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Mackenzie ⭐️
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Friday, May 17, 2024
I was about to start typing but I just realized I think I’ve written my past entries as 2023 rather than 2024 so give me a moment… ok I have returned and they are fine apparently I’m just being silly!
Anyways!!! Not my normal posting day, I know, but I want to talk about ✨chronic illness/pain✨ today because I have some words!
I am 21, and yet I have had constant body pain since I was about 10 or 11 years old. I am just realized as I type this that I’ve been dealing with this horseshit for ten fucking years, most of which without help!!! Wonderful!!!!!!!
My doctor of the past, was an awful awful doctor. When I first came to him as a tiny 10-11 year old child about having pain in my back and legs and hands, he told me “you’re just fat and lazy, you need to work out more. You’re too young to know what pain feels like”. When I came to him a couple years later, the pain more than doubled, he said “your depression is making you think you’re in physical pain, and you’re still fat. Just go for a walk once in a while and you’ll be fine and your depression will be cured”. I never talked about pain with him again because it was the same old answer - I was fat and lazy.
Fast forward a couple more years, I’m about 18 I’d say, and that fuckass doctor retires and I get a new doctor. Within months of seeing that doctor I decide to mention the pain, and instantly I am met with more care and compassion and understanding than I ever was before. I got scheduled for x rays and blood work and this, was the beginning of many many tests of all sorts to come.
Now I’m 21, and I have chronic pain and illness, one of which is identified as fibromyalgia, one of which is thought to be ehlors danlos syndrome, and who knows what else there is hiding in me. I’m a shit show of issues with little to no results from testing, which feels awful given my wonderful past experience!! I mean, I literally got gaslit that nothing is wrong with me for years and now I have someone who will listen and I feel like I have to fight to be heard because nothing shows up on these tests, when really in all honesty I know my doctor believes me. I just am so scared that he will one day go “Welp! Nothing seems to be here so everything is alright and you’re just not in pain! It’s all in your head!!!”, I know it won’t happen but I worry nonetheless.
I’ve been on a few medications, none of which have helped in any way whatsoever, and my pain is just getting worse and worse and is deteriorating my body. My bones creak, I can feel every muscle move, and it ALL hurts, head to toe. Some pain is electric, some is just a general ache, it all sucks. I can hardly get out of bed, and I have a whole set of stairs to walk down to go to the bathroom (which, by the way, I have an inconstancy problem and for those who don’t know that basically means I pee myself every day!), I use a walker to get around when I’m out and honestly should be using a cane in the house, it’s a lot and I’m just barely scratching the surface. I mean, I am literally waiting for my doctors office to open back up on Tuesday so I can call about my disability covering a fucking wheelchair!!
I’m pretty sure I have a disc out of place or a pinched nerve now too, which if I remember correctly means I get to have another mri (I hate mris). I have so much pain that is just suddenly coming on in the last few months AND even better I am in a flare up right now that’s lasting for fucking ever!!! I mean I have to use a bunch of my money to buy a pair of orthopaedic shoes now because regular shoes cause me so so so much pain!! This shit sucks man!
I’ve completely forgotten what I was gonna close this off with originally, but I just want to say that if you struggle with chronic illness/pain I see you and completely understand. I would kill to have my pain taken away, I genuinely wish I would break a bone so I could focus on that over this, anything has got to be better. And having problems mentally already does not help as my mental health has been down the drain lately, so thinking about my pain and what it’s taken from me sucks so bad. But I know I’ll get through it, probably with like 20 years off my life but still, eventually hopefully things will get better or at least tolerable. Thank you for reading this awfully long rant about pain and wish me luck in getting a wheelchair covered by my disability (more specifically getting a wheelchair that will fit in my tiny car to be covered)
Song of the week is The Moon Will Sing by The Crane Wives, I love this song so much ehehehheheheh
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Sunday, May 12th, 2024
I’ve had a hectic week. For starters, I ended up moving my room around a bit which was very handy, so now I have the clean half and the messy half. I also got some new clutter for Bilbo Baggins, my crested gecko, so his enclosure got a completely new layout and refresh so that I could put his new stuff in! He has been enjoying it so far which is so nice!
(Here he is doing a wicked pose)
I did quite a bit of grocery shopping which has been handy, got to get to the food bank finally, and I have been browsing online for clothes so that I can start getting some basics for my new wardrobe. For reference, I have gotten rid of most of my clothes and will be replacing basically everything that is left. I have worn very uncomfortable things for my whole life and have 0 comfy clothes, so I’m making my own (sewing) and buying some basics and eventually will build upon that! I will be hopping over to a few stores when my disability comes in and getting some dopamine dressing - bright colourful - autism friendly clothing!! Speaking of making clothes, I am currently sewing a patchwork bug dress!!! It’s all hand sewn right now as I ✨still✨ don’t have sewing needles for my machine but thankfully it should hold pretty well due to how I’m sewing it, I hope.
I’ve been using my rollator / walker a lot lately and it has helped me pain wise so much, also with energy saving! If I need to sit down, I have a seat! If I need to lean, it has brakes!! It’s so nice to use and I’m glad I’m finally making myself use it every time I’m out now cuz it is so much more helpful for me. I’m still in insane amounts of pain but this at least helps hold it back a little and give me a break with my daily energy drainage.
I believe that’s all for now as I’m half asleep and gotta finish this dress since I’m so close, so by for now!
Song of the week is Smile by Lily Allen, it’s in my self regulation playlist ngl
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Sunday, May 5th, 2024
I made a cat hat today! My sewing machine is in need of needles so for now it’s a hand sewn hat but eventually I will be re sewing it with my machine. I need to figure out a way to put wires in the ears or something so that they stand up properly as when it’s on my head they kind of just fall back and out of view. It’s also WAY longer than intended so I have to fold it up quite a bit to get it to look proper. I’ll hopefully fix these things when I machine sew it.
I’ve been listing to the Petz Catz Nintendo DS game song called Meow Meow Lullaby a lot. When I was a kid, my cat special interest was at an all time high, and when I figured out you could play this song in the game on repeat, that’s exactly what I did, for hours, for years. It calmed me down so amazingly well. I would stay up for hours at night just to listen to the song over and over again in all honesty! For a long portion of my life, probably from about grade 5 or 6 up until I was 20 (for reference I’m 21 as I write this) I was very ashamed of how I was about cats, I pushed back on it hard. I didn’t know I was autistic and the way I was treated by others because of it became too much so I just avoided cat stuff like the plague, I made sure to only like cats the “normal” amount. It wasn’t until very recently through lots of therapy and working on healing my autistic self that I was able to open those feelings back up and accept my “crazy cat lady” sona. I’ve been slowly working on collecting cat themed things like books and figures and things for my walls, and it has been so healing for me. So, I started playing the song again. At first it was only a couple times, and then I put it in my self regulation playlist, and now it’s gotten to the point where I have a playlist called MY EMERGENCY SONG where the only song in it is Meow Meow Lullaby and I use that playlist as an easy was to play it on repeat for hours! The other day I had an extremely stressful car ride all day and hand to be around people all day and I just was not doing good so for a solid 6+ hours I listened to that song and that song only! I’m putting my votes in early and predicting that it will, at the very least, be in my top 5 songs on Spotify by time wrapped comes by.
Anyways, that’s all I have for you for now, as it is 12:58am and I need to sleep, and to be honest I haven’t even taken my night pills yet so hell knows when I’ll fall asleep even after this. Goodnight everyone <3
Song of the week is, of course, Meow Meow Lullaby by Nada Surf!
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HELLO AND WELCOME!
This is my side blog where I specifically journal my life, specifically as a neurodivergent person! I am autistic, and I have a desperate need for somewhere to share my thoughts and such, but writing without others to see has always bothered me, so I will write here instead! I’m nonbinary (they/them) and queer. I will generally keep things that are more likely to be triggering to someone tagged with a tw, but sometimes I may forget so just be warned in advance! I have a special interest in cats, foxes, bugs and music along with some other things that come back sometimes, for example a major past one of mine was Skyrim but I don’t fixate on it much anymore, but when I do it is VERY much a full blown thing. I can’t really thing of what else to put here so I’ll leave it at that! @autistickittie is my main account btw!
The tag for my journaling is “ The Autistic Cats Journal “
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