What is “Lyme Chat”?
- Lyme Chat (or as you’ll see it’s often referred to as #LymeChat), helps connect individuals who suffer from Lyme, other tick-borne diseases, and/or other Chronic Illnesses, many of which come with living with tick-borne diseases (I have Fibromyalgia, Arthritis, Chronic Fatigue Syndrome (CFS)- the list goes on!)-
- #LymeChat is held on the first Monday of every month (TBD) on Twitter– I encourage fellow “Lymies” (A “Lymie” to me means someone who suffers from Lyme disease and/or other tick-borne diseases) and “Spoonies” (A “Spoonie” is someone who suffers from a Chronic and/or Invisible Illness; read “The Spoon Theory” to learn more); however, anyone and everyone is welcome to join in the conversation, I will never turn away any individual looking to participate! To join, all you need is a Twitter account! Also check out past questions & responses by following me @FightLyme and search for #LymeChat!
- At times, I may cancel or reschedule a chat, usually due to the debilitating fatigue I experience stemming from living with Chronic Lyme Disease. If I reschedule or cancel a Lyme Chat, it will be posted on Twitter.
- If you don’t have a Twitter account, I post the questions the next day on my blog, where you can also respond to questions! Not familiar with Twitter? Learn more here!
How does #LymeChat work?
- As I mentioned, the Lyme Chat will consist of me asking questions and all the individuals that are participating in the chat, will respond to them.
- You can join in any time, so don’t worry if you miss the first couple of questions. In case you miss it, the questions and responses I’ve gotten, as well as my own, will be posted here!
- Just a suggestion- sometimes the chat can move quickly and can be hard to keep up with; I use Tweet Deck, where I can keep better track of participants and responses- this is also why it is important to always include the hashtag #LymeChat in each tweet!
How do I respond to #LymeChat questions on Twitter?
- Specify which question you’re responding to (Q1: is answered A1: ) & add #LymeChat to each tweet. Here are questions and my personal responses to a previous chat I held on “Symptoms” to give you a better idea of what the format looks like:
Q1: This past weekend there was a full moon! Do full moons have any affect on your mental and/or physical health? If yes, how? #LymeChat
A1: I’m not sure yet if the full moon affects me (i’m now keeping track of my daily symptoms), but I was very cranky that day! #LymeChat
Q2: What symptom(s) did you experience prior to your diagnosis? What stage (of Lyme) were you diagnosed in? #LymeChat
A2: Reoccurring fevers, the flu (multiple times), every classic symptom, then my knee swelled up; ‘Late Stage Lyme’ #LymeChat
Q3: Did you have (an) erythema migrans, otherwise known as the “bulls eye rash?” #LymeChat
A3: I never had any rashes, unless when I was infected (which I was 2x) it may have been on my head, under my hair #LymeChat
Q4: What is the most unusual symptom you have experienced? #LymeChat
A4: My most unusual symptoms- all neurological stuff; one time forgot where I was, even though I had been there many times before #LymeChat
Q5: What symptom(s) do you think people don’t usually associate with Lyme disease? #LymeChat
A5: Any & all neuro symptoms; I think stating just fatigue & joint pain completely underestimate how those actually affect you! #LymeChat
Q6: What symptoms have resolved? What symptoms are you still suffering from? #LymeChat
A6: I don’t have panic attacks anymore (again knock on wood!) but think that’s from talking to someone; fatigue is the worst #LymeChat
How long is the “Lyme Chat”?
- There is no set time as to how long the chat will be. It depends on how many people are participating and the discussions we are are having with one another- you are free to join in and leave whenever you choose- the chats in the past usually last about an hour to an hour and a half
How many questions are asked during each “Lyme Chat”?
- It varies- I have been thinking about setting a specific number of questions to ask each night. However, what I have been doing is writing out the possible questions to ask prior to the chat Sunday; some nights some I decide not to ask, some are answered by a previous question that’s asked; it can be anywhere between 4 questions or 10 questions. The participants and myself may discuss one question longer than another question.
Why did I start #LymeChat?
- I first started the Lyme Chat in August of 2012. I had been participating in #SpoonieChat that is held weekly on Twitter, and inspired me to create my own chat! What I’ve taken away from the Spoonie Chats and only hope to pass on to those who participate in the Lyme Chats, is to give support when you can, for there will always be someone to give support, lend a helping hand or listen if you need to vent or talk to someone who has been or is in your shoes.
Fighting Lyme is a long journey, much of the time, the road runs uphill. Networking with others who can relate, can be quite helpful, but most of all, if I can help someone along their journey, mine will be that much better.