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Living Alone with Diabetes.

Home alone ... with diabetesAfter college, I moved in with my then-boyfriend and we lived together for about five years.  But when he and I broke up, I lived alone for a little over a year before Chris and I moved in together.  (And by "alone," I mean with Abby the Cat and then Siah Sausage was introduced to the fray.  But neither of them were able to handle a low blood sugar effectively, so they were useless, in a diabetes sense.  ... except that whole "Abby sensing low blood sugars" thing ...) 

Living alone was a big thing for me, because I was always fed the line "You are diabetic; you shouldn't live alone."  And for a long time, I was scared to be by myself.  But after spending those first few weeks alone in my brand new place, alone for the first time ever, I felt empowered.  I know my mother worried - she called every morning - and my grandmother used to drop by "unannounced" (but she was checking to make sure I was in one piece), but I understood why they checked in on me.  Lows were a constant and scary threat.  It was a big adjustment, going from being under the constant care of my college roommates and then my boyfriend to being solely responsible for myself, but I liked it.  I felt like it lifted me up, emotionally, and showed me that I can do anything, with or without the diabetes crap. 

Abby (the Person) talked with a few of her PWD friends about living alone.  Some are in their own apartments for the first time, some are adjusting to college, and some are getting ready for that first leap into living on their own.  Here are a few perspectives on what it's like to live alone with diabetes:

Katie M.
I'm in my junior year in college now, so have been more or less on my own for about three years now. The transition did a number on my A1C because I really don't like being low. Although I know that high numbers can be just as dangerous that's definitely the side I air on because they're much less immediately debilitating - key word immediately. My precautionary tendency is to run high, flawed logic though it is. It's also been very important and helpful for me to be open about my diabetes and to create a support system for myself at school - I mention it to my professors at the beginning of every semester and have friends who I trust and who are interested. This way I have people in my daily life who more or less know what's happening when I talk about diabetes related things and who I can count on to help if need be.

Arianna J.
I've been managing my diabetes on my own for 8eight years now and I'm so used to doing it on my own that I have a really hard time letting other people help. I even get nervous at the doctor's office because I would really like to do my own shots and don't trust other people giving them to me.  Living on my own, I try to keep in touch with other diabetics because it keeps my mind thinking about the best things to be doing (like checking and bolusing), aka the basic things that sometimes are easy to forget in the college life.  I also like to feel like I can complain to others who understand because that keeps me from getting super discouraged every time I'm low or high and just sick of diabetes in general.  Keeping a sense of humor has really worked the best for me.  But now, I have to say that I wish I didn't take so much control because right about now I wish I could go back to the 7 year old phase where someone else does it all for me, but as for now not taking it too seriously seems to be going pretty well.

Samantha S.
There are definitely pros and cons of living on my own. On the one hand, it gets a little lonely, as my D-support team is rather far away (aka my family, aka my parents and camp-friends). Sometimes when I'm really low, I get scared that I'll pass out before I can grab the OJ from the fridge. But living on my own has given so much independence, and so much maturity. My mom no longer comes to my endocrinologist appointments with me, I'm responsible for communicating my questions and concerns. If my pump breaks, I'm the one on the phone to Minimed. Living on my own has made me grow up, like it does for most "aspiring adults". However, living on my own with diabetes has certainly put me on the fast-track.

Bethany K.
Living alone is the best thing I have ever done for myself. However, right before I moved into my new  apartment, I started having second thoughts.  Cold feel. Butterflies. If I move into a new apartment on my own, who is going to take care of me if I have an emergency?  What if I have an extremely low blood sugar and need help, but no one knows it because I live on my own?  What if something horrible happens to me while I live here as a single, young lady who just happens to have type 1 diabetes?  ... So far, so good. It has only been 3 months now, but I've grown so much from this time on my own both personally, spiritually and emotionally.  Also, when it comes to my diabetes, control has only become tighter. Not only do I not need to worry about what my roommate is going to say when she gets home, but I've also found that I have more peace of mind if my blood sugars stay within the range of 90-130-which in the end lead to a 1/2 point drop in my A1C.  So, living alone is pretty great. Are there demons I had to overcome? Definitely. Do I still worry sometimes? For sure, but I have made friends in my complex who know about my diabetes.  I live across the street from a friend from diabetes camp who would be here in 2 seconds flat if I needed her. I am proud to say that I'm doing alright and I recommend living alone to every person at some point in their life. It will change you for the better.

Briley B.
I technically don't live on my own; I have a roommate.  Except that she is clueless about diabetes, even though her own mother also has T2.  Her mother has tried to ignore it for many years though, so I can understand that.  I have to say that when I first realized my roommate was clueless, and after my dia-buddy left again, is when I started my blog.  It helps to write, and then notice what is going on in my diabetes life. I have my glucagon next to my tabs and juice boxes next to my bed.  And I talk to my mother every morning before work (I'm the one to call her).  I try to test before I go to bed and when I wake up.  That way I am at least safe during my unconscious hours.  I've been testing more regularly, but whether that's because of living alone or just growing up, I'm not sure.  I also have everything organized so that if anyone needs to come in and help me, they can easily find it.

Abby Bayer.
The first time I moved out into a dorm room for college, I didn’t really consider diabetes an issue, but more a part of my life that needed to be packed up and brought with me. I bought a tall plastic drawer thing (that most college kids buy) and filled two of the drawers with diabetes supplies.  I also made sure that I had my own mini-fridge to ensure that people knew the stuff inside was off limits. My roommate was totally cool with it, and we just stayed away from each other’s refrigerators.  People often came in and took my snacks (crackers and such), but they also hung out in my room and were my friends, so I kind of took it as a loss (and borrowed things from them without guilt). When I finally got my own house in college and was off the meal plan, I made it a point to try to cook healthy and make sure my house-mates knew I had diabetes and that some of the stuff was simply to be thought of as my medicine, and not as food.  I’m nervous to ever live completely by myself, but I’m sure I’ll come up with some sort of system to make sure I’m safe, and that I can keep my health a priority. It’s also a wonderful conversation starter when people see Arthur or Sesame Street juice boxes in a 20-something female’s kitchen.

Thanks for sharing your perspectives, you guys! 

Are you a PWD who has some insight on living alone, or making the choice to avoid living alone?  Are you a parent who is nervous about their kid going out on their own?  If you have insight to offer, please do!  :)

Comments

After my roommate moved out and got married, I had about a year of living alone before Trey and I got married. Even though I lived by myself, I was in contact with Trey most of the time either by physically being with him or on the internet/phone with him. I think having him around helped ease my parents' worries (if there were any, they never let on). So I think the key to living alone is that it can be done, but you do need some accountability everyday to make sure you're alright. I hate to say it this way, but it's akin to having an elderly parent living alone. They can live by themselves, but you want someone (you or a nurse) to stop by once a day to make sure they're OK.

(P.S. I mentioned Abby (the cat)'s CGM abilities in my post today. I believe I have a dog with the same glucose-sensing abilities.)

I've been on my own since college. 11 years. There was a short time I lived with someone but it doesn't count. Ha.

As I get older I don't like it much anymore. After almost 26 years with Type 1, things change, my body changes, circumstances etc.

I do better on my own, I think. Others may disagree and that's fine. My Doctor's don't like that I live alone because in the past year I started to experience hypounawareness.

Other then that fun scary aspect of Diabetes, I'm fine on my own. But....I don't want to be on my own forever.

I've always liked being alone and independent and danger excites me so I have always looked at it in a non scary way...plus, until recently I had never heard of diabetics not waking up from lows. Then I did hear about it...and realized I've been lucky to never have had a problem feeling lows. Then I had twins and my husband had to go out of town for weeks at a time. THAT scared me because if something happened to me, it also meant something might happen to my two little babies. Needless to say my mom came over as much as possible during those times because it made her nervous, too! And at night, I set alarms to wake me in the middle of the night and early in the morning just for extra assurance. Luckily all went well. It was intimidating though.

I lived alone for 6 years. Since I'm not a pumper it was a little less nerve-wracking, IMO...but it was still scary to be sick or low and alone. However I only lived 30 minutes from my parents so it wasn't as big a separation as it could have been. This was great when I needed Mom or just wanted to save quarters on laundry ;), but I do wish I had been able to go away to school or live in another city to be truly independent.

My mom had me to call her every morning to make sure I was OK, and I was expected to "check in" regularly when out & about. Sometimes my parents were a little overprotective, but it was still good for me to be on my own. There's no better way to learn how to handle situations as an adult and make your own decisions.

My son has started his career after college and lives in an apartment alone. He's prepared with juice boxes by bedside and is very conscientious about his type 1 care. I feel like the more as parents we fear and express our fear to our adult children (and our children when they're younger for that matter), the more we pass on that fear to them. I'm extremely proud of him, and I have the utmost confidence in him. Sure, I've thought boy it'd be nice if he texted me every morning before he left for work, but he's 23 years old. Life carries on, and neither one of us let's fear rule our lives. So very proud of him!

Wow, reading all these testimonies is AWESOME! I am a mother of a teenager who will soon (2years) be sending my daughter off to college (I want her to stay home). I wake up at night thinking of the possibiities. Great question and great responses!!

I've been living alone for about 15 years, and it was OK until last September, when I went into a coma. I knew I was in trouble, but didn't know how much, and so didn't call 911 while I was still awake enough to do so. My friends came looking for me after I didn't show up at a picnic, and got me to the emergency room; otherwise I would have died by morning.
The lesson here is to have a real clear plan on what to do if you're in trouble, and to have a clear definition of what trouble is. My new endo and I decided that if I go above 300 and can't get it down, then I am to call him, or call 911 and go to the emergency room. Everyone who lives alone needs to have a plan -- lows are not the only problem.

Thanks for the post. As college nears for my 17 year old, these responses make me realize she can and will do fine on her own when the time comes!

I think about this all the time as my 16 year old has started talking about going away to college. Of course, I would prefer that he stay with me!!! lol, having said that, this post made me smile and realize, he will be fine without me...on the other hand, I will be a wreck!!!!!!! Thanks, I look forward to your words each day.

I just attempted to type my mailing address in instead of my email...what is this, 1992?

Anyway, I have lived alone off and on since I got out of high school six years ago. I don't really mind it, but when I am dragging my butt to the kitchen for a low at night, if I'm below 60 mg/dl, I bring my phone with me so at least I can try and eek out "911" if I feel like I'm going to pass out. But the main thing is, I have Dexcom, and I try to keep candy by my bed so that I don't have to walk to the kitchen. Lows are really the only thing I worry about with living alone.

I also tell my coworkers that if I don't show up for work, call me, don't assume I'm skipping, because I may be too low and not able to get up.

I lived alone with my first child from the time he was 18 months until he was 5. I actually never really gave it a thought (Naive ingorance is bliss?).

Now that my husband is leaving for extended periods of time for work and I have two kids, I am a little more worried but I try not to be overwhelmed by it. My oldest son (now 8)is aware of my diabetes and we have a step by step plan set up if I have a low and cannot help my self. (Basic plan-Call 911!)

I have a CGM which helps me a lot with lows and I monitor like crazy so I hope to never have to call on my kids for help. I don't want that responsibility on them but it is a part of our life so if it happens then we'll pick up and move on from there.

What an interesting perspecitve....I am the exact opposite in terms of my experiences, because I was diagnosed with T1 at age 27 while I was living alone. I found it hard to then move in with my then-boyfriend (now husband) and let him into my little diabetes world. He asked questions, challenged me and wanted to know about the d-beast. I was so intensely private about my diabetes and kept it so close to me that it was tough at first to let him in! Boy am I glad I did...my life hasn't been the same since! In ALL the good ways!

Out of my 28 years with type I, I've been living alone the past 20. (I've had the same cat 16 of those years as well.) I've enjoyed it, but clearly there are risks. So far, no ambulance calls, but I have had low bg occasionally when the alarm clock goes off. Unfortunately, I am a sound sleeper and low bg or pump alarms don't easily wake me. I've learned to set the alarm for 3am or so when I am low bg or sick at bedtime. Yeah, my mom worries about me, too. Having the CGMS does help somewhat.

What a great topic!
I was diagnosed with T-1 at age 24, after I had finished college and moved quite far away from home (a 5 hour flight in either direction to a parent!). I had started a new job about 6 months before diagnosis and moved into a studio apartment by myself. When I was first diagnosed, it was incredibly scary to live alone. I thought about leaving my lease and finding roommates, but in the end decided to stick it out, and I'm glad I did. I had plenty of privacy to deal with the emotional side of diabetes, and I kept my close friends on speed dial. Actually, the scariest part of living alone was when I started my pump- I had my mom fly out to stay with me for the first few nights when they recommend you not be alone due to the risk of dosing problems (i.e. random coma!) I'm proud to say though, I lived alone as a PWD for a year and a half before moving in with my now husband- even though I do rest a lot easier with my current roommate!

When I was asked to write about living by myself, I wrote about the first things that come to mind. 1: I don't actually live by myself, but in the diabetes sense I feel like I do and 2: How to treat a low. But as I was reading what I wrote, I realize that there's so much more to it than that. When my roommate offers to cook dinner and instead of saying thank you, I think "how many carbs is this going to be?" When I'm sick and go trudging for gingerale, don't be alarmed when I get upset when you ask why I need diet. It's saying, I can't afford to go out to dinner tonight because I just spent $140 on strips & tabs. There are everyday decisions that must be thought out, considered, evaluated & decided in the time a "normal" person decides yes or no. Don't get me wrong, it's definitely possible, and the reason that I'm not living alone is because I can't afford it, not because of diabetes, but I know my mother is much happier there's someone else around. And above all else, there's the fear: http://independenceandlife.blogspot.com/2011/02/glucagon.html

I was handed the "diabetics can't live alone" line too. My Mommy took that to heart. I lived with my parents or my grandparents until I was 32. At which point I moved in with my sister, then briefly in with a friend.

Finally at 36, I lived alone for about 4 years. I was lonely from time to time, but mostly I loved it. I felt like a true adult. And like I could take on the world.

Three years ago, I moved from Houston to Dallas to be closer to my brother. I moved in with him because I can't really afford to live alone here. It's much more expensive than back home. It's been great living with my brother again, but I miss the feeling of independence I got from living alone.

But I think our Mommy sleeps better at night with us living together. :)

I went to Tanzania, Isreal, Jordan, and Palestine all in college. I joined the Peace Corps and lived in Morocco and moved to Boston from Chicago after the peace Corps. Even though I was "alone", I was never alone I told friends and coworkers and they have been both a blessing and a curse. It is hard when my coworker used to tell me I would loose my arm (less dramatic than a leg) because I was eating a cookie or whatever.

It was all about creating a support network and it really worked well for me. Now I am moving in with my girlfiend and I hope I don't loose that part of my independence.

I've never lived alone. I went from living at home with my parents + sister to living with my hubby. I don't think I'd like living alone but having nothing to do with the diabetes aspect. I'm actually not sure how I would feel about the diabetes aspect if I did. Probably something to get used to. Like everything else.

I finally moved out on my own a few years ago, into a condo. Within 6 months, I knew I needed a CGM, because I was too often erring on the side of keeping my BG's too high at bedtime in order to avoid nocturnal hypoglycemia. My MM CGM catches a seriously low (or heading that way!) BG maybe once a month, or only once every other month, but it is a Godsend because it gives me peace of mind that I can just close my eyes and fall asleep. I've had Type I for almost 40 years, so my hypoglycemia unawareness is likely more pronounced than that of a new college graduate.

I never lived alone, but I've been alone with diabetes. I lived with my grandparents since I was 2 until I was 15 and I was diagnosed at 11, and my grandmother used to check me out every night for signs of hypoglycemia. Then I moved in with my parents during high school and I was mature enough to handle my own diabetes thing. But still I had the comfort of being supervised in my unconscious hours. When I moved out to college, my then-boyfriend-now-husband lived in a nearby dorm and my roommates - although clueless about how to treat a low - were instructed to call him when something wrong happened. He's very helpful in a low, suffering himself episodes of hypoglycemia (although he's not a diabetic), but he's also a very deep sleeper, so those scary lows in the middle of the night I have to handle myself. I really thing I must buy a CGMS.

The whole "diabetics shouldn't live at home" thing makes as much sense as "diabetics should never be alone for an extended period of time." The only difference is the AMOUNT of time you're at risk of having a low that requires the assistance of someone else.

Plus, every diabetic is different. Some might be prone to bad lows and prefer to live with someone "just in case," but others might not have much of a problem with lows and decide that the benefits of living alone outweigh the risk of possibly having a low so bad that self-treatment is impossible... and taking precautions to make this as unlikely a problem as possible.

Kerri, Thanks so much for your postings. It is always so wonderful to hear how young adults are dealing with their diabetes. My son will be leaving for college in 6 years and I am already anxious about it. I am working hard not to transfer my anxiety onto him, because I don't want him to ever let diabetes stop him from doing something he really wants to do. However...thanks for giving me "permission" to call him every morning he is away at school!

This may sound sad, but even though I've technically never lived alone, I feel like I have. I have major issues with D-disclosure, and it is deep rooted in how I act and who I am. I am very gradually getting over it, and starting to trust people enough to tell them I am a PWD, but in general, I don't tell anyone. I think you touch on a lot of reasons why I don't tell people in your blog, actually. And I think that classifies me as "living alone". Thankfully, my best friends and husband know and I am in pretty good control of the lows, but there have been scary moments. Not too many, but more than 0 is scary enough.

I realize that wasn't the issue you brought up in this post, but thought I would share my thoughts.

I have been on my own since being diagnosed on college 7 years Ago. Yes sometimes it would be nice to have somewhere around but you learn better on your own and find ways to cope independently. I dont think its bAd by any means unless you convince yourself that you need someone to rely on.

First, I want to say how smart it is that Briley has her life organized in such a way that help could find what they need in an emergency. I'd love more details on that, but I must say I never thought to do that.

I was never warned not to live alone and my independent heart just couldn't wait to move away from home, so I went to college in NYC at 17. I also know I'm lucky that I'm still awakened when I feel lows in the night. My sense of independence also kept me feeling isolated for many years, even without realizing it. I was very open about the fact that I had diabetes, but until I found this blog, I felt like an island.

I still relish being alone, but I hardly ever get to now, since I live with my husband and 3 sons. Ah, the good ol' days . . . .

There are two types of people in this world: One who has had a flat tire, and one who is going to have a flat tire.... this relates to Diabetes and using Insulin. At some point there will be a rainy day - and there will be a low Blood Sugar that a Diabetic cannot handle alone. Have a plan is all I'm saying. The Diabetic status quo changes over time, so your "Diabetic" confidence now could mean trouble at some point in the future. There is a reason Doctors tell us not to live alone! Think about it people.?.

I have managed to have somebody around for most of the 28 years of living with Mr D. I have worked as an Outpost nurse in remote areas (fly in only) ans once I was alone for 4 months. It was a little scary, but also fun! I would be more worried if I had the unawareness thingy.

Anybody: What do you do if that time you can't treat it yourself is when no one else is at home? Maybe you can have a net to fall into more of the time, but not ALL of the time. It's not like you're progressively more irresponsible the more you're alone.

I wanted to say that developing a habit of staying high is very difficult to break and once a person decides they want children, it may get in the way of bringing the A1c to 7 or below in a timely manner.

This is tricky topic, but an important one (glad you're bringing attention to it). When a relationship ended I and decided to live alone, I told my mother - and she hung up on me (something that is unheard of in my close family). It was, perhaps, the worst rift my family has experienced, but I knew it was coming from the fact that years before, when I lived in Asia, I had woken up in the ER twice due to hypoglycemia.

I needed to learn that my mom's care and near-obsession came from nothing but love. She needed to understand that I didn't want to live a life directed by fear of my diabetes. In the years since then we've worked out a compromise that involves neighbors, my sister, text messages, IMs and emergency contact lists.
It is something for all PWDs and their parents to think about, especially as the transition toward independence starts for younger folks. Great post, Kerri et al!

I was diagnosed at age 46 with Type 1, six years ago. Unfortunately, my husband couldn't deal with my situation (he was never a help) and moved out to, as he put it "grow up". So I have never been in a position of having someone to help take care of me. I am scared when I wake up with a bad low, but I have notes with instructions that I use when my mind is "foggy". It's worked so far.
I do have to say, I get teary-eyed whenever I read about the amazing husbands/boyfriends/partners that support you and help care for you!! Cherish them!!

I can definitely relate to Katie M. "airing on the high side". I absolutely hate the feeling of being "low". It makes me feel weak and vulnerable, and sometimes I can't see... It's miserable.
That being said, I hate to think of the long term effects that running "high" might eventually result in...

Yeah! I am so scared of being alone. I leave my numbers high to prevent lows, when i am alone. Because I am so scared of the feeling that I won´t be able to help myself. And now that my husband and I are trying to have a baby, i need to lower my AC1, but it´s so hard. Do you guys have any advice, on how to be cool on your own?

Suki, I may be speaking out of place, but in all honesty, someone in control of their diabetes, aware of their body's needs and prepared for emergencies can DEFINITELY live on their own successfully. :)

Promise. I'm doing it right now.
18 years of diabetes and counting! Diabetes NEVER has to limit you or prevent you from doing ANYTHING you want. Just be prepared and educated. Thankfully, we don't live in the "Still Magnolia's" time anymore.
Just sayin'...

I've been a PWD for almost 17 years (DX when I was 9). I lived alone my junior year of college, then again now for the last 3 years. My mom never really shared any *obsessive* concern about me living alone.. I think she knows I have had enough experience. I recently read about the microdosing Glucagon ... and I think its an awesome idea! Everyone should check it out...

I'm 58 and have had Type 1 diabetes since I was 24. At the beginning there were no really close calls, but as time goes on, it becomes more and more of a problem. It is harder for me to recognize when I am having a low now, and I am also very brittle with 40 not an uncommon blood sugar reading for me. After separating for three years, I moved back in with my husband whose help with this I do appreciate very much, EXCEPT that he yells at me when I'm having a reaction to try to "shock" me into cooperating with the treatment for it. I can sometimes tell that I am not totally lucid, but I am aware that he's yelling at me, which seems unnecessary and mean to me, and I definitely remember it when I come back to earth. Then I'm mad about it, and he rationalizes his behavior as being necessary. He doesn't seem to understand that gently coaxing would be just as effective. I suspect he just resents having to be responsible for me. If that is the case, then we really need to not be together. We have other problems, and I would like to move out again, but now I am terrified that I will die during the night if he, or someone, is not there to make sure I am okay. I have always been independent and don't want this disease to control yet another part of my life. I am an adult, and I would like to live my life like one.

My cousin is diabetic and had to move to another city recently for a new job. My aunt and uncle purchased a personal emergency response system from Alert1 for her in case something happens and no one is around to take care of her. It's not the best possible arrangement, but my cousin certainly enjoys the fact that she gets to be independent and the knowledge that her parent's fears are slightly appeased knowing that my cousin has help available to her 24/7.

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