Guys, I’m a little fucking frazzled. Malcolm just caught me mid frazz and laughed so much and said he had to take a picture to show me what I look like from an outsider’s perspective.
I look fucking hilarious. So dramatic. So done with today.
I’m well aware that my life looks pretty damn glamorous on social media for a person who doesn’t have a job and has a chronic illness.
I always get worried that I portray the wrong image because chronically ill people have to be miserable otherwise they aren’t reeealllly chronically ill, duh????
But here’s the me you don’t see. Swollen mouth and lips from braces being tightened, red flushed face from being forced awake all day, miserable af because I’m thaaat tired that noises penetrate my inner soul and almost bring me to tears, headache, naked because too exhausted to put on clothes. The list is endless. So yeh, don’t worry sweaty, I’m strugglin’ too.
I love social media! It’s such a great place to upload the best fucking pictures but I get so paranoid that people lowkey think “wtf all she ever says is that she has chronic fatigue but all I see is her uploading pictures of her out so wtf does she even sleep at all? Doesn’t chronic fatigue mean sleeping and being miserable??”
And you know what? I don’t blame them for thinking that. Because that’s the exact attitude or thinking that I had before I got sick. Sick meant you were dying, you couldn’t live a normal life, you deserved pity, your life was over.
But now? I’m sorry, I refuse to give up hope and throw away every inch of normality I can keep. I’d rather be fucking exhausted and crying at the end of the day after spending a day out pretending I’m normal than receive pity and sleep all day (even though recovery generally means resting). Obviously I’m super fucking lucky I am not sooooo bad right now that I have enough energy to leave the house and face the world. At times, for months, I haven’t even had that luxury. I’m going to grab it while I have it and not take it for granted.
I always maintain to myself that I want to shatter the idea that chronically ill means chronically miserable. I actually adore my life. It’s taken a lot of acceptance to get to a point where I’m not crying over everything that I’ve lost from this illness but fuck, I have a lot of shit to be grateful for. I always like to remain positive as I cannot picture how bleak my life would be if I succumb to the idea that this illness was forever and was effectively the end of normalcy as I know it. Nah, fuck that. I’m going to do everything in my power to have the quality of life I deserve and ever-so-slowly recover to a degree where I am happy with the progress I’ve made.
I’ve lost a full-time job, my memory, a fuck tonne of money, financial stability, my thin af weight, my swole gym bod, a law degree has been made useless because I can never work in order to use it, friends who don’t understand etcetc
But I’ve gained such an intimate knowledge of my body, my positivity, endurance, gratitude, slow living idealogies, so many amazing friends, a MALCOLM who doesn’t give a fuck that I am how I am, endless time to spend with Bindi, time to self-care and make sure my anxiety isn’t killing me, creativity, new ways to make money that don’t drain my soul and energy, ever-helpful family, EVERYTHING.
I’ve gained the world. I actually feel like the universe is on my side at all times. Before this all happened, I felt like I was drowning and life was happening to me. I now live my life with intention – you have to when you’re chronically ill. You don’t even know it but because living is SO HARD, you have to think about everything before you do it. I really think about who I want to use energy on, activities that are worth my time, food that is worthy of nourishing my body. Everything becomes about quality. I’ve gained quality. And I lost time for the bullshit. Anything that doesn’t serve me positively has long gone.
I refuse to live apologetically. I am chronically ill but I’m also chronically grateful to be alive in a developed country. I’m grateful to live in a BEAUTIFUL city with the friendliest people. I’m grateful my family live a few streets away. I’m grateful that Malcolm exists (okay, you all know how great and hilarious he is). I’m grateful that I get to wake up every morning and drink tea and talk to my binches in our group chat. The smallest things have become the greatest.
I used to live my life defining it by grand moments. How great my grades were, how prestigious my degree was, what a rich suburb I lived in, holidays/expensive dining out/gigs etc. I’ve had to start again with my outlook and it’s been amazing for me. Now all I have are the small things and you know what? Small things happen a million times a day. That’s a million little things to be happy about. Big things? They happen infrequently and don’t turn out to make you as happy as you thought they would/the happiness is fleeting. The worst day of my life was the day my law degree piece of paper arrived in the mail despite my thinking for four entire years that it would be the greatest moment of my life. I cried in sadness instead of happiness. But today????? I danced really stupidly in the car with my sisters and had a conversation with a store attendant about how zero-waste some bali cafe’s are we’ve both been to and THAT LIT MY SOUL. And that’s how like three small great amazing wonderful things that happened to me today (I always cuddled sausage dogs and got paid to do it).
This struggle is worth it. Every single day I get to enjoy something small and wholesome is a day worth this illness tbh. Because after all… it was the catalyst for my mind-shift. Cheers CFS, luv ya xoxo