Sick Day

I'm on my couch missing my book club all because my body has decided to be uncooperative today.

I hope for a better tomorrow.

Here's the only thing I (kind of) write today - it's from my tumblr page:
http://riverarunsthroughit.tumblr.com/post/50359796377/maybe-im-a-time-lord

I hope you're having an awesome day!!

An Open Letter To My Insides

Dear Body,

I am acutely aware of the fact that I have not been the best owner over the course of these 36+ years, however, it would be incredibly unjust of you to try and argue that I have been the worst. The tortures that you have put me through, most specifically in the last eight or so years, seem to be a bit extreme.

I understand that you were upset. Although I am still not entirely sure for what, I listened to your qualms and I offered a number of solutions:

• Work was too much for you; I stopped.
• You didn't want to heal the eyes; I took you out of the driver's seat.
• You decided, all of sudden, that you hated gluten and dairy; I have taken both out of your diet.
• You seem to hate mornings; I try to sleep through them.
• Rainy days are a problem; I let everyone know to leave you alone.
• The sun makes you itchy; I lather you in sunscreen.
•  Sometimes showers make you dizzy; when you tell me, I don't get in the shower until someone is around to catch you.

I know there are even more negotiations we have made. Some have become so much of my "normal" that I have forgotten that they started because of your complaints.

Here's the deal: this is my life.

Sure, you are my vessel and all of that, but, let's be serious, you've developed some terrible habits. You need to pick up your game here. You need to take the sleep time I give you and sleep. When you take that time to actually sleep you need to restore yourself. When I feed you the fruits and vegetables that I select especially for you, you need to stop rejecting them and, instead, use them.

I am tired. Not just in the physical way you know all too well, but also emotionally. I am tired of your inconsistent, inconvenient temper tantrums. I am tired of your aches and pains that interrupt my thoughts, my actions, my writing, my reading and everything in my life. I am tired of stepping out of life for you.

The fact is, I love you. I mean I really, really do. I can't even imagine where (or who!) I would be without you. And I know 36 years is a hell of a lot to be thankful for, so I don't want you to think, for even ONE moment, that I am not grateful for every single breathing, heart-beating moment you have given me. In some ways I am even grateful for the tortures because they made the other moments glow.

It's just that today is one of those days, yesterday too, I guess, when I forgot about who you really were and I made plans. They weren't big plans. They weren't even the kinds of plans that involve other people. They were just my plans to get things done, check a couple more things off my "to-do" list, straighten up in and around the house, write some more words. I don't have to tell you they didn't get done. I don't even have to tell you why. I just wanted to let you know that I was disappointed.

I was hoping, if I told you, that you might want to surprise me tomorrow...

You don't have to. I understand you have your own issues to deal with. Just do me a favor, rest easy tonight. Enjoy your sleep.

Forever and Always Yours,

Nicole 

:)

Life With IIH - Inconsistently Consistent

IIH in a nutshell. (source)

Last night was a nightmare. Familiar, of course, but a nightmare all the same. I couldn't think straight, I couldn't see straight, and my head was, in general, uncooperative.Why? you may wonder. The best answer I can come up with is this: This is the frustration of one of my chronic diseases.

If you are unfamiliar with this - and, honestly, I really do wish you are - simply put when you have a chronic disease the best you can hope for is a life that is inconsistently consistent. What I mean by that is this: I don't know when my symptoms will strike (inconsistent), but, unfortunately, I know they will (consistent).  My familiar nightmare.

The worst part about last night was that yesterday was one of those days that I forgot about my conditions. I lived yesterday as close to normal as I have reached in a long while: I woke up relatively early (about 9 am), I wrote a quick post for Rivera Runs Through It, I spoke to my best friend on the phone for two hours, made myself lunch, spent about ten minutes outside with my rooster friend (I haven't written about him, yet have I? Well, here's an old rooster video!), I wrote up a post for StoryDam, I wrote my own post for the A to Z Challenge, I cooked dinner (the challenges began... weakness set in, confusion grew), I found out about HitRecord (more about this later, I hope!), I participated in the StoryDam chat... and then that's when it slammed me, during the chat.

At around 8:30pm last night everything slowed down. The slight tremble of the floor created by my husband walking around felt like an earthquake. My dog's panting for my attention was thunderous. The words on my screen started dancing. I forced my way through the end of the chat, because, like I said, it was one of those days when I forgot how bad it can get. I fooled myself into believing that I am healthy.

And you know what? As bad as last night was. I don't regret it for a minute. If I don't steal those chances to live in the dream, then the rest of my days will be nightmares. I slept until 1pm today - my dog woke me up and I swore it was still morning. I stayed in bed until almost two. I had to. I don't have a headache right now, but it is still spinning. It's not a great feeling right now, but it is familiar. I'm happy my husband isn't home right now, because trying to focus outside myself, on someone else's words, expressions, needs or desires right now is one of those things I can not do. I can hear the words spinning around in my own brain and I can spill them out here in an attempt to empty the insanity into the world to give me peace.

It's that, or sleep.

But I have things to do. I have dreams to live so the nightmares lose their power.

Thanks for reading!

Doppleganger Days

My doppleganger returned. I don't even know who she is, but she looks just like me, sounds just like me and she gets inside my head. However, she is the furthest from the "real me" than I can ever imagine.

She is sick. Not just with a cold or a stomach ache or something that can be worked around - she is bedridden. She is imprisoned by pain and her only journeys from the bed are to the bathroom.

She doesn't eat. She can not write or read or watch TV or even participate in normal conversations. Every time she arrives I am caught completely off guard.

I fight her, but she has allies within. She has somehow won my body over and I must lay in defeat as my system turns against itself. I wonder if she has never left and I only dreamed of moments of humanity, of personal connections, of health, of anything that could be perceived as progress. I wait and cry and pray that she'll leave, but have no idea how to show her the exit.

I hate her. But I can't. She is me. I am sick. I have two chronic diseases, one of them is a rare disease, and this is what life is like. Like everyone, I have good days and bad days. The only difference is that my good days are not as fantastic as a healthy person's and my bad days are so much more extreme.

My doppleganger threatens to stay for a while on this trip (this is day 3 where I find myself typing my story on the notepad in my iPhone while still laying in bed) and thoughts of hospitals have danced in my head since her arrival. But what will the professionals say? "It must be a flare up," or when I remind them of my rare condition, they'll all freeze, "Perhaps you should see your specialist."

Perhaps, if I could get out of bed I would see someone, but what can be done once a diagnosis has been made? "Yes, Nicole, you are sick. We actually told you that already. That's why you see us so frequently."

Alas, I will find my way back. I will find pseudo-healthy me again, I hope. I will be pain free for hours on end! I will be confident enough to take a shower while home alone! I will make dinner for my husband and feed the dogs! The world will stop spinning. The intestines will stop twisting. And my brain will become uncrushed.

But most of all, the doppleganger will leave my eyes alone. She can hurt me and torture me on these visits she makes, but if she dares to threaten my vision again a war will be waged at the conclusion of which I know only one of us shall remain standing.