Isn’t it ironic

Well, I think it is anyway.

I start a blog about life with a chronic illness: good and bad, weird and fun, only to  be incapacitated for the next week due to my chronic illness.

Tonight was a bad night.

Ehlers-Danlos is an interesting enemy to fight and one day I’ll explain it better. Tonight I just don’t have the heart to do so.

I was sitting on my couch trying to focus when my shoulder and two ribs went out. I’m still not sure what it was that I did to end up in such a state but here I sit 8 hours later finally in enough control to function slightly again.

After getting my diagnosis, I realized that nights like this would become a part of my reality. EDS has no cure and I count myself blessed that nights like this are still few. However, one thing I doubt I’ll ever get used to is the crushing feeling of letting people down and becoming a burden to those I care about.

I’m sorry to start this blog off with such a sour note and perhaps I’ll post a fun youtube video or something later to make up for it (and cheer myself up). The fact is I had four friends over when this happened and all I can see is the trouble my injuries caused.

My one friend wasn’t sure what to do and I don’t blame him. I knew he was having a rough night and that was why he was over.

My boyfriend was sweet and reminded me he wasn’t going anywhere but to see the pain in his eyes, knowing there was nothing he could do to change my fate tugs at my heart too. Not to mention that some part of my brain always whispers the fear that one day he may become tired of my limitations. I wonder how many chronically ill daters struggle with this fear?

My third friend was helpful. She’s known me long enough to check my joints to see if they’re aligned and let me know when they still need realignment. I don’t always like what she says but I know she’s right.

The problem was my fourth friend. I know he was concerned about his wife and the time but to see the impatience and hear it in his voice made me cringe as I felt my presence was creating the need for sacrifice. That my being was the reasoning for extra effort and care. In essence, I felt like a burden in my own home. It’s not the first time I’ve felt this way but I wonder if it will ever lessen or if it should get easier?

I know on one hand it could get easier. My worth is not determined by my illness but by my being. I am not disqualified because of a faulty gene. Sometimes, however, it can be hard to believe this in light of the contradictory messages society loves to throw.

At the same time, I don’t think those moments of feeling a burden should get easier. Hear me out. The fact is, it’s only going to get easier to deal with these struggles, whether you’re disabled or not, as you become more secure in yourself, like I mentioned earlier. For these feelings to become easier while still wrestling through these feelings runs the risk of allowing oneself to accept the label of burden into one’s identity. That’s something I can’t accept for another person seeing their intrinsic worth and hopefully one day I’ll be able to say the same thing about myself.

Hmm, think I’m going to go pay YouTube a visit after all

Hello World, I’m here :)

The sky is falling.

Just kidding. No really, although life often feels that way and that’s why I’m here.

I’m a zebra. I have a chronic and rare condition which makes my life complicated in a world that attempts to urge uniqueness while channeling conformity. As a result, I get confused, often. I also get depressed, anxious and a bunch of other words which make counselors salivate. I know, I’m studying to be one 🙂

The point of this blog is escaping to reality. The fact is my life is shaped by my illness but I am not forced to live out an illness. My hope is that this blog with become a place of information for my condition – current diagnosis is Ehlers-Danlos and Raynaud’s although others may be pending, as well as information in general.

Also, since illness can be overwhelming, I hope to post fun things as I find them which bring joy or thought to my everyday.

So, for those stopping by, thanks for coming. For those who choose to come along for the ride, hop on, hold on, and Carpe Diem.