u/No-Clerk-5245

Not sure if this is a feature and I just can't find it or if this is a suggestion. I'd love the ability to set a total amount of time I can use an app before it's blocked for the day. I know this is possible if I go over my time whilst in the app, but I can easily get around this by closing it and reopening it--which allows me all the time I want again. Is there any way I could set a total amount of time an app can be open during the day before it's blocked? I'd love to set daily limits like 10, 30, 20 minutes and then every usage of that app counts towards the goal. That would be super helpful, otherwise I can just get around things too easily.

Alright, I want to start seriously taking an antihistamine stack. I plan to see an immunologist about this, but also know there's so much trial and error involved. Would love to know what antihistamines you take, how much, and how often! Thanks!

for context: I already take promethazine 25mg once a day. it helps but I have an insanely long way to go because of how seriously debilitated I am with mental and physical fatigue and just overall short of breath. having to lay in bed unstimulated most of the day 😞 and ketotifen and cromolyn made me worse 😬

I have ME/CFS, which limits my ability to speak, look at screens, and listen...sort of all the important things you need to do when producing music. Some of these tracks I made in painstakingly small chunks--think a 5 second vocal take, a minute of editing a day. I thankfully felt a little better this year and was able to finish, but this was a huge feat. I wanted to share as an encouragement to other musicians/artists who are creating within small limits as well. Your perserverance in the craft is something few will be able to fully understand, and I salute you as someone who does.

A little bit about this project: I first began writing these songs 13 years ago after a series of Humanities lectures on Greek mythology (yes, including The Odyssey! My track "Sweeter Song" is based off the scene with the sirens) that forever changed the way I viewed story, longing, and faith. The main thread of the EP is the longing for home. It follows the path from yearning for our true country, through the war of life, to the final hope of restoration where pain and death are no more.

I don't know which is best, so I'll attach my spotify link here, but you can also find these songs on most other streaming platforms, YouTube, and BandCamp. My artist name is Elizabeth Boyd and this album is titled, The Myth & The Mystery. I hope you enjoy it, and if creating makes you happy, keep making your art no matter how long it takes <3

One of my songs is sitting at 28, and I've read 30 is where the magic happens. Not sure how accurate this is, but I'd love to know how I can get this up into 30 😅🙏

Didn't know if this had been posted yet or not, but thought I'd share just in case. For those of us on benefits in the US, there are limits to our resources that are pretty ridiculous and feel driven to keep us in poverty. I had previously heard of ABLE saving accounts, this is a bank account that the government will not count against you because it is protected for disabled individuals and has certain restrictions that allow for its use to be based on criteria like housing, travel, medical bills (you can still withdraw your money for anything, but there's a small penalty if it doesn't fit an approved category).

Previously, they had an age limit at 26 😑 where you had to have your disability prior to 26 to qualify...well, this year, they changed that to 46!

I know that opens the door for so many more of us to have a saving account like this. I suggest looking into the specific site for your state, but here is the general information from an official website:

https://www.ssa.gov/ssi/spotlights/spot-able.html

I set mine up last night and there's even a gifting page for others to donate to your account! I know I've had SUCH a hard time getting family to help financially because they question where the money is going. I think this could help a lot because you can't have the account unless a doctor signs off on it, but also, because the website promotes its use for certain needs, people can feel a little more confident that you'll be using this on rent or medical bills.

I hope this helps someone else!

Okay so I'm trying to decide if I need to go to urgent care or not 🫣 last week I had a lot of chest pain, and while that's not a completely new symptom out of my norm it was a lot more than usual. I started spotting since--which is new, so maybe my body is under new stress? I thought it would change after the doctor exam I was nervous for ..like maybe it was just tied to mental stress but it's stayed; the spotting is super light though so that's reassuring some.

I haven't had chest pain since but the thing I'm concerned about right now is how much fatigue and shortness of breath I'm dealing with. Obviously, these are symptoms I already struggle with but they've ramped up in ways I haven't seen in myself recently.

I do think I over did it physically for the 4th. I made dinner and so I was on my feet more than usual and using my arms, even though I took a lot of breaks and did it in super tiny chunks. So maybe that just made everything worse, too. And I could be strained from the appointment last week, of course.

But using scissors today made me feel faint? And I could barely get out a sentence earlier this afternoon. I'm feeling sleepy a lot these days and actually nap (very unlike me to nap) and am just more short of breath. I can't tell if this is a bad flare or if this is something going wrong 🥹 maybe I should rest all day tomorrow without screens and stay completely in bed to see? And if it's still bad, do something? I don't feel like I have to jump in the car asap, but it's hit a point now symptom wise where I'm asking myself these questions and am a bit concerned.

This might just be a very bad tumble, in which case going out will obviously make me worse, so I want to be wise...and I never leave the house unless I have to because it affects me so negatively on a physical level... but it might be important to do if these symptoms persist to just have peace of mind and cover the bases? I don't know what to do 🥺 this seems like a dilemma a lot of us face and would just like to hear experiences. I obviously know you can't jump into my body and tell me exactly what to do, but just curious how you think about these things 🙏

also, for context all my vitals are stable.

I currently live at 4,500 feet but grew up in Florida where I was at sea level. I lived here for two years before my MCAS kicked in, along with ME/CFS and orthostatic intolerance, but wondering if I would do better at a lower altitude/elevation? Has anyone noticed improvement going lower?

For context: I'm mostly homebound and for the past year and a half, only left the home for doctor appointments because of difficulty in car rides and orthostatic intolerance...as well as little ability to have face to face conversation (think 2-3 minutes before feeling faint, if I don't look at the person and just comment here and there I can last a bit longer, but it's still small limits). It's hard to imagine going out to do anything social because of how little talking would be involved and how short the trip/visit would be, and so I just haven't.

My mom died suddenly after a short stay in a medical facility. It felt out of the blue because she seemed to be doing okay and was told she would have a full recovery by her doctors. We live together and I was expecting her home soon. I didn't visit her while she was away. I didnt realize the week leading up to her death that she was deteriorating fast. I didn't call her because calling is hard on me but I also didn't ask how she was in emails...I don't know why. I just knew she had some stomach upset and to Amazon her some Gatorade and protein drinks...If I had gone to see her, I would have known she wasn't doing well. After her death, I saw a picture of her at the facility and she looked incredibly frail. I may not have demanded she be transferred to the hospital then and there (there's unfortunately a good amount of medical negligence that happened and they should have sent her 😭) but seeing her in that state would have been enough for me to take seriously. And to at least keep in better touch.

The facility was just down the road from me, and she was there for three weeks. A friend drove me to get blood work and passed right by where she was staying. I told myself on the ride over to stop and see her afterwards, and then as I got back in the car again I thought to go say hi. But I told myself that it could be overexerting and what if I crash. But when I got home, I felt fine and definitely could have gone.

I've been really beating myself up over not seeing her when I felt prompted to, and asking myself why I wasn't more compassionate and thinking about it from her perspective--of course she'd want to see me. Why didn't I make an effort to go the following week when I would have had enough stamina? Why was I selfish and inconsiderate towards her?

It's been hard to remember my mindset at the time, but today I realized part of this was leaning towards internalized ableism.

I told myself that if I visited, I wouldn't be able to have a conversation. I'd just go and sit there quietly and then have to leave in 10 minutes because of my orthostatic intolerance. I think I thought that it wouldn't be meaningful, it would just be a quick hello and why go for that. But of course, seeing me in the flesh would have brought comfort and touched her heart that I went at all. I guess I was just thinking what's the point...without considering the emotional impact because of my personal value to my mom.

Not seeing her when she was sick and trying to get better, missing the last opportunity I had to be with her, has been devastating and has absolutely ripped my heart out. She was more than my mother--she played a vital role in my life with chronic illness. She witnessed me. No one else notices when I'm feeling worse or not doing well. Mom was the only one, as my dad doesn't pick up on things like she did and isn't nearly as observant or concerned as she was. Mom could tell if I was emotionally down, or would ask how I was feeling health wise when I would be in a slump. She was always asking Dad to come check on me when she sensed something was off. She'd bring me flowers back from the grocery store because she knew it would cheer me up. Losing that is so hard because I already feel invisible in the world. But I never was to her. And I was always on her mind. No one else cares for me like that. And so to still be in my health crisis and lose her and her concerned nature is just a next level loss for my small world and support system. And I didn't realize how big of a pillar she wasn't until it was taken away.

My mom and I had a rough relationship this past year as my health worsened and so did hers. It made for a lot of friction between us, and so a chance to have had a good memory together one last time would have been absolutely huge for me right now as I'm processing this loss. I'm completely haunted.

I don't know how to live with the remorse, but I felt like sharing here because I don't know if anyone else has a similar story. But I know generally this is the one place that people would be able to grasp. I'm also trying to understand and process the role my chronic illness has played in this and to try and have more self compassion for that, and recognize things like this--where I possibly had subconscious patterns and ideas forming my actions, too.

TLDR: I’m mostly homebound due to severe chronic illness, and I didn’t visit my mom during her unexpected final weeks of life because I thought I couldn’t have a meaningful visit given my physical limitations. After she died, I’ve been devastated by the regret, realizing I underestimated how much simply seeing me would have meant to her, especially because she was the person who made me feel most seen and cared for through my illness.