The Things That I Forget

Lately I have been dealing with a lot of stress and health issues. My symptoms have gotten worse, but it’s the type of worse that is more uncomfortable and miserable than life-threatening or scary. But the uncomfortable really sucks and the miserable is really… well.. miserable.

But I am living my life, or rather, struggling through my life and trying not to fall from the weight of everything. It’s hard. I think at times it might even be unbearable.

But what choice do I have?

None.

Every now and then, I get a glimpse of the big picture and I think of all the things that I have forgotten about myself in order to pretend that my life is a little more normal than it really is. It’s a coping mechanism. Or denial. I’m not sure which.

So what have I forgotten?

I forget that fainting is not normal. It is not a common daily occurrence for most people. That saying “When you fall down, you have to pick  yourself back up” probably didn’t mean it literally.

I have also forgotten about my spina bifida occulta.

SBO2

Spina bifida occulta of my S1

Is it strange to forget about something like this? I have pain from it on an almost daily basis, but the pain is so normal for me that I just ignore it, deal with it, and go on with my life.

What other choice do I have?

None.

I forget that the amount of exhaustion I have is not normal. Apparently others have the energy to come home after a hard day at work and are able to make supper. Sometimes when I think about that, I am genuinely amazed. I have gone to bed before without supper because I am just too exhausted to cook anything.

I forget that aneurysms are nightmares to everyone else when they are just a normal reality to me.

But, again, I ask: What choice do I have?

None.

Forgetting is not necessarily a bad thing. Because when I remember… when I think about everything I deal with.. when I look at the big picture…

I feel as if I will drown.

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Spina Bifida Occulta

Image

(my lovely sacrum)

So I’m not sure if I’ve mentioned this before or not. I have spina bifida occulta (SBO) along with everything else. If I haven’t mentioned it before, it’s probably because I have no idea what that means for me. As is often my luck, when I get different medical tests, the unexpected shows up. So on a series of neck and lumbar xrays, I learned that I have spina bifida occulta of my S1 (I also have bilateral extra ribs on my C7…I told mother she birthed a freak…). I was told it’s just an inconsequential finding, but others have shared different experiences. I haven’t had an MRI of it and that annoys me a little. I like to know everything that is going on with my body. Simply being told that I have SBO isn’t enough. I want to make sure it’s not hiding anything from me, like a tethered cord. Also, having EDS as well, it’s very hard to tell what’s caused by the EDS, by the SBO, or is just a random ache/pain. If anyone out there reading this blog (all five of you at this point 😀 ) have any experience with SBO educate me please!