Friday, November 16, 2012

Woe is me

Today is one of those days.  This weekend is the American Headache Society's Headache Symposium in Scottsdale, Arizona and I am supposed to be there.  I had planned to be there, bought a plane ticket and registered for the conference, and then decided I was too sick to travel by myself and didn't need to try to go.  But my friends are there, my migraine friends, and they are tweeting about it and learning so much and I wish I had gone.  On top of that, my head hurts today.  So I just want to whine and feel sorry for myself because migraines kept me from doing something fun that I should have been able to do.  I promise not to feel sorry for myself for long, but just for now, it sucks.  A lot.  And I wanted to tell someone about it.

On another note, if you are on Twitter and want to follow the tweets from the Symposium, follow the hashtag  #AHS12AZ.

Thanks for indulging my little pity party.

Saturday, November 10, 2012

Meditation: I am NOT my pain

My psychologist, Dr. D., has got me trying something new.  I'm meditating, using the techniques of Dr. Jon Kabat-Zinn that are found in his book "Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness."  In addition to the book, there are some Guided Mindfulness Meditation CDs you can buy that I would recommend if meditation is something that you would like to try.

Let me just say from the start that I am not finding this to be easy business.  One might think being still and focusing on breathing would be simple, but nope.  It's really not.  Especially not when I am in pain, and the whole reason I am doing this is to try to find new ways to deal with pain.  The meditation technique taught in the book is called Mindfulness Based Meditation which is taught in Dr. Kabat-Zinn's Mindfulness Based Stress Reduction Clinic at the University of Massachusetts Medical Center.  I thought meditation was about quieting the mind, but mindfulness is more about being aware and observing what the mind is doing and thinking and feeling in that moment, and then bringing it back to what you want it focus on.  It's a very active process because the mind constantly wanders.  It's a different approach than  I expected.  It's very focused on the present moment.

The first two weeks I tried to practice with the CDs, I found it nearly impossible to focus on anything except the pain in my head.  The first CD we are to do is called a Body Scan  Meditation.  It asks you to focus on different parts of the body, and then as you "breathe through them" you "let them go".  What I get out of this is that I am slowly seeing myself as a being and not a body as I let different parts of my body go.  I am literally letting my body, and any feeling or pain associated with it, go.  However, when I have a migraine, I can't focus on the parts of the body I am supposed to, I am only focusing on the pain in my head.  (The book doesn't address what to do about this until pages 294-296, which I find wholly unhelpful.  It should address this quicker, in my opinion.)  In discussing the book with my doctor, I told him I felt as if I was supposed to treat my pain like an elephant in the room, to be noticed and then dismissed as nothing dangerous or important.  However, a migraine isn't an elephant, it's a friggin' lion that is chasing me and going to devour me if I don't give it the proper attention.  For instance, when I have a migraine, I usually have to put pressure on my head and move some to find the right position to relieve the pain.  I can't lay perfectly still as you are asked to do on the meditation CD.  So I kept shutting the CD off in frustration halfway through in pain.

Finally, I decided to read ahead in the book and see if there were any tips for when you can't focus on anything but the pain.  Luckily, in Chapter 22, there were.  For instance, what usually happens is that while I am focusing on the pain being intolerable--I am actually tolerating the pain in the present moment.  What I am really doing is catastrophizing the pain and being concerned about the future moments--because I just KNOW it's going to keep hurting.  Instead of borrowing that pain from the future, I have to focus on staying in the present moment. It's easier said than done. Also, not catastrophizing the pain, recognizing that my thoughts about the pain--such as "This is killing me," "I can't keep doing this," "How much longer can this last," "Why does this keep happening to me?"--aren't the pain itself.  They are just my thoughts about the pain.  They aren't me, they aren't the pain, they are just thoughts that I can let go of.  I am not my thoughts, I am not my pain.  

See why it would have been helpful to know that at the beginning of the practice? 

There's other stuff about accepting the pain and going ahead and feeling the pain instead of fighting it, and observing it for what it is.  Not judging it or hating it or resenting it, just accepting it.  That seems more difficult to me.  I think I'll have better luck trying to control my thoughts about it and realizing I'm already tolerating the pain now, so chances are I'll tolerate it in the future too.

What I find happens when I try to do anything quiet right now, anything where I don't  have a distraction, is that the pain that is always there but that I can usually ignore creeps in.  So as soon as I lay still to meditate--boom.  There it is.  I have found that if I can focus on my breath, relax my forehead enough, and focus on saying "I am not my pain.  I am not my body.  I am not my pain."  I can reduce the feeling of pain somewhat.  Now, when I have done this in full blown migraine mode, I have still not been able to get much pain reduction if any at all.  One time I managed to relax my face some and that was kind of nice, because I find my whole face is really tense during a migraine, but that's been about it.  I am committed though, and I am going to figure this out.

I have not mastered any of this.  You'll notice when I write about migraines I identify them as MY migraines.  Who else's would they be?  Who else can identify how a migraine can feel to me?  I am going to work on identifying them as THE migraines, not mine.  I am not migraines, they don't have me, I am not my pain. 

Have you tried anything like meditation to control your pain or help cope with illness?  What have your experiences been?

Saturday, November 3, 2012

My latest Depression drama.

So, I have been Depressed, capital D, for the past year.  I  haven't known whether to write about it or not because it's one of things that people don't really talk about, and if you can't talk about it, well, it seems you shouldn't write about it either, right?  But now, I feel like I am kind of coming out of it a little, and I want to cleanse myself of the experience.

I have something called a Vagel Nerve Stimulator, VNS,  implanted in my chest that is supposed to help control Depression.  However, two things potentially messed that up in the past year.  1) The battery went dead. 2) The wire going from the generator to the Vagel Nerve in my neck broke. So, I wasn't getting much help from the VNS.  The VNS also probably helps my migraines--although other than my anecdotal experience there is no official evidence of VNS helping migraines.  So in the past year my migraines have been worse than usual too, which also increases my Depression.  This has been a perfect storm of physical and emotional torture for me for the past few months.

So, one might think, big deal.  Get the VNS fixed.  Oh, no, my friend.  My insurance company had another plan in mind.  See, somewhere between 2005, when I got it implanted for treatment resistant Depression and 2012, when  I needed the generator replaced, insurance companies decided that there wasn't enough evidence that VNS decreased Depression sufficiently so they stopped paying for them--even for people who already had them.  So, I was looking at having a dead device in my chest that I had proof--to me and my doctors--worked in my particular case, but I still couldn't get replaced.  Brilliant.  Anyway, luckily, very luckily, because my husband's company is a self-funded insurer and they were willing to overrule the insurance company and pay for the device, I was able to get it paid for.  However, it took an almost year long fight for this to  happen.  So, now I have a new VNS and I think I am starting to feel some effect from it.  My doctor has also tinkered with my anti-depressants for the past year and I think finally has them where they need to be.

My migraines still are a mess.  So it's quite impressive that I feel like I am coming out of the Depression already given that my head still hurts 85% of the time.  That's why I think that the VNS and anti-depressants must be working, because usually, with my head like this, I would be feeling pretty desperate emotionally.  Finally though, I am starting to feel a bit more like myself.

That's the problem though, I don't feel quite like myself completely yet.  I'm no longer an emotional basketcase--which is a HUGE plus.  But I went through this long period where I just couldn't make myself care about things that I have always cared about, and I am still there.  I guess I am just wondering when that's going to come back.  I know deep down I still care, I just can't manage to make myself act like I care.  Does that make any sense to anyone but me?  I guess I have been pretending to care, acting like a placeholder for my other self.  I know when my real self comes back I will want to be involved in the things  I was doing before, so I have to force myself to do them now, but damn, it's been hard.  And I only have the ability to pretend for a little while, then I am emotionally drained and can't do anymore.  But I keep trying.  This week has been a little easier.  I at least want to be around friends again this week.  It's been hard to be around anyone until just lately.

I know I am not the only one who feels this way, so I thought maybe writing about it would let others recognize themselves or at least make me feel a little better.  And it has.  It's hard to keep things in forever.

I hope this finds you well.  Very, very well.