Taiko drumming. Yeah, those really huge Japanese drums...that's my newest thing and I love every second of it. Who doesn't like banging on a huge drum?
I sometimes wake up in the morning and wonder what life will throw at me that day. EDS is a careful balancing act with constantly changing variables thrown into the mix. We have little choice other than to accept it, adapt and make it work.
Firstly being honest about everything and accepting it, is what has allowed me to find things that work. Being honest with myself has been the most important thing. I had to learn to really listen to my body and follow it's lead. My pain tolerance is ridiculously high and trying push through it, will not always make things worth it. I've had to change expectations of myself and what I could still do without major consequences. That ranged from choosing to stay up an extra couple hours at night to choosing not to have my own children. I've also chosen to be completely upfront and honest with my employers about EDS as well. It took some guts and a leap of faith, but I have been lucky to have employers who really try to understand and accommodate me as much as possible. I think part of that success has come from them knowing that I work hard at making things work for myself, and trying to be flexible with them as well. EDS has also messed me up the head . I knew that it wasn't something I could work out for myself and needed to get help. After avoiding it like the plague, and having a harder time with it as the days went on,I finally went and got help. Being miss independent wasn't working for me and I just had to accept it.
Finding things that work for my hands hasn't been overly horrible and I'd like to keep it that way. I don't wear too many clothes with buttons, zippers or snaps because it slows my old-man hands down. I use a rubbery/sticky sheet of plastic (cut to 4"x4" pieces) to help me open jars/containers or hold on to things. I use a lot of Nalgene (http://www.nalgene-outdoor.com) containers and dishes because they're virtually indestructible and I'm constantly dropping them. I use a pen/pencil grip for writing, so fingers won't bend so much or sublux. It also helps decrease the intensity and duration of writing cramps. Keeping my hands warm is key. If they're cold, they just won't work. My bendy friend Sama did a great You-Tube post on writing tools http://www.youtube.com/watch?v=UvqJLW1IXpA
Keeping warm has been key for me. If I get cold, my joints feel like they're being crushed together, then the rest of my body feels like it's being gnawed on by big invisible jaws. In the winter I walk around the house wearing polar fleece pants/hoodies and wool slippers. I have polar fleece bed sheets (sooooooo comfortable) and put two heating pads in my bed that have an automatic shut off. I take really hot showers/baths and don't let my hair air dry. If I catch a chill, then I pay for it, for the next 2-3 days. When at work, or anywhere else I wear wool socks, long-johns under my pants and usually a sweater with a layer underneath. My coat is a combination of two coats. The inside layer is a wool/polyester jacket from the MEC which keeps in the warmth and is breathe able. The outer layer is a raincoat from the MEC that is waterproof and wind resistant. With that combination I don't get wet or cold.
I'm pretty sure you know by now that using natural medicine has been the best decision I've ever made. I take a bunch of supplements and vitamins (msg. me if you want the list) , use natural balms for sore muscles/joints, get acupuncture, massage and chiropractic treatments. I cut out a lot of foods, caffeine, preservatives and any other chemical grossness.
This link is full of info. on the subject: www.ukiahclinic.com
Instead of going through life at warp speed I learned to slow down. It definitely wasn't easy, it was a long road and I'm still working on it.The thing that makes me the happiest is being outside. I know I can't paddle, hike or play contact sports anymore but I can still take short walks, and literally stop to smell the flowers. Now I can stop to feel and smell the leaves on the trees, I can watch the shadows from the leaves dancing in the wind, I can take a deep breath and just enjoy it for what it is. I can sit in the warm sun on my balcony and read or take a nap. Best of all, I can play my didgeridoo. I've always hated yoga and any kind of breathing exercises. They were the most boring thing on the planet, so boring that it used to stress me out. With my didgeridoo, I'm getting all the benefits of the breathing exercises but it's disguised and I fall for it every time. I end up relaxing, zoning out and getting completely distracted from pain. It's also very possible to play a didgeridoo laying down. Some of my best times playing the doo' is when I'm stuck in bed and tired of reading.
When I can anticipate a bad EDS day, I do it my way.Last month ,I had simple GI day surgery. We all know it's not so simple when you've got EDS. I knew I'd be feeling like crap as soon as I woke up. I had to fast the night before, be up early (mornings don't work well for this girl, they hurt) and have to deal with a whole slough of doctors who had no idea what EDS was. Not to mention the whole pre. & post-op bit. After trying local anesthetics 5 times they gave in and sedated me. It was wonderful. I had an awesome nap and didn't feel a thing. Upon coming home, I felt like I was hit by a truck. Luckily I had done a pre-emptive strike and was ready to make it work for me. I had a bucket of vanilla ice cream, a variety of pop and a frosted glass ready for a ice cream float. After polishing off that delicious float, I took some Po-chic (Chinese medicine for upset stomach), grabbed a hot shower and crashed in bed for a nap. A couple hours later, I woke up ready for an acupuncture treatment which is about a 30 second walk from my front door. That's right, I made my crappy surgery day work for me! What could be better than coming home to an ice cream float, hot shower, nap then acupuncture?
Tips on LIVING with EDS
Don't be afraid to try new things. Something may not work one way, but who says it can't work another way?
Be honest. It's not always easy but it makes life a lot easier when you're not trying to convince yourself of something else.
If you're having surgery, plan ahead to surround yourself with everything you like when you get home. Recovery is so much more pleasant that way.
Don't ever stop trying to make it work for you. Lift your chin up, and keep going.
"Do what you can, with what you have, where you are."
(Theodore Roesvelt)
Don't be afraid to try new things. Something may not work one way, but who says it can't work another way?
Be honest. It's not always easy but it makes life a lot easier when you're not trying to convince yourself of something else.
If you're having surgery, plan ahead to surround yourself with everything you like when you get home. Recovery is so much more pleasant that way.
Don't ever stop trying to make it work for you. Lift your chin up, and keep going.
"Do what you can, with what you have, where you are."
(Theodore Roesvelt)
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