Sometimes I wonder…

Sometimes, I wonder how much people actually believe what I'm saying. I know having all these awesome symptoms and injuries sound really far-fetched.

Take last week for example, it just got crazier as each day went on. It started with one of my ankle braces coming apart. I walk with my right leg turned in, to avoid subluxing my hip. Doing that puts more pressure on my ankle, which is what I think was a big factor in my brace falling apart. Anyway, I thought I had the brace temporarily fixed with some super-glue, and the pain in my ankle would subside. I was wrong. Then, I decided that maybe taping my ankle like I used to do before the braces would help with stability. Wrong again. It didn't do anything, and I ended up with a lovely rash from the tape. Apparently your skin doesn't forget those things. I knew I had to do something, because it was getting increasingly painful. Just a quick note: I have a ridiculously high pain tolerance. If something is hurting, then there is definitely something wrong. It has taken me years to learn to listen to my body.

On Thursday, I went and got some new crutches that actually fit; taking pressure off my hip and ankle to allow some time to heal made sense. I was trying to be smart about it and give my body a break. I picked up the crutches before heading to work, and thought I could continue on my day as normal. You're talking to the girl who has always found ways to make things work with subluxed hips, neck, dislocated shoulders, you name it. Boy, was I wrong. I rely on public transit (bus, subway, and street-car) to get around when I'm not on my bike.

EDS + crutches+ TTC ='s a nightmare!!!
To start, not all the subway stations are accessible. Half the time, the escalators are broken. This week they were broken. Being the genius that I am, I temporarily chose to forget that I have EDS and to just do things I like I used to. That meant, hopping up and down the stairs on one foot, with a back-pack and crutches in hand. This also meant that I didn't think about what using crutches would do to the rest of my body. Well let me show you a little mind-map.

EDS+crutches='s subluxed wrists-> dislocating shoulders-> bruised arm pits -> really tight muscles in entire upper body -> pulling almost every muscle from the waist up -> couldn't lift my arms 20 degrees w/out pain-> breathing was painful. At least my hip and ankle were feeling better...

That meant, on Friday I was in NO shape to work. Fair enough, I'd deal with it.
Later that day I went to the chiropractor so she could give me some acupuncture and put me back together. I left her office feeling a little better, and knowing that in a couple of days I would be fine. As I was getting on the subway to go home, I slipped in someone's spilled drink and subluxed my hip. I.WAS.NOT.IMPRESSED.

With all of that said, it sounds very fishy and I'm not so sure I'd believe it myself.
Quite frequently, I forget that not everyone is stuck in a body like mine, I know it sounds strange.
This, brings me to wonder what people really think about this whole thing. I often feel like no matter what I say, or do; everyone thinks I'm full of crap and am looking for attention. I wonder what people think when I am invited to do something and decline because of my body. It's never that I don't want to do something with them, but it's that sometimes it's not worth the pain. There is always a painful consequence for all of my actions. I don't ever want to be the person to just complain about things, I'm a person who does something about it. However, there is only so much one person can do. Also, with EDS there's nothing I can do about it other than just manage things as they come up. There is so much that I choose to leave out, and don't talk about. Everyone doesn't need to know that I feel like ass everyday of my life with varying degrees of pain and how exhausting it is. They also don't need to know exactly how much it affects my body, and every single one of my decisions. I think with all the people who know me, very few actually know how it affects me. I try to keep it to myself, because I focus on the positive, it's the only way for me to get through some days. Even with doing that, I know it has affected peoples perceptions of me. I've been told that I'm letting it get in my way, that I'm making a big deal out of nothing, that I was born with it and it didn't just happen to me so I should deal with it better blah,blah,blah.

I've tried to somewhat educate my peers, friends, co-workers etc. on EDS and how it affects me. I keep out the details, and have provided some info for them to read if they want. What gets me, is that even with all of this I don't know how many of them have taken the opportunity to learn. For the most part, and I'm assuming here… they think it just makes my joints dislocate and sublux. I wish it were that simple. I don't want to shove it down anyone's throats, or constantly remind them that I'm stuck with this. The very last thing I want to be is a nuisance and that's exactly how I'm feeling. Blarf! I feel like the friend that no matter what you do or say, you can't help with any of it. I don't want to have anything to do with that. All I want, is for the people who know me to spend maybe an hour, to do some reading and understand that is a reason for what I choose to do, or don't do. Like I said in my last post, the very last thing I want is pity. I just want to be understood that's all.

What I dislike most about EDS is it's exhausting in every possible way.
Physically, waking up and going to sleep with constant pain takes a lot out of you. I try to keep active because it helps distract me from the pain, I need to be moving, and it is part of what keeps me happy. I would like to be able to run on 4hrs of sleep again, but I need about 10 to not feel so gross in the morning have a productive day. I don't even want to start on how much dislocations can take out of you, it's not fun. Mentally, I need to be distracted all the time with something else so I don't think about how much my body hurts. I have to be hyper-vigilant of my body and my surroundings in order to attempt avoiding injury. I have to constantly have a plan "A", "B" and "C", because we all know that life happens and you need to be ready. Emotionally, ha-ha..I could go on for hours. I don't often think about what I can't do anymore or what I could be doing but when I do, it hits me like a ton of bricks. For the most part, I have a positive attitude about it, but some days can be really hard. Some days I just want to crawl into a hole and never come out. Those are the days that I hate the world. It doesn't happen often but when it does, I like to just shut down and have nothing to do with anyone. Apparently those are the days when I just need to "be", and do it alone. I sometimes grieve for my past, and for my future. I've had do give up a lot of really amazing opportunities that I have worked hard for. I believe that in life, whatever you are given, you have a choice on how you're doing to deal with it; which in theory is great.
It's not so great when you don't like your options, and have to find a way to make them work. I have developed a lot of trust issues with doctors and specialists that practice western medicine. I've learned that even with advocating for myself, providing literature and physical evidence that still you won't always be believed or are viewed as a difficult patient. Here's where I think things get mixed up. Maybe they forget that the diagnosis and the patient are two different things. Yes, the patient has the diagnosis, but they certainly did not choose it and are trying to make the best of it. When so much of your condition is unknown and there is little information on it, doctors can be very inpatient. I think the golden rule of treating others how you would want to be treated is often lost. It's something that is so important to a patient who has so many things against them; whose goal is sometimes to just make it through the day without having a melt-down. Since being diagnosed, which took 12 years; I have never once looked for a cure. I know it's not possible right now and don't expect anything close. I want to be listened to, nothing else. Who knows, it may make them a better doctor if they practice it.

One of the many reasons I go to a natural path, chiropractor and acupuncturist is that these are the people who listen to me. No one has to agree with me, but they listen and that is vital. They have done the reading, and are careful to take EVERYTHING into consideration, not just the symptoms. None of them have thrown their hands up in the air and given up on me; they are always willing to try something new. We all know that you can't get anywhere by giving up. I have found for myself, that taking this route has provided me with more relief from symptoms than anything else. No pill has ever been able to do any of what has been accomplished naturally, and that speaks volumes. What makes me appreciate natural medicine more than anything is that there is hope. We know that EDS is genetic and nothing can be changed about it. But, we hope that with a lot of work, paying attention to details, and trial and error living with EDS can be better. What more could one ask for?

So that's my long-drawn out rant for today, more to come later.

Tips on LIVING with EDS

Don't use crutches…nothing good comes out of them.

Keep in mind that everything is a choice, even if you don't like your options.

Don't be afraid to just "be" if you never have a bad day, then something really is wrong.

Keep trying new things until you find something that works for YOU.

There's nothing like sleeping in until lunch and having pajama days.

On a bad pain day, be sure to do at least three things you like, it helps with pain.


"If you're going through hell, keep going"
(Winston Churchill)