… The only thing worth saying today is that I only had one attack and it was only pretty mild… and I didn't fall over either… the paperwork for my wheelchair came… my outside christmas decorations look amazing and most of the christmas cards are done … I'm so proud of myself 🙂
thats all.
I think the hardest thing about getting to know myself all over again is that I really don't know anything to begin with. No. Seriously. I'm not kidding. I dont know my own limits and the ones I make for myself are crap.
Oh, and I have trouble being taken care of… Not like that's any shocker. is amazing to me, I appreciate him and everything he does more than I can express… even when I get mad at him for it. Today, Yesterday was a good example of that… I don't really sleep good and when I get tired all of my spastisity gets worse… all my jerking gets worse. You get the idea, it's not pretty. But I never want to admit that I'm tired… sometimes I don't even know that I am, I just know all the rest of its starting to drive me crazy and I have to deal with it. You'd think by now I'd get it… and part of me resents the fact that he can see it and I have no idea.
So the sweet thing that he is goes into our ugly little bedroom and "lures" me in… well, lo-and-behold I pass out in like 15 seconds! …yet I didn't know I was tired. But when I got up I felt much better (of course)… and it's not like this was a long nap or something… It was only an hour or two… but it was the point of the thing. He can read me better than my stubborn ass can read myself.
yet I get upset with him over it because there were things I wanted us to do today … how stupid am I? really? So in the middle of my mashed potato making pseudo-rant about how I wanted us to make gingerbread depots and blah blah blah he sweetly, calmly, gently tells me how much he wants me to get better… how important it is for me to get better and stay better-er. And yeah, that would be nice but we'll have other days together… other times together and we'll get it done. But, I have to get better and he loves me … Wow… talk about yet another reality check right there, right?!?!
No, he doesn't make me go to bed, he doesn't force me or do anything like that … ever …he just goes in there all subtle … and he takes care of me… he is good to me …sometimes I doubt what I do for him. So many parts of me are broken, so very, very many parts of me and the frustration grows to the point where I don't want to do ro try anything but sit in my little juvenile world where I feel like nothing can hurt me. I get trapped there behind what I feel like is protecting the last bit of pride that I have. It's an Illusion…and really, it's all crap too. I want to do better, and be better… for him and of course for me too. I want us to have this fantastic life together and sometimes me wanting to cram EVERYTHING into too little space gets in the way of that… because my body doesn't work that way. My body needs to have that reset button hit in order for us to keep enjoying our day. I have to do it. He sees it. Why can't I?
This is like other issues we have with other things too… it's mind over matter… but… its minding the idea that there is no super girl… everything has a price and if I want to get the most out of our life together … well, I need to just stop fighting the inevitable and learn the signs. I've had this body for 26 years … do you think I actually knew them? heck no. I keep trying to hold myself to a standard that's impossiable for me to reach. At least I see that now… the question is what do I do about it?
I don't know, really. I want to be able to prove to myself that I can go beyond the limits my body has, which is dumb… I want to be better, faster, smarter, stiller, better… better. yeah, that's the word… better. But I can't do that until I let so much of this other stuff go… it's really like… Buddhist… I think it's buddhist… I need to think about it … on three… try to relive my undergrad….1-2-3…
Nirvana …cessation of suffering… describe the profound peace of mind that is acquired with liberation. It means something like"blown out" ((think birthday candles… not hurricane Sandy)) and refers, in the Buddhist context, to the imperturbable stillness of mind after the fires of desire, aversion, and delusion have been finally extinguished **Thanks Wikipedia**
I think that I always want to do these things … but I have no idea how to get past it … the one doctor I see thinks that it's normal to have doubts like this… the way I grew up made it so a lot of things are now only starting to be posible. I feel like I've had so many years away from all of that… crap… so much time to remake myself into what I've wanted to be… but time takes time … and with my body and my issues and my mind … it takes even longer. so… now it's waaaaaay later than I wanted it to be and I am completely wide awake…3 hours of sleep "tonight" … and I guess when the sun comes up I'll try again… or I'll fall asleep in a cross stitch or something. This man loves me … and I adore him … and I want to be better for him, I need to be better for us…
I had a whole thing I wanted to say… then I fell asleep… and now I forgot … consider that one of the great side effects of all my medications ….
somedays I think I have so much to say … other days its like … wow, is this even me? Maybe it's the fact that we were doing all Christmas stuff all day yesterday and the Christmas trees up and it's really pretty. And today I just was a normal person I can even really believe it.
So far today's been a pretty good day for me!! I'm not sure how this works but it's always really nice prize when I wake up and I'm not like punching myself in the head, or shaking & shuttering, or any of that other crap. So I decided to make the most of the most of it…by being a good little housewife and trying to get stuff done
So I finally talked to my neurologist about the wheelchair thing… And he said okay got the script out for me!!!!!!!!!!!!!!!!!!!! and I dont know what I was so afraid of he told his nurse that I'm such a unique case that I wanted it why not?
I went over to the supply store and we I thought started getting going, thats when things started to go down hill because I was so excited and was trying to suppress myself so much and trying to hold it together so bad… but the idea of getting this thing is so exciting to me. The lady and I were joking because I'm sitting at the desk with her doing paperwork and I have my chirp, the jerking in the twitching and she said how cute it was. Usually I get all offended but today I just laughed because really it's better than having the cursing kind of Tourette's. She agreed with me and just said that I probably wouldn't be as adorable if I was spouting off the F word all the time. hahahaha. I'M ADORABLE!!! I mean … duh… but, really… it took me a bit to get back together again after that…
anyway, its going to be black with glitter spray paint so its classy but me … and that means I totally need some glitter and sparkle and all the things that make me happy in life. I would love it to be some kind of big bright colors but thats kinda tacky …and Im suppose to be a grown up… yeah right … but its really made to fit my body. They got one for me thats going to just be made to fit me specifically… its pretty cool.
So that's it I was just a normal day in the life of a somewhat homebound, Christmas card writing, wandering girl.
More later if I can think of it… But right now I got a separate make and washed away in some normalcy to enjoy before Lord knows what happens I go back to being my usual spastic self…
Welcome back to my oddities and ramblings … yep…we meet again… Something occured to me in the middle of the night as I'm laying awake listening to Ben Folds and wondering why the hell I can't sleep when the drugs are all suppose to make me tired…
After so many years of keeping this private, I've opened it up again to all the struggles, triumphs, joys and sorrows that made me lock it down in the first place. Opening myself back up to all of the things I've feared for the main part of my life. I've always been a person who keeps the things most important to her hidden… the more valuable it is, the more important it is for me to tuck it away like a packrat.
not like the Horders show … like the cute little fluffy thing..
but here we are again … come back out of my proverbial journaling closet and back into the wide open world … Somehow it was easier for me to be like this on Facebook where everyone seems to have verbal diareah than it is on here… Gee… I guess because thats just the way it is there… and here I want it to at least make sense.
So, How do I write about myself without making myself emotionally insufferable?! It's the perrogative of the writer to say what she needs to say … but without taking into account that I think someone might be reading this … well… it makes it so none of it's relatable… and why would I have gone back to making this public unless I wanted it to at least be relatable to someone else and so we can share the attention of shared frustrations? Right?
I think it's the idea that everything can't totally be "I" and "me" and "my" …even though it is … The issues here are so much more than they started out to be … for me … at least … and I want to try to see things the way they are for me, but the way they are for other people who are trying to find their way through this… and that makes me feel like im trying to have some kind of Jesus complex instead of just working my way through the frustration that is living with multiple movement disorders and comorbids and blah blah blah ….
Even as I was chirping the hell out of that walmart last night I was worried more about the way people were looking at me … at the cute little girl who started to repeat my chirp and we were smiling at each other while we were making those sounds back and forth … and I had to laugh. How can I take myself so overly seriously when I can see that some little kid who has no idea what's going on thinks that its cute … how can I try to make myself better by looking through whats going on around me … like the poor cashiere who had to have the worst of my shreaks closer to her ears than I would have liked …
but… in the end … those are projections that I'm making onto the world around me, not things that the world is forcing me to see….I don't have to be completely emotional about it if I can try to look at it as a part of the whole … if I can try not to hold it back to the point where I hit no return … but don't force it either to try to get it over with … so I don't end up in a gigantic dystonic mess all over the floor of the store.
I need to be less of an emotional pack rat. there's another lifetime of work for me to aim for! but… until then… an apple and some peanutbutter to make me not throw up the mountain of drugs … time for a hot cup of tea … watch the falling snow and listen to some good music … Sounds like a decent way to start this morning…
::end transmission::
my shrink said I need to work on sleeping ……………………………but i'm up… again… at 3:11.
I even went to bed like … after midnight
…but, the spasticness is better for the time being… its nice to have a bit of normal
So… and I went over to the big STUPID walmart that faces the wrong direction down in Allentown … like… stupid because it faces the REST OF THE MALL…. but we were talking about how with my issues I can either hold them back, or try to force them out to get it over with … well, when I'm just being myself …but we passed the dude with the salvation army ringing his bell … and for most of the day I was having a pretty mild time … well … the dude with the bell happened to have one that's close to the pitch of my shreaks…
and then it started… i'm shreaking at the same pitch and tone as the stupid bell!!!! So my dear one tells me that he knows this trick that really helps with stuttering… how about I try to focus on the word 'pumpkin' … ok so I tried it … over and over and over …
… well, i went from calling like a bell to shreaking the word PUMPKIN…. omg, so he felt awful… and i was irate over it because today hasnt been a good day for all my issues but it wasn't the worst either. Like I might actually be heading around the right corner.
i was just embarrassed and it was lame…I had to ask him to apologise to me about it, I just needed to hear the words even though I know that he was.
So the next suggestion was a word I'd have more trouble with… we turn around the isle… he suggests to me
sure… why not… I mean really… lets see what that does… All i did was start to have a major attack in the TP isle… and went back to squeek/shreaking. and having these awful urges all over the rest of my body…
It's taken me a few hours to just settle back in since we got home… thank god for drugs that make the insanity stop… and a great guy who doesn't mind me having a violent ticcing fit in the car before we pull out of the space…
oh, but he's pretty sure as soon as I tell the girls in the TicTalk group about this they're all going to kick his tush … I think it would be funny to see them try!
Well, once again I find myself the unsuspecting victim of another neuro appointment. I know that this is for the best… for my all over well being… but sometimes I feel like these people just like making me question myself.
Sure. I do that enough as it is … but… even in my ocean of self doubt I find that sometimes there are things that shouldn’t be messed with. I constantly doubt myself and my illness and my mental state to the point where I know I make myself worse worrying about it. I cant do anything to change it… I can’t really do anything but hold out until I can talk to Pen next year and see what they suggest for me. and who knows where that’s going to end up… Knowing my luck it’s going to be back to square one… oh wait… that’s pessimism and I’m trying to work on that somewhere… at least when I’m not too tired, or crabby, or icky… or all over just overwhelmed.
~*~
So, what was the title of this again, oh. my neurological double life…. Ever wonder what it means to try to be one thing but get home and know that you’re something else entirely? I always wanted to be able to keep my neuro issues to myself… to be able to have my secret be my secret and just appear to be like everyone else… instead i end up having this abysmal mess … where the only people who don’t seem to know WTF is up with me are my parents and my immediate family. We’ve always had this issue too. Where for them I’m normal. My mother had this “perfect pregnancy” and blah blah blah … and my father believes everything is all in peoples heads. try harder… work harder… you’re making it up.
That really messes with your head after enough years. Don’t tell me you’re not perfect, then what was perfect… then what’s being made up/faked/blah blah blah. So… as much as I talk about my disorders it’s hard for me to allow them too close to me around my family. I suppress, suppress, suppress…. but… when im not around them I just explode. Then I have this guilt of it not being a TRUE disability when I need accommodation’s for it.
I should have more to say … but i don’t… I have Caramel turtle cheesecake, some scifi, my Xamp and some stuff I can goof around with. I just have to decide what thing I want to goof around with first. I successfully mananaged to get nothing done at all …so… then its tomorrow
So… I’m officially some kind of a blogger! I don’t really know what I think about that yet, but I think I can get used to the idea of it. I’m…um…
A long time ago when I started this journal it was supposed to be just a way for me to get out how I was feeling. It was before I was ready to confront the fact that I’m sick. And I’m not getting better. And that I have to live with this for the rest of my life. Yeah, I know it could be worse. Just that really make it any better? Or does it make it worse? That’s a question I ask myself a lot when I’m sitting here thinking that everything I do I only do to get attention.
Attention is one of those funny things. I think about the idea wanting attention as something that I would rather have for being normal. Thinking that you know your face is contorting, or your hips are popping out, or your hands are locked up curled into each other and look like lobster claws… Not exactly something I want attention for. But as I get it, and there’s nothing I can really do about it. Other than take drugs, be patient, and learn to live with who I am.
I feel like there should be some kind like gigantic revelation inserted here. Like I have this great understanding of myself or of others. And really I’m just as clueless now as I was back when I got sick in the first place. That’s funny, Isn’t it?
~*~
So, I’ve been out of work because of this autoimmune neuro-biological disorder that I got blessed with. I found out that the claim.approved so at least I’m eventually going the it paid for it but it really doesn’t help the frustration that I’m going through about this! I sit here by myself inking of all the things I want to do and that I have to do, and that need to get finished and I don’t want to do any of them. Because all I do is twitch, and jerk, and shake, and shutter, and I could just keep going from there. But I realize that a lot of the stuff that I do of course I have no control over! Of course there’s nothing I can do other than take my drugs on time. But it doesn’t mean that I can’t question every decision that I make. Question everything that I do, to find this answer that I know am looking for that just isn’t out there. I just don’t know sometimes.
~*~
Oh, I remember what I wanted to say now!! um, I was invited to be part of the book on Tourette’s. It’s called a Day in the life of Tourette Syndrome it actually turned out pretty good. I never really had someone want me to be in their book before for my life experiences. Now my mom and everybody else’s on me to try and write my own book. They think I have so much to say I’m not really sure. So, my stream of consciousness is here trying to figure out if maybe that would be a good thing or if because it wasn’t my idea that I’m going to not want to do it. Or finish it. ha ha ha
Well that’s all for now for me, kind of on else to say anyway my tics are getting pretty bad. Amazing how much medication it can take for one person to hold still for a whopping 15 min.
I love this song… But, I love Art too… and the band… Maybe I'll get some more sleep tonight… or something.. these stupid drugs make me feel sick but I know I need them. I really got to get my shit together tonight… and maybe get some sleep before the sun comes back up and I'll be up forever then.
Everclear
Santa Ana Wind
Invisable Stars
We come from the sun, we are lost out in the cold
We run for the the light is the only way we know
Wanna find a better sun, I wanna find a better shine
Wanna find a better world, I wanna find me a better life
Wanna find a place living inside all the violence and the rage
Of the santa ana wind on a beautiful day.
It is the simple things that I love about this place
Sunshine and mexican food on Christmas day
The noise from the city is the only way I can fall asleep
I think I needed to leave to realize that this is home
this is where I'm suppose to be.
I can almost see the future
I can almost see the blue sky in the middle of the day
even though all hell is coming down around me now
my Sana Ana wind, made the clouds all go away.
Confessions of a Girl 