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Moving out on your own for the first time is exciting but extra challenging with T1D. If you’ve made it past the ‘moving out’ transition in your life, what is one piece of advice or something you wish you had known to give to young adults moving out today? If you are a young adult moving out on your own (or still finding your way!), do you have any questions for those who have successfully made the move from parent home to independent living?
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Don’t be shy about your T1D. If you have roommates, educate them. I traveled with and later moved in with my bestie and she always had my back.
Always keep plenty of low treatments right by your bed!
In 1980, I was 19 and married my HS sweetheart. He was in the Navy and after the wedding we drove down to Norfolk, VA where he was stationed. When we arrived, we had very little time to unpack because he had to prepare for a three month deployment. It was hard on both of us. I was already a diabetic for 3 years and I was afraid. We didn’t have a phone set up yet, so I would run up the corner to a phone booth. Which really scared me because if I had to call for help, I couldn’t. I missed home, I missed my husband and cried often. I decided to come up with a regiment or a schedule. Keep OJ in the refrigerator at all times. Have candy next to my bed, test more often then usual. Which in those days it was really difficult because the meter was a size of a brick and you had to calibrate it each time you tested. The insulin was administered using a vile and a syringe. It was pork insulin for the long lasting it was cloudy looking. And the fast acting was clear. That’s how you knew the difference. I made it through with lots of prayers, focus on the future, and fuel my determination. Today, there are so many ways to keep yourself in check with young adults that move out. But one thing stays the same. You are your own doctor. So learn and study yourself. Download an App and look at trends. Get a CGM. OMG, such a game changer to have today, than what I had in my young self. Let your close friends or a nice neighbor know that you are diabetic. People will help if they know. Have OJ at all times and store your supplies in one place for easy access.
You and I had a similar experience and, yes! CGM has been life changing for me.
You can live a normal life with your diabetes, you are in control of your care, and let others know around you what do in case of an emergency.
Fortunately got type 1 as adult. I can imagine it muss be terrible in those days of exploring, parties, drinking etc.
I was diagnosed at 20 after I had already moved out on my own. The only advice I have is to not be afraid to advocate for yourself and find a great support system.
Be sure to have a decent meal before you start moving around too much, and be extra careful with your insulin dosage. When I moved into my first apartment in Chicago, my sister and brother-in-law rented a UHaul van, as I didn’t have enough stuff to hire a moving crew. The three of us moved my things from their 2nd story condo, which didn’t have an elevator, to the van and back. I only had a little bit of yogurt and coffee for breakfast that morning. We were also going as fast as we could because it was Super Bowl weekend, and it had just snowed. (Winters in Chicago are brutal!) By the time we’d loaded everything and driven from Evanston (the first northern suburb you enter from the city) to my new neighborhood in the city, my sugar had crashed so low that I didn’t know where I was. My new roommate was a bit of a fitness and health junkie, so she didn’t have any sweets on hand, and the only juice she had was diet. My sister had to go to the CVS across the street from my apartment and got me muffins and real juice. I felt bad that I couldn’t help more with the actual moving because I didn’t feel well. I took about a 30-minute break to recover.
Find and and keep your D buddy.
When I move town my first priority is to find a good endocrinologist. If there is a teaching hospital I start there.
I think what helped me the most is attending my endo appointments by myself once I turned 18. Then when I was ready to move out several months later, I already had an established healthcare team in the town where I’d be going to college.
In almost prehistoric times 1965 when I was diagnosed I was in a company subsidised residence. They were amazingly helpful. Today I’d advise CGM without which even now I’m not too sure living alone is a great prospect.
Find someone in “your circle” that you can educate on your diabetes so that someone knows what to do in the event that you need help (i.e. hypo or hyperglycemic episode)
Let’s put it this way, it was a free-for-all with me. I was 7 in 1969 when I went into a coma. My mom had died and my dad did the best he could but there was really no supervision of my diabetes—just a denial of sweets. When I finally moved out—there was no more parental supervision, no steady meal times, rare healthy balanced meals, no insurance, so, no doctor—couldn’t afford the appointments. This was in the early 80s- before home test kits were a thing. I was out of control. It took until the late eighties for me to have a steady job with insurance but I didn’t know how to use it so I never did. I really didn’t start taking my bg regularly until the late 90s. Went on an insulin pump and promptly got my bg under control for the first time in my life. My body said, “What the what?” And the blood vessels in my eye exploded. Been dealing with retinopathy for over 20 years. Now, with CGM, my A1c’s are great and I’m in-range 95% of the time.
Cautionary tale to those leaving the nest: monitor you bg levels—even if you go a little crazy—when out of your parents’ watchful eyes.
Don’t be afraid of people knowing about your diabetes. It is always better if those you are close to are aware and there to help if needed.
Everyone is their own clinician. You know your body, follow your gut and check, check, check your blood sugars. CGMS are far from perfect. Continue to use your blood meter.
Seems obvious but plan to be prepared in case of emergency. For example, store some easily accessible glucose tabs in the bathroom, bedroom, and living room. On the fridge, post a list of your doctors and who should be called in case of emergency. And take a few minutes each day to be grateful and express your thanks to those who are there to help you in case of emergencies.
1. Always have 3 glucose tabs in your pocket.
2. Educate yourself about T1d. You are in charge of your health.
3. Tell your friends that you have it, tell them it’s no biggie, but in case of wierdness, to give you sugar.
Stock up on supplies before you’re kicked off your parents insurance.
Get a CGM that has alerts like the Dexcom. This will wake you up and alert you at all times before you are low enough to be unable to treat yourself. This is a game changer and really takes the worry out of living on your own. You can also share your readings with a parent or someone else you trust that can help to check on you when there are issues. To me if I was still living on my own, I’d make getting a CGM a #1 priority even though they are expensive.
En raison de la complexité de la maladie et de la charge mentale de la maladie, je conseille très fortement de se connecter à un groupe de DT1 pour un dépannage rapide au quotidien.
And if you cannot find a support group of T1Ds, try to organize one, preferably in person, since most communication is thru body language and voice modulation and tone. I find Zoom is a poor substitute. Remember to remind prospects to get vaccinated and tested.
Projects often fail if they’re underfunded. Save some money; establish credit; prepare to work.
How do I manage my diabetes at college? St home I sleep through my dexcom alarm. Will the dining hall have carb counts????
I don’t know if dining halls have carb counts these days (they didn’t in my era.) BUT, you could call your college and ask to speak to the dining hall manager to ask them if they have lists of carb counts. Also, there are books available to get this information… or apps… there are tons of apps with carb counts. You’ll have to experiment to find which one you like best.
Sleeping through the Dexcom alarm? I don’t really know how to help… but, can you turn up the alarm? My receiver has 3 different levels, but you may use the phone to see your numbers… so, that is a hard question to answer. Sorry. :/
Lots of people run into problems when their parents’ insurance no longer covers them and they can’t afford their own. This is when young folks have died from resorting to rationing. Everyone should know you can by cheap OTC R and N insulin from Walmart. This stuff behaves very differently from what you’re used to. NPH in particular is challenging b/c of the long activity curve. But it is the stuff those of us dx’d back in the 80s – 90s used for years and you can survive on it while between coverage for whatever reason. Better than DKA!
I have never moved out. I have gone from kid to caretaker for Mom, who has diabetes.
I moved out to college in 1977, ~12 years after being diagnosed with T1D. I always kept some type of low-glucose treatment nearby. (I still do, for that matter.) Make friends and don’t keep your T1D a secret. Help is useful when having an insulin reaction. I played varsity football and told my coaches and kept some kind of glucose stuff in the team training box. Summary: make friends and expand your network (useful advice for non-diabetics, too), follow the treatment methods you’ve been taught, and keep low-glucose treatments nearby at all times.
Attend a Type One Diabetes summer camp. This’ll have at least three benefits. 1. You’ll realize you are not the only person with diabetes. 2. You’ll learn practical guidelines for balancing exercise with food with insulin with timing. 3. You might have fun and make at least one new friend.
Oh my gosh that was a long time ago 1965. We knew nothing then we didn’t know what our blood was absolutely nothing just went on took your shots had oranges or a pack of life savers. The only advice I have is know how to take care of yourself and be on top of everything you can. The advances today are phenomenal compared to what I had to work with. My friends were a great help they could tell when I was turning into a space cadet and they offer candy or orange juice I don’t think I could’ve made it without my friends. Also make sure your blood is high enough When you go to bed. Know yourself and how to deal with all situations I was a Girl Scout and I was always prepared he just never know what can happen your pump might break I have to know what to do your sensor falls off you just have to know how to do it the old way that’s the best advice I can give you
I “moved out” shortly after my high school graduation in 1978. It was just the natural transition. No devices back then, just peeing on sticks. Simpler times in many ways.
Same with me in 1953…
Don’t forget what you’ve learned so far. Just because your mom isn’t there doesn’t mean that your diabetes isn’t there either.
Don’t ignore diabetes just because you’re having fun. It’s really not worth the health risks. I moved out of the house before CGMs and was always embarrassed to check my BG in front of people. What I should have realized is that if they judged me for that, they’re not really my friends anyways. The same goes for injections, correcting lows, etc. Also, for those in the US where healthcare is never guaranteed, work hard in school and choose an area of study that will make you EMPLOYABLE. Please be realistic about this. You NEED health insurance more than anything else, and you will save innumerable amounts of money by having employer sponsored health insurance. Find an advisor who will help you figure out the most appropriate jobs to apply for after college that will have health insurance benefits. As unfortunate and unfair as it is, this is the most important part of your college experience.
Establish a healthcare contact. Be self-disciplined! Take insulin/meds on time, count carbs…don’t guess and check your bg. If at all possible, get and use a CGM! Tell a friend/co-worker you have T1 D and how to help if you’re “acting strange” from a low bg.
Not applicable in my case as I’d already ‘moved out’ … a number of times, and had served both in the British Army and a ‘sister’ American Regiment before I developed Type 1.
The advice I would offer to people ‘moving out’ for the first time is “take it in your stride”. Don’t expect to be ‘perfect’ all of the time, and DO try to keep on top of your blood glucose levels, making sure that you regularly attend appointments with your Diabetes Support Team … doctor/endocrinologist, diabetes specialist nurse, certified diabetes educator, dietitian, etc. You WILL find that they are an invaluable asset.
I moved out of my parents home in 1980. Things were quite different then. The routine was very simple. Two shots a day of NPH and Regular insulin. It was advised to limit simple carbohydrates but without my mom’s intervention, I didn’t avoid sugary foods at all. I developed retinopathy in my late 20s. I received laser treatment for it when I was in my mid 30s. It’s been stable for all these years thanks to better technology for managing T1D and me improving my management skills. Last May was my 50th Diaversary. My advice to anyone moving out on their own is to stay focused on managing your diabetes.
Maintain the support ties you were blessed with before you moved out.As diseased people, we need those ties – and those that love us need those ties as well. They need to know their love and care is still a wise use of their time and effort. Don’t be a leach – but let your loved ones continue to love you.
Above all else take care of T1 management. All else will fall into place if you take care to stay healthy.
There is a website called College Diabetes Network. These folks might have good information for our T1D people who are transitioning from home to college.
One thing I wish I had known was that my diabetes would change over time… and, I wish I had known about hypoglycemia and hyperglycemia unawareness!!!
Find a doctor that is willing to talk to you and help.
Always carry some form of glucose because lows could easily sneak up on you… even in class and during finals (been there, done that!)
I did not do this, but I wonder if getting a good relationship with the school’s medical personnel would help?… if you have someone who you can go to or call on when things are urgent might give a sense of safety? It would depend a great deal on who/when/how/where the medical staff were available and if you mesh with their personality.
If you live alone you absolutely need a CGM with alarms to wake you up from sleep.
I keep the volume on my Dexcom on low or vibrate depending on where I am because I don’t want them loud enough for everyone around me to hear. And my husband follows me and will give me a text to make sure I know my numbers. But when I hit 50(urgent low setting) not only does the Dexcom low begin to blare it’s alarm. But I chose the most annoying baby crying sound on my phone to single the urgent low. I often don’t hear my alarms but there is no way to ignore the crying baby.
It’s doable.. Just need to take of yourself.
Live within your means from the start
Have someone you trust available to at least call at all hours. Waking up alone at 3 am with a serious low is less scary if you can phone a friend/family.
For me the biggest thing was setting up a routine. From when I ate to checking my bg to when I ordered my meds. I tend to be disorganized, but having a schedule saved my cookies a few times.
My advice to new college students is to be sure roommates, dorm mates or someone knows that you have T1 and how it affects you. And take it easy with the parties.
I wish my parents had shown me everything they did with health insurance in the year leading up to my leaving for college from how they picked their plan to what it covered. Also how to iron clothes.
It’s been will over 60 years ago. My answers probably have little value for young person’s today. I enlisted in the USN at 17 and never looked back.
Absolutely nothing special about finally living on your own. It’s everything you’ve been doing your entire life beforehand. On your own you create your own approach.
Take really good care of yourself and be careful when consuming alcohol. Make sure your friends know you are diabetic.
The tools are ever so much better than 40 years ago, use them wisely.
1. Find a good endo right away.
2. ALWAYS have several weeks of supplies on hand especially in areas of bad winter weather.
3. Have accessible glucose for low blood sugars (don’t count on having coordination enough to open that bottle of soda).
4. Tell your boss, local EMT services, friends and at least one neighbor about your condition and how to assist you.
5. Have written ’emergency’ instructions on the side of refrigerator should you be unconscious.
6. Have a CGM with ‘share’ features so relatives know you might be in trouble.
When I moved out on my own, I got married. The first 20 years my husband and I fought over my control of my blood sugars. Then, we went to an Adult Retreat run by ConnecT1D in Seattle. What a life changer that was! So, my wish is for more suggestions on how to explain Diabetes to a new partner/spouse.
I was never by myself when I was young. I moved directly from my parent’s house to my husband’s duplex when I got married.
Find a great endo! It really helps. Also a sensor and closed loop insulin pump help wonders.
Moving out today, is nothing like moving out 30 years ago. The whole landscape is different. Back then, we barely had human insulin available and finger sticks were an ordeal- my glucometer was a plug in kind- not portable. Basically, the advice is, your body needs care even if you’re feeling fine. It’s like cooking with a wonky oven – it’ll get the job done, but you better check on it often.
Told my housemates. Pre-blood glucose meters, woke up twice with paramedics in my bedroom. Luckily friends or family members called 911. (1975 and 1976)
Be excited, but be prepared ! Your on your own and fully responsible for self