Shingles, Puppies & More

Hello everyone. I started writing this post last week, but to say things got in the way would be an understatement. My fiancé is dealing with the remnants of shingles, which has meant the loss of his arm, as it’s too painful to use it (where the outbreak mainly occurred). So, I’ve been picking up the slack, in as much as possible. In fact, the small amount I have been able to do; cook, wash dishes and laundry, drive, has been too much, apparently, and my body is crashing. Hard.

I went to my wonder physio and she confirmed that the crunch that had started under my knee was tendinopathy from all the physical stress of moving to an apartment up four flights of stairs without any movers. She asked how my back was, seeming to expect my reply telling her that it was cramping up all the time like crazy, and to make matters short, it’s due to my hips, which I can testify feel like they’re sliding all over the place when I attempt to walk down stairs (because walk wouldn’t really be the word…more like wobble from side to side and skip-drop down each step while holding onto the wall for dear life). Anyway, as always, it’s a domino effect and my hands and wrists are pinging like crazy, from the seizing up in my shoulders I suppose, and lack of muscle strength all over.

In the case of EDS, hypermobile at least, it turns out that muscles atrophy much faster than the normal person. For example, if I don’t do my exercises every single day, and at the very least, every other day, it’s almost as if my muscles melt, whereas it would usually take several weeks for other people. This is particularly true for me in my inner quads. They’re weak to begin with, as the outer quads ‘take over’ and pull my kneecaps to the side of their too-shallow sockets, hence all my knee problems and dislocations.

So, all of this has led to a pretty crummy outlook for me, at the moment. I know I’ll be back up and annoying Boh soon, but when I’m so exhausted and in pain that I can barely get a word out, it feels like the future doesn’t look so bright. I’ve had to say goodbye to my hour-long (low intensity) stationary bike rides, which I quite enjoy, and goodbye to any physio, apart from 5 mini squats, twice a day, which is endlessly frustrating, because I felt that things were finally starting to seem doable. That I was without so much pain, according to the physio though, was dangerous, as what I would consider discomfort is considerable pain for most people, but since I’ve had such a long and difficult recovery from surgery, I’ve gotten used to daily pain. Now that it’s lessening, it’s easy to overdo it with exercise or physical activity in general like walking or cleaning, because I’ve basically forgotten what it’s like not to feel pain for every movement. Hence the tendinopathy.

Anyway, I thought I should update and get it all out here. I haven’t been sleeping very well and have started having my long vivid dreams again, where I’m conscious and don’t feel fully asleep the whole night, so I’m very tired and honestly, probably a bit snappy at the moment. I also have to sort out food, since it’s still touch and go on what affects me and how, especially now I can’t exercise. So there’s a lot to think about constantly, and manage. But! Have computer, will write, albeit through a fog of fatigue and crabbiness.

If you’re still reading through my update of complaints, I appreciate it. Really, thank you, dear reader. I will try to finish some other posts that are actually of substance as soon as I can.

Reward(?) for reading my crabcakes. My pup turned 2 the other day! Here he is looking like that awkward seal meme in his $2 birthday top hat, only posing because I was holding puppy icecream

As ever,

Love Lo xo

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