6 months ago my work said there wasnt the technology to work from home, now 70% of the workers are at home and they have a remote program. (I'm in a customer facing position and did switched to at home last friday because people are forgetting about the friggin PLAGUE and licking fingers when they count money that they give me). I'm so grateful to gave a work from home position now but a little frustrated that disability wasnt deemed an appropriate reason to start this program until a pandemic.
YES! Very complicated feelings for sure. Glad it's here, very disappointed/hurt at the clear discrimination, and anxious about whether or not it will stick around.
@@theannieelainey very true. I'm hoping I can continue work from home with the argument of, it's still needed and I already have a work computer so it's not they can say the expense it too much? I have lupus and I'm looking into an eds diagnosis as well because your story sounds a lot like my childhood but my lupus only activated in my teens
Kinda reminds me of something I was thinking yesterday: "I'm expected to remember that most people prefer their food hot but nobody ever remembers that i take sugar in my coffee."
well, one positive thing that happened was that i started doing watercolor painting and am actually decent at it AND i'm using my non-dominant hand because of my undiagnosed encephalitis. my mother is even willing to invest in my new hobby!
Things I've learned so far: -I started cooking -How to take better pictures -Painting rocks is actually really fun! -taking time off my phone is important and enjoyable
This video was so calming? in a way. it is good to feel seen like that when everyone else seems to be ignoring (particularly young) chronically ill or disabled people. I'm currently not in a place to do productive things as my body is in flare at the minute and schoolwork is absolutlely destroying me. I've been focsuing on bullet journaling and trying to manage my brain while my body is struggling (even those are interchangeable, but i don't have the language to describe that yet). thank you for sharing this
This was just what I needed to hear. Thank you! I just had my first EDS specialist/cardiologist appointment on March 17. Three days later my Doctor called to say he may have been exposed to COVID19 (he was luckily not affected). The rest of my testing is now in limbo as is my likely diagnosis of EDS/POTS. I’ve had few people to talk with about it either. Listening to your words were very comforting and appreciated. Take care.
Sigh, yes, it is so scary and frustrating to have our so many of our medical journeys hit a pause. Also the anxiety of needing to go to the hospital and the hospital being too risky or to overwhelmed to get the help we need. Oof. It's hard ❤🙏
I've been grounding myself in fiction lately. I've read a lot of books during quarantine and it's been really helpful to just help me get through this.
this is awesome, I am autistic and have been finding all this ver hard, mentally its been hard a lot of anxiety and self harm, lots of bad dreams too don't know if the dreams are linked to anything. Thank you so much, stay safe. Things I have been doing are my allowed exercise (checkout local/national laws about this for where you live), talking to friends online and reading. I have executive dysfunction which is hard also
Bad dreams are often because of that anxiety/stress that is affecting our sleep. Aww and yes, I'm sure executive functioning is tough for so many of us right now 🙏
Reference to being chronically ill and as a result, isolated at home often: I try and relish in creature comforts that are often only available at home. Access to rest and comfort are important to me, and being at home makes that so much easier and safer to do. Having my useful things and my pets close by is wonderful. I try and remember that "home" is an essential human place, and wanting/needing/preferring/finding some joy to be at home are all completely okay. I love being out doing things & and being with people too! It's absolutely needed for many! But having to justify being at home (pre-pandemic) feels weird to me at times because it feels like we have created this expectation that we all are out consuming or hustling at all times, and anything other than that is wrong or needs to be explained. Thanks again for your suggestions!
Hi Robin-I like your comment and plan on texting a bit of my story when I can. I have been mostly home for 6 years. I really understand what you say about having access to rest and comfort and having my useful things all around me within easy reach. I guess I had an easier time with the sheltering in place rule than people who have jobs and were going out and about all the time. Anyway I just wanted to say "Hello". Kath
Self diagnosis and self therapy saved my life more times than peers or professionals. There needs to be more acceptance of these things, and more trust given to patients who have been forced into self management positions, since they have done a lot of work that people who don't have to do self management haven't started. I continue to appreciate your balanced perspective regarding disability issues. I have struggled to find compassion at times for the non-disabled people isolating right now, and it helps to see you offering both valuable advice and reasons to be grateful for those who are isolated without chronic illness or physical limitations.
Thanks for sharing your accumulated knowledge. Ive been spending my time reading. Last year i went through the grieving process after being diagnosed with my chronic illness. So being home for the most part hasn’t been difficult. However, it wasn’t easy at first.
This video was dope too. I remember hearing Kayne West speaking about a world where architecture and infrastructure was catered to the elderly because it helps minimize daily obstacles and because eventually we’ll all become old people anyway. He made a good point to me. In my situation I’m not able to walk or stand but have loud and rude neighbors across from my apartment, beside my apartment and above my apartment. I’m probably a selective extrovert because I feel brave enough to do certain activities but for most of the time I like being to myself and enjoying peace with multiple periods of quiet time. I’m trying to provoke negativity but I’m starting to think maybe start taking advantage of my situation. Maybe whenever I try to take out my trash I’ll purposely dump my trash on my neighbors door and say oh my if only I could…. Never mind peace. Best wishes to everyone, no matter what
I wish I had peace in my home. One neighbor blasts their TV and the neighbor above me drags their furniture across the hardwood floor every other day. Management basically doesn’t care as long as it’s not between 10PM to 7AM.
the part about grieving your body made me cry (14:09 and on) thank you so much for making this video and for putting these feelings into words. if im not distracting myself from my pain constantly i will have a meltdown (im also autistic). it is so overwhelming to be in constant pain and no one understands what im going through so i just have to suffer in silence.
I have hEDS, and I am so SO glad I have found your channel, Annie! I've been coping remarkably well with the stay-at-home order in my state, because of all the practice I've already had with not leaving most days! :) I spend a lot of time watching other people play video games, on Twitch and TH-cam, because watching is free - and it doesn't wear out my hands! Leaving me free to write and edit and upload my fanfiction to the web - I have a backlog of over 200 stories! I've been really enjoying the Tested TH-cam channel, run by Adam Savage of Mythbusters; he's getting into middle age and is REALLY good at dispensing wisdom - while being criminally neglectful of his own health... XD Nobody's perfect! I don't know how far I'll get with fic-uploading, studying Japanese, watching a FULL Let's Play of FF7 Remake - I keep starting new ones and not sticking with just one - or any of that, but I have actually felt a lot calmer since the stay-at-home order started, since now? I have all the time in the world to do whatever I want, and nobody will say that it's 'laziness' - now it's my civic duty! :D
Thank you so much for this video! It was very encouraging to me. I have been doing most of the things you recommened already, but hearing someone else -- especially someone with experience in being homebound -- say all of this felt really good.
This was such as lovely and helpful video to watch, thank you so much for sharing your experience!! I've been struggling with my anxieties recently, a few days ago I had the worse and scariest panic attack I haven't had in years and it shook me a lot. I'm now trying to take it one day at a time, trying not to get too overwhelmed and to get help when I need it. I hope you are well and stay safe
Aww thank you so much! It's tough doing it all on my own but I'm trying! I have a couple more videos that still need to be edited but my ability to focus has been really rough with all that is going on! But I'll be around! ❤
Lol! My son’s Lego collection got so jumbled we decided to break them down, take inventory, box them up and remodel a lego playroom to organize it all. We are currently remaking all the sets as a family.
![I have cognitive dysfunction (Brain Fog) [CC]](http://i.ytimg.com/vi/w6EhIFiTh3E/mqdefault.jpg)
![I have cognitive dysfunction (Brain Fog) [CC]](/img/tr.png)
![Disability Misconceptions Tag (EDS) [CC]](http://i.ytimg.com/vi/sBSzm9RbXAY/mqdefault.jpg)
![You're Not Useless [CC]](http://i.ytimg.com/vi/_2H7upHDIM4/mqdefault.jpg)
![[UNCUT] The Loyal Pin ปิ่นภักดิ์ EP.6 (1/4)](http://i.ytimg.com/vi/m05kZ2GDKXg/mqdefault.jpg)
![Autism Q&A [CC]](/img/n.gif)
6 months ago my work said there wasnt the technology to work from home, now 70% of the workers are at home and they have a remote program. (I'm in a customer facing position and did switched to at home last friday because people are forgetting about the friggin PLAGUE and licking fingers when they count money that they give me). I'm so grateful to gave a work from home position now but a little frustrated that disability wasnt deemed an appropriate reason to start this program until a pandemic.
YES! Very complicated feelings for sure. Glad it's here, very disappointed/hurt at the clear discrimination, and anxious about whether or not it will stick around.
@@theannieelainey very true. I'm hoping I can continue work from home with the argument of, it's still needed and I already have a work computer so it's not they can say the expense it too much?
I have lupus and I'm looking into an eds diagnosis as well because your story sounds a lot like my childhood but my lupus only activated in my teens
Kinda reminds me of something I was thinking yesterday: "I'm expected to remember that most people prefer their food hot but nobody ever remembers that i take sugar in my coffee."
well, one positive thing that happened was that i started doing watercolor painting and am actually decent at it AND i'm using my non-dominant hand because of my undiagnosed encephalitis. my mother is even willing to invest in my new hobby!
That's so awesome!!
Things I've learned so far:
-I started cooking
-How to take better pictures
-Painting rocks is actually really fun!
-taking time off my phone is important and enjoyable
Beautiful!
This video was so calming? in a way. it is good to feel seen like that when everyone else seems to be ignoring (particularly young) chronically ill or disabled people. I'm currently not in a place to do productive things as my body is in flare at the minute and schoolwork is absolutlely destroying me. I've been focsuing on bullet journaling and trying to manage my brain while my body is struggling (even those are interchangeable, but i don't have the language to describe that yet). thank you for sharing this
Take care, angel!! ❤❤❤
You're able to articulate this is in a much better way than I am. Mostly I just want to scream "this is what I've been saying!"
Aww, thank you!
@@theannieelainey you're SO welcome ❤️ your videos are doing a lot for me right now.
This was just what I needed to hear. Thank you! I just had my first EDS specialist/cardiologist appointment on March 17. Three days later my Doctor called to say he may have been exposed to COVID19 (he was luckily not affected). The rest of my testing is now in limbo as is my likely diagnosis of EDS/POTS. I’ve had few people to talk with about it either. Listening to your words were very comforting and appreciated. Take care.
Sigh, yes, it is so scary and frustrating to have our so many of our medical journeys hit a pause. Also the anxiety of needing to go to the hospital and the hospital being too risky or to overwhelmed to get the help we need. Oof. It's hard ❤🙏
I've been grounding myself in fiction lately. I've read a lot of books during quarantine and it's been really helpful to just help me get through this.
this is awesome, I am autistic and have been finding all this ver hard, mentally its been hard a lot of anxiety and self harm, lots of bad dreams too don't know if the dreams are linked to anything. Thank you so much, stay safe. Things I have been doing are my allowed exercise (checkout local/national laws about this for where you live), talking to friends online and reading. I have executive dysfunction which is hard also
Bad dreams are often because of that anxiety/stress that is affecting our sleep. Aww and yes, I'm sure executive functioning is tough for so many of us right now 🙏
Reference to being chronically ill and as a result, isolated at home often: I try and relish in creature comforts that are often only available at home. Access to rest and comfort are important to me, and being at home makes that so much easier and safer to do. Having my useful things and my pets close by is wonderful. I try and remember that "home" is an essential human place, and wanting/needing/preferring/finding some joy to be at home are all completely okay. I love being out doing things & and being with people too! It's absolutely needed for many! But having to justify being at home (pre-pandemic) feels weird to me at times because it feels like we have created this expectation that we all are out consuming or hustling at all times, and anything other than that is wrong or needs to be explained. Thanks again for your suggestions!
Hi Robin-I like your comment and plan on texting a bit of my story when I can. I have been mostly home for 6 years. I really understand what you say about having access to rest and comfort and having my useful things all around me within easy reach. I guess I had an easier time with the sheltering in place rule than people who have jobs and were going out and about all the time. Anyway I just wanted to say "Hello". Kath
Self diagnosis and self therapy saved my life more times than peers or professionals. There needs to be more acceptance of these things, and more trust given to patients who have been forced into self management positions, since they have done a lot of work that people who don't have to do self management haven't started.
I continue to appreciate your balanced perspective regarding disability issues. I have struggled to find compassion at times for the non-disabled people isolating right now, and it helps to see you offering both valuable advice and reasons to be grateful for those who are isolated without chronic illness or physical limitations.
Professional diagnosis is a privilege for so so so many reasons! 👏👏👏
This video has been incredibly helpful, and soothing to listen to. Also, I’m deeply in love with all the purple. 💜🔮🦄
Thanks for sharing your accumulated knowledge. Ive been spending my time reading. Last year i went through the grieving process after being diagnosed with my chronic illness. So being home for the most part hasn’t been difficult. However, it wasn’t easy at first.
Definitely a transition! ❤❤❤
This video was dope too. I remember hearing Kayne West speaking about a world where architecture and infrastructure was catered to the elderly because it helps minimize daily obstacles and because eventually we’ll all become old people anyway. He made a good point to me. In my situation I’m not able to walk or stand but have loud and rude neighbors across from my apartment, beside my apartment and above my apartment. I’m probably a selective extrovert because I feel brave enough to do certain activities but for most of the time I like being to myself and enjoying peace with multiple periods of quiet time. I’m trying to provoke negativity but I’m starting to think maybe start taking advantage of my situation. Maybe whenever I try to take out my trash I’ll purposely dump my trash on my neighbors door and say oh my if only I could…. Never mind peace. Best wishes to everyone, no matter what
I wish I had peace in my home. One neighbor blasts their TV and the neighbor above me drags their furniture across the hardwood floor every other day. Management basically doesn’t care as long as it’s not between 10PM to 7AM.
Aww that's awful, and I'm assuming headphones don't help? Hope you can find other ways to keep your spirits up! 🙏
I rarely comment on videos, but I’ve been trying to change that lately. this was rad, thank you🌷❤️
Thank you so much!! 🙏
the part about grieving your body made me cry (14:09 and on) thank you so much for making this video and for putting these feelings into words.
if im not distracting myself from my pain constantly i will have a meltdown (im also autistic). it is so overwhelming to be in constant pain and no one understands what im going through so i just have to suffer in silence.
I have hEDS, and I am so SO glad I have found your channel, Annie! I've been coping remarkably well with the stay-at-home order in my state, because of all the practice I've already had with not leaving most days! :) I spend a lot of time watching other people play video games, on Twitch and TH-cam, because watching is free - and it doesn't wear out my hands! Leaving me free to write and edit and upload my fanfiction to the web - I have a backlog of over 200 stories! I've been really enjoying the Tested TH-cam channel, run by Adam Savage of Mythbusters; he's getting into middle age and is REALLY good at dispensing wisdom - while being criminally neglectful of his own health... XD Nobody's perfect! I don't know how far I'll get with fic-uploading, studying Japanese, watching a FULL Let's Play of FF7 Remake - I keep starting new ones and not sticking with just one - or any of that, but I have actually felt a lot calmer since the stay-at-home order started, since now? I have all the time in the world to do whatever I want, and nobody will say that it's 'laziness' - now it's my civic duty! :D
Thank you so much for this video! It was very encouraging to me. I have been doing most of the things you recommened already, but hearing someone else -- especially someone with experience in being homebound -- say all of this felt really good.
I love that you caption your videos cuz I cant hear shit.
Hi
This was such as lovely and helpful video to watch, thank you so much for sharing your experience!! I've been struggling with my anxieties recently, a few days ago I had the worse and scariest panic attack I haven't had in years and it shook me a lot. I'm now trying to take it one day at a time, trying not to get too overwhelmed and to get help when I need it. I hope you are well and stay safe
Thank you so so much ❤️❤️❤️ I’ll still be here when all this is over too.
Planning gardens on paper makes me happeh.
I thank you for sharing this.
❤❤❤❤
I'VE MISSED YOUR VIDEOS ❤❤❤
Aww thank you so much! It's tough doing it all on my own but I'm trying! I have a couple more videos that still need to be edited but my ability to focus has been really rough with all that is going on! But I'll be around! ❤
So good to see you in my feed! lovely video. hope you're doing well💜💜💜
Great video, thank you for your thoughts and suggestions! This is so helpful!
Great Anney. Thanks
Just catching up. This is well done and important. Thank you for sharing
What I do when I'm board...building with Legos.
Lol! My son’s Lego collection got so jumbled we decided to break them down, take inventory, box them up and remodel a lego playroom to organize it all. We are currently remaking all the sets as a family.
This is a great video.
ah so good
You should collaborate with goodtimeswithscar
how did we have the same fantasy???? lol were you in a cozy rob wit cozy slippers???? I know was lol
দয়া করে কেয়ার লাইফ বাংলা ভাষায় অনুবাদ করে দাও।
সেলফ্ কেয়ারের ব্র্যান সমন্ধে আলোচনা বাংলা ভাষায় দাও।
সেলফ কেয়ার হবে নিচের কমেন্ট।