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.

Bring On the Ice Cream

Okay, so I know there's some pretty weird stuff I've been blogging about lately, related to narcolepsy and not. But this latest suspicion of mine really takes the (GF and soy-free) cake.

So we all grew up knowing two things about ice cream: it's delicious, and it's bad for you. I mean, frozen cream with massive amounts of sugar in it seems to be, according to common sense, bad for you, right? I mean, it's basically sugary fat. Can you get more unhealthy, really? Or so I thought...

For four years or so I was quite underweight, thanks to Xyrem and a complete lack of interest in cooking (a killer when you're on a special diet). My lowest weight was 92 lbs, and though I am a small person, I was around 20 lbs too light. I could feel it. My bones were sticking out and I was cold all the time because I had no fat whatsoever. I felt physically weak. I had a hard time finding small enough bras for awhile, and I was wearing size 0 jeans (which were a little loose). Many people say they'd kill for that, but I felt horrible. I felt so unhealthy. I had no energy, which, when you already have narcolepsy to contend with, basically made life impossible. I felt like one of those skeletons that show up all the time in my dreams, crumpled up on the couch.

Finally I had a falling out with my neurologist because I was sick of being a stick figure, and the Xyrem had mostly stopped getting me sleep anyway. So I stopped taking it and slowly started to recover the weight I needed. I immediately felt better, learned how to cook (what a difference an appetite makes), and started eating a ton of really healthy, homemade food every day. I'm sure the story would have been different if I'd started eating junk food or even GF frozen dinners like I had before, but on all the veggies I gained weight back slowly and flesh started showing up in areas where it was needed. A year later, you couldn't see my hip bones anymore and I actually had curves again. Soon after, I leveled out at around 107 lbs and felt so much healthier and stronger. Even so, I felt cold a lot of the time and like I needed a little bit more meat on my bones. I mean, winter in Iowa really kind of requires extra padding.

Around that time I started noticing how often I was craving cheese. I've always really liked cheese, but I had started putting it on everything. My fiance didn't mind; he loves cheese too, the more the better. Since our diet contains mostly vegetables, fruit and occasionally fish or chicken, I kind of figured I was craving dairy since it's got a lot of protein in it. I didn't worry too much about it and kept piling on the cheese. And then I started craving cheese and ice cream. I hadn't had ice cream in over a year; I tend to avoid sugar products because once you stop eating them, small amounts make you anxious and kind of crazy. But this craving was pretty over the top. So I got a little carton of Haagen-Dazs to see how it went. I like that brand because it's pure ice cream, none of this modified-food-starch-whatever-chemicals nonsense, and you can tell because it tastes insanely good, like real food. Plus a lot of the flavors are gluten-free, and actually gluten-free- no contamination at all. The same goes for soy. Some flavors have it, but only where necessary, and as long as I read to label I haven't had a problem.

So I thought, okay, it's just for a treat this week. But the craving kept up, and suddenly I was gaining weight again. I went from 107 to 113 in a week and the only difference was the ice cream. Alarmed, I stopped buying it. I've heard it's easy to get overweight if you have narcolepsy, so I'm wary. After a week without any in the freezer, I dropped back down to 107, and realized I was suddenly cold all the time again. Okay... was my body telling me that ice cream is good for it? That it needed ice cream to round out my healthy diet? o.O To have enough body heat?

So this turns my idea of health food upside own. I find myself thinking, maybe it isn't that some foods are always bad or always good for you. Maybe being healthy is about paying attention to what your particular body needs, watching how you feel. Maybe it isn't all so clear-cut. The rest of life isn't, so why would food be? Our bodies are amazing, beautifully constructed, and complex. Maybe you can't just rely on other people's advice, even that of the experts. Maybe you have to listen. The more I listen to my body, the more interesting things I discover.

I don't know what's weirder- my body legitimately needing ice cream to maintain the proper weight or the irony of something cold ultimately making me warmer. Now I keep some in the freezer all the time and pay attention to my intuition. If my body says it wants ice cream, I eat some and feel better. If I feel I don't need it then I avoid it. Now that the weather is slowly warming up I've been needing it less. I don't have to think it through. I just have to pay attention.

Welcome to the Middle of Nowhere, USA

I may have said when we were living in Wisconsin that we were living in the middle of nowhere. At the time, compared to my hometown of Houston, I was right. There were several sizable towns nearby, but my inlaws' house was in the middle of farm fields on a big slab of land. In Houston, going around the block was the shortest walk I would take with my dog, while in Wisconsin it meant my girlfriend taking the dogs out for hardcore exercise (a distance of over 3 miles, which would take nearly two hours for them to walk). It took quite a bit of driving to get to any form of civilization and there were days when you might see ten cars on the way. In Houston there's traffic getting out of the driveway, and I could walk to three separate shopping centers if I had the energy.

That was all before we moved to Iowa. No offense meant to the state or its people, but it seriously must be one of the least populated states. This place defines "the middle of nowhere". Some things about this are awesome. For example, there are way more small businesses here, run by families rather than huge faceless corporations (with Walmart as the main exception). The local pharmacy isn't a chain store, the grocery store is employee owned, and there are lots of cool little thrift, antique and gift shops around, including a little coop. There's also a cool little main street, like many small Midwestern towns have, with the old architecture and so forth. The downside is that there's a lot you can't get within two hours of here (the nearest city is about that far away). Our big dog is allergic to most grains, and there is literally no grain-free dog food being sold within a hundred miles; we have to order it online. Now that it's winter, there are fewer than ten vegetables at the grocery store, and most of them are usually sad-looking. We're lucky if we can find three that are fresh every time we go and we're starting to get tired of the same ones. Whole Foods? What's Whole Foods?? This also means no sushi for me; I doubt the people here have even tried sushi, and they're all blindingly white anyway, so not exactly about to start a sushi restaurant.

That's another thing; I thought Wisconsin had a lack of racial diversity. My girl had her kids (the high schoolers she's teaching English for) make video projects about themselves at the beginning of the year, and I watched them with her to help her grade them. Seriously, these kids all look the same. They all have exactly the same skin tone and their hair comes in two colors. o.O I was getting them all confused within five minutes. But having grown up in a city where whites are the minority number-wise, it doesn't surprise me that it's difficult to understand such a white town. There's exactly one Asian girl, and she's half. My girlfriend is also finding this a little bit trying at times. She's been teaching To Kill A Mockingbird, and the kids are mostly ignorant about racism and are sometimes actually racist. Most of them have never even met a black person. Luckily we're white ourselves so it isn't something that gets directly in our way.

Though I'm sure we're causing enough chatter among the townsfolk anyway, being lesbians. Like all small towns, everyone knows everyone else, and there seems to be a pretty conservative undercurrent. My girlfriend hears about it more working at the school. She hasn't come out to her kids (though her co-workers do know about us) so they don't hide their homophobic comments around her. Two of the other teachers are also a lesbian couple, though they're older than us, and the kids make all sorts of comments about them. Naturally, she tries to educate them about tolerance, but it's pretty clear that their parents are just as close-minded and are passing it all on to their kids. Fortunately, the principal and several of the other teachers are openly supportive of us and really nice about it, and our sexuality hasn't compromised her job in any way (her boss has said that he hopes she'll stay on next year, and be with them for a long time).

For the most part, we've met a lot of really nice people here. One thing I like about it is that there's a thriving art community. The landscape itself is beautiful no matter the time of year, so it's not surprising that so many painters and ceramicists live in the area. We've gone on several weekend outings to studios and seen some really terrific work, including teapots, stained glass and several varieties of landscape paintings. I've made a couple of friends, and even gotten a drawing lesson from a local painter. It's awesome talking to people who have the same passion as you do for something and can look at your work with fresh eyes.

Right now it's a classic winter landscape outside with the snow building itself up. I'm having a lot less trouble adjusting to the cold weather this year because my body was allowed to adjust gradually throughout the fall. This place is beautiful, and we enjoy having our own place, and getting some income that isn't from parents, though we are still relying on them, too. We have a neat little house that is (more or less) functioning now (that's another story), we have our cats with us and our dogs, we have each other.