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icesktr189

Getting Your Feelings Hurt

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A week and half ago my sister asked me to watch her kids on the 13th and the 14th. I told her what I always tell people, which is that it depends on how I feel. Well, this week has been very crazy and stressful because we are moving next week and I have been on the phone all day with the leasing agent. She then texts me about an hour ago and basically says well thanks a lot. I guess I will find someone else to watch them. I feel like crap about it. I haven't heard from her all day and this is the first thing I hear. It just really upsets me because she knows about my illness and I haven't even left my house in 4 days. I keep rescheduling going to my moms house because I am just too weak and tired. I hate when family and friends make you feel bad for things that are out of your control. We are not super close because we didn't grow up together, so now its kind of awkward. I really just don't even know what to say to her.

I just needed to get this out.. thanks for listening :)

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I'm so sorry Dani, I know how you feel. I'm afraid there's nothing much you can do. Just hope you'll feel better soon as it wasn''t your fault and actually if I were your sister I wouldnt have wanted to ask you considering the move coming up not to mention your health!

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Hi dani,

Dealing with freinds and family can be so dofficult at times. Esp if they don't get how limitted you

are. My siblings seem to get it most of the time. But I can't say the same for all my family.

Did you try texting her back and saying that you're sorry you can't do this and how sad it

makes you that you can't spend the time with your neices or nephews ? And even tho it was bad timing, it sounds like fun. Are they old enough to help ?

I understand your stress level because I'm sick too but maybe she's too stressed out and just needed some help. Esp If she's a single mom, she may be feeling overwhelmed.

Good luck on your move. D

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So sorry you are dealing with this on top of moving and being sick. Some people just don't "get it" and they never will, unfortunately, and that is not your fault. Maybe when things cool off you can show her a copy of "The Spoon Theory" to read and it might help her to understand better where you are coming from. I know how hard it can be sometimes. Hope you get to feeling better soon and best of luck with your move.

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Hi Dani,

I am so sorry that this happened. You're right, these sorts of things are unfortunately out of your control. I'm finding that the unpredictability of this condition is one of the hardest things to deal with. Having to turn down things last minute makes me feel very guilty sometimes. I'm sure that you really wanted to watch her kids and would have done it in a heartbeat if you weren't feeling so darn crappy. I actually think that you showed a lot of insight by knowing your limits. I hope that things work out soon. Take care :)

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Boy that's a bad situation Dani. Maybe you could offer to take them once you are moved and feeling up to it. (I can't even imagine trying to move with our problems!)

I had a friend who is a really nice guy tell me "I think you just like all the attention you get from doctors." Now what do you say to that? :(

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Wow, people just don't get it do they. I have started to to print out info for my friends, and ask them to view the video on POTS. Some are responding better now. more understanding. But when family doesn't understand, that really hurts.

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I really hate hearing stories like this and I'm sorry it's such a common experience for us. My friends pretty much ditched me when I got really bad a couple of years back. I was in grad school at the time and the department basically didn't believe anything was wrong with me. I got sympathy from ONE professor (out of about 10 I interacted with regularly). One even dismissed it as "probably just seasonal allergies" while I was undergoing testing and had zero energy to go to class. Yes, seasonal allergies often cause sudden fainting and seizures. !!

It's just so ridiculous because I feel like if any of us announced we had some form of cancer, people would be smothering us with offers to help.

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We are the one's that are having our issues with health and so we see things through that lens - that does not mean we are self centered and heartless. The thing that gets me is that we have to seemingly cater to or tip toe around 'others people's feelings' and lives because of our own weaknesses that are just part of being human. So when I feel the worst is when I have to pull it out to do my 'explaining' in a way that helps the person not to feel slighted. Over the years I wonder then am I just simply too sensitive. Like should I just be short and sweet and not care so much what others think. And cut others slack too when they hurt me and just leave it all alone.

Like in your situation - what would have made a difference - calling her daily 3 days prior explaining that with the up and down nature of your health conditions being a 'norm' you are now in a 'down' so while you'd like to help you know it's probably not gonna happen? Like keeping the other person hyper-informed of your condition so that they clearly do not rely on you? Then call repeatedly keeping her up to date to the last second - where you finally say, "yep just as I had suspected I barely have enough energy to think about the things I need to do - let alone do them, so sorry I cannot watch the kids".......

My mind's thoughts all compete for attention: being angry that they are just so 'dumb' about it all even though you've educated them, being angry at myself for having such a 'dumb' illness, self-doubt in maybe I simply don't articulate the situation clearly at all, doubt them and most of the human race for having any caring or warmth at all on a bad day, wanting to hole up and be anti-social as social outlets allow suspicious people to give side-long glances and ask probing questions that are inappropriate if not embarrasing.

I feel for you - I truly don't have the answers - but I'm sorry this happened and know you would have absolutely helped this person out if you had been able. And sometimes just regular life stuff like moving is overwhelming let alone have a chronic 'energy loss' issues on top of it all...but they are blind - truly blind in 'their need' - heaven help us all!

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YES> YES> YES>

All of us are on the receiving end of other peoples agendas and they get pissed off when we cant "commit" to

something according to their timetables.

I have learned to say NO NO NO. That way you cannot lose.

If you happen to feel good that day, then call them and say "im feeling better can i help out?"

But if you dont, they'll FRIGGIN EXPECT you to be available when in fact you may be non functioning.

The sooner you accept the fact that most people dont give a blank about your disease, especially

as it inconveiences them, the quicker you can accept this reality.

Its a hard lesson but you will learn it sooner than later.

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I know how you feel, it took five years to get my mom to be a little understanding and believing. She never listened or was empathetic. its rough, just remember you are completely jistified in how you feel.

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Boy that's a bad situation Dani. Maybe you could offer to take them once you are moved and feeling up to it. (I can't even imagine trying to move with our problems!)

I had a friend who is a really nice guy tell me "I think you just like all the attention you get from doctors." Now what do you say to that? :(

"That's a diagnosis called M√ľnchausen syndrome and I don't have it." [i'm not sure you would be comfortable saying this to your friend, but what he describes is an actual psychiatric diagnosis that most folks with POTS don't have.]

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