Something dark and hard but also viscous is rolling around inside me today. It started last night, on my walk. I started feeling dark and panicked and choked with grief and just… small and tender and tense. I keep bumping up against the hard edges of this thing no matter how I try to tiptoe around it. Depression? Anxiety? A combination of both? Could be PMS. Whatever it is, it makes me feel tacky and slightly soiled, completely exhausted, and way, way more pissed off than I am on a regular basis.

I'm angry, deeply angry, that I can't just get up and clean my house like I used to. Sure, it was hard back in the day (and now I know why), but it was doable. Now there are a hudred isolated little messes that I can't bring myself to corral. I'm too busy trying to drag my carcass through the day, make sure I take my meds, make sure I eat something, drink something, try not to vomit, futilely fight to stay awake… I'm weak as a kitten, and with less stamina. I hate being trapped in this body. Maybe that's it. Maybe that's the darkness I've run up against--I'm just finally fed up (again) with being trapped and shackled.

Yes, it happens to even the most cheerful and optimistic of us, "us" being those with otherwise invisible chronic illnesses. I don't have a remission to look forward to, just a further "managing" of symptoms that grow ever stronger and more varied as the months pass. I have to wonder, is this future I'm facing even worth all the effort I'm putting into it?

Perhaps I'm just over-exhausted. It was a busy, active weekend, as far as my energy levels are concerned. We spent hours in stores, looking at various things that we are shopping for, testing different mattresses and computer chairs… So exhausting, but also quite fun, because I was with Corey. But maybe my melancholy is simply a result of over-exerting myself during Corey's days off? That could very well be.

I spent some money yesterday, too, more than I usually do. I bought new components for a medic alert bracelet, a few other things… and I started feeling absolutely terrible and panicked later, sure that I'm a terrible person now because I bought frivolous things and I could have used the money to pay off medical bills… even though I took the thousand dollars I got from my late sister in law's life insurance and spent it exclusively on medical bills, and it seems that's all I spend money on these days… Like I'm no longer qualified to be a responsible adult who is good with money because I veered from absolutely necessary living-only expenses. Isn't that silly? I didn't use money appropriated for something else, and I can definitely make up for it in the next year. I guess I just don't feel like I could or should possibly… whatever. I don't even want to think about it anymore.

Whatever it is, I feel physically shitty (surprise surprise), I feel emotionally shitty, and I miss Bob with a fierce ache that won't be silenced. I contemplate getting up, doing the dishes, tidying the coffee table, even making an apple pie… and then I simply roll over and ignore my misguided ambitions. Perhaps later I'll dose up good with my meds, turn some energetic music on as loud as I can stand, and do the dishes and make that pie. Maybe a multi-berry apple pie? I dunno. I've been craving soda lately, too, mostly Coke. Gotta figure out how to get some of that here to the house, since I can't drive and I've got no vehicle… I wonder if I could simply order a 2 liter from a pizza place and get them to deliver just that to me? Hmmm… I'll have to make sure to hydrate alongside drinking soda, of course.

I'm sure my foul and exhausted mood will pass. I've got some exciting news that I'll write about then.

Note: I went and took a look at my "Quotes to keep me goin'" section, and it helped a remarkable lot. There's a reason I keep that page around… lol

So in all honesty, Hope's comment on my last post stuck in my mind and irritated me, like a splinter just under the skin or a grain of sand under the lid of your eye. As I am wont to do, I poked and worried at it, trying to figure out why it irritated me so. After all, if we can't learn about ourselves and improve and enhance as time goes on, why bother thinking at all? What's the point of introspection?

Anyway, I think I'm on to something. If you've not been in an intensely abusive, dangerous, or dysfunctional situation for an extended period of time, you won't understand. You just won't. I'll try to explain it in simple terms, though, so that I can get the words out of my mind and my heart, spit them out like gravel so I don't have to chew on them anymore (though truthfully I know they'll be rattling around in the back of my head for weeks to come now, if not longer).

I was raised in a sea of destruction. I never learned how to swim; I simply managed to avoid drowning.

I've never wanted anything more in my life than to be accepted for who and what I am, completely and without reservation.

I don't know how long it is in terms of years, but it's been the majority of my life thus far: I have not been accepted but punished and penalized for simply being myself, for being a child, for being exuberant, for being honest, for being… anything. The disapproval of myself was not just cold disapproval or disdain, it was actual physical danger on top of emotional (and often physical) damage, wounding, and scarring. My mind was broken. My heart was broken, again and again. My trust was broken. Who I could have been, should have been, was shattered, never to be restored to its original glory.

The circumstances I grew up in were such that if I failed to obtain complete approval I was in danger, both metaphorically and literally. I had to be pleasing in all aspects, or I would "get it". I couldn't mess up, couldn't be wrong, couldn't be displeasing in any fashion or I would bring pain upon myself and possibly (probably) others in my family, which is an exquisite form of torture in and of itself for someone as protective of loved ones as I am

All I've ever wanted is to be accepted for who I am. To not be rejected for being myself. To be approved of, to have my efforts thought well of, to be thought highly of for simply... being.

My beloved Desert Rose has mastered the art of disagreeing with what I do at times, yet loving me entirely and accepting who I am. Even when she speaks words of correction, I never feel endangered, challenged, or belittled because I am safe in her love.

My mother has been my safe haven throughout my life. I know that, even if she disagrees with what I'm doing, she never thinks any less of who I am or even of my motives for what I'm doing. She holds me in the highest regard, even if and when I have disappointed or angered her by my actions.

When I receive criticism, words of correction from those who have the best intentions and are just trying to help, well meaning suggestions, out and out disagreements and challenges of my thoughts/beliefs/opinions/courses of action, it is a message emblazoned across the sky that I reject you and your best efforts. You are not enough. (Again.) You have failed. (Again.) I reject you and your efforts. Pain is coming, and whatever negative things you experience are all your fault. Whatever pain occurs to those around you is all your fault. 

If this was the core message that every well-meaning suggestion was automatically translated into without your realizing it, would you not be touchy as well?

I recognize it, to a degree. I recognize it more, now. That doesn't stop the feelings from coming, the sickening swirl of grief and guilt and resentment and anger that simmers in my mind and burns deep in my belly. Something is broken deep inside, something that I personally have no way of fixing, at least not as of right now.

I'm tired. All my energy is used up fighting to survive each day, making sure that I'm still around to smile at my husband when he walks through the door at night. (It's harder than you think.) I don't have the wherewithal to make any changes that I myself don't see the benefit of, and I resent suggestions for change or improvement because it suggests that what I'm doing isn't enough, isn't good enough, that I'm not good enough and if I were then I would be better at handling all this.

I'm starving for affection, for attention, for acceptance… especially now that I'm a crippled, huddled little bird. Oh I'll fight and flutter, all right, but is that simply wasting my life's energy to no end? I can't tell. Am I getting anywhere? I don't know. I'm so raw, so vulnerable, so exposed… so adrift on this stormy sea of uncertainty… So tell me, Hope, how can I know what to expect of people when I've never done this before? I've never been sick like this before, been isolated from friends and family by hundreds and thousands of miles before while having my independence so utterly and completely stripped from me. What would you have me do? What do you want from me?

I am doing the best I can, and exhausting myself with my efforts. It's all I can do to make it through the day. I don't have energy to spare to instruct those around me on how to relate to me. Let them, with their seemingly boundless reserves of energy (in comparison, anyway) figure it out. I'm too tired. Too tired, and too broken.

I just want to be accepted for who I am… rants, ravings, and all. Even if it is completely insensical to expect it from anyone.

Prolly more thoughts on this later, I dunno. Right now I'm just copying and pasting a post I sent out in one of my closer-knit fibro support groups this morning.

Well, I sure feel invalidated as hell this morning. I posted that AWESOME picture that I tagged y'all in (I'll include it here for those who I'm not friends with outside of the group) and not only does everyone think that I'm sitting here with a knife to my wrist apparently, I got a message in the wee hours of the morning and one that was there when I signed on this morning, and I dunno if you guys will catch the same vibe as I do but I'm totally getting the message that "you're too negative and you focus on your pain too much; knock it off and be cheerful, eh?" which is incredibly discouraging and angering and all kinds of things that I really just don't know how to articulate. Thoughts?

Last night's message: "Hello? I'm I don't know who you are and you don't need who I am but I am one of R's friends and somehow I've been able to see your posts on my bulletin... is something wrong? I've been kinda feeling down too but I shouldn't be.

Sorry so many typos on there lol.

I meant to say we don't know each other. I've been seeing the... negative stuff you've been posting. So I wanted... to know what was wrong... if you wanted to tell me. I can understand if you find it weird to talk to someone you don't know about something so personal but... I'm going to be moving out of AZ in May and I'mm feeling kinda down too so I thought it would be worth a shot."

This morning's message from a different person (Note: she had asked to be untagged in the photo because it looks bad for her, professionally as an actress.): "Yeah it was a cool piece but yeah most of the people who still use Facebook are actors directors producers etc so I stopped putting anything on there about pain or pretty much anything negative or if I do I try to make it funny. I stopped my blog a couple months ago my pain is what it is it's been two years this is where it will likely stay thinking about it just gives it power. Can I suggest something for you to read? Maybe you are not at a point where it's something yiu can absorb I wasn't ready when I bought it a few years ago read three pages and out it away but the secret has changed my life even before I read it. I started living the law of attraction and yes I still have a bad day but I'm very cautious about what I think and say bc what you think about you bring about. I'm a therapist and never got any if this but so much has changed w my pain my acting everythjng that I have to believe there is truth. Google it and try it for a couple weeks maybe it will help. I don't go to meetings lol I don't do anything other than watch my thinking patterns Just a thought from what I see in your patterns "

I responded, and I'll post that too if you want, but this response to MY response just makes me even more frustrated (but I KNOW that wasn't the intent, to attack, I guess I'm just sensitive???).

Note: Here's my response, for clarity's sake. "I get what you're saying, and that's something that I *do* try to live in my life. I'm very conscious of my thought patterns and I monitor my thoughts and feelings quite closely (hence why I blog and talk to my husband and besties all. the. time.). For me, though, it's more than just "don't think of negative things" whatever. I've learned that--and this is just for me, you understand, because I tried it the other way and it just made me miserable-- it is more healthy and productive to acknowledge whatever negative thoughts or feelings I have, think/talk through them, and then move on with my life. I don't wallow except on rare occasions, because everyone needs a pity party day once in a while I think, especially ppl who hurt all the damn time. But for me it's best for my mental and emotional health to acknowledge the stuff that ain't so positive, try to find something funny in it, and keep going.

The "don't think about negative things and you won't bring negative things into your life" dealie just doesn't work for me. And that's okay. I'm glad it has done a lot for you. For me, I put as much love and light out into the world as I can, and I get a TON back in return. But I don't dare gloss over the bad parts because it all just festers and creates "disease" in my life. Not the physical disease, of course (though our emotions and whatnot DO have an effect on our physical health as I'm sure you're well aware), but… oh, how to explain it? Anyway, I've known waaaaaay too many people that pretend nothing is wrong, ever, and we should only think and talk about positive things, etc. for me to want to go back to that kind of thinking intentionally. (And it could be that what I've experienced/read/seen is a distortion of what YOU are talking about… I mean, connotation is a hard thing to convey. You say "banana" and we will each have a different image that pops into our head and different feelings about the word though the core concept is the same. Try that with the word "love" or "happiness" and things get crazy lol) It's been my experience, working with abuse survivors, that acknowledging the negative stuff and processing it appropriately is what robs it of power, not pushing it away in favor of focusing on the positive. I believe that there's a balance of the two that can and must be achieved for optimal emotional and mental health. Maybe that balance doesn't always come across on Facebook, but this IS the place where a lot of my support system is located, and also where I try to raise awareness about the very real nitty gritty of what it's like to live with chronic pain, chronic depression, chronic illnesses and diseases, and PTSD and other abuse survivor related issues. On a totally unrelated note, have you ever thought about creating a facebook page strictly for your professional life? One of my artist friends has done that because of some of the same things you mentioned-- potential employers/buyers, professional peers, etc. It's a way for her to display her portfolio and other business related stuff without it getting cluttered in with her personal stuff or lost and vice versa."

"Thoughts are def hard to convey here bc yes I def still acknowledge the bad things and I've had a lot. I had a bad couple days and I have allowed myself to feel upset and angry it's more how I think about it that changed. I guess my perspective is different. I found out heartbreaking news about my ex acknowledged it would make me sad processed it talked to a couple people quickly but cautious of the words I used when talking about my future for me not the universe and then it passed. Everyone is different. I guess I've been thru so much bad in my life including men hurting me and pain obesity and have fought so hard I finally just found a balance or something that works. I don't tell most people about it bc it sounds too new age even to me lol. But I thought I'd ask but I get it's not for everyone. I'm also alone so I have to do things different. My support system is here but not much emotionally and I have no spouse or anyone to talk to or depend in to listen it say it will be ok. It's all up to me and that's ok. I've never been my own rock and I'm learning
Well I'm glad u have a way that works . Feel better"

So I guess I'm just super irritated because I'm always very self-conscious about how I come across, whether it's appropriate or if I'm being too negative or angry, etc. I know she's just trying to help, but it feels just as invalidating as someone who knows just what I choose to present to the world regarding my pain coming up and telling me that I've probably been handling it all wrong and this is what helped them and I should consider doing it that way. Wait, come to think of it… that's happened to me countless times, with all of my diseases. And my food allergies. And it pisses me off, guys! I'm just like, you know what? Even if I chose to be completely negative and wallow in my misery and my pain and my agony and not try to find the positive and do my best and find humor in the situation and be totally authentic about my struggles and where I'm at, that is my right. That is my right as a sick person and that is my right as a healthy person. So stop fucking telling me how to handle my shit, okay?!

I was so pleased with myself because I've progressed so far on acceptance of my fibro diagnosis and that I'm not going to find an underlying disease to treat and miraculously recede my fibro to livable, which is a hope that I was clinging to until the "just fibro" appointment earlier this month. I've come across some well of determination, hope, and inspiration that I thought had dried up long since, beaten down by the daily grind of such incredible levels of pain and other miseries, and life is looking up for me. And then… this.

Maybe it's no coincidence that just when I seem to be getting my feet under me in whatever battle I'm fighting (emotions, facing and processing and healing from abuse, fighting depression, my health, my food allergies, etc.) something comes along that tries to knock me on my ass again. Maybe I am just too open and authentic. Maybe I leave myself vulnerable to attack. Maybe I leave myself vulnerable to those who think they know better. God, why are there so many of those people in the world?!

Anyway, I'm quite irritated, angry, frustrated, guilty and not sure if it's legitimate guilt or totally illegitimate and false… Because of the crazy dysfunctional environment of most of my life, I have a hard time telling false guilt from legitimate guilt, and I tend to take on guilt that isn't mine and shouldn't be aimed at me at all. So I never quite trust the guilty feelings anymore, because I know that it quite probably isn't true or to be trusted. Generally, I'm above reproach. ;) So this is why I blog and openly put things out there in social media, to get the feedback of the wide network of people that I trust. I thought I could trust this chick; she's a fibro warrior too, a psychologist, an abuse survivor… but she took the opportunity to slip the sword between the ribs, probably all the while thinking that she was just helping me let out the bad blood and balance my humors! And that just goes to show that you can't trust everyone with your pain. According to her theory, I suppose I should stop this blogging and sorting through my thoughts. Which, as we all know, is baloney for me, as this blog is the thing that has helped me sort through my thoughts and feelings in a semi-coherent manner for years. I suppose that's what smarts the most-- the suggestion that my coping methods aren't good enough, that I've been doing it wrong this whole time and any progress I've made is incidental.

Enough ranting for the day, I suppose. I just had to get all this out there, and boy do I feel better! Whew. It's no longer roiling inside me in a jumbled mess, confusing me and making me heart-sick. Ahh. I seriously feel as though I can physically breathe better now.

Suck it, actress lady. You have your ways and I have mine, and mine are fucking awesome. And no, I'm not still bitter. :P

I finally pulled out my chalks and created something, though it wasn't what I expected to come out. I kind of expected an abstract, but a stylized representation of me, asleep, and nightmares creeping in is what came out. I've been dealing with a lot of nightmares in the past few days, horrible dreams where the ones I love are hurting and people are in pain and there's nothing I can do about it. Many of them involved injury, death, violence, bad people, and inexplicable series of events. Due to the constraints of my illness I can't resist the sleepiness that overcomes me, but I don't like to be there because I wake up aching on the inside and out. Sleep used to be my refuge, but it's become a war zone of late. I hope this is just a phase that passes quickly. It's probably the subconscious workings out of my tortured body and mind, the considerations of the future that terrify me and the thought that "ending it all" might not be so bad except for the pain it would inflict on others. I guess it comes down to the question of how selfish I am. Can I stand to offload all my pain and suffering onto those I love to gain a surcease from my own constant torture? Unfortunately for me, I am not inherently that selfish, but I can't say what rash decisions I might make in the throes of agony. You've been warned.

Rose and I have plans to meet up for a few hours tomorrow during the Celebirthsary weekend that Drogo and I have planned. She's out west for spring break and I'm up north for those two days, so what's the harm in going a few hours more northward to see my bestie? No harm; none at all. I'm SO excited. We've only seen each other for a few hours in the past two years, and though I love her mom dearly she kind of put a damper on our last reunion and it wasn't possible to just sit and gossip over a chick flick like we would ordinarily have done. I was happy just to see her, of course, but I'm looking forward to our reunion amidst the pines and fresh mountain air of the bible college we both attended and were roomies at. We were discussing the rejuvenating effect the wilderness has on us, and how we both come alive when we're able to go out and explore and adventure and just wander… and I guess that conversation brought home the thoughts that have been percolating in my head for some time. The sense of loss when I realize that I can't join her in a merry hike amidst the trees like I want to. Remembering that I have to be sure to pack my pain pills and my other meds and my walker and the footstool set up for my walker so that Drogo can push me when I am too tired/hurt too much to walk anymore. The reality of my situation crashing home, once again.

When I was told that I am dealing with "just" fibromyalgia and not any autoimmune disease of any sort, it was a brutal shock for me. I didn't think that it was possible for "just" fibromyalgia to so drastically affect someone's life, health, and well being in this manner. I was positive that there was something behind the scenes aggravating and inflaming the fibromyalgia symptoms. There had to be something else, something treatable, so that when we found it and started working on it the fibromyalgia would recede as well. That was my working hypothesis. It turned out to be false (unless there's something neurological at play here, which the twitchies would suggest, but who the hell knows anymore?), and now I have to face the reality that it's "just" fibromyalgia, something that is not taken seriously in many cases and places… and something that I didn't really take seriously, in all honesty. But now I have to face the facts, and that includes the fact that my misery is due in large part to fibromyalgia, a little understood neuro-immunological disease/syndrome, and none of the treatments for fibro have improved my situation at all. I've simply continued to worsen. When I learned that it was "just" fibro, the horrible  reality that came crashing home was this: I've had active fibro for about a year and a half, during which I have not responded to any treatments and have worsened dramatically. If I'm looking forward to years and years of this, if the progression continues on the same scale that it has in this past year and a half… will I even be able to walk by the time I'm thirty? How much pain will I be in by then?

There are certain expectations that I have, unless something dramatically improves, certain things I've had to grieve and come to terms with… that I'm still coming to terms with…

I cannot have a family. I can barely take care of myself, and I'm not so good at that, so a baby is out of the question right now. If I were to get pregnant and if I could carry the baby to term (something I've been unable to do so far), I would have to be off of all my medicines, including pain killers. How sick would I be, how much agony would I be in, and how would that affect the development of my baby? The emotions and state of mind of the mother affect the baby, as those things result in chemical secretions. I want to be a mom, to have a family… I broke down crying the other night, and while Khal Drogo was comforting me I sobbed my apology to him that I cannot provide him with a family like he wants. It's something we both wanted, part of our shared vision for our union and our future… and right now it doesn't look like it is going to happen. Maybe if I get some better, and my friend acts as a surrogate like she volunteered to do… maybe I can have a family in the future. We were going to wait several years anyway, to get financially stable and make sure that we can actually take care of any children we might have. No going into debt unless emergency dictates so, or strategic financial planning.

I would be a kickass mom. I so would. I have a strong maternal instinct, kids just gravitate to me, and I practically raised my siblings when I was far too young to have to do so. Did you know that one of my nicknames up north was Mother Goose because of how the kids flocked to me? It makes me smile every time. I love kids. I want to have kids. I want to be a mother, and it kills me that I can't seem to carry my own and that right now it looks like I won't be well enough to care for a family. How fair would it be to bring a child into the world when I can't adequately care for them? Not fair at all. I don't want to disadvantage my babies that way. I dunno. We'll see. I still refuse to believe that I'll never be a mother, and the timing isn't right for a family right now anyway. So this one is on hold. It's far too painful to believe willy nilly.

Okay, here's another one: hiking. I miss being active; long walks at night, day hikes, backpacking trips, just being out and about without paying for it for the next few days. I miss going on adventures, challenging myself physically… Hell, I miss cleaning my house. I miss being able to do stuff myself, instead of relying on others for assistance. It is so infuriating to have to wait for someone else to get around to doing what I would be able to do seven times over in the time it takes them to get around to it (because people have their own lives), and I could do it so much better than them to boot. I have such good intentions of just gritting my teeth and doing a little bit at a time of the things I want to get done… but when the time comes I'm just so tired and nauseous and dizzy and I hurt and I just don't want to do it. It's like trying to function with a really bad flu, and it sucks.

I miss being independent. I am so reliant on other people and it kills me. I used to be the one that did things, that took care of other people, that made things happen… and now what? Now I don't. Here's another one: working. I miss my work as an admin assistant/office manager and peer support group leader and advocate. I miss being able to contribute to the home financially, but more than that I miss being able to make a positive contribution to the world around me, to my community, to the lives of broken girls and women. I miss giving. If life were fair, I'd be able to receive just as much as I gave, but that's kind of in short supply… there are a few key people who help out as they can, but for the most part I feel pretty abandoned. It's like, if you can't do anything for people then you get pushed to the back of the list. I can't claim that I didn't do the very same when I was still capable; I can't remember. And that's just the thing… I get forgotten. Left out. Left behind. I'm needy now, and an awkward burden to carry. I would love to say that I don't blame people for it, but the truth is that I'm super bitter about how little help I get even when I ask, which is a hard thing for me to do. I did find a friend that has committed to helping me clean and cook for a few hours every Saturday, but I'm skeptical as to whether that'll last or not. It's not exactly thrilling, sweeping floors as I hobble around helping where I can. I notice that people tend to not like being around a young person that's ill and un-fixable. It reminds them of their mortality, how misfortune can strike at any time and any age, and that's just a plain ol' downer.

I have to air this out, but only this once because I feel really ungrateful and like a jerk for even having an issue like this… but I'm really ticked about my birthday party. It was so much fun and I had a blast and I was so happy to have so many of my friends over… but so many of the people I invited didn't come. The ones who did show up are the ones that are the most consistent ones in my life, the ones who show up even when there's not cake. But the ones who didn't? They're the ones who claim to love me and we were close, once, for the most part… but they couldn't even be bothered to come to ONE thing? I don't ask for much, I don't think, but this was really important to me. I don't get much of a chance to have a happy, fun day. Most of my days are pretty flat and painful, sprinkled through with little things that make me smile. I have to hunt for them, though. See, about the people who didn't come… every person who bothered to make an excuse had a good one… but they all had excuses and didn't/couldn't come… and that hurt. A lot. Just another example of being shut out, left behind, and forgotten. Ouch. I'm also upset that I had to throw myself a birthday party. Like the logic doesn't even work-- everyone knows that I'm really sick and have a hard time with basic life, but it's left to the girl who hasn't even been cooking because it's too much to plan and execute a party. People knew I wanted a party, but as the saying goes, "If you want something done, you have to do it yourself." Not only did the sick girl have to make her own party happen, but the majority of people didn't even come to the thing that took so much effort and destroyed me for days upon days. Not cool, yo. Not cool.

I'm terrified that it's all in my head, and my limitations are self-imposed. I don't deny the physical aspects of this illness, not at all. But I am afraid that my "can'ts" aren't derived from past experience like I believe them to be but are rather mental constructs sprung up from who knows where. Maybe if I just tried harder I'd find that I really am not as crippled/disabled/sick as I thought? Maybe I just need to push myself more.

I guess I could go on, but the gist of this thing is that I'm reeling. Not only is there not something treatable lurking in the background, but this thing that I have has not responded to any treatments in the past or present. My year long sabbatical from the Healing Journey to get better? It's probably a permanent thing. My whole attitude of "just wait until I get better and then I'm gonna _______" is pointless, because there's not a "get better" phase to this disease that I can tell. I'm stuck like this, stuck like this forever… and I'm only 26. How many more years of untold suffering await me? I can't really think about that because it sends me spiraling into a panic attack, and do you blame me? Maybe you haven't seen my pain blog (which I only update sporadically now, because none of the doctors ever look at it so what's the frickin point?), but it's a dismal portrait. That… for the rest of my life… and likely to get worse. 

I need people. I need people to do random acts of kindness, to help with basic life activities, to listen to me vent, to throw me parties and buy me Arizona green teas and encourage me to exercise (and help me with it!) and all that jazz. I need people but I feel like I'm standing in this great void where my friends used to be. I do have some very strong supporters… but they live hundreds and thousands of miles away. They play an important role, to be sure, but I need people here. That's the part of my support system that's sadly lacking. I know, I know… people don't want to overextend me and make me sick or interrupt my naps or impose when I'm feeling poorly… I've heard that from my grandparents several times. Here's the thing, though… I don't feel good. Like, ever. Once in a blue moon, but it doesn't last long. If you're waiting for me to feel better before you interact with me, it's never gonna come. That's why I need you. I need help. I need love. I need friends, and I can't come to you. Can you understand that? Do you know what it's like to see your car out the window and know that it's just not safe for you to drive, to know that you're as stranded at home as if you had no vehicle at all? It's awful. I'm stuck here, and unless people come to me I don't see anyone. I'm that crazy old shut in lady at the end of the street, and I haven't even hit thirty yet.

"Just" fibro. "Just" a life sentence of pain, sickness, isolation, and the fight against depression.

Can you comprehend what it's like to know that your life is over at 26? The life I had planned is gone. It's like I died. Cassandra is dead, and I don't even know who I am anymore or what I can/want to do with my life. I was going to be a massage therapist. I was going to visit all 50 states, to travel overseas and try different foods and see art museums and antiquated buildings. I was going to have a family, have children. I was going to be a licensed peer support specialist, a licensed suicide prevention… person. (What are they called? Brain fog.) I was going to be the office manager for the HJ's new location, be the other half of the organization's head even more than I was before. I was going to hike all the way to Telegraph Pass. I was going to backpack from one rim of the Grand Canyon to the other. I was going to go to Alaska and hike in Denali Park. I was going to raise a garden in my backyard. I was going to unpack and organize my fucking craft room! There is so much that makes up Cassandra, so many dreams and ambitions and tightly held hopes… and they're all rendered pointless or impossible now. Maybe after some time has gone by and I've grieved appropriately I will challenge that word "impossible", but for now… the reality that I've been handed is very bitter, and I'm not sure how to handle it. I want to go hiking with my Desert Rose tomorrow, but I know that's not going to happen. I will feast upon her cinnamon rolls because gluten is a thing that's happening in my life again, and I am incredibly grateful for this (even if I am slightly allergic to wheat). It's so nice to have real baked goods again, and I've never gotten to taste Rose's baking. That's one dream that I can fulfill, at least.

Goodbye, Cassandra. Hello… whoever you are. Strong, fierce, stubborn, broken, sad, implausibly hopeful, beautiful, giving, intelligent (despite the brain fog), creative, flexible, sexy, hilarious, needy, angry, still standing despite it all. I feel empty inside from the wrenching away of my future, but I still have good things swirling around the ragged edges. The gaping, cavernous wound will heal with time, I'm sure, but for now… it hurts.

Looking through the pictures from my party. The party was fun, everyone had a good time (I think), but I'm sitting here crying…

I've gained so much weight.

I'm so sad.

I've tried so hard not to gain this weight… to be healthy… to stay pretty and thin… to accept myself as "thick" or "curvy" or "big", and beautiful besides, but… pictures don't lie. (How does Drogo even pretend to still find me sexually appealing?)

I'm pretty fuckin' devastated.

Want an example? Here.

And now, for contrast, almost exactly a year ago…

That is what I'm used to looking like. Not the other one.

I hate this. I hate being encased in this blubber suit. My endocrinologist is worried about my thyroid, so we upped my dose. I don't have anything to worry about with the adrenals; we're monitoring those. My thyroid levels are good, but this inexplicable and seemingly unstoppable weight gain is a sign that something's up, somewhere.

You guuuuuuys… this may be shallow and petty, but I'm seriously very distressed and distraught over this. I hate being so out of control in every goddamn aspect of my life, even something as seemingly insignificant as my appearance.

I swore that this whatever-it-is wouldn't ruin my special day, my one special day, and it didn't… mostly. I didn't get to everything that I wanted, but I got enough done that it all worked out. It didn't mess up my day, though I was very tired and hurting (and I'm hurting like HELL right now… it's like, 8.5+ and I'm hating this), but it damn well has messed up my life, and I'm pissed.

I'll do a birthday recap later. Right now I'm too upset over my double chin, moon face, and gut. The enhanced bosom I can deal with… everything else, though, has gotta go. I'm doing my best. That's what kills me about this whole situation, is that I'm doing my best… and it's still not good enough. Not by a long shot. :'(

(For a glossary of "characters" and their nicknames, check here.)

I've been putting this post off for a while, because every time I think about sitting down and typing it all out, I'm just overwhelmed with the effort that it will take and I figure I'll do something easier. Did you know it takes energy to feel things, and more energy than that to actually process them or record them? Yup. Lots of energy, both emotional and mental, and most times it's easier to just say, "Ehhhh… I think I'll go look at funny pictures of cats, instead."

However.

I do need to get this all out there, because negative thoughts in my brain are like a poison that infiltrate my daily workings without my really being aware of it, and they taint my reality. So it is important to me to get it all out there, outside of me… where I can evaluate it more intellectually, without the ineffectual whirrings and endless cyclings of my thought processes. I've been trying to get it out, verbally, with the Dragon, but that hasn't been going so well. I've been very moody to boot, because I've got all these fears and feels and crazy thoughts all just tumbling around in my head and I'm desperate for consolation and affirmation and someone to set me straight and tell me that it's all gonna be okay and that I'm wrong and I'm amazing and all that jazz… but that is definitely not Drogo's strong point. It's okay. I know who I married, and while I may be frustrated by it at times I have acknowledged from the get-go that affirmations are really just not something he does well. But since he's my husband and my mate, I instinctively look to him to fill my needs (especially as he's the one around most often), but I realized recently that I've been asking too much of him, asking him to fill a thousand different roles that can and should be filled by a myriad of people. No one person can be everything to another person, and it's silly and futile to expect that… but I kinda have been.

It doesn't help that I'm a shut-in, so unless people come to me… nothing is going on. Also, it takes energy to reach out and ask for help, and often it doesn't feel worth the effort. I want people to just know that I need help, and that I need it all. the. time. and to just kind of… do things that help. I'm tired of asking for help, if that makes sense. I just want to be taken care of. I'm tired. So tired. Tired of phone calls and doctor's appointments and medical bills and futile attempts at keeping the house tidy and being stuck at home every single day and feeling like I should be doing so much more and better when really all I want to do is curl up and hibernate and have someone else come deal with my life for me so I can focus on just being sick and hopefully getting better. (Essentially? I just want to be a house cat.)

Right. So there's all that. But anyway, I realized that the glories of the internet mean that I can reach out to my friends that are scattered across the country and dump on them instead of my husband! Genius, right? So that's kind of my plan… is to spread my woes a little more thinly and evenly across the network of "people who give two shits about me" and ease some of the tension that I've introduced into my marriage. Being married with (and to someone with) a chronic illness is hard. He's doing an admirable job. I just have a ton of feels that I don't know how to deal with and neither does he and so we're left with a bunch of elephants in the room, but if you've seen my living room then you know that it's barely big enough for the furniture we have in there much less a bunch of elephants and so it's pretty crowded and we're both on edge.

The other day we were in line at the bank and I started talking about how I feel and the negative thoughts rattling around in my head, but Drogo told me to stop talking and wait in line quietly. Why? Because what I was saying was bad and not true and he didn't feel that I should be giving power to those thoughts by speaking them as though they're reality. He told me to "write about it". So here I am. But see, the thing is, I already wrote about it the other day to Rose, so I'm going to do some copy-pasting here in a minute… but first I want to bring up a couple of things that I haven't really discussed with anyone, save Drogo (briefly) and one or two of my fibro friends (again, briefly).

I'm terrified.

That's no secret, but the thing is that there are many things I'm terrified about. The one that I haven't really voiced to many people yet is this: I'm so, so, so afraid that there's nothing else wrong with me, that it's "just fibro", and that there's nothing fixable or treatable about my situation. I've tried all the fibro meds, and they did worse than nothing. I'm still on gabapentin, a fairly high dose, but my pain is still at high levels most of the time. I stretch and exercise a little every day, I eat as healthy and simply as I can, I hydrate, I tried yoga (which I still do because I love it and it feels awesome sometimes), I tried acupuncture and massage and Kangen water and yes I take B vitamins and my vitamin D levels are good and so are all my other mineral levels… I do all the right things, but I am still getting worse and worse… and if it's "just fibro"… then it seems there's nothing I can do about it but hang on for the continued decline and hope that I die before it gets too terribly miserable. (I keep saying, "I don't know how it could get worse… how could I possibly feel worse than this on a regular basis?" And then it happens, and then I'm sad. And round and round the cycle goes.)

I'm scared that we'll never find out what is really wrong with me and I'm just going to get sicker and sicker as Drogo stands by, watching helplessly.

I'm scared that I'm going to get worse and worse and worse until I'm basically just a sad piece of meat with a pretty face that can't even go to the bathroom by herself.

And then there's the existential crisis part of things… and this is where I'm going to copy and paste from my conversation with Rose, because why explain things twice when the first time was eloquent enough?

"Speaking of rehashing stuff… I've been having a very hard time lately with my sickness and disability.

Maybe because I got the news it's not lupus… because now I STILL have no answers… and the thing that seemed to fit so well (albeit a horrible fate) just isn't, and I don't know what it is and I'm really afraid that it's all just in my head you know? That, like, somehow I'm making myself sick... And I'd stop it if I could, but I don't know HOW.

And I'm afraid that deep down I don't really want to stop it because this kind of gives me a free pass out of life, you know? And responsibilities.

Blah. I dunno. It's just so HARD to be sick all the time and not know WHY and not know how to FIX it and for even the meds that are supposed to help to not really be effective… and to wonder if I'm just going to keep going downhill until I eventually die of some mysterious cause?

And I'm just like… what kind of a wife am I? Kahl Drogo married me expecting to have a partner in life, to have babies and make a family… and he got THIS.

I feel so LOST. Especially now that I can't even do the healing journey anymore. Like, what's my purpose for even being here? What is the point of my life? What good am I? I guess it comes down to intrinsic self-worth. Now that I CAN'T do anything productive, really… who am I? What am I worth? What can I contribute to the world?

“It must be really tough to not feel like you're contributing to the world”

Yes, it is. I don't know what to do with myself besides sleep… I've started doing at least 1 run through of Sun Salutation (a yoga practice) a day, and that makes me feel a little better about myself… like I'm being more proactive about my health… and my weight.

I've gained more weight. I'm trying *REALLY* hard to see myself as a good, valuable, lovable person, but… I accomplish very little, I look different than I used to and how I feel that I should.. I basically feel like a failure as a human being and a woman.

Like, by the time Drogo gets home I'm usually feeling so terrible that we don't even have sex hardly at all anymore. And I think that hits me the hardest. I know it's because he cares about my physical health and doesn't want to make me feel worse (and sex often does have a backlash on me and I kinda flare), but I have a hard time not believing that it's not because I'm now an unattractive, heavy person.

Oh Rose… I'm just so lost right now. It's so HARD. LIfe is just HARD, and I can't understand why...

I have SO MUCH to offer the world, and I'm trapped by my body and my circumstances and it's NOT FAIR.

Like, why me? Why not G? Why not people who do terrible things?

I've only ever kicked a kitten on accident, I swear!

And I'm just so lonely...

Oh Rose… life is just so hard.

And I don't know what i can do about it, if anything.

At least I don't actually believe the person who told me that I got sick because I left God.

It's just really hard to find reasons to keep trying.. to keep waking up every day… to keep living.

And that terrifies me.

And what scares me the most is that, based on personal experience… I can only expect this to get worse. How much worse can it get? I can never imagine how I can feel worse, but then it comes and I do...

How long am I going to have to live like this? The rest of my life? Is my health just going to keep deteriorating for unknown reasons for years and years until I'm basically a pain-wracked vegetable?

Rose, I want to have kids! I want to grow a garden. I want to hike the Grand Canyon rim to rim. I want to travel to Italy with my babies and feed them awesome food and show them old buildings and wonderful paintings. I want to make my family pancakes on the weekends and keep the house clean so my husband WANTS to come home to his happy family… I want… I want so much.

I just… I don't understand. And that's okay. I know I don't have to. I just wish that I had something to cling to...

Even when I was a Christian...

there wasn't much hope for me, sadly.

Just the fear of what would happen if I didn't do it all right. I know now that that's not the way.

Someday I'll find it.

But I still believe in God… in higher purposes…

but I just don't see how my being unable to contribute to the world serves a higher purpose.

So anyway… now that we've hashed… lol. I'm just having a hard time lately. Drogo knows, he understands, and he's been good about it. Really good.

We talked about how I'm less physically capable than I was before, as much as I hate to admit it, and I need help keeping the house somewhat tidy since that is VERY important to me. (And let's face it… I have to look at it all day lol)

So now he is in charge of sweeping the floor every other day or so. And he also *finally* got on the ball about the water leak in the front yard and we went to Lowes the other day and got a rake and a shovel.

Tomorrow he will probably get some of the guys over here to help, but he's going to dig up the front yard and see where the leak is coming from and fix it. It's been a month or two in the "putting off" phase lol"

And that's where I am. I'm scared, I'm lonely, I'm overwhelmed, I'm really sick… and I'm so tired. Tired of fighting. Tired of having to fight, each and every day for… for what? I'm lost. I'm lost and lonely and fighting to feel like a decent, worthwhile human being.

And you know what else? I didn't mention this to Rose, but I'm angry. I'm very angry. I'm angry that I've been "struck down" and so many other people are free to do as they please with no physical ramifications and they feel fine and they can go about their lives and work and have fun and raise families and I can't and I don't know why and it's not fair because I'd be so amazing at all of those things!! I'm angry because the Dragon has the physical capabilities to do anything he wants… but he doesn't. I mean, he does do what he wants, but he doesn't do what I would do if I were to have his health. I'm angry that he gets to be healthy and I don't, angry that he is healthy and chooses to put stuff off anyway, angry that he's fine physically and he doesn't automatically step in and take care of me… angry that I have to ask so hard for what I need when he can so easily provide it… angry that, after months and months of asking, NO ONE in my circle of healthy friends has stepped up and helped me straighten up my goddamn craft room!!

I'm furious that I'm at the mercy of everyone around me, and it doesn't feel like people really understand that or care as much as I'd like and need them to. I'm furious at how helpless I am, how lonely I am, and how I'm powerless to do anything about it when I used to be such a powerhouse of getting stuff done and helping people and being there for others…

People I know keep telling me, "Oh yeah, call me when you feel better and we'll get together!" Folks, it's not happening. I pretty much don't ever "feel better". I have about three modes: feeling bad/poorly and worn out; feeling awful/exhausted/all I can do is sleep; Please Kill Me, You Would Be Doing Me A Mercy. So if you want to see me, you have to come to me. Come pick me up, take me someplace. Call first, see if I'm sleeping or feeling abysmal, and if I'm not I'll probably come with you as long as you are the one making the effort to drive, make plans, etc. I go with Drogo on errands on the weekends, even if I'm feeling really gross, just because I want to spend time with him and that's my one chance during the week to be out and about. I may drive to and from a doctor's appointment some time during the week, but that doesn't mean I'm "out and about". I'm trying to scrape together enough energy to make it there, get through my appointment, and make it back home safely so I can collapse on the couch or into bed.

If you miss me… show me. Come to me, because I can't come to you. A few people do. But not most of them. And that both angers and completely engulfs me in grief. I've had friends tell me, "You're isolating yourself. That's not good. You need to get out and do stuff again; get involved." Oh, I would if I could. Maybe I am isolating… but not by choice. And I'm furious about that.

So please, those reading… feel free to comment with some affirmations. God knows I could use it right now. My body always feels like junk, but it's hard to have your heart and soul feeling gross, too.

Survivor's guilt. Wikipedia says, "Survivor, survivor's, or survivors guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off."

 I think that chronic illness fighters deal with a type of survivor's guilt, though it's not the standard definition. I mean, we have survived a traumatic event in a way, as our illnesses frequently strip away even the vestiges of our former lives, carving us into a hollow shell of what we used to be and planned to be. The guilt, though, lies not in the fact that we have survived and others haven't (in the sense that we lived and they died), but in the sense that we have survived and they haven't had to learn to survive this at all. We feel guilt because we do things differently to survive, and we no longer fit in with the lockstep of "normal" expectations. I feel guilty because I am a survivor, and I do whatever I have to to make it through the day. I feel badly about myself when others around me do not have to take such drastic measures to cope with the daily, minute stressors, when they are able to sally forth into the dawn, skipping meals and losing sleep and still able to put forth energy that comes from some boundless spring. Sure, maybe it's not as boundless as it would be if they properly tended it, but I have to concentrate all of my efforts and planning and foresight into cultivating the same trickle that they get when they carelessly wander through a day.

I feel guilty for surviving on my terms. 

I feel badly about myself when I don't have a concrete answer to hand out to people when they want to know what's wrong with me. I can't adequately combat the well-meant suggestions because I don't know if it would work or why it didn't work when I tried it, because I don't really know what's wrong with me.

What do you say when someone asks if you're feeling better? I smile, I make something up, and I feel guilty. I survive, however I have to.

I take my pain pills, knowing that they're damaging my body and not a long term solution. But what can I do? I went without for less than 24 hours and I was so sick that I could not sleep or eat, in addition to the ripping pain. Even now, I'm on my proper dosage but I've got this ever-increasing migraine pressing down on me. I know that a vanilla coke will go a long way towards setting me to rights, and I know that some folks would disagree, but I'm surviving.

What gets me the most is when I have to make the public appearances, to go out and do stuff, and people see me and think that I feel better. They have no concept of what I mean when I say that "I'm sick a lot. I'm sick right now." They absolutely cannot fathom the levels of energy that I'm losing just by sitting in a crowded room buzzing with conversation. They don't understand how much it takes out of me to sit in a chair and focus my attention on a stage, on the words being said. When I say I'm tired and I want to go home, it's not because I'm bored, or a little fatigued from the day's efforts. No, I mean that it's probably dangerous for me to be driving but I'll do it anyway because I have to. I mean that I'm having a hard time focusing my thoughts on conversation and it is difficult for me to focus my eyes. I mean that my body aches and my stomach is as upset as if I had a stomach virus. I mean that there is a thick, wet blanket between my senses and the world they're supposed to be interpreting. I mean that my pain levels are spiking, and I'm likely employing breathing techniques just to keep from groaning aloud. I mean that I can feel that I am going to be punished for this in not too short a time, and I don't want to be around people when it happens. I don't want them to see me at my weakest; it will just alarm them. I don't want the energy drain that comes from being around people, any people. (Except my husband, oddly enough...) I don't want noise, I don't want conversation... I just want the comfort of silence, my cats, my couch... familiarity. Comfort. Cool quilts against my face. A glass of water at hand, a mug of peppermint tea for my inevitably upset stomach. Dim lights for my aching head.

And so I try to leave before I get to that point... but I feel guilty. I feel guilty because I'm surviving, however I have to. I hate being in that place, the crash after the adrenaline-fueled outing. I'll do what I can to avoid it. And yet, so often... I feel guilty for surviving on my terms.

Why? I know why.

It's because I don't believe myself.

I know my body. I know my pain patterns. I can tell when I'm getting sick, when the pain is spiking, when I NEED another pain killer to stymie the big spike that's coming that kicks off a cycle of uncontrollable, fully body pain. I can tell when I need a nap. I can tell when the autoimmune side of things is flaring. Granted, there's still a lot I don't know, but there is also a lot that I've gotten good at pinpointing. I know when I need to eat. I know when I need to sleep. I know when I need to stop doing an activity. But all too often... I ignore myself.

Why?

Because I minimize. Ohhhh, do I minimize. I catch myself doing it when I do presentations about my abusive past. It wasn't really that bad, if you think about it. I mean, all that happened was... Did that really happen? I think I'm probably exaggerating what happened. It wasn't that big of a deal. I need to just get over it and stop assigning so much importance to little things.

I didn't realize how much I minimize until C and I were discussing some of my symptoms, and he mentioned my need to eat frequently and right. when. I'm. hungry. If I delay, I get very ill. He's seen it. It's not a secret. It's something I've been dealing with since my teen years at least, and it's just one of those things that we work around in every day life. And yet hearing him describe what happens to me when I get sick from lack of food, well... it was... empowering. It was like a light bulb went on in my head and I thought, "Aha! It's real! I really do get sick! I get very sick, and someone else has seen it! Wow... that sounds terrible. That's kind of a big deal. Huh."

I had a big tussle with minimizing after my rheum blatantly stated (twice) that she didn't see the need for me to be using my walker. I came away seriously questioning myself in many aspects, wondering if I've been wrong and just exaggerating my symptoms all along... if I can really trust myself to know when and if I need something... because, after all, she's a doctor, so she must know, right? I felt guilty for surviving. C tried to put that to rest, assuring me that I use it and my pain meds wisely and judiciously, and that I know my body. He stated emphatically that I am not a wimp or a complainer (which is a great fear of mine-- perish the thought that I should ever become a weak, dependent, whiny loser like G!), and that I know myself. I know what I need to do, and I do it, and the doctor can go fuck herself. I'm inclined to agree... when I'm thinking straight.

My emotions and the self-talk going on in my head tend to get all tangled up in a tangly ball of tangledness, and it gets messy up in there. One of these days soon, I want to draw up a list of "what I tell myself" and "what is, a.k.a. the reality of the situation". Kind of like a cross-referencing chart, you know? So that when I begin to tell myself a certain thing, I can look at the chart and say, "Nuh-uh, that's not how it REALLY is!" Then I can follow that up with the truth. I'm excited for that. I just don't have it in me to create that right now.

I went to an awards ceremony for contributors to the local community because I nominated THJ as non-profit of the year, and we made the cut into the final category! We didn't win, but we still got an award for making it into the nominees. One of our volunteers was also nominated for Volunteer of the Year, so she got an award too. It was a fun chance to dress up and meet a lot of important people, but I'm still getting over being so sick yesterday and I was drained and ready to go home by the time the mingling hour was done. By the time I left I felt pretty bad, and I am definitely being punished for my outing. But you know what? It was worth it. I have some thoughts on my boss's own chronic illness and pain and how that helps/hinders our working relationship and friendship, but now's not the time. This is long enough already. However, I'm not working tomorrow because I did tonight, and that's a whole 'nother load of guilt. She's all sick and in pain too, but she works herself into the ground from her home office... while I'm at home, lying on the couch. I'm sick, she's sick, but she's the one doing so much work... and I feel guilty for surviving however I must. But I must remember that working myself into the ground and possibly ending up hospitalized doesn't do either of us any good. I'm trying to cope long-term, here... trying to survive in length. But oh, the guilt...

I know it's there. I know partially why it's there, even. But what I haven't figured out yet is how to be rid of it. I think that chart would help. I need to set the Should Monster straight again. It's been too long.

It's an interesting thing, chronic illness and pain. It forces you to take care of yourself in ways that most people don't even have to consider. Yesterday, for instance, I noticed the beginnings of an IBS flare (and a brutal one, by all indications), confirmed by today's symptoms and pain levels and placement. So now I have to be really careful in food choice and hydration. I've got a soothing tea steeping right now, and I'll probably try to pick up some safe bread later on today. I've still got a few bucks left from my last paycheck.

It's funny, how far I've come in the whole "taking care of myself" thing. I'm glad I learned so much about being kind to myself and loving myself and that I dropped some of the self-hatred when I did. The pre-kindness me would have been thrilled at so many ways to inflict self-harm and pain.

It's still difficult, knowing how to take care of myself... dispelling the twisted conceptions that lurk within my psyche. I struggle with pain management, not because I like being in pain (unless I'm going through a particularly dark time) but because I don't feel as if I'm ever in "enough" pain to warrant lessening it. I'm failing somehow, showing weakness and proving that I'm worthless or unworthy when I take a pain pill. There's always the thought that I could have endured more, for longer, and that I should have. Funny that I should have this mindset when everyone around me is prodding me to just take the damn painkiller already! I think I know where the seeds of this thought process come from, at least in part, but that doesn't make it any less potent or damaging. It's an evil little lie, one that I fight with on a daily basis. Multiple times. All the time.

I'm really grateful for the anti-depressant that my doctor put me on. It has helped to even out the ruts and valleys that I used to fall into so often. Just look at my blog entries! There are times when I'm down, to be sure, because of the pain or because I'm grieving or what have you, but the senseless spirals into darkness? Gone. I had already gone a long way toward alleviating them with the work I did with my last counselor, but this was the last puzzle piece, I think.

I have a friend, D, who is struggling with her past and the trauma it has inflicted on her. I hear myself when she writes to me... at least, where I used to be. It shows me how far I've truly come. I mean, I'm with myself every day, so it's more difficult to see a change, but man... it's gratifying to know that all that shit I had to wade through... there has been gain. I'm in a better place now, I really am. (And part of me is terrified to write that, because just when you think you're safe, BAM! Something happens to prove you wrong. I'm afraid that I'm going to get hit with a terrible wave of depression or that something awful is going to happen to someone I love.)

I can see that I still have work to do. But that's okay. Healing is a journey, and I know I'm not at the end of the road yet. That's why I keep going to group, keep reading books. I sure wish I could get back in with a counselor, though. That'd be nice... especially with all the crap I have to deal with with these damn illnesses. They've taught me a lot, though... and I guess I'm (grudgingly) grateful. Heh.

Last night was a bittersweet success of sorts.

After being so agitated and just plain burnt out, I realized that I needed to meditate. As I sat there, focusing on my breathing, I began to tear up almost immediately. I breathed through it, but a few minutes into my practice I really began to sob. It was unexpected, but instead of fighting it I just sat with it, listening to my body and heart to find out what was the matter. I realized that I was just tired, so very, very tired, and I had been all day. I had been pushing myself since I hauled myself out of bed that morning, putting one foot in front of the other to achieve what I must. Obligations cannot be ducked, not all the time. So I was tired, and I just didn't have enough anything left in me for anyone... even myself. I knew C would be home soon, but I didn't even want to see him. I knew I couldn't greet him with a kiss and act happy to see him (I say "act happy" because all other times I am happy to see him!). I didn't have it in me.

But it was okay. I just kept breathing, and it passed... and then came back again. But it was okay. I continued to breathe, and just accept it for what it was, rather than trying to push myself to feel a certain way. I think that's one of the biggest things I've taken away from this past semester and my foray into a personal yoga practice... learning to just accept, rather than trying to force change or "shoulding" myself or a situation.

Anyway, C came home while I was still meditating, so I cracked open an eye, smiled at him, and returned to my breath. He came over and scrutinized my face, however, and saw that I had been crying. When he asked why, I told him the simple truth. "I'm just totally burnt out, and I need someone to take care of me because I can't take care of myself right now."

The rest of the evening, C made it a point to kiss me, cuddle me, hug me, and caress me at random and fairly frequent intervals. When I commented about how much attention he was giving me, he replied, "You need it." It's true. I've been feeling very lonely lately, rather needy, and a bit distanced from C on his part. (Struggling with depression in more than a minor way.) It was nice to be physically coddled, and I enjoyed it. While sitting on his lap at the computer, he stroked my back with his hands, and even though it kind of hurt (damn fibro), I didn't say a word because it felt so good to my spirit. (Okay, here we go again with just "sitting with my emotions", because as I write this I'm tearing up a little. I think it's grief about what fibro has done to me... that it would hurt when my love caresses my back. That both pisses me off and saddens me greatly.)

We also agreed on a date tomorrow. I believe we'll be going out to a late lunch and then strolling through old town at our leisure. It will be nice to dress up a little and just spend some time together outside of the house, besides moving or running errands or doing laundry. We went to the movies last Saturday night, and I enjoyed that very much. It's easy to forget about being intentional with time spent together, and I don't always need "dates", but I do right now... so that's what we're doing. (Also, C finally exercised marital privileges, so I feel much better. Sorry for the tmi to anyone who feels that way about it, but you would not believe how much being deprived can affect you. It's pretty crazy. I think sex is an important part of a healthy, balanced life, and I'm not ashamed of it. Not anymore.)

Small victories. Bittersweet successes. Such is (fibro) life... and I'm grateful for what I've got.

This is a topic that's been on my mind off and on for, well, a really long time... as long as I've been actively fighting chronic illnesses, that is. So... years? Don't think that my battle began with fibromyalgia, far from it!

I've always been "sickly" in some ways. Asthma as a kid and teenager, low energy levels and high need for sleep with a very difficult time getting up, leg pains throughout life... I just assumed all this was normal, and that I kind of sucked at life for not being able to soldier through as everyone else must be doing. I looked at the sporty kids in my high school, the ones that could run the mile without difficulty, and I wondered how they did it. I didn't know that there was something wrong with me, that you're not supposed to feel that way. I remember helping to plant a tree during Bible college, and just ten or fifteen minutes of the exertion of digging left me feeling cold, lightheaded, nauseous, weak, and trembling... yet I kept digging, because my partner was still digging. If they could continue, I could continue. I assumed that they were feeling the same way, but they were tougher than I was. Wrong. I didn't know that exertion isn't supposed to leave you feeling that way!

During Bible college is when I really began getting sick, and the gastrointestinal issues came to the forefront. I powered through as best I could, knowing that I was very sick in some ways, yet not knowing that I was abnormal in others, and a few months after graduation I finally found out that I was allergic to a bunch of different foods and that I had bad hypothyroidism. The next few years were a constant battle with my energy levels, my guts, and also my mind. I started working through my past abuse, all the different flavors of it, and I noticed that as I healed emotionally I also began to heal physically. But I was still sick.

I had reached a place of reasonable stability when the fibro reared its hideous head and began to drag me below the surface of functionality. I'd somehow always managed to stay afloat before, usually motivated by a fear of rejection and sheer stubbornness combined with economic necessity, but now I was sinking, and fast. Since last fall, I've found myself in a place where I require naps on a regular basis, I have a walking aid with me at all times when I leave the house, I regularly rely on painkillers to make it through a day (judge me as you will), and I still struggle with eating and digesting food in adequate amounts. And yes, I even have a handicap parking tag hanging from my rearview mirror. (Which is the bomb, by the way!)

This isn't to say that all is doom and gloom. I do see myself getting better in increments, and I think the Long, Dark Slide Into Oblivion is finally over. Now that I've recovered from the wedding stress, I feel like I'm taking incremental steps back up that figurative stairway that I had been so rapidly descending, and that encourages me! Mom told me today that for a while she began to think that she might have to move out here and just take care of me until I eventually died, that's how bleak the outlook was. (To be fair, she was also worried that I had cancer and they just hadn't caught it or something.) I assured her that I've stabilized (for now), and that I feel as though I'm improving some. I think that helped to put her at ease a bit.

The possibility of returning to my "old" self, or even better, brings me to a painful realization, though, one that I am actually quite loathe to face. It sounds kind of silly to admit even silently, much less to put into words on a page, but... I'm scared of getting better. No, really. I am.

Honestly, I've gotten used to being sick. This has become my reality, my daily battle. When it's "gone", when I'm better, what do I fight against then? What do I aspire to? Life is so simple when it is distilled down to "get better". That's what you focus on. That's the dream, the goal. It's the gatekeeper of other dreams.

I want to travel to different countries and experience different cultures.
I want to try sky-diving.
I want to have a baby and raise it.
I want to have a fulfilling job that I enjoy.

But those things (except for the job, maybe) are not things I can do right now. They would destroy me, and possibly those around me, were I to attempt them now. First things first, I must "get better".

I know it sounds like I've let the sicknesses become my identity. Like I'm saying, "Without them, what am I?" Maybe it's true. Maybe I have. I'd like to think that's not true, but I do know that as long as I'm sick, people consider me to be a fighter. People have this certain idea of me as a person, but when I'm not sick anymore... who am I? I am me, but I've lost a part of what made me "me" for a while. Sure, I can say that the fight doesn't define me, but... doesn't it? Not wholly, no, because I am so much more than a fibro fighter, or a UCTD fighter, or a hypothyroid fighter, or a depression fighter. I am Cassandra. But those different "fighters" are also a part of me, and when I'm not sick anymore, like not really sick, it's like those fighters go away, they step back into the shadows. They've been the visible forefront for so long, because this daily fight is so visceral, so intense, that the other aspects of myself can only come out solo in spurts and glimpses, or share the limelight with the fighters at best. When the fighters recede into the shadows... the stage feels very, very empty.

At least, that's how I perceive it to be. I do have visions of freedom, glorious freedom, you know-- to just do whatever the heck I want for a change?! But maybe it's like Stockholm Syndrome... you get used to your imprisonment, and you even get kind of fond of it. Humans love familiarity, even if it is a terrible familiarity. You get comfortable, and change is frightening. Even good change.

Also, when I am not sick anymore, I am then way more responsible for... everything. Cue my intense fear of failure and my unrealistic expectations. As of now, I can assuage my guilt with, "I'm too sick to accomplish _______, so it's okay." Sure, but what about when I'm not sick? Then it's just my own damn fault.

And maybe part of it is my fear of living in abundance. I come from a place of "I'm doing pretty good considering _______." I've never approached life from a place of, "I'm doing pretty good." There has always been a qualifier. Sickness is my qualifier as of right now. When that is gone, then I must face my life as it is, and the prospect of that is... scary.

That's what it boils down to. I'm scared, scared to lose my familiar cocoon of pain and symptoms and walking sticks... scared to step into the sunlight because that's not what I'm used to. Scared that "better" will let me down. Scared to be disappointed, or worse-- to disappoint.

But as I was thinking about it the other night, I realized that I'll never be 100% "better", not really. At least, not in this current place and time. They don't have cures for what I have. It's all management, really. I am beginning to view it as I view my food allergies-- if I ignore my limits and eat whatever I want, I damage myself and I hurt. I pay a price. Sometimes I pay a price for something that I don't even know the cause of! I can be as good as can be, and sometimes I still just hurt or get sick, and that's a fact of my life. (Momma C always knew when I was stressed even before I did, because I'd start having gut problems and get sick. She's the one that made that connection, not me.) I have chronic illnesses. Chronic means that they're going to be around a long time. I can choose to be good about it and manage them as well as I can, or I can be an inconsiderate dick to my body and pay the price. Even if I am as good as can be, sometimes things beyond my control will cause flares-- weather, environmental stressors, other illnesses like colds or flus, etc. Like my allergies, I can get to a place of stability, where I'm not constantly miserable... but I will spend the rest of my life being constantly aware. The fighters will be lurking in the shadows, keeping tabs on things and patrolling the perimeters. Sometimes they'll have to come back into the forefront, but the goal is to get to the place where they offer background support to the other aspects of myself that will emerge into the light, one by one.

Sure, I'm scared of what it will mean when I'm "not sick anymore", but I think it's worth at least trying. I was scared of the changes I needed to go through emotionally to heal from my past, but I would never trade this health for that dysfunction! Facing the fear and walking through it were valuable experiences... and this is just another aspect of that.

Besides, if I hate it, I know what I have to do to get sick again, right? ;)

(Please know that I'm being facetious! I refuse to play the system for my own gain. Stuff like that ruins the legitimate claims for help that people with chronic illnesses need.)

Also, Dave Walker over at From the Fog did a great post on this very topic the other day, which encouraged and inspired me to actually get this out of my brain and onto "paper". Thanks, Dave, for that kick. I needed to process through this.