Sorry if you thought this was an update but the list of useful stuff was too long for the description so here are some things I find useful:
The Spoon Theory by Christine Miserandino is an awesome way to explain illness and fatigue (not just being tired but being entirely incapable of things! Shown in chapter 18) and is what Brooke shows Chap and the guys.
Stickman Communications are little cartoons to help if you can't or don't want to speak and also useful for difficult explanations. She also has books which are really cute and good for younger kids!
TENS machines are good for misdirecting pain and stuff (mine is my lifesaver if painkillers aren't working it takes the edge off the pain a bit and it's not too expensive, I think mine was about £30)
Places like Independent Living Centres which have some great tools (like the cutlery Brooke uses)
In the UK (although I think it can be accessed from elsewhere), I use Hypermobility Syndromes Association website (HMSA) which has a really good and responsive forum. There's also 'Ehlers-Danlos Support UK' which I haven't really looked at.
In America, there is the Ehlers Danlos Syndrome Foundation which has information cards to give to doctors (as Brooke does) Again I've not really looked at this all that much.
Also, this isn't important for everyone, but my body struggles with hydration or something so I have at least 1 Nuun drink a day (it's a type of sports tablet that goes in normal water and tastes quite nice really!) This basically is meant to saturate my cells with ions and hydration to help them work better I think. And it's better than water because it doesn't affect the water potential of my cells (go Biology!) It has been beneficial for me so far!
And if you know someone with any chronic illness, don't ignore them! Let them know you're there for them and let them know that you won't leave. That's one of the biggest things that's helping me now, I have at least 2 friends who are useful for grounding me and literally just saying 'Well done for still being here'. So yeah, just be kind and understand if they don't want to talk, or if they can't always do everything you want them to. I'm also certain they'll be feeling way more upset at not being able to join in than you especially if they think that it upsets you.
