Our experiences are sometimes wonderful, others are just hard. It can be a lonely road doing it all by yourself, and even lonelier when you feel as if you have the weight of the world on your shoulders. Through it all, we learn and grow. Sometimes, we find our niche and thrive.
Some of my hardest yet, most valuable lessons have taught me to be patient. I had a lot of a certain kind of patience. I teach kids who have autism..I didn't have patience for anything else. I learned that getting stressed or anxious will not get you anywhere. In fact, it makes things worse. We can't change the past, and can't predict the future, so is there really a point in dwelling on something we can't change, or have no control over? We can have an idea of what we think might happen and hope is always something we can hold close. But what happens when our hope and assumptions of what we thought might happen, don't work out like we thought it would? The only thing we can do next is live in the now. Take each moment as it happens, live though it and move on to the next moment. This has taken me a long time to learn. After spending the day at the hospital getting tests, going to consults and all the other fun things involved with EDS, the last thing we want to do is wait for an answer. I found it pretty common among the EDS community, that most of us looked and waited years for an answer. Yes, we just want to know what the dealer will give us in our next hand of cards, so we can have an idea of how to play them. (Hahaha what a cheesy metaphor. As you can tell, I don't play cards.) The fact is, that after those long hospital days, there is nothing more we can do about it other than to just wait. Stress and anxiety won't make the phone ring any earlier. The wait, can be agonizing and torturous. I'm a big fan of keeping busy. I like to sometimes loose myself in a good book, take my bike for a ride, play my didgeridoo and eat ice cream. When the answer does finally come, we usually end up having to change our game plan anyway.
This is when adaping to whatever happens becomes handy. EDS is discustingly unpredictable, and it's the story of my life. Instead of sweating it, I've learned to adapt. There will always be a differnt way to accomplish something. It may not be what we wanted, but new doors will always be open, it's up to us to go through them. I'm the girl who'se suppose to be going to school in England right now for something that I love doing. EDS happened, and it was one of the hardest decisions I've had to make. Giving up something you love, and worked hard for is never easy. I had to change my game plan, and after a lot of searching I've found something worthy of a new persuit. It wasn't what I had originally invisioned, but now it's possible and I want it.
I have Scottish and Irish blood. That gives me an iron liver for drinking, but a horrible temper.
I could go from being care-free to livid in about 5 seconds. Even the thought of EDS would make my blood boil. I would get angry that it has taken so much of my freedom and ability to be spontaneous away. I hated that I could no longer do what I loved, and that I was stuck in a body that hurt all the time. I'm not saying that I don't feel that way anymore; not every day is sunshine and lollipops around here. I learned that anger is a visious cycle. We get angry at our current situation which would seem justifiable. But what can we really get angry at? We can't be angry at our parents for giving us crappy genes, we can't be angry at our bodies and we certainly can't be angry at ourselves for making the choices we did to try and cope with everything. I've learned to sit back and take a minute (or a lot) to think about wether or not it would be worth getting angry over something. Getting angry won't change anything, I think it would make it worse and the most we would get out of it is an adrenaline rush. I will be the first to admit there's nothing like screaming like a three-year old and throwing things. It feels great for that moment, but what happens when you're done screaming and have to clean up whatever you broke? You're back to where you started, angry. Having a good cry can sometimes help, aside from the stupid crying headache afterwards.
Tips on LIVING with EDS
- It's spring time, literally stop to smell the flowers. It's wonderful.
- Go through the 80% off bin at your local Chapters, there are a ton of good books that will be welcomed on days when you're stuck in bed. Don't be afraid to stock-up.
- We all need some kind of outlet. If you've had to give one up because of EDS, don't give up on trying to find a new one. You never know what you'll find.
- Experience sometimes hurts, learning feels great. Blaze your own trail because there will always be another way.
- It's spring time, literally stop to smell the flowers. It's wonderful.
- Go through the 80% off bin at your local Chapters, there are a ton of good books that will be welcomed on days when you're stuck in bed. Don't be afraid to stock-up.
- We all need some kind of outlet. If you've had to give one up because of EDS, don't give up on trying to find a new one. You never know what you'll find.
- Experience sometimes hurts, learning feels great. Blaze your own trail because there will always be another way.
"Finish each day and be done with it. You have done what you could; some blunders and absurities have crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it scerenly and with too high a spirit to be encumbered with your old non-sense." (Ralph Waldo Emerson)
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