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Posted

This is just a rant. It would sound so, so stupid to anyone who doesn't know POTS. Feel free to ignore me - it was either write a rant or scream, so...

I live at my mom's for now. One of the things that I do is empty the dishwasher. Not a huge job, but I'm standing in one place for 10-15 minutes (depending on how many dishes need to be loaded), so can be triggering.

This weekend wasn't the greatest, symptom-wise, so I'm already not in a great mood when my mother comes up to me and starts going on about how I need to clean out my car today or she won't pick me up from the mechanics when I go to drop it off on Thursday, and then about how she paid a doctor's bill and it cost her 15 extra dollars because I never gave her the bill -

(long story...I'm on my father's insurance, but he screwed up and didn't renew it or something, so my dad gave her the money and my mom put me on hers for a few months. The insurance company was refusing to cover me for last September, and it turned out to be cheaper to just pay the bill out of pocket, and my mom wanted to keep the extra cash from my father (they're divorced). But she wanted me to call and see if they'd give me the insurance rate - which I did, and they would - and then she wanted the paper bill they sent (with the wrong price on it, btw), and I told her I'd give it to her, but we both forgot about it. And now it's all my fault. Just annoying)

- and then about how I need to empty the dishwasher, which is running, and I need to do it today, and it only takes 5 minutes, and she can't understand why I don't just do it.

It was really bugging me - I hate being called lazy, especially now that I understand why I hate doing certain tasks and it's NOT because I'm LAZY - so I went up to my mom and (nicely) said that I wanted to clarify a few things. I pointed out that I passed out 12 minutes into my tilt test and that my hr rose to 135 within the first minute so five minutes really isn't an insignificant amount of time for me to be standing in one place. Even with my meds. I told her that I wasn't trying to get out of doing it, and that I would do it, but it's not something that I love doing and there's a reason for my reluctance that's NOT just laziness.

She didn't really care. She started yelling about how I do other things just fine blah blah blah and how she doesn't want dishes in her sink - which I would totally understand...if they weren't most often dishes that she used, collected in her bedroom, then brought down after the dishwasher was already running. And left for me to put in the dishwasher after I unloaded it.

God, this sounds so ridiculous. It's not like I can't unload the dishwasher. Yeah, I'll feel symptomatic, but I'm used to ignoring that. I think I just wanted her to give a ****. She'll complain for days about a random skipped heartbeat, but the only time she's asked me about my health was when she got it into her head that if I ever got into an accident and the paramedics needed to know what meds I was on, she'd look like an awful mother if she wasn't able to tell them. And I'm pretty sure this is the ONLY time, EVER, that I've bothered asking for a little understanding because I know her attitude about this kind of stuff. I mean, in high school she said I was being ridiculous and threatened to take me to her friend's house and make me see what actual asthma looked like (her friend has very severe asthma) when I said I thought I might have asthma...two weeks later, my softball coach had to tell her to take me to the doctor because I nearly passed out at practice (surprise! I had exercise-induced asthma). Oh, and when we went to the appointment, she told the allergist, straight up, that I was a hypochondriac. Thanks for that. It's just how she reacts to other people's illnesses, apparently.

Ack. I'm only making myself more annoyed. I'm so stressed out right now I want to scream.

I'm going to go to Starbucks and work on my thesis. Probably won't get rid of the stress, but at least I'll get a yummy iced tea lemonade out of the deal.

Posted

Sorry, also Libby. I've been there and this was a hurtful thing to have to go through. It's very hard when one doesn't get their mother's understanding with these issues. It's extremely hurtful. Sending you a cyber hug.

Posted

I am sorry and I really relate to that , I know exatley how that would feel.

Some people just can't deal with illnesses normally, instead, they will be in a complete denial, but I don't know if that is a defense mechanism or a dirty game on that person's side!

It hurts the most when that person is really close to you, like your own family member.

Posted

This is so very hard sometimes, having an invisible illness, not only for us, but also for those who don't feel all you are experiencing; I know your mother loves you, and you love your mom, but sometimes it is just as frustrating for the people around you, because it is difficult for them to understand, since they can't see evidence of it, other than medical testing, (which is actually a relief to get some answers),....even being a nurse, and having dysautonomia, it is not always easy to understand how our bodies dysfunction in so many ways. But I can relate to you so well; it's like trying to conjure up the energy to do anything... Emptying the dishwasher is hard to do, because you are standing in one place most of the time, too, which can trigger tachycardia and near fainting, and some days it's just impossible to do any chores at all. Believe me, dust bunnies have become my friends...I'm trying to get up to vacuum right now, and I just can't make myself do it <_< It's like you have to pick and choose what you will do in one day, or you will suffer the consequences the next. I also have asthma, and sleep apnea, so I understand it all, believe me. Sometimes it just helps to share and vent, because you know that we who are on this site will be here for you...prayers for better days!!

Posted

I'm sorry you're struggling Libby. Just to help you: I have a stool on wheels to scoot around the kitchen. It can be elavated when preparing the veggies etc. and I also use it to load/unload the dishwasher. Maybe an idea for you/others too?

Take care,

Corina :)

Posted

Just to add to this thread, I have had pretty close friends and family ask me to tell them whats the matter with me and why i have been ill for so long. What makes me laugh is they give you a window of about 15 seconds before there eyes start to drift and they are not interested. Can anyone tell me how to expalin pots in 15 seconds becuase we all know these types of people. And so many of us it isnt just the Pots, its every thing else we suffer with too!!!

I came up with a great tage line the other day.

" People only want to talk about illness, once you are better"

Posted

Just to add to this thread, I have had pretty close friends and family ask me to tell them whats the matter with me and why i have been ill for so long. What makes me laugh is they give you a window of about 15 seconds before there eyes start to drift and they are not interested. Can anyone tell me how to expalin pots in 15 seconds becuase we all know these types of people. And so many of us it isnt just the Pots, its every thing else we suffer with too!!!

I came up with a great tage line the other day.

" People only want to talk about illness, once you are better"

I have a friend who used to ask you "How ya doin". I knew he didn't care and that was just something he said. I looked him in the eye and asked him if he REALLY wanted to know and waited for his response. It made him pay better attention. Of course, I didn't REALLY tell him how I was doing - but, he thinks about it before he uses it as a greeting now. LOL :)

Issie

Posted

Just to add to this thread, I have had pretty close friends and family ask me to tell them whats the matter with me and why i have been ill for so long. What makes me laugh is they give you a window of about 15 seconds before there eyes start to drift and they are not interested. Can anyone tell me how to expalin pots in 15 seconds becuase we all know these types of people. And so many of us it isnt just the Pots, its every thing else we suffer with too!!!

I came up with a great tage line the other day.

" People only want to talk about illness, once you are better"

I have a friend who used to ask you "How ya doin". I knew he didn't care and that was just something he said. I looked him in the eye and asked him if he REALLY wanted to know and waited for his response. It made him pay better attention. Of course, I didn't REALLY tell him how I was doing - but, he thinks about it before he uses it as a greeting now. LOL :)

Issie

I had a teacher back in high school - crotchety old woman who was INCREDIBLY blunt and liked to rant about things - who said something that really stuck with me. She said that when someone asks you how you are, the ONLY socially acceptable response is 'fine' (or some variant of). "How are you?" is just a rote phrase and no one who asks it is really prepared for any response OTHER than fine, so they don't want to hear it.

I'd say she was pretty spot on.

Posted

Sorry to hear your mother is like this towards you. HUGS ...

FWIW. After being sick for 22 years and telling everyone I was tired all the time, I finally figured out if I told them that my heart was racing and I'm having to lay down a lot today they were more likely to get it. It gives a better picture of what's really happening too.

tc ... d

Posted

I have friends that really do want to know the answer to that question, and although they don't fully understand, they try to be empathetic...Even my husband is coming around, and being more understanding, but he takes me to all my appointments, and realizes that even going to the eye doctor, doesn't correct my vision problems, which is why I avoided going and it is my greatest concern right now.... Your mom will come around, Libby... :wub: The Lord is my strength and my song... :)

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