Fix the Brain, Not the Body

I went to the rheumatologist today to do three things: 1) get set up with a new doctor, 2) talk about adjusting my main medication, and 3) ask about the current knowledge regarding fibromyalgia.

I like this doctor. He asked a lot of probing questions, such as "if you think you are having problems with mental acuity, why are you here rather than seeing a neurologist" and "who told you that the gabapentin might be causing such a problem." I figured these were good questions because firstly, I never even considered seeing a neurologist because the lack of mental acuity has gone on for so long (although it seems to have been getting worse, but then the last few years have been extra stressful) and I haven't seen any other odd neurological signs. At least none that I'd peg as such.

As for the second question, I told him that it had been suggested by friends who are or have been on gabapentin and found that this is a possible side effect. it has also been suggested by mental healthcare providers, too.

He was curious about everything dealing with my health, including my mental health. And then he gave me great insight into his interest in my mental health (and I really should have made this cognitive leap). The current understanding is that fibro is not a body problem at all: it's a brain problem. Specifically, it's a brain chemistry problem. And that is the center of the entire fibromyalgia universe.

It's why all the currently approved meds for fibro are brain-related rather than body-related: gabapentin, and its cousin Lyrica, are originally anti-seizure meds; Cymbalta and its cousin Effexor are anti-depressants that are both serotonin and norepinephrin re-uptake inhibitors; and a final medicine that I didn't get written down in time so I've forgotten the name, is also an anti-depressant. Doctors are trying to regulate fibro and its symptoms by manipulating brain chemistry. it makes sense.

I knew already about how fibro was considered a neurological disorder rather than a joint/muscle disease, and that gabapentin was an anti-seizure medicine. The point of using it is to quiet the brain impulses or transmitters or whatever is going wonky (yes, it's a technical term; why do you ask?) in the brain.

Wet

Friday evening, my friend Skye (I know, right?) took me to her spa for a hydrotherapy evening. She has a membership to the spa that involves use of the hydrotherapy pools and massage. She gets one or two guest passes a month and asked me if I wanted to come with her this month.

The hydrotherapy set up consists of two pools and two saunas. You start in the hot pool. Then you move to the wet sauna where you scrub your body with salt (and you sweat and try to breathe the hot wet air). Shower off the salt, then out to the cool pool (which feels quite cold after the sauna), and finally to the dry sauna with cedar ledges. We did two full circuits, separated in the middle with a sit in the quiet room with tea and cookies, and then a final soak in the hot pool. Afterwards, I felt soft, smooth, loose, and relaxed. It was one of the most wonderful experiences I've ever had.

And we talked. We started out with the basic "what have you been doing lately" and, as we were there for nearly 3 hours, it just kept going deeper and wider.

I can be a chatterbox, especially if I'm feeling anxious or self-conscious. I realized later in the evening that I had forgotten my afternoon dose of Xanax, so that probably contributed some anxiety, but also I am still getting to know Skye and I am fairly insecure about my ability to make friends. Plus, I like Skye and want to create a solid friendship with her, so there's a little bit of anxiety there. (Hi Skye! I know you're there!) Because I know about this chatterbox behavior of mine, I remembered from time to time to specifically ask Skye about herself and to listen closely. Sometimes when I am in full-out chatterbox mode, I can forget to let the other person participate. I even apologized for babbling at the end of our hydro time, partly because I wasn't sure if I monopolized the conversation and partly because I was often chastised for talking too much as a child, sometimes by my parents and sometimes by teachers.

One of the topics that came up started with a discussion of fibromyalgia. In general, experts say that people with fibro should avoid exposing themselves to extreme temperatures. However, I enjoy heat a great deal. The few weeks when I went to a therapy pool for my fibro, I was completely grossed out by the body-temperature water. It felt dirty or greasy. ::shudder:: Heat doesn't seem to hurt my fibro any.

Victim Thinking

One of my more persistent issues is that of victim thinking. When  that is the way I am thinking, I feel powerless and hopeless. For example, when I feel tired, I generally don't do anything, feeling "too tired to do anything" and like my only option is to give up and do nothing. Or when I am approaching a problem or a project in a certain way and it's not working for me, I feel like I have no other options. Victim thinking makes me feel like I have no choices.

My therapist can basically tell when I'm caught in victim thinking just by my body posture and my voice. (Yeah, not going to take up professional poker any time soon.) Then we talk about how there are other ways to approach a situation differently, that I do have choices and options other than what I feel stuck with. That's powerful, active thinking. It's definitely the kind of thinking that uses the cognitive therapy techniques I've been working on.

The problem is that I've engaged in victim thinking for such a long time that it tends to be my default way of thinking and I still too-easily forget my cognitive techniques. One reason why I still need a therapist: to help me remember to use these techniques and to detect when I am engaged in victim thinking.

I've been caught up in victim thinking for a while since I've been in Seattle. I've grown more and more tired and sleepy since arriving here, so I sleep and don't accomplish the things on my to-do list. I haven't started looking for work and I've been here for a month and a half! I've been feeling unwell off and on and my fibromyalgia has flared up. So I've been thinking things like "I'm too tired to start an online job search right now; I'll take a nap first" and "I don't feel well enough to take a walk" and "My body hurts; I'll unpack later." So I haven't unpacked or started job searches or taken many walks. Then I feel stuck and tired and overwhelmed and ashamed, which thoughts just tend to spiral in on themselves.

I do have moments of powerful thinking. I wrote about them in my last post. I know what to do, what I need to do, what I want to do. But I let my old pattern of victim thinking and non-activity rule me, thus I don't do these things. This is not how to create the life I want. This is not how to be happy and contented.

I need to continually remind myself to check in on my thinking and self-talk. To do this, I need to have an easy way to remind myself. Wearing a rubber band on my wrist has worked in the past; I don't even need to snap it to encourage behavior/thinking modification. Just wearing it works. But I'm not sure where the ones I had back in Houston are right now. Of course, if I unpacked a few things, I might find them. Or I could ask my housemates if they have any large, wide rubber bands (I like them to be a little bit loose). *grin*

Slow Maelstrom

That silence you've heard for the past week and a half was me resting, sleeping, and surfing on the interwebz. You might have heard some snoring, too, from the sleeping. My mind has kind of been like that empty, static-filled screen you see in the middle of the night on some TV channels.

So I'm here, in the Seattle area, and it's kind of weird. I still feel like I'm visiting, even though I oversaw the movers when they put all my stuff in a storage unit. Part of that is because I'm staying in someone's guest room, I'm sure, and some of it is because those times when I have been here over the last dozen years I have been visiting. I need to change my mental framework.

I'm very glad I'm here. I'm also kind of weirded out by it. Many thoughts and feelings have been swirling around inside of me: happiness, exhaustion, stress, anxiety, surrealism, expectations, trying to not have expectations, positivity, fear, and today I'm having some fibromyalgia pain, which I think is partly a delayed reaction from all the stress I was experiencing just getting ready to move. Everything has been swirling slowly, probably due to the exhaustion, for which I am grateful. I couldn't handle vertigo too right now!

The weather has been quite a bit cooler than I am used to. Colder, really — in the 50s during the day. We had a lot of rain and gray days my first week, but we've been having some simply glorious days recently, with brilliant blue skies, puffy white clouds, spring greens, flowers and flowering trees in all colors. These are the days that almost make you forget about the rain and the gray.

I remember when I first moved to Houston: one of the habits I had to wean myself off from was always taking or wearing a jacket or at least an overshirt with me when I left the apartment. Well, I changed that habit and got very comfortable going outside in just a tank, shorts, and sandals. Now I'm in the position of having to reverse the process! I'm underestimating how much I need to wear to be warm enough, usually by a thin layer (think an undershirt or camisole). And I don't always bring a rain jacket when it looks like rain (which is often). I need more weather-appropriate shoes and probably another jacket or vest or two. My BFF says I can borrow his sweaters until I can buy more of my own, which is nice. I really need an income so I can buy these weather-appropriate clothing items. I'm just hoping that I can make enough of my Houston wardrobe work here in Seattle enough of the time so I don't have to buy an entirely new wardrobe, which is more or less what I did in Houston.

Days 5 and 6: Almost There!

Tonight I am so tired I hurt. I also hurt from being in the car so much. I think my fibromyalgia is playing into both the tired and the hurt.

So I'm not going to write much. 

Yesterday we spent most of the day in Joshua Tree National Park and so didn't get as far as planned. However, tonight we are halfway from last night's hotel to Seattle, so that's good. We've had to put in a little extra time driving, as we will tomorrow, but it will be worth it. I have no idea yet how my pictures from Joshua Tree turned out, but I will share them in the pictures blog post.

Tonight we are in Yreka, CA. For those who don't know, it is pronounced "why-reek-uh". Possibly because there is also a Eureka, CA. We encountered a fair amount of rain and clouds today and tonight we are at almost 3000 feet above sea level and it's in the mid-50s. Brrr! Tomorrow I will be wearing the warmer clothing I packed. No more shorts or thin tee shirts for me for a while!

My body doesn't travel well and it gets all discombobulated. I'm down to eating yogurt for dinner because that's all that sounds good. I felt lucky that there was a crockpot full of oatmeal at breakfast this morning. I felt rather queasy much of today. But I'm feeling better tonight. I am currently in bed with the computer on my legs. I'm going to post this and then probably go to sleep very early.

I am glad we are almost done. I am also extremely grateful that Steve flew down and has been helping me drive my car to Seattle, even if we have wanted to push each other out of the moving car from time to time. I've probably gotten some good pictures here and there and it's been cool seeing things that I haven't seen before, or haven't seen in four years. I'm excited about getting back to Seattle, and I'm looking forward to seeing my "family members". I'm also looking forward to a good and stable internet connection and sharing with y'all pictures from my trip.

Talk to you again soon!

Paying Attention

So I wrote in my last post about how I was doing a set of exercises Every Day, even when I didn't feel like it. And basically, that is true. Until today.

Today wasn't the same as the "I don't feel like it" mornings. I woke up achey and sore and very, very fatigued. I argued with myself about whether or not it was the fibromyalgia and should I give myself a break or not. I finally decided it was probably the fibro and gave myself the day off from everything. 

I rested. I read. I napped, which I have not been doing every day anymore. And I don't hurt now except for a small headache (possibly from reading a long novel on my iPhone). I don't feel fatigued. I feel better. So I can look forward to the exercises tomorrow. Already some places on my body are more toned and stronger. Of course, to get rid of my belly, I'm going to have to eat better and get some more cardio, both of which are things I'm going to be doing in the near future.

I don't look at today's exercise break as a fail. I look at it as just what my body told me it needed. I can't forget that I have physical limitations, even mild ones, or I will think I'm failing every time I take care of those physical needs. Listening to my body is a behavior that is just as essential to my well-being as listening to my self-talk is, so I look at doing so, and not beating myself up about it, as a win.

Paying attention to myself and my needs is what I'm going to therapy and reading books to learn. It seems to be working.  :)

Progressive Thinking

I'm making progress! My therapist sat there this week and told me what a delight it was to watch me change how I was speaking about something, midstream, from using passive or victim-like language to strong and rational language. And how she'd been seeing this more and more the last several sessions.

We talked in our last session about how to break myself from identifying with depression and anxiety, something I do because I've dealt with them for so long they seem like something I just am. Well, I am not depression and I am not anxiety and I'm going to approach them the way I approach the fibromyalgia, starting with changing from saying my depression or my anxiety to the depression and the anxiety. None of them are me, none of them are who I am, they are simply disorders or illnesses or enemies that I struggle with, that try to keep me from being the energetic, creative, active person I truly am. I am now externalizing them rather than internalizing them.

Who would think that a small word change like using 'the' instead of 'my' would make a difference? But it does. How's this for an example? My depression makes me tired and sleepy versus The depression causes me to feel tired and sleepy. Using 'the' distances the depression from me, which cognitively allows me to add the extra words in the second sentence because they enhance the sense of distance. And if I only feel tired and sleepy, I don't have to give in to the feeling.

There is also the power aspect. As my therapist put it, the depression and the anxiety are the enemy and I have more power to fight them when they aren't part of me. My anxiety can control me; it's in charge and it's big. The anxiety is just a thing I experience and I, as I am learning to manage my emotions, am developing the ability to choose how I respond to it. 

It's freedom and it's in reach. Instead of being controlled by how I feel, I am learning to control what I choose to do in response to how I feel. The SOS Help for Emotions book says "manage your emotions or they will manage you." And I'm learning how to do that.

I've always before not done something if I didn't feel like it or done something else because I did feel like it, but always how I felt determined what I did. I basically knew that wasn't really the best way to do things, but that didn't change how I did what I did. Now I have very real proof that I not only don't have to live that way, there is a better way to live and I can do it. I'm still having difficulties with doing things I don't feel like doing, but as I'm making progress with my thinking, I'm making progress with my speaking. Next I'll be making progress with my behaving. And that's what cognitive-behavioral therapy is about.

"I think therefore I am" may be enough for some people, but for me, I think I'll choose "I think therefore I do."

Alone in a Crowd

I'm not where I said I'd be tonight. Instead of being at a very large event for a birthday party, I am sitting at home. 

Why am I sitting at home? Well, two reasons, and then a third, which I just figured out. The first two are my introversion and my fibromyalgia. I'd worked through my introversion and decided I would go because I know a handful of folks who will be there. I figured I had that one beat. But maybe not, because my fibro flared up today, all along my left side, down my back to my ankle. Coincidentally (?), it is my left arm that I decorated with the temporary tattoo that came with the invitation (a cool brush-stroke dragon with a heart inside). Most likely, the stress of contemplating this event kicked up my fibro.

The third reason is related to my introversion: I am tired of going to big events alone. Generally, if I go alone to these things, even if I know several people, I still end up wandering around alone while others are with their significant others, their particularly good friends, and so on. I either play tag-along and feel awkward or I stand or sit uncomfortably and watch everyone else go by. I realized this after I decided not to go (and I'm waiting for the fibro to unflare but it hasn't gotten the memo yet).

There isn't anyone at this soiree who I have socialized with much if at all — most I know through my volunteer work. I would like to get to know them better, but it won't happen at an event like this. Most of them either have kids and will be staying close to the children's activities, or they are older and very outgoing and will be talking to dozens of different people as they mingle.

And I, outgoing only under very specific circumstances (and these are not those circumstances), would be wandering on my own, or having those quick little chats with those few people I know before they saw someone else they know that they haven't seen in ages and have to go talk to.

It comes down to the fact that I don't have a good time at large parties where I know few people and I don't have anyone of my own there with me. So I'm going to stop saying "yes" to such events because I hate working myself into such a state that my body has to step in and say "now you can't go" before I'll allow myself to stay home.

I'm not going to become a complete hermit. I'll still go to some professional networking meetings. I'll even go to smaller events where I know several people. But as of now I am giving myself permission to skip the big events that offer no enjoyment to me. I no longer have to think about my decision, which simplifies my life some (I don't get invited to too many of these things). And not having to think about my decision validates my sense of what is right for me. 

I hope everyone else at the party, which started about 20 minutes ago, has a very good time, and my birthday wishes go out to Donna who turns 60. She sure as hell knows how to age well!

Emotional Pinball

I feel like my emotions are in a continual pinball game. Some places are lit up constantly, and pinging, pinging, pinging. Some places never light up, never make noise. The noise is constant, the stimulation is constant, and I don't get a chance to rest, to look away, because the next ball is in play and I have to keep it going for as long as possible. I don't know what will happen if I don't, but I fear it won't be good (my go-to thoughts and emotions are generally negative).

It's exhausting. As an extreme introvert, this much stimulation tires me even on an occasional basis. On a constant basis, well, I have fibromyalgia.

So I sit each day, finding concentration difficult, a constant pinball game playing in my head, wondering why I have so many difficulties getting it all together.

I think that the solution would be to just stop playing the game. Unfortunately, it's gone beyond my control and it plays itself. So now I have to figure out how to make it stop itself. Along with all that other stuff I'm doing to my mind.

Do you ever feel like your mind is a pinball game, or a thunderstorm, or some other powerful, highly stimulated state? What do you do when that happens?

Who Am I?

I was chatting with my BFF recently about the whole damned mental health issue:

Me:  Why does getting better mentally, at least for some of us, have to be like learning to walk again after getting a leg shot off, or getting a spinal injury? Why can't it be like getting over the flu? Relearning to think differently is a long, difficult, sucky, unpleasant prospect (and probably just as bad to do).

BFF:  Because it is much like learning to walk, or walk right.  For some of us, it's not "again".  This crap has been normal for far too long.

This crap has been normal for far too long. 

Normal. 

Normal for me is not the same as normal for someone else, for the most part. Sure, normal for us all is that the sun rises and sets every day and the earth revolves around the sun and we need certain combinations of gases to breath and nutrients to stay alive and etc. But normal for me also has come to include struggles with depression, anxiety, and pain; solitude and loneliness; and medications. My normal includes a lot of stuff that I hate. 

Zenhacking My Life, 2012

I don't make New Year's Resolutions — never have succeeded. I tried a few times when I was younger and I had the success that all articles about the futility of resolutions predict: zero. But there are a couple of sites I follow — one always and one sometimes — that have ideas for changing one's life without resolutions or goals. One of the sites is zenhabits.net; the other is LifeHacker.com. and both offered up a true gem for me to use to change my life into what I want and need it to be.

What I need in order to change my life (YMMV) is new habits. And among the ways to help me make the changes is to implement the placebo effect.

Absolutely Exhausted

'Absolutely Exhausted' is a phrase used by my mother since I can remember. Of course, I picked up this phrase from hearing it all my life. Most of the time, it's simply an example of hyperbole or poetic license, but there are occasions when it was ... or is ... a completely concrete description of my condition.

For example, there was the time I went to Knott's Berry Farm with my youth group when I was 15. My best friend, two boys we barely knew, and I spent the day and evening wandering around the theme park, riding on roller coasters and eating whenever we felt tired. The next day, not only could I barely move, I couldn't stand. I was absolutely exhausted. And my feet hurt.

When I was in my mid-20s, my doctor informally diagnosed me with fibromyalgia. At the time, few doctors had even heard of the condition, much less gave it legitimacy. But fibro (as my friends and I call it) gives concreteness to 'absolute exhaustion.' In fact, when the fibro is flaring up it makes me feel a lot like a block of concrete. Tired concrete.

Know what else causes 'absolute exhaustion'? Depression. Grief.  Eating poorly (too many simple carbs). Too little exercise. Poor sleep: too little, too much, not staying asleep, and so on. Basically, I have an absolute exhaustion trifecta, or quadrafecta, or whatever. And I am absolutely exhausted. And I have a plane to catch.

Okay, so I don't have to catch the plane for another 59 hours (is that all?!), but considering that I am almost welded to the couch I'm so tired and immobile, 59 hours — including time for sleeping eating commuting working errands laundry dishes packing reading email and picking up my new iPhone on Thursday — isn't much more than a blink. A slow blink. And slow is all I can do right now.

Fibro and fatigue have been teaching me about essentials over the years, and I am getting better at pushing aside the little errands and activities and things that are nonessential for travel (I almost don't overpack anymore!). But I still have a helluva lot of essentials to handle before Thursday night. And I am Exhausted — Absolutely.

How about you? Is 'absolute exhaustion' a poetic notion or a concrete adjective in your life? Do you have any family sayings that are truer now than they once were?