My Parents Have Lost Their Minds

[Freaked]

I've been VERY ill lately; can't even sit up cos my pulse pressure goes to about 10 . My parents have decided they don't think POTS is real and I need to be sectioned. They want to phone my cardiologist and tell him i'm just nuts. My BP was 140/130 earlier then 72/62. They took my cuff and phone off me so I wouldn't call help and left me on the ground. I'm 22 btw but too disabled to live alone.

[IceLizard]

I am very sorry you are in such a difficult place. Those BP readings are not normal and even if they were they should be treating you better than that. Low pulse pressure coupled with tachycardia can be an indicator of hypovolemia (low blood volume) which many of us have and is treatable. I am on Florinef for this, but I see it was not successful in your case? Is there anyone else you can live with until they come to their senses (other relatives, friends)? Can you get a phone back? You may need it and they have no right to take it away. My mom was the opposite, she panicked whenever I was sick and said I was going to die.

If they keep mistreating you you may consider calling protective services on them. This is just not right.

[IceLizard]

You may need that phone if you become even more ill and have to go to the hospital or if you need to call your Cardiologist about the BP readings. Do you feel like you are in any danger? Are you being held at home against your will without means of communication or leaving? Please explain the situation more. I will call protective services or the police for you if you ask me to.

[Katybug]

I agree with IceLizard. If you are not receiving proper care or are being stopped from gaining emergency intervention for yourself, Adult Protective Services may need to be contacted. I you need help please reach out to someone you trust or to us.

[Freaked]

HI, yes when I get ill they refuse to bring me to hospital and take all means of communication away so I can't arrange any way of getting there. My boyfriend came over to bring me to hospital but my dad locked me in the house and dragged me back in the window (I'm very weak atm so I couldn't struggle much). My boyfriend just had to go home. My parents, and my boyfriend to a lesser extent, have latched onto the non-fatal label and they think I'll just be fine whatever happens and never need any help. But as we all know POTS is not a completely benign disorder when things get really out of hand, and I'm not even sure that's all I have anymore. I'm getting fevers every day and my BP is bananas now just sitting up. I don't know how they expect me to put up with it without saying anything. I have a GPs appointment tomorrow so I'll get a chance to escape then if things are still really bad :-/

[Katybug]

I can't tell you what to do, but if you are in the USA, please keep in mind that your doctor is what's called a mandated reporter. They are supposed to contact the authorities if they are made aware of or suspect any sort of abuse. So, you could have that conversation with your GP tomorrow if you feel you need to.

[Freaked]

Thanks. I just really need some independence. My parents have a very poor understanding of POTS and their answer to every symptom is 'that can be casued by anxiety' even if it completely can't. My boyfriend can't take care of me cos he's trying to finish his degree atm (as am I). I don't know what to do. I feel like living on the street would be preferable. This is like a nightmare.

[IceLizard]

I had to live with my boyfriend for a while hidden in his dorm room with supplies and a chamberpot so I wouldn't have to live at home. I've gone through similar things and I just hope you can find a way out of this...

[corina]

Freaked, I'm very sorry this happened to you. I'd like to let you know that I'm very concerned for your safety. I'd like to urge you to get assistance from either your doctor, a counselor or if it's serious enough, the police or protective services who can advocate for your personal liberties.

[TCP]

You need to seek help from the medical services or even the authorities. Your well being is paramount and your parents ideas do not come into the equation of they are not looking after you. Take care and seek help or get someone to do it for you if you can.

[Katybug]

Freaked,

Can you please let us know that you are ok as soon as you can. I'm worried about you.

[LastUnicornLady]

Just wanted to let you know that I'm thinking about you, and I'm also very worried for you. It sounds like this is a very difficult and potentially unsafe situation. Please update us as soon as possible! I really feel a certain connection to everyone on here, and although I've never met you, I really care about you.

[Freaked]

Hi guys, thanks for the concern, just wanted to let you know I'm...well, not okay, but not worse (touch wood). My GP wrote a letter to a hospital telling them to admit me to a high dependency unit due to my BP, but my readings and bloods were okay when I got there so they just sent me home. My parents are no better, but my mom did sit with me in a and e yesterday, if accusing me of wasting the hospital's time and telling me to ask to see a psychiatrist the whole time. Still the fevers. Urgh.

[IceLizard]

Hi Freaked and thanks for letting us know that you are OK. Did the hospital try taking your readings while standing you up? My readings can be normal lying down but can become dramatically different when standing. Can your cardiologist or GP explain more about what is happening with you to your parents? Do you think they would listen?

[Loulou]

Hope your okay. Maybe there are other things going on as well. My Aunt has a pacemaker for VS because her pulse dropped just too low. Also, fever is a symtom of Mast Cell. Hyperadrengic pots can also make your bp crazy. It sounds like you need a work up by a team of doctors. Your pulse should never get to 10. You should see a doctor right away. I wish you a better day.

[little_blue_jay]

I am shocked at how your parents are treating you! An ill person deserves better than that especially from their own parents. This is very upsetting to me.

I'm glad you're doing a bit better. 72/62! Goodness, the lowest recorded BP I've had was 94/68 and I felt weak and tired! Can't imagine yours!

You're in my thoughts, if your parents had to live one day with your symptoms they'd come out of it with understanding and empathy! Of all the people in the world your parents should take utmost care of their children, not disbelieve them when they are so obviously sick!

[Lethargic Smiles]

My chest tightened just reading this. How horrible! I'm almost positive your POTS wouldn't be flaring up quite so bad if you didn't have such stress and had a supportive environment. I know even small stressors can make me flare, not because I have anxiety, but because my ANS is already all messed up -- it can't handle extra stress! The worst flare I've ever had, which landed me in the hospital for a week, happened after a really toxic person in my life caused a ton of drama. I have POTS no matter what, but stress definitely impacts it.

Maybe going to a psychiatrist would be a good idea. Not because I think you're having psychiatric problems, but because a psychiatrist could evaluate you and write out a report stating you do not have an anxiety disorder or depression and/or that isn't causing these symptoms. That's what I did! It was a Godsend prior to my POTS diagnosis because some doctors would say "well, you're just depressed" and I could show them the report stating I am not. The doctor said I scored as having depression, but he wouldn't dream of diagnosing me with it because the reason I scored high is because of my fatigue and inability to do things I love due to illness, not because of a lack of desire/ability to do things. I didn't score as having any abnormal level of anxiety.

I agree it sounds like you need a thorough workup. What sort of testing have you had so far?

How is your relationship with your boyfriend's parents, any siblings you may have, or your other family members? Could you possibly stay with any of them while you get things sorted out with doctors? I know I'd take in a family member going through what you are in a heartbeat!

Have you spoken with the doctor since you got sent away from the hospital and asked what he recommends for you since your living situation is not safe and you are much too ill to go to some sort of shelter?

I don't understand how someone would think your illness being nonfatal makes it insignificant. Would blogs where people write about POTS and how their family supports them be helpful at all to helping your parents see what a terrible decision they are making, or is it beyond that? What about medical journal articles? What about the fact there is a whole clinic at Mayo devoted to your illness -- why would they create that if it wasn't a big deal? I am sorry if I am ranting, but I am outraged on your behalf. You may not have support there at home, but we are always here for you!

[Lethargic Smiles]

Please keep updating us. I am very concerned about your safety. We are here for you!

[Freaked]

Hi Jackie M, just saw your lovely posts. Thanks for your concern. Unfortunately I don't have any other family and I couldn't possibly ask my friends or my boyfriend's family to look after me when I'm this ill. I can tell even my boyfriend is sick of nursing me at this point and all this drama with my parents. I need basically round the clock care and I'm not very fun to be around; I can understand why everyone's sick of it, I just can't believe the way my parents are expressing it. I've suggested the possibility of a care home until this spell passes, but they're too expensive.

My specialist is away atm too, so that isn't helping anything. Anyway they claim he's just humouring me for the money or i'm somehow fooling doctors. I've showed them newspaper articles and this forum but they say everyone here is a freak like me so haha. I've actually been trying to see a psychologist for a while, but ironically I've been too sick to go or they ended up being up two flights of stairs. It was a psychiatrist http://forums.dinet.org/index.php?/topic/24449-horrible-psychiatrist/ I saw before my TTT that started all this so I'm kind of scared of them now, considering POTS isn't very respected in this country. At the time they wanted to sue him, cos it's only when I get very ill that they start saying I'm crazy and anyone would fail a TTT (as well as my tachycardia, i nearly passed out after standing for twenty minutes with no provoking agent); when I'm doing fine they believe I have POTS. But atm they say they need to stop 'indulging me' and my boyfriend needs to stop 'playing along'.

They did this kind of thing with my cat too; they kept saying she was fine as she was wasting away and refusing to bring her back to the vet until she died.

Today my mother pulled my hair and started singing 'crazy person' at me mockingly when I felt ill. Yeah mom, I'm definitely the crazy one. My right calf came up in a bunch of bad bruises yesterday and my dad actually accused me of doing it to myself before even he realised how nuts that was. But at least they let me go to the hospital to make sure it wasn't a clot (they don't pay my hospital bills). He also accused me of not eating on purpose to make myself sicker, when in fact I make sure to force myself to eat even though every bite makes me want to vomit. I mean I had a scope when I was a teenager that showed I had an inflamed stomach lining and when it gets bad enough I start vomiting pink froth. He obviously thinks I have amazing control over my body. Sorry, ranting again.

[Macca]

Hi Freaked

Really sorry to read about how your parents are treating you and like the others who have posted here, very concerned for you. Your earlier post noted that you live in Ireland and I did a google search on the social welfare system over there (I live in Australia) and thought I'd pass on this link to the Irish citizens information website, & in particular a link to information about respite care for people with disabilities:

http://www.citizensinformation.ie/en/health/health_services_for_people_with_disabilities/respite_care.html

It might be worth talking to someone at the citizens information service about your situation, to get advice about what options you have in regard to care as a disabled person etc.

I wish you all the best and hope things improve for you.

[Katybug]

Freaked,

I am still very concerned for you. I want you to not let what they are saying get into your head and mess with your self esteem. No matter what illness you have, even if it happened to be depression or anxiety, no one has the right to pull your hair, belittle or antagonize you. Let's just suppose it was depression and anxiety ( not that I think that's your problem), do your parents feel like it is acceptable to bully people with these afflictions? No matter your disability, you are worth being treated with respect and kindness....not because you're sick but because you are a human being with thoughts and feelings.