That was then. This is now.
March 23, 2009 11:26 AM Subscribe
I am killing myself because I can't get over the past. Please help me take control of my disease.
I was diagnosed with insulin-dependent diabetes ("type 1") at 17, 20 years ago. The lessons I learned then are killing me now, and I'm running out of time to change my life. I don't have any serious complications yet, but I'm way past "pushing my luck" and into "the bill is coming, and it's a killer" territory.
When I was diagnosed, my parents and doctors represented my diagnosis as a cataclysmic end to most of the options in my life: I heard endlessly about what I could no longer do, and the things I could no longer aspire to, from food to life choices. "You can't have ice cream any more" to "you can't try to be an actor, because you won't have health insurance and you have diabetes and have to pay for insulin". I was also subjected to endless stories about the gruesome ways in which I would die if I didn't absolutely regiment my life in every possible way, from diet to exercise.
I was not, to put it lightly, receptive to this line of attack. My reaction was to say "fuck you, I'm going to live my life the way I want and how I want, because I'm not going to imprison myself". Very 17-years-old of me, and very reactive.
The direct consequences of this mindset have been terrible, and are going to become more and more dire if I don't get my shit together. Here are the facts as they currently stand:
This is the attitude of a 17-year-old teenager who had everything taken away from him, combined with the state of late-80's/early 90's diabetes therapy.
That was then. Now, I'm 37 years old, and diabetes treatment is light-years ahead of where it was: I have an insulin pump, I even have access to continuous blood glucose monitoring if I want, and between the two of these things, there is nothing I can't do, almost literally. There are Olympic swimmers with insulin-dependent diabetes. There are firefighters. There are Antarctic explorers.
I need to hear stories, firsthand stories from MeFites, about how you took control of your disease, whether it's diabetes or not. I absolutely do NOT need more stories of life lived at the behest of a disease: I need to know that it's possible to own diabetes and control it without letting the disease control every aspect of my life.
Please help me: I'm stuck at 17, and I have a lot of good-reasons-at-the-time for that, but the way I'm living is killing me. I need help to see the light, and I'm hoping that AskMe readers, who I respect as a group, can help me do that.
update: I'm working with a therapist, a good one, on the issues with how my parents (and doctors) handled the diagnosis. Clearly, there's some psychological holdover there. However, addressing those issues (and they are being addressed productively) isn't getting the job done: I need some positive reinforcement on the disease front.
I was diagnosed with insulin-dependent diabetes ("type 1") at 17, 20 years ago. The lessons I learned then are killing me now, and I'm running out of time to change my life. I don't have any serious complications yet, but I'm way past "pushing my luck" and into "the bill is coming, and it's a killer" territory.
When I was diagnosed, my parents and doctors represented my diagnosis as a cataclysmic end to most of the options in my life: I heard endlessly about what I could no longer do, and the things I could no longer aspire to, from food to life choices. "You can't have ice cream any more" to "you can't try to be an actor, because you won't have health insurance and you have diabetes and have to pay for insulin". I was also subjected to endless stories about the gruesome ways in which I would die if I didn't absolutely regiment my life in every possible way, from diet to exercise.
I was not, to put it lightly, receptive to this line of attack. My reaction was to say "fuck you, I'm going to live my life the way I want and how I want, because I'm not going to imprison myself". Very 17-years-old of me, and very reactive.
The direct consequences of this mindset have been terrible, and are going to become more and more dire if I don't get my shit together. Here are the facts as they currently stand:
- My last HbA1c was 10. That's horrifyingly high, and practically corresponds to uncontrolled diabetes. It needs to be somewhere between 6 and 7.
- I take too much insulin, and it's hurting my weight.
- I am overweight by nearly 80 pounds, and it's not getting much better. The excessive insulin use contributes a lot to this, but so does the basic attitude.
- I'm already hypertensive: maybe it's the weight, maybe it's the diabetes, but either way my heart is paying.
- I've been lucky with my eyes: my eyesight hasn't degenerated in about 20 years, and there's no sign of retinopathy, but if this keeps up, there will be.
This is the attitude of a 17-year-old teenager who had everything taken away from him, combined with the state of late-80's/early 90's diabetes therapy.
That was then. Now, I'm 37 years old, and diabetes treatment is light-years ahead of where it was: I have an insulin pump, I even have access to continuous blood glucose monitoring if I want, and between the two of these things, there is nothing I can't do, almost literally. There are Olympic swimmers with insulin-dependent diabetes. There are firefighters. There are Antarctic explorers.
I need to hear stories, firsthand stories from MeFites, about how you took control of your disease, whether it's diabetes or not. I absolutely do NOT need more stories of life lived at the behest of a disease: I need to know that it's possible to own diabetes and control it without letting the disease control every aspect of my life.
Please help me: I'm stuck at 17, and I have a lot of good-reasons-at-the-time for that, but the way I'm living is killing me. I need help to see the light, and I'm hoping that AskMe readers, who I respect as a group, can help me do that.
update: I'm working with a therapist, a good one, on the issues with how my parents (and doctors) handled the diagnosis. Clearly, there's some psychological holdover there. However, addressing those issues (and they are being addressed productively) isn't getting the job done: I need some positive reinforcement on the disease front.
You originally reacted to this diagnosis by saying you weren't going to let it control your life, but that's exactly what it's ended up doing.
Seek therapy, if not for an impartial ear to unload on, at least so someone can sit down with you to list out the steps you need to take to regain control of your life. Then, take those baby steps and regain control of your life. Once you start accomplishing the smallest of goals it'll snowball.
You've een fucking yourself over for 20 years, so you're not going to turn this around on a dime, but if you don't start sometime you'll never get off this path. Good luck.
posted by spikeleemajortomdickandharryconnickjrmints at 11:33 AM on March 23, 2009
Seek therapy, if not for an impartial ear to unload on, at least so someone can sit down with you to list out the steps you need to take to regain control of your life. Then, take those baby steps and regain control of your life. Once you start accomplishing the smallest of goals it'll snowball.
You've een fucking yourself over for 20 years, so you're not going to turn this around on a dime, but if you don't start sometime you'll never get off this path. Good luck.
posted by spikeleemajortomdickandharryconnickjrmints at 11:33 AM on March 23, 2009
Mod note: added small update to end of post at OPs request
posted by jessamyn (staff) at 11:38 AM on March 23, 2009
posted by jessamyn (staff) at 11:38 AM on March 23, 2009
Hi, I'm 38 and have Type II Diabetes, diagnosed about 5 years go.
It's really simple and you have a choice. Either you can live like you don't have diabetes and suffer the consequences or you could make changes and then have some sort of pain-free life.
Take baby steps. Concentrate on getting one meal right, say breakfast and getting that under control. Then move to another and another, 'till you've got reasonable control. Then you can go back and refine control and work harder over all.
Here's the truth and at some point you're going to have learn it, either on your death bed or one sunny day after you've been eating reasonably and realizing you've felt better than you have in a long time: Diabetes does control your life. It can control it so much it can make you miserable and kill you. You don't have to accept that or believe it, but it that won't matter, it'll still fuck you if you don't get some control and accept the reality of your disease.
If you got more specific questions about coping with the day to day struggle, feel free to ask.
posted by Brandon Blatcher at 11:53 AM on March 23, 2009
It's really simple and you have a choice. Either you can live like you don't have diabetes and suffer the consequences or you could make changes and then have some sort of pain-free life.
Take baby steps. Concentrate on getting one meal right, say breakfast and getting that under control. Then move to another and another, 'till you've got reasonable control. Then you can go back and refine control and work harder over all.
Here's the truth and at some point you're going to have learn it, either on your death bed or one sunny day after you've been eating reasonably and realizing you've felt better than you have in a long time: Diabetes does control your life. It can control it so much it can make you miserable and kill you. You don't have to accept that or believe it, but it that won't matter, it'll still fuck you if you don't get some control and accept the reality of your disease.
If you got more specific questions about coping with the day to day struggle, feel free to ask.
posted by Brandon Blatcher at 11:53 AM on March 23, 2009
At 24 I was diagnosed with heart disease that had nearly killed me. According to my doctors I was literally days away from death when I was hospitalized. I was in the hospital for 5 days and was sent home as weak as a kitten; I literally couldn't make it the 10 feet to the bathroom without graying out and leaning on the wall for support.
The medications for the disease actually mimic some of the symptoms -- so even as I was getting healthier, I was still massively fatigued and had serious hypotension. My doctors were willing to take it slow on increasing my dosage so I'd have time to get over the side effects between rounds, but I refused. I pushed for the highest dosage possible, the fastest possible. My attitude was actually fairly reactive, as yours was, but I rebelled in a different direction. Instead of "fuck you, I'm not going to imprison myself", I said, "fuck you, heart failure! I'll do what I want and show you who's boss!"
After a couple of months at home, when I could sit up on the couch some of the time (instead of lying down almost all of the time), I started exercising. I used a one pound weight -- seriously, one pound. And I walked on the treadmill. The first time I got back on the treadmill after being sick I walked for 2 minutes at 1 mph. When I got off I was red-faced and breathing hard. It really sucked. But I got back on the next day and did 2 minutes 15 seconds, and so forth. Within a couple of months I could walk for a half hour at 2 or 2.5 mph -- a whole mile!
I was diagnosed in January after having been sick for about 6 months. 9 months after my diagnosis I flew to California to go to a friend's wedding; a year and 2 months after my diagnosis I was in New York with another friend to see a Broadway show (and stalk a favorite celebrity in the freezing cold).
My disease is one that normally happens to old people. My doctors only expect me to do things that old people do. They're somewhat dismissive when I'm unhappy about not being able to do things people my age do without thinking about -- like playing intramural softball at my law school. But I rebelled against them and against the disease. It wasn't the most mature reaction, but it's worked out well for me so far. You might do better to think of diabetes as an enemy to fight, by any means necessary, rather than rebelling against having to deal with it at all.
Oh, also -- therapy is probably not a bad idea. Another idea is a personal trainer. After about a year working out on my own I went to a trainer who had experience with rehabilitation after disease. She was great at helping me start slow, figuring out what was safe and what to build up to. I haven't been in a while since I can't afford it right now, but the last time I was there I was lifting the maximum allowed by my docs (35 pounds) and doing hour-long workouts with 15 minutes of cardio beforehand.
posted by katemonster at 11:53 AM on March 23, 2009 [1 favorite]
The medications for the disease actually mimic some of the symptoms -- so even as I was getting healthier, I was still massively fatigued and had serious hypotension. My doctors were willing to take it slow on increasing my dosage so I'd have time to get over the side effects between rounds, but I refused. I pushed for the highest dosage possible, the fastest possible. My attitude was actually fairly reactive, as yours was, but I rebelled in a different direction. Instead of "fuck you, I'm not going to imprison myself", I said, "fuck you, heart failure! I'll do what I want and show you who's boss!"
After a couple of months at home, when I could sit up on the couch some of the time (instead of lying down almost all of the time), I started exercising. I used a one pound weight -- seriously, one pound. And I walked on the treadmill. The first time I got back on the treadmill after being sick I walked for 2 minutes at 1 mph. When I got off I was red-faced and breathing hard. It really sucked. But I got back on the next day and did 2 minutes 15 seconds, and so forth. Within a couple of months I could walk for a half hour at 2 or 2.5 mph -- a whole mile!
I was diagnosed in January after having been sick for about 6 months. 9 months after my diagnosis I flew to California to go to a friend's wedding; a year and 2 months after my diagnosis I was in New York with another friend to see a Broadway show (and stalk a favorite celebrity in the freezing cold).
My disease is one that normally happens to old people. My doctors only expect me to do things that old people do. They're somewhat dismissive when I'm unhappy about not being able to do things people my age do without thinking about -- like playing intramural softball at my law school. But I rebelled against them and against the disease. It wasn't the most mature reaction, but it's worked out well for me so far. You might do better to think of diabetes as an enemy to fight, by any means necessary, rather than rebelling against having to deal with it at all.
Oh, also -- therapy is probably not a bad idea. Another idea is a personal trainer. After about a year working out on my own I went to a trainer who had experience with rehabilitation after disease. She was great at helping me start slow, figuring out what was safe and what to build up to. I haven't been in a while since I can't afford it right now, but the last time I was there I was lifting the maximum allowed by my docs (35 pounds) and doing hour-long workouts with 15 minutes of cardio beforehand.
posted by katemonster at 11:53 AM on March 23, 2009 [1 favorite]
This is not a story about diabetes, but it is a story about addiction and turning your life around. I had a boss who at 17 was a drunk riding the rails. Alcohol WAS his life - all that he was living for. It gave him a feeling that he never had before drinking and made him feel complete in a strange sort of way. Sometime in his early 20s he ended up before a judge who said that he could straighten up or go to jail. Straightening up was NOT easy. He had to work hard, he had to have people help him (AA sponsorship) and he had to leave behind his friends who were still drinking. He relapsed. He got sober again. He found honest work, started helping other people and ended up becoming a very respected person in the community.
It sounds like you need to do some very similar things. You have already started - you realize that you have a problem and that you are the only one who can fix it. You could probably benefit from some support classes - see if your local hospital offers any. Listen to what other people have to say - you are not the only person who has gone the route that you have. Explain to family and friends what you need and ask them to support you. If they don't support you, leave them behind and find some new friends that will help you maintain your health. Listen to the advise of people who know what they are talking about medically and follow through, not because you have to, but because it is the smart thing to do and you are a smart person. Once you get on track, use what you know to help other people make the changes that you did. Don't fret if you occasionally backslide - the best of us do, but that doesn't mean that you don't try to do better next time.
Good luck - and remember, you are already part way to your goal.
wife of 445supermag
posted by 445supermag at 12:01 PM on March 23, 2009
It sounds like you need to do some very similar things. You have already started - you realize that you have a problem and that you are the only one who can fix it. You could probably benefit from some support classes - see if your local hospital offers any. Listen to what other people have to say - you are not the only person who has gone the route that you have. Explain to family and friends what you need and ask them to support you. If they don't support you, leave them behind and find some new friends that will help you maintain your health. Listen to the advise of people who know what they are talking about medically and follow through, not because you have to, but because it is the smart thing to do and you are a smart person. Once you get on track, use what you know to help other people make the changes that you did. Don't fret if you occasionally backslide - the best of us do, but that doesn't mean that you don't try to do better next time.
Good luck - and remember, you are already part way to your goal.
wife of 445supermag
posted by 445supermag at 12:01 PM on March 23, 2009
My condition, chronic migraines, is hardly as serious or life threatening as yours, but it casts a shadow over my life and has forced me to make serious lifestyle choices.
Smoking, over-consumption of caffeine, any form of alcohol, and lack of sleep caused by (among other things) heavy dinners are near-guaranteed triggers of migraines. As is lack of exercise.
Here's the way I rationalize it. All of the fun things that I avoid have the side benefit of improving my health. They're not lifestyle compromises. They're things healthy people would do anyway.
Many of the lifestyle choices connected to your diabetes seem to be negative ones in general. Can you put a positive spin on them? In some ways (but not all, of course) diabetes is enforcing a positive, healthful lifestyle for you. And that's a good thing.
posted by Gordion Knott at 12:01 PM on March 23, 2009
Smoking, over-consumption of caffeine, any form of alcohol, and lack of sleep caused by (among other things) heavy dinners are near-guaranteed triggers of migraines. As is lack of exercise.
Here's the way I rationalize it. All of the fun things that I avoid have the side benefit of improving my health. They're not lifestyle compromises. They're things healthy people would do anyway.
Many of the lifestyle choices connected to your diabetes seem to be negative ones in general. Can you put a positive spin on them? In some ways (but not all, of course) diabetes is enforcing a positive, healthful lifestyle for you. And that's a good thing.
posted by Gordion Knott at 12:01 PM on March 23, 2009
Well, it's not exactly first-hand, but it's my brother's story and I'm damned proud of him.
He has insulin-dependent diabetes and it almost killed him fifteen years ago. He didn't know what was wrong and wouldn't go to the doctor to find out. When we all finally convinced him to see someone, he got the diagnosis. Instead of flipping out and ignoring it, which is what we all thought he'd do, he took charge. He learned everything he could about diabetes. He got second and third opinions. He found a specialist willing to work with him to figure out how he could live the best possible life with diabetes. He now has a pump and he's done more than a dozen Ironman triathalons. He and his wife travel as much as they can. He went back to school and got his masters degree in social work and he loves his job. He lives his life. I really think the diabetes diagnosis ultimately saved his life, not only because he finally got the treatment he needed, but because he finally woke up and realized he had one shot at this living thing and he was going to cram as much living into his life as he possibly could.
My brother hasn't compromised his lifestyle. On the contrary, he's benefited tremendously from being conscious about the disease and how to control it.
posted by cooker girl at 12:01 PM on March 23, 2009
He has insulin-dependent diabetes and it almost killed him fifteen years ago. He didn't know what was wrong and wouldn't go to the doctor to find out. When we all finally convinced him to see someone, he got the diagnosis. Instead of flipping out and ignoring it, which is what we all thought he'd do, he took charge. He learned everything he could about diabetes. He got second and third opinions. He found a specialist willing to work with him to figure out how he could live the best possible life with diabetes. He now has a pump and he's done more than a dozen Ironman triathalons. He and his wife travel as much as they can. He went back to school and got his masters degree in social work and he loves his job. He lives his life. I really think the diabetes diagnosis ultimately saved his life, not only because he finally got the treatment he needed, but because he finally woke up and realized he had one shot at this living thing and he was going to cram as much living into his life as he possibly could.
My brother hasn't compromised his lifestyle. On the contrary, he's benefited tremendously from being conscious about the disease and how to control it.
posted by cooker girl at 12:01 PM on March 23, 2009
I won't go into specifics, but I have what one can easily term a "lifestyle restrictive" metabolic disorder. I have a long list of things which are associated with a high probability of being miserable. Sometimes, those things do not make me miserable; sometimes, those things will make me miserable in short order. Other things have a long-term negative payout: If I keep that up, this will happen. It will happen by degrees, and I will not like it when I suddenly realize I am there.
The first thing is to write down the things you should not do if you want to not be miserable. Some things are obvious; some things are not obvious, and you will discover them only after a pattern emerges. Those latter items are the easiest for me to forget about. It may take a hospital visit or two for me to say, "Haha, yeah, uh ... maybe I shouldn't do that anymore if I want to be in my own bed, versus a hospital bed."
Writing these items down in a list and then reading the list on a regular basis is a good way to reinforce that one ought not to do them. "Ought" is not a very useful word if there is nothing after it. So, next, write down in a new column to the right the consequences of what happens if you do these things.
Sometimes, that is not enough. Obtain a medical textbook and scan for those gruesome color plates. This is what happens when I overlook the "little things." Add these pictures to the list of things you have to skip.
Of course, the negatives will only get you so far. If you don't eat that ice cream sundae, and you have convinced yourself not to eat that ice cream sundae, that is a good thing ... right until you decide to have a banana split instead. That means focusing on the things you can do (versus the things you "ought not" to do), and associating positive rewards with these. This is your To Do list and it can help with your Not To Do list. If you're chock full of broccoli, it will be hard to muster up the appetite for greasy fast food. If you're exercising, you're probably not at a restaurant.
That list should also have a column stating the rewards, and pictures can help there, too. As something to which you may look forward, Photoshop your head onto the body of someone who is wearing swim trunks. Just not a Speedo, nobody should be wearing those, 'kay?
Self-reinforcement without external measurement is doomed when pitted against the endless human capacity for self-delusion. That means things you can measure: weight. Blood pressure from a home blood pressure kit. Glucose levels. Measure these things often, write them down, and more importantly, put forth hypotheses as to why you are attaining your goals or what has caused you to slip. One of the most successful weight loss studies did not involve a particular diet so much as it was that the participants weighed themselves four times per day. Hence, measure often, speculate freely, and do little experiments on yourself. Go digital whenever possible with any measurement; it's harder for you to fudge.
Devising your own demerits and punishments for slipups is only required for those things where you have both the long-term "death by degrees" and a pattern of eluding your grasp. As to the rewards, the best rewards put you in a place to achieve more, not take you back. If you get down to a weight with a 0 on the end of it, a pizza is not a good reward; a brisk walk in a new location is. When you're down forty pounds, reward yourself with a gym membership, rather than giving yourself the expectation right up front ("I look much better naked now; I can take off my clothes in front of strangers without embarrassment, and screw anyone who judges me."). "I just walked three miles in forty-five minutes; when I level up, will I go faster, or further?"
Whenever people do something That Ain't Right for a Very Long Time, they develop an investment in it. You've had twenty years investment in the way you're living; admitting you have twenty years of Wrong! is very tough. It is easy to feel like you have wasted time, so you might as well continue on with what you've been doing. That's the kind of issue you'll want to bring to your therapist.
To sum up, you're not going to just learn about how to get your insulin down, you're going to have to learn about yourself in a grand series of experiments involving both your physical health and your personal psychology. Additionally, the insight you gain will help you in other facets of your life, as well.
Good luck.
posted by adipocere at 12:17 PM on March 23, 2009 [1 favorite]
The first thing is to write down the things you should not do if you want to not be miserable. Some things are obvious; some things are not obvious, and you will discover them only after a pattern emerges. Those latter items are the easiest for me to forget about. It may take a hospital visit or two for me to say, "Haha, yeah, uh ... maybe I shouldn't do that anymore if I want to be in my own bed, versus a hospital bed."
Writing these items down in a list and then reading the list on a regular basis is a good way to reinforce that one ought not to do them. "Ought" is not a very useful word if there is nothing after it. So, next, write down in a new column to the right the consequences of what happens if you do these things.
Sometimes, that is not enough. Obtain a medical textbook and scan for those gruesome color plates. This is what happens when I overlook the "little things." Add these pictures to the list of things you have to skip.
Of course, the negatives will only get you so far. If you don't eat that ice cream sundae, and you have convinced yourself not to eat that ice cream sundae, that is a good thing ... right until you decide to have a banana split instead. That means focusing on the things you can do (versus the things you "ought not" to do), and associating positive rewards with these. This is your To Do list and it can help with your Not To Do list. If you're chock full of broccoli, it will be hard to muster up the appetite for greasy fast food. If you're exercising, you're probably not at a restaurant.
That list should also have a column stating the rewards, and pictures can help there, too. As something to which you may look forward, Photoshop your head onto the body of someone who is wearing swim trunks. Just not a Speedo, nobody should be wearing those, 'kay?
Self-reinforcement without external measurement is doomed when pitted against the endless human capacity for self-delusion. That means things you can measure: weight. Blood pressure from a home blood pressure kit. Glucose levels. Measure these things often, write them down, and more importantly, put forth hypotheses as to why you are attaining your goals or what has caused you to slip. One of the most successful weight loss studies did not involve a particular diet so much as it was that the participants weighed themselves four times per day. Hence, measure often, speculate freely, and do little experiments on yourself. Go digital whenever possible with any measurement; it's harder for you to fudge.
Devising your own demerits and punishments for slipups is only required for those things where you have both the long-term "death by degrees" and a pattern of eluding your grasp. As to the rewards, the best rewards put you in a place to achieve more, not take you back. If you get down to a weight with a 0 on the end of it, a pizza is not a good reward; a brisk walk in a new location is. When you're down forty pounds, reward yourself with a gym membership, rather than giving yourself the expectation right up front ("I look much better naked now; I can take off my clothes in front of strangers without embarrassment, and screw anyone who judges me."). "I just walked three miles in forty-five minutes; when I level up, will I go faster, or further?"
Whenever people do something That Ain't Right for a Very Long Time, they develop an investment in it. You've had twenty years investment in the way you're living; admitting you have twenty years of Wrong! is very tough. It is easy to feel like you have wasted time, so you might as well continue on with what you've been doing. That's the kind of issue you'll want to bring to your therapist.
To sum up, you're not going to just learn about how to get your insulin down, you're going to have to learn about yourself in a grand series of experiments involving both your physical health and your personal psychology. Additionally, the insight you gain will help you in other facets of your life, as well.
Good luck.
posted by adipocere at 12:17 PM on March 23, 2009 [1 favorite]
I'm reminded of something I saw years ago, about a world traveler complaining about how his new child was going to cramp his travel lifestyle. The response was that he could do everything he did before, it would just take a little more planning and organization.
You need to internalize the idea that accommodating your treatment isn't compromising your control of your life, it's controlling your life. By dealing properly and well with diabetes, you're enabling yourself to live a proper life and do what you want. You need to flip the preconceived notion in your head that the disease is controlling you through treatment, to the belief that you're controlling the disease by treating it.
posted by fatbird at 12:26 PM on March 23, 2009 [2 favorites]
You need to internalize the idea that accommodating your treatment isn't compromising your control of your life, it's controlling your life. By dealing properly and well with diabetes, you're enabling yourself to live a proper life and do what you want. You need to flip the preconceived notion in your head that the disease is controlling you through treatment, to the belief that you're controlling the disease by treating it.
posted by fatbird at 12:26 PM on March 23, 2009 [2 favorites]
I have type 1. My body is a car that used to have a sweet automatic transmission that totally fucking crapped out on me, and has now been replaced by a somewhat dodgy stick shift. (I also use an insulin pump.) All that smooth shifting I used to take for granted is now my problem, which can make driving mighty annoying, and even quite dangerous at times.
I deal with the disease by riding my bike. I've ridden my bike for a hundred miles through Death Valley. I've ridden my bike up hills that made other, non-diabetic cyclists get off and walk. Two days ago I rode my bike 60 miles to another state and back. My body is a manual transmission; my bike is a manual transmission. There's satisfaction in getting these machines to perform the way I want.
That said, there's only so far you can "take control" of the disease, as others have suggested. To switch metaphors, it's kind of like being stuck under some asshole boss who is always hounding you dozens of times a day with trivial yet necessary tasks and obligations that make it hard to focus on more important stuff. And when you've displeased him, even though through no fault of your own, he throws you an episode of hypoglycemia, where your brain has all the confusion of being very drunk but none of the pleasure. Oh, and by the way, it's also a job you can't quit. Anyway, you can't really take control of a boss like that, no matter how much you might like to - but you can develop strategies for negotiating.
The way you write about the disease is reason for hope. It sounds like at least now you have a healthy amount of self-awareness about the bad habits (of thought and otherwise) that you have built up over the years, and even if those habits are hard to break, that's a necessary start.
As much as comments from strangers on the internet can be helpful, one thing that might help you continue your progress is in-person support, either from doctors/nurses/nutritionists, or even better from diabetics themselves who live with this every minute of every day and who share your struggles and frustrations. It's great that you're seeing a therapist, but there's no substitute for talking shop.
posted by chinston at 12:42 PM on March 23, 2009 [2 favorites]
I deal with the disease by riding my bike. I've ridden my bike for a hundred miles through Death Valley. I've ridden my bike up hills that made other, non-diabetic cyclists get off and walk. Two days ago I rode my bike 60 miles to another state and back. My body is a manual transmission; my bike is a manual transmission. There's satisfaction in getting these machines to perform the way I want.
That said, there's only so far you can "take control" of the disease, as others have suggested. To switch metaphors, it's kind of like being stuck under some asshole boss who is always hounding you dozens of times a day with trivial yet necessary tasks and obligations that make it hard to focus on more important stuff. And when you've displeased him, even though through no fault of your own, he throws you an episode of hypoglycemia, where your brain has all the confusion of being very drunk but none of the pleasure. Oh, and by the way, it's also a job you can't quit. Anyway, you can't really take control of a boss like that, no matter how much you might like to - but you can develop strategies for negotiating.
The way you write about the disease is reason for hope. It sounds like at least now you have a healthy amount of self-awareness about the bad habits (of thought and otherwise) that you have built up over the years, and even if those habits are hard to break, that's a necessary start.
As much as comments from strangers on the internet can be helpful, one thing that might help you continue your progress is in-person support, either from doctors/nurses/nutritionists, or even better from diabetics themselves who live with this every minute of every day and who share your struggles and frustrations. It's great that you're seeing a therapist, but there's no substitute for talking shop.
posted by chinston at 12:42 PM on March 23, 2009 [2 favorites]
OP:
This is the attitude of a 17-year-old teenager who had everything taken away from him...
Anonymous, with all the love in my heart, bull-fucking-shit. You had bad parents, and bad medical news, and possibly some misinformation. That's all.
You are, and always have been, in charge of you. You are not, and never have been, in control of anything else.
Get serious about your therapy. Get a tougher, better, more-in-touch therapist, if every single session doesn't push you. Get better meds to help you with the process.
Oh, and continue getting more proactive about your diabetes. You're clearly on the right path here, and with regards to your childhood, too.
Best of luck. Time to start fighting for you, as though you were your #1 fan, best friend, and only hope. Cuz you are.
posted by IAmBroom at 1:30 PM on March 23, 2009 [1 favorite]
This is the attitude of a 17-year-old teenager who had everything taken away from him...
Anonymous, with all the love in my heart, bull-fucking-shit. You had bad parents, and bad medical news, and possibly some misinformation. That's all.
You are, and always have been, in charge of you. You are not, and never have been, in control of anything else.
Get serious about your therapy. Get a tougher, better, more-in-touch therapist, if every single session doesn't push you. Get better meds to help you with the process.
Oh, and continue getting more proactive about your diabetes. You're clearly on the right path here, and with regards to your childhood, too.
Best of luck. Time to start fighting for you, as though you were your #1 fan, best friend, and only hope. Cuz you are.
posted by IAmBroom at 1:30 PM on March 23, 2009 [1 favorite]
Maybe you should shift the focus of your therapy to productive habits and coping mechanisms for now and the future rather than dwelling on the past. That's the recommended therapy for recently-diagnosed diabetics (generally bundled with nutritional/lifestyle counseling), and while you can't undo the physical and emotional damage of the past, you can be a born-again diabetic any time you choose. In my life, the only way out of shame spirals has been to look forward and leave the introspection out of it until things are more stable and secure. By that point, looking back will be much more about forgiveness and understanding than trying to undo something that can't be undone.
Work the problem, look to be a modern person with diabetes (rather than the death-sentenced diabetic your parents imagined, because that was the reality they knew and they were scared), celebrate your progress, live well. That's how anybody gets through a serious crisis, disease or otherwise.
posted by Lyn Never at 2:59 PM on March 23, 2009
Work the problem, look to be a modern person with diabetes (rather than the death-sentenced diabetic your parents imagined, because that was the reality they knew and they were scared), celebrate your progress, live well. That's how anybody gets through a serious crisis, disease or otherwise.
posted by Lyn Never at 2:59 PM on March 23, 2009
I can't speak to living with diabetes, but I know from being unwilling to exercise. Not 'unable' - almost no one is 'unable' to exercise. I mean unwilling.
Leave aside all the baggage, the 'I am my disease' shit, the 'my parents fucked me up' narrative that's perversely appealing to almost everyone (because it means the moment of responsibility has passed). What there is, in part, is: among other things, you know you should exercise but you don't.
But you can. Not in the 'You can do anything!' sense, that's bullshit and we all know it, but in the 'If you don't exercise then any amount of physical labour will help you' sense. What you need to do is way, way, way easier than you realize, and it will pay dividends immediately, and it will help you see further and consider other seemingly-impossible tasks to be quite doable.
For instance:
If you don't do any arm/chest exercises, try doing some pushups. Can't? No problem, plenty of people can't. Start with decline pushups (arms on couch, feet on floor). Can't do that either? OK. Lie on your back, grab the Complete Arden Shakespeare and the Riverside Milton and bench press 'em. They weigh little but then you probably lift little, right? OK. Can't do a situp? Fuck it, me neither. Grab a bag of books in each arm and do some slow, slow twists to each side. Curl your arms. Squat as deep as you can and come up slow. Reward yourself by reading the book with the most sex in it. (No, not goddamn Clan of the Cave Bear, you said yourself you're not 17 anymore...)
What about running? Well, running's fucking difficult. Do you walk to work? Walk up stairs? Stop taking the elevator. Seriously: Just stop. It sucks for a week beyond the telling of it, then all of a sudden it doesn't suck anymore. It just stops being bad. Not at a point, but in passing.
That's how change happens.
Knees hurt because of the extra weight? Hey, you and me both. Try an exercise bike or an elliptical machine - smooth circular motions are perfect for fat guys like me.
You're more flexible when you're warmed up - get a sweat going, stretch yourself out a little bit. Feel good? Among other oddities, you really do associate memories (psychic tension) with physical tension. Work out some physical kinks - I'm serious - and you'll see emotional blocks start to slip away. Not that you don't need therapy, baby, but you need this too.
Exercise only makes things better. Moving around, escaping from gazelles, jumping across bubbling lava pits, swinging from vines - that's what our bodies were built for. Your heart is a muscle and you need to stretch it and strengthen it. Start small, endure discomfort.
You don't have to 'change your life' - you only have to change your habits. Your life is what the habits make room for. It's the melody, not the chords.
When you make everything into this grand 'I'm dying of lack of life' narrative you think you're seeing the forest despite the trees - but you don't climb the forest. You don't pick apples from a forest. Life isn't the category but the thing. Get a couple days of physical exercise - thirty minutes a day, no problem - under your belt and forget about what your Self is supposed to be.
Sorry if this sounds pitiless. It's meant as encouragement. On the other hand, pity isn't going to get you thin and happy. Neither is encouragement, come to think of it.
posted by waxbanks at 3:27 PM on March 23, 2009 [6 favorites]
Leave aside all the baggage, the 'I am my disease' shit, the 'my parents fucked me up' narrative that's perversely appealing to almost everyone (because it means the moment of responsibility has passed). What there is, in part, is: among other things, you know you should exercise but you don't.
But you can. Not in the 'You can do anything!' sense, that's bullshit and we all know it, but in the 'If you don't exercise then any amount of physical labour will help you' sense. What you need to do is way, way, way easier than you realize, and it will pay dividends immediately, and it will help you see further and consider other seemingly-impossible tasks to be quite doable.
For instance:
If you don't do any arm/chest exercises, try doing some pushups. Can't? No problem, plenty of people can't. Start with decline pushups (arms on couch, feet on floor). Can't do that either? OK. Lie on your back, grab the Complete Arden Shakespeare and the Riverside Milton and bench press 'em. They weigh little but then you probably lift little, right? OK. Can't do a situp? Fuck it, me neither. Grab a bag of books in each arm and do some slow, slow twists to each side. Curl your arms. Squat as deep as you can and come up slow. Reward yourself by reading the book with the most sex in it. (No, not goddamn Clan of the Cave Bear, you said yourself you're not 17 anymore...)
What about running? Well, running's fucking difficult. Do you walk to work? Walk up stairs? Stop taking the elevator. Seriously: Just stop. It sucks for a week beyond the telling of it, then all of a sudden it doesn't suck anymore. It just stops being bad. Not at a point, but in passing.
That's how change happens.
Knees hurt because of the extra weight? Hey, you and me both. Try an exercise bike or an elliptical machine - smooth circular motions are perfect for fat guys like me.
You're more flexible when you're warmed up - get a sweat going, stretch yourself out a little bit. Feel good? Among other oddities, you really do associate memories (psychic tension) with physical tension. Work out some physical kinks - I'm serious - and you'll see emotional blocks start to slip away. Not that you don't need therapy, baby, but you need this too.
Exercise only makes things better. Moving around, escaping from gazelles, jumping across bubbling lava pits, swinging from vines - that's what our bodies were built for. Your heart is a muscle and you need to stretch it and strengthen it. Start small, endure discomfort.
You don't have to 'change your life' - you only have to change your habits. Your life is what the habits make room for. It's the melody, not the chords.
When you make everything into this grand 'I'm dying of lack of life' narrative you think you're seeing the forest despite the trees - but you don't climb the forest. You don't pick apples from a forest. Life isn't the category but the thing. Get a couple days of physical exercise - thirty minutes a day, no problem - under your belt and forget about what your Self is supposed to be.
Sorry if this sounds pitiless. It's meant as encouragement. On the other hand, pity isn't going to get you thin and happy. Neither is encouragement, come to think of it.
posted by waxbanks at 3:27 PM on March 23, 2009 [6 favorites]
Wow. I am so sorry this happened to you -- and I don't necessarily mean the diabetes. I'm sorry you were diagnosed at a time when the going medical wisdom was to scare and threaten people into compliance. It was wrong of them to do that to you. Anyone would have a hard time getting over that.
I don't have diabetes myself, so I can't give you a first-hand story of what I went through. But I did work for a while in a diabetes clinic, and I got to know lots of people's stories about what they went through and what they struggled with after their diagnosis. And I don't mean this to sound as though your current condition is no big deal and you shouldn't worry about it, but your list of complications thus far is pretty manageable. You are still young. It sounds like you are in decent health. You are taking up this project -- that is, choosing to actively manage your health -- at a really good time. Your risks are higher than average, true; but you still have so much time and so many possibilities before you. I'm glad you're working on this, and I hope you give yourself full credit for that. You have no idea how many people I've seen in much, much worse shape than you who were able to make important improvements to their health and quality of life.
In my experience, it is pretty ineffective for people to try to motivate themselves to do anything, even for the sake of their health, out of fear. That threatening and scare-tactic crap people laid on you at 17 is something you are now still doing to yourself if I'm interpreting your words correctly. It sounds like, in your effort to Take This Seriously, you are reverting to almost the same scare tactics that didn't help you when you were younger. And if you're anything like me, personality-wise, your internal rebellion against this will be strong and visceral.
Philosophically speaking, I think there are two important things to consider: 1) there are some things about you that just are. They are facts, and they are unchangeable. One of these facts is that you have diabetes, and you require insulin to survive. You just do. Nothing about this is going to change -- it is now part of you who you are. And, from a moral perspective, it is neither "good" nor "bad" inherently. It just is. To use a colloquialism, this is part of the hand you've been dealt. 2) Even though you can't change what cards you've been dealt, you DO get to decide how you're going to play them. (And you know this already.)
Having diabetes was never your idea, but what stands before you right here, right now, is really a choice -- a choice very similar to the choice even people without diabetes must make: to look after your physical and mental health in a way that will improve your chances of living a longer and happier life, or to abandon that wholly, ignore your physical health, pretend it's not an issue, and let the chips fall where they may. It may not sound like the greatest choice, but it is still a choice, and both of those options are legitimate ways that people can (and do) go about living their lives. It sounds as though, in the past, you have chosen the latter. It also sounds like you are now considering revising that choice.
If you want to do this, I believe you need to connect your new behaviours to an immediate and gratifying consequence. In other words, you need to find out why you WANT to do those things, in the most id-heavy reading of the word "want." Aside from all the nebulous, far-reaching concerns about future health risk and all those boogeymen diseases and conditions you could wind up with, there are REAL, CONCRETE, IMMEDIATE reasons you have for wanting to improve your sugars. Crazy sugars make you feel like crap, frankly, whether they're high or low. Maybe you get sleepy, or headachey, or cranky. Notice this. Conversely, make a concerted effort -- maybe start a journal -- to notice how you feel on days when you manage well. Those good feelings are your natural reward for behaviours that are good for you in the long run. It feels GOOD to get some exercise that isn't boring or too hard on your body. It feels GOOD to eat three nourishing meals in a day. If what you're doing for the sake of your health doesn't also come with good feelings in the right now, then you're doing something wrong. Back up and try something else until it does feel good -- or there's no way you'll sustain it.
I really hope this makes sense. I am also really glad you asked this question. I think it shows, on top of your actively working in therapy, that you're really wanting to do this. Provided you keep yourself wanting to do the things that are ultimately to your advantage, I think you will be successful. What you're doing is important, because it's more than just about "reducing my health risk by modifying x, y, and z factors." You are learning to take care of yourself, which is an expression of self-love and self-respect. You are doing yourself -- not just your body -- a great kindness. This isn't about doing what your parents or the doctors tell you to do, and it isn't about running away from fear. You're a grown-up now -- you can do whatever the hell you want to do. And you're choosing to make friends with yourself, and to live the best life you can with what you've got. Best of luck.
posted by peggynature at 4:20 PM on March 23, 2009
I don't have diabetes myself, so I can't give you a first-hand story of what I went through. But I did work for a while in a diabetes clinic, and I got to know lots of people's stories about what they went through and what they struggled with after their diagnosis. And I don't mean this to sound as though your current condition is no big deal and you shouldn't worry about it, but your list of complications thus far is pretty manageable. You are still young. It sounds like you are in decent health. You are taking up this project -- that is, choosing to actively manage your health -- at a really good time. Your risks are higher than average, true; but you still have so much time and so many possibilities before you. I'm glad you're working on this, and I hope you give yourself full credit for that. You have no idea how many people I've seen in much, much worse shape than you who were able to make important improvements to their health and quality of life.
In my experience, it is pretty ineffective for people to try to motivate themselves to do anything, even for the sake of their health, out of fear. That threatening and scare-tactic crap people laid on you at 17 is something you are now still doing to yourself if I'm interpreting your words correctly. It sounds like, in your effort to Take This Seriously, you are reverting to almost the same scare tactics that didn't help you when you were younger. And if you're anything like me, personality-wise, your internal rebellion against this will be strong and visceral.
Philosophically speaking, I think there are two important things to consider: 1) there are some things about you that just are. They are facts, and they are unchangeable. One of these facts is that you have diabetes, and you require insulin to survive. You just do. Nothing about this is going to change -- it is now part of you who you are. And, from a moral perspective, it is neither "good" nor "bad" inherently. It just is. To use a colloquialism, this is part of the hand you've been dealt. 2) Even though you can't change what cards you've been dealt, you DO get to decide how you're going to play them. (And you know this already.)
Having diabetes was never your idea, but what stands before you right here, right now, is really a choice -- a choice very similar to the choice even people without diabetes must make: to look after your physical and mental health in a way that will improve your chances of living a longer and happier life, or to abandon that wholly, ignore your physical health, pretend it's not an issue, and let the chips fall where they may. It may not sound like the greatest choice, but it is still a choice, and both of those options are legitimate ways that people can (and do) go about living their lives. It sounds as though, in the past, you have chosen the latter. It also sounds like you are now considering revising that choice.
If you want to do this, I believe you need to connect your new behaviours to an immediate and gratifying consequence. In other words, you need to find out why you WANT to do those things, in the most id-heavy reading of the word "want." Aside from all the nebulous, far-reaching concerns about future health risk and all those boogeymen diseases and conditions you could wind up with, there are REAL, CONCRETE, IMMEDIATE reasons you have for wanting to improve your sugars. Crazy sugars make you feel like crap, frankly, whether they're high or low. Maybe you get sleepy, or headachey, or cranky. Notice this. Conversely, make a concerted effort -- maybe start a journal -- to notice how you feel on days when you manage well. Those good feelings are your natural reward for behaviours that are good for you in the long run. It feels GOOD to get some exercise that isn't boring or too hard on your body. It feels GOOD to eat three nourishing meals in a day. If what you're doing for the sake of your health doesn't also come with good feelings in the right now, then you're doing something wrong. Back up and try something else until it does feel good -- or there's no way you'll sustain it.
I really hope this makes sense. I am also really glad you asked this question. I think it shows, on top of your actively working in therapy, that you're really wanting to do this. Provided you keep yourself wanting to do the things that are ultimately to your advantage, I think you will be successful. What you're doing is important, because it's more than just about "reducing my health risk by modifying x, y, and z factors." You are learning to take care of yourself, which is an expression of self-love and self-respect. You are doing yourself -- not just your body -- a great kindness. This isn't about doing what your parents or the doctors tell you to do, and it isn't about running away from fear. You're a grown-up now -- you can do whatever the hell you want to do. And you're choosing to make friends with yourself, and to live the best life you can with what you've got. Best of luck.
posted by peggynature at 4:20 PM on March 23, 2009
I broke my back in a skydiving accident in 1991. At the hospital, I was also diagnosed with a berry aneurysm in an unreachable-by-surgery part of my brain. Shortly after that, my doctors convinced me that I'd never again be able to do the activities needed for my job (I was in AF Special Ops) -- they convinced me that I'd surf a desk for the remainder of my military time, if I even got out of the wheelchair.
I got out of the AF in 1992, still with no idea what to do ... the only career I had known was jumping out of planes and helping to establish air superiority in a dangerous environment.
I chose computers as my next career. On and off over the next several years, I spent some time in a wheelchair due to my failure to avoid activities that I knew I shouldn't do. I jumped a few more times, each time stressing my back so badly that I was in excruciating pain for weeks afterwards.
Part of the recommendation for caring for my brain problem was that I avoid strenuous activity. I didn't fall in to that, either; I don't know if it's stupidity or stubborness.
Somewhere along the way, I gave up skydiving for good. My back improved to the point that now I can ride trails on my mountain bike without lapsing into pain. I can lift "heavy" objects (heck, I can even lift myself) and take long hikes in the countryside.
The improvement came from me giving up just one small thing, a thing that made my wife, kids, and extended family nervous anyways. It was damn hard to give it up, but in the end my life has improved to the point that as a 47-year-old man, I am routinely identified as a 35-year-old.
My suggestion? Find that one thing that you can surrender. If it's the weight, take charge. If it's the control over your disease, do it. It's not simple. It's not easy. But you must do it.
Another short (!) anecdote: I have a friend from back in my military days, same age as I am, who gave up all discipline when he got out and gained a lot of weight. Four years ago he had a heart attack while sailing his boat. He sold the boat and gave up nearly all forms of activity other than walking in the mall. He lives in constant fear of his heart. He eats all sorts of unpleasant things, and spends his life on the sofa for fear of overtaxing his "weak" heart. That's no way to live. Don't become that man.
posted by dwbrant at 9:25 AM on March 24, 2009
I got out of the AF in 1992, still with no idea what to do ... the only career I had known was jumping out of planes and helping to establish air superiority in a dangerous environment.
I chose computers as my next career. On and off over the next several years, I spent some time in a wheelchair due to my failure to avoid activities that I knew I shouldn't do. I jumped a few more times, each time stressing my back so badly that I was in excruciating pain for weeks afterwards.
Part of the recommendation for caring for my brain problem was that I avoid strenuous activity. I didn't fall in to that, either; I don't know if it's stupidity or stubborness.
Somewhere along the way, I gave up skydiving for good. My back improved to the point that now I can ride trails on my mountain bike without lapsing into pain. I can lift "heavy" objects (heck, I can even lift myself) and take long hikes in the countryside.
The improvement came from me giving up just one small thing, a thing that made my wife, kids, and extended family nervous anyways. It was damn hard to give it up, but in the end my life has improved to the point that as a 47-year-old man, I am routinely identified as a 35-year-old.
My suggestion? Find that one thing that you can surrender. If it's the weight, take charge. If it's the control over your disease, do it. It's not simple. It's not easy. But you must do it.
Another short (!) anecdote: I have a friend from back in my military days, same age as I am, who gave up all discipline when he got out and gained a lot of weight. Four years ago he had a heart attack while sailing his boat. He sold the boat and gave up nearly all forms of activity other than walking in the mall. He lives in constant fear of his heart. He eats all sorts of unpleasant things, and spends his life on the sofa for fear of overtaxing his "weak" heart. That's no way to live. Don't become that man.
posted by dwbrant at 9:25 AM on March 24, 2009
« Older Who is the best bra fitter in or near Rochester... | Fifteen years ago I heard that we had ten years to... Newer »
This thread is closed to new comments.
No. You have a nearly unshakeable attitude that to compromise your lifestyle at all means knuckling under and letting your parents control your life.
This has nothing to do with diabetes at all. Your parents did not treat you well in many ways and used manipulation and fear to attempt to control you. In order to survive their treatment of you, you adopted a bunch of defense mechanisms which, while keeping you free of manipulation and ill-treatment from them. Now that defense mechanism, which literally meant life for you back then, is harming you now.
The key is letting go of your hurt, anger and disappointment regarding your parents. Usually therapy is required for that. The rest will all fall into line.
posted by Ironmouth at 11:32 AM on March 23, 2009 [9 favorites]