*whine*

[mylittleredgirl]

Wanted to go to Tae Kwon Do today and go to movie with Kaya, but am feeling all kinds of illmonodeath and so lack the energy to brush snow off my car.

So will stay home and buck up and hope that I feel MUCH less dead tomorrow, when I have to work a whole day on the early early coffee shift.

It's bugging the crap out of me that it seems like I am no better, if not worse off, than I was last November when I made a GIANT FREAKING ROAD TRIP! What the hell gives? I came back from that psyched to start working full-time and moving to a new place and now I am THIS. AGAIN. SOME MORE.

Today's a bad day for my dad to give me hell subtle hints about how I have stopped looking for more work and am failing lots at doing work for his company. What makes him think, really, that me signing on full-time with a temp agency or other position is a rational move when I can't even finish the two-hour-a-day work he has given me? And it's not like I'm writing fic instead; I haven't had the energy to even WATCH any of my shows for the past three weeks.

I hate feeling useless, and I hate feeling like I'm not going to be useful again because the progress is so fucking slow, and I hate being a financial drain on other people, and I hate that I can't just snap out of this because it actually is a physical condition. Gah.

I've hurt all over for the past little while, which is one of the classic signs of my immune system suckily (yet valiantly!) trying to fight something, so I'm sure everything will seem less FUTILE in a week or two. It's just really impossible to make any sort of life plans or get a real job or get better when every third week is a total washout, and even on GOOD days I feel like most people do the first day they're coming down with something -- disoriented, sluggish, mentally drained, lack of energy, operating only on one cylinder -- and on the rare BEST days the fog only clears for an hour or two (though OMG, what a beautiful hour or two. *angels sing*).

I know it's hard for everyone to feel like there are expectations placed upon them that they can't possibly meet. I'm just having a hard time with the expectations I can't meet being so completely and totally RIDICULOUS. Like, it took me four days to get up the energy to take my humidifier into the kitchen and refill it, but it's just *embarrassing* to ask my mother to please do that for me because I can't mentally cope with it. *rolls eyes*

So yes, I want to crawl into a hole and DIE. *smirks at unnecessary DRAMATICNESS*

But I am doing good things. As always when my mono CFIDS acts up (may as well use ACTUAL acronym now that I have one, since I'm kinda through pretending that this isn't chronic), everything I eat makes me feel ill. This results in me getting all paranoid that everything I eat will make me feel sick, and, voila! an eating disorder is born. (Well, except for the part about "body image issues" I think being essential to something being classed as an eating disorder, and, if anything, I hate the way I'm all skinny and count-my-ribs!-y, because who wants to cuddle up with that?) However, I'm still making myself eat good things despite that so I don't end up like I did last February, so, I'm proud of myself for that. And I'm still making myself get up before 10 a.m. (have given up on "6 a.m." for this week), despite how I feel. And though I'm whining here, I'm working hard to not let my thoughts spin totally out of control into panic attack mode.

So yes. I haven't completely collapsed this time, and that's good. It's just this two-steps-forward three-steps-back dance is starting to GRATE. And the fact that I feel the need to whine about it instead of constanthappygleee grates as well. (however, the fact that more and more people are using gleee!lists as coping mechanisms on their bad days? rocks my little fucking WORLD and makes me feel so very useful on some level, even while still in pajamas). BLAH.

*needs fluff*

Comments

[in-parentheses.livejournal.com]

So you've been officially diagnosed with CFIDS? It's good to know, I guess, and it makes more sense than endless mono. But I'm very sorry for the suckiness.

I don't remember if I put you in touch with her before, but my friend colorwheel (whom we actually call Colorwheel in real-life) has had CFIDS for a long time and knows all about the various treatments and is in general an awesome person and would be happy to talk to you, so if you want her email address, let me know.

[mylittleredgirl.livejournal.com]

Well... CFIDS isn't really something that can be diagnosed. More than a year ago I was told that I could class what I had as chronic fatigue -- since that really is an umbrella that goes over a number of different causes and just defines a list of symptoms (all of which I have in spades), but was advised not to, because "chronic fatigue is a lifestyle." So I went on calling it 'mono' because I didn't really want to admit to this being chronic, and because a diagnosis doesn't really help with anything now that I'm not in a position to need to bring notes to my teachers anymore.

So I've kind of diagnosed myself with it, with medical permission. Most of my doctors wrote me off months and months ago, since they can't actually do anything, and are just like "yeah, sleep it off for as many years as it takes, k, bye." Which is frustrating, because I lack the energy to really FORCE treatment plans that may be dead ends.

Er. /rant

I'd love to hear what your friend did in way of treatment plan, though, because it might give me some idea about where to go next with this, if she wouldn't mind telling me!

[amilyn.livejournal.com]

*hugs* re: unhelpful (and, I'm sure, also frustrated) doctors.

*hugs* re: the helplessness of you and others none knowing what to do and all of it feeling hopeless and non-helpful. I do get that part (though from a different perspective).

::more hugs::

[mylittleredgirl.livejournal.com]

It's frustrating for me to keep going to see a doctor when I'm not actually improving all that much, because yeah, it frustrates them, too, and they give me the "wtf, I can't tell you ANYTHING MORE than I did last month, so stop coming here" sort of looks.

So yes. I want to just kind of disappear into a cave where my illness doesn't affect anyone else and sleep it off -- but sadly that doesn't really work, since caves in this area would require central heating and I have no moneys.

[amilyn.livejournal.com]

*hugs*

I SO get that.

I spetn the first 30 years of my life being told, "Well. It's a cough. It's probably a virus. You seem to be managing. There's nothing I can do for you. My nurse will bill you on your way out."

Only with THIS doc has it been, "Wait...you've had this at least once a year for over 25 YEARS??? I think we should TREAT that. Here are some ideas. Come back if it doesn't get better."

I was just completely flabbergasted by that...but thrilled, even though it only helped marginally--to have her want to try was everything.

Course, she's like, "I can't fix it. Stop talking about it." re: the twitchies in my leg.

And, of course, none of this stuff makes me non-functional long-term.

Ugh.

::more hugs::

Go read fluff.

[mylittleredgirl.livejournal.com]

Yes, and *they* are the ones with the degrees, so who am I to be experiencing symptoms they say are not there? Clearly, I'm in the wrong here.

I had such an awesome specialist who totally saved my LIFE and my sanity last year, but he's in Rhode Island.

Re: twitchies -- my mom's doing accupuncture for necktwitchies that western doctors had that same reaction to, and it seems to be helping. I'll report to you once she's been in treatment longer to see how it ends up.

Mmm. Fluff.