luigilore

[luigilore]

hi everyone <3 ive missed u guys... i really would like to continue posting but i haven't had time irl to write so idk what to even really contribute :') but popping in to say hi and thank u for all ur kind messages, it really means a lot

[luigilore]

hi anon who sent me a message recently, ik u asked me not to post ur ask but it is important to me that i respond to you ❤️

ur message made me cry bc i am so sorry you have to go through that; i cannot imagine the sense of betrayal, injustice, and the sheer physical pain you have had to endure. but also the sheer indifference of the healthcare system; the bills, lack of communication or real care, feeling like you are your only true advocate, and the constant invalidation and minimization... i resonated with so much of what you said about the cyclic nature of chronic pain and the reality of living with your pain and condition- and often feeling like it itself is leading your life entirely.

i totally get what you mean about people in your life being so supportive but never truly being able to understand... because you feel so inherently othered by your physical limitations and pain. i also do not know another person in their 20s who has the condition i have or has had back surgery. and i faced some really weird ableist comments from a fucking professor in may so i felt incredibly invalidated and felt like such a burden. i literally had to leave work early yesterday and call in sick today bc of my back so! it's hard not to feel like your sense of self becomes your pain and condition. i feel so pathetic when i can't even do normal things like sit down or stand in place for too long.

i very much get that feeling of your life becoming like a series of decisions, i often feel like i'm bartering with my own body for more time, for more anything; for something more than laying in bed all day.

i feel alone a lot too. and i feel annoying complaining to other people. then i think others think if i am not actively voicing my pain then i am okay, which is also not true. it's just really hard to be a person when you're in constant pain. when i have really bad pain flare ups, i don't really feel like a person... you're so consumed by the pain and instinct to just get any sort of relief

anyway, i truly, sincerely hope that things get better for you; that you're able to find some sort of relief and management. you mentioned using my inbox as a diary and my response to you is also a diary entry too haha <3 but you're right, it is so cathartic to express these frustrations. your message really resonated with me when i saw it and i wanted to let you know i am here for you if you ever want to send another ask (or dm!) pls pls feel free <3 sending so much love - mandy

[luigilore]

I totally hear you :/ I have chronic pain in my hips (I sent you an ask about it a bit ago) and there are some people who I just don’t think have a general understanding of long term pain management and all the effects that come with it. It definitely gets under my skin. I kinda try to use it as an opportunity to teach people about invisible illnesses/pain and how complex they can be, as well as how it varies from person to person. It’s especially difficult mentally for seemingly healthy young people. I understand if it’s not a great environment for you right now and I wish you healing and happiness! Hope to see you in these parts again soon :)

yeah i definitely agree that people seriously lack an understanding of chronic pain and disability

[luigilore]

omg the ways a lot of people talk about his back/chronic pain/disability are actually fucking bizarre to me

[luigilore]

Wait, are you leaving? If so I’m going to really sad, please take care! You are one of the best writers in this community❤️!

i think so but i don’t think im going to deactivate. i just don’t enjoy posting like i used to and it’s uncomfortable being on here when im having bad pain flair ups

[luigilore]

i miss u sm u were truly the backbone of this community

aw babe <3 i miss u guys too

[luigilore]

ik u probably won’t see this but love u queen! take care of yourself <3

ily thank uuu🩷🩷 im feeling better now 🤗

[luigilore]

love you so much queen <333

🥺ily thank u it means a lot rn

[luigilore]

We need more kind people like you in the community :) I hope you don’t go anywhere and I hope you’re feeling better! Best wishes love

thank you this is sweet :) i dont think its good for me to be on here anymore or at least right now but i had a lot of fun here <3

[luigilore]

Sending you love and healing ❤️

ily <33

[luigilore]

Sending you so much love 💗

thank u <3

[luigilore]

Feel better Mandy 🥺

thank you :)

[luigilore]

hi!! missed you!!

🩷🩷

[luigilore]

hi babe i’ve missed you

<33 :’)

[luigilore]

love you mandy, thinking of you xx

i love you😊

[luigilore]

sending you love and healing 🩷

:) thank u babe

[luigilore]

Take care love 💘 all my well wishes are with you 🫂

thank you 🩷