Approaching One Year and Lost


(jenn.lee16) #1

So, I’m 17 years old (turning 18 on the 15th of January) and I was diagnosed March of 2017, so I’m approaching a new step just generally with life and college as well as the one year mark on the diabetes. I have seasonal depression and as the winter months get darker and darker, I’ve found it increasingly more difficult to manage the diabetes. There have been a few days in which I have not moved from bed and felt my blood sugar dropping but wouldn’t do anything about it despite knowing the risks. I just, I don’t know the whole beginning part of the diagnosis I was calm and felt in complete control. First few months, my family was super supportive and I still felt strong. More recently I feel like I’m even more of a burden on my parents than ever before because I can’t eat foods they like and cost way more financially and they seem super over it. Honestly, so am I. I’m over it and I’m tired and I just feel incredibly lost and I don’t know what to do. Like I know I’m in a safe place and my friends are there for me but I just hate this and how I feel like it’s hurt my family.

Anyways, my question is how do you guys feel less loss as it settles in more and more that you have this disease indefinitely and how do you push through the day to day? Also, is there any way to lessen the impact on my family?

Sorry and thank you.


(GL) #2

Hi Jenn,

I call these days the diabetes blues and they are no fun. I feel you on the eating healthy thing…it is way more expensive and I try to balance it out. My family loves pasta and white potatoes so I just eat the protein part of it and substitute the pasta for more veggies and have a sweet potato. I recently started to do a strength/yoga combo which has helped me with my diabetes blues and it doesn’t make my blood sugars drop like high intensity cardio does. You need to put yourself first and take care of your body. The first year of my diagnosis was the easiest and I was like let’s do this…then after a year I was like this sucks and I’m over it. I mix it up in the way I mange it with different technology when I get the diabetes blues. I first started on the Omnipod/Dexcom for a few years…then changed to the new Medtronic pump. These changes really helped me. The new medtronic pump truely helps my anxiety of always thinking about the disease and let it run me…now I know something else is looking out for me…but I do love technology! I hope you can get over your diabetes blues and know that we are all here for you! Reach out anytime!


(Wendy Spencer) #3

Hello Jenn-lee

I am mom to a teenage diabetic, so am looking at things from the other side. I am very aware that it might seem that T1 is a burden to a family, but believe you me, I - and I am sure most- parents don’t ever see it that way. It is three years since Kate’s diagnosis (almost to the day) and I am so grateful she is alive. Burden, cost, impact are not words that occur to me when I think of her diabetes. I cannot imagine our family any different than it is now. Of course I worry about Kate’s health, and wish she didn’t have this burden on herself, but it is no burden on me. Maybe when you feel stronger have a chat with your family - you don’t need to carry extra loads by worrying about them. Wishing you strength and peacefulness and a conscious decision to look after yourself.


(Dennis J. Dacey, PWD) #4

Hi Jenn-Lee @jenn-lee16 , I’m so happy to meet you. You and I were diagnosed at about the same age, I was semi-comatose on my 16th birthday, having denied to my family for months that I wasn’t feeling right because I didn’t want to be a burden, because of what is now referred to as DKA. But that was over 60 years ago.

At your age, your family is doing just what I believe they should be doing - that is what my family did - I’ll tell you more in a minute. You are at an age where you need and want to be somewhat independent - you mention enrolling in college where your parents / your family will not be constantly holding your hand and reading your BG values, etc. They are allowing you to grow, to mature and become a glowing person who can take care of yourself. Your family is showing love for you.

Now getting back to what I began above. Just this autumn, I was at a family wedding, a niece, where I spent a few days gathering, talking, reminiscing with my siblings [our parents had eight kids] and I learned a lot about the time when I was diagnosed and my first few years living with diabetes. Almost from the beginning I was, so I thought, accepted and treated just like all my sisters and brothers and no one ever let me believe I was a burden; we didn’t have much money but somehow at every meal the “right foods” ended up on my plate - and one of my sisters just told me why.; they all knew what I needed so ‘what if’ some pretended not to be hungry and offered me a slice of meat. Everyone worried and took care of me but didn’t let me know “, he’s not heavy, he is my brother”.

And Wendy @francesjean says from a mother’s perspective so well, her daughter is NOT a burden.


(Tracy) #5

I second this. As a mom of a 4 year diagnosed teenage son, I too do not see it as a burden. Sometimes frustrating. Just like yourself, we the parents get frustrated too. But never a burden.


(Tracy) #6

I second with the other Mom. It is never a burden. Sometimes frustrating. Just like you, we as parents get frustrated too. And most of that frustration is because we don’t know how to “fix it” for our kids. We as parents always want our kids to be healthy and happy. It’s our goal. And the cost and time (for doctor visits and tests) are just that money and time. They will never and can never replace a child.

As far as eating, at least what we have been told by my son’s doctors. Yes, he should try and eat healthy, just as everyone should, but as a type 1, as long as he is dosing for the carbs he is eating, he is allowed to eat whatever he would like. But as I repeat, as long as he doses for it. This maybe something to talk with your doctors as well as your parents about. So everyone is all on the same page.

My son has also been through the depression. Sometimes talking with someone outside of the situation helps. My son still gets the feeling that he is not normal and wants to be. But as I tell him, you are a normal teenager with just a little special in you. You can do anything you want to do, as long as you keep up with the checks and doses. He is finally starting to see what we have been telling him over the past few years. All will come in time. You will be able to get into your own grove that works for you. Make it so you own it and it doesn’t own you.

Good luck and always remember, you are not alone, we are all here for you. Many from both sides. Take care!


(Suzy W) #7

Hi @jenn-lee16, what you are feeling is perfectly normal for a T1D. With your blodd sugars constantly fluctuating all day it can make you feel tired and moody. Talk to your doctor about it. I used to workout a lot to keep the blues at bay, but recently went on s low dose anti-depressant as the workouts weren’t as helpful. It’s okay too. I fought against taking them for a long time. Try reading Think Like A Pancreas and/or Diabetes Solution - both written by diabetic doctors. They also both follow a ketogenic diet. Trying that diet alone made me feel so much better, not having the wild blood sugar swings. Even though some say eat whatever you want as long as you dose for it, that doesn’t always keep your sugars in range so you feel worn out and sad. Wish I would have changed my eating habits to ketogenic a long time ago. Just know what you’re feeling is okay and will pass. Diabetes hasn’t stopped me from biking, hiking, snow skiing, golfing… whatever I want. I don’t let it control me. Reach out anytime. XOXO


(brod) #8

Jenn-Lee, I have never responded to someone’s e-mail but yours struck me. I have had this cruddy disease for 35 years and could relate to what you are saying. I remember well the feeling–you better do this or we will cut your legs off. Nice, just what I needed to hear. I apologized to my sister after I turned T1 for all the times I told her, “Are you sure you can have that.” I have every reason to be upset because my religious community won’t let me drive because I had a low driving and now they are afraid of being sued if I got into another one–imagine being stuck in the house I am. So that is one good reason not to ignore lows. I think reaching out to others is a good step. Maybe since you are in school you could see a counselor. Not to see someone because you are weak or a psycho but because it does help to talk about it. I am wondering if there is any way you could make peace with being diabetic? What are the good things that you are blessed with because of this disease? (i.e. I don’t get drunk and wind up killing someone, I get to eat healthy, I don’t know–make a list). Remember you are a person with diabetes and not a diabetic–it doesn’t define you. Maybe volunteer at an ADA camp so you can be there for some 8 year old who can’t handle their disease.


(mikefarley) #9

Hi Jennalee. I am over 70. I have had T1D for a long time. Since we are stuck with this for the rest of our lives, it’s very important to learn how to live a full life with diabetes. I am in relatively good health, enjoy life - most days - :slightly_smiling_face:, and remain physically active.

You are going to live a long time. If you learn how to manage your diabetes, and find what motivates you to do what it takes, you will have a good life. Think about what brought you joy in the past. Do that! Research online to find how others are coping with how it affects their diabetes. Trust your parents and rely on them, they love you, but take more and more responsibility for managing your own diabetes. As you mature, you’ll be on your own more, so you need to transition toward taking care of yourself more. You can do it.

You will have bad days, but as you work through the realities of T1D you will discover you’re having more and more good days.


(tomlinn) #10

It’s important to fight. I look at each day week month as a competition, each BG a discovery and something to use to benefit my next fight. Bear in mind that important developments are underway which gives us all hope…and hope is so important. I established a Flipboard account [Flipboard is a news aggregator] and flagged those topics relevant to T1D such as T1D, Immune System, Gut Microbiota, Insulin, etc…this helps me when i go see my endocrinologist… i did not dump my GP doctor but did find an Endo guy who is on top of all the stuff that is going on…i keep my GP informed of course. I joined a local T1D club to compare notes etc. Importantly, as you know by now, this disease is managed by you, not your doctor, parents or friends. You are the one … no one else…so learn all you can and act accordingly and fight…I think giving up is the most harmful thing you can do to your management of this awful disease for it will feed upon itself

Tom


(srozelle) #11

Just adding to the chorus of parents. It is SO not a burden helping my daughter with T1D. Seriously. The same way it’s not a burden helping my son, who doesn’t have it. Raising our kids to be self-sufficient, contributing members of society is our job. It’s what we signed up for. And since each kid is different, each one is challenging — and rewarding — in his or her own way. Trust me. As special as you are (because we all are), you’re not so special as all that. Your family loves you. It’s a lousy disease, but you’ve got this.


(wadawabbit) #12

Hi. I see you’ve gotten lots good feedback about family, diabetes control, and diabetes associated depression. You mentioned you suffer from seasonally associated depression as well. Not to make light of it (no pun intended) but some people find that “sunlight light bulbs” are very helpful. Something about mimicking sunlight affects the mood. You might give it a try. Sending love your way.