Slow Living Weekend: My Diagnosis Story
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- Опубликовано: 16 июл 2024
- A bit more than normal pain today, so I’m doing that slow living life everyone is talking about. Since I’m not doing much today, I thought I would share how I got my autism, lupus, and other diagnoses. I also get to sample some gluten free donuts that my wife made 😬. As always, thank you for being a part of my journey, love you guys.
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Late diagnosed autistic/adhd person here and I feel you. People think because you're well educated and can speak to people, you should be fine. xxx
Facts, I can hide my issues so I don’t bother you with my problems, but that doesn’t mean I am okay. I’m just good at hiding it.
@@Eryykcmasking...we're doing it our whole lives. Sigh
Wesley is gorgeous. It seems like you have a wonderful family. Thank you for sharing all of this. Many years ago, when I was in my late teens/early 20s, I worked in group homes for people with various disabilities. There was one person who I grew very close to. He was autistic but not at all high functioning. He couldn't acquire language. He had a lot of issues. He was also my favorite client to work with. I would go to visit him on my days off so we could go for a car ride and get ice cream. Years later, when I decided to go to college, initially I wanted to work in special education. I didn't pursue it because, omg, the theories and practices were just.....no. None of them treated the people who dealt with these issues as fully dimensional human beings worthy of respect and honor. Instead, I studied sociology and now I teach it. I say all of this because there is just so much that is not well understood. I learned more about autism and other neuro differences from reading Oliver Sacks than I did from the textbooks for my classes.
Valid, I have read some books/ strategies for helping autistic children and most of it is about making life easier for the neurotypical community than for the autistic person. We need more autistic voices in those spaces, I want to help change this.
@@Eryykc You seem to be a very calm and collected person. Now that a whole lot of that turbulence you had to handle is out of the way and you finally have a diagnosis. We both have a grasp of 'knowing is half the battle,' but the problem is finding the right people, at the right time, to figure out what's wrong. 😵💫
Just curious. Have you ever been to college yet? If you have, did you ever finish? If you decided college isn't right for you, what were your reasons? I've had friends that went to college, finished and others that barely made it through a year of college decide it wasn't for them. I'm approaching 40yrs old.
I've seen a lot of inspiration from a variety of people who finished a degree in their 70's, to the Autistic British guy, who has Autism, unable to read for years, and I think, speak even, just have a neurological breakthrough in the past 10yrs. It's like he was absorbing information, but couldn't output that info. It's like a mental dam, sort to speak, finally broke, and he could articulate and everything.
Everything he observed, and his teacher taught and worked with him on, finally burst through and came to fruition. He was able to finally read and write around high school or thereafter. Graduated and was able to go to college and is one of the youngest professors at some British University.
I think with all the various ways to cater to the student, schedules don't have to be so rigid and set in stone anymore, say like 30yrs ago. If you're not a morning person, there's a professor that can teach the same class to you, at night online.
Btw, I wish you the best on getting a very basic book started that represents the Autistic people. I think Jimmy Fallon came out with, like, 2 children books. I don't know if the books are just well-rounded to fit into a whole category of things all kids would understand of his books target a specific audience.
I've made a coloring book years ago, but the lines on a lot of the characters in the book are too thin. Lol. I'd like to get back into that one day again. Now that I know how simple I want to make a coloring book. Just a matter of, like you, figuring out why I'm having such a hard time in finding an ENT who can see what's actually wrong with my eardrum. I had an ear issue 2yrs ago, but every ENT I've been to at a specific facility won't take really any time to help me at all. I'll have to look elsewhere. Can't keep going to a facility that uses the same practices, in terms of how they see a patient in a room, expecting different results.
With all these "origin stories" as you called them, you're like a superhero :)
lol, I do what I can.
Thank you for this introduction! Im very much enjoying your videos, they're becoming a cozy touchstone for me to chill to.
Invisible diseases/conditions are so hard to deal with. Im glad your wife has been there to help - and a whole family there to make you AMAZING-looking doughnuts :)
Thank you! Yes, I am very blessed to have my wife and children supporting me through this, I could not do it without them.
Thank you for sharing your story-so-far, there is much there that resonates. I am 68, un-/self-diagnosed autistic. Autistic spectrum condition wasn't a thing when i was growing up; the only model of autism recognised then was the non-verbal, learning-impacted, severe form, so it has been remarkable and liberating to watch the recognition of neurodivergency grow since the '80s, until now there is a networked and supportive community of people able to share our experiences. In the late '90s I was offered a test for ASC, while - ironically - working as a notetaker with autistic university students - I declined the offer, afraid of losing my job, which I know now would not have been the outcome, but was so used to living a hidden life (clearly not as well hidden as I'd thought 😂) the prospect of being 'outed' seemed terrifying. The change in attitudes and awareness and life-prospects for neurodivergent people that has come about in recent years would not be as it is without that willingness to share and be openly ourselves, and encourage and support others wherever and however; tea and doughnuts included. Hope your slow weekend is going well 🙂🌻
Thank you so much for sharing your story, I agree that there is more acceptance now than ever before. We still have a ways to go, but it is much better.
Watching you fold laundry was actually really relaxing! I liked it.
Thanks! I’m not as precise with the folding as I used to be, but I am getting it done and finding peace in the process so I call that a win.
I wish we could have autistic doctors. Wouldn’t they be more able to believe all the unbelievable symptoms we suffer? I mean…when would you ever present ”a sore tummy, swollen gut but No gas” and get a concerned reply. Health care sucks. But herbal tea is good. Your bunny ears are the best! More of those please! I feel better already😢
Glad you like the ears, they will definitely be back. I agree, I wish I could have an autistic care team, that would understand what I am dealing with.
Hey, as a Special Education Teacher, Im
so glad you made this video. Many young people slip through the cracks and aren't diagnosed with autism until later in life. Many autistic people have food intolerances which is why they only like certain foods like baby food😊
Try taking a food sensitivity test and maybe it will help to relieve some of your other ailments. Ps, I'm 42 and still like apple sauce.😂
That’s a good idea, thank you! 🙏🏾
As a 60 yr. old, on-the-spectrum, ADD, dyslexic adult, myself, I feel your pain. Love your videos!
Thank you my friend, I appreciate you and your presence here with me.
Thank you for sharing your story.
Thanks for listening, and being a part of what I am doing here. I appreciate you
It’s lovely to ‘meet’ you. Thank you for sharing your challenges (and towel folding 😀). I love to watch authentic folk in real, every day life. I feel a connection, albeit digitally❤️. Wishing you all good things xx
Thank you my friend, I appreciate you. 🙏🏾
The more I watch videos like this, the more I'm convinced I have undiagnosed autism. I finally persuaded one doctor to refer me to a testing organization and came in slightly under their cutoff limit for a solid autism diagnosis, but ADHD and some other cognitive issue came up that I wasn't surprised about.
I think if more medical professionals left their personal opinions out of the equation, based on their impressions of a person, then more people like me wouldn't be overlooked for not having a lot of the "typical outward appearances" of autism.
The past two years I've brought up the possibility to therapists and counselors and they have have a habit of asking me what's the purpose of me getting a diagnosis? Why do I want a label?
So frustrating.
Why does anyone want a diagnosis of a condition they may have?...to get help for it!🤦♀️
Support services, modifications, protection against mistreatment due to misunderstanding, etc.
I'm in my forties as well and it's comforting to see someone who looks like me, from my generation sharing their story of neurodifference.
My depression and anxiety has been a part of my story since my early twenties.
Yes! I had the same questions, why would I want a label? The reason is so I can stop getting the wrong labels. We are going to be labeled, there is nothing we can do about that. But if we have the right label, then our “Not being social”, or being “cold and distant” could be understood as our social anxiety, or being in a state of burnout from masking. Diagnosis can mean help. I was able to get occupational therapy, and while I did not get all the help I needed, it also helped my marriage because my wife had a better understanding of how I am wired. It also helped me to understand what was really going on in my own mind during moments of distress. I don’t use my diagnosis as an excuse, but as a way to understand what I need to work on to survive in a world not made for me.
You are just so pleasant to watch and listen to. Thank you.
❤️🖤🙏🏾
Eryykc, I can't thank you enough for your channel. I can relate to everything that you are saying.
I commend you for sharing your story. I've dealt with anxiety most of my life. I'm a highly sensitive person.
My grandson loves the squeezey fruit and veggies. He's 2, but I've tried them, and they're delicious!
I'm so very sorry that you suffer with Lupus. It's an insidious illness.
Thank you for sharing your story. You are absolutely incredible. Bless you.❤
Thank you for your kind words my friend, I hope by sharing my story to help others feel seen. 🙏🏾
And I thank you for your wonderful videos. I'm enjoying them immensely. 🙌❤@@Eryykc
So glad the algorithm led me here ❤
Me too! (Algorithm be Praised) It would be funny if there was a cult of the algorithm.
I love your vulnerability man, subscribed. Keep up the good work!
Thanks for the sub! I will admit it is awkward sometimes, but I think the best stories are the real ones.
your videos are so chill and soothing. also in every one I end up laughing because you do something that is so me! this time it was the "cheers" washcloth toast 😂
lol, thank you! I never know if I should share my cringy moments but it’s who I am 😬
@@Eryykc true you is the best you!
☺️
Your wife sounds wonderful. I bet her gluten free donuts are delicious, even without jelly filling. I used to help myself to my little brother’s baby food when I was a toddler. It was good then…still good now!
❤️🖤🙏🏾
EATING BABY FOOD IS MORE nutritional FOR YOU...ALOT OF BODY BUILDERS EAT BABY FOOD. I ALSO EAT IT. I SUFFER WITH PTSD AND PANIC ATTACKS. I WAS traumatized AS A CHILD AND NOW AT 63YR STILL SUFFER FROM IT. I AM ON SSDI SINCE I WAS 50YR. I ALSO SUFFER WITH LOTS OF HEALTH ISSUES. I KEEP TRYING TO STAY ALIVE...THANKS
Thank you for sharing your story, I appreciate you being here my friend. 🙏🏾
Thank you for this video. I am 46, newly diagnosed, "low level" (aka high functioning) autistic. It's been a long, confusing life so far but things are starting to make sense. I'm scrolling RUclips for creators like you to learn from, and to better understand myself. Thank you :)
🥰🥰🥰🥰thank you! I appreciate you
@@Eryykc 🙏☺️💜
Great to meet Wesley!
Love seeing your new art in the background here!
Cool about the baby food squeeze packs. I remember in a much earlier video you talking about liking a specific teething cracker.
You do have quite a few diagnosis. I am so happy you have the support you need.
Donuts are always amazing!
Good to see you folding clothes. I hate that so much really, it's my most difficult task to get through.
I am so happy I have found your channel. I do realize you don't know me at all, but you seem like a friend :)
Thank you! I appreciate you being here and spending time with me, even if it is just virtually. ☺️
Sorry to hear that brotha bless you stay strong and focused for a long prosperous life👏🏿💪🏿👏🏿
Thank you, I appreciate your presence
From one tea drinker to another, I love everything about your videos, which showed up in my feed this morning. And I'm so glad they did. Keep 'em coming and keep pushing and don't quit!
Appreciate you my friend, I will keep going. I may rest from time to time, but I won’t quit.
Wow your lupus story hits close to home my health declined in 2020 I was hospitalized several times and after a couple of years and new symptoms my primary care doctor said it’s seems like lupus but it could be hard to diagnose my goal this year is to be seen by the right doctor and diagnosed and start a routine to cope with all my symptoms. It’s nice to see yours videos of how you are doing.
Thank you for sharing your story, I am standing with you believing that you will get the answers that you need.
Thank you for making these videos. I find them helpful in feeling apart of rather than apart from.
You are so welcome, your presence here does the same for me.
I love baby food pouches too! They make it so much easier to get calories when my spoons are low or I have no appetite. Those donuts look amazing! Would it be possible to get the recipe?
She got the recipe from @theloopywhisk on TikTok, they turned out great!
You have a lot going on. Bless you. That sandwich looks great!
lol, that I do! Thank you for spending time with me.
I was surprised when you shared your different issues. Take that people complimented you as a positive. They were speaking Holy words. They were meant to lift You up. 🙏😊🙏. KCMary. Not to cause you harm. .
I appreciate that, I have a bad habit of assuming that if I don’t understand the meaning that it is an insult. Something I am working on, and part of my journey learning to conquer my insecurities and live a more peaceful calm life.
I thought I was already a subbie lol cause I been watching you for a while lol but I’m a subbie now lol
Thank you!
OMG! I feel so seen! I love baby food too!!! People think I'm weird because I do. I like a lot of the Stage 2 ones and the fruits too.
I don't like the texture of the Stage 3s.
I've heard it can take a long time to get a Lupus diagnosis because it can take a long time for the antibodies to show up in bloodwork.
I have Fibro as one of my diagnoses. I get the "but you don't look sick" too, and I don't like it either.
Thank you for sharing, yes it’s super annoying when people either gaslight you or try to push you into trying whatever the super cure is they know about.
Yes, exactly! Or you need to move more, exercise more, eat this, don't eat that, go on this supplement. Do this and your thyroid troubles will go away. Super annoying is right. I just discovered your channel today. Have a wonderful week!
@@EllieAngel23 you as well my friend
I have fibromyalgia. I don’t look sick. I love tea. Have you tried Harney and Sons and Adagio. They have great tea.
I have had Harney and Sons, but not Adagio. I’ll have to give them a try, thanks! 🙏🏾
@@Eryykc enjoy!
Its techniques out here
?
Despite any of your obstacles that you are facing, you have a awesome speaking voice!!! Im surprised youre not a radio DJ or speaker that does pod asts!!!
Wow, thank you! I used to have a podcast, but I like making videos more.
omg I love baby food too!
🖤❤️🙏🏾
For me, I could see myself ... 1:45 ... saying something like what you said, which can annoy you. But, it's not intended to be meant that way. So, please understand and forgive people for doing that. Because it's not that people are trying to annoy you or belittle your diagnoses, it's just that they look at you as "Perfectly Healthy" -- as I would. Then, they wouldn't understand totally why you are saying you having all of these conditions, because when someone says they have a lot of medical problems (e.g., my wife and some of her recent surgeries), it's hard for people to believe that she deals with that stuff, behind the scenes, because she is so hard-working, always on-time at work, working late into evening, etc. So, in your mind, you should reframe it to be "a compliment".
However, it might feel the same way as when people would tell me, "Your Dad is in Heaven now and by the right hand of God" -- after he passed from a long-term illness but it was unexpected, and I have lost him forever. So, they tried to tell me that he's saved and will live in Heaven now. But, over time and through painful experiences, I have become someone who doesn't believe now. So, telling me that God said it's time for "Dad to come home", instead something I wanted to hear when I was younger. And, it was something that angered me (at first) after his passing. But, over time, I realized that they mean nothing by it, but it's THEIR WAY to cope with loss and to let it go, where they can go on and live their lives. But, for me, I can't let it go, because it happened to me and really affected my life, forever after that day in the hospital.
So, hopefully, I gave you a comparison to help understand people better. And, that's not my original idea, but it was what my Therapist told me to help me understand people's behaviors.
Thank you for sharing your perspective, and for being vulnerable and sharing about your loss. I will keep this in mind, because you are right, most people are probably just trying to find something to say. I will try to extend compassion towards them as well.
Have you ever been tested for Lyme disease. Thank you for sharing. Sandwich looks good❤
I get that question a lot, yes I have and I do not have Lyme disease.
This is so interesting. I just commented about people possibly gaslighting in one of your previous videos. Before clicking on this video. Lol. In this case, you gave a good example, in terms of them trying to be uplifting and positive. Though the person who isn't feeling good is indifferent.
Just curious. Was it the Lupus diagnosis, that was the breakthrough for the health care providers? To help identify the other trail of disorders and healthcare concerns, down the rabbit hole of all your questionable concerns? Did they diagnose the Lupas first, then check for an Autism diagnosis?
I'll try re-watching this again tomorrow, but it sounded like your recommendation to request to be tested by your therapist, was done first, before they discovered the Lupas. Then the anxiety and such?
I didn't know you could ask your therapist to request to be tested. I'll have to ask them the next time I can set up an appt. But the kicker is I wouldn't want to draw any kind of disability checks just yet. I hope that, even on the higher end spectrum, you can still apply for a disability check around retirement age. If that's even a thing. Thanks for this insight! ✨
I tested for both around the same time, and received the Lupus and Autism diagnoses within a week of each other.
You are wonderful but I need to tell you that when I typed in eryyck -- there came up so e very weird things that weren’t you. I hope your channel overwhelms them. I think it will.
I hope so too, time will tell.
What kind of medications do u take for your mental and phisical health?
Hmm, I hesitate to answer because medications are such a personal thing. Our physiologies are different, and what works for me may not work for someone else. I will say I am on medications for my physical and mental health, but I am not ready to make my prescriptions public just yet. I will say, don’t be afraid to tell your doctor if what you are on doesn’t help you, but also remember that medication is only one piece of the puzzle.
If this was a one on one conversation I would gladly tell you, just not ready to have that list on RUclips.
@@Eryykc i understand thanks