Christine is on Twitter @bydls and if you use the hashtag #spoonie you can connect with over 11,200 followers!

 

 

There is a amazing growing community of our readers who have been using twitter to connect by using the hashtag #spoonie at the end of every post. These people are all fans of butyoudontlooksick.com and are all somehow connected to “The spoon theory”.  I personally (Christine) use the twitter account so many times you will be hearing directly from me. 🙂 Lord knows the things I write, tweet and like sometimes! Many times I am talking about something in my #spoonie life… but other times I might be talking about a great product I tried, or my day at the beach! The community is growing fast and we find each other by following Christine http://www.twitter.com/bydls    and by using the hastag #spoonie on all of our tweets to find one another and to support each other. It has been great fun to talk to and get to know people from all around the world. It has been such a positive experience. Come join the fun!

Hey… Over 11,200 followers can’t be wrong! 🙂

 

©2024butyoudontlooksick.com
  • Fibro Bloggers

    This is a great idea using the #spoonie
    I follow you on twitter and enjoy connecting with all the other spoonies too. I’m glad I read this as did not realise you were using the hastag

  • I’m a proud #Spoonie, I used Twibbon to add the spoon to my profile pic and have it as my FaceBook picture as well.

    I have also adapted the Spoon Theory for people with arthritis in their legs like me, it’s called the Chain Theory. Friends couldn’t understand why I got slower through the day, a quick description of the Chains got the meaning through.

    Tony, 50, Hastings UK

  • I did follow you on twitter today. It my please to be your follower 🙂 you might like my twitter as well https://twitter.com/PTA_trainers

    Thomas

  • Great idea to connect on Twitter!

  • Wow, a very good friend sent me your Spoon article and I loved it. Totally spot on.

    I don’t have Lupus, but I have something. They don’t know what, though. Some neurological thing with some auto-immune issues going on. I feel like a guinea pig. Might be MS, might be something else, labeled Fibro for right now to give my boss something to put on a piece of paper to allow me to telecommute when the pain is high.

    For the first time in my life, I want to be a statistic. Sigh. Just label me and name it after your dog and let’s move on. The scratching of heads and the “don’t knows” is more frustrating.

    This is so great. I am tired of people that say that they understand but the next minute are annoyed with you because you are too tired to do something. Sigh.

  • Laurie Bezaire

    I have finally subscribed to bydls and have used the spoon story for many years. It is hard to go from doing everything to really pacing yourself to get through the day. I don’t have Lupus, but was diagnosed with Inflammatory Breast Cancer and Dermatomyositis in January 2005. IBC is a rare but very quick spreading cancer. It is often treated as an infection or bug bite. By the time they figure out antibiotics aren’t working and test for cancer it has usually spread to the lymphnodes. I was very lucky that my “DM” an autoimmune disease, usually catorgorized with lupus, caught the cancer early. I am 7 years cancer free, but still on 3 immunosuppresants to control the blistering of my skin and sore muslces. The spoon theroy is a genius way to help people understand what you are going through, even if you don’t look sick. I have signed up for Twitter but haven’t figured out how to use it yet.

  • Finally,
    I’ve found others who really know. Diagnosed in 2007, forced to leave a 20+ year career due to Lupus. All that college education gone due to lupus’ affecting my brain and cognition coupled with daily pain and fatigue has made me feel down and out at age 61.
    Thank you for giving me a place to rally against Lupus with those who know!

  • Tim

    Suzy, if you read the Theory and feel it fits then you are a Spoonie. No ‘wannabe’ about it. Could say I was a ‘spoonie-in-waiting’ with my CP, before it stopped waiting. lol.

  • JUDY

    I THINK IT WOULD BE A GREAT WAY TO CONNECT WITH OTHER ‘SPOONIES’! I AM NOT YET ON TWITTER, BUT WILL JOIN TO BE ABLE TO MEET OTHERS WITH MULTIPLE DIAGNOSES. MANY THANX FOR THE ‘TWEET’! GOD BLESS! JUDY

  • Suzy Kemp

    Hi I am a spoonie wannabe, if you like? lol! I have just been diagnosed with Lupus (SLE) also was told today I have Mild Fibroidmylitis…so!..not a happy Bunny today!
    I live in Deal. In Kent, UK. I am 53 this year, I would love to have a friend with lupus so I am not alone anymore. Could you please Let me wear this Bird as my Profile Picture. Thank you so much!

    Suzy xx

  • Barb

    I would like to use the spoonie bird shown here as my profile pic on facebook Is that possible?