I will be honest. I'm having a tough day today.

It isn't just the pain, though that's there. It isn't just the collection of "other" symptoms, though those are there too. (Seriously, where do these fevers come from?!) It isn't just the lag from yesterday's 4-hour-both-way rides to see my geneticist, though that's definitely there. It's just... all of it. All of it and the mental checklist and morass of file folders for undone tasks that's taking over my life and never seems to get any smaller. I have to do ______ for disability process, I have to do ____ and _____ so I can continue to receive basic medical care, and oh yeah, I have to evaluate whether I'm just not trying hard enough and that's why I'm gaining weight that I can't lose and why I'm taking money at exorbitant rates from my dad who totally deserves better and why I've doomed my husband to a life of "in sickness" with no "in health" and why I quit school and work and maybe I'm just not really trying, you know, to make the most of my days at home? Maybe I really am just lazy, and being sick is a convenient excuse to give up altogether? Maybe I'm not really that sick and I'm tricking myself into feeling more ill than I am?

I think anyone with a serious chronic illness will ask these questions of themselves at some point, especially if they've given up anything significant because of it, and especially if they're still young. I'm just having a hard time with staring down the years and wondering if I'm going to continue to decline or not. I'm doing my best not to, I really am. Sometimes, especially when you don't see any improvement, it's hard to keep at it, to take the meds, to swallow the vitamins, to do the physical therapy, to eat healthy, to look on the bright side. I'm just tired. I'm so tired, you know?

Anyway, the trip to Tucson yesterday was to see my geneticist, the one who actually diagnosed me with EDS. She had gone to a conference last month, and I was eager to hear if she had any insights for me that were new, and eager to discuss some research that I'd been doing into various co-morbid diseases and syndromes and possible other diseases that could be aggravating the EDS. (For anyone who is new and doesn't know what EDS or Ehlers-Danlos Syndrome is, the Ehlers-Danlos society has a nice, concise run-down of the various "types" found in the syndrome family. I fall very neatly into the Hypermobile type of EDS.) Unfortunately, there are no miracle cures as of yet, but she did have some interesting observations on preventative care.

The conversation we had was wonderful-- I enjoy a good discussion peppered with medical terms :)-- and I came away with a clearer understanding of what symptoms lie in the domain of the EDS, what symptoms come with comorbid diseases or syndromes, and what symptoms are the completely unusual outliers that I can focus on in a bid to find more answers about what's broken inside of me. I have a few interesting leads, but I don't really want to discuss them yet, not without further research. Something I am going to try out is kenesio tape, which I'm not really familiar with but she says is great for EDS because it supports the joints and provides compression to aid with blood flow. I've heard of it before, but not really looked into it because I'm allergic to adhesives, but I think I can make it work anyway, maybe with something like "vet tape" that doesn't have any glue. The idea is to be more proactive with splints and braces, to avoid injury before it happens instead of treating it afterward, and that's a new approach for me. I guess I hadn't really accepted my diagnosis yet, kind of hoping that it was all a big mistake or something... but if I'm being proactive about it, then that means that I accept that it's a thing, and that makes it real. It's not like I haven't done that before, but the funny thing about "chronic" is that it drags on through years and years and you have to face things more than once. I've read that chronic illness is cyclical, and I believe that the acceptance is cyclical too. Or maybe it's just a process. Either way, it just feels big and scary and I don't wanna! But on the other hand, if it can make me feel even a bit better, it's totally worth it, cause that means that I can apply that energy that was tied up in feeling crappy and making myself power through so much unpleasantness and I can use it for something productive, even if it's just having a friend over for tea.

Well, whatever. All I can do is keep trying, right? Plodding forward, one millimeter at a time, that's me. Maybe this plodding will lead me forward into a better place. I can only hope so.

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.

Oh my baby…

Cassie, you are
Smarter than I was at your age (probably even right now), but without (lacking) the discipline your mother should have taught you and couldn't.

You are
more beautiful than I ever was at your age (the teen years are the worst)… You imagine you are fat and ugly, but as time passes, you will look back and see just how beautiful you really are.

No one knows the real you? You're right. It is easier to lie-- that is my legacy to you, that is what you learned from the life I brought you into. That's all I've known, too-- I go through so many guys because I want so much to be loved, but I come to a point where I'm afraid the real me will rear its ugly head and they will hate the real me. I have hope, though, that this book will help us both.

You are not so much of a screw-up. Yeah, you didn't keep the house perfect. Neither did I, nor any of the kids. Yeah, you're not doing so great in school. But you're not stupid.

It's not your job to take care of me, and I'm sorry I made you feel that way. I'm sorry I haven't been able to care for all of you enough to allow you to just be you. I love you, honey. I am proud of you-- the depressed you, the temper-tantrum-throwing baby you, the lazy you, the exercising you, the you that feels so unlovable and unworthy and untrusting.

I love you for all the good and bad you are, and I hope you come through this being the strong, intuitive person that I know you are.

A fellow blogger shared this song on a recent post, and the lyrics really, really spoke to me. Not to mention the fact that the girl's voice is absolutely lovely, and the style is so chill and embraceable. (Also, she's so… "normal" looking, but still so attractive! That really speaks to me, as well as seeing that she is "large" but still beautiful. That comforts me as I struggle with body image as I get bigger.)

Who wants to get a bunch of balloons to hand out to strangers and make them smile with me? That looks like a really, really amazing thing to do. I'd like to tie affirmations to each balloon. I think that things fall into place just as they need to, and I bet that those affirmations will be just what needed to come into the life of whoever gets them.

Out on the open highway
Out in the open air
See the world move beneath me
Leaving without a care
I know just where I came from
But I don't know where I'll end
Only thing that I'm sure of
I'd do it all again

I found a boy I could love
Maybe I found a few
Even with best intention
They never followed through
If he could take my heart now
He'd put right in her chest
Thinking he'd have a girl
He finally could love best

And I'm gonna be fine, fine, fine
I'm gonna be brilliant

CHORUS:
This year is gonna be better and you're gonna see
This year I'm gonna be stronger and a braver me
This year and I'm gonna make it 'cause I said I would
Do all the things you said I never could

This year x2

I may not be perfection
But I never claimed to be
Maybe if I was thin or beautiful classically
Of all of the things I carry
And all of the things I know
I know that I will be loved
No matter where I go

And I'm gonna be fine, fine, fine
I'm just gonna be different

CHORUS

This year x2

Maybe you're the kind who needs lights falling down
Maybe you're the kind who needs stars racing to the ground
Just to feel the things you wish for are coming true

Sometimes it's hard to get up
Maybe it's hard to speak
You think no one understands you
Feel like nobody sees
When the night's dark around you
With all of the things you've lost
Know that the hope inside you
Sometimes is worth the cost

And we're gonna be fine, fine, fine
'Cause we'll be together

CHORUS x2

This year (I'm gonna make it, gonna make my way back to you) x2

Don't worry, I'm better now.

C came home, and I spilled my guts to him. He sat on the couch with me, my legs across his lap, and rubbed my aching knees while I cried and blathered on about what was going on with me. He listened attentively, gave me wonderful long hugs and cuddles, and then sent me to the tub for a soak to ease some of my pain and help me unwind further. Oh, how can I forget the awesome words of affirmation he gave me as well? I'll get to that, though. It makes more sense in context.

While talking to C, I was able to kind of pinpoint some of the factors that brought me to the sad place I was in last night. First of all, I did some research yesterday morning on alternate names for soy and gluten hidden in foods. It was... discouraging. The list is incredibly long, especially for soy, and I've been unknowingly ingesting soy in some of the foods I had previously thought were safe. I'm not as concerned about the gluten, and the list is shorter for that one, but I am definitely sensitive to soy and want to stay away from it. I guess I was just frustrated by the thought of having to refine my diet even further, and this means that I am going to have to do more cooking. That thought is daunting, because I often am so tired and ill and in pain that cooking is difficult. Now I have to cook, because I can't just get stuff from the store. I mean, can't I catch a break?!

So there was that. And then I went to work, even though I really didn't feel like it. At the end of the work day, we stopped by the store to buy turkeys for the turkey boxes we're giving away to several families. The lifting of the turkeys in and out of the cart, the walking around, and the waiting at the register for 15-ish minutes while the clerk messed things up several times took a toll on me. By the time I got home I was aching fiercely. I had decided earlier that I would not be able to participate in the bar tending fund raiser that's coming up for the HJ which discouraged me some, because I feel like I'm always letting the agency down and it was just another indicator of how much things have changed for me, how much I can't do anymore. The trip to the store validated my decision, but that didn't encourage me any.

On the way home I stopped by the store to pick up my pain killer prescription, which I had to buy without insurance this time for slightly complex reasons. I had expected it to be forty, fifty dollars maybe, as it was several months ago when I had to do the same thing. Because I am taking a different sort of med, though, it came out to over one hundred dollars. All that for less than a month's worth of semi-functioning capability. If that wasn't depressing enough, that also means that my credit card is now maxed out. It's not like I've used it for frivolous things, but having to live off of it for a while last year, various medical expenses, groceries from time to time, and household items when we first bought the house have all added up. I pay on it regularly, but I don't have much in the way of disposable income so it doesn't make much of a dent. The sicker I get, the harder it gets to pay on it... and the more I end up having to use it. It's a vicious cycle.

I've always had difficulties relating with money, but not in the sense that I have a hard time managing it. I'm good with money, when I'm able to make it lol.  No, the difficulties I have are that I don't feel worth it being spent on me. The high price of my pain meds was a blow to me, because C will be the one that gives me the money to pay that off, and I question deeply whether I'm worth it or not. I don't feel that I am. I hate being in debt for any reason, and I'm in the largest non-tuition related debt I've ever been in. I feel like I'm failing at life (for so many reasons) and I'm just dragging C down with me.

I think the money thing, the high price and the maxed out credit card, was the deeply insecure straw that broke the neurotic camel's back. The blow to my already wavering self-worth and self-confidence was fierce, and then I came home to a messy house that I hadn't had the energy or  good enough health to clean in several days. I was hurting, discouraged, and found myself thinking, "What's the point? Why should I even keep trying? I can't seem to make this work. I'm failing at life, and I'm taking C down with me. Am I worth this effort?"

Well, C's love, listening, and words of affirmation really did a lot to boost my spirits. When I was exploring my feelings about money and self-worth, he told me, "You are worth more than money." He also laid out his financial plan for the next few months, which put my heart at rest some. We're going to be okay. I am not breaking him financially. We're going to get through this. It's going to be okay.

Most importantly of all, the look of pure, overwhelming love in his eyes as he stroked my face, held me close, and kissed me deeply buoyed me up like nothing else could have. Even after I had just spent the better part of half an hour rambling and crying and being sad all over him, he still had nothing but love and support for me. I knew I knew what I was doing when I married the guy. Sometimes all it takes is just for someone to listen, affirm, support, and accept to really turn things around. I went to bed happy and fell asleep quite quickly, which was a relief.

Tomorrow is his day off, and I'm looking forward to spending the day together. (Well, if I ever get back to bed. I spent most of yesterday and last night sleeping, but I woke up a few hours ago from pain so I've just been watching movies while waiting for it to die down enough to sleep again.)

So how was the trip to the beach? It was great! I'm quite glad that I went.

The trip up was uneventful, without even a stop by the Border Patrol checkpoints. I guess three white people in a beat up truck don't arouse much suspicion. In any event, we made our reserved motel in good time, having to give them 1/2 an hour to get it ready before we could actually occupy it.

I was the one put in charge of finding the motel because I had that terrible experience with the aptly nicknamed "Roach Hotel" during the trip C and I took to the Ren Fair just before the wedding. Their reasoning was that, having had such a bad experience, I would be more likely to do research and make sure that I wouldn't have that kind of an experience again. Well, they were right! We stayed at a Quality Inn just off of one of the major interstates, and even the outside looked presentable. When we got up to the room, we were astounded at the level of luxury that less than a hundred dollars had gotten us. The beds were so comfortable, and so were the pillows! We ended up lazing around on the beds for a couple of hours after bringing up our things, but we finally roused ourselves enough to put on bathing suits and gather our beach supplies.

Although we started late, and many shops were closed (it took FOREVER to find parking!), we walked up and down one of the streets by the beach that is brimming with quaint little shops and tourist traps. M had allotted each of us a "budget" for souvenirs, and he proceeded to spend money on all of us, himself included. As I said, I'm shallow and I love free stuff, soooo... I was all over that. (Lest you think I'm a gold-digger, I assure you that the good ol' guilt factor was still well in place, and I was hesitant to accept his gifts, but it was clear that he wanted to, so... I let him.) One thing that was purchased for me was a dress that I tried on in a whim in one of the cute clothing stores. We were ooh-ing and ahh-ing over some fancy party dresses, and there was a particularly stunning lacy number with a keyhole back that I just had to try on, just to see what it looked like. As I was pulling it from the rack, M wandered over with a strappy black maxi dress and I took that in with me, too. I tried on the black one first and walked out to stares and intakes of breath. Though it was expensive, I thought about it that night and went back for it the next day, changing into it then and there and wearing it the entire rest of the day and the trip home. It's very comfortable! Though it is a maxi dress with lots of material, the top is quite strappy and a bit daring, showing some cleavage and having no back to speak of. Needless to say, C likes it. On our way home from dropping M off, he asked me, "So... is this going to be your new 'sexy black dress'?" I just laughed. (Wearing something "sexy" like that in public is a big step for me... I'm not used to owning my attractiveness like that. It used to terrify me, and it's still scary, but it's something that I want to do for myself. This was a good step in that direction.)

After shopping for several hours and stopping to eat, we wandered down to the beach. I separated from the others after a few minutes, because I knew that I was there to grieve D. That was the big reason that I went on the trip to the beach, and I'm glad that I did, because it was cathartic and peaceful at the same time. I had my time, I reflected, I cried, and I accepted just a little bit more. Then I went back up to my towel and did some deep breathing while watching the waves. I can still see the dusky sky and the rolling, crashing water when I close my eyes. I hope I carry those moments with me for a long time.

We had thought about dressing up fancy and going out to some sushi place or something, but by the time we piled into the truck for the ride back to the motel I was too exhausted. I didn't want to be a damper on anyone else's plans, but it turned out that the others were tired too, and content to just hang out in the room, which we did. I fell asleep really quickly, which was a blessing. I was worried that I'd have more of those sleep problems I've been having lately. I did wake up at 5, wide awake, but managed to fall asleep again around six until M's alarm went off at 8:30.

After breakfast and getting our things all together, we checked out and hit up the shops again to visit an antique store we saw the day before that had been closed. We really wanted to go in, and I think we were all glad that we did, as all of us walked away with some treasure. The prices were really good! I bought a silver and opal necklace that reminds me of the ocean. I wasn't going to get anything, but we ended up going back because M forgot his hat in the store, and when we walked back in I knew that it was my last chance and I took it.

We walked the pier and had lunch in a little restaurant at the end, above the water. It was neat to look out the wind and see the waves rolling by beneath you. I hadn't realized we would be in the sun that much, and I didn't even think about it being midday sun, so I didn't wear sunscreen the second day and got a little crisped on the shoulders. After eating lunch, we walked back to the truck and headed home, making record time. Unfortunately, M's truck broke (brakes failed) just as she pulled off of a major street toward my house, but it was close enough that she was able to use the emergency brake to get us to my house. The two M's ended up hanging out for a few more hours than they thought they would, but it was all good. Even when I'm tired and have a headache and am annoyed with the world, those two fall into the least annoying category, much as C does.

Again, I'm glad I went, and I'm looking forward to the next beach trip. Fibro didn't even play much of a part on the trip, as I was afraid it would. I almost felt like a normal person walking the beach! You know, except for the walker and frequent need to eat/take meds...

Woohoo! Today my stunningly handsome husband is taking me out on a date! Why? Well, because I need it, and also because I got a new super-cute and sexy dress, so I need an excuse to wear it, of course. :) (Can I just insert a shameless plug for my local Goodwill here?)

See? Bad picture, cute dress. Sexy in a "50's pin-up" kind of way. Funny thing-- I would have NEVER considered wearing something like this, even a year ago. I was much more, shall we say, modest? And now I feel perfectly modest in this dress, although I know others would disagree. But all my lady-bits are covered, it's not some sort of diaphanous material (quite sturdily made, actually!), and most importantly? My husband likes it.

So, on a date we go! I'm going to get my hair did and put on the face paint and everything. All out. (Well, as "all out" as I go, anyway. He likes his lady looking natural, which is a win for me!)

I'm glad to have something to look forward to. I did not sleep well at all last night, and today's a pretty high pain day for me. (Hello, milestones-- my "high pain days" now are what my high-average days were like just a month or two ago!) I know I'll feel better after a shower, and I've got acupuncture + massage this afternoon. It'll be good. I'm just going to take it easy today.

Also? I still trip out sometimes about how awesome it is to actually be able to casually drop the word "husband" into conversation. I freaking love it.

Also also? I made banana-bread muffins last night while tutoring my friend C, and they're all gone this morning. All gone. I gave friend C several to take with her, because she LOVED them, hubby C ate two, and I had a couple for supper. (The recipe didn't quite make a dozen, sadly.) What's amazing is that C liked them, because I'm honestly not the best baker in the world when it comes to allergy-friendly baking (it's really hard, y'all!), and I don't think I've baked a thing yet that he's liked... until now. I did leave them in a bit long, because I wasn't sure what the inner consistency was supposed to be like, but now I have a good recipe to play with and a baseline from which to experiment. I'm very happy about that.

In addition to that, I made a necklace for my yoga teacher/massage therapist, because she's moving away and I've come to really respect her as a mentor and guide, but also to appreciate her as a friend. She was really enthusiastic about and interested in my proposed online store business plan, so I thought it'd be fitting for her to be the first to receive something that I've crafted in that vein. I etched the Ohm symbol into the front of a purple shell pendant, and etched "Namaste" into the side. It's also fitting that it's purple, because we had a discussion yesterday about today being Lupus Awareness Day, and Sunday being Fibromyalgia Awareness day, both of which are represented by the color purple.

She'll be speaking to one of our support groups next week, so I'll give it to her then. I'll be sad that she's moving, but thank goodness for Facebook, eh?

Update: Date was fun. A couple of pictures for proof. 

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.

I've been feeling better since Wednesday. Stronger. More able to handle the pain, and even to push myself and feel my muscles burn with exertion. It's been a while since I dared to do anything like that. It would have sent me straight to bed in spasms of muscle agony and the groaning torment of severe "fibro flu". Who wants that? Not I.

I did a lot (to me) of packing and moving this weekend. I picked up boxes and carried them out to my car and into the new house. I scrubbed shelves and mopped floors. I wiped down bathtubs and swept the whole house. I hung shower curtains and ate sushi cross-legged on the bare tile floor.

It was a good weekend. I enjoyed feeling stronger than I have in... who can remember how long? When your days are filled with pain and sickness, they tend to blur together. You forget the last time you had a good day, unless it was extraordinarily memorable. I remember my wedding day, but that was not a good day, health wise. It was actually a very bad day, but I enjoyed it nonetheless.

So that makes me think that the acupuncture is actually, finally helping. I feel like I've been gradually slipping down a flight of stairs, and each step is a lower level of functioning than the last. But, at last, I feel like I've taken a step back up that flight of stairs.

Granted, the fatigue was a bit of a bitch today, but I fought it. I did good, but today, combined with the weekend, may have been a bit much. I think I got over-excited about feeling better, 'cause now I'm feeling pretty gross. Not much in the way of pain today, actually. Surprisingly. I don't really know what to do with myself when I'm not actively in the throes of affliction, so I was at a bit of a loss...

While I was waiting in the bank to change my name last week, I picked up a National Parks magazine and read an interesting article about a woman and her husband who started as seasonal Park workers in Glacier. The article was about how they worked Denali for a season or two as seasonal employees, but then they chose to stay there year-round, and how that experience has changed them for the better. It was a good, interesting story. I'd like to see if I can find it online somewhere... Oh! Found it!

Here. Read this. It's great.

Anyway, it really struck a chord with me, as ever since I started really talking to D I've had this intense desire to visit Alaska... maybe even stay for a while. I can't now, 'cause of the dumb fibro (cold affects me very, very negatively in that regard)... and that is what got me thinking, and grieving.

I'm grieving for the Life That Could Have Been.

If I were not sick, what kind of life would I have led?

Realistically, my health has been compromised almost my whole life. I've had fibromyalgia since I was 9, at least, and the fatigue and other things that accompany it really impacted me growing up. I never had much physical stamina, not to mention the exercise induced asthma that I inherited from my biological dad. (Thanks, T!) Maybe I had the thyroid and adrenal issues way back then, too. I don't know. All I know is that the older I've gotten, the sicker I've gotten.

But if I were healthy, what kind of life would I have chosen?

I used to love to roam the desert and go hiking as a kid. On Sabbath afternoons I'd be over at the D's house, and after lunch we'd decide to go for a hike in the desert. I'd borrow some of their son's clothes and shoes, and we'd be off on an adventure. J and I would leave the adults behind and skip up the mountains like little goats-- he was always ahead of me, because of the stamina/asthma thing, but I trucked right along. When I lived in ID, I had a fierce longing to work for the Forest Service, and I was SO jealous when K got the opportunity.

If I had not been sick, that is the kind of life I would have chosen for myself. I would have joined up with the Forest Service, or the National Parks, clearing trails or patrolling the backwoods or whatever was necessary. I'd cross-country ski through the woods in winter, and I'd hike the Grand Canyon from rim to rim. I'd camp out at Denali, and I'd hike McKinley at least once. I'd sleep under the stars at the Arches, and I'd walk the Appalachian Trail, a pack on my back and a dog at my side.

Would I have a husband by my side as well? I don't know. I do know that, were I living the life that my soul dreams of, I would have married someone very different from C, someone more like B or D, or even W, my sister's fiance.

But the thing is... I was born into this broken body, a body that limits me in so many ways... and I will never get to live that life. I had a taste of it, a beautiful, refreshing taste when I lived up north. But now... now I celebrate walking around the block. My body does not do the things that I desperately, sincerely wish that it would and could. And I must accept the fact that it may never do those things. Truly, it will never do all the things that I wish it could, and that's okay. I know that I am more "frail" than some of the rugged individuals out there (I'm looking at you, Miss R, and your man J!), but I still want to work up to doing what I can.

I want to go backpacking again. I want to go camping again.

I want to do those things without fear of falling wretchedly, desperately ill as a consequence of enjoying myself, of pushing myself. It's ironic that physical exertion can make me so, so sick... because getting exercise is supposed to be so super healthy for you! I feel like a leper sometimes. A misunderstood leper.

And so I grieve. I grieve the Life That Could Have Been, the life that would have been, had I been born into a healthy body.

Anyone reading this with a body that follows your commands and obeys your wishes without committing mutiny... I hope that you walk away from this grateful. I mean it. How often do we think about the little things that our body does for us, without even thinking? Washing the dishes. Bending down to pick toys up off of the floor. Rising from a seated position. Chewing food.

These are things that, some days, are difficult or nigh impossible for me to do. Some of my chronic illness friends find these things absolutely impossible on a regular basis. I'm better off than a lot of them, and it's humbling.

If you have health, don't take it for granted. I certainly don't, not anymore. And yes, while I am grieving, I am also celebrating. I am celebrating the health that I have, whether I feel awful or not. I have safe food to eat, I have medicines to take, I have health treatments that are paid for and not putting me in the poor house or driving me to extreme measures to pay for. I have a supportive network of friends and family that both believe me and believe in me. I have a wonderful husband who takes care of me in a zillion little ways, and who wanted to marry me despite the trip down the stairs I've been taking. He has wanted to marry me for years and years... and his love did not dim a whit while I was off doing what I thought was best for both of us. How many people can say that?

Sure, it's rocky. Sure, I'm in pain. Sure, I'm fighting hard against a body that is literally trying to attack and kill itself. But man... I have so much to celebrate, so much to be incredibly grateful for. And it's those tough things that make me appreciate the nice things so. much. For example... I have a new house! And I was able to clean it!! All by myself!!!

I love my life. So while I do grieve the Life That Could Have Been, I don't know if I could or would ever give up the Life That Is. It's just too rich and too wonderful, and I love all the pieces of it... even the hard ones.

I came to a decision this morning.

Sure, it's fast, but I'm a pretty fast decision maker as a generality. I like things to happen now!

Anyway, I may go into this more later (I'm hurtin' right now, and not really in zee blogging mood), but I have decided that I will, in fact, postpone the massage therapy program for a year.

I'm postponing, not quitting. And it's a mature, thought-out decision, not a failure.

I just don't want to make a bunch of progress towards getting my health straightened back out and then go into a big ol' relapse because I pushed it too hard, too soon. I'm trying to look more at the long-term, and I think that this is the best decision I can make for myself right now.

I talked to C this morning about my thoughts last night, and the possible options, and all that stuff. He's behind me no matter what I choose, but the big epiphany for me was realizing that even if I'm "just" a housewife, he's fine with that. I have the freedom to choose what's best for me, and he's okay with whatever I decide. That is very freeing. To know that he will neither think less of me nor resent me for not "pitching in"... that allows me to make a decision based on what is really the best, rather than a decision motivated by the fear of rejection or other emotions.

Also... this means I can go to J's wedding! I would be lying if I didn't say that this was a slight motivating factor in my plans... But now we can combine the "let's go get my cat and the rest of my stuff" trip with J's wedding, so that's perfect. I'm starting to save up already.

I have other things I can focus on to keep me occupied while I really work on getting myself to a healthy place. It reminds me of what I went through in Id with the S's... I kinda dinked around and kept myself occupied with work of various sorts while I put a lot of focused energy into healing emotionally and mentally from the past abuse. Now that I've advanced much further emotionally, it's time to focus on advancing physically.

Honestly, I do feel relieved having come to an actual decision. This question of "but can you do the massage program?" has been brought up to me many times through the past few months by many different people. I brushed them off as party poopers, determined to charge headfirst into the challenge and prove myself a Mighty Fibromyalgia Warrior. However... I'm thinking at this point that maybe discretion is the better part of valor. I'm still a Warrior... but taking a different tack.

The best part? I feel good about this decision. I believe I'm doing the right thing, and I feel peaceful and settled. I can see that my reasons are good ones, and that I am doing this for good reasons, so I am not afraid. (Much.) Also? It's my life, and it doesn't matter if anyone else agrees or disagrees, frankly. As long as I (and C, since he has a stake in this now) am okay with it and believe I'm on the right path, well... that's what really matters.

As the famous philosophical quote goes, "Know thyself," and... I definitely know myself.

I can't sit still. Even when I'm feeling crappy. So I vacuumed the house, and I put away my laundry, and I'm (finally) going to take that shower and then head off to play with the dogs I'm babysitting. I'll do a couple of loads of towels, now that S has unearthed all the towels from his room while moving.

I ordered this book a month or so ago, and I just picked it up to read while I was making lunch. It's called "The Ultimate Guide to Sex and Disability". I did the sneak preview thing that Amazon offers, and what intrigued me was the discussion of self-esteem and disability early on in the book. (Anyone that I'm really comfortable with will know that I need no help in the sex department!) Anyway, I found this little gem that I'm going to be mulling over for a while... especially since I've been seriously considering applying for disability, or at least a handicap parking placard.

The epiphany I had while reading this was that, though I may have to identify as disabled at this point in my life, that doesn't mean that I'll always be disabled. (And I know there are people, like my friend BJ, who would vehemently protest my identifying as "disabled" in the first place, but... I know what I know. I qualify for the label, at least right now, so why bother denying reality if accepting it will help me?) I think that was the major fear that's been holding me back... if I accept this, then it will always be a part of who I am. But that's not true. I may always have chronic illnesses, but I won't necessarily always be disabled.

A good distinction to realize.

Anyway, here's the section that jumped out at me today.

"Coming out to ourselves as disabled can be an important step. The term 'coming out' is usually reserved for people who are disclosing their sexual orientation or gender identity. For example, one might 'come out' to family, friends, or coworkers as gay, lesbian, bisexual, transsexual/transgendered, or intersexed.

The coming-out process is ordinarily something that happens after much reflection, soul searching, and personal exploration. It isn't the end of a journey but rather a point where you are finally accepting a particular identity for yourself and taking the risk of sharing that identity with the important people in your world. You are boldly stating, 'This is who I am, here and now, and it's not worth it for me to pretend or 'pass' anymore.'

The ways that mainstream heterosexual society forces people to pass (that is, pretend to be heterosexual in public) are similar to the ways in which nondisabled society marginalizes the rest of us. Mainstream, nondisabled society has very specific rules for living with a disability.

'After my accident my friends rallied around and visited me in the hospital, sent flowers, all that stuff. After a while, though, I think they just wanted me to get on with things; it was like the disability was yesterday's news. I had done the disabled thing, now I could just stop being boring and drop it. It wasn't like I talked about it all the time, or ignored their needs, but they just wanted it to be a total nonissue, which it could not be, mainly because of access issues and stuff.'

Coming out to others about your disability is, in part, about holding onto your right to take care of your own body and maintain a close connection to it. Knowing when you get tired, realizing your limits, sensing when you're aroused by even the slightest physical cue--all are things that come with practice and are gifts that many others don't have. It's often assumed that disability creates a split between a person and their body because of the things they 'lost.' While this may happen to some, for many of us it's more true that learning to live with our disabilities brings us closer to our bodies." (The Ultimate Guide To Sex and Disability, pg. 22)