To those of you with sensory issues (I believe this is pretty common, right?) have you noticed them changing as you grow older? Have they gotten easier to handle, harder, or stayed the same? In fact, if you feel like “going there” and sharing - please feel free to even express what they feel like.
No need to share what they are, if you don’t feel like it. Share what you’d like.
Better - but not through age.
Since I got diagnosed late, my before-diagnosis time was a mess and I had no idea why. Since my diagnosis and me subsequently understanding what’s happening I have become less likely to compromise on things that will cause meltdowns.
I also have disabled status so I can request accommodations at work, and lucky enough my team and workplace are lovely about that.
I can’t tell if time made a difference for me, but I feel like I’ve lost patience for people telling me “don’t be like that”, but that’s probably also due to knowing what’s going on now. I keep asking them if they’d tell a quadriplegic to not be like that and just real quick get them something from the high shelf. Surprisingly efficient, although there’s always people claiming you’re just being dramatic. Thankfully they are a minority around me.
I feel this terribly deeply. I wanna send like e-hugs because it’s crazy how bad life can be pre-diagnosis. I can’t say what it’s like on the other side of the fence, but I can say for sure there’s some mental scars that I will probably always hold that won’t swap. And maybe I don’t care if it swaps so much anymore, because I know who I am and I am valid so you know - there’s that.
I’m glad you’re holding your own and not getting harmed (as much more than likely) anymore. Because you deserve happiness, and people are hella quick to take it from people they don’t understand because they don’t believe they deserve anything less than the floor.
I’ve been kicking around the idea of disability for the past year or so. Because I know I can get it, but I also know it’s a long process. I ultimately want to marry my partner if plausible, and I think that’d drive a wedge in the works. There was a point where I was so crippled with pain that I couldn’t really do anything. I am on some new experimental treatment that has helped but there’s still times when my body just shuts down, and this past week was a “kind” lesson in it. If you have the time and the care (as in you do not have to do this) you mind hitting up my inbox and telling me some more about disability x gigs?
Still relatively new to Lemmy and can’t figure out RN how to dm you, but I am not in the US, so most likely we are not in the same country.
I can tell you broad strokes though - I got super lucky with my therapist at that time. Sadly he’s retired now :( I was super exhausted, had gotten out of hospital and then diagnosis and at the same time (since in paper I looked like an easy candidate to find work for) the unemployment agency was hounding me. I told my therapist as an off-comment “I wish I didn’t have to do shit for the rest of the year.”
He said that can be arranged and I thought he was joking - it was October or something. Nope, he stalled and his practice became unreachable. All I could tell the unemployment agency was that I didn’t hear back and I don’t know what’s going on until they got frustrated and backed off. Come new year, everything went back to normal and it went fast-ish. Took maybe a year in total? I think less, maybe roughly 9 months?
I didn’t realize what happened until after the fact, but he bought me the time I needed to process things at that time.
Ah for sure we’re not in the same country, cause my ass is as American as a sloppy grilled cheese sandwich and a crusty can of tomato soup =P! No worries by the by, I think (cause I’ve done it a couple of times) - you just kinda like…click the person’s name and there’s an option somewhere past that. But I am on desktop and I couldn’t even begin to tell you on mobile.
I am so super glad you ran into that therapist. Look, I will shout it from the rooftops that I literally love the crap-crackers outta my therapist. They are a wonderful human being, and they just are so real and so present. Like just so freakin’ cool! It’s always a blessing when you find those people who are just there. Themselves. Real af. Dope! And they vibe with you. I have a teacher I’ve stayed in touch with hundreds of years later, because I think they really made a difference in my life and they are just such a wonderful organic human being. And when I think of stand-up people, they’re at the top of my list. BLAM!
It was kinda shady how he did you, but it sounds like he gave you everything you needed. I’m taking some time off right now. I’ve got a loving supportive partner, and originally I was lined up for a couple of surgeries. But my amaze-a-balls doctor told me about a radical new treatment I could give a go, so instead I am just getting a chance to rest. Which is crazy, because I don’t know if I’ve ever rested in all my days @_@! And it is still weird, but while I am in pain (and yeah, unfortunately I am still in pain) it’s not as much as it was. And I have way more mobility than before and can do way more than I could for a while there. But I am pretty blessed that my partner and I are pretty low-needs and we can make it on one income as long as we’re smart about it.
I was making food yesterday after writing to you, and I did get hit with a case of the sads. Because I thought about it, and when I said I really didn’t think my life would play out like this I really did mean it. And I have been practicing radical acceptance, because I think such things are necessary in situations like this. But I am also really sad because I know I’ve got a lot to give to the world and have lived quite the adventure for someone like myself. But I also figure that organically things tend to slow down the older you get. And to live in the past is to live like a fool. Ultimately dream aspirations are to move back to a super-dense city with my partner, work for some kind of non-profit (but not one full of bullshitters…which can be hard to find), and to be well enough to hold my own. But I am not sure these things will be obtainable the way I see them, and I have also sort of had to come to terms with that as well. Now, I’ve just gotta fudge my way through, cause it’s all I’ve got.
Idk if I we’ll “meet” again (cause it’s a small community but people come and go as they please) but I really hope your life only gets better from here on out. That no matter where you go, you keep getting all the support and assistance you need and keep being the sassy (and probably funny) advocate you are. Cause the more of us that are open about our real life issues and our day-to-day struggles the more people will realize we’re just humans - out here, trying to live - just going through it is all.
Big hugs (sis? Getting strong sis vibes. I wanna sis you =P!) and keep being you =)