So you’ve recently been diagnosed and now you feel like you’ve been left out on your own, right? Wrong. I know that the journey to a diagnosis is long and tiring, and I know it's disheartening when you finally get there and they pretty much just turn you away. But you're not on your own. There is a wonderful and supportive group of people that are going through the exact same thing as you, and we’re all here to help. Doctors aren’t much help with M.E, there’s not all that much they can do until more research is conducted. My advice? Talk to someone that’s been there. Find someone who is down fighting in the trenches with you.
Social media is the best tool for this I’ve found. I know it’s not ideal when it points out that all your friends are on nights out or some sort of adventure, meanwhile you’re still in the pyjamas you were in 4 days ago. But don’t give up on it. It can bring you the most amazing people, like it did for me. If you're one of the people I've met through an online spoonie community - thank you so much. There's too many of you to thank by name, what a wonderful problem to have right? Whether we continue to speak on a regular basis, or we had a one time conversation - I'm very thankful for you.
If you haven't already, I highly recommend you search through hashtags including but not limited to: spoonie, spoonielife, spoonieproblems, chronicillness, chronicpain and mecfs. I promise you, you won’t feel quite so alone. Eventually I'd like to build this blog up to be a platform where sufferers can meet like minded people in a similar situation to themselves. For now, feel free to follow the blog on Instagram where you're perhaps more likely to gain interaction with others. I'd love for you to join our little family.
M.E recovery is a bit of trial and error, so take what people say with a pinch of salt. What works for someone more than likely won’t work for everyone. However I’ve found the comfort the community brings is far more valuable. You can come to us at 2 in the morning with bloodshot eyes and a snotty nose and we’ll virtually hold your hand. You can come to us at 2 in the afternoon because you’ve reached a milestone, and we’ll be smiling down at our phone screens and cheering you on. We’re there with you, every step of the way.
M.E is rubbish. Let’s be honest. But when Christmas rolls around, and the cards trickle in from up and down the country each with messages similar to “I’m glad you’re in my life. Sending spoons” you realise that actually, it’s not all bad. And somehow, if we’re all in it together, we’ll get there in the end.
You are not on your own.