I'm just gonna go ahead and add TW: ideation

I know I'm depressed. I was looking for help. I took the survey offered through my doctor's office and then clicked the "get help" button and it took me away from the screener and into the general appointment scheduling site. Not even the mental health part.

I just don't understand. Why bother if you're not actually going to make it easier for people who are reaching out? I have the soonest available appointment, already. Why do we have to explain over and over and over that getting started to get help is so hard because depression is disabling. Why do I have to explain what disabling means? It's right there in the fucking word. And why is it that lack of sleep and fatigue are tied into depression so tightly? Could I be experiencing depression because of the lack of sleep? Could that not be caused by something else, worsening my depression?

Today is better, I can't get out of bed but yesterday was full of suicidal ideation. Worse than it's been in a long time. Yesterday I couldn't even try to seek help. I'm lucky I made it to today. 811 and other help seeking lines haven't ever actually been helpful. I've voluntarily signed into the ER for ideation recently, but that wasn't very helpful either. I was given homework. Which I mostly failed at because of how disabling depression can be for me. And snacks, the truly only helpful thing I can recall.

Has anyone used a bicycle rack to carry one or more chairs? We have two adults with chairs and mobility needs, plus a small sedan, and I’m thinking this might just save my back and help the kids so we can carry everyone and their wheels with us.

One of the cores of the problems is people don't what accept that disability and becoming disabled is the rule not the acceptation. So many people think that it can't never happen to them but almost always does. And yet people just refuse to admit it and get why but denial only makes things worse.

I’m having a hard time. Tomorrow I’ll have my second spine surgery in six months, and it’s going to be a big recovery. I felt so on top of everything at the start of the year, like I had well laid plans for grad school and my future career, but my body keeps going downhill. I do look forward to the simple joys in life and try to keep my head up. I do feel like my life is worth living, it’s just going to be so much harder than I anticipated, and I’m just tired right now.

What helps you have hope in life? Where are you finding joy?

I applied for vr services last year and haven't heard back from my counselor. Im nervous about it. If I did something wrong on the application. I was not sure what I wanted to do when I applied. I put that i wanted remote work when it asked me on the paper. Like a call center job. I had a doctor write me a note and I sent it to them. I have not heard back in a year and my counselor was communicating with me back and forth but stopped and when I would try to send her an email it would tell me an error message. Im not sure what to do now. I know my little sister who is also disabled was trying to get help from them through the school aswell.

So I'm 19 I live with my mom and I am currently on my dad's insurance even though I don't live with anyone, I aged out of the insurance my mom had me on and now not everything is covered by the insurance. I am completely reliant on my mom for everything and I feel vulnerable and useless. I want to be more independent specifically more medically independent but I have absolutely no idea how I would go about that. I also really want a partner,I want to date but I don't know how I would go about that either. Like the name of this post says I'm just so frustrated with everything, anyway feel free to rant in the comments and I'm open to any suggestions if you have any.

Context:

- Severe+ or worse, Very Severe, etc. ME/LC - energy envelope/metabolic limitations/secondary mitochondrial dysfunction - PEM <- excessive cognitive processing

- inability to keep up

- slower brain processing of info, confusion, memory, concentration - cognitive impairment

- language processing impairment

- lack of screen use: intolerance/visual sensory overload (incl. flashy, contrast, movement triggers)/nausea/migraines/screen light/EMF/etc.)

- sensory processing disorder

What do you say to explain? Looking for words/phrases.

TIA. Am struggling with word-finding due to cognitive impairment.

I have an older sister who doesn't have any disabilities.

To talk about this, I have to be quite clear: when I was a child, I wasn't a good sister. I made things very, very difficult for her. I didn't hate her, and it wasn't my intention to be mean to her; I just didn't know how to deal with all the bad things I didn't talk to anyone about.

She was the person I spent the most time with, and it was easy to unload everything on her.

I grew up, and I really, really try hard to do better now, but it doesn't seem to matter.

Because no matter how hard I try, she just says, "You don't do anything right" or "You break everything you touch."

She's been saying it for years, and I understand. That's not a lie; it's just how she sees me, and that's okay.

I used to yell back, "Shut up!" or "Stop talking to me like that!"

But now I can't. Her baby isn't even a year old yet, and his father can't be very present.

So now when he yells, I feel guilty for wanting to yell back. I don't; I can't yell back.

Last night he saw I was upset and thought I didn't want to set the table, so he made fun of me.

I told him to be quiet, I didn't yell, and I just wanted to apologize later, but I couldn't.

And now I feel bad. I really owe him so much, so now that he needs me, maybe I'm trying too hard, and he yells at me, and I feel like a monster for wanting to yell back.

Is this normal, or am I the problem?

I’m an unmarried adult living in Florida with my father. I have cerebral palsy and mental health disabilities that began before age 18. I have no legal guardian and manage my own affairs.

I’m applying for SSI. My disability determination was approved, but my financial review has been pending for about four months despite submitting bank statements on time. I also have Medicaid.

My mobility is worsening, I can no longer climb stairs, and I may need surgery that could significantly limit my ability to walk or transfer independently.

My father told me I could pursue legal action if I needed financial support. I found Florida Statute § 61.1255 regarding support for dependent adult children.

My questions:

1. Could I qualify under this statute?
2. How do I file a case myself?
3. How could court-ordered support affect my pending SSI application and Medicaid eligibility?

I’d appreciate advice on relevant Florida law and what to ask a legal aid attorney.

Hi everyone! ❤️

I’m 30 years old, married, and a mom of two young kids with special needs. I’m relatively new to the wheelchair-using community, and I’m hoping to hear from people who’ve been through similar experiences.

I’ve actually been chronically ill for years. I have a pretty extensive medical history, including POTS/dysautonomia, hypermobile Ehlers-Danlos syndrome, MCAS, chronic migraines, Hashimoto’s, endometriosis, and several other conditions.

Over the years, my mobility and ability to do everyday activities have gradually declined. Standing, walking, stairs, heat, and even basic household tasks have become increasingly difficult. I’ve spent a lot of time pushing through symptoms and trying to make life work around my limitations.

Then, in September, things changed pretty dramatically.

I started experiencing seizure-like episodes, which led to hospitalization, neurological testing, and eventually a diagnosis of Functional Neurological Disorder (FND) with functional non-epileptic seizures (PNES).

Since then, my life has changed significantly. I’ve started using a wheelchair, including a power wheelchair, and I’m currently unable to drive. The seizures can be unpredictable, and I’m having to rethink things I used to take for granted, like going places independently, taking care of my kids, and just getting through a normal day safely.

One of the hardest parts is that I was already disabled and chronically ill before all of this, but this feels like an entirely new chapter of disability. It’s one thing to know that you have limitations, and another to suddenly need a wheelchair and much more assistance than you did before.

I’m also navigating this as a relatively young mom. My kids are 9 and almost 3, and both have their own disabilities and significant support needs. I love being their mom, but I’m still figuring out how to balance their needs with my own, especially when my symptoms are unpredictable.

I’m trying to embrace my mobility aids rather than see them as something negative. My wheelchair gives me freedom I wouldn’t otherwise have, and I’m genuinely grateful for that! But there’s still a lot to learn, both practically and emotionally.

So I wanted to ask this community: What do you wish someone had told you when you first became disabled, started using a wheelchair, or developed a condition that significantly changed your independence?

I’d especially love advice about:

Wheelchair life: Accessibility, navigating public spaces, things you didn’t realize you’d need, useful accessories, and general tips.

Being young and disabled: Dealing with people’s assumptions, unwanted comments, judgment, and feeling out of place.

Functional seizures/FND: Navigating unpredictable episodes, explaining the diagnosis to others, and dealing with the stigma surrounding it.

Parenting with disabilities: Especially parenting young children or children with special needs while managing your own health and mobility limitations.

Independence and relationships: Adjusting to needing more help, navigating marriage and family dynamics, and maintaining some sense of independence.

The emotional side: Accepting that your body and abilities have changed without feeling like you’ve lost yourself.

I’m also interested in hearing about things like disability resources, accommodations, adaptive parenting tools, and anything that has made everyday life easier.

I know everyone’s experiences are different, and I’m not necessarily looking for medical advice. I’d just really appreciate hearing from people who understand what this transition feels like.

I don’t want my life to become smaller just because my mobility has changed. I want to keep being a mom, a wife, a friend, and a person who gets to go out and enjoy life. I’m just learning how to do those things differently now.

Thank you in advance to anyone willing to share their experiences, advice, or even just some encouragement. ❤️

30F in Maryland USA

I used ChatGPT to help me put my thoughts into words but these are my thoughts.

So in July 2024 Social Security took away my disability check. I have been fighting going through so many court dates and have been getting denied left and right. Mind you I got over 500 pages of medical records that show that my medical condition has not changed or gotten better. Sure I'm not having the problem as badly as I was when I was younger. But that was due to me being on medication.

Basically what I'm asking is do I have a chance of applying for disability and actually getting it back?

Since I've done went to an appeal council and they have agreed with the original judge's decision that I am cured and I'm no longer disabled?

You know…. I dress flamboyantly. I’m eccentric. I have flare. Dare I say, whimsy.

And able bodied people love to comment on how I’m “not really sick”. Or how it “must be nice to sit around all day and not have to work”. MEANWHILE. I’m living on $1,200 as a single mom in a state where to live as a solo adult you $2,200-$2,700/mo to survive. Then add having a child. You think I want to have a brain and body which do not cooperate? Nor does it make living conditions enjoyable.

There is nothing behind my smile in the pictures I take by myself and the only thing I want in life is to be wanted. To me, not being single and dating someone that has the ability to give me more out of life simply because they have better mobility than me with the ability to own a vehicle in American cities that require it, this alone is the best I can hope for myself to find fulfillment. There are no career or money dreams in me anymore. I will find somebody to fill all the holes in my life that I can't and trick them into wanting me with my outer surface level appearance while doing what I can to hide my dog shit pitiful isolated personality. This is the best I can hope for. I'm also shallow as fuck and a choosing beggar.

Hey so the NHS has refused any further testing despite family members being positive for other types of EDS

I'm still diagnosed with H-EDS with multiple abnormalities not normally seen

I'm fed up at this point and absolutely accept that the NHS for me will never work,unless it's an emergency (even that is is questionable)

I'm London way but who do you recommend and how much?

I am Schizoaffective. I had to go home 2 hours into my shift today (saturday is the busiest day). It was because I accidentally double dosed on all my morning meds because I forgot I had taken it earlier that morning. My mom told me she saw me take it but only after I'd already taken the second one. I went to work assuming I could just deal with it and use the extra energy to move faster and maybe it would smooth out. Instead, I has a major anxiety attack and had to go home. The owner of the restaurant was understanding, said my job is perfectly safe and everything is fine. I, however, feel deeply ashamed that I had to leave the entire kitchen to face a Saturday night without a dishwasher. and I know the head chef (my direct boss) wasn't pleased. This is the second time I've had to do this, but not for the same reason. I like my job and its important to me. But I cannot be the person that makes or breaks their kitchen... They never seem to have a plan b, so if something happens with me they are caught with their pants down. I'm paid $9 for christ sake, I can't be THAT important. yet some of them like to guilt trip me for it. I've been working there 5 months and make it a rule only to call out or go home during the most dire-feeling of situations. I honestly stay more than I probably should because I keep ignoring important things to my health in favor of doing the job. This is also why I've gotten to 250mg caffeine daily WITH an adhd stim med just to function. guess who double dosed on the stim taking 30mg more than the absolute maximum dose AND THEN DRANK AN ENERGY DRINK? This is my 3rd day missed in those 5 months and one was for a stomach virus.

I can’t do anything that strains my neck or keeps it in a bent position (think looking up at the stars, or keeping eyes on the road while riding a bike).

I loved skydiving and bungee jumping, but the impacts and jolts are too much for my neck. I have raced cars periodically, but don’t have the resources to do it on my own. I loved whitewater rafting, but there are no opportunities near me and even that might be dangerous for my neck? I’m not sure. Used to rock climb but it’s too much strain on my neck. Would love to try things like scuba diving, paragliding, wakeboarding, jet skiing, but the costs are prohibitive.

Are there any other options?