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Hi!


Corzy
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Hi!

My name is Cordelia, I'm a 21 year old from Australia. I have had NCS for about 11 years (badly for just over 2 now) and have just been diagnosed with developing POTS in the last few months.

I've tried writing on these sorts of support boards before and I find it quite hard because the conditions are so life-effecting and I feel like if I talk about it all too much I will _become_ my syncopes, rather than just dealing with them. But I now realise, I need support because it is all just too much to handle! I'm sure you all know what I mean...

I look forward to getting to know you all, and reading about all your tips for dealing with all this! It can be overwhelming at times.

Cordelia! :lol:

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Cordelia--welcome, glad you found us. Sorry that you are dealing with these life-altering conditions. I agree that there can be a fine line regarding managing vs becoming your condition--I understand completely. But, it is great to have a helpful group of understanding people, experiencing much what you are, at hand, when you need support and understanding or have questions. I think you will find this is a special group of people here and there is a wealth of collective knowledge at your fingertips here at DINET.

Katherine

PS I LOVE your first name :lol:

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Hi Cordelia,

Like you, I have both POTS and NCS. Also, like you, I initially had a hard time with seeking support. In the past few years, though, I've realized how helpful it is to have a place to go, other than just my family and friends. Everyone here understands exactly how hard day to day living can be--and we take turns giving support and getting support. I think it's great you've found us and I hope that being here helps you.

:P Nina

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Guest tearose

Hi Cordelia! Welcome to you there "down under"!

I'm a little late to welcome you along with the others but still wanted to say "hello"!

I've been in the "fix it shop" and am just feeling well enough to catch up!

So, what I wanted to also say is that: here, you can say and feel whatever you need to say/ feel as you learn all about POTS. There is no fear in becoming your symptoms long term because you will learn how to manage them...eventually. It is very real and very normal to feel overwhelmed as you first learn and... then even seasoned POTS people have setbacks! All is quite normal for us dysautonomics! :P

Learn to be gentle with yourself and managing it won't be so hard. Afterall, you didn't ask for this physical challenge but you are dealing with it! Hopefully, we can help you deal with it in a more positive, proactive and peaceful way!

Hope you are doing okay.

What do you call those not there down under? Are we considered the "up over"? :)

being silly, tearose

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Hi Cordelia,

I am new here too but have had POTS for years. I think we all have a need to talk about our illness. It is therapeutic and normal. It helps me to make sense of it, so I can accept it and go on. No-one understands it as well as someone else with the same illness, so I think this place is a godsend. You are not alone.

Karyn

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Cordelia

Welcome to our family :P

I know what you mean about ignoring and just dealing with it, I do that often, in fact sometimes I think most of my life.

But this family here has been wonderful for me and it's really nice to have others to share it with instead of dealing with it all on your own.

Steph

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Hi Cordelia and welcome to the group. I think we can all relate about not wanting to become our illness but, for me, I have found this to be an extraordinary group of people and NOT just because we share a common illness.

I look forward to hearing more from you!

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