#SpoonieSpeak

I noticed a gap in the Twitter sphere for a chat for ‘Spoonies’, that is, those suffering from a chronic condition (check out Christine Miserandino’s Spoon Theory for a full explanation). So I decided to set up #SpoonieSpeak!

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There are currently two chats. The first being the #HAChat run by @wegohealth which takes place every Tuesday at 3pm EST. The second being the #SpoonieChat run by @DawnMGibson on Wednesdays 8-10pm EST (this works out 12-2am UK time!). This chat was never going to be something I could feasibly be a part of!

I know from experience that going out when you have a chronic condition isn’t always easy! This was something that conversations with my ‘Spoonie’ friends confirmed.

I felt that it was important to create an environment where people could come together as friends to chat about all subjects, not just those that are ‘Spoonie’ specific.

Friday & Saturday nights are the ones where people typically go out. I decide one of these would be a great choice, as they are the times those with chronic conditions are most likely to feel left out.

From this, #SpoonieSpeak was born!

‘Because not everyone can go out on a Friday night #SpoonieSpeak is a chat for spoonies who want to feel like they’re out with friends while still in their onesies!’

So grab some snacks and your favourite beverage and join @SpoonieSpeak on Twitter every Friday 7-8pm GMT/BST! Not on Twitter? I’m hoping to set up a Facebook group for #SpoonieSpeak to provide support and positivity for people throughout the week.

You can also check out highlights of Previous Chats!

As of August 2017, #SpoonieSpeak is co-hosted by @hamrowannie. It’s great to have Annie helping me, she’s been a great support of the chat from the start.

17th November

Topic: Planning Days Out

Q1. Where do you start when planning days out? What’s most important for you to consider?

Q2. How far ahead do you start planning your day out?

Q3. How do you decide what/not to take with you when going for a day out?

Q4. What advice would you give to new spoonies for planning days out?

24th November

Topic: Coping With The Aftermath Of Difficult Appointments

 

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  • Alas, yours is another one I won’t be able to make. I work graveyard shifts in the EST time zone. Curses. :( Oh well, still following the project and think it’s fab! Best of luck on this endeavor. I’m sure it’ll work out wonderfully.

    Just offering – If you ever want a guest moderator at 3-4AM EST (to catch GMT people on their morning commute, or Australians in their early evening) let me know. :P

    • Tania Jayne

      Thank you so much! I’m toying with the idea of setting up a Facebook group to extend the chat. It’s something that’s been requested but I haven’t got the spoons to put it into action at the moment. Is that something you might be interested in being a part of if I were to set it up? Xx

    • Thank you so much! I’m toying with the idea of setting up a Facebook group to extend the chat. It’s something that’s been requested but I haven’t got the spoons to put it into action at the moment. Is that something you might be interested in being a part of if I were to set it up? Xx

  • Thanks for this. I’ll definitely check it out.
    http://worldfromemmasbed.blogspot.co.uk/

    • Tania Jayne

      Fantastic! It’ll be lovely to have you Emma. Xx

    • Fantastic! It’ll be lovely to have you Emma. Xx

  • What a fab idea..if i’m ‘okay’, will be joining in. Better than a forum I feel, look forward to meeting fellow spoonies too.
    Heidi x

    • Tania Jayne

      It’ll be so good to have you join us! Xx

    • It’ll be so good to have you join us! Xx

  • Yvette Moreau

    Love this idea! It’s a great way for spoonies to connect!

    • Tania Jayne

      Thank you so much! Xx

    • Thank you so much! Xx

  • I enjoyed last night, firs time I took part in an online conversation. Did you mention a newsletter to sign up to? Where is it?

    • I’m so glad you enjoyed the chat Jen! Here’s the link to sign up to the newsletter: http://eepurl.com/bUAgCT. I’ve been working on adding it to the bottom of all my posts, but it’s taking a while! Xx

      • I use a wordpress plug in called bottom of every post – it does it for you !!! so much easier

        • Thanks! I’ll have to check that out. Xx

  • Gillian Brewster

    I will definitely look at this next weekend! I’m looking for support as just can’t seem to adapt to life as a spoonie. My life’s totally changed and work, home, friends life have had a severe battering. Looking forward to it.

    • It’ll be lovely to have you! Spoonie life is hard, but we’ve such a supportive community of people who understand in the chat. Xx

  • thewonkyjen

    I love these chats when I make it in… my dad’s work schedule requires dinner between 6 and 7pm and I’m the household cook…so a lot of the time I’m cooking, eating or just so darn crapped out that I don’t make it and this makes me sad.

    Tania…you should start every chat with ‘jen says hi’ if I haven’t confirmed by go time :P

    • Aww!!! I’m so glad you enjoy the chat’s Jen! It’s lovely to have you join in when you’re able to. I will definitely add in some random “Jen says hi”s for you! Xx

  • Karen Elizabeth Hausfeld

    I don’t know how to join in! Can someone please email me at karen.e.hausfeld@gmail.com and let me know?? THANKS. I need my spoonies & Lymies to help feel connected to people…and to share what I know with them. <3

    • No problem Karen, I’ve just sent you an email. Xx

  • I’ve followed the account recently hun, will try & join a convo/spoonie PJ party at some point, as i don’t go out anymore at night. A spoonie life can be extremely lonely, and it does for me. I just plod on but would love to join in when I can.
    Fab idea & sooo needed!
    H x

    • It’ll be lovely to have you! If you’d like a reminder tweet in the hour before the chat, just let me know. You’ve hit the nail on the head as to why I set the chat up. It can be a very lonely life even when you have people around you. I don’t want anyone to feel like they’re alone. Xx