Living Sick: Trying to be Normal with a Chronic Illness

Being ‘sick’ is a really difficult thing to get your head around. I don’t mean when you get sick, I mean living sick. It’s especially difficult when your family is either aggressively disbelieving or completely apathetic. You start to question everything you know about yourself and your life; whether you’ve been too easy on yourself, too weak, a hypochondriac, lazy…the list goes on, and on. I vaguely know one person outside of my family (yes, the same ones who don’t believe in it) who has EDS, and when you’ve spent your entire life trying to cover up and hide what you thought were embarrassing or unseemly traits, it’s difficult to ask for help.

I try to keep away from others in forums and whatnot who have similar situations to mine, for the same reason my family doesn’t want to hear about it: it’s an endless cycle of self-pity, irrational rants most likely due to medication or other issues, and an unwillingness to try overall. But mostly, it’s a community that will not be there when you do try to get better, or you try to get on with your day – then you lose that community. People are trying to make each other and themselves feel better, and there’s nothing wrong with that, but it’s not necessary to create an ‘other-ism’ of anyone who isn’t sick, or is on a different level than you, or is just trying to move on with their lives.

I don’t want to sit around all day complaining about why I have it tough and how the system is keeping me down, and never try. I have goals, dreams, aspirations, and they tower over most people’s, and I don’t think I should have a free ride because my body is essentially faulty – I want it to be the reason I succeed over what I could have potentially become. I’m already out of the ordinary, so I might as well make it in a positive way.

There are so many motivational voices online and in general at the moment, and I tend to agree with them: if you want to do better, you have to be better. You have to get up at 4am. You have to work your buns off. You have to get over your insecurities and your fears and you have to go for it, carpe diem and all that.

But what happens when all of that is your daily reality? The other day was unusual for me; I woke up at 5am and had enough time and energy to do my very light rehab exercises for the first time in three weeks, played with my puppy, uploaded a selfie for once, went to the library to study and ate healthily and cheaply – all before 9am. I felt fantastic. I never thought I’d love being up early! I’m so organised! I’ve done my makeup and styled my freshly washed hair! I can get so many things done today, starting with the three assignments I haven’t really started, due this week.

At 10am, I was done. I’d completely run out of steam one hour into a normal work day for most people, so I took advantage of the buffering-every-30-seconds internet and caught up on Game of Thrones…and then started typing this.

My reality right now is that I’m finishing a Bachelor degree I haven’t been able to do until my mid-twenties, living in my fiance’s parents house unable to move out because we’re not sure if we’ll have to move soon for said-fiance’s work, and we can’t afford it. I have no savings or belongings, apart from my laptop, some clothes and makeup, and I definitely won’t be able to attend one of my oldest and best friend’s wedding this year. My body has started rapidly deteriorating in the past two years, but my health insurance doesn’t want to cover the appointments or aids I need until I get an official diagnosis, which I can’t get for at least another month. I go to a library or uni every day, from morning until night, so that I can try and study outside of the house and be productive. All while trying to stay as healthy as possible, trying to design ways to get out of my current situation and to plan a wedding and family when we can afford it, as well as to try garner at least some financial security for said decisions. I can’t get a job at the moment because I never know when I’ll be able to do anything, and I’m due to have surgery which has a huge recovery time. Who wants to hire someone who goes above and beyond for three weeks, then crashes for two? Who has brain fog and is so clumsy or stiff that they can’t write or type – all at unforeseen times?

I want to have as normal a life as I possibly can – scratch that, I want to have the BEST life. Better than normal, better than most – because I have to. I refuse to live my life as a daily struggle. I don’t want to not be able to pick up my future kids or end up in a wheelchair. I want to climb mountains and swim oceans and cook dinner for my friends and family without having to sit on a chair while I get someone else to cut vegetables, and I don’t want to have to trade off what I can do so that I have the energy to shower some days.

Days are getting more frequent where I feel great for part of the day, and ready to faint, have too much pain or fatigue and have to lie down (but not be able to sleep, that would be too easy) for the rest. Times when things seem hopeless and there’s no way out. I keep telling myself it’ll just be a humbling story to tell my kids one day, because they won’t ever know what it’s like to live like this. But I can’t convince myself. I’ve been waiting for a very long time to be able to look back and feel happy and proud that I’ve crawled out of whatever has happened to me, but there’s no end in sight. I feel exhausted even contemplating what needs to come next to be able to do that one day.

I guess you could say this is one of the bad days, but I’m not even in pain today. I’m just tired. I’m so tired of being ‘on’ all the time in an effort to be normal, and I just can’t really seem to find the wherewithal or the energy to pretend.

10 Games for People Who Suck at Gaming

Growing up, my brother and I constantly fought over the shared gameboy we had (spoiler: he somehow always got 90% to my 10% share) with the 100-loaded fake game cartridges where about three of the games would actually work. I never really got into games until the past few years, because I was convinced I suck at them.
Turns out, I just suck at first-person shooter!

Oh, I still smash my fair share of buttons and am far from some cool *gamer gurl*…mostly because I get so mad BB will periodically tell me that maybe I need to take a break and calm down so that I don’t go on a murderous rampage while I’m cursing and ranting and throwing controllers…but I recently realised I had hit a milestone: I was at level 30 on Horizon: Zero Dawn (albeit on easy mode). Somehow, my hunched over, white-knuckle style of playing has paid off and I can hit moving robot dinosaurs with a bow and arrow that requires several fingers to work different buttons at the same time – and interspersed between expletive-laden explosions, I’m exclaiming how much I love it. So here we go!

1. MarioKart 8 (or any, really) (Nintendo Switch)


You can’t really go wrong here; apart from the friendship-destroying possibilities, it’s all a bit of fun, and it’s made better by being pushed off course by shells and cliff falls. Pretty sure everyone knows this one, but on Nintendo Switch, there’s a whole new way of playing and you can play with people online.

2. Child of Light (PS4)


This beautiful fairytale game is one of my favourites, for its compelling, bittersweet story as well as its art and soundtrack. I actually still listen to it while I’m studying. It’s turn based, so you rely on strategy; picking members of your team and levelling them up with potions, points and gems, and matching them to your enemy’s weakness. It does get a bit repetitive towards the end, but it’s a good introduction, and you can do two-player with someone who doesn’t care if they’re not the main character.

3. Never Alone (PS4)


I found this one similar to Child of Light in some respects, a cute, melancholy tale based on Inuit folklore, with clips to explain the stories. You’re a child who has to navigate the arctic wilderness with a spirit fox who you can switch to or play with another person. You’ll have to run from predators and figure out how to get out of some situations – I don’t mind saying I had to look up several walkthroughs to get to the next stage sometimes – but not difficult in terms of dexterity or gameplay. A bit creepy sometimes, but overall lovely, I just wish it wasn’t so short.

4. Mario + Rabbids: Kingdom Battle (Nintendo Switch)


I’m currently playing this, and it’s much better than I expected: another turn-based one with the familiar Mario characters and quests as well as battles. You can do two-player, but only in the battle arena, unfortunately, which is limited to how far you’ve progressed in the game. Of course, this means there’s potential to re-play these areas after you’ve completed the main quest, so it’s good value. Also, it gets pretty difficult in terms of strategy and enemies, so it’s not so repetitive.

5. Diablo III: Reaper of Souls (PS4/PC)


I played this with BB, and although it did get repetitive and we felt over-powered too soon, with a bit of an anti-climactic end, it was still worth it to get used to playing in general, particularly as a newbie. It’s very simple: just move around killing stuff and collecting loot.

6. Knack (PS4)


This one may be a little childish, but it’s great for two players and can be quite challenging! It’s an interesting concept, somewhat like Transformers. It’s a little hard to describe but it’s like playing as an elemental golem…that sounds pretty weird but I definitely recommend it! Another one that I wish was longer, because I wanted to keep exploring the world and see what else I could do. There’s a sequel out now that I can’t wait to try. Hopefully it lives up to the potential you feel in this one!

7. Zelda: Breath of the Wild (Nintendo Switch)


I loved this game. I’d always wanted to play Zelda as a child and this was the first for me. Beautiful scenery, challenging but rewarding gameplay, a story that you have to put together and use your judgment on how best to complete challenges or even the order you explore places. The game starts out as a tutorial, although not a frustratingly simple one. I’ve recommended it to everyone, and I’m going to play it again, actually. Also, it reminded me a bit of…

8. Dragon Age: Inquisition (PS4)


This was the first proper Playstation game I ever played, and it’s so good. Especially for someone who thinks they can’t play video games. You’re given endless choices in how to react, respond and take action with your player, you can customise the character (spent a good hour or so on this lol) and you can play it again and again through other ‘races’ of characters. The only thing that wears a little on me is that there is so. much. talking. Like, I just want to smash stuff sometimes! I probably agonised a bit too much over the choices to make, but in the end it doesn’t matter because you can always choose differently next time. Cool storyline that sets up for a sequel, and cool enemies that are challenging and satisfying to beat, it can be turn-based in some parts but you can also play with the settings if you just want to focus on slashing and the rest of your team can follow suit or heal or whatnot.

9. Guild Wars 2 (PC)


This was one of the first games I tried playing on my old laptop, before a three year old I was nannying somersaulted into his water and it spilled all over it. It took a bit of getting used to, but it was compelling story details that kept me trying, and I miss playing this, although my keyboard got smashed quite a bit (prior to the water incident). Similar to Dragon Age, but you play online with others in real time.

10. Horizon: Zero Dawn (PS4)


I started playing this while house-sitting and never got to finish it. It’s fantastic! Awesome storyline, amazing graphics, you’re a wild warrior girl in a dystopian world filled with robot animals and dinosaurs where you seek the truth. I don’t want to give too much away, because half the fun is discovering bits and pieces along the way. It’s intense, but you’ll want to sit there for eight hours straight until your eyes start crying and your fingers get stiff. It’s tense, exciting, compelling, and impressive, and basically trains you to become a better gamer. I want to buy a PS4 now just so I can play this again – even if I have to start from scratch.

Games I’m Waiting For:

The Witcher: Wild Hunt – ok, so obviously this is already out, but it’s another one I never got to finish

Skyrim – see above

Zelda: Hyrule Warriors – as above…

Crash Bandicoot – I only have Nintendo Switch right now, ok!?


Super Mario Odyssey