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Doctor's appointment tomorrow. Caught a cold today - well, the other day, but it showed up today. Had been outside trying to make snow into ice to sculpt with heat gun [ oh the things I do while delirious whee ], didn't realize that I was shivering, came in to feeling like I've been hit with a shovel. Significant other had a cold, I was making chicken soup and such the day before, so I mean, it makes sense that I got it too, but had thought somehow my body would be all "omg, +2 resistance due to current battle of stomach flu!" but no dice. teh sigh.
I didn't get a good photo of the eclipse - which bums me out, in terms of having been in college for photography for how long? Still can't manage to get an image. Tripod is really hard to use with hands being stiff/achy, as well as not being able to tilt the tripod-head enough to get the moon in the shot without extending the center riser all the way [incredibly unstable/tippy in the wind]. And then huge cloud-cover blew in.
Stayed out lying on snow for a bit, trying to be patient [and balance camera/lens on elbows for stability] and hoping the clouds would move, but after half an hour, was too cold and stiff to be able to trigger shutter, so came inside. I had lots of warm clothes on, was just bitter cold out -- I didn't get a chill like I did this afternoon, was mostly just discouraged, as well as recognizing that I wasn't going to be able to get the shot, and that I should get in the house to avoid throwing pneumonia on top of whatever is up with my digestive system.
I'm kind of freaked out a bit about college - I hadn't realized that reading week is next week. Half the semester eek gonk I've got a lot of work to catch-up -- and I don't know if all of my instructors [one in particular] are going to be willing to be understanding that I really have not been well or capable of getting the work done, let alone getting to class or coordinating shoots with models, regardless of doctor's note. It bums me out -- I really love my program, and I love my classes. As well, money sweatdrop
But! On good note, I randomly found a notice in newspaper about a seminar this weekend about Canada Disability Savings Act -- intended to allow long-term savings plans / trusts to be established to ensure future financial stability.
This is a very good thing -- I have been fighting to get approved for disability [ODSP] in order to be able to cover cost of living, and live in a healthier environment [emotional, as well as food allergens, and most importantly in terms of how much stress impacts on narcolepsy - self-acceptance and adaptation to how I am without having family members trying to protect me - or having expectations of how I was before, what I used to be capable of].
A major problem has been that I have a Canada Savings Bond, which is physically locked in my parents' safe, and due to having the bond, I am considered to have assets in excess of what is allowed. I was refused an interview for assessment, the case worker telling me I had to dispose of the assets before I could be considered for beginning the process of applying -- which can take anywhere from 3 months [in extremely rare cases, the only people I have known who have gotten approved within 3 months could afford to hire an advocate with experience in working with ODSP, as there are 800 regulations that are not consistently applied even between case workers in the same district, let alone the province] to 3 years.
Taking an ax to my parents' safe - likely for them to call cops on me and land me in a psych ward for a while - in order to be able to afford living expenses [or spend it on equipment -- or a much needed retreat to de-stress, even just a bus ticket to somewhere in the wilderness to just let myself think in solitude for a few weeks] - and then potentially not be approved, or told that the way that I 'disposed of the assets' was not appropriate, and then have no way of continuing to support myself while trying to scramble to get approved for disability -- well, the past while has been hell.
I've been bouncing between my parents' house - they mean well [I think, they say they do, and I believe them - but I also realize the number of times they have ended up doing more harm than good in the past, and half-truths and distortions 'for my own good'], but it is incredibly stressful for me, let alone the noise-level, to spending a night here and there with a few friends, but they are not able to take me in, for a variety of reasons - and I would worry in future about the potential for them to kick me out if they wanted to, even if they were able to [being back in the situation of feeling trapped, trying not to upset the power balance, and the stress of it making me ill].
I realize that other people will probably tell me to stfu, that I should be grateful for having a roof over my head, food to eat [even the meals are dominated by my food allergens, which makes me even more muddled and sleepy and stuck]. I realize that I probably sound incredibly ungrateful, I have had an ex tell me that I'm just spoiled and lazy, after he got frustrated with me nodding off in the middle of conversations too many times.
The biggest thing with narcolepsy is not the obvious symptoms of excessive daytime sleepiness and cataplexy - but the impact of sleep deprivation on the mind.
While I can sleep for a few days straight, stumbling to the washroom or fridge in a twilight state, I do not hit deep restful, restorative sleep -- I am in REM for the majority of the time, with scattered light sleep.
This would seem like a good thing, in terms of the various theories of REM being needed for memory processing, dealing with emotions, etc -- but what I have experienced is profound difficulties with short-term memory [a gap of a few days], and difficulty in regulating emotional responses -- in short, think of how you would feel if you had been up for a week straight: over-emotional, over-sensitive, impulsive, and exhausted. That is my life, and it has gotten progressively worse since I started noticing it developing around 7 years ago, and was diagnosed about 5 years ago. Medication wise - have not found a combination that works consistently - hormonal cycle affects my day-to-day, some days my medications seem to work, other days they do not. Kind of like the rest of my body - some days my digestive system works, other days it does not.
I forgot where I was going with this.
It is really frustrating at times - as I want to be able to do something with my life. I can be incredibly focused when I manage to hit a brain-space of functioning -- or incredibly flighty and distracted, tangent railroad tracks and pop-up messages of confusion making it difficult to carry on a conversation with anyone - I go upstairs to the kitchen and have no idea what I was looking for.
Oooh, okay, now I remember. Anyway, the biggest thing with narcolepsy is not the obvious falling asleep anywhere being potential for endangering self physically or monetarily [ people like to filch things form pockets on buses sad ], but the psychological ramifications of vulnerability - and how easy it can be to confuse, manipulate - my parents have even admitted to distorting things, when they thought it might be easier to get me to do what they wanted at that moment. It all builds up -- complex foggy webs of not being able to follow a thought to its origin, half-truths and half-lies distorting what actually exists, --- and of course, the underlying self-analysis of questioning whether I am sane, as for the longest time, no one who met them could understand why I was an emotional wreck from dealing with my parents. Only in the past two years have I met people [in person - as alas, as much as I champion the Internet and its communication possibilities, it is severely held back when connectivity issues arise] who have understood the gist of what I was trying to explain, and been able to grasp the issues, rather than staring at me blankly or getting mad at me for not being overjoyed that I have a bed.
Anyway. That there is a possible solution to sorting out being able to be independent on the horizon, makes me happier. I don't know when of course, but its more tangible than blind hope that somehow I would figure things out eventually, without having any clue whatsoever how I would be able to [aside from the half-plan of having to steal my own bond in order to live on my own -- my parents decided to tell me last week, in the midst of my fever flu, to tell me that I can just cash my bond and 'blow it on whatever you want' -- great, rather than allowing me to use it responsibly to establish a stable living situation when I was less stressed out, tell me when I'm sick and delirious that I can spend it on anything -- a state where anything shiny is fascinating. It pisses me off, a lot, that they think this is fine - the money would be gone, as I don't have the consistent moment-to-moment thought required to sit down and make a financial plan for myself --- it took a lot of energy and effort to be able to figure out and coordinate what letters of rosaleendhu's stash would be traded for my afk and nitemare scarf, for toward getting her mini angel wings. Distract-ability is bad, tabbed browsing is eating my brain - and that I don't have a 'me space' - somewhere that is mine, that others do not intrude upon -- having a lock on my door here at my parents is not allowed, and a closed door means nothing to them. Wedging stuff in front of door results in being yelled at -- I'm nearly 24, this is insane.
*breathes*
I will get out. I will move forward. Starting with doctor's appointment tomorrow, to try to get my body getting some nutrients out of food, and absorbing medications on a more regular basis, rather than this hit-and-miss once every few days of the Dexedrine rendering me a spastic twitch ball of agitated energy -- and other days it having no effect at all. And why some days I have next to no linguistic abilities, as it is frightening when I don't know words anymore, only shapes and movements, but not having a way to conceptualize them to others.
I'm not sure how many times I have to tell my doctors the same things, trying different ways of saying the same message, before they will understand what it is that I am trying to say, and look into the issues for me but I do keep trying - worried that with my stomach, it won't be before I end up in the hospital with sepsis due to blockage. I don't want it to get to that -- as my immune system has never been great, and I want to live as long as I can - rather than collapsing and breaking down sooner and sooner.
 amalyn · Thu Feb 21, 2008 @ 06:13am · 0 Comments |
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