Learning to Live with Ehlers-Danlos
This young lady was diagnosed in 2009 and is sorting out what is important in her life. She has some good ideas for productive and positive activities to do when EDS has given you some extra “down time”.
“It has been a while, and things are not looking good. I have been bedridden for over five months now, no improvement, no hope whatsoever. It has been increasingly hard to keep my sanity, if I ever was sane to begin with. I am stuck in every sense of the word. All I can do is try to get through it, distract myself as well as I can and hope that somehow change will come. So I thought I’d share some of my distractions with you. Simple as they are, it took me a long time to find them. Maybe you can use them, what do you do to pass the time?
Reading: most of the time I don’t have the concentration or energy to read, but when I do it is great to escape into a world that is not mine. Sometimes I read non-fiction too, it makes me feel like I’m moving forward.
Playing games: I get bored with games pretty fast, but luckily there are a lot of them. I play Minecraft once in a while, and Neopets is usually good for a few days of distraction. If all else fails, there is always another stupid Facebook game.
Watching series: same as with reading, it provides an escape into another world, but one that requires less effort. Unfortunately there is a limited amount of good series, and watching too long makes me passive and even more depressed.
Online communities: when I have the energy I participate in support groups like Gimpgirl community and others. It is a great way to find friends who can actually understand what you’re going through.
Folding: I started doing origami after I saw some awesome youtube videos with instructions. It is actually not that hard when you have visual instruction and it is cheap, all you need is paper. It took some figuring out to be able to do it lying down, but I make do with a spoon and a lap table, lying on my side. I can only do a little of it, because of my hands, but it helps me to be creative.
Volunteer work: there is actually a lot you can do from bed, contrary to what you may think. Especially when you’re good with computers or if you are a programmer. There are always organisations looking for people to help them with their website for example. But even all you can do with your computer is send e-mail, there is something out there for you. I volunteer at several support groups, I’m an active member of the and I even got involved in a research project at Ryerson University. When my hands allow it, I contribute to open source projects and I even started a foundation with some friends. That may sound very impressive, but with the limited energy I’m only able to spend about 30 min a week doing all that. However, it does make me feel useful and that’s worth a lot.”
Volunteering is an important part of this young lady’s life and her contribution makes her feel worthwhile and fulfilled.
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