It could be just me but I see EDS written all over it. Some things are more obvious than others, and I wasn't doing anything particularly bendy in it.
Ironically, my bendy friend took it. We were at the Pride parade, this was before the EDS hangover.
To start, I'm pretty much the only one sitting on the ground. Yes, I'll just plunk myself down in the middle of a side walk, or anywhere for that matter. When my legs have had enough, I need to sit or lay down. No shame. The wheels are on their way, soon I won't be needing the ground or a floor so much. Those lovely tan lines on my shoulders are from Leuko-tape two.summers.ago. I
can't get rid of them, even with the gross fake'n bake creme. It was the only way I could be out on the water without major consequences. Yes, I know it was a crappy tape-job but I got to the point where I just didn't care anymore. It did the job, and I was more concerned about getting on the water ASAP. I would have had my toe nails painted in a fun colour, but bending over causes my neck to start subluxing; the rubbery fingers don't do well with colouring in the lines either. The ankle braces are just a little bit visible and I kind of like it. It wasn't too long ago that I had completely lost all hope of anything good in this mess. To be completely honest, I didn't care if I woke up the following morning. I didn't care about anything, and walked around like a zombie for a couple months. There is a lot that's been taken from me in such a short time. These days seem to be a litter easier in dealing with it all, but last night I realized how much I really lost in such a short time. The whole not being able to paddle anymore and needing a wheelchair hit me like a Mac truck. I will say that I've very saddened by it and wish it never had to be like this. I don't know if it's just me, or how people generally look at things we have lost, but it seems like the things that are gone, are the things I treasured most. I loved the jobs I had, there was nothing better than being on the water or just taking my dog for a nice long walk. Being able to walk for myself is currently a big one. I could do simple things like cook and bake from scratch, I could paint my toe nails, and use chopsticks. Bigger things like having to turn down scholarships at a school overseas, and loosing friends has been nothing but horrible. I'm not a material person, but I need to experience my world physically. I look back and as much as I hate EDS and what it's done to me with a passion ,I've come to realize that I have also gained.
I've learned to slow down. Funny enough, it's never worked for me. Slowing down meant stress. I still hate things like yoga, deep breathing, and generally moving slowly. Especially walking...All of those things make me want to jump out of my skin and scream. Hence the Taiko lessons, and bike-riding in traffic that I love so much. I have come to love the following things more than before: chilling in a park with friends on a sunny day, reading, blogging, taking naps in a canoe, didgeridooing,laying in a hammock in the shade, just listening to music or the water in my rock garden.
I've also gained a plan "C" that is looking very possible right now :)
Can't wait to just go back to school and do what I want to do.
The most important thing I've learned on this insane ride is to just chill. We can't make most things happen any faster, or change it. So, we can either get ourselves all worked up over things we can't control or, we can choose to control ourselves and how we respond, save some sanity, and just chill. The latter is starting to work well, funny how it took so long for me to figure it out.
When we chill out, it seems as though everything else does as well. Maybe not, but it makes it easier to handle. Especially the negative junk that comes so easily with EDS. I'm not trying to tell anyone how to live with this, we need to do it our own ways, but this is what's worked for me. Maybe if you're still looking for ideas, this may be one worthy of considering. Cause' you won't know unless you try.
I'm really hoping to not loose anymore than what's been lost already. It would essentially mean loosing my independence and that isn't an option for this girl as I don't plan on being locked in a padded room.
"You can't stop the waves, but you can learn to surf."
Just recently found out that we (my 2 daughters and I) have EDS. I've had fibromyalgia for years, and they were diagnosed with that, too. I've had to give up things over the years. I don't like it and it's down right depressing at times. There are so many things that I want and need to do, but just can't. But what is really hard is seeing them, at ages 15 and 20, having to adjust their lives and give up things that "normal" people do. My 15 year old can't even attend a full day of school any more, like her friends do. She has to adjust her social life depending on how she feels at the moment. It's hard to make plans when you don't know how you're going to wake up feeling on any given day.
ReplyDeleteKeep writing. It's very helpful. I love the "bendy friend" description.
By the way, we live 1 hour from Baltimore and found out the week before the conference.