#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.

24th November

Topic: Coping With The Aftermath Of Difficult Appointments

Q1. Difficult appointments can leave us with a variety of negative emotions. How do you deal with these?

Q2. Do you do anything after a difficult appointment to make yourself feel better?

Q3. How do you psych yourself up for your next appointment, after you’ve experienced a difficult one?

Q4. Do you have any advice to new spoonies for dealing with difficult appointments and the emotions they cause?

When Tania Talks Signature

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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