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We want to hear from you: please tell us about your experience of the online community.

New here! Still finding my way.

Fairyopi

Hello, everyone!

I have been recently diagnosed with hEDS and PoTS after a massive flare up 3 years ago. I’m still finding my way, trying to get on my feet and on top of my conditions. I have found myself incredibly isolated, which brings me here. Hoping to find some lovely folk to chat with, who get it.

I’m 34, Scottish lass, relentlessly positive.

Nice to meet you. X

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Comments

Rachel_Scope

Hey @Fairyopi and welcome to the community! It's so lovely to have you here and I can see you've already started chatting on other discussions which is great! Hopefully you'll feel less isolated and you'll be able to find others who can empathise with your situation.

What kind of things do you like to do?

chiarieds

Hi @Fairyopi - & welcome from me too. I also have hEDS, but just orthostatic hypotension (tho have managed to throw neurological problems into the mix). Anyway, I do unfortunately appreciate what these disorders can cause. Great that you're also very positive, so it's good to meet you.

Fairyopi

@Rachel_Scope thanks so much!
I had no idea about forums until recently. I felt lost using social media, it’s nice to find something a bit more slower paced and personal.

I love to draw, I’ve been doing a lot more of it recently. I’ve also been working on a business idea I have that will help the disabled community. I had to give up working a few years ago but I needed something to do 😂

Fairyopi

hi @chiarieds lovely to meet another bundle of positivity. 😊

I’m sorry to hear you have EDS etc too, not an easy condition to deal with.

Do you find yourself more restricted now too? Are there any indoor hobbies that distract you on the sore days?

Rachel_Scope

I'm so glad you found us @Fairyopi 😊 Tell us more about your business idea! I'm like you, if I'm not working I need some kind of project to do. The amount of qualifications I have is unreal! Ooh if you like to draw we'd love to see some of your work. We have a post called Kaleidoscope where members share their creations.

Fairyopi

me too! People here seem so friendly so far.

Well, I’m looking to create retreats for people with chronic illnesses. I used to create them for models and photographers but I’d like to help people now that I’m finding ways to help myself.
they will be based in the forest in the algarve, there will be access to holistic healers, supported days out and the opportunity to swap tips and advice etc.

I won’t be up and running for a while. I have the bones of the business ready but I have a lot to learn about actually running a business.

What qualifications do you have? Any fun projects on the go?

ooh I’ll check that out! I do love to admire some art

MissMarple

Hello @Fairyopi

I also have POTS. It can make you feel so unwell. Hope you find your online community here.

chiarieds

Hi @Fairyopi - I don't get out as often as I'd like, & tho I drive I haven't got a car.

Having been a physio helps me as I know the importance of exercise however gentle that might be.

I enjoy reading (both fiction & non-fiction); I used to have an antiquarian & secondhand book shop, & my spare bedroom is my small library! I also enjoy doing jigsaw puzzles online: https://www.jigidi.com/

Rachel_Scope

That sounds amazing @Fairyopi! I hope it works out for you. A place to relax, heal, and connect with others would be lovely.

I used to work with children so I have a lot of qualifications related to that like dealing with negative behaviour and phonics. I've lots of mini courses but I can't remember them 😂

I don't have any fun projects on at the minute as we have a one year old that takes up a lot of our time! I have work projects though which I'm really enjoying. I love a spreadsheet!

Fairyopi

@MissMarple sorry to hear you’re dealing with it too! It’s nice to meet people who understand x

Fairyopi

@chiarieds oh being a physio is so helpful. I haven’t yet managed to implement a gentle exercise routine but it’s high on the list of priorities.

That is amazing! What a wonderful thing to have had! Is it just me, or do antique book shops smell so good? 😊 I adore books, I’d have loved to have had a library in my house. What lovely hobbies you have.