TED Talk about ME/CFS

I first heard of Jen when she began work on a documentary about ME. Her TED Talk is newly up and has been making the rounds. She is a fantastic advocate and speaker. If you haven’t seen it yet, this is definitely one to share.

I have to admit, I didn’t watch the video for a few days in case it was too emotional. It is emotional (especially for those of you who have been severe, or if, like me, you recognise some of the people in the photos in the talk to show just how bad ME can be) but it is so good to see this message getting out, and in such a moving and intelligent way.

People like Jen are change-makers, and we need change so bad.

What happens when you have a disease doctors can’t diagnose

Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she’s encountered in seeking treatment for her condition, whose root causes and physical effects we don’t fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.

You can also read an interview with her here.

Happy New Year

I was so glad for our Minecraft server tonight. I was given the ‘flu for Christmas and I am still in bed with it.

I spent the lead up to midnight scouting for animals for my farm. It is really cool sharing the server with other people, and totally changes the experience of the game for me. For one thing, you see all the things people have made and all the thought and effort they’ve put into it. For another, it brings to the game the presence of other human beings. Even when no one else is online, the buildings and farms aren’t just pixelated thingamajigs: they are the creative projects of your friends. With anything I make, I imagine others coming across it and having a look around. I really like seeing what other people have done.

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After I’ve moved the location of my house, I’m going to see if anyone wants to come and explore new areas of the terrain with me.

What has been interesting is that people’s use of the game has been different than I expected. I thought we’d do more things together, but mostly people seem to want to do their own thing. They go on the game at the end of the day for some quiet alone time.

Turns out, that’s mainly what I like using it for too.

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Edited to add pictures.

2016 in 10 Gifs

1. Going to the pub

2. Going to cafes

3. Hot chocolate

4. And that one time we had a picnic

5. Riding out the heatwave at The Star in Beeston

6. Crafting

7. Artsing

8. Breaking open the board games

9. Minecraft

10. Brunch at my house

Here’s to more hanging out in 2017

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What kind of meet up is this?

Oz: We should figure out what kinda deal this is. I mean, is it a-a gathering, a shindig or a hootenanny?

Cordelia: What’s the difference?

Oz: Well, a gathering is brie, mellow song stylings; shindig: dip, less mellow song stylings, perhaps a large amount of malt beverage; and hootenanny, well, it’s chock full of hoot, just a little bit of nanny.

Hooked

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Deli is a veritable trove of unusual jams, artisan crackers, craft beers, and creative kitchenware. Last week we missed it. We met at my house instead. There was a lot of weather and I was feeling under it. We draped the electric blanket over the sofa, grabbed all the pillows, and added several squares to the blanket pile. Only sixty more to go!

We went back to our usual table today. After the obligatory ritual of browsing the shelves and mentally noting potential presents for people we know, we ordered teas and coffees and settled down for a good yarn.

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I think Claire’s square is the success story of the day. Last week, she didn’t want to try because she didn’t think she could do it. I taught her to make this:

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And now this:

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Knowing no one my age with my condition made me feel alone and completely different. My healthy friends don’t always understand how I struggle. Thanks to this group I now know there are people my age.

The Project Begins

I bought the hooks and yarn so everything was ready when five of us met at Deli cafe to begin our first project as a group.

Only one other person could crochet, which turned the meeting into a sort of beginner’s class. (I looked it up and the price for of the most popular crochet classes in Nottingham is £60. Ours is free and, by the looks of it, you learn a lot more too). It was really enjoyable.

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We talked a lot, and ordered various pots of teas and far too much cake. I find it tiring doing the group, but this left me feeling mentally energised in a way I hadn’t felt in a long time. I was also genuinely impressed by how people learnt new things.

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This project cost me £25 to buy the first lot of materials for. If you want to help fund it (or support the group in general) then you can donate here. Thank you!

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Meet Up Announcement

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I’ll bring the hooks and yarn, and you can bring some change for tea and cake.

Beginners welcome. If you don’t know how to crochet, I will show you. If you don’t even want to crochet, you are welcome to hang out too.

This will be the first meeting of a string (no pun intended) of crochet meet ups. You can bring your own stuff or work on our group project: a patchwork blanket.

It is a great pattern for beginners.

Deli has wheelchair access at the door, and downstairs loos. It is small inside though so very big powerchairs might not fit. Deli is highly regarded by locals and has been recommended to me by so many people I’ve lost count.

Feel free to bring other crafts or projects if you want to. If you want to join in with the patch work blanket, all the stuff you need will be waiting for you when you arrive.