Waiting for my real life to begin
I’m not going to wrap this up in flowery language or pretty prose, I am struggling.
Floundering.
Drowning.
This week has been the toughest in a long time, for a wide variety of reasons. I’m not sleeping well at all. No matter how well I wind myself down or how early I climb into bed, I cannot sleep the whole night. It’s already tough to get up at 5:30, it’s especially tough getting up at 5:30 when you finally fell asleep around 11 and then got up at 12:02, 12:46, 1:36, 3:04 and about 12 other times between 4 and 5:30. I am not a cat, I need more sleep than that.
Sometimes I am surprised by how much energy it takes to live in pain. I feel like I’ve run a marathon, when in reality, all I’ve done is sit in a desk for a few hours. My head pounds, my vision clouds, my concentration slips to nothing. Earlier this week, I forgot my address. MY ADDRESS. This afternoon I forgot the 4 digit code to my sister’s condo. I can still remember my kindergarten best friend’s phone number, but suddenly my address won’t stick in my brain.
Simply put, things just seem exceedingly difficult lately.
I crave normalcy like it’s oxygen. I want to be pain free so much that it (ironically) almost hurts.
I feel like I’m being betrayed by my own body. Everything I’ve read (and that’s A LOT) says that most people with spinal fluid leaks eventually normalize on their own, that their body figures it out. That it’s self-limiting. And it makes me wonder why everyone else’s body can fix it, and mine cannot. It’s been greater than 8 months now, it’s been 6 since we figured out the problem. And still, daily, endless, sometimes excruciating, pain.
It makes me wonder how this even happened in the first place, how I drew this one in a million card.
Why me?
I struggle with that question a lot. I know I shouldn’t ask, I know that there are better things to spend my time wondering about, but I can’t help it. I wonder if I deserve this, I wonder what my penance should be to make up for whatever horrific sin I must have committed. I wonder exactly what I need to do to get out of this particular circle of hell. I do my best to keep moving forward, to not give up everyday the way I want to. But it’s getting more difficult by the day, the hour, the minute.
It’s become a tremendous challenge just to live, let alone succeed at anything.
Everyday I wake up and hope that it’s the last day, I hope that it’ll get easier. But it never does. It never gets easier to greet the day with a headache. It never gets easier to try to learn and master new information with terrible pain. It never gets easier to watch my peers living carefree lives, painfree lives. It never gets easier to know how much of my life I’m missing out on.
And most of all, it never gets better.
8 Responses to “Waiting for my real life to begin”
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Welcome! I'm Katie, a 28 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to being a doctor's wife. Sit down, get comfortable and stay for a while.
I am so sorry. I pray it will balance out soon. Pain sucks.
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Simply, I agree with all you have said. Oh, I could remind you that even with pain you still manage to bake cakes, you still manage to get A’s and B’s in really, really difficult graduate classes, you still manage to go to weddings and celebrate holidays, and do so many of those normal things.
You just do them with pain.
And pain hurts. I know that. Oh, yes, I know that. And it can cloud issues and dull senses and chip away at your hope and start to break your spirit.
And when you start to think that you don’t even remember who you really are, it hurts on all new levels, terrible levels that destroy beliefs, dreams, plans.
And then it is 5:30 in the morning and you get up, you go to school, you get A’s and B’s in really, really difficult classes. And you bake cakes.
And you do all the things you do because you want to create your dreams even when your reality makes it so hard.
And, darn it, that IS you. Fair or not. Easy or not. You do it because it is you to do everything you can to make it better.
Even if it’s not.
And someday, you will have to tell me what flounding is? :-0
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Katie Reply:
April 8th, 2010 at 9:55 pm
Hahahahaha.
I should let that typo live, just as a testament to how horrible my mind is working right now, but my pride is too great for that. And my mom was an english teacher. It goes against my entire upbringing.
I kept wondering why Safari underlined it. I was like, floundering is a word!
DUR.
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Is your pain able to be controlled with medication, or are you withholding the medication in order to be able to think clearly and achieve?
Just saying, I’d want someone to deal with the symptoms now and get rid of the pain, then worry about the cause later. If that made me babble like a delerious fool, well, nobody has to listen just let me go on.
I wish I could cobble together some kind of a massaging hat for you, to rub your scalp. You could wear the hat to distract yourself from the headache. Could you try sitting with your feet in a spa or better yet getting a massage of feet and head and neck (gentle)? Time soaking in the tub? I sit in a hot bath in the middle of the night when I can’t sleep, it relaxes me.
So go and soak yourself? It mght help relax you.
Warm regards, @terrifik
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I wish I could do something for you to take this pain away. {{{{HUGS}}}}
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I ache for your pain. I am truly sorry for how you suffer. My sister is a chronic pain sufferer as well and I have sent her a link to your blog. I wasn’t sure if it would encourage her or depress her. She was encouraged. So, thank you for sharing your struggle. What I am curious about though is why your education is of such importance at this point? Would it not make some sense to take a break until your body reaches a state of tolerance to the leak? You seem so fragile and on the edge of a complete breakdown that it doesn’t seem worth it. Life first! Then the goals can sort themselves out from there. Perhaps I’ve missed something in your blog that explains this and I do understand yoru desire to “not let this get you” but sometimes you have to concede a temporary truce.
Take great care of yourself! Do what it takes to work towards wholeness.
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Me, too, hon. Me, too.
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I ache for your pain. I am truly sorry for how you suffer. My sister is a chronic pain sufferer as well and I have sent her a link to your blog. I wasn’t sure if it would encourage her or depress her. She was encouraged. So, thank you for sharing your struggle. What I am curious about though is why your education is of such importance at this point? Would it not make some sense to take a break until your body reaches a state of tolerance to the leak? You seem so fragile and on the edge of a complete breakdown that it doesn’t seem worth it. Life first! Then the goals can sort themselves out from there. Perhaps I’ve missed something in your blog that explains this and I do understand yoru desire to “not let this get you” but sometimes you have to concede a temporary truce.
Take great care of yourself! Do what it takes to work towards wholeness.
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