About 25 years ago, a random thing called the internet as launched. It was a beautful thing to behold and a great way to connect with people from around the world. It was like the biggest coffee table you could behold and no matter how you felt, someone, somewhere was willing to listen via chat forums.
Looking back on the age of dial up, and how mundane it was, how long it took to move a little forward to 2019, and 99% of us have broadband, we have smart devices etc. So let me bring an idea to you.
Approx. 20 years ago, I was an avid MySpace user (nothing else existed online), we used it in a similar way to facebook these days. Creating our own space for others to explore, to tap into others that were feeling like you were. It was all legit, and we loved it.
Now that we are in 2019, I had been brewing on an idea (well two or three) and it centres around spoonies like you and I. There are no forums apart from instagram and facebook groups that you can go in and talk about how you are doing, which in theory is great, but I don’t think of myself as my birth name on instagram, I like to remain anonymous – not because I have anything to hide, but because it makes my pain easier.
When you’re trapped in a body that is trying to implode, explode, erupt, or destroy – you pick, its nice to be able to talk openly, or by private message to see how the other person is doing, to compare how the other is feeling, to talk about how crappy it is to feel awful 24/7 and how no one person in your inner circle knows what you are going through. It’s sad, but it’s an unfortunate truth.
Having been the pseudonym of iRAW for the last few years gave me insight into the fact I’m not alone. Days I felt I couldn’t take much more of the pain, some spoonie would reach out with a quote, a post, or a DM and say “me too” and it makes a massive difference. So that got me thinking.
Let’s create a forum online where we, as spoonies can help each other through the crap times. Can applaud each other on achievements and down the line – maybe bring medical people on-board to give advice. It won’t be an easy build, but it’s something similar to e-learning, and lets face it, after a final year project and masters project based on e-learning, this shouldn’t be as laborious, or half as frustrating.
So next week, if tmw’s consultants appointment goes to plan, I will sit down and plan it out, then start building it. Heck if the consultant keeps me in hospital, I can grab a note book and start planning.
I am thinking of a forum where I can aggregate data to specific categories, ie RA’s get their own area, osteo another, inflammatory another etc. etc. etc.
So let the fun begin. All feedback – hit me up on instagram. Anyone willing to get involved for graphics, moderators etc. DM me.