Pain Rant, etc.

[brightlotusmoon]

Sometimes I wonder, legitimately, if I did all this to myself. Starting in my childhood. When I defied the doctors and therapists and refused to comply with the leg braces, the exercises, the therapy. Sometimes I wonder if it is mostly my own fault for believing I could just breeze through life without worrying about crumbling neuromuscular fallouts.
Mm.
The migraine has been tamed enough so I can do things without sobbing. The standard aches, spasms, and stiffness of my primary disabilities have all abated slightly. I'm sitting here thinking that if only I did this, if only I did that, if only I hadn't done this, if only I hadn't done that... Etcetera.
The litany of those who can't and won't empathize: "You're just too weak. You brought this on yourself. It's all psychological. It's not as bad as you say it is. You're lazy. You're crazy. You're selfish. You're faking it. You're lying. Stop whining. Stop complaining so much. Just get over it. What is wrong with you? Why can't you just get better?"
I cry myself to sleep some nights when I'm alone and it's silent. I tell myself over and over, "It's not so bad. You're a mild case. Think of all the people with your conditions who have it so much worse than you. Who are you in comparison? Stop crying. Get up. Get through it. Be a warrior."
I'm. So. TIRED.
I don't know if my loved ones really know how shitty this feels. If they have, they haven't said anything. I don't want a psychologist right now, unless it's free or cheap. I know I probably need one. My doctors and specialists already know what's wrong, and they can only offer what advice and medication they can. And that's fine. They know this is permanent. They know I'll have days like this.
Besides, I'm PMSing. That's not an excuse. Yes it is. Maybe.
I'm so fucking tired.

(I need a job. Either full-time, or part-time and well-paying. But I don't know if there is anything out there for me, because what I know how to do is so specific. And I don't have a Masters in Library Science. They like that sort of thing. I don't want to file for disability. I can work. I'm happy working. I just want someone to like me enough to take me and keep me because I'm awesome.)

I'm just very tired right now. Today is just one of those days. Maybe it's one of those weeks. Or months. Everything hurts in so many ways, and I can't even describe it.

When it starts getting better, I'll celebrate.

Comments

[el-esteleth.livejournal.com]

*hugs you lots*

If there's anything I can do, like listen or whatever, just holler, or PM, or whatever. :) I know it's not been long since I found your LJ, but I'm here should you need someone who has a good ear. :)

*hugs more*

Figure hugs help sometimes, too, even if they're virtual ones. :)

*hugs more more*

[brightlotusmoon.livejournal.com]

Aww, thanks, sweetie. That does help, it really does help.

[el-esteleth.livejournal.com]

*hugs*

Figure it's the least I can do since your posts have helped me so much to realize that I'm not alone with all the health issue stuffs.

*hugs more*

*even more hugs* :)

Also, Spotty Alexis gives hugs too:



:)

[brightlotusmoon.livejournal.com]

Awwwwww, hi Spotty Alexis!!

[el-esteleth.livejournal.com]

*grins* Oooh... I don't remember if I've told you how I got a hamster ball for her. I had to tape the air holes in it over with masking tape so her itty bitty feet wouldn't get caught in it and then punch holes in the masking tape with a pin. But now she LOVES her hamster ball cuz she can climb on the masking tape and it makes the ball roll faster than if she was just walking around on the slick surface of the ball. She no longer looks at me like I'm crazy when I put her in her hamster ball. :D Hehe.. Nothing like a funny gecko at the end of the day for cheering ups. :)

[brightlotusmoon.livejournal.com]

Really? OMG, that's so cool.

[el-esteleth.livejournal.com]

She's sooooo funny too when I put her in there. I really need to get a video camera so I can record her antics.

Oh... and yesterday I did a Dumb Thing(tm) with her because I thought she was sleepy. I had been making a blankety type fort on my bed and putting her in it to play and this time I just put her on top of my comforter with no barriers between her and the side of the bed, and off she scampered, away from my hand, and I was like "Oh dear" except with a different word for dear, and thankfully caught her when she got to the side of the bed and was like "Cliff, I don't know how to get down this cliff."

She is a fun pet. :D

Also, my best friend just shared this kitten video with me which made me laugh, so I thought passing it along would be fun. :D That is, if you like kittehs. :D

http://www.youtube.com/watch?v=McNRDGwitts&feature=player_embedded

[brightlotusmoon.livejournal.com]

OH MY GODS THOSE KITTENS, OH MY GODS ONE OF THEM WAS ON TOP OF ANOTHER AND THE LITTLE PAWS AND OH MY GODS KITTENS KITTENS KITTENS!

My friend Alison and I went to the local animal shelter to donate sheets and blankets, and I stopped in to see the cats. There were two female kittens who were mewing and crying and reaching for me, and if I didn't already have three cats, I would have taken both of them on the spot. I can only hope they get adopted soon.

[el-esteleth.livejournal.com]

*GRINS* Kittens are so cute. :D

Awww, I hope they get adopted too. I would so totally have cats if i weren't allergic to them like massively. I love kittens and cats and all things furry that meow... but very sadly allergies mean that I can have no pets with fur.

But... that means I get to have Spotty Alexis. :D Which is a Good Thing(tm). :D

[brightlotusmoon.livejournal.com]

I understand. I have friends who are allergic to cats, but they love cats so much that they take medication and get regular vaccinations just to able to own cats. Cat lovers are intense! ;)

[el-esteleth.livejournal.com]

Oh, wow. I didn't know there was medication for kitteh allergies.. hehe.. coooooool. :D

[brightlotusmoon.livejournal.com]

Yeah, medicine is making all kinds of advancements in pet allergy prevention! Some people just need a shot in the arm every now and then, with the occasional antihistamine. They still need to vacuum and dust and all that, but they're better. I've also known people who were around certain cats so often that their immune systems adjusted and they stopped being allergic to all cats.

[saffronrose.livejournal.com]

After I'd had my cat Mithril for a bit, I realized that I was allergic to her and other cats. It turns out that instead of being sick with a mild cold most of the year, I'd been allergic to the cats we lived with. It's much worse with longhairs, though!

I shrugged, decided I couldn't justify taking her to a shelter just for a few inconveniences, and just kept A-Hs on hand.

We have hypoallergenic dogs who themselves have seasonal allergies which cause them to itch and scratch ferociously. So we give *them* A-Hs in some cheese.

[saffronrose.livejournal.com]

My son had a leopard gecko the classroom was shedding, and I don't think we ever would have thought to try that!

That's so cute!

[chorus-of-chaos.livejournal.com]

days like those are the ones where I wish I had the punching bag hanging up in my garage and I could go out and pummel it and pretend it's every person whose ever said such unthinking and cruel things to me.

[saffronrose.livejournal.com]

I don't know what your childhood was like. What was asked of you was probably overwhelming to contemplate, much less to do.

The litany of those who can't empathize and don't understand is hard to withstand when you hear it so bloody often. None of it is true. You are so very tired right now because pain wears you out, and wears at you.

You can't get the same quality & quantity of sleep or rest neurologically typical folk do--and most of my life, neither could I. I can't when I've got a cold, because I can't breathe well enough to get to, or stay, asleep. The same holds true when a virus or allergies gives me PND, causing me to cough uncontrollably. Can't sleep through coughing, and since I can't use codeine/Vicodin, ain't nothing they can give me that's stronger than OTC cough meds. 8 oz of whisky almost does it, but that's a *lot* of whisky, and I'm picky about my singlemalts.

You said:
(I need a job. Either full-time, or part-time and well-paying. But I don't know if there is anything out there for me, because what I know how to do is so specific. And I don't have a Masters in Library Science. They like that sort of thing. I don't want to file for disability. I can work. I'm happy working. I just want someone to like me enough to take me and keep me because I'm awesome.)

Are you sure you haven't been in my head of late? Except for the filing for disability thing, it's all something I could have thought or even said out loud.

[brightlotusmoon.livejournal.com]

I don't remember too many details of my childhood. There are major blanks throughout the first nine years. That might have been the start of the undiagnosed epilepsy. But I do remember being so overwhelmed by all the physical therapy.
I went to a public elementary school in Brooklyn in the 1980s, and the school was specifically designed to help disabled kids (wheelchair access, Braille, sign language, physical therapists, etc). I was told I had a genius IQ in reading, vocabulary, spelling, grammar, etc; but my math skills were atrocious. They decided that the way the cerebral palsy affected my brain had something to do with that.
For all my English classes, I was moved up a grade because I was too far ahead of my age classmates. But I was also tiny for my age and I was bullied. On top of that, I was often called out of class for physical therapy treatments, alone, in the school gym. On top of that, I would go to a disability center for more therapy a few times a month. I was a tiny, shy kid, with sensory processing issues, and it was all crazy.

I may be in your head! Oh, life, am I right?

Yay, whiskey. I like Jameson's and Aberlour.

[saffronrose.livejournal.com]

I had an EEG around 7-8. I think I'd had two events that looked like seizures. I didn't know why I had to have all those little pins in my scalp, I was in a big dark room alone, and I had no idea how long I was going to be stuck like that. When I saw what EEG labs look like now, I was very pleasantly surprised--but that's 45 years of advancement for you.

Turns out I had inhaled some pesticide that was a nerve poison. I had been attempting to blow up a beach ball we'd brought with us from Okinawa. Whatever came from Okinawa had been sprayed with pesticide, and you get the connection. We tossed that toy into the trash.

I'm sorry you were bullied. My son also was bullied at school. He was bright, but he couldn't get calm enough to focus on his work. He was shorter (now he's 5'7"), too, and his mood swings didn't make him many friends. He was always able to stand up for others who were being bullied, but until the last two years, wasn't doing a great job on standing up for himself. Something changed, and he made himself too hard to pick on.

However, he never had quite the issues you had then. He did go off to the "resource center" to work on his deficits, but so did a number of other kids. He did go off for OT, but that was apparently no biggie.

[alumiere.livejournal.com]

Hugs. Love. Support. Empathy.

Please stop blaming yourself. I completely understand the angry (that seems to be my general state of being these days, but I am not coping as well as you do), but chances are small that your past has had any major impact on how your body works now.

Tired, yes, I often wonder how you manage to keep such a good attitude; there are so many days when I just want it to stop, even if it means I stop too (not that I'd do anything to cause that, but you know what I mean).

[alumiere.livejournal.com]

Oh, and a suggestion on possible jobs - there is a newly funded federal jobs program one of the (dis)ability blogs I read posted: http://www.opm.gov/disability/PeopleWithDisabilities.asp

You do not have to be on disability to qualify for the positions, you just have to have doctor(s) documentation that you have a disability.

[brightlotusmoon.livejournal.com]

Ooh, THANK YOU. That's a new one I hadn't seen. I will totally jump all over that.

[brightlotusmoon.livejournal.com]

*nods* It's... really, Livejournal is my only big outlet in which I allow myself to vent like this. My empathic tendencies make it almost impossible to look anyone in the eye while I say these things. I look back on these entries much later on and I try and evaluate my mindset. But... it's hard. You know.