#spoonie streamer

[chronicallykiki]

FUNDRAISER EVENT Guide Dogs 250 Challenge

From 24th April to 16th May, I'll be taking part in a fundraising campaign for Guide Dogs!

"Every day 250 people in the UK are told they’re losing their sight. It can be devastating. People with a vision impairment are more likely to encounter depression, loneliness, and unemployment. Guide Dogs helps people with sight loss live the life they choose, but we need vital funds to do this. That’s why we need you to be a game changer and take on the 250 Challenge." - Guide Dogs Website

During this time, my Challenge is for streams to be at least 250 minutes long. I also plan to donate an extra £1 for every sub to my channel. And! I've set up a few goals, with incentives to look forward to:

Level 1 Goal £250 : If we hit this, I will sponsor one of the puppies! Level 2 Goal £500 : If we double our 250 goal, I will sponsor two of the puppies!! Level 3 Goal £750 : If we manage to triple our 250 goal, I will sponsor all three puppies!!!

Links: My Twitch Channel My Fundraiser Page Guide Dogs Website 250 Challenge Sponsoring A Puppy

Streaming for 250 minutes (just over 4 hours) doesn't sound like a challenge for most, but for a spoonie like me, who can't regulate their energy levels, it sure can be!

I'll do my best, but in the event I'm unable to meet the 250 minute minimum, we'll have to think of a fun forfeit or something (be gentle).

Regarding the sponsor puppies, the first will be chosen at random, and the second will be via a poll on my fundraiser page.

[the-autistic-system]

i am unfortunately too full of whimsy to take my own falls seriously

[hellakiddie]

Small communities feel right!

I love genuine support kindness and friendship

I don’t want fame I want community and financial stability!

[evanoxvt]

Having chronic health is a full time job, and is often disabling.

Let's start with the most basic of concepts. A full time job is 8 hours a day, 5 days a week. AKA 40 hours. Chronic health SYMPTOMS are usually 6-7 days a week (because once in a blue moon we get ONE EXCEPTIONALLY GOOD DAY), and are often EVERY WAKING MOMENT, and possibly every sleeping moment too. Sometimes we get a few hour break from our symptoms, but they are generally 24/7.

That in an of itself is far more than a full time job. And we don't get paid for it.

Then you have all the doctor appointments. These take long periods of time, and cost you money. That's a triple negative on your time sheet, you got energy spent on health symptoms, the doctor appointment, AND loosing money you aren't able to make.

So now where do we add in the time for all the little life necessities? It often takes disabled folks much more physical energy and more time to do things like shower or brush teeth because we can get injured and/or fatigued from things like this which normal people do not. Cooking is another time consuming and energy draining task. The amount of time I loose from spending 5 mins cooking instant ramen makes it really not worth it. There's a reason many of us go without food for long periods of time if we do not have a support person doing basic life things for us or with us to ease the burden.

NOW imagine how much MORE energy it takes to do chores, like washing your dishes or laundry. I'm not even talking general cleaning, just the bare necessities here.

Somewhere in there you need the energy to ACTUALLY EAT the food you or someone else made.

If you haven't caught on to the massive amount of energy it takes for us to do these things yet, you probably need to go learn about it elsewhere because I'd like to get to the next portion of this.

We often face medical gaslighting from doctors, and general gaslighting from the rest of the world, especially people who know us well or absolute strangers. People who know you a LITTLE BIT are the most likely to not gaslight you in my experience.

This means for every SINGLE doctor appointment, we have to PROVE there is an issue before we even get to see the doctor.

My most current personal example is meeting my new PCP (of whom I will likely be changing AGAIN due to his fear of dogs and inadequate care related to my service dog being in the room with me). He did a basic physical, looked at my recent labs and test results, and then told me "You are healthy, I cannot find anything wrong with you." That is not acceptable as I was there after having ANOTHER doctor say the same shit when I am getting dizzy constantly, having clear cut tachycardia issues, and having signs of BP issues (debatable on the issues itself). These things, in addition to my medical history AND life-long experiences indicate I very likely have POTS.

POTS is Postural Orthostatic Tachycardia Syndrome. This is a autonomic dysfunction condition (falls under dysautonomia). I'm really not the best at explaining this condition, but common symptoms are: Dizziness, I believe both Orthostatic intolerance and orthostatic hypotension, obviously tachycardia (but I've heard you can have bradycardia as well, unsure on that one). POTS is considered a syndrome because it is a conglomeration or group of symptoms and cannot be diagnosed by a single type of test.

I have heard of several tests that can make it much easier to get diagnoses, but even then you may struggle to get diagnosed.

I personally have done an ECG/EKG, as well as a 24hr holter monitor (basically 24hr EKG), and a huge amount of blood tests. At home, I have done a number of tests (specific and random) of both my blood pressure AND my heartrate. This is how I found out that I have abnormal BP and HR.

There was an issue with the day I got the 24hr test done, as I became ill (from doing laundry) and had to lay down for the MAJORITY of the 24 hours. As a result they did not see the tachycardia in the way we needed it to be seen (aka I wasn't standing up enough to get the results to prove the tachycardia).

I have literal videos and pictures PROVING that I have tachycardia and what we believe to be orthostatic intolerance (but could be hypotension....we highly doubt that though). The doctors ignore it because I DID IT. They however will not do the STRICT testing required to prove it. They also won't refer me to the departments required to test these issues.

I was literally sent home with some "homework" by the nurse to get current vitals all weekend long and email them in to prove the issue and request a referral to the blood pressure clinic. Today I spent 40 mins doing this so far. It will actually take longer later today when I do it again because I need to start with laying down for an hour.

Generally you spend 20 mins to do this 'test', but I have to do the version that is comparable to a tilt table test, as my doctors have refused time and time again to give me the test to prove if I have or have not been passing out. Yep, you read that correctly. It turns out I very likely have been passing out for very brief amounts of time but have no way to confirm without tests LIKE a tilt table test.

I'm not the best at working quotes in so take a look at it then I will discuss more.

"Results showed that standing after being supine for 1 hour was at least as good as 10-minute tilt; longer tilts introduced excessive numbers of false positives. Standing HR and BP measurements were taken at 1, 3, 5, and 10 minutes. Thus, standing tests for POTS requires previous supine rest. In our hands, >20 minutes is needed to reach fluid equilibrium."

Reference:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3639459/

This means the original test I was told to do (which took 20 mins) is not as accurate as this one. In the one I've done, which has MORE THAN PROVEN the issue, you lay down for 10 minutes, not 1 hour, take your laying BP, stand and immediately take your BP, wait 2 mins, take BP, wait 3 more mins, take BP, and wait the last 5 minutes to take your BP. Aside from the laying down BP these are done AT minutes 1, 3, 5, and 10 OF STANDING. Overall this is a 20 minute test. While trying to use it in place of a tilt table test you need to add an hour instead of 10 minutes, so it comes out to be 70 mins total.

Now take this morning for example:

I was already laying down for far over an hour since I was awake but not getting up yet (technically I got up a few hours prior to use the restroom and take care of the dog, but I immediately laid back down and multiple hours passes). I took my BP, then did the 10 mins of standing and took those BP's, then did the same thing but while laying for another 10 mins, and finally changed HOW I WAS LAYING to my usual laying position and did 2 in that position, 1 after initially moving and the other after 10 minutes.

So for A SINGLE one of these I spent 40 minutes, and later will have to ADD an hour onto that, JUST SO I CAN PROVE the thing the doctors are ignoring.

Now tell me how spending several hours A DAY on doing 'homework' for your doctor ON TOP OF EVERYTHING ELSE is somehow not A FULL TIME JOB??? If you really thing it isn't you need to get off your high horse. Because this is real and a serious problem.

Disabled folks, like myself, are constantly being told we aren't doing enough or that we need to just try harder, or that we aren't worth it because we don't work, etc. BUT these people saying this cannot even begin to fathom what we go through on a daily basis or how much energy it would take them to simply do our 'homework' for the doctors. Literally, tell me you have a full time job that lets you take nearly 2 hour breaks on a frequent basis to check you BP or to test your heartrate, or to let you lay down and decompress (physically or mentally) or that lets you take frequent breaks for HOWEVER LONG YOU NEED, or that lets you call out sick FREQUENTLY, with anywhere from a decent notice to absolutely no notice, or even having to leave work early because you overestimated your capacity for the day.

Jobs like that DO NOT EXIST. They don't. There are small companies that may allow that, but that would be the one-off exception, and is certainly not easy to find. Jobs like streaming give you the flexibility for all of these accommodations and more, but does not provide you with medical, dental, or even a steady stable income.

So please for the love of all things good in this world, stop treating disabled people like we don't do enough. We shouldn't have to earn the right to EXISTING. We shouldn't have to PROVE that there is an issue to the people expected (and paid) to help us. We shouldn't have to beg for help because the rest of the world has turned their backs on us.

It's ridiculous. Absolutely ridiculous. Be kind. Be understanding. Lend your ear if you cannot do anything else. We work harder than you will hopefully ever have to know.

Thank you all so much for reading this far into my post!!! I don't really feel comfortable with promoting myself but I will use the mental excuse that its almost my birthday so "just do it already FFS".

There are a few ways you can support me, both with and without paying a single cent!

My first link is going to be my throne, where you can safely buy me gifts that are delivered directly to my door! You can get me most kinds of things, and I do sometimes update it to contain alot of fun stuff (especially around holidays). I can received several very helpful health related gifts, and love that my community has shown a desire for my health to be improved in any way possible. This is very heartwarming and really makes me feel seen, heard, and appreciated. You can find anything from streaming stuff, health stuff, dog stuff, and fun stuff on my throne so feel free to browse. I also have some payout items that go to my throne balance for me to spend on whatever I want in case you can't make up your mind.

The second link is my carrd link, which contains a bit more information about me, as well as EVERY POSSIBLE LINK you could want to find to support me. This is where the free support comes in. If you follow me on my socials, youtube, or twitch you will be able to interact with me. As we all know, the world of social media and content creation requires people to interact with you and your content. I will be posting to youtube again soon, but as of right now my most active places are discord (where you can get health updates, live notifications, and just chat and chill with me), twitch (where I stream), and Twitter/X (where I am currently most familiar with posting things).

I appreciate alot of the little things and am unfortunately not the best at expressing it....but I try, and that is kind of the most important part. Again, thank you for reading this far, it really means alot to me.

[nerdapraxia]

Hey. just share I learn other day is have disability pride month. Is month all about celebrating people have disability’s. get understanding some people struggle daily and do sample things like feed yourself, go dress yourself . My case communicate to others people daily. Be hard ask things for I need.

All colors mean

Red: physical disabilities ( I fit in this )

Gold: cognitive and intellectual disabilities

White: nonvisible and undiagnosed disabilities

Blue: psychiatric disabilities

Green: sensory disabilities ( I fit in this )

[imnerdhaveapraxia]

Hey everyone. Is disability pride month

I tell you what each color means

Red: physical disabilities ( I fit in this )

Gold: cognitive and intellectual disabilities

White: nonvisible and undiagnosed disabilities

Blue: psychiatric disabilities

Green: sensory disabilities ( I fit in this )

[chronicallykiki]

Hi, I'm Kiki, and I'm bad at intros (and outros too actually)!

Let's see... I'm a Brit who sucks at being British (I don't like tea, crumpets, or The Royal Family). ¯\_(ツ)_/¯

I'm a spoonie! Which basically means I suffer from chronic illnesses. I won't list 'em all here, but I'm always open to talk about them when people are curious.

I'm primarily a Final Fantasy XIV streamer, but I also throw in games like Party Animals, Sonic Mania, The Sims 4, Capybara Spa, Puyo Puyo Tetris, Super Animal Royale, PlateUp!, and Teenage Mutant Ninja Turtles: Shredder's Revenge, when I can. Oh, and I lose at fighting games like Tekken and Street Fighter... and there's a bunch of rhythm games I still need to start (I miss Guitar Hero and Rock Band so much).

PS: In this house, we love squapes!! 🍇

📣 let's have a classic vtuber networking thread! 🤝

to participate, just REBLOG ♻️ this post with your PNG and a little bit about you 👋 - let's see how long we can make the chain!

[chronicallykiki]

✅ QUEST COMPLETE ✅ 🦮 Guide Dogs 250 Challenge 🦮

You guys are AMAZING!! We hit our £750 goal, and as I pledged to sponsor all three puppies-in-training, that means that, together, we've raised...

£1080

I just can't thank you all enough for all your love, support, and encouragement, during this event. It's been a blast, and I'm still completely blownover by the fact we reach even £250, let alone the £750!!

When I say "you guys are amazing", I mean it with every fiber of my being!! 💖 I hope you all understand how very loved and important you are.

Sponsorship money has already been sent, and I'm awaiting the welcome packs. In the meantime, please enjoy all their cutness in the video above.

You'll notice the sponsor puppies themselves have changed, and I did ask Guide Dogs about this (see Discord screenshot below). The jist of it is that new sponsors are introducted in January, May, and September. I had no idea, and I'm so sorry to anyone disappointed that I've been unable to sponsor Hazel, Frank, and Walter specifically.

However, please don't be too disheartened, as all the money raised through the sponsorships benefits the cause, regardless of selected pup. And lets face it, every single pup is adorable and well worth a sponsor. 😉

[thergbvision]

Made something for TOME but I thought I’d post it here too, so have a little about me and the book genres I’m currently consuming like candy.

[astrakittyfromspace]

An inglorious return

So I promised myself no more tumblr after the purge, but it's still the least worst social media with a decent sized user base, and I want to one day try out the Twitch streaming thing, which means I will need a place to post schedule updates. The real reason I'm here right now and not putting it off until I do start streaming, is so I can commission artists for however much longer I'm financially stable. I desperately want to move out of my parents', but there's several practical reasons it keeps getting put off, so until then, I wanna do some good with whatever ability I have to support some charities and creatives, and this will make that a bit easier, probably.

[chronicallykiki]

I'm so glad this is happening again!! Thank you so much @aniraklova!! My sims had an absolute blast last year, and I've been feeling the itch to play the game again lately, so this is perfect timing!

I'll be placing and editing the lot on stream later. I can't wait to see what little details we can add to this already amazing lot. Maybe I'll put a band together this year too?

As this save game is based on OCs in Final Fantasy XIV, maybe the bands could be made-up of NPCs? *rusty brain cogs turning*

E D G E W A V E

The simblr special summer music fest comes back again. Gather your bands and performers. We will rock this summer together once again!

RAGE - ROCK - REPEAT

HERE WE GO AGAIN! I promised the fest next, already this year, I did it. Y'all rocked this last year and y'all will do it again, having no doubts. This time we're going to desert and have wasteland vibes. Cuz why not? Hell yeah let's go! General info:

The fest takes place in a special lot I’ve built and included in this post once again.

I heard you and this time we're rocking for a whole June!

Special fake crowds are included in download with lot.

Don’t be shy to use your own deco sims and other stuff on lot!

And I encourage you to redecorate the stage for your performances!

Again encouraging you to make an annoucement for your performances! The EDGEWAVE logo included.

When you post tag me and use the #edgewavefest #edgewavefest2024 tag

If you have any questions please ask.

THE RAVAGERS will perform again this year, of course they can't miss this.

PLEASE REMEMBER TO HAVE FUN!

Also no google forms this time

DOWNLOAD

You should place lot here in Oasis Springs! Don't forget about the bb.moveobjects on

[virgoooooo]

Looking for a queer-friendly gaming Discord server? Look no further!

Queercade (16+) is a community-led gaming Discord server for LGBTQIA+ folks to come together and make friends, chat about daily life, and play games!

We feature:

experienced moderators

verification systems to avoid trolls and homophobia/transphobia

channels for popular games like Minecraft, Pokemon, and more

channels for spoonies, neurodivergent folks, and venting channels

regular movie and game nights for everyone to participate in

channels for streamers, small business owners, and other content creators to network and share their work

and tons more!

Join here!

[imnerdhaveapraxia]

Hey everyone. I want to talk about other topic in gaming space is twitch vs kick and give my opinion on. First why I think I can talk about is because watch closely any of gaming and i did see this before.

Kick will fall down on they own face because owned by a of gambling company, + doing shady things in background giving me red flags.

anyone remember mixer right. Mixer and Kick put in so much money it platform cause down fall of mixer. like have 95/5 split revenue, getting high profile streamers. Kick saying pay streamers 16h for how big or small channel, but I think it don’t apply to everyone.

Kick allows things like sex things should not on platform. Kick doing same stuff as mixer did. Kick will gone like mixer. Please leave your opinions in comments or if I live on twitch and please come for talk about it

Please check out my twitch because I try to hard work to talk on stream with my speech disability

[deusexmachinawitch]

★. Welcome to my Universe

Satella ✦ 25+ ✦ Cancer ☼ ✦ Europe ✦ She/They ✦ Bisexual ✦ INTJ ✦ Asian European ✦ Neurodivergent ✦ Spoonie

Likes: Anime & Anime ✦ Videogames ✦ Self-care ✦ Anything purple or pink ✦ Animals ✦ Books ✦ Chocolate ✦ Spirituality content ✦ Esoterism ✦ Digital Art ✦ Aromatherapy ✦ Gardening ✦ Anything that smells like lavender, vanilla or both combined

Dislikes: Coffee ✦ Tobacco ✦ Cockroaches ✦ Mess/Germs ✦ Rude people who claim they sarcastic ✦ Closed minded people ✦ Limiting beliefs or people who push their limiting beliefs on others ✦ Victim mentality ✦ Abusers ✦ Pranksters (Not everyone has your "humor") ✦ Entitlement ✦ People who undermine others

This is my personal blog to share my journey with manifestation, law of assumption and witchcraft.

I mostly reblog to not lose good resources but I'll be sharing my LoAss path with you all.

I really hope I can give back to this wonderful community someday.

Asks ☆ Open

DMs ☆ Open

• Please tag your trigger warnings.

• Do NOT trauma dump.

• I don't mind giving advice about LoAss but I'm not a therapist.

• Do not harass.

• Everyone's LoA journey and techniques are different, please respect everyone's views as long they are not hateful or harmful.

Main Techniques:

Scripting, Revision, Affirmations, SATS, Lullaby Method, Alter Ego effect, Subliminals, Breathwork with Visualization, Mental Diet.

Currently trying to manifest:

• SP (Reconciliation, Living Together, Commitment to Marriage)

• Successful career (Artist, Youtuber, Streamer, Expanding my current career to be highly respected and getting my way with things)

• Rich Mother and her getting remarried to the man of her dreams

• Home of my dreams

• Healthy pets

• Desired appearance (Weight loss, thin legs, v-shaped face, glass skin, firm bust and non-noticeable eye bags)

• Being spoiled (skin and beauty products, new clothes, any electronic device I want, merchandise, etc)

• Privileged Life (Princess treatment, Nepobaby, etc...)

• Better Health.

• Desired skills (Speak the languages I want like a native, ballet dancing, telepathy, etc).

• Magical Notebook that Manifests everything that is written in it

My Rules/Affirmations:

WIP

Friends/Blogs I enjoy:

@starbursts777 ✦ @midnightbish ✦ @blushydior ✦ @fleurlx ✦ @lotusmi ✦ @nonbinarydeity ✦ @qinraijin ✦ @charmedreincarnation ✦ @miracledarling ✦ @pearlygrace ✦ @iamthat-iam ✦ @magic-irl ✦ @angeltearsxoxo

My Law of Assumption Posts:

☆ You are a Deus Ex Machina

☆ The Monarch Butterfly

☆ 【何となく, なんくるないさ • nantonaku, nankurunaisa】 - Somehow, You Will Become It

☆ Manifestation and Mental Health

My success stories:

☆ How I revised my abusive mother into becoming a caring mother

☆ Angry roommate calming down and behaving nicely + Manifesting all of my close friends in one place even though they didn't know each other

☆ Desired appearance + Free Trip + Sudden Gifts + Making my SP jealous because I got everyone's attention on me instead of him/me having an extreme glow up during my time off while he looked rough + Invitation to an exclusive gaming party

☆ Manifesting McDonalds chicken nuggets as a manifesting exercise and ending up with 25 McDonalds chicken nuggets out of the blue lol

☆ Ridiculous cheap/free beauty products + perfect notebook for Law of Assumption + Mom buying me a pink tarot deck

☆ Roommates cleaning the whole house because I affirmed I was going to have a chill day while waiting for a game release + Having a full active Splatoon 3 team

☆ Insane luck in an anime gacha game, getting all playable characters' SR cards in just 3 days from the game opening service

☆ My Mom buying me a fancy pink tarot deck and 3 oracle decks our of the blue + My Mom suddenly buying me two other oracle decks randomly while the package with the other card decks are still on the way

☆ A Trip to Paris (Note: Trip currently postponed due to the Paris riots)

☆ Reconciling with my younger brother after 3 years of NC because he disrespected me (he apologized)

☆ A mole on one of my breasts

Results from Challenges:

☆ 3DOLC + ROE + 12 hr Movement Challenge (Birthday Edition 2023) 

Witchcraft skills:

Cartomancy, Spell Work, Kitchen Magic, Crystals, Dream Interpretation, Pendulum.

Tarot Decks:

Dark Forest Pink Vintage Tarot (Soon)

Currently NOT doing readings or other type of spell work.

[jerirose]

Hiii friends! Just a bit of a little self promo post. I know a few of you know I do speed paintings on youtube, but I'll be switching them up a little bit soon! I will soon be changing to longer videos (1min per hour - since that's the way CSP records), but if you don't have the time to watch them (though they are great background noise if you need some) I'm starting to upload Shorts that are under 1min long! I'll also be starting to post to TikTok again and I'd really, really appreciate support on either/both platforms! I'm pretty nerves about trying out some new things 😅