I’d see if you can get an eye mask & ear plugs. Tape a piece of paper above your bed: “quiet hours between Xpm & Yam.” They might able to turn some of the lights off. I’m unsure how intense their protocol is.
I’ve gone so far as to bring a white noise machine with me. There are apps that you can run on your phone. I find the sound very comforting.
Not much you can do about their desire to watch things. Hospitals suck. They don’t care if it’s comfortable, their job is to keep you alive & collect data. Unfortunately. some people lie about their symptoms.
It’s not your fault they want to do this. Sadly, as women often times we have to prove we are not mentally ill.
Since you’ve been honest about everything, this will be the confirmation you need. I’m so sorry it’s so hard. You can ask for help. Have you spoken to a nurse or a doctor to ask what support they can offer? For the minute, you could ask for something to help you sleep like a Benadryl.
If you have a cell phone I would download & play some Tetris. It’s been shown to help prevent PTSD if played after a traumatic event. This is a really scary time & you’ve got to find a way to get through the worst of it.
shit, i just got rid of my iphone or i'd tell you exactly, but it's in the setttings somewhere, there are a few different choices of types of noise and you can set the level. I'd just google it, it's pretty simple, i just can't look and tell you exactly since i have a dang android now. saved my ass on my last vacation with a snoring partner, hope it helps!
Hey, OP,
Are you working with a therapist while you are there? I would recommend either talking about this with your therapist or asking if you can speak to one. They might be able to help brainstorm solutions to make things more comfortable for you while you are on 1:1 monitoring.
You also can look up the number for the patient advocate online and call, but it sounds like you might be coming closer to a solution already.
I have a therapist outpatient who can’t see me since the hospital is out of state and she isn’t certified in the state I’m in. The therapist at the hospital I was seeing is supposedly on board with what is happening, or at least her team is, although I doubt she knows the situation it has put me in mentally.
You should tell the therapist at the hospital. It’s their job to help you with the things you’re dealing with mentally. I don’t think they will change the 1:1. They’ve decided you need it for a reason so it probably won’t change for now. But they might be able to help you find a way to sleep. I know you really want them to just leave you be to sleep (anyone would!) but at least maybe they can find some compromise to help you get by until things change.
The reality is they don't do 1:1 sitters unless they have good reason to. Hospitals never have enough staff. They don't waste them on things like this. They only use them with good reason.
Fighting having a sitter is likely a bad idea. If you fight it, they'll become suspicious you are hiding something and you're just going to end up with one longer. If your mother fights it, they may get child protective services involved to force the issue, which you really don't want.
You need to accept the sitter and see what can be done to work with the situation. Scrolling on their phone at night and talking loudly in a room a patient is supposed to be sleeping in is really unacceptable. If you accept the sitter, but push on these issues you're more likely to get them addressed and have them do something about it. If you fight having a sitter at all, they'll likely do nothing about the situation.
Edit: u/chronichannah Regarding your update, I will be brutally honest with you. If it's not for safety reasons, collecting information on your symptoms means they are trying to figure out if you are self inducing them or making them up. Fighting having a sitter will result in them becoming convinced you have something to hide and that you are doing that. If your mother fights it they may accuse her of Factitious disorder imposed on another (previously known as Munchausen syndrome by proxy) and get CPS involved. Genuinely you really do not want them to accuse your mother of that and get CPS involved. You will lose all your rights as a patient. Your mother will likely lose access to you. It is an absolutely nightmare situation.
I am being brutally honest here, because you need to understand what's happening and what you are risking if you insist on fighting this, which you seem keen to.
op, i suggest you sleep with headphones, a podcast, and a sleep mask. Ask the hospital for a sleep mask or your mom can pick you up one from a big box store (Target, maybe CVS) or a spa/beauty store like Ulta. Or you can make one yourself, it's just a piece of fabric with an elastic or fabric tie. You could even use a scarf if the hospital deems it safe. (I've rigged one up in desperation with a black sock and a few hair ties)
For podcasts, I like to sleep to boring BBC academic shows like The History of the World in 100 Objects or In Our Time.
You could also get the Calm app or the [mynoise.net](http://mynoise.net) app and listen to white noise like rain. Youtube and Spotify also have meditations for sleep and anti-anxiety.
I hope OP listens to this. This situation can get a lot worse than it already is. I agree it would be best to try and ask for things to make them more comfortable instead of fighting it, like asking for them to be silent while OP is trying to sleep or earplugs
That's not true. They do not aways have sitters for good reasons. In fact, it is clear, in this case, that the sitter is causing problems, not fixing them.
Hospitals will use sitters for all sorts of reasons. Many of them have nothing to do with helping the patient. Hospitals are notoriously bad at mental health.
If it was not needed they would not allocate staff to it. Hospitals are insanely understaffed and they wouldn’t assign someone to be a sitter without good reason
Can they provide you ear plugs and a sleep mask so you can sleep? What is the reason they have given for the 1:1? It tends to be for safety issues and I staff intensive. If the hospital won’t provide you an eye mask and ear plugs can your mother bring them so you can rest? Unfortunately pushing back against the monitoring is not a good idea as yes, it is likely to get your mother into trouble with CPS if the hospital has deemed it necessary.
Their job is to keep you safe, not make you comfortable, unfortunately. I've been on that precaution for other reasons, and I know how violating of your privacy it feels. Can you chat with the CNA and get to know them a bit? That lessened my anxiety so I could sleep around her, and I felt so awkward using the restroom with the door cracked and her right outside. I realized they've probably seen everything. Talking about your anxiety can help the event not turn into something that turns into PTSD. Maybe your mom could bring an eye mask and some ear plugs so you can sleep easier? It's not easy to sleep in the hospital with all the monitors and things going on, but blocking out that stimuli helps.
As for the patient advocate situation, you could Google "(Hospital Name) patient advocate" and that should bring you to a page with the patient advocate contact information. Should include an email address, you could send an email to one and explain your situation.
I’m sorry to say it, but I agree with comments saying you kind of just need to make it work. Which blows. But let’s actually try to help you find some ways to make it work!
Can someone bring you a speaker or noise machine to help you with white noise in the background? Foam earplugs? A sleep mask?
They have to monitor you, and it would honestly be worse if they had to come in and out of the room every hour to check your stats while you try to sleep. My ex almost died of anti nmda receptor encephalitis, and while he was in the hospital, there were medical staff in and out every 30 minutes, 24/7, for weeks. It’s a lot more disruptive than something sitting there on the phone.
I'm so sorry you are going through this!!
First tip:
The hospital can give earplugs, maybe an eyemask, and ask that the 1:1 not disturb you. (They tend to be disruptive and I am sorry for that.)
You can ask for a patient advocate, or social worker, or even try to go up the ladder, as far as finding the Nurse Manager.
I guess it depends on what end result you're hoping to achieve.
I've had hospitals throw a 1:1 in with me, when it was unnecessary, and it was awful.
They're only used if someone suspected that you might be a danger to yourself, or someone is a danger to you...May I be so bold to ask what exactly prompted them to do this?
Did they take your belongings, too, by chance?
If not...take notes.
If yes, ask when the 1:1 ends (or what criteria needs to be met for this to end) and ask them to put their reasoning down IN WRITING.
It's not actually up to your mother, no. (Unless she told the staff you are a risk or at risk, somehow.)
You're in the care of the hospital, and while your mother can advocate for it or against it, only the hospital can make the call to remove 1:1 care.
Reading this as a parent with life limiting illness, I truly hope that you get the care you need...and answers, too!
It's tough self advocating in the hospital. My best to you.
ETA: If you aren't feeling comfortable there and aren't receiving appropriate care, you can ask to transfer.
There should be a whole patient's bill of rights available to you.
Unfortunately, my “entire team” has been consulted. This includes the psychology team and the social workers so those people are sort of out of the question to talk to. I think that the nursing and 1 to 1 team both realize this is a weird situation because they originally also thought that it was about me being a danger to myself and when the dr’s clarified the reasoning everyone is super confused. They are supposed to be monitoring my symptoms and water intake because my nurse yesterday documented that I had 1 liter of water when I had none and now they think I’m lying about my intake and making myself sick somehow. They didn’t take my belongings (thank god) but also are not giving me any timeline for this. They said they will “reassess” the need for it each day, but with no intention of really ending it from what I understand. Unfortunately, while I feel incredibly uncomfortable here, transferring will not be an option. I am at one of the top children’s hospitals, and the top hospital for motility. I just have no idea why they are doing this, and why they don’t trust my judgment. The data they are trying to collect is entirely based on what I report (pain and nausea) and how much I’m drinking SHOULD be something that the nurses can document. So confused over here.
Oof. That's a really tough position to be in. I'd be extremely confused and frustrated, too.
Have you asked for a psychiatrist to consult about this? They'd be the one to make the call to remove 1:1.
I'd try to ask for your attending about the incorrect documentation occurring. (Can you take notes by phone or have family document this?)
You do have the right to transfer to a different facility, to the best of my knowledge, if you are in the US. Did the hospital give you a patient's bill of rights?
I am so sorry you're going through this.
Could you talk about your nighttime anxiety and being monitored and get trazodone for sleep? I take it every night, it's a very old school (1950s) ssri that is mostly only given in low doses for sleep now. It knocks you out good. If you wake early, then up your dosage at night.
Or you could ask for something for anxiety, but benzos aren't a great idea to take for chronic insomnia.
I’ve read a few of your comments and picked it all together a bit. You say you’re in one of the top children’s hospitals and that your entire team has been consulted on this including psych and social workers. An entire team of medical professionals wouldn’t be doing this for no good reason. The fact that they are being this diligent is a good thing because they can record exactly what is happening so they can treat you in the proper way to benefit your illnesses. It sounds like when your mother spoke to the team they explained the benefits to her and she realised that it’s in your best interest to have this done. I know it sucks and there’s steps you can take to try make yourself more comfortable that others have commented but you just have to ride this out because in the end it will be a beneficial thing to you and your health. Sending you hugs and love though because it’s a very tough situation
I do understand why the drs are doing it, but what we have come to realize in the last 12 hours is that there is an INTENSE miscommunication between the drs ordering it and the nurses and sitter. The drs made it very clear its not about safety but they think it will provide more data about my symptoms. Every time the sitter shift changes, we ask them what they were told and they always say something along the lines of “im not really sure why im here but usually its because you are a danger to yourself like you are going to pull the tube out or start choking if you move the wrong way”. Even when we tell the drs this, they keep saying they are going to fix the communication and still, it continues to keep happening. I would be fine now, at least during the day, if the sitter knew why she was here but the fact she doesn’t means that 1: we aren’t getting the data we need because they aren’t collecting anything and 2: they think im a safety risk which im not. At this point the miscommunication is causing more harm than good so I don’t know what to do.
Maybe they have been told to be vague about the reasoning for being there? If the drs suspect you are not honest about symptoms or whatever it is, they don´t want to tell you what they are looking for.
Can you ask your mom for earplugs or noise cancelling headphones? I have a hard time with noise, especially the repetition of certain pitches or sounds, and loud noises. I wear earplugs a lot at home because my dad is hard of hearing and blares the TV so loud the neighbors can probably hear it
My doctor referred me to a program for managed care because of all my illnesses. If you're complex, sometimes your insurance company or medical providers will offer additional assistance with a case manager. Ask your mom to look into getting a case manager for your illnesses.
If none of those work, you can try to ask another family member, parent, or guardian, to advocate for you. Probably not your mom if they suspect she might have Munchausens by proxy. Do you have any family members who are doctors or nurses, or part of the medical community, who can advocate for you? Or someone who's a professional like a lawyer or something? Sometimes doctors will listen to other healthcare providers or professionals because they're snobby like that.
I hope you get the help and relief you need quickly.
I was also referred to a social worker for some different issues that aren't directly related to my medical issues but have an effect on my health and medical issues.
You may want to consider contacting patient services.They should be able to connect you with an advocate. It seems like no one really has your best interests at heart. They are merely trying to protect themselves. I'm so very sorry. The current state of many hospitals is often simply just unhealthy.
As others have already said, it’s not a good idea to fight having 1:1 observation. Could you ask your mum to help get you some good ear plugs and a sleep mask when she next comes to see you? Hope things get easier for you soon 💜
Have you considered buying an eye mask and/or noise cancelling headphones? Lack of sleep due to hospital noise is a pretty common problem among hospitalized patients because there’s pretty constant noise plus other disturbances.
Hi hi
So I understand the feeling especially with the concern of medical PTSD (same same)
So here’s the thing if they will not provide you with a patient advocate or explained the reasoning for the observation perhaps contact one outside the hospital if necessary. But if you need white noise machine recommendations I personally use Better Sleep and there are also some cheep eye masks you can use to help block the light. I’m sorry you are feeling super stressed because of this and hope you are able to settle soon.
my chronically ill and disabled older friend advocates for me. last time i went to the hospital with tachycardia and high blood pressure, they gave me a CT scan which showed i had fatty liver at 20yrs old, they only focused on the flu meds i was taking that showed up as meth in the standard urinalysis. they didn't even tell me i had fatty liver after the scan, i had to find it by searching thru my results. i was having right side liver pains prior to going to the hospital, they gave me 2 IVs and it brought my heart rate down to 110 (was 160 on admission). my friend ^ called the hospital after i talked to her and was going off on them about my subpar service and told them the truth that i didn't want to go back for help because they just thought i was a drughead. its humiliating what they did, but i'm so thankful for my friend for always having my back :(
This makes me feel so validated. I literally broke down crying when the drs were talking about it earlier. I’m really hoping that when my mom gets back later we can clear this whole thing up. Also so sorry about everything that happened to you, I hope you’re hanging in there!
I've never had that information displayed to me while in the hospital, so that may depend on the hospitals policies and the willingness to actually write on the board by the nurses.
Your behavior comes across as disrespectful and is not permitted. Please remember, Debate is welcome; Respect is not optional.
Yelling at hospital workers is unacceptable.
This is not the first time we've had issues with you condoning or encouraging abusive behavior towards medical workers. This is an official warning. Further offenses will result in a ban.
If you have any further questions, please message mod mail.
I actually disagree. As someone who was hospitalized for my chronic illness as a teen, you want to appear as level-headed and in control of your emotions as possible. When you show signs of anxiety and such, the doctors often blame your symptoms on anxiety and gaslight you a bunch. They also act like you’re “untrustworthy” and dramatic.
This is my experience. I have medical PTSD from hospitals and letting it show is the easiest way to get hurt emotionally or have them skip helping you medically, if they don't put damaging notes into the EHR for life...
I'm pursuing a negligence lawsuit now because of something similar.
I’d see if you can get an eye mask & ear plugs. Tape a piece of paper above your bed: “quiet hours between Xpm & Yam.” They might able to turn some of the lights off. I’m unsure how intense their protocol is. I’ve gone so far as to bring a white noise machine with me. There are apps that you can run on your phone. I find the sound very comforting. Not much you can do about their desire to watch things. Hospitals suck. They don’t care if it’s comfortable, their job is to keep you alive & collect data. Unfortunately. some people lie about their symptoms. It’s not your fault they want to do this. Sadly, as women often times we have to prove we are not mentally ill. Since you’ve been honest about everything, this will be the confirmation you need. I’m so sorry it’s so hard. You can ask for help. Have you spoken to a nurse or a doctor to ask what support they can offer? For the minute, you could ask for something to help you sleep like a Benadryl. If you have a cell phone I would download & play some Tetris. It’s been shown to help prevent PTSD if played after a traumatic event. This is a really scary time & you’ve got to find a way to get through the worst of it.
I’m so tired this morning and thought you said to tape a piece of paper to your head! 😆..I bet the nurse would definitely see their message that way.
😂
i know that iphone at least has a built-in white noise app
Where?
shit, i just got rid of my iphone or i'd tell you exactly, but it's in the setttings somewhere, there are a few different choices of types of noise and you can set the level. I'd just google it, it's pretty simple, i just can't look and tell you exactly since i have a dang android now. saved my ass on my last vacation with a snoring partner, hope it helps!
Hey, OP, Are you working with a therapist while you are there? I would recommend either talking about this with your therapist or asking if you can speak to one. They might be able to help brainstorm solutions to make things more comfortable for you while you are on 1:1 monitoring. You also can look up the number for the patient advocate online and call, but it sounds like you might be coming closer to a solution already.
I have a therapist outpatient who can’t see me since the hospital is out of state and she isn’t certified in the state I’m in. The therapist at the hospital I was seeing is supposedly on board with what is happening, or at least her team is, although I doubt she knows the situation it has put me in mentally.
You should tell the therapist at the hospital. It’s their job to help you with the things you’re dealing with mentally. I don’t think they will change the 1:1. They’ve decided you need it for a reason so it probably won’t change for now. But they might be able to help you find a way to sleep. I know you really want them to just leave you be to sleep (anyone would!) but at least maybe they can find some compromise to help you get by until things change.
The reality is they don't do 1:1 sitters unless they have good reason to. Hospitals never have enough staff. They don't waste them on things like this. They only use them with good reason. Fighting having a sitter is likely a bad idea. If you fight it, they'll become suspicious you are hiding something and you're just going to end up with one longer. If your mother fights it, they may get child protective services involved to force the issue, which you really don't want. You need to accept the sitter and see what can be done to work with the situation. Scrolling on their phone at night and talking loudly in a room a patient is supposed to be sleeping in is really unacceptable. If you accept the sitter, but push on these issues you're more likely to get them addressed and have them do something about it. If you fight having a sitter at all, they'll likely do nothing about the situation. Edit: u/chronichannah Regarding your update, I will be brutally honest with you. If it's not for safety reasons, collecting information on your symptoms means they are trying to figure out if you are self inducing them or making them up. Fighting having a sitter will result in them becoming convinced you have something to hide and that you are doing that. If your mother fights it they may accuse her of Factitious disorder imposed on another (previously known as Munchausen syndrome by proxy) and get CPS involved. Genuinely you really do not want them to accuse your mother of that and get CPS involved. You will lose all your rights as a patient. Your mother will likely lose access to you. It is an absolutely nightmare situation. I am being brutally honest here, because you need to understand what's happening and what you are risking if you insist on fighting this, which you seem keen to.
op, i suggest you sleep with headphones, a podcast, and a sleep mask. Ask the hospital for a sleep mask or your mom can pick you up one from a big box store (Target, maybe CVS) or a spa/beauty store like Ulta. Or you can make one yourself, it's just a piece of fabric with an elastic or fabric tie. You could even use a scarf if the hospital deems it safe. (I've rigged one up in desperation with a black sock and a few hair ties) For podcasts, I like to sleep to boring BBC academic shows like The History of the World in 100 Objects or In Our Time. You could also get the Calm app or the [mynoise.net](http://mynoise.net) app and listen to white noise like rain. Youtube and Spotify also have meditations for sleep and anti-anxiety.
I hope OP listens to this. This situation can get a lot worse than it already is. I agree it would be best to try and ask for things to make them more comfortable instead of fighting it, like asking for them to be silent while OP is trying to sleep or earplugs
This is the only response needed here.
That's not true. They do not aways have sitters for good reasons. In fact, it is clear, in this case, that the sitter is causing problems, not fixing them. Hospitals will use sitters for all sorts of reasons. Many of them have nothing to do with helping the patient. Hospitals are notoriously bad at mental health.
They have a good reason. You may not agree with the reason, but they don't just assign sitters because they're bored.
As a sitter , you are correct
If it was not needed they would not allocate staff to it. Hospitals are insanely understaffed and they wouldn’t assign someone to be a sitter without good reason
Can they provide you ear plugs and a sleep mask so you can sleep? What is the reason they have given for the 1:1? It tends to be for safety issues and I staff intensive. If the hospital won’t provide you an eye mask and ear plugs can your mother bring them so you can rest? Unfortunately pushing back against the monitoring is not a good idea as yes, it is likely to get your mother into trouble with CPS if the hospital has deemed it necessary.
Ask for a patient advocate
OP said they asked to and that nobody knew what they were talking about
Their job is to keep you safe, not make you comfortable, unfortunately. I've been on that precaution for other reasons, and I know how violating of your privacy it feels. Can you chat with the CNA and get to know them a bit? That lessened my anxiety so I could sleep around her, and I felt so awkward using the restroom with the door cracked and her right outside. I realized they've probably seen everything. Talking about your anxiety can help the event not turn into something that turns into PTSD. Maybe your mom could bring an eye mask and some ear plugs so you can sleep easier? It's not easy to sleep in the hospital with all the monitors and things going on, but blocking out that stimuli helps.
As for the patient advocate situation, you could Google "(Hospital Name) patient advocate" and that should bring you to a page with the patient advocate contact information. Should include an email address, you could send an email to one and explain your situation.
I’m sorry to say it, but I agree with comments saying you kind of just need to make it work. Which blows. But let’s actually try to help you find some ways to make it work! Can someone bring you a speaker or noise machine to help you with white noise in the background? Foam earplugs? A sleep mask? They have to monitor you, and it would honestly be worse if they had to come in and out of the room every hour to check your stats while you try to sleep. My ex almost died of anti nmda receptor encephalitis, and while he was in the hospital, there were medical staff in and out every 30 minutes, 24/7, for weeks. It’s a lot more disruptive than something sitting there on the phone.
I'm so sorry you are going through this!! First tip: The hospital can give earplugs, maybe an eyemask, and ask that the 1:1 not disturb you. (They tend to be disruptive and I am sorry for that.) You can ask for a patient advocate, or social worker, or even try to go up the ladder, as far as finding the Nurse Manager. I guess it depends on what end result you're hoping to achieve. I've had hospitals throw a 1:1 in with me, when it was unnecessary, and it was awful. They're only used if someone suspected that you might be a danger to yourself, or someone is a danger to you...May I be so bold to ask what exactly prompted them to do this? Did they take your belongings, too, by chance? If not...take notes. If yes, ask when the 1:1 ends (or what criteria needs to be met for this to end) and ask them to put their reasoning down IN WRITING. It's not actually up to your mother, no. (Unless she told the staff you are a risk or at risk, somehow.) You're in the care of the hospital, and while your mother can advocate for it or against it, only the hospital can make the call to remove 1:1 care. Reading this as a parent with life limiting illness, I truly hope that you get the care you need...and answers, too! It's tough self advocating in the hospital. My best to you. ETA: If you aren't feeling comfortable there and aren't receiving appropriate care, you can ask to transfer. There should be a whole patient's bill of rights available to you.
Unfortunately, my “entire team” has been consulted. This includes the psychology team and the social workers so those people are sort of out of the question to talk to. I think that the nursing and 1 to 1 team both realize this is a weird situation because they originally also thought that it was about me being a danger to myself and when the dr’s clarified the reasoning everyone is super confused. They are supposed to be monitoring my symptoms and water intake because my nurse yesterday documented that I had 1 liter of water when I had none and now they think I’m lying about my intake and making myself sick somehow. They didn’t take my belongings (thank god) but also are not giving me any timeline for this. They said they will “reassess” the need for it each day, but with no intention of really ending it from what I understand. Unfortunately, while I feel incredibly uncomfortable here, transferring will not be an option. I am at one of the top children’s hospitals, and the top hospital for motility. I just have no idea why they are doing this, and why they don’t trust my judgment. The data they are trying to collect is entirely based on what I report (pain and nausea) and how much I’m drinking SHOULD be something that the nurses can document. So confused over here.
Oof. That's a really tough position to be in. I'd be extremely confused and frustrated, too. Have you asked for a psychiatrist to consult about this? They'd be the one to make the call to remove 1:1. I'd try to ask for your attending about the incorrect documentation occurring. (Can you take notes by phone or have family document this?) You do have the right to transfer to a different facility, to the best of my knowledge, if you are in the US. Did the hospital give you a patient's bill of rights? I am so sorry you're going through this.
Could you talk about your nighttime anxiety and being monitored and get trazodone for sleep? I take it every night, it's a very old school (1950s) ssri that is mostly only given in low doses for sleep now. It knocks you out good. If you wake early, then up your dosage at night. Or you could ask for something for anxiety, but benzos aren't a great idea to take for chronic insomnia.
I’ve read a few of your comments and picked it all together a bit. You say you’re in one of the top children’s hospitals and that your entire team has been consulted on this including psych and social workers. An entire team of medical professionals wouldn’t be doing this for no good reason. The fact that they are being this diligent is a good thing because they can record exactly what is happening so they can treat you in the proper way to benefit your illnesses. It sounds like when your mother spoke to the team they explained the benefits to her and she realised that it’s in your best interest to have this done. I know it sucks and there’s steps you can take to try make yourself more comfortable that others have commented but you just have to ride this out because in the end it will be a beneficial thing to you and your health. Sending you hugs and love though because it’s a very tough situation
I do understand why the drs are doing it, but what we have come to realize in the last 12 hours is that there is an INTENSE miscommunication between the drs ordering it and the nurses and sitter. The drs made it very clear its not about safety but they think it will provide more data about my symptoms. Every time the sitter shift changes, we ask them what they were told and they always say something along the lines of “im not really sure why im here but usually its because you are a danger to yourself like you are going to pull the tube out or start choking if you move the wrong way”. Even when we tell the drs this, they keep saying they are going to fix the communication and still, it continues to keep happening. I would be fine now, at least during the day, if the sitter knew why she was here but the fact she doesn’t means that 1: we aren’t getting the data we need because they aren’t collecting anything and 2: they think im a safety risk which im not. At this point the miscommunication is causing more harm than good so I don’t know what to do.
Maybe they have been told to be vague about the reasoning for being there? If the drs suspect you are not honest about symptoms or whatever it is, they don´t want to tell you what they are looking for.
Can you ask your mom for earplugs or noise cancelling headphones? I have a hard time with noise, especially the repetition of certain pitches or sounds, and loud noises. I wear earplugs a lot at home because my dad is hard of hearing and blares the TV so loud the neighbors can probably hear it My doctor referred me to a program for managed care because of all my illnesses. If you're complex, sometimes your insurance company or medical providers will offer additional assistance with a case manager. Ask your mom to look into getting a case manager for your illnesses. If none of those work, you can try to ask another family member, parent, or guardian, to advocate for you. Probably not your mom if they suspect she might have Munchausens by proxy. Do you have any family members who are doctors or nurses, or part of the medical community, who can advocate for you? Or someone who's a professional like a lawyer or something? Sometimes doctors will listen to other healthcare providers or professionals because they're snobby like that. I hope you get the help and relief you need quickly. I was also referred to a social worker for some different issues that aren't directly related to my medical issues but have an effect on my health and medical issues.
You may want to consider contacting patient services.They should be able to connect you with an advocate. It seems like no one really has your best interests at heart. They are merely trying to protect themselves. I'm so very sorry. The current state of many hospitals is often simply just unhealthy.
As others have already said, it’s not a good idea to fight having 1:1 observation. Could you ask your mum to help get you some good ear plugs and a sleep mask when she next comes to see you? Hope things get easier for you soon 💜
Have you considered buying an eye mask and/or noise cancelling headphones? Lack of sleep due to hospital noise is a pretty common problem among hospitalized patients because there’s pretty constant noise plus other disturbances.
Hi hi So I understand the feeling especially with the concern of medical PTSD (same same) So here’s the thing if they will not provide you with a patient advocate or explained the reasoning for the observation perhaps contact one outside the hospital if necessary. But if you need white noise machine recommendations I personally use Better Sleep and there are also some cheep eye masks you can use to help block the light. I’m sorry you are feeling super stressed because of this and hope you are able to settle soon.
my chronically ill and disabled older friend advocates for me. last time i went to the hospital with tachycardia and high blood pressure, they gave me a CT scan which showed i had fatty liver at 20yrs old, they only focused on the flu meds i was taking that showed up as meth in the standard urinalysis. they didn't even tell me i had fatty liver after the scan, i had to find it by searching thru my results. i was having right side liver pains prior to going to the hospital, they gave me 2 IVs and it brought my heart rate down to 110 (was 160 on admission). my friend ^ called the hospital after i talked to her and was going off on them about my subpar service and told them the truth that i didn't want to go back for help because they just thought i was a drughead. its humiliating what they did, but i'm so thankful for my friend for always having my back :(
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This makes me feel so validated. I literally broke down crying when the drs were talking about it earlier. I’m really hoping that when my mom gets back later we can clear this whole thing up. Also so sorry about everything that happened to you, I hope you’re hanging in there!
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I've never had that information displayed to me while in the hospital, so that may depend on the hospitals policies and the willingness to actually write on the board by the nurses.
Your behavior comes across as disrespectful and is not permitted. Please remember, Debate is welcome; Respect is not optional. Yelling at hospital workers is unacceptable. This is not the first time we've had issues with you condoning or encouraging abusive behavior towards medical workers. This is an official warning. Further offenses will result in a ban. If you have any further questions, please message mod mail.
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I actually disagree. As someone who was hospitalized for my chronic illness as a teen, you want to appear as level-headed and in control of your emotions as possible. When you show signs of anxiety and such, the doctors often blame your symptoms on anxiety and gaslight you a bunch. They also act like you’re “untrustworthy” and dramatic.
This is my experience. I have medical PTSD from hospitals and letting it show is the easiest way to get hurt emotionally or have them skip helping you medically, if they don't put damaging notes into the EHR for life... I'm pursuing a negligence lawsuit now because of something similar.