To struggle to believe this person is being left routinely passing out and unconscious for hours?

[frequentlybaffuckled]

Put it all in to not drip feed.

They do apparently often have Bradycardia. They also clearly are disabled. They have been around medical care and hospitals a lot, and clearly have both health and general anxiety. They eat poorly and self care and MH are not good.
Visibly drained, pale, thin, unwell, low energy, unable to walk without aids.
I feel bad for questioning them at all.

Their life has fallen apart and it's clear general professionals around them aren't really doing a lot partly because the person makes it hard work.

I've been doing lots to get them out of the mess, into better situations and it's been working. Practicality wise we're almost over a huge life changing line.

I'm now hitting a wall both with my own pissed off suspicions that they may feel weak, wobbly and sleep a great deal but are capable of being woken by an alarm, rather than be, literally, as they claim, suddenly collapsing without warning, (always in a bed or chair, never in a public place or in front of friends) at any time, and being literally unconscious for hours.

And, with the fact that is now being used as a reason to not to turn up to important appointments or agreed times to do things for them that they have asked for, which messes up my life.

They are outraged at me proposing they still have to take responsibility and practical answers: IE Wont lend me a shed key so a delivery can happen regardless. But insistent they may be unconscious and expect the delivery driver to return as many times as it takes, and me to come to help, for them to get their goods. (made up example close to realities)
Or I arrive with someone and materials to do a hard five hour job (free) and they aren't there because 'They where unconscious' for the first three hours, so I'll 'have to do a little and come back another day.'
They are claiming this is their disability and I need to recognize I'm discriminating against them if I don't accept it and work around this not yet diagnosed awful condition. They rarely even say sorry. 'As it isn't their fault.'

They have said their conditions are complex and have mentioned neurological, complex, bradycardia, ELS, and it's been confirmed they have over 20 diagnoses. (I question how many might be non serious type)

Would Dr's really be leaving someone living alone, collapsing all over the place and literally unconscious for hours? (they are 'difficult' and the sort of person wards seem very keen not to keep)

Or am I being an ignorant rotten ablest bitch here and need to listen to them and believe and center them?

I was in an accident and use a wheelchair as a result.

(to be very clear that I have obvious physical disabilities that are clear both to anyone looking and to scans)

yes, as a result I have nerve damage and neurological issues.

I do collapse (have done so in public relatively frequently) and then need to sleep it off.

I cannot comment on your friend but in my case this is a known issue from my neurological problems.

Sorry second post - I do work around it as much as possible. I have a box for parcels and the delivery people know it’s ok to put them in my back garden

I have a key safe for my cleaner

They are outraged at me proposing they still have to take responsibility and practical answers: IE Wont lend me a shed key so a delivery can happen regardless. But insistent they may be unconscious and expect the delivery driver to return as many times as it takes, and me to come to help,

This is the bit that makes the person you are dealing with seem clearly unreasonable. Everyone has to take some responsibility, even though the nature of their responsibilities varies according to their limitations. I get the impression that this person thrives on being validated, and that, for her, nothing will count as validation if it falls short of completely endorsing whatever practical support she is calling for.

And I share your suspicion that falling unconscious (rather than, say, being very tired and perhaps also struggling with a depressive inertia) isn't actually what is happening to her.

I think it would be very reasonable if you were to state some clear boundaries and say that your continuing help is dependent oh her respecting them.

Who is this, OP?

Who knows with the way health care is these days.

Maybe you need to be firm on what you will and won't do and not let them rule you.

What is your responsibility towards this person? I don’t really think you need to over analyse their condition, you need to be deciding on your own reasonable limits which has nothing to do with their condition and everything to do with your own physical, mental and emotional capacity.

Sleep it off or you're unconscious? Op says this person says they're literally unconscious which is not the same as sleeping.

Let's all believe ops understanding of disability shall we? And her accurate reporting. And timely disability bashing post.

Why are you so involved? Why do you care?

I don’t mean it callously, but I don’t understand why you are so tied up with helping them and that might inform answers.

FWIW the person sounds manipulative.

I have epileptic type fits which aren’t epilepsy.

while they are lasting I’m unconscious (mostly although occasionally not). Afterwards I need to rest and sleep it off.

obviously I don’t know about this person but non epileptic seizures (the medics do love a snappy name) is one of the possibilities.

in my case they are believed to have been triggered by my accident.

I don't think whether or not this person is being entirely honest is actually entirely relevant (although I do get it - it does seem to be a bit casual? what if they're cooking and they've collapsed? shouldn't they/health care professionals be worried about burning the house down? Or similar).

What's more important is that they're in a situation where whether o rnot they have legitimate health issues, they are not being appreciative or respectful of your time and efforts.

The shed key one is a good example. If someone is routinely unconscious (genuinely) or sleeping due to illness, either way, it's not a big ask to say that if you are routinely deliering things there needs to be a solution for delivering those things even if the person is unwell.

Well they may or may not be collapsing and unconscious for hours and it is strange that it never seems to be in a public place. But either way, they must take some responsibility/initiative around their disability. They can't expect you to turn up and sort their life out without the tools to do so. That's untenable. So you must have a conversation with them, telling them just that.

@Octavia64 Why I don't want to assume, but find it odd that someone who's life was so compromised wouldn't welcome ways round it...

@MyThreeWords yes to validation mattering, but it's more than that it's everyone expected to just accept the results of this in as unemotional and unquestioning way as not expecting someone in a wheelchair to do stairs.

@BiteSizeByzantine This is absolutely NOT a disability bashing post. I am disabled, and completely torn apart trying to do the right thing for someone in an even worse boat and unsure if I'm being a fool. They are clearly disabled and unwell. I just don't know if I'm being unreasonable to not be accepting just how precarious their situation is

@MagicUser1 You've got it. I'm worried I'm casually accepting 'nothing can be done' about dangerous situations, and the 'delivery' example is actually much more important things that will in the end potentially leave them with nothing, which is why I'm struggling to hold boundaries.

@Octavia64 this was the sort of thing I was assuming in the beginning but I would have thought those relatively common things would be checked for or are we really so bad now that someone could go years without?

I'd be shocked if medical professionals thought it was ok for someone to be unconscious (not asleep) for hours at a time, home alone. Is this really actually happening? If it is that's awful, but surely not surprising (as it's frankly so terrible) that people would struggle to beleive it.

not sure what you mean about ops timely post?

Yes things are so bad now that people who don't strongly advocate for themselves can be left unchecked and unsupported.

I’m afraid that things are indeed quite bad now, but really that’s all the more reason why helpers like you would need a key for access, for example.

But please don’t take on more than you can manage. You can let social care know yourself that it’s not sustainable.

Thank you. I don't want to be a callous ablest bitch, and fear I may be being one, or being an absolute patsy, but it's all reached a point where I need to ask others.

Thanks for explaining.

Unless you have sole responsibility for this person, it sounds like you need to stop doing so much for them if they won’t be cooperative. Don’t arrange any more help or deliveries for them unless they give you a key.

You will need to emphasise your own limitations- unfortunately some people need a round of one-up-man-ship before they’ll settle. You need to be pretty brusque and make it clear there’s no room for negotiation.

So
“I will come and help with that job on Saturday. If we don’t get it finished that day, you will need to find someone else.”
”I can only come Saturday. I have medical appointments and work in the week, and Sunday I have to stick to my schedule so I am ready for the week ahead. With [disability] it’s important to have a regular routine so that I can manage my symptoms as well as I can]. No I won’t be able to come the week after.”

You can’t take on responsibility for someone who won’t take responsibility themselves.

Things can only be checked if the person in questions attends a GP appointment with this specific issue. You wouldn't believe how many people I work with who have a list of symptoms as long as their arm but never got a chance to report half of them to the GP. So this person may have been to their doctors weekly talking, say, about their pain and never once mentioning that they pass out on a regular basis.

Surely it’s not discrimination if this is you helping out a friend? You are entitled to boundaries that ensure you keep your own physical and mental health intact. That includes you just not wanting to do something because plans have changed and it doesn’t suit you to rearrange for whatever reason (even if the other person thinks that you’re doing nothing so why shouldn’t you help).

If you are employed by this person then it’s different as employment laws and discrimination laws would apply.

I’m disabled.

following my accident I spend a lot of time going to various disability support groups. As a result I know a lot of disabled people.

epilepsy cannot always be controlled by drugs. People who are epileptic are often advised not to cook or bath on their own particularly if they have uncontrolled fits, and their driving license will be taken away. Not everyone with epilepsy lives with someone, and you won’t get taken into care for having epilepsy - your care needs have to be a lot higher.

generally it’s advised to get medically checked out in a and e on a first fit or if it lasts longer than ten minutes.

then there’s people like me who have non epileptic seizures, there’s no drugs to help with those, the medics think mine are due to the accident I was in. They don’t want you in hospital for those because there’s nothing they can do.

most people who have a disability do try to work around it (eg my deliveries go behind my bins and I have a key safe for my cleaner) but ultimately some people are difficult and some disabled people are difficult.

@concertinacornflake @DappledGoldenCrow this is my concern.
I'm shocked at key workers letting them fall from bad to worse. (though I'm finding out why maybe now)

Everytime I draw a hard line, the people who should pick up consequences don't and just help that person downwards to more debt with less options and quality of life.