As the title of this post says I HAVE AN ANNOUNCEMENT! It is
official, I have started a YouTube channel! I am so excited about this and
cannot wait to see where this will lead me!
The channel will be similar to this blog. My goal is to
educate people about disabilities. As well as, (hopefully) give a voice and
hope to the disabled community. Growing up disabled is an extremely lonely
thing. I knew no one else with a disability, and I couldn’t find anyone
anywhere. It led me to believe the lies that everyone told me. The ones that
said I couldn’t do anything. The ones that insisted I have no future. The
screams that say disabled people are burdens and a waste of breath.
After a while of hearing this, you begin to believe it. I’m
hoping through this channel I can show both abled and disabled that someone
with a disability has a purpose and a future. We aren’t destined to never leave
the house and not reach our dreams. But that we are just the same as everyone
else and are capable!
It would have similar notes to this blog, but the content
will be different. As much as I love blogging there is a difficulty to it.
That, of course, is that it’s not visual or audible. You can’t hear my pain or
see the difficulty of walking. You have to try and “see” everything through words.
As much as I love words and their power, writing is not always the most optimal
way to get something across.
Having said that, I am continuing with the blog and I’m
hoping the two will weave together! I will be posting to my YouTube on Sundays,
so please follow me on this journey. I’m really nervous and still trying to
work out how to do it all. But I truly appreciate the support!
Today I am going to talk about something that I haven’t brought up publicly before. The story of how my got turned completely upside down in less than a week. I won’t lie to you, I’m nervous but I also think it’s necessary.
Just over a year ago, I ate a banana and fainted face forward onto my kitchen tiles. A few days later, I drank some orange juice and felt like I was going to faint again. This time I didn’t. Instead, I started shaking, nearly vomiting, and being dizzy as heck. That was the beginning of a long night of me getting sicker and sicker. After that night, it happened every time I ate for weeks,
But, let’s go back, for a second. Before this, I could eat almost anything bar meat. I was fine with that; I love being a vegetarian. But absolutely everything else was fine to eat. It was something I took for granted, and also something I greatly miss.
So, how did I get from being able to eat a stack of pancakes, to not being able to even stomach a mouthful? It all happened over four days.
I had an ear infection, I wouldn’t normally go to the doctor for this, but on this occasion I did. It was a week before I was due to fly from Australia to England; I knew an ear infection with 25 hours of flying would never end well. So, I went and got antibiotics. It worked well. I had my flight, my eardrums stayed intact, and I was with my overseas family for the first time in eight years. Except by that point, I hadn’t eaten a real meal since the fateful orange juice night, three days before the flight. Up until the plane ride, all I pretty much ate was toast. On the plane, I picked at the food and ate the fruit. I had no appetite, and my stomach was on edge the entire time.
When I was in England, my body seemed to recover. I ate normally and I only had one or two “attacks.” It was as if my body or God knew what was coming and gave me a break to enjoy food and my holiday as much as possible. I was still careful with what I ate, and my appetite was low. But I kept food down. Whilst I was there, I felt exhausted, weak and nauseous all the time. In the first week, or so and my aunt (who’s a nurse) worked out I needed to eat every two hours to not feel as if I was going to faint. In the meantime, I couldn’t stop drinking water. If I didn’t have a sip every ten minutes, I would feel so dehydrated, I could barely talk.
By the time I got back to Australia, I had a sort of grip on everything. I was eating every two hours and had grown back some appetite. But I was losing weight rapidly. I dropped an entire dress size. By the end of four weeks, I had lost nearly ten kilograms.
By now, we were all thinking I must have diabetes. A lot of people in my family had it so we knew the signs. A week after we got back from the UK, I saw my doctor, who did a whole bunch of tests to reveal one disorder:
I have a hypersensitive sympathetic nervous system.
In fact, my doctor said that diabetes would have been a better diagnosis. Unfortunately, no one knows how I got this illness. It’s a rare, and unknown sickness. However, we think it was a reaction to the antibiotics.
Now, all I can eat are food with a low glycemic index. That means food that doesn’t raise your blood sugar fast. Also known as, no sugar, almost no carbs, and for me specifically, no coffee. As an ex coffee addict, this was the worst part for me. Ultimately, my eating habits are and a whole lot of blandness. On top of this, my hormones were completely mixed up. I cried almost every day at anything. I couldn’t my anger or any of my emotions and I quickly fell into a depression. I didn’t want to go outside, I couldn’t eat in most places (and still can’t), I had to give up my favourite outings that I used to frequent almost every week. Nobody understood what was happening and most of my friends didn’t believe it. They would try and get me to eat things I couldn’t and told me to just eat it anyway. When I didn’t, they got annoyed at me and often refused to go out with me if they wanted to eat.
I was so overwhelmed and felt as if I was a huge burden to everyone around me. I couldn’t afford to buy the food I needed to eat, so my parents had to help when they couldn’t either. I felt as if a huge part of my life had been ripped apart. I didn’t enjoy eating anymore. I didn’t like having to eat constantly and having no appetite. I hated that everything and everyone made me cry, and I was anxious to ever do anything or eat anything new and I was so angry the whole time. As time went on, I started to become terrified of getting sick in any other way. My mind ran rampant with how to stay clean and healthy, in a cycle, over and over without giving me a break. It felt as if I was doomed to live in a permanent state of fear and in and out of panic. I started living my life doing everything I can to avoid illnesses. Wash my hands religiously, I avoided anything with potential side effects.
Now, a year later, I am still struggling. Slowly, I have increased how often I can eat, and I’ve been able to manage my emotions and hormones, but I still struggle. At this point, I eat because I have to not because I enjoy it. I still often feel like a burden to those around me, constricting where we can go eat. I am still often afraid. Scared to eat, scared to try new things. I am still struggling to control my mind and to not worry about sickness. I still avoid, I still wash my hands and a myriad of other things. But I’m also working to get better.
I often feel as I have no control over myself and life. Like everything I do can be pointless, and I’m doomed to be a slave to my mind and body. But here’s the thing…that isn’t true. I may not be fixed, I may never get better, but there is always hope. There is a reason for all of this and a way out of my crazy mind. Nothing lasts forever, not even despair. There is joy, and always a bright side.
For me, that bright side is that I am eating healthy. That I am giving my body what it deserves and treating it with care and kindness. For the first time ever, I listen to what my body needs and respect that with care and love. I have learnt how to be grateful for the little things and how much my body truly loves me. How it is amazing what my body can put up with and function. It loves me so much and was designed so magnificently. This whole experience has taught me to love myself and my body in a way I don’t think I would have gotten to if it weren’t for this. That is a beautiful, wonderful and exciting thing that I am grateful for. I’m even more grateful for this than I am about the fact I could once eat anything.
If you only take one thing from all of this, let it be this: you are precious, there is hope, you will get through this even when it seems pointless. Your body loves you, there is a reason for that! Love yourself too.
As always be kind to one another. especially YOURSELF!
I am honoured to announce that I have been nominated for the Sunshine Blogging Award. I feel so blessed that this has happened! I never started this blog for praise, but to educate people on disabilities, and help people along the way. Thanks to you who read these pieces, I know I am doing what I can to end stigmas and discrimination to my community. Saying all of that, it does feel nice to know that I am helping people. So, thank you to my readers. You are all so amazing!
Thank you to Jordyn from The Chronically Unimaginable for putting me up for this award. Your blog is amazing, and I feel so shocked that you would put me in the same category as you! Thank you! (Seriously, guys go check her out). As a part of this award, I get to answer some questions, so let’s go for it! The Rules: • Thank the blogger who nominated you and provide a link to their site. • List the Sunshine Blogger Award rules and display their logo on your site. • Answer the SBA questions given by the person who nominated you. • Nominate 11 other bloggers and ask them 11 new questions. • Notify the nominees about their nominations.
What made you decide to blog about your certain category? A few reasons, really. Part of it started years before. I was going to the beach with my friend and we couldn’t find a park. All of the disabled spots were full and most didn’t have a badge. My friend turned to me and said that before she met me, she had no idea how annoying it was when non-disabled people parked our spots. It was then that I truly began to grasp how unaware most people are when it comes to disabilities. I realised I could either scream and yell, or educate. All I knew was that I had to do something. This sparked my novel that I have been writing — and will hopefully publish one day soon! As much as I love that book, I feel like it didn’t tackle everything that I should. I mean you can’t put every disabled issue in a novel! So, I decided that it was time. On top of that, this blog has been very cathartic and helped me to process everything!
Would you ever have a snake as a pet? Hah, no, but I would totally have a water dragon!
Jurassic Park or Star Wars? Sorry, I have never seen either!
If you could have one extinct animal come back, what would it be and why? I’m going to go with a T-rex! I just think that they’re super fun. Although, they may eat me so perhaps not?
What is an odd pet peeve of yours? People who use my favourite pens! You can use any of my hundred others, but not these, please!
What is the weirdest food combination that you enjoy? People seem to think it’s weird I like peanut butter and maple syrup on my toast
Do you blog as a hobby or as a profession? Hobby, although it would be so cool to turn it into a profession!
Would you rather be able to swim underwater without having to breathe or explore space without needing a space suit? Space – I hate water!
What is your favourite thing about your blog? The people who read it, and comment their own thoughts. It always expands my mind! Plus, I love, love, love meeting new people
Would you ever go on the show ‘Naked and Afraid’? Never. Ever. Nope. I cannot.
Middle of the day or middle of the night? Middle of the day!
One of the most common questions I get asked is, “What is it
that I can do to end ableism?” For those who are new, according to Google,
ableism as, defined and “discrimination in favour for able-bodied people.” What
a lot of able people don’t realise is that these kinds of acts are extremely
common in everyday life. As a disabled person, not a day goes by where I don’t
see it or hear about it from people all over the world. This can be anything
from hurtful comments such as, “You’re an abomination.” To physical harm and
crimes made against us. Such as bags being stolen, or mobility aids being
Ultimately, a lot of ableist remarks are made out of
ignorance. For example, many strangers try to compliment me by telling me,
“You’re so brave, I would kill myself if I were you.” Or people trying to help
me get around by grabbing my chair without permission. All of this is wrong,
hurtful and often terrifying. But I know many abled people just don’t know what
to do, and how to avoid being ableist.
Before I continue, I need to make sure that you know that I
am not excusing those who make ableist remarks and harm. That will never be
okay. However, I am merely trying to end this trend one person at a time by
showing respect and love. By explaining some ways how to be with disabled
people and not be discriminating.
I might be wrong, but from what I can gather abled people
struggle to not be ableist because it’s what they have been taught from birth.
Society insists on it and it is everywhere. Once you’re aware of it, the whole
magnitude of ableism is so overwhelming. How can one person make a difference
at this point? Is there really any point in trying? Believe me, I ask myself
that question on a daily basis.
But luckily, I am here to share some thoughts on how you can
help. Everything I am about to say is all my opinion, but I truly believe will
make the world a better place!
Here are five things you can do to help disabled people live
an equal life to everyone else and not spread this ableism.
1. Listen to us and believe what we have to say!
When it comes to this topic, I really struggle to get others
to understand me. I will tell one of my many stories where ableism was at play
and instantly people won’t believe me. Here’s the thing, just because you don’t
necessarily see something happen that doesn’t mean it doesn’t happen. It’s like
me claiming that cows don’t actually produce milk because I have never seen it.
Our stories are real, painful, and important.
2. Learn from what we have been through!
When we tell you about things that people have done, learn
from the hurt we have experienced. Try to avoid following the footsteps of
those who do ableist actions. Learning is always a part of life, so don’t panic
if you screw up. Just try! If you slip up in the meantime, that’s okay! Give
yourself grace, knowing that you’re trying so hard, and you are making a
difference! I am so grateful!
3. Don’t ask us “what happened?” straight away.
When people meet us and ask about how we became disabled
right away, it feels horrible. Ultimately, we are more than our disability. On
top of that, you don’t have an instant right to my story, just because we’re in
the same room. And I don’t deserve to be put on the spot like that. It’s not
like I would go up to you and ask what your biggest trauma is. I would never
expect you to tell me your dark secrets before you even tell me your name. No
one should expect us to do the same.
4. Ask questions.
Okay, you can only do this one when you know us well enough.
But when I become friends with someone and they ask me questions about how to
do better, it means that they really care. I feel valued and I love to answer
5. Spend time with us.
Treat us the same as you would anyone else. Hang out with
us, go to the movies, to cafes, to whatever it is that you enjoy. You will
quickly learn that we are great and more than just people with disabilities who
are fighting ableism. We are people with thoughts and interests. The more you
are with us and value us, the more you’ll see ableism. It’s then you learn how
to help end ableism in yourself.
There you go, five of the many ways to help the disabled
community. Ways to end ableism and to raise our equality. To those who wanted
to know, thank you! To those who are going to take, this on board THANK YOU!
The fact that you acknowledge ableism is half the battle and you’re doing
amazing! We are so grateful!
Remember this as you go forward, everyone has been ableist
before (including me). It’s okay that you have made mistakes, I promise.
If you have any questions, ask away me in the comments! I
won’t take it personally, and I will do my best to answer them!
If you enjoyed this, please like and subscribe.
As always, be kind to yourself and those around you!
Today I thought I would share with you six things that I find mind-blowing about abled people. Seriously, as someone who has never been an abled person, I find myself saying, “wow, you can do that?” about 100 times a day.
So, in no particular order, let’s go!
1. Fine motor control
Okay, here’s the thing, my fine motor control is terrible. Like I have to get someone to tie my shoelaces on a bad day. I never cut up my own vegetables or anything like that either. Cause you know, sharp knife + tremor = cut off finger. So, whenever I see someone chopping really fast or having really neat handwriting, I AM AMAZED. Like I cannot comprehend this ability. I try and work out how they do it, and my brain goes blank. I mean literally blank. All I can end up picturing is fuzzy whiteness in my head. On the plus side, a part of my physiotherapy is to play video games to teach my brain muscle memory. Heck yes playing Mario every day till I die!
2. Spontaneity…what’s that?
There is no way someone can call me up and say, “be ready in ten, we’re going out.” I have to work out if I have the energy. If my legs even want to move. I have to find out how long we’ll be out so that I can pack enough food and meds that mean I won’t faint. I have to make sure wherever we’re going has wheelchair access. I need to make sure that my tires are pumped up enough and that I have dinner made because I know I’ll be too tired to cook by the time I’m back home. For the life of me, I cannot imagine what it’s like to just go out with ten minutes notice. It’s amazing, and something I can get jealous of sometimes.
3. Going out alone…and not having any panic
Obviously, this one isn’t to every abled person, but it is the case for a lot. Every single time I go out and I’m alone I get very anxious. If I’m out long enough that may subside depending on where I am but it’s horrible. There have been too many times where I’m alone and someone I barely know asks me “what happened?” Or tell me that, I’m an abomination or a burden. Or that, “I would kill themselves if I were in your position.” Too many times I’ve heard the stories of people stealing our bags, grabbing our mobility aids, abusing us in way possible. Too many times I have felt it all happen to me and it hurts my heart so deeply. The idea that not everyone has that burning their mind when they’re out or getting an Uber is fascinating to me!
4. You can work 38 or more hours a week…and then still hang out with friends?
I get fatigued going out for more than three hours. If I did that more than two days in a row I would need to be in bed for the rest of the week. The idea that you guys can just work 9-5 and then go out to dinner and do stuff on the weekend blows my mind! Statistically speaking I use 200% more muscle power and energy than the average abled person. Also, my body is fighting my chronic pain while I sleep so my sleep is the equivalent of half of an abled person. So, if I sleep eight hours it’s the equivalent of an abled person sleeping four. Hence why I have NO idea what it is to have energy. I am both so confused and impressed!
I am a huge ballet fan. Like I would go to any ballet any time. In November I’m am seeing the freaking Nutcracker in the Sydney Opera House and I am so excited. I’ve literally had that as a dream since I was five so tiny, little me is ecstatic. Anyway, every time I go to one, someone does a pirouette, or a backflip and I just don’t understand how you balance. The other day I was watching Disney on Ice and during their version of Frozen, one of the backup skaters did a quadruple spin and her legs looked knotted together briefly, but she could still balance. WHAT? HOW? Please, someone, explain
6. How far you can actually walk.
I totally get that you can walk and all that. What I don’t understand is how you lot just go for a casual five-kilometre run. That just seems so overwhelming to me. How are your legs just not collapsed on the floor, like noodles? How are you even alive? How come you can go on with your day? How do human bodies even work?
Well, there you have it. Six things that amaze me about abled people. There’s so many more that I’m missing, though, feel free to let me know of other ones!
The other day I was nominated by UndercoverSuperhero to hop on the trend of doing a vogue parody by answering 73 questions about me. Thanks, Ami, I’m so excited! Let’s go!
1) What is your usual Starbucks order?
I don’t personally like Starbucks – at least not in Australia. However, at coffee shops, I tend to order peppermint, chai, or lemon and ginger tea.
2) What does your work station look like right now
It’s extremely neat, I just finished cleaning. (I’m obsessed with everything being organised)
3) All-time favourite food?
This is so hard! I love all food. However, I have allergies so I can only eat low glycaemic food which means almost no sugar or carbs. Also, I’m a vegetarian. So…I’m going to go with nachos or Dahl curry.
4) Favourite Author?
John Green, 100%
5) What do you think of open relationships?
Honestly, they are not for me, but it’s up to each person what they want.
6) What is your favourite video game?
Rachet and Clank – Specifically the PS2 versions
7) Guilty Pleasure treat?
Right now, I’m obsessed with Lindt dark chocolate with hazelnut or Carmen’s orange bliss balls. Seriously, do yourself a favour and try them!
8) Favourite Movie?
This is too hard – although I did watch Toy Story 4 this week which was amazing!
9) Favourite book?
The Book Thief by Markus Zusak
10) Twitter or Instagram?
I love Insta but I do not do enough for photos, so I guess Twitter?
11) Desktop or laptop?
12) Best advice you’ve ever received?
Either, love above all else and everything will fall into place. Or, ultimately no matter what you do in life you will never fail as long as you learn from it. Learning and growing as a person is one of the best things you can do.
13) What project are you working on right now?
My (hopefully) debut novel!
14) Favourite colour?
15) Did you get good grades at school?
Nope, I graduated by 2%. Although, I worked really hard in university and redeemed myself
16) Dream job?
Um, novelist, podcaster, YouTuber? Basically, anything creative that I can also live off. Novelist first and foremost though! However, I don’t believe that our dream job necessarily has to be one thing, it can be multiple facets of us! Humans are way too complicated to be summed up by one thing!
17) Played any sports?
Does binge-watching shows count?
18) Do you have a degree?
Yup, a Bachelor of Psychological Science, and I’m about to start a Bachelor of Arts Majoring in Creative Writing.
British and Australian
20) What is your favourite kind of blog post to do?
Anything happy, or eye-opening. Basically, anything I’m passionate about.
21) What do you like to collect?
Stationery and stories
22) Describe yourself in three words?
Resilient, sassy, loving
23) If you were a rapper what would your rapper name be?
I’m going to be
honest with you guys. As I type this, I am really freaking annoyed and angry. I
have been in bed for the last two and a half days. I was supposed to get up
today and exercise but instead, I kept sleeping because I could barely move.
For the last week and a half, I have been trying to write a very simple column
for a girl I know and yet I can’t focus for more than five minutes on it. I
don’t even remember the last time I was able to read more than a page without
falling asleep. I have no idea how I’m focusing enough to write this. I think
my entire energy is just fuelled off anger and a dash of glitter. Either way,
here I am writing it.
To be honest, I think this side of having a disability is
rarely talked about. People mostly like to speak on what we have achieved or
how “inspirational” we are. Never our pitfalls It’s a tough one because a lot
of people think that we as a community can’t do anything. When they learn we
can do pretty much anything it’s like we can never have a bad day (or week).
I’ve lost count of the number of times people close to me have accused me of
faking my bad days. Like all of a sudden, my symptoms no longer occur just
because I can hold a conversation and work hard.
All of that, of course, is why activism is still so needed.
I get that there are 100s of causes to fight for nowadays. I know that many
believe that we don’t need that many let alone another one. Heck, I have many
people in my life who think that all this activism has already worked. They
truly believe that we are all equal and these “extra” movements are unnecessary
and pathetic. But the thing is, if I was working an average 9-5 job, I would
have run out of sick days a long time ago; and probably have lost the job. I
know that most people wouldn’t believe me when I have days off. The truth is,
very few believe me now. Even more than that, this fictional 9-5 job is just
that, fictional. Most disabled people have to create their own jobs because
people won’t hire us. People see the wheelchair, the hearing aid, the guide dog
and we’re automatically put in the “incapable” pile.
People need to start listening to us, they need to see us.
The truth is, this community is amazing. We’re resourceful, passionate,
intelligent, optimistic and sure-as-hell capable. But very few know this, very
few see us, and that isn’t okay.
We are human, we are valuable, and we deserve to not be
ignored, or treated as a second-class citizens. We deserve to be listened to
and not be accused of “faking” or “exaggerating” all because someone doesn’t
I realise that this post has been an entire rant and I
apologise. I promise next week will be more fun!