Ohgodohgodohgodohgodohgodohgod.... It huuuuuuuuurts!

But I'm okay. Yeah, really, I am.

I mean, I am. I've accomplished all that I wanted to for the day already (mostly- I'd like to clean the bathrooms, but I think we can all agree that this may not be happening today), which makes me a badass.

I wish I could drive. I want more movies from the library.

Ah! Did I mention my new kitty, Coraline?

She's kind of a bitch. But I think she'll get over it. She's like my sister, K-- lots of hissing and growling, but underneath she likes affection. I've only had her since yesterday afternoon, and already she's a lot braver and more affectionate, so I have good hopes for her. She's also fat. Ok, ok... overweight. She likes to lay with her hind legs sprawled out on either side of her, so she just completely flattens out against the floor and looks like a giant black blob LOL. She has a small, dainty head, so I know that when she loses the weight she'll be a pretty little thing. I mean, she's pretty now, but... hefty.

And did I mention my new(er) hair color?



I know, I know. Smokin' hot readhead, coming through. Try to control yourself, if you can.

I'll wait.

By the way, those "favorite things" that the title mentioned? (Besides my cats and my red hair?) Pain killers. Hell to the yes. Now kick in, my pretties...
It's been a busy few days. I've been working quite a lot (for me, anyway). Wednesday was regular work, but I was flaring very badly due to medication changes, and I was thoroughly exhausted by the time I got home. On Thursday, I attended a training on working with domestic violence and childhood sexual assault survivors, particularly pregnant and postpartum survivors. It was really good, and actually led to some epiphanies for my own self, but I'll wait until I have a copy of the presentation to go over those, so that I can make sure that I actually get the specifics down. My brain fog has been so bad lately, I end up stumbling around in vagaries when I try to tell C about my day.

Thursday evening was the Homicide Remembrance Vigil, and I worked the welcome table for that. I've experienced many kinds of loss in my life, but never the loss of a loved one due to homicide. Judging by the talks I heard and the faces of the participants, I can only imagine that it is excruciating.

Yesterday, I met with one of the victim advocates/therapists for the Marine base here in town, as I'll be speaking to a gathering of the commanding officers next month to kick of Domestic Violence Awareness Month. The meeting was good, but I had to work on my talk and come up with the pictures I was going to use so that I could email them to her ASAP, so I did that in the evening. The combination of the past few days of training and vigils and exploring my own story again triggered my PTSD, unsurprisingly. I didn't expect it, though, and it caught me off guard. I became increasingly distressed as the night wore on, but I was able to use some of the coping mechanisms that we teach the girls in group to maintain my grip on reality. That's not to say that I didn't do some crying and freaking out, because I mean, who am I trying to kid? But I didn't go into full scale meltdown, which is serious progress. I'm damn proud of myself.

Juneaux seems to sense when I'm in great distress, either physically or emotionally/mentally, and he acts accordingly. He followed me into the bedroom last night when I finally settled down to try to rest and cuddled right up next to me, purring loudly and pressing his warmth up against my side. It relaxed and comforted me enough that I was able to drift off to sleep several times, though I did wake up gasping in sheer panic and terror when C opened the bedroom door to come to bed. I could not stay asleep, though, even with the security of C's solid presence next to me, and I woke myself up several times by tossing, flailing, mumbling, crying out, and even once with singing! Finally I removed myself to the couch about 5 am so that C could rest undisturbed, as he is pulling a 12 hour shift tonight. Out on the couch, Juneaux curled up with me again, and I was able to sleep for a few hours uninterrupted by anything but crazy dreams.

So today I still feel in a funk of sorts, but I know what's going on, and I'm just going to go about my daily business and not freak out about freaking out. I mean, considering what I'm up against, this is a totally normal response. I tell other people that all the time, and I know the same applies to me. It is heartening to see how much progress I've made, too. I wish I could just never have to deal with the junky trauma ever again, but I know that's not how this process works. I'll always have to deal with my past in some ways or another... but I can certainly do it in healthy ways. Even if I do feel weirded out and on edge. By continuing on with my life, I deny G any power that he thought to exercise over me. I am bigger than him, I am stronger than anything he could ever do to me, and I have won. I may still feel funny, but I have won, and I think that's worth a lot.
My hands are stiff and hurting a little today, and my shoulders are absolutely killing me, so I'll keep this brief.

I talked to my madre this morning for quite some time. It was great! I miss her. She also helped me to sort through something that has really been affecting me since it came up (more on that later), and told me humorous anecdotes about the pigs on her boyfriend's pig farm.There's one pig that she named Sugar, so when she gets pregnant and has babies we're going to call them SugarBabies. My suggestion was Sugar Cubes, which led to the thought of naming each one after a different type of sugar, like Granulated, Powdered, Dark Brown, Light Brown, Cane, etc. We had a good laugh over that one.

I saw my rheumatologist today. She was not happy to see my walker, but I've brought it in before and it seems she didn't notice it then. She said that she feels it's "a crutch" (it's a walker, silly! kidding...), but I told her that I see it as a valuable tool and explained why and how I use it, and she was satisfied. After going over my developing symptoms, she told me that we need to be sure of what it is we're treating. The pain in my hands and feet caused her to re-order some tests after poking, prodding, and rotating me for a bit, because fibro doesn't follow this path of development she says. So I may be dealing with an entirely different beast, which wouldn't surprise me. A lot of these things have overlapping symptoms that mimic one another. I see her again in a month, so I'll know more then. Also, I got a referral to a pain specialist! She found the only one here in town that takes my insurance and is accepting patients, so she's getting me in. I could kiss her. She also changed my pain killers from hydrocodone to oxycodone, which is Percocet. I was on that briefly after the big accident, and I remember that it metabolized well with me, so I'm hopeful. I made it a point to inform her that I have not been abusing my prescription drugs, since we had that "talk" last time. Anyway, it was a good visit, and a quick, efficient one. I am satisfied.

I cooked lunch today! During my appointment, I was struck with a strong craving for rice and fish, which I indulged. I cooked the salmon with minced onions, some seasonings, and a bit of agave-sweetened apple cider vinegar. It was pretty phenomenal. What's more, it's staying down quite well. I'm even still hungry after waiting for a bit, so I think I'll follow it up with an apple. I am just being very careful not to eat too much, because I really don't want to relapse again. Every time I do, it's more miserable. But I'm making good progress in getting back to regular eating habits, or even eating habits that were better than the ones I'd fallen into. I'd like to cook more often, and I intend to make the effort. My intentions are good; we'll see about the follow through.

It's been a good couple of days. Yes, I've been sick as a dog, but I've read some good books, cuddled with my husband, talked to J and my mom, and watched some good movies. Oh, and done good stuff with work. I'm totally wiped out, but I feel good about how things are going.

Pain

Pain.

An ever present reality.

It's not always overwhelming, breath-stealing, and totally crippling. No, with proper administration of pain killers that many deem much too strong, I can keep it at "bay", keep it down to simply, well...

...simply debilitating. Limping, instead of frozen in place. Upright (sometimes), instead of permanently prone. Functioning, of a sort, in a sort of half-capacity, a quarter-capacity, a minuscule sliver of the girl that I once was and the woman that I was supposed to be.

I am desperate. I want to claw my way out of my skin, to burn the empty husk and reinvent myself as the richly experienced nomad of my fondest dreams. To want to do so much, to see so much, to feel and taste and experience so much, yet to be shackled within a defunct and decrepit frame is the keenest torture.

I was going to travel, to taste the foods of different cultures and walk the back alleys and trails and thoroughfares of other peoples and lands. I was going to live in the mountains, to build a log cabin and live off of the land, to work with the Forest Service and pack my way through years and years of paths and backwoods trails. I was going to winter in Alaska, to hike Denali in the summer, and backpack across America to see how far I can get before I want to stop. I was going to learn to massage, to soothe the pain of others and ease their way in the world. I was going to do so much... so much...

This is not to say that my life doesn't have meaning or joy. Perish the thought! But still, if I could... I would shred this creaky, crumbling corpse like so much old paper shot through with mold and age. I would dig my way free of the blank, heavy walls of constant suffering that muffle the sights and sounds of the outside world. I would... I would. If I could.

But I can't. I've tried. I've tried, and received suffering heaped upon suffering for my attempts.

And now? I am broken. I am bowed. I am sure that this is my lot, and I accept it with bent head and a heavy, rebellious heart.

So the days pass... laced with pain... stiff with longing and knotting muscles... dulled by the relentless battering from within my own self.

Does that make me a warrior, to press on when life itself is truly naught but suffering shot through with the occasional joy? I suppose it does. I suppose it takes strength to live the life I do. I suppose I'm a fighter, a warrior, an inspiration or some such.

But I don't feel it. All I feel is pain.
I started work on Christmas presents the other day. I'm enjoying the chance to create something again, something that has meaning and purpose. It's better than just lying on the couch all day, moaning. Now I can lie on the couch, moan, and accomplish something all at the same time! lol

I did, however, overdo it a bit... again. Going to church yesterday morning was hard on my body, and I had to leave just as the sermon was starting because I was feeling very ill. A quick stop at the library to pick up some more movies for my sick seclusion confirmed that I was, indeed, pushing beyond the bounds of my endurance and I high-tailed it home.

I felt ok the rest of the day, so long as I was resting, but I got that "itch" towards evening and started crafting... which, of course, meant that I had to unpack and organize my still-in-transition craft room. I guess I got carried away, because although I could feel my body yelling at me that I was, again, beyond the bounds of my endurance, I kept going. I guess I was hoping that it was a false alarm. I mean, you can only get so sick before you kinda start doubting your body's warnings that it's going to get sicker. It's like an internal eye roll, like, "Really? Are you just pulling my leg?" I get very tired of pulling up short in life to keep myself from getting sick, and sometimes I wonder if it's all in my head and if I'd be able to just "get over it" if I powered through and kept going.

Well, this proved to me that I had better listen to my body, or ELSE. I had finished one project and was working on Mom's present when C got home, so I wrapped it up to spend a little time with him. I felt hungry for the first time all evening, so I chopped up a peach and munched on that. Big mistake. I spent the next hour and a half throwing up pretty much everything in my stomach. I don't even know if my evening meds got absorbed or not. In any event, I was utterly miserable. I finally went to bed after I was able to keep water down for a while, and half a mug of Sleepytime tea.

So today, I still feel completely nauseous, queasy, and kinda whole-body-bruised. I didn't sleep well, and I woke up tired and aching from the inside out. It feels like the flu, truly. A bad flu. And all this because I wanted to get my craft room into shape. Really? That's whack, man. I shouldn't be punished for trying to lead a productive life, but there you have it. At least I'm keeping some toast and applesauce down this morning. (Barely.)

Anyway, this was a good lesson. I suppose I'll be more likely to actually listen to my body and pull up short when I'm approaching my limits from now on... at least, as long as the memory of feeling awful is still vibrant in my mind.
Do you ever get that feeling that's like, "Hey, I want to write something!", but then when you actually get to the page you just kind of go, "Meh."? That happens to me so. much.

Like now, for instance. I have this whole "existential identity crisis" thing going on, but I just don't have the words for it right now. I just ache from the inside out, but that's from the fibro.

SOULS shows up next week for three weeks. I'm half-expecting one of them to show up at my door, but I'm not sure if I'll mess with their heads a little if/when they do or whether I'll just be super nice because I know that knocking doors sucks more often than not. I've got no money to help them with, but I do have water or juice to offer, and an air conditioned house with a clean restroom, so...

I had a dream last week that I hadn't actually graduated from SOULS, so I had to go back into classes there to finish it up. Within a day or so of arriving, I was in tears because I hated it and didn't want to be there and I wanted to leave but I couldn't (whether that's from my own fear of failure or from rules enforced by the school I am unclear on). Needless to say... I'm ambivalent about the SOULS kids showing up. Dunno whether I want to show my face or not. I know that I won't bother pretending to be something I'm not, but I'm wary of what the reaction might be. So... I dunno.
So what happened, you ask, to provoke such a sadly bewildered post followed by several days of silence? I'll just copy and paste sections from emails with good friends explaining the situation, rather than type it all up again.

"I just had some drama with being let down by a person who promised to do a certain thing... my "adopted" (sorta related by marriage) uncle offered to send me money every month for these two medicines to help with my fibro and said he would be my med provider for life, but today I got an email saying that he got back together with a long distance girlfriend so he will be using his money for that instead. He was all up in arms because he had contacted me saying "hey, my girlfriend called and we got back together, so I want to split the money between you guys alternating months". I told him that the meds are a consistent thing, and it's gotta be all or nothing. I even floated the idea of his girlfriend coming to visit him.. you know, since he had already promised to help me. But then he responded with affrontery, saying that he was uncomfortable or hurt or something because it felt like I was making him choose between her or me. Um, hello?! You put me in that position!! So now he's written me off, choosing the girlfriend.
I just feel... abandoned. Disappointed. Like some hope for getting better has been taken away after I dared to get my hopes up... You know we can't afford the meds on our own. There are no generics for either of them, and the copay is high. So that's what's going on. It just brings up a bunch of stuff with trust and abandonment issues, you know? Especially because he literally said, "I choose D. See you later." Ouch.
He had said all of this "I love you so much, you're my favorite niece, you light up my life, I'm so happy to be helping you out", etc. And now I don't know if I can believe any of it... because the moment that things got uncomfortable him (by his own fault, he shouldn't have promised if he couldn't make good on it... or if he was just going to take it back) he dropped me like a hot potato. Where's the love now?
I guess what makes me the angriest is that I never asked for this. He offered, from the beginning. He pushed the issue. I accepted his help a little uncomfortably, because it's hard for me to accept help.. and I even told him this. I was very honest about my guilt with receiving help from people, especially when money is involved. And now my past has been validated. Again. Accepting help from people just gets you screwed over and hurt. (I know, intellectually and from the work I've done and the books I've read that it's not true but... it has been proven so true in my life, it's hard not to believe it.)
So yeah. I trusted an older male, not exactly a father figure, and I was hurt and abandoned. Again. And I accepted help, against all my inner precautions against it... and I was dropped and left behind. I don't think that any of this was through any fault of my own, but then it never is, is it?
Bleh."

J responded with, "Ugh this makes me so angry too..

I'm sorry. No, you didn't deserve this. At all. I don't know him at all or any circumstances, but he sounds like a jerk. At any rate, he sure treated you harshly and thoughtlessly. Perhaps he somehow really doesn't understand what a big deal his offer was? I dunno. I don't want to defend him. (Well, I kinda do because it's so hard to imagine someone being so unkind to you!) 

He had no business to make an offer like that and then take it back for such a DUMB reason! Seriously. Dumb. What kind of girlfriend is this, anyways, that he has to send her money?!?"

"He's not sending her money, he's going to visit her because it's a long-distance relationship. I suggested that maybe she could come to visit him, and that's when I got the "break up" email LOL.

I dunno if he's a jerk, per se... he has cerebral palsy, so I don't think his social skills are exactly up to par. But he had been going on several times about how happy he was to be helping me, and about how he had been wanting to help someone for a while but no one would let him or he couldn't find someone or something, but now he could help me and he was so happy about it. And now... this.

C said that he didn't think he was too stable to begin with. I guess not. He's kinda gone back and forth on the thing a little the past few weeks before this. I just didn't really see it, because I was a lot closer to the situation... and so hopeful.

I don't think he did understand what a big deal his offer was... though I was very honest with him about how hard it was for me accept help. He shoulda got it.

Thanks for standing up for me :) It makes me feel good to know you've got my back. I posted a facebook status in the midst of my anger and hurt yesterday that said "I'm broken. I'm done, and I don't care anymore.", and I got three private messages and a bunch of affirming, sympathetic, and supportive comments. One of my friends, after learning what happened, offered to send me some money to help with the med costs. I thanked her but turned her down, because it's a monthly thing you know. But I do feel super affirmed and supported."

After responding to the "break up" email, he responded with an apologetic letter and later pled for me to give him another chance to try to make this work. I turned him down, because now I see that I can't rely on him to be stable or consistent. As J pointed out in another correspondence, I shouldn't doubt his sincerity, just his ability to follow through on this. So we're still "friends", or uncle and niece, or whatever, but... it has still taken a toll on me, even though it got straightened out.

I've mentally worked through this, but my emotions have been kinda haywire since, and I've been very restless and almost jittery. The past two days I overdid it by far with cleaning and organizing, but it was like I had/have this pathological need to just stay busy and keep doing, doing, doing. It's not the Should Monster, as M made that distinction, but it's more of a driving need to just... I dunno. Not be helpless? To do something? To be in control of a measure of my life again? Regardless, I felt the effects of overdoing it today with a very low level of spoons and some other unpleasant symptoms that cropped up after I accidentally used up all of my energy this morning. 

On the bright side, I did my makeup today (eye shadow, liner, mascara, lipstick, the whole nine yards!) and I looked hot, especially now that I'm a redhead :) (Doing the makeup is part of what took up so much energy, especially because I also showered, and I had to stand for both of these activities.) While I was in the parking lot of the library today, a stranger doubled back to talk to me, and told me that he hoped I didn't think him presumptuous but that I was beautiful. (He also said he had a thing for redheads lol) It really made me smile, especially because I was on the cusp of throwing up, so I didn't feel all that beautiful at the moment! So I smiled at him and wished him a great day. It was nice. Very nice. Especially because I've been a bit insecure about my appearance lately, having put on weight. It's hard when you go from being quite skinny to chunkier, because you've got that image of what you looked like before that you're comparing yourself to. It's hard for me to see past that and look at myself objectively to realize that I am, indeed, attractive... even with a thicker waist. On the bright side, my bosom has also increased, and C is a boob man, so that works out well.

C assures me that I'm still sexually attractive, and I'm glad for that. It's about time for me to hit the hay, so maybe I'll go see if I can get him to prove it...
Oh, my broken heart...

Why do older men keep abandoning me?

Why do I keep trusting them?

Why do I let people in at all? I just get fucked over. Again and again.

I don't want to trust anymore. It hurts too much.

T_T

Theme music


C and I were listening to Two Steps From Hell today while out for errands. I mentioned how cool it would be to have your own personal theme music, to narrate your daily activities. "I wish my life had a theme song!" I exclaimed.

C began to chuckle, because he immediately thought of the appropriate piece of music to narrate my life: "Womp womp waaaaaaaa....."

When he told me, we both laughed heartily because he is exactly right.


























Okay, yes, discouraged and worn down and tuckered out though I may be, I do have to share a very exciting and inspirational story.

About a week and a half ago, I was invited for the second time to speak to a classroom of high risk teens who are going through the program my agency offers at a local charter high school. I feel totally comfortable there because I went to one of the schools for druggies, dropouts, and pregnant teens (while being none of those things) here in this town and absolutely adored it. So I went and told my story of how I was abused, abandoned and neglected throughout my life, and the dysfunction I endured. I also told the story of how I put one of my abusers behind bars, how I learned to forgive, and about self-hatred, self-love, and boundaries.

I saw a lot of nodding heads amidst the laughter while I was talking, and I know that a lot of what I said resonated very personally with the kids there, who live lives similar to mine. While in the office today, we got a phone call from the teacher of the class, one of our peer support specialists, and she told us that one of her students disclosed to her. The girl shared that one of her family members had been sexually molesting her for a long time, and while he had stopped he was still very involved in her life. She hadn't ever told anyone, but hearing my story prompted her to speak up and get help. Her words were, "if that Cassie girl can make it, then so can I."

Holy crap, y'all.

I mean, just let that sink in. By spending an hour with these kids and just telling the story of what I've gone through and what I've done with my life (counseling; stable emotionally and mentally--mostly, hah!; a stable, healthy, and happy marriage; a job that I love, am good at, and am passionate about; setting and maintaining healthy boundaries in all aspects of my life), I literally changed the course of someone's life. She is gonna do so much better... her self-worth is going to change, the way she interacts with those around her, the way she goes after her dreams and goals... She will be much less likely to continue the cycle of abuse by getting into a bad relationship or becoming an abuser herself. She will advocate (in big or small ways) for those she sees being victimized in her life, because that's just what happens when you learn about this stuff and put it into practice in your life. It's a natural by-product.

This girl is going to start coming to the teen support group, which I just so happen to be getting re-involved in very soon. That means that I'll get to work closely with this girl who saw something in my life that gave her hope that her life could be different and better too. What a privilege.

I love my job.
I cried on the way to work today. I guess I just felt overwhelmed. Overwhelmed by the pain that just isn't being beaten back by pain meds that are, truthfully, quite strong. Overwhelmed by the magnitude, the incessant waves that course through me without pausing long enough for me to breathe. Overwhelmed by the throbbing of my legs, the sharp aching of my hips, back, shoulders, spine, and rib cage, and the new voice in the cacophony... my hands. Yes, even my hands have started to throb and cramp now.

I think that's what brought me to tears, really... just another sign of the progression of my illness. Is it really fibromyalgia that's doing this to me? Why can't I get better? Why can't I plateau? Why do I just keep getting worse?! I am tired, so tired of being in pain. I am so tired of being sick every minute of every day. How do I make this stop? How do I get this nightmare train to screech to a halt, or at least slow down so I can tuck and roll down some embankment friendlier than this?

Apathy. It's all around me, all inside me. I'm wrapped up like a pig in a blanket, like a kid with a cold, only this is not a blanket that brings comfort. It gets up inside my nose and my lungs and my brain and just smothers me, weighs me down, until I don't think that there's any point to anything anymore, really.

No, no... I'm not in the black pit. I haven't gone there yet. I'm just worn down to a nub. Sandpapered away to the barest suggestion of someone who cares.

I have found a purpose for my life, and this is the life that I am building with my husband, and the agency that I am building with my friend and boss. Those two things keep me going, even though about all I can do right now is float with the current like a dead fish. But hey, at least I'm going, right?

You know, I really don't want it all. I don't.

I just don't want to hurt anymore.

(I listened to this song on repeat on the way to and from work a few times today. It felt... apt.)


I feel ashamed,
With abandon in my heart and on my face...
I've suffered the blame,
I would show to you this way but I'm too late...

When the sorrow it breaks them,
I will replace them
For you.

Dead flowers for the torn apart.
Laid at the grave to heal a broken heart.
Let it rain until it floods
Let the sun breathe life once more...
Reborn.

I wish you the same...
To walk beside and carry on this flame.
To see you again
With a radiance of pure and holiness.

When the sorrow it breaks them,
I will replace them
For you.

Dead flowers for the torn apart.
Laid at the grave to heal a broken heart.
Let it rain until it floods
Let the sun breathe life once more...
Reborn.

Dead flowers for the torn apart.
Laid at the grave to heal a broken heart.
Let it rain until it floods
Let the sun breathe life once more...
Reborn.

Dead flowers for the torn apart...
Dead flowers for the torn apart...
Dead flowers for the torn apart...
Dead flowers for the torn apart.

Let it rain until it floods
Let the sun breathe life once more...
Reborn.

Dead Flowers for the torn apart...
Dead Flowers for the torn apart...
Dead Flowers for the torn apart...
Dead Flowers for the torn apart...
Dead Flowers for the torn apart...
Dead Flowers for the torn apart.
So my friend J is studying to be a nutritionist. I know she'll be fantastic at anything she decides to pursue (she's just one of those people), so I know she'll make a great nutritionist. We've talked before, briefly, of her analyzing my diet and coming up with some helpful tips for me, and just the other day she asked me to be a guinea pig for her and keep a food journal for a few days. I agreed in good humor. After all, my friends all agree that I eat pretty healthy, so what do I have to hide?

I'll be the first to admit that I do have an odd diet, and not particularly varied. There are a few factors to this. First, I am constrained by my food allergies, and there's not much in the regular stores for me outside of fresh produce. Secondly, money is an issue, as I can't afford to be buying all that specialty stuff, and we really can't afford anything outside of basic staples at this point in time. Thirdly, there's the energy factor: I have all these grand ideas for dishes to make using the ingredients on hand (I used to love creating meals for the S family and myself, and I miss that), but I don't have the verve to put those ideas into action. Do you realize how much energy cooking takes? The standing for that length of time alone is prohibitive. Fourth and foremostly, there's the nausea factor. Many times I know it's time to eat, or I'm hungry only briefly, but the nausea kicks in and the idea of food is just not appetizing at all... much less cooking, immersing myself in food preparation. Yuck. Oh yeah, I also forgot about my finnicky gut. I can't digest a lot of things very well, so I stick to simple, easily digestible foods like fruits, grains, and some veggies. Protein makes semi-frequent, small appearances. I've learned the hard way what happens if I eat too much protein in a day... which means that I can usually have a solid protein only once a day, twice max. I don't even bother with nuts anymore, unless it's cashew butter (which I can't buy for love or money in my town anymore anyway).

So with all that, it's a wonder I eat at all, I'd say. I do try to make sure that I eat well, as well as I can. But lately... I've still been wrestling with depression. It's not bad, just enough to be annoying, you know? Kinda like a toothache. It's not harming you, but it colors the edges of your day and kinda makes everything a little more annoying. And with that depression comes apathy, which means I really don't care about a balanced diet right now. In addition, I'm more prone to eating junk food. I'm craving it much more often, and, what's more important, indulging it more often.

Keeping track of my eating habits opened my eyes to just how much junky food I've been eating lately, and I found myself swamped with guilt. I couldn't believe it, but I really felt really bad about... well... my failure. Yes. I had failed. I wasn't eating well, and now there was proof. The thing about falling short of my ideals for myself is that I then, in my head, become a bad person. The Should Monster comes out to play and I beat myself up. It's terrible. It's awful. It's regular as clockwork.

So I gave in and junked it up yesterday. I mean, if I'm already screwing up, why not go for the gold, right? I even had pizza. (For reference, I'm allergic to at least one thing in every single component of pizza.) I've been cheating quite a bit lately... which, of course, makes me feel even worse about myself.

But no! I will not allow myself to abuse me. So I've seen that my eating habits could be better. Now I take this new day and try to do better. That's it. It's that simple. I'm not a horrible person because I had a soda the other day. I'm not somehow bad and undesirable because I ate a cookie. How can I even think that these choices constitute a moral failing somehow? I'm nuts, man. There's still a bunch of stuff to hammer out in my head, but I'm making progress... a little bit at a time.
Ok, yes. Even though today hurts, and it hurts a hell of a lot, I have some small satisfaction in knowing that even if I did nothing else today, the bed is made.
It's raining outside, which is grand. Lots of lightning. I sat outside watching as the storm rolled in and over. It's still coming through, and I definitely feel it, but the exhilaration of the lightning makes up for the high pain levels, fever, and nausea.

I've spent the day watching movies. Nothing terribly exciting happening in my life of late, which is good. No news is good news, eh? I did manage to hook up with a friend who has the same neurologist as me and who will be traveling to the same hospital up north for further investigation. This means that C and I will be able to hitch a ride with her and her husband, rather than waiting to save up the gas money ourselves. That's a relief, because it was going to take a while if that were the case, and I'd like to get this twitching thing addressed as soon as possible. It's a bit... intrusive, shall we say? I don't know when it will hit, and it's dangerous for me to be driving when it's really going crazy.

Um, yeah. That's pretty much it. Just been trying to work as much as possible lately, even if I feel terrible. (Which I have.) I could just lay around on the couch (which I do), but I also want to be... contributing to the welfare of humanity somehow... not to mention the household budget. And truly? I love my job. Ah, now I remember the blog post that's been floating around in my head... not so much of a "post", really. More like my musing upon a particular thought. But isn't that what all of this is, anyway? Just my words, spilling out of my brain and into cyberspace. (I do wonder about readers, sometimes. If you're listening, leave a comment? The stats say that there's folks out there, from other countries even, who pop in. It'd be cool to know... kind of like stamping my passport, you know?)

Well... that's all folks. I'm going to knock out some housework, maybe take a soak, read some... basically just kick around until C gets home. If he gets home. He's been picking up extra shifts lately, so sometimes he stays until the early hours of the morning. Needless to say, I'm usually in bed by then.
J shared the funniest link on my facebook wall, and I wanted to put it up here for posterity. I relate with, like, every single one. They are my life. Except that now I have multiple food allergies, and can't do potatoes or carry Nutella in my back pocket, which makes my life just a little bit sadder than that.

Enjoy.
Having been a part of the chronic illness community for about a year now (or at least on the fringes, watching what goes on), I've come across many a list of what not to say to someone who is chronically ill, or things that chronically ill people don't want to hear, etc. Shoot, that's what Chronic Illness Cat is all about! I think some of it comes from the fact that people with chronic illnesses feel marginalized and discounted by society's understanding of and relation to sickness and the mainstream attitudes that accompany it. I mean, here in America, sickness kinda makes us uncomfortable. So does poverty, pain, abuse, disease... anything that's not happy and shiny and new. Unless it's particularly awful and heart-rending, in which case we'll obsess over it. (This takes me back to my very first post in which I muse about the pursuit and idolization of perfection in society and how that has affected my thinking.)

So with that uncomfortable feeling as the backbone of this attitude, I would say that the muscle and flesh of it is the expectation that all sickness/disease is acute. That is, you get sick and then you get better. Even those diseases that we have claimed as poster children (think breast cancer or AIDS) are of a similar vein; either you get better or you die. There is a definite "end", a trajectory that you can pinpoint your particular location on. Well, with a chronic illness like fibromyalgia or UCTD... there is no trajectory. There is no "end". And that brings me to the point of this little musing/rant.

I get annoyed sometimes by the things that people say when it comes to my illness or my symptoms or how I'm feeling physically. I mean, I get that it's the elephant in the room, since it's kinda taken over my life, but one of the things that irks me a little is when people ask how I am, then tell me that they hope I feel better soon, or better yet, "get better". I'm always tempted to take the easy way out and just say "fine", but I realize that this would only feed the monster. Once I say "fine", the next time that I'm actually honest and say that I feel pretty horrendous the person is going to wish me well so that I can go back to being "fine".

I'll let you in on a secret. Now that my life has altered so drastically, I don't actually mean I feel "fine" when I say that. It just means that I don't want to bring you down by telling you that I feel awful, because you either are made uncomfortable by my physical misery or you will pity me (which is a completely different animal from the genuine compassion that my support system exudes... which is why I'm lying to you and saying "fine", because you're clearly not in my support system.). Also, it could mean that I just don't have the energy to explain why I'm not feeling fine, and what exactly is wrong with me, and that I'm anticipating some sort of advice that I don't feel like dealing with or dodging. This is especially true for very religious/in the medical field/a natural health and healing advocate/some combination of the three/good god help me if it's all three people. Another possibility is that I sense that you are merely making polite conversation and you don't really care how I'm feeling, so telling the truth would only a.) make things awkward, and b.) imply a level of friendship and confidence that I'm not willing to bestow on the likes of you.

I guess it's just that, if you don't know me, then I'm obviously not going to go into gory detail unless asked. (Hey, sometimes it happens.) If we're only acquaintances, then I'll probably go with "fine". But if you know me, even if we're not close or you're not a part of my support system, then you should know that I'm pretty damn sick. You should also know that it's not going anywhere, so wishing me a "get/feel better soon" is basically just blowing hot air up my butt. I'm not getting better, folks. I might be sustaining, sometimes, but barely. I feel like I'm getting worse, just from the sheer numbers and scale of my symptoms. My life is hard, and hearing "feel better soon" feels like a casual dismissal of everything I work so hard to do. I'm upright, and maybe even dressed. Do you know what an accomplishment that is? So telling me to "feel better soon" is just like... so minimizing. Taking it and scaling it down to the level of the common cold. Like telling a double amputee that you hope they feel better soon because you twisted your ankle last week and you totally know how they feel.

It's just that... I mean... "feel better soon". If you know me at all... then you'll know that I won't. I'm not going to. And I don't want to be all Negative Nelly here, but I'm just speaking from practical experience. I mean, yes, we can all hope that I feel better, that my symptoms recede, and that I can live a normal life again, but... I guess I've kinda given up on that. I mean sure, it'd be nice, but my focus has shrunk to dealing with the immediate present, to getting through each day. I might take things a week at a time, but that's about as far out as my scope goes right now.

And you know, I'm sure it comes from a place of "I don't know what the heck to say to you" and "I genuinely care about you and wish you the best". It's just the way that I'm taking it. It's not how they mean it. I know this. But it's still irritating... yet I choose to just let it go, because I know it's on me, not on them, to navigate the world with this handicap. I don't ask them to bend to me, watching every word they say. It's unrealistic and unfair. So I'll just come here, let off the steam, and then make my merry way back into the world. I mean, shoot... I didn't know a thing about chronic illnesses or chronic pain until it smacked me upside the head, so how can I expect everyone else to know and understand what I'm going through and where I'm coming from? There's just no way.
This weekend I worked the information booth at a gun show. I was determined to put in all of the hours, both days, no matter how crappy I felt/would feel... and I did. I earned enough money to knock out several of my bills, which makes the financial burden lighter for my beloved.

I told him that I was doing it for him, and he corrected me with, "No, you're doing it to pay your bills and be a responsible lady." I corrected him and said that I already know how to be responsible-- I've been making ends meet and paying bills for years! I'm doing this for him, because he is the one that most of the bills fall to, and I want to lighten his load. I don't think he had thought of it in that way.

Still wrestling with the depression that comes with this awful pain, though now that my menstrual cycle is about to restart I think things will get better. I've been craving affirmation and trying to extract it from C, but it's like trying to get water from a stone. Spontaneous words of affirmation are not his strong point. (Understatement.) He is the type that will offer a few well-placed words to go along with an accomplishment, but he's not the cheerleader type. That's my area. He is the steady, solid rock that I can rest upon, but I have to remember that this solid rock isn't also a sparkly crystal cavern of delight. Weird analogy, I know, but it's the best I've got right now.

Anyway... just pushing through, one day at a time. I really want to get my house into shape, and I'm working on it one task at a time, but I find that I need some help again, probably... if I want to get any deep cleaning done, anyway.

I may be able to get my computer fixed for free. How I would love that... booting up C's big old computer is a pain, so I don't do it often. Plus sitting upright in his chair tends to increase my pain. I don't know what it is about this chair. But I do have my smartphone, which is proving to be a great boon. I found a game that distracts me for hours at a time. It's called Plague, and the objective is to cultivate and spread your plague to wipe out all of humanity. It's really a ton of fun, and requires strategy, which is something that I am weak on and want to improve. I also found a really neat fibro-tracking app that I can record my pain levels, symptoms, med dosages and times, etc. It's a great tool.
"'You can't guarantee things like that! After all, when we had all the books we needed, we still insisted on finding the highest cliff to jump off. But we do need a breather. We do need knowledge. And perhaps in a thousand years we might pick smaller cliffs to jump off. The books are to remind us what asses and fools we are. They're Caesar's praetorian guard, whispering as the parade roars down the avenue, 'Remember, Caesar, thou art mortal.' Most of us can't rush around, talk to everyone, know all the cities of the world, we haven't time, money or that many friends. The things you're looking for, Montag, are in the world, but the only way the average chap will ever see ninety-nine percent of them is in a book. Don't ask for guarantees. And don't look to be saved in any one thing, person, machine, or library. Do your own bit of saving, and if you drown, at least die knowing you were headed for shore.'"

"He glanced back at the wall. How like a mirror, too, her face. Impossible; for how many people did you know that refracted your own light to you? People were more often--he searched for a simile, found one in his work--torches, blazing away until they whiffed out. How rarely did other people's faces take of you and throw back to you your own expression, your own innermost trembling thought?"

"'Picture it. Nineteenth-century man with his horses, dogs, carts, slow motion. Then, in the twentieth century, speed up your camera. Books cut shorter. Condensations. Digests. Tabloids. Everything boils down to the gag, the snap ending. Classics cut to fit fifteen-minute radio shows, then cut again to fill a two-minute book column, winding up at last as a ten- or twelve-line dictionary resume. I exaggerate, of course. The dictionaries were for reference. But many were those whose sole knowledge of Hamlet (you know the title certainly, Montag; it is probably only a faint rumor of a title to you, Mrs. Montag), whose sole knowledge, as I say, of Hamlet was a one-page digest book that claimed: now at last you can read all the classics; keep up with your neighbors. Do you see? Out of the nursery into the college and back to the nursery; there's your intellectual pattern for the past five centuries or more.'"

"'Everyone must leave something behind when he dies, my grandfather said. A child or a book or a painting or a house or a wall built or a pair of shoes made. Or a garden planted. Something your hand touched some way so your soul ha somewhere to go when you die, and when people look at that tree or that flower you planted, you're there. It doesn't matter what you do, he said, so long as you change something from the way it was before you touched it into something that's like you after you take your hands away. The difference between the man who just cuts lawns and a real gardener is in the touching, he said. The lawn-cutter might just as well not have been there at all; the gardener will be there a lifetime.'"