I may have found the perfect Narcoleptic career: mattress store model! You just fall asleep in the front window, and the people walking by think the mattress you're on will help them sleep. Warning: May Be Mistaken For Mannikin Except for Snoring. XD If only someone would PAY me to sleep...
Well, I was at a mattress store yesterday, and let me tell you, I have never had that much trouble staying vertical in a store before. Just sitting on the cushy new mattresses made me too comfortable to stay awake. My husband was highly amused that he had to continuously poke me every two minutes when it was time to test a different one. It didn't help that it was cloudy outside, approaching sunset, and that I was pretty tired. I'm hoping it's a good sign anyway, that when our new mattress comes I might sleep better on it than I do on our two old-ish twin mattresses on the floor. It may come tonight, which means I could immediately at it to my various sleep experiments of the moment.
I hope it works; I need all the help I can get this time of year...
Showing posts with label job. Show all posts
Showing posts with label job. Show all posts
Monday, November 7, 2011
Friday, May 6, 2011
Disability Daily Activities Worksheet- My Answers
As mentioned in my last post, I've decided to take the long road of applying for disability in order to get insurance and hopefully a small amount of income. I'm still researching the process with my mom's help, so don't have a lot to tell you about it yet, but we found a worksheet that I've filled out explaining my condition. The form itself is copywritten, so I'm just going to copy and paste my answers to the questions to avoid getting in trouble.
So, here's more about my inability to work due to my severe narcolepsy... hopefully it helps someone to relate or understand. If you want the actual form, it's from http://www.disabilityfacts.com .
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1. TYPICAL MONTH. Please state how many good, fair, and bad days you have each month. (Consider a month to be 30 continuous days.)
a. Good Days -- days when you do well and complete all living and home care activities.
Total good days a month: 1 or 2
b. Fair Days -- days when you function with serious difficulty and fail to complete some living and home care activities. Total fair days in a month: about 21
c. Bad Days -- days when you function very poorly and fail to complete most living and home care activities. Total bad days a month: 4 or 5
d. In your own words please describe how the bad days and fair days are worse than the good ones.
On a good day, I can be mentally focused on productive activities for much of the day as long as I spend a lot of the day lying down. I will need to take a nap in the middle of the day for ten or twenty minutes and caffeinated tea might be required to keep me going. On fair days, that is, most of the time, I can do maybe one hour of activity before I need to lie down and take a break, and by the afternoon I have to stop all activity for the rest of the day as I’ve run out of energy. On a bad day, walking to another room exhausts me and I can’t do anything besides rest. If I try to push past and do things anyway, I end up bungling them up and needing to spend the entirety of the next day recovering.
e. Are there days when you don't go out because of your health? If yes, how many days a month does your health keep you in?
I stay in most of the time as my partner works and I can’t drive (I choose not to drive a car because I know I’m not awake enough to be a safe driver). In a typical month, I may have the energy to take my dogs on a short walk maybe 5 of the days if I’m lucky. Otherwise I only leave with my partner to run errands, during which I have trouble holding conversations without falling asleep and often leave the thinking and shopping up to J. Without my spouse, I would not feel safe leaving the house due to lack of alertness.
f. Compared with a year ago, are you functioning: Better? Worse? About the same?
I’ve been steadily getting worse for the past four years, after medication stopped working for me, even though I remained on it until a year ago when the side effects made it impossible for me to keep taking it.
2A. Do you have serious difficulty taking care of any personal needs, including the following, due to your medical condition?
Bathing, Shaving, Hair care, Dressing, Eating, Using the toilet, Getting to the toilet
I can manage these fine as long as I pace myself and only do one thing at a time.
Using stairs
Stairs have always been exhausting for me and I’ve learned to avoid them as much as possible. Going up or down just one flight makes me too tired to stand or walk much when I get to the other side. If I am forced to live in a house with stairs (which happens when visiting relatives for short or long term) I end up trapped on one floor, mustering the energy to go up or down only when in dire need (like when I get really hungry or need to go to bed).
Holding onto objects
I can do this fine when feeling my most awake, but the more tired or sleepy I am, the more I drop things that I pick up or knock things over while trying to reach for something. My hand-eye coordination is terrible.
Understanding/following instructions
I have a hard time with this; I usually have to ask for repeats, and sometimes I still forget before I can accomplish the task. Conversations of any kind are frustrating, exhausting and nerve-wracking for me, especially with people who I don’t know well or who don’t know I have narcolepsy.
Making decisions
When given several days or weeks, I’m excellent at making decisions, but any faster than that I panic because my mind works too slowly. I also easily overlook important factors in the decision and usually need to be reminded of them repeatedly. Even seemingly small or unimportant decisions are hard for me to make quickly; they still jamb my brain.
Doing things on time
Having deadlines is difficult for me because I never know when I’m going to have a bad day, so despite my best efforts, when I was in school I would often need extensions on projects. I have had enough trouble completing the work and keeping up on assignments that I have had to drop classes before, and this is one reason I don’t take any classes anymore.
Finishing things
I always finish what I start. The only thing is that it may take twice as long as someone else, sometimes months or years, because I have to pace myself and do a little bit at a time.
Using the telephone
I hate using the phone and my spouse does all of my “business” calls for me. I tend to fall asleep and have trouble keeping up with whomever I’m talking to, or I forget why I was calling in the first place, or I don’t remember a key piece of information. I remember visual information way better than audio, which tends to go in one ear and out the other, even when I’m concentrating. I only make casual phone calls, because my friends and family know about my condition and I don’t feel ashamed or embarrassed because they understand why I fall asleep or stop making sense while talking to them.
Personal business/finance
I can do any of this that doesn’t involve talking to people as long as I choose my more alert moments to do things like pay bills or check online accounts. Something that takes longer, like taxes, really takes my energy and I have to hand it over to my spouse when I get too tired to continue.
Caring for others
My spouse and I have four pets who I care for, though I often need help from J in order to get all of the chores done, and on bad days, he has to do everything and I can only provide companionship for them.
Visiting people, Shopping
During these activities I almost always end up napping (no matter how short an errand), whether leaning on a shopping cart or on my spouse on a friend’s couch. Whenever we shop, we get in and out quickly in order to get me back to where I can lie down. I don’t enjoy shopping with other people because I get tired from standing up and it loses its fun long before my friends get tired. When visiting people, I prefer sitting and talking informally or watching a movie because walking around is too taxing to do for fun.
Getting places
As stated earlier, I don’t drive or feel comfortable leaving my house without my spouse’s assistance. If I lived near a train or subway system I think I could handle that, especially if accompanied, but I don’t currently.
Recreation, Hobbies
I draw cartoons and make nature-themed crafts, but this is another activity that I can do for an hour at the most before I need to lie down and not move for awhile. Otherwise I find myself falling asleep on my sketchbook and making simple mistakes in everything I attempt. Because of this and the other chores I need to do every day, I only get to draw a couple of times a week and often don’t do crafts more than two or three times a month. Even reading a book requires me to be awake enough to resist falling asleep while I’m trying to absorb information and I have to limit my time doing that as well.
Group activities, like church or clubs
I avoid groups because it is hard for me to keep track of one or two people talking, much less more people than that. I have no intention of trying to meet people in this way.
Other activities? Describe:
Driving
I used to drive despite my condition because at first, I didn’t understand how much harder it is for me than others, and then later it was the only option for me before I moved in with my spouse. I can and will drive in an emergency for a short distance, but I don’t feel comfortable in any traffic and am terrified of highways because I can’t make the split-second decisions necessary to stay safe. I lack depth perception because of my constantly sleepy state and therefore find it incredibly difficult to tell distance between myself and other cars. This makes parking nearly impossible because I can’t tell how much space is between parked cars or if I have room to turn into. I don’t feel safe driving at speeds over 25 mph. Additionally, driving takes so much concentration for me to avoid a collision that when I reach my destination I immediately fall asleep and am too exhausted to accomplish what I needed to get there to do.
2B. Do you prepare or serve meals? If so, what meals do you do?
I have Celiac disease and soy intolerance in addition to narcolepsy, and therefore must prepare all of my meals myself or have them prepared by someone who knows how to avoid ingredients that make me ill.
(a) Breakfast. Describe what you do. How many days a month? Every day
I heat up leftovers or make gluten-free toast; if I’m feeling good that day, I might scramble some eggs. I usually try to keep breakfast easy as I’m not fully awake until after I’ve eaten and had caffeinated tea.
(b) Lunch. Describe what you do. How many days a month? Every day
I usually cook a fresh meal for lunch, as that’s my main meal, but on bad days I heat up a safe frozen dinner because I don’t have the energy to stand at the stove for long enough to cook. When I do cook, I usually make something with pasta or rice and vegetables. I’m careful to eat as much fresh food as I can because otherwise I end up feeling even more run down than I would anyway.
(c) Dinner. Describe what you do. How many days a month? Every day
I usually eat leftovers, snack food or something easy and frozen for dinner because I’m not usually hungry enough to cook anything and by the evening I’m almost always out of energy.
(d) Does anyone help with meals?
My spouse helps me cook (or rather, cooks for me) if I’m having a bad day and he is home. He also helps by mostly feeding himself so that I don’t need to worry about always cooking for him.
3. CARING FOR THE PLACE WHERE YOU LIVE.
a. Describe the home care activities you do regularly.
I vacuum, do laundry, wash dishes, keep the house organized, clean the litterbox for the cats and clean up stains and animal messes. I also keep our animals (two dogs and two cats) fed, watered and groomed. I spread these chores out pretty evenly over a week or two in order to get to them all (except feeding the animals, of course!).
b. Describe the home care activities which other people do around the place you live.
My spouse carries laundry for me, especially when stairs are involved, takes the dogs outside for their bathroom breaks, takes care of the yard, fixes things around the house and does anything that takes more energy than I have at the moment it needs to get done. He often picks up the slack when I’m too tired to clean something, feed the dogs or do other chores.
c. Describe any home care activities which need to be done, but do not get done because of your health.
I rarely get around to sweeping the floors or cleaning up after the dogs outside. I used to dust all the time but I never have the energy anymore. Laundry or dishes often build up quite a bit before I get to them.
d. Did you do things in the past that you don't do now due to your health?
I used to walk the dogs at least once a day myself, sometimes twice, but now I rarely am able to even take them around the block and leave their exercise to my spouse. Also, I used to be the only one in charge of feeding them twice a day; now I split that duty with my spouse or turn it over to him entirely.
D. WORK RELATED ACTIVITIES.
Do you have serious difficulty doing any of the following on a sustained basis?
Sitting, Standing, Walking, Crawling
I have trouble remaining awake while sitting and holding my upper body upright for more than maybe ten to fifteen minutes. When standing, I need to lean on something and even then I can only stand comfortably for a few minutes before I need to either move around or sit down. I have fallen asleep standing up, leaning my weight on the nearest wall before. Walking slowly, I can keep going for about ten minutes before I need to sit down. The longest I can stay on my feet at one time is probably half an hour, and that is with significant discomfort and concentrated effort. Crawling, as it requires my whole body, is more exhausting- I even avoid crawling across my bed if I can help it.
Lifting, Carrying, Crouching/squatting, Pushing/pulling with hands/legs, Reaching up, out, down
I can’t physically lift more than a couple of pounds with each hand. Using both arms, I can barely carry my 15 pound dachshund for a few minutes, and that makes me exhausted. I can’t lift much of anything above my head and am easily thrown off balance. I can crouch with one or both hands propping me up, but without them I fall forward. As for pushing and pulling, heavy doors require my full body to open. I have considerable force if I push with both legs. Reaching with my arms, especially down, often unbalances me and causes me to feel like I’m about to fall.
Working productively all day, every day, year round
This has never been possible for me, though I have tried to work part-time. All five of my attempts either ended at a set time, thus saving me from being fired, or I had to quit because I felt I couldn’t complete the tasks assigned me. Even something as simple as making photocopies was extremely stressful for me and I got taken off of that duty because I kept messing things up and getting confused. I tried to tutor English once, but I had to quit before I had been at it very long because I kept falling asleep in the middle of sessions and it was a struggle to keep my clients from realizing this. When sitting, I fall asleep; when standing, I get too fatigued to function after a short period of time. I’m a mess on the phone because of my memory problems and it’s difficult for me to keep track of anything in general. I enjoy cleaning, but it’s so physically demanding that I can’t do it for more than ten minutes at a time, and then it takes me an hour to recover. I can’t focus or concentrate in a reliable way and communicating with other people is frightening and stressful for me. I’ve looked into dog training, working from home and creating art to sell, but I can’t escape the fact that I simply don’t have the energy to sustain any activity long enough to make money doing it or meet any kind of schedule or deadline.
Functioning in bad environments (for example, risky places; environments of heat, cold, or humidity; those with pollutants, fumes, drafts, or irritants like noise or vibration)
I can’t function in these environments because I easily become ill, any distractions to my already limited concentration are disastrous (including any feelings of physical discomfort such as heat and cold), and I’m not alert enough to effectively deal with danger.
Other limitations? Describe:
Because of my gluten and soy intolerance, I find travel difficult as it is hard to find food I can safely eat that is made by anyone other than myself. I must carry safe food with me at all times if I don’t have a kitchen easily available, or locate one of three safe restaurants.
E. Anything else?
Because of all of the above mentioned limitations, I suffer from considerable anxiety when confronted with new situations or new people.
So, here's more about my inability to work due to my severe narcolepsy... hopefully it helps someone to relate or understand. If you want the actual form, it's from http://www.disabilityfacts.com .
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1. TYPICAL MONTH. Please state how many good, fair, and bad days you have each month. (Consider a month to be 30 continuous days.)
a. Good Days -- days when you do well and complete all living and home care activities.
Total good days a month: 1 or 2
b. Fair Days -- days when you function with serious difficulty and fail to complete some living and home care activities. Total fair days in a month: about 21
c. Bad Days -- days when you function very poorly and fail to complete most living and home care activities. Total bad days a month: 4 or 5
d. In your own words please describe how the bad days and fair days are worse than the good ones.
On a good day, I can be mentally focused on productive activities for much of the day as long as I spend a lot of the day lying down. I will need to take a nap in the middle of the day for ten or twenty minutes and caffeinated tea might be required to keep me going. On fair days, that is, most of the time, I can do maybe one hour of activity before I need to lie down and take a break, and by the afternoon I have to stop all activity for the rest of the day as I’ve run out of energy. On a bad day, walking to another room exhausts me and I can’t do anything besides rest. If I try to push past and do things anyway, I end up bungling them up and needing to spend the entirety of the next day recovering.
e. Are there days when you don't go out because of your health? If yes, how many days a month does your health keep you in?
I stay in most of the time as my partner works and I can’t drive (I choose not to drive a car because I know I’m not awake enough to be a safe driver). In a typical month, I may have the energy to take my dogs on a short walk maybe 5 of the days if I’m lucky. Otherwise I only leave with my partner to run errands, during which I have trouble holding conversations without falling asleep and often leave the thinking and shopping up to J. Without my spouse, I would not feel safe leaving the house due to lack of alertness.
f. Compared with a year ago, are you functioning: Better? Worse? About the same?
I’ve been steadily getting worse for the past four years, after medication stopped working for me, even though I remained on it until a year ago when the side effects made it impossible for me to keep taking it.
2A. Do you have serious difficulty taking care of any personal needs, including the following, due to your medical condition?
Bathing, Shaving, Hair care, Dressing, Eating, Using the toilet, Getting to the toilet
I can manage these fine as long as I pace myself and only do one thing at a time.
Using stairs
Stairs have always been exhausting for me and I’ve learned to avoid them as much as possible. Going up or down just one flight makes me too tired to stand or walk much when I get to the other side. If I am forced to live in a house with stairs (which happens when visiting relatives for short or long term) I end up trapped on one floor, mustering the energy to go up or down only when in dire need (like when I get really hungry or need to go to bed).
Holding onto objects
I can do this fine when feeling my most awake, but the more tired or sleepy I am, the more I drop things that I pick up or knock things over while trying to reach for something. My hand-eye coordination is terrible.
Understanding/following instructions
I have a hard time with this; I usually have to ask for repeats, and sometimes I still forget before I can accomplish the task. Conversations of any kind are frustrating, exhausting and nerve-wracking for me, especially with people who I don’t know well or who don’t know I have narcolepsy.
Making decisions
When given several days or weeks, I’m excellent at making decisions, but any faster than that I panic because my mind works too slowly. I also easily overlook important factors in the decision and usually need to be reminded of them repeatedly. Even seemingly small or unimportant decisions are hard for me to make quickly; they still jamb my brain.
Doing things on time
Having deadlines is difficult for me because I never know when I’m going to have a bad day, so despite my best efforts, when I was in school I would often need extensions on projects. I have had enough trouble completing the work and keeping up on assignments that I have had to drop classes before, and this is one reason I don’t take any classes anymore.
Finishing things
I always finish what I start. The only thing is that it may take twice as long as someone else, sometimes months or years, because I have to pace myself and do a little bit at a time.
Using the telephone
I hate using the phone and my spouse does all of my “business” calls for me. I tend to fall asleep and have trouble keeping up with whomever I’m talking to, or I forget why I was calling in the first place, or I don’t remember a key piece of information. I remember visual information way better than audio, which tends to go in one ear and out the other, even when I’m concentrating. I only make casual phone calls, because my friends and family know about my condition and I don’t feel ashamed or embarrassed because they understand why I fall asleep or stop making sense while talking to them.
Personal business/finance
I can do any of this that doesn’t involve talking to people as long as I choose my more alert moments to do things like pay bills or check online accounts. Something that takes longer, like taxes, really takes my energy and I have to hand it over to my spouse when I get too tired to continue.
Caring for others
My spouse and I have four pets who I care for, though I often need help from J in order to get all of the chores done, and on bad days, he has to do everything and I can only provide companionship for them.
Visiting people, Shopping
During these activities I almost always end up napping (no matter how short an errand), whether leaning on a shopping cart or on my spouse on a friend’s couch. Whenever we shop, we get in and out quickly in order to get me back to where I can lie down. I don’t enjoy shopping with other people because I get tired from standing up and it loses its fun long before my friends get tired. When visiting people, I prefer sitting and talking informally or watching a movie because walking around is too taxing to do for fun.
Getting places
As stated earlier, I don’t drive or feel comfortable leaving my house without my spouse’s assistance. If I lived near a train or subway system I think I could handle that, especially if accompanied, but I don’t currently.
Recreation, Hobbies
I draw cartoons and make nature-themed crafts, but this is another activity that I can do for an hour at the most before I need to lie down and not move for awhile. Otherwise I find myself falling asleep on my sketchbook and making simple mistakes in everything I attempt. Because of this and the other chores I need to do every day, I only get to draw a couple of times a week and often don’t do crafts more than two or three times a month. Even reading a book requires me to be awake enough to resist falling asleep while I’m trying to absorb information and I have to limit my time doing that as well.
Group activities, like church or clubs
I avoid groups because it is hard for me to keep track of one or two people talking, much less more people than that. I have no intention of trying to meet people in this way.
Other activities? Describe:
Driving
I used to drive despite my condition because at first, I didn’t understand how much harder it is for me than others, and then later it was the only option for me before I moved in with my spouse. I can and will drive in an emergency for a short distance, but I don’t feel comfortable in any traffic and am terrified of highways because I can’t make the split-second decisions necessary to stay safe. I lack depth perception because of my constantly sleepy state and therefore find it incredibly difficult to tell distance between myself and other cars. This makes parking nearly impossible because I can’t tell how much space is between parked cars or if I have room to turn into. I don’t feel safe driving at speeds over 25 mph. Additionally, driving takes so much concentration for me to avoid a collision that when I reach my destination I immediately fall asleep and am too exhausted to accomplish what I needed to get there to do.
2B. Do you prepare or serve meals? If so, what meals do you do?
I have Celiac disease and soy intolerance in addition to narcolepsy, and therefore must prepare all of my meals myself or have them prepared by someone who knows how to avoid ingredients that make me ill.
(a) Breakfast. Describe what you do. How many days a month? Every day
I heat up leftovers or make gluten-free toast; if I’m feeling good that day, I might scramble some eggs. I usually try to keep breakfast easy as I’m not fully awake until after I’ve eaten and had caffeinated tea.
(b) Lunch. Describe what you do. How many days a month? Every day
I usually cook a fresh meal for lunch, as that’s my main meal, but on bad days I heat up a safe frozen dinner because I don’t have the energy to stand at the stove for long enough to cook. When I do cook, I usually make something with pasta or rice and vegetables. I’m careful to eat as much fresh food as I can because otherwise I end up feeling even more run down than I would anyway.
(c) Dinner. Describe what you do. How many days a month? Every day
I usually eat leftovers, snack food or something easy and frozen for dinner because I’m not usually hungry enough to cook anything and by the evening I’m almost always out of energy.
(d) Does anyone help with meals?
My spouse helps me cook (or rather, cooks for me) if I’m having a bad day and he is home. He also helps by mostly feeding himself so that I don’t need to worry about always cooking for him.
3. CARING FOR THE PLACE WHERE YOU LIVE.
a. Describe the home care activities you do regularly.
I vacuum, do laundry, wash dishes, keep the house organized, clean the litterbox for the cats and clean up stains and animal messes. I also keep our animals (two dogs and two cats) fed, watered and groomed. I spread these chores out pretty evenly over a week or two in order to get to them all (except feeding the animals, of course!).
b. Describe the home care activities which other people do around the place you live.
My spouse carries laundry for me, especially when stairs are involved, takes the dogs outside for their bathroom breaks, takes care of the yard, fixes things around the house and does anything that takes more energy than I have at the moment it needs to get done. He often picks up the slack when I’m too tired to clean something, feed the dogs or do other chores.
c. Describe any home care activities which need to be done, but do not get done because of your health.
I rarely get around to sweeping the floors or cleaning up after the dogs outside. I used to dust all the time but I never have the energy anymore. Laundry or dishes often build up quite a bit before I get to them.
d. Did you do things in the past that you don't do now due to your health?
I used to walk the dogs at least once a day myself, sometimes twice, but now I rarely am able to even take them around the block and leave their exercise to my spouse. Also, I used to be the only one in charge of feeding them twice a day; now I split that duty with my spouse or turn it over to him entirely.
D. WORK RELATED ACTIVITIES.
Do you have serious difficulty doing any of the following on a sustained basis?
Sitting, Standing, Walking, Crawling
I have trouble remaining awake while sitting and holding my upper body upright for more than maybe ten to fifteen minutes. When standing, I need to lean on something and even then I can only stand comfortably for a few minutes before I need to either move around or sit down. I have fallen asleep standing up, leaning my weight on the nearest wall before. Walking slowly, I can keep going for about ten minutes before I need to sit down. The longest I can stay on my feet at one time is probably half an hour, and that is with significant discomfort and concentrated effort. Crawling, as it requires my whole body, is more exhausting- I even avoid crawling across my bed if I can help it.
Lifting, Carrying, Crouching/squatting, Pushing/pulling with hands/legs, Reaching up, out, down
I can’t physically lift more than a couple of pounds with each hand. Using both arms, I can barely carry my 15 pound dachshund for a few minutes, and that makes me exhausted. I can’t lift much of anything above my head and am easily thrown off balance. I can crouch with one or both hands propping me up, but without them I fall forward. As for pushing and pulling, heavy doors require my full body to open. I have considerable force if I push with both legs. Reaching with my arms, especially down, often unbalances me and causes me to feel like I’m about to fall.
Working productively all day, every day, year round
This has never been possible for me, though I have tried to work part-time. All five of my attempts either ended at a set time, thus saving me from being fired, or I had to quit because I felt I couldn’t complete the tasks assigned me. Even something as simple as making photocopies was extremely stressful for me and I got taken off of that duty because I kept messing things up and getting confused. I tried to tutor English once, but I had to quit before I had been at it very long because I kept falling asleep in the middle of sessions and it was a struggle to keep my clients from realizing this. When sitting, I fall asleep; when standing, I get too fatigued to function after a short period of time. I’m a mess on the phone because of my memory problems and it’s difficult for me to keep track of anything in general. I enjoy cleaning, but it’s so physically demanding that I can’t do it for more than ten minutes at a time, and then it takes me an hour to recover. I can’t focus or concentrate in a reliable way and communicating with other people is frightening and stressful for me. I’ve looked into dog training, working from home and creating art to sell, but I can’t escape the fact that I simply don’t have the energy to sustain any activity long enough to make money doing it or meet any kind of schedule or deadline.
Functioning in bad environments (for example, risky places; environments of heat, cold, or humidity; those with pollutants, fumes, drafts, or irritants like noise or vibration)
I can’t function in these environments because I easily become ill, any distractions to my already limited concentration are disastrous (including any feelings of physical discomfort such as heat and cold), and I’m not alert enough to effectively deal with danger.
Other limitations? Describe:
Because of my gluten and soy intolerance, I find travel difficult as it is hard to find food I can safely eat that is made by anyone other than myself. I must carry safe food with me at all times if I don’t have a kitchen easily available, or locate one of three safe restaurants.
E. Anything else?
Because of all of the above mentioned limitations, I suffer from considerable anxiety when confronted with new situations or new people.
Wednesday, December 15, 2010
RV Living
Want a new way to save energy? Try downsizing your floor space. :D
Before we relocated for my girlfriend's job in August, we were living at her parents' place, a lovely two story house with a pretty large upstairs that we had completely to ourselves. When I moved in, I put myself in charge of keeping the two large bedrooms, connecting bathroom, two walk-in closets, stairs and loft area clean. Being a genetic neat-freak who actually enjoys things like sweeping and dusting made this part of my life fun rather than a chore, so most of the time I didn't actually mind. That doesn't mean it wasn't a challenge however- we had two dogs and two cats upstairs with us, constantly shedding hair, plus my girlfriend who is like a tornado on the weekends. She likes to collect her things in what we refer to as "chaos piles", and anything within ten feet of one is in danger of getting sucked into the vortex, to disappear for days or weeks until I have time to go in and put things away. So while cleaning that place was fun, it wasn't easy, and sometimes it would get nasty if I was sick or busy or just plain tired for a couple of days in a row.
Then, in the span of a week, the whole situation changed. She interviewed and got an offer a week before the school year was going to start and we found ourselves scrambling, trying to find someplace to live in a state neither of us had ever even directly visited, in a small town with nothing posted online. We ended up borrowing the family RV and living at a campground for the first month while we looked for a place to rent via word of mouth. We took the dogs with us but had to leave the cats in the care of the in-laws for lack of space.
I have to admit I was skeptical of the whole RV thing at first. After all, the last experience I had had with an RV was camping on the beach with grandparents when I was little in a very cramped, old and only partially functional one (if I remember correctly, the shower didn't work at all). But this thing was pretty fancy, with a separate bedroom, a pretty nice little kitchen and comfortable furniture. And I came to appreciate the lack of space- I got so much more art and relaxing done, simply because I had hardly anything I was supposed to keep clean. Because of the close quarters I got to know my girlfriend's dog a lot better and we really developed a bond. The dogs also liked the campground because there was always so much to smell, and walks were positive challenges for both of them because of other dogs and children. I gained so much confidence walking them there. It was so easy to just go outside with only three stairs instead of a whole flight in my way.
It was pretty interesting to watch our neighbors come and go, even after just a night sometimes. I thought having so many people parked so close would be harrowing, but instead it was just fun to watch their interactions. Everyone was really relaxed for the most part- after all, they were on vacation- and just having a good time. There were a couple of boisterous weekends around Labor Day that were a bit much, but expected. Once I even saw an RV hotel. o.O I didn't even know those existed. It was like a bus and had a bus full of people inside it.
I also really liked having a ridiculously tiny kitchen. I didn't have to walk to get to anything, lol- you just reach up and there it is. And I loved the fact that we could easily open the place up- it was mostly windows- and we were practically outside. In August the weather was right up my alley, even though in September it got a tad chilly sometimes, but the RV's air conitioning and heating worked really well and quickly. Another advantage to small living spaces.
Even so, we were all getting ready for a change when the time came to move out. The weather was turning chilly and the campground was going to close for the year by the time we had arranged to rent our house. The dogs played victory fetch in our new large living room and celebrated having a yard all their own to claim. We humans were excited by the prospect of having the ability to actually fit a whole meal's worth of pots on the stove at once. A couple of months after we moved in, my in-laws came to visit and brought the cats with them, so our family was reunited. And I do like our house. Sometimes, though, I miss the RV (like when the entire house needs vacuuming XD), and I would live in one again without hesitation.
Before we relocated for my girlfriend's job in August, we were living at her parents' place, a lovely two story house with a pretty large upstairs that we had completely to ourselves. When I moved in, I put myself in charge of keeping the two large bedrooms, connecting bathroom, two walk-in closets, stairs and loft area clean. Being a genetic neat-freak who actually enjoys things like sweeping and dusting made this part of my life fun rather than a chore, so most of the time I didn't actually mind. That doesn't mean it wasn't a challenge however- we had two dogs and two cats upstairs with us, constantly shedding hair, plus my girlfriend who is like a tornado on the weekends. She likes to collect her things in what we refer to as "chaos piles", and anything within ten feet of one is in danger of getting sucked into the vortex, to disappear for days or weeks until I have time to go in and put things away. So while cleaning that place was fun, it wasn't easy, and sometimes it would get nasty if I was sick or busy or just plain tired for a couple of days in a row.
Then, in the span of a week, the whole situation changed. She interviewed and got an offer a week before the school year was going to start and we found ourselves scrambling, trying to find someplace to live in a state neither of us had ever even directly visited, in a small town with nothing posted online. We ended up borrowing the family RV and living at a campground for the first month while we looked for a place to rent via word of mouth. We took the dogs with us but had to leave the cats in the care of the in-laws for lack of space.
I have to admit I was skeptical of the whole RV thing at first. After all, the last experience I had had with an RV was camping on the beach with grandparents when I was little in a very cramped, old and only partially functional one (if I remember correctly, the shower didn't work at all). But this thing was pretty fancy, with a separate bedroom, a pretty nice little kitchen and comfortable furniture. And I came to appreciate the lack of space- I got so much more art and relaxing done, simply because I had hardly anything I was supposed to keep clean. Because of the close quarters I got to know my girlfriend's dog a lot better and we really developed a bond. The dogs also liked the campground because there was always so much to smell, and walks were positive challenges for both of them because of other dogs and children. I gained so much confidence walking them there. It was so easy to just go outside with only three stairs instead of a whole flight in my way.
It was pretty interesting to watch our neighbors come and go, even after just a night sometimes. I thought having so many people parked so close would be harrowing, but instead it was just fun to watch their interactions. Everyone was really relaxed for the most part- after all, they were on vacation- and just having a good time. There were a couple of boisterous weekends around Labor Day that were a bit much, but expected. Once I even saw an RV hotel. o.O I didn't even know those existed. It was like a bus and had a bus full of people inside it.
I also really liked having a ridiculously tiny kitchen. I didn't have to walk to get to anything, lol- you just reach up and there it is. And I loved the fact that we could easily open the place up- it was mostly windows- and we were practically outside. In August the weather was right up my alley, even though in September it got a tad chilly sometimes, but the RV's air conitioning and heating worked really well and quickly. Another advantage to small living spaces.
Even so, we were all getting ready for a change when the time came to move out. The weather was turning chilly and the campground was going to close for the year by the time we had arranged to rent our house. The dogs played victory fetch in our new large living room and celebrated having a yard all their own to claim. We humans were excited by the prospect of having the ability to actually fit a whole meal's worth of pots on the stove at once. A couple of months after we moved in, my in-laws came to visit and brought the cats with them, so our family was reunited. And I do like our house. Sometimes, though, I miss the RV (like when the entire house needs vacuuming XD), and I would live in one again without hesitation.
Tuesday, November 10, 2009
Going Domestic
It's finally time to reveal my latest life plan. To be honest, it surprises me a bit. But then again, life is surprising and it likes to change your path in ways you never expected. I suppose that's something I've been learning through my last eight attempts at planning the future, lol.
As you know if you've been reading about my life for some reason, my Narcolepsy has been really kicking my ass lately. For over a year I've been working on an Animation degree at the local art institute, but as my energy level has been plummeting the last couple of months I've been rethinking things. I dropped from four classes to three two quarters ago out of necessity and now I'm struggling to stay afloat with just the three (and they're easier). When I started this degree (my second bachelor's) a year ago, my intention was to use it to get a full time studio job because the field of animation is just such a good fit for me personality-wise. If I were going to work full time, that would be the job for me. And I've really enjoyed my classes, don't get me wrong. It's been a blast and I've learned a ton about a lot of art-related fields, as well as some useful practical skills. But things have changed. I've gone downhill far enough to really put full time work out of reach. For awhile I just assumed I would switch to trying to work part time eventually, but right now that, too, has become unrealistic. So there goes the main reason I was pursuing another degree.
Meanwhile, I'm starting to realize that taking these classes has begun to interfere with taking care of myself. While I'm still enjoying them, I've been really stressed out because I'm barely keeping up with the work. Having a class on a day tends to kill it- by the time I drive over there, try to concentrate for four hours and drive home, that's my entire day's worth of energy gone. I'm finding it difficult to keep things clean around the house or cook something other than a frozen dinner on those days. Most of my class days- three days a week- my dog doesn't get his second walk. And basically I'm tired of skimping on the important dog and health aspects of my life in order to finish an extra degree.
But there is the really good addition to my life right now, namely the fact that I'm dating my best friend in the world, who actually gets all of this stuff. We're planning to move in together over the summer, and her take on the situation was that as she's going to be busy and full-time employed with a steady job that's likely to always be in demand, she can support me financially. I could take care of the animals and the apartment and help her to stay organized (which she desperately needs help with), and run the errands and work on my art, and that will be my full-time job. I think this idea is brilliant because for once I feel like it's something I could actually physically manage, even with Narcolepsy breathing down my neck. It also aligns more closely with my own personal values than any hypothetical careers I've tried to come up with in the past. Taking care of her and our environment and pets sounds wonderful to me. And you know, if I start feeling better I can always add more. If my art becomes something good I could pursue that, maybe even make some money on the side, but I wouldn't be in the predicament of needing to produce it fast enough to support myself. Also, I can be on her health insurance, which solves that looming problem.
I'm anticipating some resistance from the parents on this latest occupation idea, however. I tried to feel my mom out on the idea of not finishing my Animation degree, and she has the opinion that if I'm not in school or working this means I'm going to be bored or unhappy. Now, this makes sense, because that's how she would feel without school or a job, which is why she's worked right through periods of her own bad health. But I think I'll be fine. I'm pretty zen. I can slow down and actually be happier that way.
I think my dad will be resistant just because he really likes making money, has a ton of energy, and has trouble seeing things from other points of view. I had a really good conversation with him last week about how my health is right now, so I'm hopeful he'll understand that aspect of it. But he's always had this image of successful career-woman me in his head that I've been bumping up against my entire life.
What I think is interesting about this situation is that if I had a serious boyfriend instead of a serious girlfriend no one would so much as blink- this is Texas after all. And if it was fifty years ago this novel, out-there idea of being my spouse's housewife would have been a given. But it is here and it is now, and this will be interesting.
As you know if you've been reading about my life for some reason, my Narcolepsy has been really kicking my ass lately. For over a year I've been working on an Animation degree at the local art institute, but as my energy level has been plummeting the last couple of months I've been rethinking things. I dropped from four classes to three two quarters ago out of necessity and now I'm struggling to stay afloat with just the three (and they're easier). When I started this degree (my second bachelor's) a year ago, my intention was to use it to get a full time studio job because the field of animation is just such a good fit for me personality-wise. If I were going to work full time, that would be the job for me. And I've really enjoyed my classes, don't get me wrong. It's been a blast and I've learned a ton about a lot of art-related fields, as well as some useful practical skills. But things have changed. I've gone downhill far enough to really put full time work out of reach. For awhile I just assumed I would switch to trying to work part time eventually, but right now that, too, has become unrealistic. So there goes the main reason I was pursuing another degree.
Meanwhile, I'm starting to realize that taking these classes has begun to interfere with taking care of myself. While I'm still enjoying them, I've been really stressed out because I'm barely keeping up with the work. Having a class on a day tends to kill it- by the time I drive over there, try to concentrate for four hours and drive home, that's my entire day's worth of energy gone. I'm finding it difficult to keep things clean around the house or cook something other than a frozen dinner on those days. Most of my class days- three days a week- my dog doesn't get his second walk. And basically I'm tired of skimping on the important dog and health aspects of my life in order to finish an extra degree.
But there is the really good addition to my life right now, namely the fact that I'm dating my best friend in the world, who actually gets all of this stuff. We're planning to move in together over the summer, and her take on the situation was that as she's going to be busy and full-time employed with a steady job that's likely to always be in demand, she can support me financially. I could take care of the animals and the apartment and help her to stay organized (which she desperately needs help with), and run the errands and work on my art, and that will be my full-time job. I think this idea is brilliant because for once I feel like it's something I could actually physically manage, even with Narcolepsy breathing down my neck. It also aligns more closely with my own personal values than any hypothetical careers I've tried to come up with in the past. Taking care of her and our environment and pets sounds wonderful to me. And you know, if I start feeling better I can always add more. If my art becomes something good I could pursue that, maybe even make some money on the side, but I wouldn't be in the predicament of needing to produce it fast enough to support myself. Also, I can be on her health insurance, which solves that looming problem.
I'm anticipating some resistance from the parents on this latest occupation idea, however. I tried to feel my mom out on the idea of not finishing my Animation degree, and she has the opinion that if I'm not in school or working this means I'm going to be bored or unhappy. Now, this makes sense, because that's how she would feel without school or a job, which is why she's worked right through periods of her own bad health. But I think I'll be fine. I'm pretty zen. I can slow down and actually be happier that way.
I think my dad will be resistant just because he really likes making money, has a ton of energy, and has trouble seeing things from other points of view. I had a really good conversation with him last week about how my health is right now, so I'm hopeful he'll understand that aspect of it. But he's always had this image of successful career-woman me in his head that I've been bumping up against my entire life.
What I think is interesting about this situation is that if I had a serious boyfriend instead of a serious girlfriend no one would so much as blink- this is Texas after all. And if it was fifty years ago this novel, out-there idea of being my spouse's housewife would have been a given. But it is here and it is now, and this will be interesting.
Monday, October 26, 2009
New Job Garage Art Frilly Reunion
Weird dreams this morning. o.O
In one dream I was working for this company that apparently helped people edit their papers. It was a kind of fancy looking office and we all had to wear suits. All the furniture was shiny polished hardwood. A client would come in and check in at this library desk, and then the receptionist would send them back to one of our editing cubicles.
It was apparently my first day on the job and my first ever client turned out to be an acquaintance from high school, only in the dream I thought I knew her from Japan. I was relieved to have someone I knew because that way I wouldn't have to be all formal and nervous. We talked for awhile and she gave me a research paper for grad school to edit. It wasn't that hard but I was starting to get sleepy sitting in my comfy armchair. I started to move around, finding excuses to stand up because I needed to wake up again. Unfortunately this strategy backfired and I got really tired and started having trouble pretending I was fine.
The next dream I had took place at my house except that it was still my senior year of college. Our garage was the Carleton ceramics studio, and if you went into the actual house it was nothing but twisting hallways with these framed bold graphic poster-sized drawings hanging neatly on both walls. Apparently I had just finished my senior comps project and was pulling it out to look at everything in the garage. The last person to be in there had left a slide projector and a lamp across the street in a park for some reason, and I was annoyed because it could have easily been stolen. I took both back into the garage but left the garage door open because even though it was foggy outside there would be better light in there that way. I had laid out all of my work on a table and was looking at it. It didn't look great, because the glaze had come out kind of weird and not how I'd planned, but I figured it would work anyway. I had lots of different sizes of dinosaurs and other animals, and the really big ones had lots of detail. The lighting in there was pretty bad and kept getting worse until it occured to me to turn on the light. At one point a giant ceramic owl fell from the rafters and half-smashed on the floor, and I was relieved that it had missed the table and hadn't broken any of my art. People kept coming in and looking at my stuff or just randomly wandering in and out, and one of them was a friend I had in elementary school who I haven't spoken to in many years, only in the dream I apparently still knew her pretty well because we were discussing art stuff. We got onto the subject of making jewelry and she showed me a couple of rediculously impressive little metal pendants she had found somewhere. One of them was shaped like a tiny domed building, and if you opened the little door and looked inside there were tiny metal people dancing (literally moving) under a tiny chandelier. The whole thing was made of gold and on a gold chain.
That dream melded into another one in which I was at a family reunion showing off the little metal building. My grandparents and cousins were all there and we were sitting in chairs around the edge of a small square bedroom with a big fancy bed in the middle. Everything from the curtains to the carpet to the fluffy comforter were pink and frilly. No one thought it was weird to be in there, lol. I mostly listened in on conversations for awhile but people kept talking about things I didn't really understand. Eventually I decided to go home. I was walking around and saying goodbye to everyone when I woke up.
In one dream I was working for this company that apparently helped people edit their papers. It was a kind of fancy looking office and we all had to wear suits. All the furniture was shiny polished hardwood. A client would come in and check in at this library desk, and then the receptionist would send them back to one of our editing cubicles.
It was apparently my first day on the job and my first ever client turned out to be an acquaintance from high school, only in the dream I thought I knew her from Japan. I was relieved to have someone I knew because that way I wouldn't have to be all formal and nervous. We talked for awhile and she gave me a research paper for grad school to edit. It wasn't that hard but I was starting to get sleepy sitting in my comfy armchair. I started to move around, finding excuses to stand up because I needed to wake up again. Unfortunately this strategy backfired and I got really tired and started having trouble pretending I was fine.
The next dream I had took place at my house except that it was still my senior year of college. Our garage was the Carleton ceramics studio, and if you went into the actual house it was nothing but twisting hallways with these framed bold graphic poster-sized drawings hanging neatly on both walls. Apparently I had just finished my senior comps project and was pulling it out to look at everything in the garage. The last person to be in there had left a slide projector and a lamp across the street in a park for some reason, and I was annoyed because it could have easily been stolen. I took both back into the garage but left the garage door open because even though it was foggy outside there would be better light in there that way. I had laid out all of my work on a table and was looking at it. It didn't look great, because the glaze had come out kind of weird and not how I'd planned, but I figured it would work anyway. I had lots of different sizes of dinosaurs and other animals, and the really big ones had lots of detail. The lighting in there was pretty bad and kept getting worse until it occured to me to turn on the light. At one point a giant ceramic owl fell from the rafters and half-smashed on the floor, and I was relieved that it had missed the table and hadn't broken any of my art. People kept coming in and looking at my stuff or just randomly wandering in and out, and one of them was a friend I had in elementary school who I haven't spoken to in many years, only in the dream I apparently still knew her pretty well because we were discussing art stuff. We got onto the subject of making jewelry and she showed me a couple of rediculously impressive little metal pendants she had found somewhere. One of them was shaped like a tiny domed building, and if you opened the little door and looked inside there were tiny metal people dancing (literally moving) under a tiny chandelier. The whole thing was made of gold and on a gold chain.
That dream melded into another one in which I was at a family reunion showing off the little metal building. My grandparents and cousins were all there and we were sitting in chairs around the edge of a small square bedroom with a big fancy bed in the middle. Everything from the curtains to the carpet to the fluffy comforter were pink and frilly. No one thought it was weird to be in there, lol. I mostly listened in on conversations for awhile but people kept talking about things I didn't really understand. Eventually I decided to go home. I was walking around and saying goodbye to everyone when I woke up.
Monday, October 5, 2009
Kind of Bummed
Well, I called my doctor today and sure enough he wants me to start at a lower dose by cutting the pills in half for the first week. That's fine by me, and hopefully I won't have stomach issues. I totally realized that I've been a little depressed for a couple days ever since I stopped the Nuvigil, and now I'm wondering if that's not a sign of gluten being in it. I guess I'll find out this week if I react to it or if stopping it suddenly was what threw me out of whack. I should probably just call them and find out if it has gluten, but I figure if I try it again instead at least I'll get to be awake for a day or two before it catches up with me. I'm so damned sick of being this tired that I'd rather brave gluten than play it safe.
I'm also kind of bummed because my back up plan of moving to Canada looks like it's not going to work. First of all, you have to prove you can support yourself for at least six months, which I can't even do here- otherwise I would have a job and not have my impending health insurance problem to begin with. But even more troubling is the fact that they do examine your health when you apply for a visa and they won't let you in if you would cost their health insurance system a whole lot of money. Which I'm pretty sure I would. I'm not going to discount the possibility completely, but it isn't looking promising. So it's back to coming up with some other creative solution to my problem.
I'm also kind of bummed because my back up plan of moving to Canada looks like it's not going to work. First of all, you have to prove you can support yourself for at least six months, which I can't even do here- otherwise I would have a job and not have my impending health insurance problem to begin with. But even more troubling is the fact that they do examine your health when you apply for a visa and they won't let you in if you would cost their health insurance system a whole lot of money. Which I'm pretty sure I would. I'm not going to discount the possibility completely, but it isn't looking promising. So it's back to coming up with some other creative solution to my problem.
Saturday, October 3, 2009
Back to Crap
I changed my strategy this morning, but I'm not sure at this point if it was the right thing to do.
Even though I was really sleepy last night, it took me an hour after the first dose of Xyrem to actually fall asleep because my heartrate was still up. When I did eventually sleep I didn't dream at all and got a lot of rest, which was good. But when I woke up this morning I was a little annoyed to find my heartrate still faster than was comfortable. I decided to not take the Nuvigil this morning and talk to my doctor on Monday first, just to be safe.
At the time it did make a lot of sense. Besides the whole better safe than sorry thing, I felt so wired and hyper yesterday that I'm wondering if starting at a lower dose would be a good idea. At any rate, I figured waiting to talk to my doctor about it would be worth it.
It's amazing how feeling awake for just one day can make you forget how it was before. By the time I was going to lunch with a friend I was back to being totally exhausted even though I didn't do anything in the morning. It was frustrating and by the afternoon I had decided that I should have tried the Nuvigil again anyway. I mean, maybe it would have mellowed out over a couple of days. And it made such a huge difference in my life for the 24 hours I was trying it.
I just really want this to work, because if it does I'm one step closer to maybe being able to be employed some day. Being able to work would mean I could have health insurance even after my dad's stops covering me in a year, maybe actually be able to support myself someday without my body giving out on me. And someday maybe I wouldn't have to live in my parents' house completely dependent on them because I can barely do the small amount of classes I'm doing, much less actually make money somehow.
As you can see, I'm having trouble not getting my hopes up. It's dangerous because if anything goes wrong with this newest experiment I'm going to come crashing back down to earth again. And reality kind of sucks.
Even though I was really sleepy last night, it took me an hour after the first dose of Xyrem to actually fall asleep because my heartrate was still up. When I did eventually sleep I didn't dream at all and got a lot of rest, which was good. But when I woke up this morning I was a little annoyed to find my heartrate still faster than was comfortable. I decided to not take the Nuvigil this morning and talk to my doctor on Monday first, just to be safe.
At the time it did make a lot of sense. Besides the whole better safe than sorry thing, I felt so wired and hyper yesterday that I'm wondering if starting at a lower dose would be a good idea. At any rate, I figured waiting to talk to my doctor about it would be worth it.
It's amazing how feeling awake for just one day can make you forget how it was before. By the time I was going to lunch with a friend I was back to being totally exhausted even though I didn't do anything in the morning. It was frustrating and by the afternoon I had decided that I should have tried the Nuvigil again anyway. I mean, maybe it would have mellowed out over a couple of days. And it made such a huge difference in my life for the 24 hours I was trying it.
I just really want this to work, because if it does I'm one step closer to maybe being able to be employed some day. Being able to work would mean I could have health insurance even after my dad's stops covering me in a year, maybe actually be able to support myself someday without my body giving out on me. And someday maybe I wouldn't have to live in my parents' house completely dependent on them because I can barely do the small amount of classes I'm doing, much less actually make money somehow.
As you can see, I'm having trouble not getting my hopes up. It's dangerous because if anything goes wrong with this newest experiment I'm going to come crashing back down to earth again. And reality kind of sucks.
Friday, August 28, 2009
The Downhill Slide
Lately there's been so much going through my head that it's been difficult to sort out. The basic summary is that, at the moment, I'm feeling really overwhelmed by life. For one thing, the quarter is really gearing up right now and I have three difficult projects on my mind. I have several weeks of classes left, but I'm still really worried about getting it all done. Knowing me I'll manage it despite everything and even get really good grades. But this quarter has been harder than any before it even though I'm taking three classes instead of four.
I'm not sure exactly what's up, but it scares me a little. I'm more tired than I've been in a long time. I keep cutting back- doing less, being really careful about how much energy I use up. It has helped a lot, especially my new strategy for walking my dog. But no matter what I do I still seem to end up struggling with what I have left. I'm staying home so much more, taking more naps, but I'm still not sleeping well. It's gotten difficult to sit through my three hour classes. It wears me out so bad that I worry about driving home. I've been leaning more on caffeine than I would like, but it's the only thing that gets me through some days.
I'm also stressed out about possibly needing surgery on my sinuses. The prospect of having something else to deal with is not appealing. I'm also not sure if it's necessary, and at this point I'm kind of wishing I had picked my own ENT instead of letting my mom set me up with a surgeon. On the other hand, surgery may actually fix my problem instead of just postponing it like all of those horsepill antibiotics I've been taking for years. But I also wonder if it's not my inner-nose anatomy so much as my screwed up immune system to blame. I'm not going back to consult with the ENT until two weeks from Monday, but I'm taking both parents because I want actual brains there asking the relevant questions. I figure between the three of us there'll at least be about a brain and a half actually present.
And along with the stress and the classes and the driving and the doctors, I've been thinking a lot about my future. Saying that I'm worried would be a pretty big understatement. If I can barely do what I'm doing right now, and it's a fight that I have to fight every day tooth and nail to not outright lose, I'm really not sure how I'm going to handle employment. I'm being forced to digest options that do not appeal to me, like being financially dependent on other people for the rest of my life. Like not moving out of my parent's house for multiple more years. As I'm feeling worse right now it's difficult to say whether or not a part-time job is realistic, but even in slightly better times it has been more than I could handle.
Intellectually I know that it's not my fault. I know that I'm doing my best and that's all I can do even when it isn't quite enough. But part of me is ashamed that I had to drop down to three classes instead of four, and it hurts my pride that I need to look realistically at the idea I may not be able to work enough to support myself. I think in our culture these things are really important- the difference between success and failure, and if you aren't making it it means you just aren't working hard enough. But I know that I don't want my life to be the rat race, and that even if I did there's no way I could sustain it. So I'm trying not to let it upset me. Good luck with that, girl.
I'm not sure exactly what's up, but it scares me a little. I'm more tired than I've been in a long time. I keep cutting back- doing less, being really careful about how much energy I use up. It has helped a lot, especially my new strategy for walking my dog. But no matter what I do I still seem to end up struggling with what I have left. I'm staying home so much more, taking more naps, but I'm still not sleeping well. It's gotten difficult to sit through my three hour classes. It wears me out so bad that I worry about driving home. I've been leaning more on caffeine than I would like, but it's the only thing that gets me through some days.
I'm also stressed out about possibly needing surgery on my sinuses. The prospect of having something else to deal with is not appealing. I'm also not sure if it's necessary, and at this point I'm kind of wishing I had picked my own ENT instead of letting my mom set me up with a surgeon. On the other hand, surgery may actually fix my problem instead of just postponing it like all of those horsepill antibiotics I've been taking for years. But I also wonder if it's not my inner-nose anatomy so much as my screwed up immune system to blame. I'm not going back to consult with the ENT until two weeks from Monday, but I'm taking both parents because I want actual brains there asking the relevant questions. I figure between the three of us there'll at least be about a brain and a half actually present.
And along with the stress and the classes and the driving and the doctors, I've been thinking a lot about my future. Saying that I'm worried would be a pretty big understatement. If I can barely do what I'm doing right now, and it's a fight that I have to fight every day tooth and nail to not outright lose, I'm really not sure how I'm going to handle employment. I'm being forced to digest options that do not appeal to me, like being financially dependent on other people for the rest of my life. Like not moving out of my parent's house for multiple more years. As I'm feeling worse right now it's difficult to say whether or not a part-time job is realistic, but even in slightly better times it has been more than I could handle.
Intellectually I know that it's not my fault. I know that I'm doing my best and that's all I can do even when it isn't quite enough. But part of me is ashamed that I had to drop down to three classes instead of four, and it hurts my pride that I need to look realistically at the idea I may not be able to work enough to support myself. I think in our culture these things are really important- the difference between success and failure, and if you aren't making it it means you just aren't working hard enough. But I know that I don't want my life to be the rat race, and that even if I did there's no way I could sustain it. So I'm trying not to let it upset me. Good luck with that, girl.
Monday, July 20, 2009
A Couch Day
I had a slow day today. I managed to get it through my stressed out head that I needed a day on the couch. I've totally worn myself out this weekend and it was getting worse as I kept pushing myself anyway. So today it was just me, my dog and the tv. I found a new cleaning strategy too- if I only clean during commercials, I can rest and still get things done at the same time. Muahaha.
It has, however, brought my job worries back to the front of my mind. Fortunately, after years of vague unarticulated fears, I'm finally really able to pinpoint why I'm so worried about eventually trying to support myself. Unfortunately, the fears are actually founded in something. I'm finally really beginning to digest the fact that I have Narcolepsy, and to really understand what this means for the rest of my life.
When I was first diagnosed, I was just really happy to have a diagnosis that might result in some treatment and relief from the nightly horror film festival. And I was very happy (and still am) with how much the Xyrem helped my nightmares and hallucinations go away. I was also very happy and encouraged when the Remeron turned out to take care of the side effects and, as a bonus, the depression I've been fighting for so many years. I've been gaining weight back (triple digits again! Woohoo!) and feeling much better about life in general. Everyone I know has been commenting on how much better I look.
But as I approach the maximum dose of Xyrem, it's beginning to sink in that I'm never going to have the energy of the people around me. I'm never going to be awake and alert they way my dad is, or any of my friends. I will always run smack into things and hurt myself because I literally can't accurately place my body in the world around me. Every day I will have to fight the exhaustion that forces me to take naps just to keep going. I'm always going to catch colds every other week, and have to spend days like today lying down for hours to recover from my occasional attempts to be social. A couple hours at the mall pretending to be normal, and here I am still recovering two days later.
I would be lying if I said it doesn't scare the crap out of me. I'm in my prime right now. This is the healthiest time of my life. If this is the height of my energy level, how will it be in ten years? Twenty years? I'll probably look back wistfully and think of how great it was to be able to function for an hour at a time. If I'm worried about supporting myself now, how will I manage in the future?
I have two-ish years left on my dad's insurance, which gives me a bit of a deadline. But I'm seriously wondering why anyone will want to hire me when they can hire someone with similar skills, or even slightly less, who can actually work all day. Someone who doesn't have make every meal herself and work in two hour spurts separated by naps. Someone who isn't easily confused and a bit awkward because she can't think fast enough to keep up. Every time I've been interviewed by someone, I've ended up crying because I get so lost during the rapid-fire questioning.
I've been thinking that maybe the best way to handle the situation is to start my own business. If I go freelance, I can work in between my really rigid daily routine that gives me my maximum amount of ability to function. So that's a thought. But I'm not going to completely let go of the idea of working part time. Though I really don't think I could stay healthy and make enough to support myself doing that. Full time is pretty much out of my equation right now. Full time would be like college, only with more rigid hours. And I've made a promise to myself that I'm not doing that again.
I think I would feel better about things if the people around me understood my fears instead of just brushing them off and telling me that I'll be fine. It really urks me and adds to the anxiety because if the people who have known me for my whole life don't believe me when I tell them I have a legitimate, life-screwing problem, how will I convince possible employers of my special needs? Last time I registered for classes, one of the academic advisors was giving me a hard time about only taking four classes. And when I explained that I had multiple health issues, he didn't believe me. Yeah, that boosted my confidence.
So for now I'm just going to keep worrying and trying to explain my fears in the hopes that people might actually believe me more often in the future. And continue slowly working my way through more classes so that the people in my life don't give me too hard a time. Here's to many more days on the couch.
It has, however, brought my job worries back to the front of my mind. Fortunately, after years of vague unarticulated fears, I'm finally really able to pinpoint why I'm so worried about eventually trying to support myself. Unfortunately, the fears are actually founded in something. I'm finally really beginning to digest the fact that I have Narcolepsy, and to really understand what this means for the rest of my life.
When I was first diagnosed, I was just really happy to have a diagnosis that might result in some treatment and relief from the nightly horror film festival. And I was very happy (and still am) with how much the Xyrem helped my nightmares and hallucinations go away. I was also very happy and encouraged when the Remeron turned out to take care of the side effects and, as a bonus, the depression I've been fighting for so many years. I've been gaining weight back (triple digits again! Woohoo!) and feeling much better about life in general. Everyone I know has been commenting on how much better I look.
But as I approach the maximum dose of Xyrem, it's beginning to sink in that I'm never going to have the energy of the people around me. I'm never going to be awake and alert they way my dad is, or any of my friends. I will always run smack into things and hurt myself because I literally can't accurately place my body in the world around me. Every day I will have to fight the exhaustion that forces me to take naps just to keep going. I'm always going to catch colds every other week, and have to spend days like today lying down for hours to recover from my occasional attempts to be social. A couple hours at the mall pretending to be normal, and here I am still recovering two days later.
I would be lying if I said it doesn't scare the crap out of me. I'm in my prime right now. This is the healthiest time of my life. If this is the height of my energy level, how will it be in ten years? Twenty years? I'll probably look back wistfully and think of how great it was to be able to function for an hour at a time. If I'm worried about supporting myself now, how will I manage in the future?
I have two-ish years left on my dad's insurance, which gives me a bit of a deadline. But I'm seriously wondering why anyone will want to hire me when they can hire someone with similar skills, or even slightly less, who can actually work all day. Someone who doesn't have make every meal herself and work in two hour spurts separated by naps. Someone who isn't easily confused and a bit awkward because she can't think fast enough to keep up. Every time I've been interviewed by someone, I've ended up crying because I get so lost during the rapid-fire questioning.
I've been thinking that maybe the best way to handle the situation is to start my own business. If I go freelance, I can work in between my really rigid daily routine that gives me my maximum amount of ability to function. So that's a thought. But I'm not going to completely let go of the idea of working part time. Though I really don't think I could stay healthy and make enough to support myself doing that. Full time is pretty much out of my equation right now. Full time would be like college, only with more rigid hours. And I've made a promise to myself that I'm not doing that again.
I think I would feel better about things if the people around me understood my fears instead of just brushing them off and telling me that I'll be fine. It really urks me and adds to the anxiety because if the people who have known me for my whole life don't believe me when I tell them I have a legitimate, life-screwing problem, how will I convince possible employers of my special needs? Last time I registered for classes, one of the academic advisors was giving me a hard time about only taking four classes. And when I explained that I had multiple health issues, he didn't believe me. Yeah, that boosted my confidence.
So for now I'm just going to keep worrying and trying to explain my fears in the hopes that people might actually believe me more often in the future. And continue slowly working my way through more classes so that the people in my life don't give me too hard a time. Here's to many more days on the couch.
Monday, July 13, 2009
Tired, Not Lazy
Today was just one of those days.
I thought I had slept reasonably well- I didn't remember any dreams when I woke up, which is usually a good sign because it means I didn't spend all night in creepy REMland. But I quickly realized I had way less energy today. Which would have been okay because I only had two quick errands to run, if it weren't for the pest control guy.
Periodically we have the outside of our house sprayed to keep out the bugs, and the guy who does it is really very nice. He also likes to chat. I think he really does just have an interest in people and what they're doing, which is fine. But he tends to send off an endless line of rapid-fire questions that actually require thought to answer, which I was not up for today. He had parked behind my car when I went out to run my errands, so I couldn't leave until he did, and he hadn't talked to me for a long time, so of course he started interrogating me about the last four or so years. It took all of my remaining energy just to process questions and come up with answers that didn't make me sound like a total moron. And they kept coming- so what are you doing now? Taking classes? Is that all? You mean you don't have a job or anything?
Not feeling like explaining my illnesses to yet another clueless person, I kept brushing him off this line of questions until he finally changed the subject. And eventually left, thank god. But at that point I was beat. I ran my errands and came home and crashed. I didn't get up off the couch until dinner.
It also bothered me because it seems like a conversation I keep having over and over. It just drives me completely crazy that I'm supposed to be doing so much at once all the time. When I visit relatives, it's always "Just school? Why aren't you working? Why don't you have a boyfriend? Well what else are you doing?" and I just get sick of it. Yeah, I have illnesses that slow me down a huge amount, but frankly I've decided that no one, healthy or otherwise, should have this crazy fast-paced schedule that doesn't give them a chance to slow down. It's just insane. But because that's what people expect, that's what I did for years even though my body just couldn't handle it. And now that I've finally started living a healthier way everyone thinks I'm a total slacker. I'm not making this up- my best friend keeps trying to set me up with part time jobs, and no matter how much I explain to my dad that I'm exhausted, he just doesn't think I'm doing enough unless I'm taking a full load of classes- which I can barely manage most quarters. And he gives me a hard time for lying on the couch as if resting is a waste of my time. Even my mom, who has way more health issues than I do, is working full time and travelling all over the country- and getting sicker and sicker. Soon it's going to come to a point where she'll have to quit. And then, when I confide in her my misgivings about working, she tells me I'll be fine. Thanks, mom. XD
And you know, maybe I will be fine. If people would stop hassling me about how I choose to spend what little energy I have. I don't expect them to relate or even understand- just stop acting like I'm the laziest person on Earth for not juggling eight things at once. I have enough self-esteem issues without any help, thank you. XD
I hate to end on such a complain-y note, so to make up for it I'm going to insert an adorable picture of my rediculously cute dog:
I hope that helps. XD Haha. Just look at that face.
I thought I had slept reasonably well- I didn't remember any dreams when I woke up, which is usually a good sign because it means I didn't spend all night in creepy REMland. But I quickly realized I had way less energy today. Which would have been okay because I only had two quick errands to run, if it weren't for the pest control guy.
Periodically we have the outside of our house sprayed to keep out the bugs, and the guy who does it is really very nice. He also likes to chat. I think he really does just have an interest in people and what they're doing, which is fine. But he tends to send off an endless line of rapid-fire questions that actually require thought to answer, which I was not up for today. He had parked behind my car when I went out to run my errands, so I couldn't leave until he did, and he hadn't talked to me for a long time, so of course he started interrogating me about the last four or so years. It took all of my remaining energy just to process questions and come up with answers that didn't make me sound like a total moron. And they kept coming- so what are you doing now? Taking classes? Is that all? You mean you don't have a job or anything?
Not feeling like explaining my illnesses to yet another clueless person, I kept brushing him off this line of questions until he finally changed the subject. And eventually left, thank god. But at that point I was beat. I ran my errands and came home and crashed. I didn't get up off the couch until dinner.
It also bothered me because it seems like a conversation I keep having over and over. It just drives me completely crazy that I'm supposed to be doing so much at once all the time. When I visit relatives, it's always "Just school? Why aren't you working? Why don't you have a boyfriend? Well what else are you doing?" and I just get sick of it. Yeah, I have illnesses that slow me down a huge amount, but frankly I've decided that no one, healthy or otherwise, should have this crazy fast-paced schedule that doesn't give them a chance to slow down. It's just insane. But because that's what people expect, that's what I did for years even though my body just couldn't handle it. And now that I've finally started living a healthier way everyone thinks I'm a total slacker. I'm not making this up- my best friend keeps trying to set me up with part time jobs, and no matter how much I explain to my dad that I'm exhausted, he just doesn't think I'm doing enough unless I'm taking a full load of classes- which I can barely manage most quarters. And he gives me a hard time for lying on the couch as if resting is a waste of my time. Even my mom, who has way more health issues than I do, is working full time and travelling all over the country- and getting sicker and sicker. Soon it's going to come to a point where she'll have to quit. And then, when I confide in her my misgivings about working, she tells me I'll be fine. Thanks, mom. XD
And you know, maybe I will be fine. If people would stop hassling me about how I choose to spend what little energy I have. I don't expect them to relate or even understand- just stop acting like I'm the laziest person on Earth for not juggling eight things at once. I have enough self-esteem issues without any help, thank you. XD
I hate to end on such a complain-y note, so to make up for it I'm going to insert an adorable picture of my rediculously cute dog:
I hope that helps. XD Haha. Just look at that face.
Tuesday, July 7, 2009
Nap Assisting
Yeah, won't screw me up as much, haha. Never mind. I was basically useless today and spent most of the time napping or watching tv. At least I had my nap buddy with me. I've decided that my dog is a professional Nap Assistant. Basically he naps with me so that I feel less like a loser for needing to sleep a lot. Having a dog around is such a massive improvement in life. He injects a healthy amount of adorableness and company into my mostly hermit-like existence. And it is so refreshing to have someone around who not only doesn't think I'm lazy or unproductive or whatever for laying down, but also doesn't pity me for it or worry. Thank god for nonjudgemental animals.
Well, I still think raising it slower was the right thing to do. I'm just starting to wonder how next quarter will go. I'll have classes starting next week, and hopefully medication issues won't complicate things too much. I doubt it will matter. If there's one thing I'm incredibly good at, it's hiding my issues and pretending my way through higher education. XD If only I knew how to translate that into a job setting. I think I have so much trouble with the very idea of getting a job because my few previous experiences were pretty bad and awkward, mostly because those required me to be focused and paying attention, which (obviously because of my Narcolepsy) is something I'm definitely bad at. So I made a pretty inadequate office assistant, TA, and English tutor, despite trying hard. I sort of fudged my way through it all somehow and ended up quitting as soon as I could. I'm not sure where to go from here when it comes to a job- I'm too sleepy/exhausted for retail or other on-your-feet jobs, too zoned out for phone answering, and anything that requires sitting for long periods of time will make me fall asleep. Talking to people is awkward because I zone out. I'd love to work with dogs or something, but I'm too easily tired out- I can barely keep up with my dog, and his body is like 3 inches off the ground, haha.
Luckily for now I can just keep taking classes and live at home. And I'm covered by my dad's insurance for another year and a half. So I really don't need to worry about it yet. However, I'm going to worry anyway, damn it.
Tomorrow should be fun. The plan is to hang out with my grandparents. I like doing things with them partially because they also need to rest a lot. When I go to their house I bring my dog and we all group nap. :D But besides that we of course just really enjoy each other's company.
Well, I still think raising it slower was the right thing to do. I'm just starting to wonder how next quarter will go. I'll have classes starting next week, and hopefully medication issues won't complicate things too much. I doubt it will matter. If there's one thing I'm incredibly good at, it's hiding my issues and pretending my way through higher education. XD If only I knew how to translate that into a job setting. I think I have so much trouble with the very idea of getting a job because my few previous experiences were pretty bad and awkward, mostly because those required me to be focused and paying attention, which (obviously because of my Narcolepsy) is something I'm definitely bad at. So I made a pretty inadequate office assistant, TA, and English tutor, despite trying hard. I sort of fudged my way through it all somehow and ended up quitting as soon as I could. I'm not sure where to go from here when it comes to a job- I'm too sleepy/exhausted for retail or other on-your-feet jobs, too zoned out for phone answering, and anything that requires sitting for long periods of time will make me fall asleep. Talking to people is awkward because I zone out. I'd love to work with dogs or something, but I'm too easily tired out- I can barely keep up with my dog, and his body is like 3 inches off the ground, haha.
Luckily for now I can just keep taking classes and live at home. And I'm covered by my dad's insurance for another year and a half. So I really don't need to worry about it yet. However, I'm going to worry anyway, damn it.
Tomorrow should be fun. The plan is to hang out with my grandparents. I like doing things with them partially because they also need to rest a lot. When I go to their house I bring my dog and we all group nap. :D But besides that we of course just really enjoy each other's company.
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