Apr 25, 2025
I just want to make it through my best friendâs wedding.
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I just want to make it through my best friendâs wedding.
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Itâs the not knowing when itâll stop. The unpredictability. Wondering âwill this ever get any better?â Itâs the people close to you just accepting that this is how you are now. Itâs the 24/7 nature of it all. Itâs the not having a choice. Itâs the not having a break from it. Itâs the people around you thinking you chose this. As if you enjoy it. As if you actually chose this life. Nobody would ever choose this. Itâs the having to play symptoms down. Itâs having to pretend it isnât as bad as what it is. Itâs having people judge you, even the people closest to you. Itâs having to live with symptoms that most people wouldnât know how to even begin to cope with. Itâs a lack of self confidence and self purpose. Itâs staying hopeful when it doesnât seem like thereâs anything to be hopeful for. Itâs a lot of things.
You might not feel it, but youâre one of the strongest people EVER. You put up an invisible fight daily. You do all that you can. You often survive second to second, minute to minute, hour to hour. You get through the day. You do your best no matter what obstacles are in your way. And itâs important to remember that even on the really bad days that youâre amazing. Youâre strong. Youâre tough. Youâre fabulous. Lots of love xxxxxx
10 January 2023
Dress: DĂEN
Bodice: El Costurero Real
Being able to dress adaptively and in a way that makes me feel happy, aesthetically, is a constant battle as a disabled person. When I'm able to achieve both at the same time, I feel at ease, like I can breathe again. đ¸
Next appointment for chronic illness stuff is tomorrow, pretty stressed about it.
He's very nice so far, but I find most doctors are NOT happy about me being a scientist, and even less happy about how good I've become at tracking symptoms and researching them. But after over 10 years of medical gaslighting like what else was I going to do...
Still pretty sure my second chronic illness is a lupus.
Tomorrow I hope when I tell him that he actually listensđ . Wish me luckđ
big stompy doc martens paired with a wheelchair is a god tier look tbh
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When you finally get the courage to tell someone about your arthritis and this is their response. đ¤Śââď¸
a love letter to the chronically ill
I know itâs hard. Itâs hard to watch your friends and family experience life as you were meant to. Itâs hard to have to give up your passions because your body can no longer handle them. Itâs hard to mourn a future you never had the opportunity to live. Itâs hard to not be able to trust the one thing youâre stuck with, your own body. We are told to âlook for the goodâ or âfind the positivesâ. I hate to say it but there are very few. Instead I look for the beauty. I look for the beauty in new device stickers with butterflies in them, in colourful fluffy socks for the handles of my crutches. I look for beauty in the quiet drips of transfusions and the gentle hum of life around the hospital. I look for beauty on the lanyards of my nurses and the laughter of others on my ward. The lives we live can suck, we arenât dying but we arenât given the chance to live. But, beauty exists all around us, if only we give ourselves a moment to truly look for it.
love,
a fellow spoonie who is very proud of you <3