to hire me? Everything, including my current studies are on hold at the moment, on doctor’s orders, for the same reason; I can’t foresee when I’ll have the energy or brain function to get out of bed or even read more than a couple of sentences over and over while absorbing nothing, or when I’m able to do it all and clean the house and do the shopping and exercise and whatnot. That is a huge issue when I have an exam or deadline for something, because my body doesn’t give a ship when it goes into meltdown. How can I possibly expect someone to hire me when I will randomly be fine and then the week after I won’t be seen or heard from?

Well, I don’t expect that, at all. It’s not fair to them, and the amount of stress and guilt I feel for it doesn’t help me, either, as stress makes all my symptoms worse and sends me right into a flare, which means I’m even more useless.

So, my decision is to do what I can. I had to sit down and face this, and ask myself exactly what I realistically thought I could do – maybe for the rest of my life, maybe until I can get things under control (if that’s possible). The answer to that is that there’s no one thing. If you’ve been reading any of my posts, you’ll realise there are gaps between my posting and activity, not only because of being ill, but because of self-doubt; that anyone would actually be interested in anything I put out there. But if I can look at the things that engage my passion, that I find I am able to do most regularly, it would be:

  • Playing video games – I’m not very good at them, but they’re something I’ve come to find I love, and that I can do when I don’t have the energy or mental capacity to do anything else, and yet feel like I’m at least not doing nothing;
  • Writing – Apart from sporadically writing posts here, I’m currently working on a couple of books that I’m trying to figure out how to publish and illustrate for;
  • Makeup and skincare – something I didn’t just study for, but also keep up with and have an active passion for;
  • Cooking and nutrition – another thing I constantly read about and try to learn about, as well as try out. This is difficult however, as I find if I spend an hour cooking, without even factoring in the clean up, I’m absolutely done for the day. No writing, sometimes not even video games-done;
  • Languages – I am obsessed with learning languages. If anything, it’s my hobby. I’m currently actively (as opposed to the other languages I’ve put on hold) learning Indonesian, because my fiancé is Indo, and Irish, since I’m basically 100% Irish, according to DNA tests, and I find it sad I don’t have any cultural identity;
  • Exercise – this sounds ridiculous for someone complaining about not being able to do anything, but even if I can’t get down the stairs and have had to take a break from everything due to tendinopathy in my knee at the moment, I can still usually do an hour on my stationary bike almost every day, and have a whole book of physio exercises I not only want to do, but have to do every day to stop my muscles atrophying immediately, or dislocate;
  • History and mythology – I suppose this ties in with the writing point, but I am obsessed with history and folklore, especially ancient, and almost had an existential crisis when I watched Loepsie’s video on how she was doing Celtic Studies – something I never knew was even remotely a possibility. If I had known that 10 years ago, my life would have turned out very, very differently;
  • Film – I love film, or good TV, I love being able to experience the way something was shot, or how a story was told, and let’s face it, when you are chronically ill, you spend a lot of time watching TV because you’re unable to do much else, but you still can’t sleep, dang it! >:|;
  • Travel – before even leaving my hometown as a child, I wanted to travel the world constantly, and even though it’s very difficult being ill, the amount I have been able to travel in my life already has shaped me into the person I am, opened my mind, made me more tolerant, and given me a wanderlust for the rest of it. I actually already made a video about our trip to Japan a couple of years ago, and am making a new one on our last trip to Melbourne. It’s something I wish could actually be my full time job, as I never want to settle in one place for very long

What in the heck would I even be able to do with these things? Traditionally, probably not much, without doing a degree overseas in history and then not having much of a field to actually work in, for example. However, I figure if I combine them all into what I’ve already started here, and make that my full time job, that’s the best thing I can think of doing. There has to be other people who share the same interests as me, who want to learn about things I possibly know about or want to listen to, read or watch my experiences, right? That’s what Youtube, blogging and any social media platform is really about.

I have no idea how to approach it, but regardless of whether I am able to get and hold a ‘real’ job (god, you have no idea how depressing it is to write that sentence), these are things I would be doing anyway. So I might as well try to make something productive come out of them. Having written it down now, it sounds like the kind of advice people always give: “follow your dreams, guys! Follow your passions, and you’ll never work a day in your life!” – ugh. But I guess it’s a good place to start, when you don’t have the energy or capacity, as lame as it feels, to do anything else.

So I guess you’ll be getting to know a lot more about me, if you’re interested in the same things, and actually want to continue reading. Thank you for reading so far! Even if I’m just yelling into the void, my only option at the moment is to continue.

xo, Lo

Woops! *Edit: I forgot to add to the list: singing and music – talk about brain fog, I studied this my whole life and almost made it my career (ha! I’d be better off trying to hold onto a high-paced sales job), but when my jaw isn’t playing up, you’ll find me singing along to any and all music

Traveling Japan with EDS

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For such a small country, Japan makes the absolute best use of the tiny space it has. I see now why people keep returning after their first visit – there is just so much to see and do. After a packed two-week itinerary, I feel like I barely even scratched the surface of what there is to experience in Japan.

To tell the truth, the schedule my fiancé made up for us was a little overwhelming in the first few days, but I still wouldn’t trade it for any other way of doing it our first time. The next time we go though, I’ll definitely tweak some things to make allowances.

Here’s what you need to know:

1. No chairs – anywhere!

This was probably the most difficult aspect of Japan for me. I have problems with flat feet, hypermobile joints (especially knees) and back, and it was extremely hard to get used to. Luckily, the different public transport types are quite regular, so if there’s a train or bus that looks too crowded, give it a miss and get on the next one so you can give yourself a small rest. Failing that, stop at coffee shops or parks if you can, depending on the weather, as even many restaurants are standing area only in busy areas.

2. Medication is weak and expensive

Although my legs were in agony after the first day walking around DisneySea (totally worth it though!), I had used up all the painkillers I’d brought in the first couple of days, thinking I’d be able to buy while we were there. Huge mistake. Any painkillers we were able to find were weaker than a normal Panadol, and about $8 for a pack of 10 tablets O_O. Poor BB caught a nasty flu just before we left too, and nothing helped the whole time.

3. Onsen, onsen, onsen!

If you don’t have tattoos, go to a public onsen (yes, they do require you to be nude), which should be relatively cheap. If you’re like me however, and desperately want to experience it anyway (which turned out to be very necessary), book into a Ryokan with a private onsen in your room. Not only do you get the most comfortable bed you’ll ever sleep in, but you also get homemade Kaiseki dinner and breakfast. The mineral springs used for bathing have to be magical, I refuse to believe otherwise. After DisneySea, where my usual walking went from about 3,000 steps per day to 29,000, I recovered probably about 88%. This is in 4° Celsius snow, by the way, with Raynaud’s being a factor, after I had run out of painkillers. In every hotel we went to, they even had a bath in each room and provided free bath salts!

4. Combini & Vending Machines

You’re going to need a place to get rid of all your change, and vending machines are the best place. I’m obsessed with Coca-Cola’s Karada Meguri Cha Turmeric & Mint tea you can get most places, and there are heaps of other types of teas. I wish we had such a cheap and accessible selection in Australia! There are Oolongs, Green teas, Coffees (although the ones I tried were not great), as well as things like Pocari Sweat…don’t be put off by the name, I’m guessing it’s just a marker for a drink for when you’re exercising = sweat, because it’s like 100Plus if you’re familiar – a mild isotonic drink – and is helpful for replenishing salts for your aching muscles.

Combini…I’m actually in love. You could get all your meals here, your skincare, makeup, beauty collagen drinks – even some clothes! The best food I had in Japan was Combini onigiri, and I still think about them. It’s just so easy and cheap, and super fresh, unlike going to a crappy convenience store here, with old, suspicious pies in a heater. We frequently stocked up the night before with some dinner on the way back to our hotel rooms, and to make it easier to get going in the morning.  Also – the ‘Cell Roller’ in the slideshow was actually a cellulite roller, but it is SO good to roll out knots in muscles and loosen Ilio-tibial band from all the walking! I kept it in my bag and used it every time I got a chance to sit lol.

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5. Uniqlo Heattech & Heat Packs (for Winter)

Apart from my dumb decision not to bring much clothes, I didn’t have any adequate winter clothes, living on the Gold Coast. Uniqlo has surprisingly warm, not-bulky jackets and heat-trapping technology in their clothes, so I bought a down jacket that doesn’t make me look even chubbier than I am (yes!!!), and I wore it every day – albeit on top of 4-5 other layers of my thin summer wear. However, I really wouldn’t have survived without Daiso and Combini heat packs. Just open one up and stick it in your gloves, your pocket, there are ones that stick onto your clothes, and even ones to slip into your shoes. They last for 8 hours, and are my number one takeaway. I would not have been able to feel, let alone move my fingers if it weren’t for these things, and at about $1 for 6 or so, extremely worth it!

Uniqlo jacket, $2 Supre hat & $2 Daiso gloves. Good times.

Happy traveling!