Monday, August 6, 2012

anniversary brain dump

otherwise entitled: Welcome to my Brain
or, otherwise known as: Brain, Sometimes I Hate You.
This month marks the One Year Anniversary since this crazy pain started. This is the month I went to my Dr, thinking for sure that since my ear had been hurting for a few weeks, I might have an ear infection. But then he treated me for an ear infection, and my ear still hurt, radiating down into my jaw and in my teeth. And thus began this fun journey of Dr after Dr: dentist, ENT, ENT nerve specialist, neurologist, neurosurgeon, pain management specialist, etc. But I'm getting ahead of myself. At first it was just the Dr, dentist, and ENT. And then after 2 months of ear/jaw/tooth pain, it seemed to go away. Then 2 months later, it was back again, along with the face pain that has now been my constant companion for 8 months. Pain in my ear, cheek, around my eye, along my nose, along my jaw and in my teeth. Every single stinkin' day for 8 months now.
I don't need to rehash the entire story. The point is just that I am sitting here at the ONE YEAR mark and I am just not happy about it. In fact . . . well, in fact I am struggling quite a bit. So I guess I thought I'd just dump some of my thoughts out on you. haha. This will just be totally random, unorganized babbling. I hope you'll read it anyway. {and the side notes in brackets are some of the intruding thoughts that try to fight through the muck, but aren't very successful. I usually just feel worse.}
I have read/heard a lot about how we need to control our thoughts, and the thoughts behind our pain bring us more pain than the pain itself, and we need to let go of negative thoughts, and turn them around, reframe, etc etc etc. Just look at Pinterest and you will find about a million positive thinking quotes, all done up with pretty fonts and pretty colors and pretty backgrounds. And it's all well and good. It is right. I don't disagree. But really, when your thoughts are coming at you like an avalanche, or a rock slide, or more accurately, a mudslide . . . I don't know how to stop them all, or look at the positive, or change them all into pretty helium balloons and watch them float away.
{and then I hear that I should change all my metaphors to be able to see things differently} yes, yes, I know.
The hardest thing is that I am fairly certain that this pain is not going to go away. It is more probable that it will get worse as time goes on, or as I age. Medications are iffy. The one I'm on now has taken me from absolute constant 24/7 pain, to pain that comes and goes, but is still present, coming and going, many many times through each hour throughout the day. And the side effects from that med have been getting worse, I think. They are pretty awful in and of themselves. I don't know if I will ever reach a state of 100% relief. And that is hard to come to terms with. I am physically tired, mentally worn down, and emotionally frayed. {realistic or pessimistic?}
I've also been diagnosed with migraines, as a separate issue from the trigeminal neuralgia pain. I'm experimenting with abortive medications for those. Since I've been tracking it, I've gotten them about 4-5 a month. And then just regular old headaches frequently too. I haven't been tracking that pain. My neurologist has me keeping a pain log, 3 times a day, rating my pain (but only the trigeminal neuralgia). I've been doing it since Feb. And I'm sort of tired of it. Really tired of it. Sick of it. But they want to see how my pain levels change with new meds etc, so I know it makes sense to do it. I just don't want to.
My children need a better mother. I know this just sounds like the trite exclamation of an exhausted depressed mom. But, seriously. This summer has felt more disastrous than much of anything else. My kids are a little out of control. And I cannot do much about it. And then I am filled with the guilt of thinking, if I had taught them better before now, before I came down with the pain issues, then things would be better now. But I have failed. And what will the coming years be like, will they hate me for being the mom that is always sick in bed? {one day at a time . . . see how my trying to see into the future makes me feel worse?}
{and have we mentioned the "what you dwell on is what you get more of" philosophy . .. or that we have brought everything into our life by our own choices, our thoughts, our intentions? So, I've done this to myself. Is that right? Is that what you're trying to tell me?}
A year ago, I was doing a mini-triathlon. I felt strong and healthy. I was so proud of myself for doing that. Perhaps more proud than I should have been. In December as I was thinking of New Year's Resolutions, or things I wanted to do this year, I was planning to do another mini-triathlon and maybe a mud-obstacle race. Then I was hit with pain that got worse with activity, medications that made me so slow and sluggish and sleepy I could barely get out of bed at all, and worsened depression from both the pain and the meds that just made everything feel impossible. Not surprisingly, I have gained weight. My clothes don't fit. I feel discouraged everytime I get dressed. I can't bring myself to consider buying clothes in an even bigger size than I have ever worn in my life. I know I need to diet to even maintain, but I just don't have the self-control when I am depressed and in pain. I hate all of this. I hate it passionately. And it just does not have the simple fix that it used to (eat less and exercise more - not that it's ever simple anyhow). I just don't have it in me. When I compare where I was a year ago to where I am now, it is almost unbearable. {but I know I need to accept my life for what it is now, today. acceptance. Oh boy.}
I have made myself exercise. I miss going to Zumba and have tried to go, even though it hurts a lot. I even went to another class - some mix of aerobic kickboxing or something. But there were only about 5 of us there and the teacher, although a fantastic teacher, was trying to push us with the pep talks "you can do better than that, c'mon you gotta push yourself, you decide how many calories you burn by how hard you work!!!!" and I imagined her eyes were settled on me as I just tried to do what I could, which wasn't much. She didn't know. I guess I could have told her. {I am probably just self-conscious and shouldn't care so much about what I imagine other people are thinking, which they probably aren't even thinking.} Oh well. I kind of hated it.
It is hard for me to be around people. It's hard if they ask how I am and I'm not sure if they really want to hear (again) that I'm not really doing too great. I'm not sure if I should lie (just a little) and say I'm fine. It's hard if they don't ask at all because then I feel like they don't care. It's hard to be around all the happy shining people who have no idea what it's like to be hurting all the time. It's hard to stay home because I don't have the energy to go out and about and deal with the inevitable lights and noise etc that are anywhere and everywhere.
Really. I can't believe I'm saying these things. Thinking them is bad enough.
And have I mentioned how talking and smiling make the pain worse? Um. Yeah. Sometimes as much as I want to talk and smile, I just don't want to put myself through it. So sometimes I may steer clear of people because chances are I just might talk and/or smile. Either that or break into tears without warning. So you see how this becomes problematic, don't you?
And then there comes the whole, "I wouldn't be given this if I weren't strong enough to handle it" or I must be learning something from this, or somethingsomethingsomething. I don't even know what to do with that sometimes. I'm not sure what "handling it" means. I'm still alive? I get out of bed? I've survived another day? Sometimes I just think, is this really a good thing? What good am I doing here?!? {and then I know, I mean a lot, more than anyone can ever express, to my husband, my kids, my extended family . . . I know. But . . . sigh. But. who am I here for? me? them? what role do I fulfill, really, right now? I'm not sure.}
Anyway. This blog post has been really long. And I've started it, set it aside, added to it, closed it several times throughout the day. I don't know what the point is, really. And what I want from it. I don't know. Do I need help? yes, sometimes. Do I want sympathy? yes, sometimes. Do I need someone to listen? yes, definitely. Do I miss my old days of happy skipping frolicking blogging? yes, more than you know. I miss a lot of things. I am grieving for a year that feels lost. And feeling frightened and panicked and unstable at the prospect of who knows how many years to come, more like this. {again, I just need to take one day at a time. One moment. I know. But I am a thinker and a planner and I am more than overwhelmed with these thoughts.}
Part of me feels sorry for dumping this on you. There is nothing really any of you can do. So perhaps I have burdened you unnecessarily with my pain. I hope that I can trust you not to be harsh with me for doing so. I hope that perhaps by scattering these thoughts out to you, you can help diffuse the pain and help carry the burden just by knowing. Just know and understand that sometimes some thing might trigger one of these thoughts, and then that "pang of sadness" becomes like "the engine of a train, pulling all the other sadnesses after it" (paraphrased from Belong to Me, by Marisa de los Santos). I will try, in time, to help my brain keep one thing at a time and keep the mudslide at bay. I will try. Then the negative thoughts will be like balloons, I can hold in my hand, and accept and appreciate, and let go.


liz b. said...

Kristen, I'm so sorry to hear that you are struggling. I wish I could say or do something to make you feel better. I don't know what its like to be in pain so its hard to understand what you are dealing with, but I think you are a fantastic mother and that you have a wonderful family and you are doing the best you can. I hope that a year from now you will be able to look back on this and be in a better place than you are now.

It's not easy to control our thoughts and inspirational catch phrases like the ones you mentioned are easier said than done. Have you considered taking classes for meditation? Maybe that could help a little bit? I've heard really good things about Transcendental Meditation but I think its pretty costly to learn how to do it (but maybe it would be worth it?). I don't have any personal experience with it but just thought I'd throw that out there... There's pretty good evidence that it can be effective for pain relief:

Thinking of you and hoping that relief from your pain will come soon. Hang in there. Love you. ((huuugs))

Jennifer Pelo Rawlings said...

Pain sucks. I'm so sorry you have to do this. I was thinking about it the other day, about being in pain all the time. The conclusion: It's not good. When I am in pain from an injury or from being sick I am not fun to be around. I have no patience, strength, good will, drive. I basically hate it.

I know of a lot of alternative therapies you could try if you are interested. I was raised in a holistic healing world, no drugs or doctors for me. It wasn't always great. I try to live in both worlds now. I use oils and herbs, but if I know a painkiller or antibiotic can do the trick and I don't have the strength to fight it myself, then I take them, no doubt. Just like dealing with kids there isn't one thing that will work for everyone. There's no quick fix, cure-all, but you might be able to find the one thing that works for you. Let me know if you want some recommendations.

Also, this trial may not be for you. Sometimes we struggle to allow other people to learn things they need to learn. That doesn't help to know, it still sucks just as much. My mom was sick while I was growing up and I learned some great lessons from it. It was stinkin' hard and unfair while I was in it though.

I love you and I do care and I'm so sorry I can't fix it for you.

Davis and Carter's Mommy said...

I don't have any answers, I just want you to know that I am listening, and praying. Do they have any online support groups for people with your condition? Just wondering if others who have been there might have thoughts to share.

Colleen said...

See, we're still reading and listening, if nothing else. I wish there was something I could do. I think about you. I pray for you. I hope this is just a ridiculously hard period in your life that will go away and leave you with an incredible sense of how amazing life without pain is. But if that isn't the case, I hope you will continue to get through it the best you can. Either way, I hope you know there are lots of people who love you and think about you and pray for you.

Ashley Case said...

*Sigh* I know. I totally do. I've been exactly there. My heart is breaking for you. And I remember that one year mark, and the two year mark. By then I was just ANGRY that I still had to deal with it. Anger doesn't make a very good mom, by the way... I pray for you constantly. I wish I could help. If you need someone to just listen, please call me. PLEASE! Or come by if you're up to it. And you will get to a bad place and think, "It would be nice to talk to someone." And then you will think of me and think, "Oh... that might be awkward. No, I think I'll pass." At that point, you better laugh at yourself for doing exactly what I said you would do (but not too much to avoid excess pain) and then you will pick up your phone and tell me all about it. :) I know no one can really help right now, but I also know that it would have been wonderful to have someone listen and sympathize and tell me I wasn't worthless or crazy while I was going through it. Also, Pick up a project like cross-stitch that is inexpensive, easy to learn, and comes with a finished product. Don't plan on finishing it; it's just something to do with your hands and to see progress in something. Love ya! Thinking of you!

Anonymous said...

As one who overthinks I empathize. Be gentle with yourself. The last year feels huge but it is a smaller percentage of your total life or your children's lives. Take care. Xx

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