Dear Body,

It's been a long road already. We've had our ups and downs. I'm sorry that I never cared for you much. I was young and stupid. And now... Well now, I'm usually too tired to take of you the way I should.

Thinking back when I was younger and would starve you.. I wanted to be thin so badly. I know I already was. And it wasn't your fault body. You didn't deserve that treatment from me. I'm sorry I was anorexic. I'm sorry I made you struggle. I was just struggling so much inside. I just couldn't see what everyone else saw. Honestly, I still don't. I still struggle with this today. But I know that its just me. It's not you body. It isn't your fault. So I'm sorry that you are starved now because you can't work like you should. I often wonder of its my fault for damaging you or just the disease that's taken over you. So, seriously. I'm sorry.

I'm sorry that overworked you. I didn't know my joints were so unstable. If I knew, I would have been more careful. You see though body, being born that way, I didn't know I was in a different body than all the others until it was too late. I'm sorry that you struggle so much to keep me together. I really didn't know. And trust me, I feel your pain. Ever single day. I'm suffering with you.

I'm sorry that I didn't exercise when I was able to. I thought there would be more time. I thought "I'm young. I'll exercise when I'm older and need to." But that was selfish. And now you suffer because of it.

I'm sorry that I took you for granted. I'm sorry that I never appreciated all the complex processes you did every day. And now they are gone. Digestion, proprioception, balance, coordination, eye sight, hearing, sensation of touch, breathing, all of that and more. I took you for granted. See body, I never had to think about those things. You thought about them for me. But now, I know you can't anymore. And it must be frustrating for you. I know it frustrates me.

And while I go through all the emotions of having lost your ability to take care of me, I'm reminded that I didn't take care of you. But sometimes body, I really hate you. And it just isn't fair to you. I know that. I know you tried. I know you struggle every day. I know its the disease and not really your fault. But I still hate I'm stuck in you. I hate that I don't see what others see. I hate that now starving isn't a choice I'm making. I hate that I'm hungry but I can't feed you. I hate that I walk into things because you can't see or know where the rest of you is in time and space. I know you're probably just as scared as me.

I know it body. And I'm sorry for all of it. I'm sorry that I didn't love you the way you loved me. And I'm sorry that I hate you for being sick. I try to love you. I really do. It's just so hard.

I just wanted you to know that I know. I know I hurt you. I know I was selfish. And I'm sorry. I'm sorry you're broken.

It's Not You, It's... No, It's You...

Relationships are such a struggle being chronically ill. I don't just mean romantic relationships. I mean all relationships. Friends, romantic partners, family, work... All of them.

Relationships are hard. If you're healthy they still hard. They take a lot of work. When you have a chronic illness, they become even more difficult.

I have one friend. That's right. Just one. Singular. Friend.

But she is the best friend I could ever ask for. And why do I think that is? Because she is chronically ill too.

I know other people. And we talk sometimes. But I don't really consider them friends. They are more than aquantinces but less than friends. I don't know what to call them...

Its so hard to explain to people that aren't sick like me that I have to cancel last minute. Or if they drive an hour to see me, I just want to sit and talk. I like to be active, but my activity level changes quickly. And so does my pain. So if we have plans to go out and do something, and then by the time they get here, I can't do it anymore, people that aren't sick don't understand.

Its hard to explain that to people that don't or have never experienced it. Probably the only I can think to explain it is when people break their arm or leg or whatever. And they have a cast. And they can't go and do whatever their friends are doing. They get left out. Their friends leave them and go have fun. But our "broken bone" in this analogy doesn't ever heal...

People start to leave you out. They stop inviting you out. They leave you behind. And honestly. I totally get that. If I were a totally healthy person, I would probably do the same thing. I wouldn't say I got better miraculously now. But before I was sick. I was that person. It just makes sense. Biologically it makes sense. We have a desire to be with people similar to us. It just is the way we are. So while I think it sucks, I can't really fault them for it.

People will have the best intentions and say they will be there.. And I believe they do want to... But you lose that commonality with people.  And it's hard to explain to them what's really going on...

This is just about friendships though. It makes romantic relationships harder too. Romantic relationships need a lot of give and take. And when you hardly have the energy to get a shower, it's hard to go out f your way to do things for your partner. And often those fail too.

It takes a special person to be prepared and to love enough to be with a chronically ill person. And I know that sounds like an excuse for those that aren't strong enough. But it's not. Its just reality. And sometimes, reality just sucks.

How many of you have lost friends or relationships because of your chronic illness?

Anyone out there like me that lost all of their healthy friends in the battle? Share and comment below.

What Is Normal Anyway?

I really hate that term. "Normal." It seems like it means nothing these days. To people, to doctors, to individuals. It's just a bullshit word.

When I first found out that I had EDS, I was blown away with how 'abnormal' I was. I mean, it is normal for me to do the things I do. But it isn't normal for others. I once asked someone if their toes bent backward like mine do. There genius answer. "No. But every one is different. So who is to say that isn't just normal for you." Normal for me. Exactly! But isn't that part of the problem!? I mean, if it's normal for me, but not for the other healthy portion of the population, then that means I am are abnormal. Right?! And I don't think being abnormal is a bad thing. In fact, in this case, I think it's a very good thing. It's good because it means my symptoms and my pain and my EDS is real. It means there is something different that makes what I feel real.

But then when people diminish that by saying "Oh, well it's not abnormal, just not normal for me", I feel like it belittles my diagnosis. It belittles my pain. It belittles me.

If were the only time it's happened, I don't think it would bother me, but it isn't.

My cardiologist was telling me how healthy I am and yada yada during my stress test, that I felt the need to set him straight. I am NOT healthy. And that is a fact. I have a bunch of random health issues. But I chose to tell him about my EDS and Chiari. He didn't know what Chiari is, and that's fine because he is a cardiologist, not a neurologist or neurosurgeon. They need to know to different things. Cool. But when he challenged my EDS diagnosis. NOT COOL! He told me I need to beware of the diagnosis. Because one doctor will say you have something, and you get it in your head you do, and then he can't convince you they are wrong. RIGHT. Because you know all? Obviously not, because you don't know what Chiari is. So he then asks me if I can touch my thumb to my forearm (part of the Beighton Scale). So I answer in demonstration.

Obviously I can. Right. So I thought that would shut him up.
But it doesn't. He then tells me, "Any martial arts teacher can do that." Seriously?!? That doesn't mean it's NORMAL! AAAANNNNNDDDDD!!!!! Those people have to train to do it! They have to slowly push their ligaments past where they should go to slowly stretch them out. Like yoga instructors. But I don't. I just am this way.

See the difference? I do!

But he didn't. And it bothers me.

It bothers me when doctors diminish my 'abnormalness' and when normies diminish it. It just bothers me!

In this case, not being normal explains so much. It's like a piece of me. It's part of what I am. I have EDS and that makes me abnormal. And I'm okay with that. I'm glad it has a name. I'm glad there is an explanation for my pain. For everything. Getting that diagnosis explained sooooooooooo much!!!!! A lifetime of random things that never made sense. A lifetime of being different and not knowing why.

Anyone else feel like their abnormalness is important to them? Am I alone on this one? Comment and share below!

Don't forget! Only 10 more days for the EDS awareness shirt! Click HERE !!!