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08 February 2005 @ 03:35 pm
oh, how the mighty have fallen.  
Remember when I organized those King House parties for 200 people? Now I'm rendered totally shaky and nervous and panicky about throwing a knitting circle this evening. I miss you guys -- Rina and Sheryl and Genna and Justin and Betsy and Kirsten. A LOT. *craves real soc soc with people I don't have to Be On for, for my beloved siblings who know my weaknesses and love me anyway*

I've been trying for two weeks to post an entry about how hard and crazy and emotionally messy everything seems right now, stuff about my health, how I somehow want support but don't know in what form or from whom, but it just takes too much effort to write these things out (especially with the fear of people going "wait, THAT's your problem? Shut the hell up."). It's easier to just type lots of exclamation points, smile at people who smile at me, and not get into a conversation I don't know if I'll have the energy to finish, or if I'll hate myself at the end of it.

It's just a difficult few weeks. I'm actually doing better than I was, in some ways, it just feels like I've relapsed because I'm trying to do more with the same amount of energy. I'm tired and drained and frustrated (and so emotionally on edge), and because I'm fighting MORE with keeping my weight up after having the flu, I'm eating more often and so feel sick almost all of the time.

I'm going to go back to the doctor and nutritionist if I can to hopefully have them help me sort out some of the medical treatment stuff I've been reading, because it's not good when I read books and think "If I do that diet, I WILL DIE." Because those of you who know me know me, it's not like I've got a closed mind when it comes to alternative medicine and less than conventional diets and am just freaking out because someone wants to take my cheez-its away. I've already cut out sugar, dairy, all processed foods, alcohol, coffee, yeast, and flour, much of that for over a year, and I haven't died. But to take away FRUIT -- which is the ONLY thing I can reliably eat without making me feel sick and my fallback on bad days -- *and* to cut out most carbs... It is ALL I CAN DO not to stay only 10 pounds underweight NOW, and that just seems like bad bad news. But I don't know, and so I will ask the professionals and hope they don't laugh at me for not being able to figure it all out myself.

Basically I just feel like every minute of every day I'm disappointing everyone, mostly myself -- that in trying to do a little bit more I realize all the things that I can't do. And they're not kidding when they call these immune disorders "invisible illnesses", because it is often invisible even to me. It surprises me all the time how much I suck -- I really think that if I hit on the right thing, if I go to sleep on time or take more vitamins or meditate, if I am just a better person I will be able to SNAP OUT OF IT. It's not like my legs are broken. I should be able to do all these things and more without feeling like I'm about to break in half under the weight. (God, just the progress here is so slow and I am so tired of being dependent and feeling like I don't recognize this body and brain I'm in now; I MISS MYSELF.)

The joy sadhana has gone completely out the window here. I need to get it back, especially the accomplishments thing, because panic attacks and self-imposed guilt trips are the exact OPPOSITE of helpful. Go back to the mantra I had before, and really really try to believe it -- something is better than nothing. something is better than nothing. every little thing is better than nothing.

At besyd's encouragement I checked some support-group stuff out on the web... I don't feel like I have the energy to add *another* thing into my day, but I read this amazing metaphor thing -- a way to explain how it feels to live with this sort of thing to someone who doesn't have it. I've been going around saying "It feels like you're just getting sick ALL THE TIME", but that's not quite true. This was written about Lupus, but it smacked so totally true that I just stared. It's NOT JUST ME. I'm not making this up. It's not like I'm just Afraid Of The World. Anyway, it's short and, like I said, blew my MIND, so I post the link here: The Spoon Theory.

So, I'm trying to clear my plate of most of my obligations. I doubt anyone will notice a difference, because I cling to the escapism of the interweb, but I just wanted to state that I'm regrouping a bit and you shouldn't count on me for things. So yes, selfishness. :) *hoards attention and energy for self* (So... to clarify -- I'm not disappearing from the internet or anything, I'm just removing the obligation of keeping up with my friendslist and email and being available for chat and stuff, and letting you know that. I know, sounds a bit beaurocratic and nitpicky, but it's all in the details.)

That said, I also really really want to thank everyone on my flist for being so awesome and supportive, for writing me cute squeeeful ficlets and having commentspam and sending love (and ICONS! *clings to liminalliz*)and giving me a SOCIAL CIRCLE and making me feel worthy in ficwriting regards and being awesome. :)

---

And, to start the gleee rolling after that:

things done:

1. left house! with outsideness! and DRIVING!
2. walked from far parking lot to Kripalu.
3. Tae Kwon Do practice with the old black belt club. (exercise! and *memory* for those old forms! and social hour!)
4. yoga this morning
5. ate breakfast and a *good* lunch though felt sick
6. took vitamins and herbs
7. wrote this LJ entry

---

In more flippant news, people are, like, building bomb shelters as though pestilence and war and such will actually RAIN FROM THE SKIES when Stargate airs tonight in the UK. This entertains and frightens me in equal measure.

That said, spoil me for things and there will be wrath. WRATH.

Well, unless pestilence actually *does* rain from the sky, in which case, I'd like to be informed.
 
 
feel: distresseddistressed
hear: "Leave an Open Door" - Roger Clyne & The Peacemakers
 
 
 
Rose Wilde-Irishrosewildeirish on February 8th, 2005 08:46 pm (UTC)
*sends hugs*

Yah, I spent my ?Senior? year of college suffering from what was probably either chronic fatigue or malnutrition-induced fugue state. And some days I felt I could barely walk across the dorm room, let alone campus.

Do what you need to do. You will be missed, but if it gets you in a better space, so much the better. And things will get better.

Stupid question, but they did check thyroid and other hormonal levels with you, didn't they?
Little Red: sga - lizzie just breathe - goldie_galmylittleredgirl on February 8th, 2005 08:55 pm (UTC)
*nodnodnod* ARGH. Sorry you had to go through this too :( So not fun! And eeep.

I'm really not going anywhere :). It's probably very silly, I just needed to give myself the permission to back away or wank out on internet stuff to remove the stress (and so, if it comes up, people have already been warned and I don't have the stress of having to warn them then)! And yes, things will get better. They're getting better all the time, it's just been THREE YEARS of mucking around with this, and is kinda frustrating. The thing is, when I'm REALLY really sick, I just don't have the energy to care or think about stuff I'm missing out on. It's once I start to get a bit better that the frustration really hits. *shrugs* Weird, I know.

Stupid question, but they did check thyroid and other hormonal levels with you, didn't they?

I think so. I was pretty out of it at the time, but I got ridiculous amounts of blood drawn and what I can imagine will be described as "every test imaginable" for a few months there. I might make a note to ask my doctor, though, just in case. Or see if I still have records of what tests were done...
(no subject) - rosewildeirish on February 8th, 2005 09:27 pm (UTC) (Expand)
(no subject) - mylittleredgirl on February 9th, 2005 02:29 pm (UTC) (Expand)
Karen T: nanda's rockpoohmusings on February 8th, 2005 08:47 pm (UTC)
Heh. Bomb shelters. This amuses me. Heh. :)
Julie, betrayer of the literary tradition: fo shizzle - naushikasplash_the_cat on February 8th, 2005 08:48 pm (UTC)
That radioactive cat fallout is going to be dangerous!
(no subject) - mylittleredgirl on February 8th, 2005 08:51 pm (UTC) (Expand)
(no subject) - poohmusings on February 8th, 2005 09:00 pm (UTC) (Expand)
(no subject) - mylittleredgirl on February 8th, 2005 09:05 pm (UTC) (Expand)
Julie, betrayer of the literary tradition: sam smirksplash_the_cat on February 8th, 2005 08:47 pm (UTC)
*hugs you tight*
Little Red: trek - naomi wildman - jen717mylittleredgirl on February 8th, 2005 08:51 pm (UTC)
*hugs back* Thank you... :)
Samin_parentheses on February 8th, 2005 08:52 pm (UTC)
Thank you for the Spoons link. I have far too many friends (well, 2, but that's too damn many) with "invisible illnesses," and I think that essay helped me understand a little better. I give you so much credit for doing everything that you're doing, despite being sick. I can't wait to see you in...a month and 3 days! Woo!
Little Red: xf - msr original 'ship - liminallizmylittleredgirl on February 8th, 2005 08:58 pm (UTC)
Eeee! YAY!!

And it was really really cool for me to see it written out like that. Because I totally do have to mentally budget energy and psychologically prepare myself to take a shower, and it's just really a relief to hear that's actually a symptom of this (rather than... you know... me being INSANE). It gave me good words to explain to my parents why I'm so easily overwhelmed by other stuff, because doing *anything* takes effort, and so my threshold for new things is pretty low. So, yes, 'tis a very good thing. I'll have to check out the rest of that website soon, too.

*loves you lots*
Malinnemalinne on February 8th, 2005 08:54 pm (UTC)
It's time to pull back and take care of yourself first. But keep a couple of outside activities that you truly enjoy--and it looks like you are doing that.

Be patient! Easy for me to say, but it takes time. A friend of mine contracted EB and was faced with chronic fatigue several years ago. He his now healthy and pretty energetic. Best of all, his smiling warm disposition has returned.

*hugs*
Little Red: sga - lizzie just breathe - goldie_galmylittleredgirl on February 8th, 2005 09:04 pm (UTC)
Yeah... I'm thinking it might be better (and let me improve more quickly) to clear the slate and add stuff back on one at a time, rather than be stretched thin at this point. I'm an insanely social person who has been cooped up in my room for far too long, so it's exciting (if skeery) to put my energy into seeing more people. :)

I'm so glad to hear that your friend is healthy now!! A lot of the literature has doomful predictions about never. getting. better., so I love stories that counteract that. :)
(no subject) - malinne on February 8th, 2005 09:11 pm (UTC) (Expand)
(no subject) - mylittleredgirl on February 9th, 2005 02:34 pm (UTC) (Expand)
Ari (creature of dust, child of God): lovingwisdomeagle on February 8th, 2005 09:00 pm (UTC)
hugggggggggggggggg!

Love you, Little Red!
Little Red: trek - naomi wildman - jen717mylittleredgirl on February 8th, 2005 09:09 pm (UTC)
Love you TOOOOOO!!! *clings* And one of these days, when I am less afeared of obligations, I will still owe you McKay/Weir fic for your awesomeness. THAT is how much I love you. :)
(Deleted comment)
Little Red: sga - cute when sick - duckadorkmylittleredgirl on February 8th, 2005 09:14 pm (UTC)
Nooooo! Don't stop whining!! *clings* I'm so sorry you're sick, and canker sores are OF THE EVIL. I really really didn't mean to be all "MY PROBLEMS ARE WORSE THAN YOURS", because there's truly nothing I hate to hear more than that!

However, allow me to respectfully submit that you try to sleep and eat well so you don't end up with the evil spoon-inducing mono of doom! :)

And... I don't want to drop out of fandom, because it's my one basket of many many eggs (entertainment, self-esteem, social life, ETC -- and yes, that depresses me A LOT, but so it is right now!). Just wanted to give myself the option to settle down the panicky part of my brain. :)

And wheeee! Remember to bring a can opener into your bunker along with all the canned goods... :)
(Deleted comment)
(no subject) - mylittleredgirl on February 9th, 2005 02:35 pm (UTC) (Expand)
Allie O'Nalliesings on February 8th, 2005 09:02 pm (UTC)
That said, spoil me for things and there will be wrath. WRATH.

*smacks self* I thought that said "wraith" and I was wondering what kind of connection you had to the pegasus galaxy.

On the plane to California, I sat next to this cool woman who totally reminded me of you. For 6 hours, I was tempted to ask her if she'd ever lived in a commune ;)
Little Red: sg - cult - me!mylittleredgirl on February 8th, 2005 09:15 pm (UTC)
Ooh, that's even better. I WILL SIC WRAITH UPON YOU!! Hee. (I actually typed Wraith to begin with, too, so it'll probably be a common misreading among the geek circles).

For 6 hours, I was tempted to ask her if she'd ever lived in a commune ;)

Yeah... there's just no good way to bring that up with a stranger! I'm curious what made you think that she had...?
(no subject) - w0lfstar on February 9th, 2005 06:28 am (UTC) (Expand)
(no subject) - mylittleredgirl on February 9th, 2005 02:36 pm (UTC) (Expand)
(no subject) - w0lfstar on February 9th, 2005 06:48 pm (UTC) (Expand)
MegTDJ: Janet Penlight - goddessvampyremeg_tdj on February 8th, 2005 09:05 pm (UTC)
I don't need to read the thingy, cause I know how it feels. (((((huggles))))) You'll get there! Honest!

I'm a leetle concerned that you still feel sick when you eat, though. Maybe you should check into digestive problems like candida or something. My digestive tract was thrown completely off when I had stomach flu as a kid, and I had to live with that for years before we figured out the prob and fixed it. My niece had the same thing happen a year or so ago, and we picked up on it right away. She was fine in a couple of weeks. You should NOT feel sick when you eat, girl!! You really should check into it. (((hugs)))
Little Red: sga - cute when sick - duckadorkmylittleredgirl on February 8th, 2005 09:19 pm (UTC)
The book with the diet that was freaking me out was about candida. My doctor at one point thought I had it, but I thought that was kind of ridiculous since I had already cut out most candida-causing foods from my diet... that's why I want to see the doctor and nutritionist again. I took anti-candida meds for a little while and it made no difference in my overall health, but I think I may have just been so sick at that point that I wouldn't have noticed (and my doctor thought that was *all* I had and that I'd miraculously be totally cured, while I'm pretty sure it's just a symptom of a larger thing). Mmmmm, more drugs. *makes face*

About the spoon theory thing... it will probably be more useful to you than to anyone else. Something to think about for when you get *even* better and start meeting lots of new people and having friends that you may need to explain this to...
(no subject) - meg_tdj on February 8th, 2005 09:58 pm (UTC) (Expand)
(no subject) - mylittleredgirl on February 9th, 2005 02:40 pm (UTC) (Expand)
(no subject) - meg_tdj on February 9th, 2005 06:10 pm (UTC) (Expand)
(no subject) - mylittleredgirl on February 9th, 2005 06:16 pm (UTC) (Expand)
(no subject) - meg_tdj on February 8th, 2005 10:11 pm (UTC) (Expand)
(no subject) - mylittleredgirl on February 9th, 2005 02:43 pm (UTC) (Expand)
(no subject) - meg_tdj on February 9th, 2005 06:12 pm (UTC) (Expand)
(Deleted comment)
Little Redmylittleredgirl on February 8th, 2005 09:20 pm (UTC)
I really have NO idea why it's going to make the internet explode, because I have been so very spoiler-free. I just know that things really *will* explode. Heee.
(no subject) - nenya_kanadka on February 8th, 2005 09:25 pm (UTC) (Expand)
Nenya Kanadka: Captain Protonnenya_kanadka on February 8th, 2005 09:17 pm (UTC)
Driving *and* tae kwan do? Wow. You are amazing today, hon.

Glad you found that essay. :) I think I remember hearing about "spoons" before, in the context of another friend of mine with a nasty psychological illness, who also had to ration out what she could handle in a given day. It does help explain it for the rest of us. And finding out that somebody else "gets" you, and OMG you're not alone!11!! in [insert crap here]? *Is* about the best thing ever. (Besides not having the crap happen in the first place.)

*hugs you* I sent you a snail-mail card a week or two ago--did it get there? *evil Canada Post*
Little Red: gleee! - nenyamylittleredgirl on February 8th, 2005 09:21 pm (UTC)
YES!! OMG!! I got it yesterday and squeeed ridiculously! :) :) :) Sorry I didn't get around to telling you yet :)

There will be a postcard coming to you sooon...
(no subject) - nenya_kanadka on February 8th, 2005 09:31 pm (UTC) (Expand)
(no subject) - mylittleredgirl on February 9th, 2005 02:45 pm (UTC) (Expand)
(no subject) - nenya_kanadka on February 10th, 2005 09:54 am (UTC) (Expand)
(no subject) - mylittleredgirl on February 10th, 2005 03:29 pm (UTC) (Expand)
(no subject) - nenya_kanadka on February 16th, 2005 10:35 am (UTC) (Expand)
indie: S/J hugindiefic on February 8th, 2005 09:22 pm (UTC)
Oh hugs, sweetie. I've been struggling with depression lately and my heart just aches for you. Granted, I don't know you well, but just seeing your name next to a post makes me smile.
Little Redmylittleredgirl on February 9th, 2005 02:52 pm (UTC)
Oh no!! *cuddles madly* Depression is skeeeery and evil. It's supposed to be one of the major symptoms of this nonsense I have, but I've been really fortunate to avoid it during this particular relapse -- although occasionally it seems to still knock at the door. I have just immense respect for people who struggle with that on a more consistent basis -- and hell, that must be even *more* of an "invisible illness". (Like... I try to get away with not calling this 'chronic fatigue', because I get the response of 'oh, yeah, I've been kinda tired lately, too'... but I can only *imagine* the crap people say in response to 'depression').

Anyway, that was babbling. Thank you so much for your comment, and I'm so glad that I can still induce smiles in others even if just from inside the wee computerbox :)

*hugs lots*
Jara Dax: Lusty Heathen: smoochattackwoodface on February 8th, 2005 09:23 pm (UTC)
*clingsnugglecuddlesmooch*
Little Red: trek - naomi wildman - jen717mylittleredgirl on February 9th, 2005 02:52 pm (UTC)
*is attacked by smooching* eeeeeeeeek! :)
(no subject) - woodface on February 9th, 2005 03:04 pm (UTC) (Expand)
(no subject) - mylittleredgirl on February 9th, 2005 03:07 pm (UTC) (Expand)
Sarah (aka Smish): Atlantis - Shep/Weir One Daysmishpixie on February 8th, 2005 09:24 pm (UTC)
*takes off ignorant hat*

I actually had no idea! Not sure how I managed that but *HUGS!!!!*

And am in the UK (alas with no Sky to actually watch the ep), but it's about 3 quarters of the way through and *looks out of window* no pestilence just yet... Which is good, because I didn't get around to building that super duper hyper protective bomb shelter that I'd planned...
Little Red: sga - fandom porn! - dark_faith366mylittleredgirl on February 9th, 2005 02:55 pm (UTC)
"Cloudy with a chance of pestilence..."
Heee! That's good! :) You probably would have if we'd been lj-friends longer, for I used to complain about it much more! I've been trying to distance myself from having the identity of being "the sick one"... but it doesn't always work ;) And really, babbling about Torri and Sparky and PORN! is much more fun and exciting. :)

And darling, your vids give me much GLEEE on bad days, I have to tell you! I've been known to meter out activities based on them. I'm all "Okay, I want to watch viddy goodness... so... I can watch one after I shower. Then after I have breakfast. Then after I do exercise." Etc. :) ATLANTIS IS CURE FOR ALL ILLS!!
Re: "Cloudy with a chance of pestilence..." - smishpixie on February 9th, 2005 04:54 pm (UTC) (Expand)
Valerie - Postmodern Pollyanna: finewiliqueen on February 8th, 2005 09:36 pm (UTC)
{{{{ hugs }}}}

The Spoon Theory was introduced to me by tryslora as no less than her utter salvation.

She being one of several folks in my circle of acquaintance with fibromyalgia. The prevalance of autoimmune disorders among my nearest and dearest is a scary, scary thing. And I love you and want you to take care of yourself, and hope you don't EVER feel like you have to be more than you're up to being on my account.

{{{{ more hugs }}}}
Little Redmylittleredgirl on February 9th, 2005 02:59 pm (UTC)
... wow. I'm not sure it has SAVED me yet, but it has given me a lot to think about, and a really nice way of framing it for myself and others. I've had this for three years, but I'm yet to figure out how to live with it. That metaphor's a good place to start. :)

*hugs LOTS* I appreciate the thoughts a whole lot. You rock my world, babe.

In other news, your "funfic" term is spreading through the interweb. :) It's being liberally batted around on john_elizabeth now.
(no subject) - wiliqueen on February 9th, 2005 03:09 pm (UTC) (Expand)
(no subject) - mylittleredgirl on February 9th, 2005 03:16 pm (UTC) (Expand)
you're thinking of mr wizard: Borg of Joycleverocity on February 8th, 2005 09:52 pm (UTC)
i have nothing useful to say but bring giant infinihugs
(in fact I have about a thousand things to say, mostly along the lines of "I know what you mean!!!1!eleven!" about one thing and another but can't get any of them to come out right. Or at least, you know, not completely stupid and self-absorbed.)

*hugs!!*


Nenya Kanadka: Naomi Wildmannenya_kanadka on February 9th, 2005 10:11 am (UTC)
Re: i have nothing useful to say but bring giant infinihugs
WHO made that icon?! "We are the gleee!ful: resistance is futile!" That's both hilarious and mildly disturbing. :D
Borg of Joy of Borg of Joy of Borg - cleverocity on February 9th, 2005 05:00 pm (UTC) (Expand)
Re: Borg of Joy of Borg of Joy of Borg - nenya_kanadka on February 10th, 2005 11:04 am (UTC) (Expand)
dark_faith366dark_faith366 on February 8th, 2005 09:53 pm (UTC)
*hugs*

I didn't really had the occasion to talk with you or anything but te ONLY impression I get from our little interactions is that you are an awesome person. You are funny, warm and you have sooo much talent...
So I just hope you'll get better and have anything you need and deserve.
I have been in quite a depression for one year now and the only solution I found was to get away from everything that reminds me how cruel and crazy and frightening this world is.
That's my solution, my exit door, I guess there's one for every problems. I hope you'll find yours and do whatever you think is necessary, I'm sure people will understand.
Little Redmylittleredgirl on February 9th, 2005 03:06 pm (UTC)
Awww, thank you so much. *hugs* I am very lucky to have a lot of support from my family and friends (although most of my friends live far away now).

My 'exit door' has mostly been to bury myself in fandom and gleeee, so it's so nice to have that, but I can't do that all the time anymore. :)

Thanks so much for the comment, and *HUGS*, and I'm glad you have found something that works for you!
Jessij_guda on February 8th, 2005 09:57 pm (UTC)
All the best, sweetie.

*hugs*

Wait. You don't even want to be spoiled about Teal'c and Hammond and the underpants gnomes? But the song is so great! And the Tinkerbelle costumes are sure to win emmys!
Little Red: doggett last stand - lyssiemylittleredgirl on February 9th, 2005 03:04 pm (UTC)
OMG NO! U HAVE SPOILED ME FOR THE UNDERPANT GNOMES B1TCHH0R!!! *sobs*
רותם שחר (Ro)roothekittykat on February 8th, 2005 10:00 pm (UTC)
::bigmanyhugs::

I really hope you don't disappear! I'll miss you! But, if you do, I'll have ShWeiry fic for you when you get back :) You need to do what you need to do in order to be able to get through the day, and if that means cutting down on things, then that's what it means. I'll still be here :)

with all that you're not eating, it's no wonder you're underweight! Fruit is wonderful stuff. I need to eat more of it.

I just finished reading the spoon theory, and I'm almost crying.

Little Redmylittleredgirl on February 9th, 2005 03:09 pm (UTC)
Yay! FIC!! Well, I'll stick around for that, then ;)

I'm really not going anywhere at this point, just going to be here *less.*

And yes, it's ridiculous all the stuff I can't eat!! *glares at doctors* But I suppose it's better to be able to eat *something* rather than to always get sick. Grr. But FRUIT IS GOD. OMG. *could live on fruit*

And... *pets you* don't cry. *sends love and promise of eventual fic maybe*
Human Collaborator Flunkie Pool!fic Muse: Wonder/Beauty (by Matilda7)joyfulfeather on February 8th, 2005 10:02 pm (UTC)
*HUGS*

The Spoons thing was terrifically enlightening. It's easy to forget, to never think about the fact that there are people who can't take for granted the things that the rest of us do.

The realization that "I'm not alone in feeling this way" is quite possibly the most amazing feeling in the world. Like a punch in the gut, but in a good way. I'm so glad you've discovered that no, you're NOT insane for any of this, because that sort of self-doubt can only hurt your recovery.

Major kudos for doing all that you do, despite being sick! And for being the absolutely amazing, wonderful person that you are.

so I will ask the professionals and hope they don't laugh at me for not being able to figure it all out myself.

They won't. NO ONE figures it all out for themselves. In most things, really, but especially diets. Seriously.

I think 'Threads' airs here on march 11, which is also the air date of what is considered to be the very best BSG episode ever. Can't wait. ;)
Little Redmylittleredgirl on February 9th, 2005 03:22 pm (UTC)
The realization that "I'm not alone in feeling this way" is quite possibly the most amazing feeling in the world. Like a punch in the gut, but in a good way. I'm so glad you've discovered that no, you're NOT insane for any of this, because that sort of self-doubt can only hurt your recovery.

YES!! *bounces* I have been all enabled and stuff to feel this way, and that's very exciting and a total relief. Which, in turn, makes me feel better and more wiling to tackle things.

They won't. NO ONE figures it all out for themselves. In most things, really, but especially diets. Seriously.

Yeah, I hope so. I guess every step of this process has sort of eroded my confidence in the medical community as a whole! Amid the, like, 7 doctors I've seen in the past year, one of them was this really awesome immunologist dude. Everyone before and since has kind of sucked. And... I get left in this position of them going "yeah, well, do this. Um... it didn't work? Well... rest up and call me and let me know when you're better. I start to feel like I'm wasting their time because I keep coming to them with the same complaints and nothing changes or gets resolved. Er... *end random bitchrant*. :) But this *is* something I can ask them about! :)
MsRavenmsraven929 on February 8th, 2005 10:04 pm (UTC)
*gives you long extended hug*

Disclaimer: I haven't read the other comments, so I apologize if I'm repeating others' advice.

:( While I can in no way fully understand, I do know someone who has gone through something similar. It's difficult when you're suddenly not able to be you. My other friend had serious issues with saying no when people asked her to do stuff - even though she knew she did not have the energy.

Basically I just feel like every minute of every day I'm disappointing everyone, mostly myself -- that in trying to do a little bit more I realize all the things that I can't do

*hugs* Don't feel that way. I know...easier said than done.

In addition to seeing nutritionist, have you thought about seeing a therapist? Seriously. My friend did it and it helped out a ton. What you're feeling isn't trivial and you're probably putting a lot of unnecessary stress on yourself. Yes, it's one more thing to do, but you should really consider it. Your mental health is just as important as your physical health.

I just re-read the rest of the paragraph I pulled the quote from. :( Just because you don't have a cast on your leg doesn't mean you're less worthy of recovery time. If anything, this is worse. This is all you. It's not like a doctor can put a cast on your immune system. The people who love you and care about you will learn to understand that. Ignore everyone else and stop beating yourself up over it. Again...easier said than done.

So back to my main point, we, your friends and loved ones, will always be here to support you, but sometimes, a professional opinion/POV may just be what you need.

*gets off soap box*

*hugs*

Little Red: trek - naomi wildman - jen717mylittleredgirl on February 9th, 2005 03:33 pm (UTC)
My other friend had serious issues with saying no when people asked her to do stuff - even though she knew she did not have the energy.

*nods* I think it's really difficult to switch mindsets. I'm used to taking things on -- especially social things -- with the notion that "somehow this will get done." I am used to having a brain that can operate quickly and a body that I *can* force to stay up all night if need be... but that's soooo not true anymore. And taking stuff on and then wanking out on it is really much worse for everyone concerned than just erring on the side of caution and saying no. *makes note of that*

*hugs* Don't feel that way.

*grins* Okay!! (I take direction well. *hugs*)

In addition to seeing nutritionist, have you thought about seeing a therapist? Seriously.

My dad was pushing me to go to one back when I couldn't eat at all, because he was convinced I had an eating disorder. Now that that's been taken off the table... the tune has changed quite a bit. I asked my parents if the offer was still there a few weeks ago, but... yeah, they're reluctant, and have good reasons. The thing they don't like about "therapy" is that if I'm not going for a specific cureable thing (like, in this case, a vague "eep! help me cope!"), it can drag on forever and won't be that helpful. And if I do know exactly what I'm looking for -- in this case, coping strategies -- there must be cheaper and more effective and personally-directed ways of accomplishing that, especially since my mom says that therapy can "make it worse", because then I start actually thinking up more ways in which I'm screwed up and need help. Especially because I'd rather not be medicated, the going family theory is to avoid it... but if stuff doesn't stabilize soon, I will bring it up again.

The people who love you and care about you will learn to understand that. Ignore everyone else and stop beating yourself up over it. Again...easier said than done.

My family and friends are awesome. :) If I state my boundaries clearly, people almost always respect them. It's really just a matter of rallying the energy to *think* of what I need to say, and then to actually have the conversation! When my parents get frustrated with my lack of progress, they'll start asking me whether I "want to stay sick", but if I can actually answer them rationally stuff gets better. (And it's a really good question, so I don't blame them for asking)

Friendly opinions are SO much more valuable than professional ones!! *hugs you* Sorry to have rambled on here, but you made such an awesome comment that got me thinking a lot! And your CARD!! I squeee'd a whole lot. :) :) :)

*loves on you*
(Anonymous) on February 8th, 2005 10:04 pm (UTC)
I have read your blog for some time with a great deal of interest and empathy. I was diagnosed with a chronic health problem (also auto-immune system) 5 or 6 years ago and I am still amazed by how much it has changed my life -- I simply don't have the energy resources that I used to. Just like you said, it can be really frustrating -- I often wonder, what happened to my life? -- but I do believe that things get better. I have always been encouraged by your upbeat attitude and it seems that you really are trying to make things better, taking good care of yourself and so forth -- at the end of the day that is all you can do and you really must. So, I just wanted to offer some support and encouragement -- from your LJ it seems that you are doing a good job with things and it will improve.

Take care,
ela
Little Redmylittleredgirl on February 9th, 2005 03:34 pm (UTC)
Wow. *hugs* Hi, it's nice to meet you! :)

I have always been encouraged by your upbeat attitude and it seems that you really are trying to make things better, taking good care of yourself and so forth -- at the end of the day that is all you can do and you really must.

Wow... that was really awesome to hear. *sniffles* Thank you so much for your encouragement and for speaking up out of lurkerdom... I have no idea how you found me, but I'm feeling really really cool right now that people I don't know are reading my random thoughts!

*hugs*
redbeardredbeard on February 8th, 2005 10:05 pm (UTC)

I've already cut out sugar, dairy, all processed foods, alcohol, coffee, yeast, and flour, much of that for over a year, and I haven't died. But to take away FRUIT


Wait, is there anything left to eat? I'm worried about you, hon, that your health may be linked to your NOT eating anything at this point....Of course, I do cure all things with food, but....let's just say, it sounds like you need the curative powers of a good braised pork shoulder.
Little Redmylittleredgirl on February 9th, 2005 03:37 pm (UTC)
Wait, is there anything left to eat?

Of course! Brown rice (unseasoned) and possibly other whole grains (the books disagree on this front), all vegetables, and meats-without-evil-hormones-and-stuff!! Oh, and rice cakes. GRRRRRR. Yes, blandest and most annoying diet EVARRR.

I'm worried about you, hon, that your health may be linked to your NOT eating anything at this point....

My dad, who is also a jewish mother :-P, had a similar thought. I'm going with the theory that me keeping *some* food down is better, and that it can't be bad to be eating a fairly pure diet. But this is why I want to go to a nutritionist -- it just seems like I'm cutting out too much at this point! And just because it says something in a book doesn't mean it's a good idea!
(no subject) - redbeard on February 9th, 2005 05:03 pm (UTC) (Expand)
suesjhw_tolerance on February 8th, 2005 11:21 pm (UTC)
knitting circle

::perks up:: Knitting circle? Maybe we can start an online knitting circle....

::looks at socks waiting to be finished::

Keep knitting, it's good for the soul and a great stress reliever.
Little Redmylittleredgirl on February 9th, 2005 03:40 pm (UTC)
*loves on knitting*

I'm such a compulsive knitter, HEE! (Not sure if there's any other kind, really...) I've been thinking that at least some of my stress the past few weeks has been that I'm between projects ;)

We should totally start an online knitting circle! GEEK KNITTING! :-D (I really am knitting geeky things -- I'm going to knit a baby blanket with chevrons on it for maching_monkey)

My sister bought me a book for Christmas called "mindful kniting", all about how knitting can be a form of zen mindfulness meditation. It's so neat.

*needs knitting icon badly*

(also -- HI!! I will add you back post haste)
stexgirl2000stexgirl2000 on February 8th, 2005 11:30 pm (UTC)
:hugs:

Ask about your thyroid, I mean, it never hurts to ask.

:hugs again:
Little Redmylittleredgirl on February 9th, 2005 03:41 pm (UTC)
*nods* Definitely true. I will ask about it again.

Thank you! *hugs more*