Day in the Life with Chronic Illness: Dr. appointments, wanting to build community
HTML-код
- Опубликовано: 5 окт 2024
- Come along with me as I go to my various medical appointments, and think about life, community, and whatever else pops into my head.
Want to add my books to your collection of poetry?
Pick up a copy from Lulu at www.lulu.com/s...
Music: Gentle and Soft Piano Jazz, by Noi m knot
Discord is a lovely way to have a sort of spot to interact and have interaction and conversation.
I'm so glad you hold space for folks and share of yourself. Your videos have been hugely supportive and reassuring as I explore my own chronic illness journey as an adult audhd'er.
Thank you, I am on Discord (Eryykc), not sure what I will do with it yet. I did a call with a few friends and it was a bit overwhelming, maybe next time I’ll only have chat running and I’ll just talk. I should probably have a topic in mind before I hop on.
That is an overwhelming amount of things to accomplish in one day. Great job. I didnt hear complaining, i heard sharing. It IS difficult.
My max is two tasks where i have to haul my rollator out of my car. I can do more if i can stay in my car....like the pharmacy drive thru or mobile pickups at the library. And not on back to back days either.❤
Yes it was very overwhelming but finding quick, enjoyable stops throughout the day really helps.
I miss people blogging like they used to! It felt like I was reading a journal that someone was brave enough to share. I don't use Facebook, it just never suited me. And I heard negative things about Substack having a lot of writers using hate speech. I'm just not cool with supporting hate in any form, so I've stayed away from that as well.
As for building a community, I don't know a whole lot about Discord myself. But there are a lot of people who use it for creating safe spaces of communication. I first became familiar with it because of my kids. They used it for safe spaces to play online games with their friends because open game chat can be incredibly toxic.
Rocking the paper gown by the way! 😊❤
Thanks! I’ve thought about blogging again, I journal all the time, maybe I could look into that again.
Good to see you my friend ❤
😁
Gosh that was a lot to accomplish in one day! Well done! I hope you gave yourself time and space to rest, and I appreciated you correcting yourself when you said about complaining. Living with chronic pain is tough and being told we're complaining/being ungrateful (being socialised to just grin and bare it) is very invalidating of the struggle. I catch myself doing that too, not speaking up when I'm struggling, but I'm getting better at it though! showing kindness and compassion to ourselves is important. Fellow chronic pain haver here, from the UK. So happy to have stumbled upon your channel 💜
Thank you my friend, and yes I have to work on undoing the influence of society that often made me feel like I have to make my pain and problems easy for those around me.
Blessings 🙏
🙏🏾
Wow, Eryykc! You handled all
Those appointments with ease! Love the paper gown look! Ive tried that look myself😂 I’d love to read some chapters of your book. I really love how you work in some nice things like nature walk and coffee in your heavy appointments day. Your channel is so nice, real and relatable. Love it! 🍁🍂🌻💕
Thank you! I have to build in small enjoyable moments when I can or the whole day feels awful.
Completely relatable.
Grateful for your videos.
❤️
Thank you my friend ❤️🖤🙏🏾
❤
❤️🖤🙏🏾
Morning Eryykc, that is a lot of appointments. One is more than enough for me, I get screwed up and hope I can express myself properly. Not heard of discord or sub stack. Have a good day my friend xx
❤️🖤🙏🏾
Today was a good day from this side of the camera. 3 coffee stops is my vibe and I am happy that the timing before and between appointments allowed for those moments.
Sir, your paper gown fashion show will be all the rage very soon. Don't be surprised when you see people wearing them in public. (just kidding - I hope)😉🙂
SubStack and Discord are things that I have heard of, but never explored. If your research leads you try them, your content will be my ground floor on either platform. Thank you for posting. ❤
Thank you! I am not sure what I’m gonna do but I’ll keep you posted.
I have so many thing I want to do. But fibromyalgia limits what I accomplish. Love your vids. Peace to you, my friend
Relatable, my Lupus and other health issues slow me down and keep me from doing everything I want to do at the speed I want to do it.
My appointment days have been similar over the last few months. Next week is full of appointments, I think I have one day with nothing to do. 🤦🏽♀️ One of those appointments is a pain management one, and I am not sure what that will be like. Hopefully, the outcome is good for you as well. I need to incorporate coffeeshop stops into my appointment days, it just seems like a good way to take a break in between it all. I hope you are having a great day!
Making time for small breaks is so very important, it keeps me sane
I have an appointment next week with my Doctor. I don’t look forward to those. A cholesterol check. She’s always trying to talk me into a stronger Statin. I say no. My favorite time when appointments are over is to get in the vehicle and drink my cold brew!
Yes! I don’t know about you but statins make me feel like garbage for some reason
Hi hi ^_^ I use to use Discord, but I never anymore plus I don't like Facebook either lolz
I only keep my Facebook account for my saved app games. Also, I love all the Claymation holiday films!!! I can relate to that big time. Even though Tiktok is there, I don't use it. I still have RUclips always and Instagram. ^_^
I use to feel so much pressure when I use to go live like on Twitch, even though I have met many new friends and my Husband! :D but I like the peace of quietness lol. Enjoy the rest of your weekend good sir ^_^
Whatever we do, it needs to be calm and quiet and peaceful.
Hey Eryyck 👋🏾
Hi! 🥰
"Alright friends... it's time to get up, actually it might not be, I don't know your life" 🤣🤣
Never truer at the moment, watching this at nearing midnight with a whisky.. 😂 (don't worry, I stretched, ate and drank water earlier 👌😉)
I managed to get out with Buddy yesterday for quite awhile, loved it, but suffering for it today 😞
You rocked the paper gown my friend, when I have to wear them they just look like a paper bin bag on me! I'm tall and slender, so they're not very fitting/flattering on me 😅 (and have been made to wear them more times than I would like/deem necessary)
I need another appointment with my Dr soon, the meds I take for I.B.S and it's unwelcome symptoms are no longer working as they did, which causes problems as you can imagine.. 😳😞
I too do not like facebook, (I am however on instagram, owned by them) but I am on discord though (same name and profile pic), in several separate groups, all of it is private and not shared elsewhere 👍
Personally, I've never felt like I've "belonged" anywhere. No-one ever needs me, wants me, nor asks for me neither. Only when I turn up, they ask "How are you" or "What've you been upto".
I have friends, but literally, over 100 miles away from where I and Bud are, so truthfully, I can get a tad lonely sometimes, even though I have Buddy for company, he doesn't chat much! 😂
But as for belonging? As a traveller at heart, I guess I'm still searching for that place I belong.. "Linkin Park - Somewhere I Belong" springs to mind..
Anyway, apologies for the essay.
Hope you're well.
Take care
All the best
D & B 👍
Please never apologize for the essay, I love reading them. It’s like getting a letter from a pen pal. I like that Linkin Park song, it’s always resonated with me.
10:15 - YES YES YES and YEP!!! 100% Too many ideas, not enough time and proper direction of my energy lol
Discord - heck YES! If you need any help with that, please let me know, I would love to help. Even with RUclips help and things like that it can be very overwhelming. I feel like it's extremely different than any other communication platform I've used before. Partly because there's just so much you are able to do with it, and it's hard to understand how everything works when you haven't done it before.
Are you in any discord communities at all, or have you seen or used it ever?
I would suggest making a "test" discord literally just to mess around and experiment with things if you have the time. It's really useful if you have two accounts - the one you "own" the discord and a "smurf" account that is useful for seeing the discord from a new person/viewer's perspective without all the permissions and such.
Island of Misfit Toys! I watched that movie every christmas as a kid. :)
So I did create a test account, you are right there really is a lot going on with it. I only used it with my son and his friends during COVID, we used it while playing Among Us.
Hi. Well my opinion . Just a Community of Peace. No titles/ No Names / Place of Peace on Earth Community. ❤ Simple Peace on Earth Community. Places Coffee Shop/ Nature/ Tea Coffee Picnic by water in Nature. Walks. Etc. Suggestion. We come together Our Peace on Earth Moments Community 🙏
🙏🏾
Never been on a substack before. I've used Discord briefly (by invite) and it was a bit confusing to navigate, for me. I've joined a community on a thing called Circle, but I don't think it has a real time group communication feature. But, I like Circle. It's a lot like facebook in its feed, but has a list of topics along the side (similar to Discord in that way?). Maybe it does have a real time feature, but we are an autistic community and probably would not like a ton of people communicated all at once (I know it overwhelms me, because I have a tendency to want to read and understand everything). My preference would be for something as easy-going as the piano jazz tune of your content, here. Just a thought.
Yes, I tested Discord with a few trusted friends and I found it very overwhelming. I don’t think I’m gonna change anything just yet. I want to have something but it needs to work for our neurotype.
Facebook may actually be the best bet for a private group where we can talk and share. I run a popular FB fitness group its really easy. My opinion only.
True, I’ve just had bad experiences on Facebook so I have a bit of a mental block. Maybe I should give it another try
@@Eryykc awesome
Wow 4 appointments. Whew. Yay coffee shops and Mother Nature taking care of you.
Yes to sharing creative ideas and projects in a safe space. Cool idea to share while they are in progress to get feedback. I have FB for 2 private groups but don’t use it or participate as FB brings on migraines for me. (No matter the device used to access it.) I used discord in the past when I did online gaming. No clue about sub stack. I get a newsletter from someone who uses it…. That’s all I know about it. So helpful… right?
I like the idea for a place for us to communicate in private. I lost where I copied your email address you left in a comment on a video many months ago. There are some things I will not leave in Public that would be cool to share.
Today’s Fun Fashion show 10/10. 👏🏼👏🏼👏🏼
Discord is ok, but not very intuitive for me. My son and some younger friends seem to live there, for what it's worth. I have a small whatsapp group of fellow chronic pain patients, and it is a wonderful place; I have a feeling anything you create would be wonderful, too.
And as others have said, I don't know how you do four appointments in one day. I'm shattered after two.
For me the biggest part is having a plan and scheduling fun stops along the way. The shop I start days like this, the owner also has chronic illness so I can vent and share and she gets it, plus the mid day stop has a retired nurse who works there and she also gets it, plus I have you guys virtually with me. I couldn’t do it alone.