Maintaining motivation ...

I downloaded my pump data tonight for the first time in ages. I was thinking earlier about how well I've been doing for the past week, and how even with work I'm not feeling burned out at all. I was thinking that I needed to identify what was going well so that I could avoid whatever it was that caused me to burn out.

Well, I already know what causes me burnout, it's frustration. And I can tell you what causes me frustration. It's feeling like I've been having a really good week and am going to download my readings and see if I can't spot some patterns, and doing so to see this:

Link to picture.

and noting that most of my readings are high. And then seeing this:

Link to picture.

and noting that in fact exactly 64% of them are high (and that's not showing several lows I've had, because I don't put them in my pump since they don't require insulin). And then seeing this:

Link to picture.

and noting that I cannot spot any pattern to that whatsoever. It looks nearly random.

And this is a good week, when I've been measuring everything, haven't eaten any crap, am not sick, am not stressed, and I was motivated and actively trying.

And this is the "reward" I get??

I know it's just one week, but this is usually what it's like, week after week. How can I overcome that kind of negative reinforcement? No wonder I get burned out. I've just broken a strong if months of quite literally not caring and not paying attention to anything. It will be interesting what my A1c is (I'll find out in the next few weeks). I cannot fall that badly again ... but I really have to find a way to stay motivated even when my very best efforts produce about half of my readings in range.

I am still going to call up and ask about a continuous glucose monitor this week, see if I can't get one to try, and then I'll look into insurance and see if my insurance will cover one (I can hope). I cannot just keep getting more flashy tools in order to motivate me, though. I've got to find some way of running on my own steam.

Rude awakening

Uuuuggh something went wrong with my pump somewhere!

I realized when I got up during the night that it was the second time I'd gotten up to go use the washroom. Also realized I felt really thirsty.

I test and I'm 20.7 (373 mg/dl).

I test ketones and they're 0.7.

Yuck!

It was only 5:30 and I start work today and sooooo did not feel like dealing with this. I wanted to go back to bed and get another hour of sleep. And I felt horrible ... ugh.

So I pulled my infusion set thinking that was the problem, and it was totally unkinked and looked fine. Then I checked the tubing, and I swear the entire length of tubing was mostly just AIR! Hardly any insulin at all! There were some areas of insulin but still mostly air. How the entire tubing could get filled with air I had no idea ...

And then I discovered when I went to unscrew the tubing that the entire top part of the cartridge has somehow been cracked, so insulin is all over the sides and not going anywhere.

That has happened to me once before when I dropped my pump, but I caught it right away. And I *did* drop my pump before bed, but I didn't check that part. I am very glad that I'd just taken a correction bolus before dropping it.

Maybe I can get half an hour of sleep after this and will feel better once the insulin from the shot I took kicks in a bit.

Running on empty

As of late diabetes has faded to the background. Not that it's any less work, but things have been going smoothly blood-sugar-wise. I've finally gotten out of whatever funk I was in for several months.

Earlier today I realized my pump was running low and, when I went to get more insulin, found that there was none in the fridge. Filling prescriptions is another of those diabetes tasks that must get done, but in my focusing less on diabetes, I had somehow forgotten.

Thankfully, I do have insulin in my backup pen. I ordered some from the pharmacy only to find they didn't have any in stock and wouldn't get any until tomorrow. And it gave me pause to think of what might happen if now, tonight, there were some major disaster that left me cut off from supplies. With less than a week's worth of insuiln (assuming I didn't run high), it would be cutting it closer than I like.

It makes me feel very dependent. It's astonishing to think sometimes of how a little handheld computer has kept me alive for the past year and a half. Without it, I would probably last mere days. And the insulin I depend on is available only with modern technology. Humbling, really.

I will fill my pump with half the insulin from the pen tonight (I don't like to have absolutely no backup so keep some in the pen), and will pick up my refill tomorrow. But I think from now on I will try to keep at least several extra cartridges of insulin around at a time, and try to order before I find my "insulin drawer" empty.

Pumpless

Guess who left her pump at home today?

*raises hand*

Yep. I forgot to reconnect after my shower.

Of course it would happen on a day when I'm at school from 8:00 to 3:00, as opposed to 8:00 to 10:30. It didn't go too badly, though. Not like last time. (Last time was in October and involved numbers in the 20s (400s mg/dl) that lasted for hours, and feeling very nauseated but having no way of testing for ketones.) I realized I was without a pump when I was on the bus halfway to campus. When I got to school it was about an hour and a half of being disconnected. I'd been worried I might go low after breakfast, which turned out to be a good thing considering. About ten hours and four Humalog shots later, though, I survived. Everything was actually really awesome until I ate lunch:

6:00 (woke up) - 6.1 (110 mg/dl)
8:00 (got to school) - 6.0 (108 mg/dl)
9:30 (during break) - 4.2 (76 mg/dl)
11:00 (after class) - 5.9 (106 mg/dl)
1:00 (before exam) - 13.6 (245 mg/dl)
2:30 (after exam) - 17.9 (322 mg/dl)
4:30 (got home) - 12.6 (227 mg/dl)

I felt sort of self-conscious doing shots. It's been a while since I've done a shot in public. Also, giving myself four units without eating anything before class felt really weird. I swear, I carry my Humalog pen with me as much for situations like this as my pump not working. I can be very forgetful!

I got home to my pump lying on my bed where I'd left it, alarming like crazy, and am now reunited.

Instincts

I swear sometimes I think if I only tested four times a day I'd do better than I do now testing eight to 10 times ...

I took my dad out for sushi tonight. Had zero idea of the carb count, but I added everything up to 100. Then realized I'd forgotten my meter at home, so I had no idea what my blood sugar was except that I'd corrected a high a few hours ago and upped my basal rate a tiny bit, and lowered my carb ratio a tiny bit because I've been stuck at 10-12 for a lot of the day.

Decided to back off to 80 grams as 100 seemed like too much. Then, because I was going to exercise immediately after eating (or nearly so), I backed waaaaay off on the bolus and only did 3.15 units instead of 6.15.

Then I went and exercised for 40 minutes. I am always paranoid that I'm going to go low when I exercise because it is impossible for me to feel when I'm low while exercising so I never know until I test. So I almost stopped several times out of paranoia but made myself finish.

Got home just now and tested, it's about two and a half hours after eating and half an hour after exercise, and I'm 6.7 (121 mg/dl). That is awesome and perhaps should throw science to the wind and just go on instinct all the time!

Less overwhelmed

School is over. I passed both my courses (I was sure I was going to fail statistics, but didn't). I can relax.

Work is going well, despite some unfavourable student evaluations at the college (hey, I suppose there always has to be a few ...).

Diabetes control is going well. I'm exercising every day, or almost every day. It's causing a lot of lows, which means I'm not feeling symptoms very well. Yesterday I dropped to 1.9 after working out and didn't feel it at all until after I got off the equipment. Today I tested just after an IEP meeting to find my blood sugar at 2.9. I did feel sort of low that time. Parents wanted to stay and chat, but I needed to eat. I hate that dilemma. Of course, I ate. I think aside from waking up low, lows at work at my least favourite. Especially in education, I can't just duck out for a few minutes to go eat and recover.

I was 14.6 the other day and that seemed exceedingly high, which is a good sign. I can't say that I'm necessarily having all (not even close) my blood sugars in range, but I'm doing better than I have been for the past few months. I'm aiming for below 6.5, when A1c time comes around.

I've decided next year (in school world this really means after the summer holidays) I'm going to cut down on work and committments. Maybe only work four days a week, if I can get away with that financially. These past few months trying to work full-time and do school part-time AND be active with several volunteer organizations was too much. Once you get to a certain point, trying to cram more in simply means that you get less done overall because you're not able to actually focus on doing a good job with anything, just on surviving.

I start graduate classes in the summer. I am beyond excited. It'll be a lot of work but it's in a field I love and am passionate about (education of students with visual impairments). I've never felt this excited about school before!

My blood sugars are insane

Seriously. Blood sugar is totally out of control and obeying no rules nor logic. My day went something like this:

I tested at 16.7 (300 mg/dl) for some unknown reason before bed last night. I decided to leave it and see what happened. Woke up at 2:00 in the morning to test and check it out and was still 16.8 (302 mg/dl). So I did a correction and went back to sleep.

This morning I woke up feeling like high-crap and got a lovely 13.9 (250 mg/dl) on the meter. Just such a great feeling, being high all night. I realize I've been wearing my infusion site for about five days, which is the probable reason for it apparently deciding to give out, so I changed sites. I corrected (with the old site) and ate breakfast and headed to work.

At work I tested before working with a student (about an hour and a half after breakfast) and got 7.1 (128 mg/dl). In range, but considering I'd been so high before eating I didn't like how much that had dropped in less than two hours. I ate two glucose tablets to make sure I didn't go low and then went and taught.

The student was uncooperative and did not want to work (she even told me so). So perhaps that stressed me out a wee bit. Then I went and had lunch. I didn't test before lunch but all I had was half a grilled-cheese sandwich and some chicken. Pretty standard stuff, so I bolused accordingly.

Two hours later I figure I should test, and get a 16.6 (299 mg/dl). I correct and then go out with my mom shopping. Takes about an hour. When I get home I'm feeling kind of nauseous so figure I should test for ketones and test the blood sugar. Ketones come out at small. I'm all prepared to change the set ... and then test. Blood sugar is 5.3 (95 mg/dl). I seriously do not believe it. It just makes no sense (though, granted the ketones were urine strips so those are delayed, but still!). I decide to wait half an hour and recheck.

Half an hour later I'm 2.8 (50 mg/dl). I eat glucoset tablets and wait fifteen minutes. Fifteen minutes later I'm 3.2 (58 mg/dl). I eat one or two more tabs and then start talking on MSN.

Half an hour later I decide to have dinner. Test expecting to finally, just maybe, possibly, be normal. I'm 12.1 (218 mg/dl). I do not believe I could have skyrocketed so much in just half an hour so recheck and get the same. I eat dinner and take a meal and correction bolus.

And now ... now. Now, an hour after dinner, I test at 5.9 (106 mg/dl), which is seemingly good but not good so soon after eating when insulin hasn't peaked. I decide not to eat and to wait. I wait twenty minutes and test again. This time I'm 7.1 (128 mg/dl). I don't know what to do. I'm scared to eat and I'm scared to not eat! I am about ready to throw the meter (or meters, because I am using multiple ones when double-checking) out the window.

I broke out the control solution tonight and, according to that, all three meters are accurate. So it appears my blood sugar is just deciding to make rapid, nonsensical shifts in direction at an alarming rate.

I may chuck this insulin and get new stuff. I'm beginning to believe the stuff in the vials is crap compared to the cartridges (penfills), because I do vaguely recall this happening the last time I got a vial.

I also am skipping breakfast, and likely lunch, tomorrow. I really don't know what is up but I can't live with my blood sugar being so unpredictable. This is worse than what it was doing when I was on shots! I really need to get back to square one and make sure my basals are correct and go from there. My blood sugars have just been insane for the past three days (they have all pretty much been like this, though not as extreme) and I have had enough.

Back issues

So, me lugging around literally 15-20 pounds on the bus all day has finally caught up to me.

I can hear my teachers' from high school ... I used to shove all my large print books, laptop, binders, lunch, and anything else that would fit in my backpack in there and lug it around rather than making pit stops at my lockers. They used to say, "You're going to have back problems later in life if you keep carrying bags that weigh that much!"

It's hard. I rely on public transit, which means that I'm not often close to my home. It's not easy to "pop home" to pick up or drop stuff off. And I'm working two different jobs and going to school, which means I have a lot of different stuff to carry around. Add all the junk I need to lug for diabetes- and blindness-related needs and that adds up fast.

For the past week or two my back has been killing me. Today it got to the point where I was trying to do homework and could not think of much else other than how to make myself more comfortable. Unfortunately, my back hurts the most when I'm sitting down. Yesterday or so the pain began to radiate down my leg, so I decided it was time to go to the doctor.

I went to the walk-in clinic where, thankfully, I was the only one there so got seen right away. The doctor says it's a strained muscle, and to put heat on it and that it usually takes a few weeks to fully heal. My back has gotten better in the past few days in that it no longer hurts quite as much, it just hurts constantly. I'm not sure I believe him that it's a pulled muscle, but he didn't seem to think it was anything serious, so I'll take it for now. If it doesn't go away in another week or two I'll make a visit to my own doctor.

In the meantime, I'm seriously trying to pare down what I have to carry around. I switched to a smaller purse even though it barely fits the bare essentials, and even though I love my leather purse, because it's lighter. If this is what back pain is like, I don't want to be one of those people who ends up with chronic back pain—that would just royally suck. Right now, as long as I keep Advil in my system, it doesn't bother me much.

A perfect example of my struggle to travel light comes tomorrow. I would like, ideally, to get up in the morning and go to the gym, which is a bus ride away and in the same direction as work. Then I'd like to go to work, and tomorrow I have to bring a portable CCTV for a student to try. After work I have a break in which I'd like to study for several hours. Then I have class up at UBC, and then the bus ride home. To bring gym stuff, work stuff, portable CCTV, and school/study stuff requires that I carry at minimum two bags, and that's going to weigh a lot. But if I leave some stuff at home it means that I can't get all of that done, which I find really frustrating.

I've also backed off on using screen magnification on my computer, and am currently using a screen reader. I really hate not being able to see what I'm writing (even though, yes, I can hear it), and for years now have been using screen magnification even though it obliges me to lean forward to see the screen. I read online (after getting back from the clinic) that poor posture can cause back strain, and that's definitely not good posture. I found longer ago that reading braille and sitting up straight was far less painful and fatiguing than hunching over a large print book, and since then I do most of my leisure reading using a refreshable braille display. Perhaps I will end up doing the same wtih the computer, as sitting back does make my back feel better, even if I can't see the screen well from there (even with magnification).

Highs

There are times I really wish my pancreas wasn't so lazy that it couldn't help out JUST A BIT when I'm running high. Especially when I run high for days on end despite increasing basal rates, decreasing carb ratios, and trying to figure out causes.

My average blood sugar today is 10.3 (185 mg/dl), and that is including a random low (that, to add insult to injury, I didn't feel which I HATE). The rest were all high except for this morning when I woke up in range. I've had that icky dry mouth, thirsty feeling all day today and am tired. Well, I've been tired for ... months? I've really over-extended myself in terms of my committments (three part-time teaching jobs, part-time school, and volunteering), I'm really going to have to cut back on that after the summer. Perhaps it's stress. I have been stressed the past week or so.

I don't know if it's hormones, or if my body is trying to fight off one of the five billion bugs floating around the schools, or what. I don't understand why I wake up normal and then am high pretty much the entire day, even when I correct and don't eat for hours. But then, occasionally, a correction will make me go low. And if I happen to be normal and don't eat, I drift downwards. So my blood sugars for the past week or so consist of highs and lows with only a scattering of random readings in range.

I feel like I am completely messed up right now. But yet, a week or two ago things were fairly smooth. I mean I never feel like I have as good control as some people out there, but if the majority of my readings are in range, a few highs and lows are inevitable. I know I probably should be doing some meal-skipping and such ... I wish I could just hit reset and start over. Skipping a meal when you're a teacher is a hard thing to do, I tell you!

And now I should head to bed, still sitting at 11.2 (202 mg/dl), no lower than I was last time I corrected. I wonder whether something could be wrong with the insulin. I have a new vial in the fridge so might scrap my current cartridge and start a new one tomorrow.

Touch and Go

I use four main tools when I travel:

1. Maps. Usually looked at ahead of time because I can't see printed maps that I carry around.
2. My cane. This lets me detect obstacles in short range that I don't see, such as curbs. It also lets those around me know that I can't see well.
3. My monocular. This is a mini telescope that lets me see at a distance, though even with it I can't see as far or clearly as someone with 20/20 vision, and it also has a very narrow field of view.
4. People. Whether by phone or stopping a stranger, a large part of why I get where I'm going is asking for help.

* * *

"Does this bus go to UBC?"

"Sure does."

I climb on. "Can you let me know when we get there?"

"Sure."

Folding my cane I sit up near the driver so that my presence can serve as a reminder to call the stop. I fish my MP3 player out of my purse and plug in, but keep the volume low enough that I could hear if the driver called my stop.

About twenty-five minutes into the ride I'm getting nervous. I don't remember the last trip up to campus taking this long. This is only my second time up there, and I don't yet have a sense of how long the bus ride is.

Just as I'm about to get up and ask the driver whether we've passed my stop, the urban skyline outisde the window suddenly shifts to trees. This is good! The UBC campus entrance has a long stretch of forested area. That part I at least remember.

Five minutes later we pull into the bus loop. I thank the driver.

Climbing off, I pull my monocular from my pocket and scan the landscape. Trees, buses, buildings, roads ... none of it is familar. I know how to get to the Disability Resource Centre from my previous trip, but the rest of the sprawling campus is completely unfamiliar.

Today, I'm on a quest to find the bookstore. Classes start on Monday and I don't have any textbooks for either of the two courses I'm enrolled in.

I stuied an online map in detail yesterday, as best I could with its small, blurry font. I had a vague idea that the bookstore is behind me and to the left. But I'm not totally sure. People rush around me, getting on and off buses, and I decide I can't stand there all day. So, taking a chance that I'm going the right way, I head off into oblivian.

For me, travelling with low vision, it's a small world. I can see buildings fairly far away—dozens of meters. But smaller details—crosswalks, stairs, signs, trees, I can't see until I am a few meters away from them. So, shortly after setting off I come to the end of the bus loop island and, looking around, spot a crosswalk. As luck has it, it's leading in the direction I suspect the bookstore is in. I know from the map, though, that it's still several buildings away, and I have no idea whether I can cut through the swath of concrete and steel to get to it.

Crossing the street, I have no idea which way to walk once I get to the other side. What looks like construction fences are set up, and construction is bad news for anyone who's visually impaired. Something as simple as "going around" a construction site isn't so simple when you don't know which way "around" is.

Thankfully, students pass. Students, on a university campus, know all. (Hopefully, soon, when I was an official student, I will as well!) So I stop one and ask where the bookstore is.

"Uhh ..."

He turns and stops a passing group of girls. "Do you know where the bookstore is? I think it's over there ..."

The girls gladly give rather good directions, although they do include the vaguities of "over there" and "that way" which are difficult to understand when you can only see vaguely in which direction they are pointing. Nonethelsess, I'm reassured that I'm at least heading in the right direction. So I contineued on ...

Down a path ... up some stairs ... past a building. Past a pool. Past a larger pool. I deduce that I must be near the aquatic centre, which I remember seeing on the map in the general vicintiy of the bookstore. This is good.

All the while it's getting steadily darker. With darkness comes less clues, less landmarks, less vision. But for now, I pick up my monocular and scan ahead. I see a street, or maybe a parking lot (something with cars on it, anyway), and then what I decide to be the construction site judging from all the noise it's making. And after that, more buildings and trees. Lovely.

I continue walking. I am suddenly in an open area with stairways going down and paths jutting off to either side. I pick the stairs which point towards the noise of the construction site, where I know from the helpful girls the bookstore is just beyond. Then I come to a road. I can hear the construction site on the other side of the street somewhere, but not close enough to see. Which way to go around?

Again, people. Where there are people, there are directions, and where there are directions I am not lost. I stop a random stranger and ask her where the bookstore is.

"It's across the street, there's construction, and over there are some construction trucks and a parking lot, if you cross that it's kiddy corner to it."

Uhh, sure. I know what all that means. But I at least know it's across the street. I walk up the sidewalk a bit until I find a crosswalk, wait till there's no cars and cross, and then meet a fence. I follow the fence up until I see trucks. Trucks! At least I'm going in the right direction. Past the trucks, through a windy path in a grassy area. She didn't mention that part ... Nonetheless, I continue on. A parking lot.

And then an intersection. I can't quite figure out how the intersection is related to the parking lot. It seems to span the entire two blocks. So what is "kiddy corner" to that parking lot? I cross the street.

And now I know I'm close. Very close. Probably standing in front of it, or across the street from it. I take out my monocular and scan. Signs ... signs ... where does this university put its bloody signs?! I can't find any. A drawback of the monocular is that although it magnifies allowing me to see more distant objects, it does so at the cost of a very narrow field of vision. Now, finally, when I'm probably a few feet away from my destination, I am lost.

Luckily, a jogger spots me. He's probably a kind professor (or so I like to think). He sees me standing there and stops to ask if I need help. I tell him I'm looking for the bookstore.

"Oh, you're really close. It's right—"

"—over there?" I ask, pointing in the direction I think, but am entirely uncertain, that the store is.

"Yes!" I don't understand why he's so happy, but I'm happy to have found that bookstore. "You've got it!"

I thank him and watch briefly as he jogs off. Then, I cross the street.

On the other side I meet an enormous building. Stairs lead up to an upper level, and there is also a lower level. I decide that the entrance must be on the lower level. I continue toward it—

My cane whacks something on the pavement. The sun has long since sunk below the horizon, and features such as pavement and grass are becoming hard to distinguish in the low light. I make to step up, but next my cane drops off the edge of something. Utterly confused I stop so as not to trip over whatever this is. After probing a bit I figure out that this is a set of one of those offset staircases, with stairs coming out of a sloped surface so that they start jaggedly, one starting before another. And for some reason these ones also have a ledge running along the top.

Way to injure someone, I think. Sometimes I really don't get architecture. I go slowly down the stairs. Scan one more time with the monocular for a sign. Momentary excitement when I think I've found one, only to realize that the glowing box is a Coke machine. But I see books through the window.

Enter the bookstore. And at this point I realize that the entire building is a bookstore. This is no small place. The difference between a medium-sized and large university must be really big! I wander among the shelves for a while until I find the area that looks like it's selling textbooks as opposed to sweatshirts or books by university authors. I hear a staff member talking and head towards it, coming to a counter.

I ask the lady to help me find my textbooks. She gets my courses and then runs off to get the books. While she's gone I do another scan with my monocular. INFORMATION is spelled out above the counter, low-contrast blue letters on a grey background. In a few moments she's back. Do I want the study guide for the statistics textbook? I think I'll pass on that until I see how scary the text looks, I'm spending too much money as it is.

To the sound of cashiers. Waiting in line. Someone nips in front of me to go to an empty teller. I step closer so as not to miss the next one. It's so nice when they actually tell me that one is free. I pay for my books and leave.

Outside. Out into the darkness. I'm good at finding my way once I've been somewhere. I'm good at spotting visual landmarks and remembering how things look. I frequently know I'm at the right pole at a bus loop by the way the horizon and trees look against that pole, from a certain angle. It's not conventional orientation and mobility, but it works for me and ensures that I can find my way once I've been somewhere once, at least until I get more concrete landmarks to go by such as counting poles or doors.

But that's in the daytime. At night all that disappears. At night, lights from buildings and streetlamps make things look different. Grass and pavement and steps are indistinguishable until I step on them. Smaller landmarks like poles and garbage cans disappear. My monocular is all but useless.

But again, I know in general which way I need to be headed. I head towards the road. I find the sidewalk and follow it back, around the parking lot. Through a grassy area which doesn't seem the same as before, making me wonder if I've gotten turned around. But then I come to the road with the fence. I follow that back up, cross the road, and come to the wide open space with stairs and paths branching off.

I know I came downstairs, but I have no idea which stiarcase I came down. I thought it had been directly in front of the road but there is no staircase there, so I pick one that seems close.

Walking ... walking. No pool. No larger pool. Little poles with lights that I don't remember seeing—except in the daytime they could have been just little poles that I didn't pay any attention to, and they wouldn't have been lit up.

Walking ... Wondering now if I really am headed the wrong way.

Then: A whiff of chlorine.

Aquatic centre!

I'm going the right way. But where are those pools?

A few seconds later I've somehow ended up in the middle of a parking lot. I try to keep to the side as cars drive by. I can hear buses now beyond this parking lot. Within a few minutes I find another sidewalk and step onto it, continue in the direction of the buses.

I come to a crosswalk, and beyond that an island. I use my monocular to check bus numbers and walk up to one that has 99 glowing beside its door. I wait. Finally the driver opens the door and lets me on.

The bus moves. I wonder why it's completely empty other than me.

As he opens the doors to let everyone else on, he informs me that this is where the bus pole is, a good ten meters away from where I was waiting. And then it's a half hour bus ride to familiar territory. I've asked the driver to call out the stop, but this one I'll be able to recognize on my own by the SkyTrain and bright floodlights of the station.

* * *

An odd thought occured to me today, while semi-lost, that the way I travel is a lot like diabetes management.