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

My Mobile First Aid Kit for Chronic Pain/Illness

Preparation is key when you are heading out for the day!

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The past couple of years have been big for me in terms of health. I finally received my formal diagnosis of Ehlers-Danlos Syndrome Type 3 (Hypermobility type, or H-EDS), and not long after, I got corrective knee surgery, something I’d waited on (and sometimes had to ignore), for the previous five years. Lately, I’ve been reflecting on these major events, but also on the small things that make daily life more ‘normal’.

Due to my increasing understanding of EDS these past few years, I have mixed emotions. I feel relief that I am making changes to prevent and maybe reverse any further injury or deterioration, but I also have concerns, and fear of what lies ahead. I can’t help but feel sad and angry that there are so many things I wish I’d known, or should have done even a couple, let alone five or 10 years ago.

Nevertheless, most of the time I do try to stay positive, and one of the things that has made a difference is something small, but that has significant impact. I pack a day kit of a few small items I can take with me, to help me through days when I am out, which take a bigger toll on my energy, and sometimes cause pain due to the extra exertion.

Some days, I don’t need it at all, but the nature of the illness is such that you will never know what will happen; maybe I turn a corner and dislocate my knee, or I pull my chair in at a restaurant and dislocate my thumb (both of which have happened), among many other things. If someone were to ask me a couple of years ago what I packed for a day out, I’d just tell them: a couple tablets of Panadeine, water, wallet and makeup.

Note: I’m in Australia, so this article mentions products found here, but I’ve tried to keep them general, in that you can find alternatives. Obviously everyone has different needs, but this is what I’ve found to be most helpful, especially as steps that complement each other, or ‘building a ladder’, as Martina Stawski of Simon & Martina (a Youtuber couple I’ve been binging – imagine my surprise when I found a video talking about her H-EDS!) put it. This article isn’t meant to be prescriptive, but more as a guide for you to make your own kit that suits you. I’m also modifying it myself and experimenting with bits and pieces depending on my needs, day to day, but this is my core group:

  • Daiso Cellulite Roller (AUD$2.80) – This works amazingly as a mobile ITB roller/massager. Mine gets extremely tight and pulls my kneecap to the outer side = more likely to sublux or dislocate, so when I do more activity than usual, I NEED to use this. I have quite a bit of trouble standing and walking, but for some reason cycling and gym work is much easier-I’m grateful just to be able to do activity and exercise in general, though. For something so simple and cheap, it’s a must-buy!

  • Lockeroom Pocket Physio Triangle (AUD$15) – You can get this from any physiotherapist, and it basically acts as a pressure point you can use, eg for tight Temporomandibular Joint or for deep-tissue pain in shoulders/neck
  • Magnesium Spray (AUD$20) – this may sting and itch sensitive skin, but it can help muscle aches. I was sceptical at first, but I do find if I’ve been lacking magnesium I get muscle cramps and spasms, so this is a good way to get it into the affected spot quickly
  • Futuro For Her Wrist Guard (AUD$30) – especially if you do a lot of computer work or your hands get stiff, this helps give some support to wrists and hands. I take the metal part out so I can sleep with it if I need to.
  • Oval 8 Finger Splints (~$8 each) – not gonna lie, these can be a bit uncomfortable at first with delicate skin, but I never realised until I wore them just how much I hyper-extended my fingers. You won’t be able to use these if you need to write (unless you can get away with writing like you’re 4 years old), but typing is fine. I’ve lost a few of these, so I suggest keeping them in a little bag/box when not in use!
  • Strapping/KT tape (large) with small scissors – For sprains and dislocations, having that extra support is essential – you can find tutorials on Youtube if you’re ever stuck with how best to use it. Buy the large tape, and if you need to use it for fingers or smaller joints, just cut the tape lengthways/half as required.
  • Brita Sports Filter Water Bottle (AUD$15) – there’s hard water in the taps where I live, so it’s nice to be able to fill up wherever. If I don’t drink at least 2L of water a day, I don’t feel very well, so this is extremely important. I’ve found it is the most sturdy filter bottle widely available in Australia, and I always look out for 30% off sale specials for the filters.
  • Deep Heat Cream (AUD$5) – first of all; if there was a perfume of Deep Heat, I’d be the number one customer in the world, second; this can help even just by distracting from acute pain with the coldy-hot sensation (via Methyl Salicylate – be careful if you have a sensitivity – I do, but for some reason, I find using this fine), and the smell (for me) is super comforting and refreshing
  • Omron TENS Unit (AUD$50) – Again, something at first I was sceptical of, but when I tried it, it can help with pain management. Unless you need to place it in an awkward area, these are nice and discreet, and you can adjust the intensity and type of pulse stimulation. TENS units are really expensive in Australia for some reason, but thankfully I was able to get a really nice unit from Amazon US for a fraction of the price. Lately, Aldi has a sale where their TENS machines are only ~$30!
  • Crystallised Ginger (AUD$4pk) – I get really nauseous due to certain foods, or if I don’t eat regularly enough, or if I am being driven somewhere, so having a tin of ginger on hand that I can chew has saved me from needing to go home early many times

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  • Couple blister packs of over-the-counter medication each (Mersyndol, Paracetamol, Panadeine Extra, Telfast, Sudafed). Ibuprofen (Neurofen) or Aspirin is not on the list as it causes a lot of issues to gut lining. The pain killers in the list generally don’t take away much pain, and only usually last for an hour or so, but are sometimes preferable than taking anything stronger or nothing at all. I’ve included antihistamines such as Telfast or decongestant (Sudafed), as I get awful sinus and migraines due to allergies/sensitivities that would mean my day was a write-off without. Best advice: follow the directions of each medication, such as taking them with food or not to mix them with certain other drugs.

I keep all of these in a clear case I can easily slot into my Anello backpack that is extremely handy, light and easy to carry.

Hope this post has been helpful!

Love,

Lo xx