I was diagnosed with T1 when I was 18 months old. I am now 20 years old and honestly I am so frustrated with having T1 I don’t know how to cope. Growing up me and my parents had excellent control over my A1C and overall Blood glucose levels. When I first started high school I started to have less and less control over my numbers. I was on an insulin pump for about 8 years and hated every minute of it. I hated being attached to a machine and was beyond tired of people asking me why I was wearing a pager. I finally went off my insulin pump my Junior year of high school. I am in college now and am still giving myself insulin injections before bed and every time I eat. I’m going to be really honest- I hate having t1. I want to ignore it, and as embarrassing as it is to say- I do. It’s getting to be time for me to take control before any long term issues arise. I want to get back on an insulin pump so I can be healthy. I am really struggling with getting back on one. I have been diagnosed with clinical depression and anxiety. I’ve been struggling with depression for 3 years. I’ve been on medication and was in therapy for a few months. I want to get back on a pump but I don’t want to feel like a robot. How do you guys wrap your head around all of this? I need help coping!!!
@SarahJohnson12 hello Sarah, welcome to Type One Nation and the forum, and the club no one wants to be in.
Can I also be really honest… after 40 years of being type 1… I realize, no more importantly, I accept that I hate it too.
When I was in HS and college, the thought of wearing a pump was the same as asking me to wear a hat with a flashing yellow light on it and a t-shirt that said “WEIRD FREAKSHOW” I told no one my secret and I would do anything to not be different. I would simply not eat if I had to inject before a meal. Sometimes I would not inject. All to keep up the appearance that I wasn’t sick.
I couldn’t do it forever. At some point I had to accept the inevitable conclusion that I AM sick, and that if I want to live, I’ll have to deal with type 1 and face my fears and self-hate. I could not do that part by myself. I needed help from friends and professionals… why did you stop therapy?
Anyway, my dealing with diabetes is around acceptance, and working on my badly damaged self-esteem. What do you feel when you look in a mirror? For my entire teen and young adult life, I felt contempt, anger, even disgust for that utter failure that was staring back at me.
I also play this or that. The reality is a pump is not going to save you. It’s not magic. plenty of T1’s use MDI and are fine with it. For me, pumping isn’t great…for me, pumping just sucks less that shots. =) it’s the way you frame ideas that shape your feelings sometimes… while this concept of sucks less is supposed to be funny, it also carries weight in my head - If I set myself up to thinking that a pump is some automatic miracle that is easy, fast discrete, and all I need is a pump and my sugar will be between 75-99 all the time and white doves will fly then I will fail. If I say it sucks less, that it isn’t discrete but it helps me when I travel or have weird meal times or need to stop basal because of activity… then I don’t fail because it aint all that… but that’s just me
making peace with yourself and with the acceptance that you have a incurable disease that will be with you the rest of your life, that you cannot control the fact that you have an incurable disease, that you did not cause your incurable disease, and that the only thing you can do is determine your blood sugar and manage it to the best of your ability… one day at a time, is the only way I found to have peace with it.
I fought until I could fight no more… battered and exhausted, I realized I was really just at war with myself. when I stopped fighting, it didn’t change any facts… but I felt better…
… and it’s not robot… it’s cyborg. huuuuge difference.
Please rely on the forum. If you can’t talk to a therapist, just spill here and those that resonate will say something. I can’t change you, all I can say is that i’ve been on that road too, and that I have found a way to get past it and have a good life… so far… and I’m not done yet.
Hang in there. I can’t tell you what will work for you, but I can tell you what worked for me.
I’m LADA - which means I developed T1D later in life. I had a very frustrating go of it: doing exactly what the doctors told me - resulting in a roller coaster of BG extremes and weight (belly fat) gain etc. for a decade.
What did it for me was reading the correct books, taking their advice to heart and in practice, and having great success.
I know I can’t “beat” T1D. I can hope for a cure in my lifetime, but meanwhile I have learned I can have some control.
What did it for me was reading Dr. Richard Bernstein’s Diabetes Solution book (and other books since) and learning about how insulin and food (carbohydrates) affects me.
I began a low carb diet and my T1D world has changed! Seriously! I feel completely empowered now that I know what was happening and that I can control it.
I can’t stress how going low carb (20-50g per day) has changed my BG - and my life. I have even decreased my meal-time insulin by 50% most days.
I stress you need a continual glucose monitor to do this as low BG becomes more common.
Sarah, that is simply my experience. Maybe you can draw from it. I realize it is different going through it at my age than yours so I can’t address those issues, but maybe if you have some success you’ll feel better about it.
I just want to say that I went from being frustrated and depressed to now getting joy out of beating my BG every meal. I went from PO’d at the spikes and lows to empowered watching my BG flatline.
Hi Sarah @SarahJohnson12, Welcome to the TypeOneNation Forum! Here I hope that you will find support, encouragement and more importantly will see that you are not alone. Not alone in having T1D but more importantly know that other people have gone through many of the phases [feelings] that you experience.
I’m in my seventh decade of trying to accept that I have diabetes and trying to figure out how best to live and to prosper and to not let my life be controlled by diabetes. I grew up with diabetes decades before there was “home” glucose checking and long before HbA1c came into existence so that there really wasn’t any way to know that stuff without a doctor visit and a hospital “blood sugar test”. I tried to follow the “rules” for a few years - maybe until I got through high school but then going to college I let things go - and stopped visiting doctors for several years. Yes, I got into “trouble” and never fully recovered.
I finally accepted that I had diabetes when I was in my thirties and realized that I wanted and NEEDED to be around to care for my wife and two children - yes, my wife although she didn’t push, certainly encouraged me to turn over a new leaf and take diabetes seriously and to take care of myself. In 1966 I was diagnosed with retinopathy, by the first doctor with whom my wife made an appointment for me, and I was told that I’d be totally blind within two years.
“Taking control” of diabetes has taken me lots of time and energy and over several years I have made a science of how to manage. I will share, we can never control TypeOne but we can manage effectively our diabetes. Pumps are not “Plug 'n Play” but with a little effort we can take advantage of their many features; like you I didn’t want to be attached to a machine so I took thousands of shots for 47 years before converting - now wish I had gone on a pump sooner. I began using a CGM in my 62 year with diabetes and now really like that.
My greatest “accomplishment” in managing my diabetes has been to allow myself to accept when I am not in range and not beet myself up for making a mistake like significantly miss-calculating carb counting.
Let’s continue talking!
Depression is a self fulfilling cycle. If you continue on this path, you will slide farther down, your mental outlook will create physical symptoms, and that will snowball the depression. When you are moving forward, towards some goal, the depression fades. Don’t let it control you. What do you want to do, and what are you going to do to get there? Ten minutes from now, tomorrow, next week, the end of summer, the year 2020, your thirties, retirement. It all starts today, not tomorrow. There doesn’t need to be a step one, a perfect plan, there only needs to be “does this moment help me or hurt me?” Every step forward is going to give you momentum, make you feel better, and give you confidence.
Youve already done the hardest thing, youve come here and admitted to us that you aren’t satisfied and you need to do something different. More importantly, you’ve admitted it to yourself. Maybe you can walk away from reading this and start doing things better, not perfect but better. Maybe going to see the endocrinologist and getting an insulin pump is the first step. It could be when you start having irreversible diabetetic complications that you do things differently, or never, or a million places in between. At some point, you will reach that point of frustration, not frustration of dealing with diabetes, but frustration of letting it put this cloud over you. Of allowing yourself to think it is too big a burden to handle. It is not.
You’ve done this before, you were a child then. You are a grown woman now, you could conquer the world if only you set your sights on that, yet you’ve allowed this burden to grow in your mind until it is immovable. You can do it again, armed this time with extra knowledge and insight, with determination because you choose to do it.
It IS too much to handle…BUT YOU CAN DO IT!!!
I have had Type 1 Diabetes for 55 years (omg!!)
I NEVER wanted that nasty pump…and NOW…I WILL NEVER give it up!!
Yep, its ugly ~ but I have embraced it. It is “my buddy” now.
There are a lot of different types of pumps now.
Just do some research on "types of insulin pumps.
I have a friend who works for the Juvenile Diabetes Foundation and she is a wealth of information. If you are interested I can give you here email.
I agree with “SpecialEDy” ~ you are an adult now and responsible for yourself. Just take the first step…make that appointment with an endocrinologist. That is step ONE!!
Let us know how it goes!!!
I would love to continue chatting on here with you…
I can TOTALLY relate to sooo many parts of the original post. I was dx’d at 5yrs, and denied the disease in any way i could. Somehow i’m now 50ish. Have been on pump for years, for me it does indeed suck a little less than shots.
Couple months ago, I was admitted to the hospital with DKA, not a fun time, but it has motivated me get back on track, um, ON track.
What has helped me the most was availing myself to an endo, and D educator (and communicating with them honestly, and between appts by messaging.
An eye opener for me, was the book " Bright Spots & Landmines: The Diabetes Guide I Wish Someone Had Handed Me". The Author GETS me, gets my past, my embarrassment etc, AND offered me the biggest tip i’ve gotten so far, “Reduce the carb intake”. This has sucked too, but is exponentially easier to dose for meals with low carb count. It also gives a lot of tips for how to do this. I LOVE LOVE LOVE this book!
I am 13, my name is ViviAnn. I was dx on May 14 2017. I have the omni pod. I recommend it to everyone it is easy, you can paint them so the dont look so weird. I love it, your bot connected to a wire it is wireless. You get a transmitter and pumps that you change every 3 days it is awesome. I also have a dexcom g6
Sarah - you are experiencing what we all have had at some point in time (at least those who have gone through the stages of acceptance). There’s no 1 size fits all to change things but just be realistic and take action to change what you can. Exercise is a great option not only for sugars but also endorphins to improve your mood. Know that despite all of the tools out there - we can’t really 100% control our diabetes. We never get a vacation from it. BUT - we can take steps and know that we have done what we can do to control the aspects we can. Feeling empowered in those areas will help. Lean on the T1N, stay positive as much as possible and march forward each day - one step at a time. Find the 2-3 activities that really make you happy and make sure to do at least 1 each weekend. We are all human, no one is perfect and life in many ways is suffering BUT you can find strength and wisdom I that and change how you view things. When something doesn’t respond as you expected - you can’t control that aspect but you can control researching it - try to understand why it happened (for instance metabolism of certain foods, etc). Knowledge is power to change things that we can change.
Stay positive, stay strong and know we are all here!
Hi @SarahJohnson12. I’ve been on a pump for 20 years and don’t mind it myself - I’m used to the tubing and personally am OK with people asking me questions although very few do. If you are thinking about going back on the pump you might want to check out the Omnipod. I prefer using the pump buttons rather than a “remote control” myself but some people love it. No tubing may make it a more discrete option for you.
For me, the process of acceptance and action has been in phases. I think that I am one who has to really absorb things over time. When first diagnosed as T1D, it was traumatic for me. I followed daily injection treatment, but, I was in such denial that I hid it from lots of people. It took a year, before I became comfortable enough to tell most people. Recently starting pump therapy has also been a big shocker for me. It’s like a whole new world. But, I think it’s another phase that I will adjust to. I know now what my options are. Now, displaying a pump or CGM doesn’t phase me in the least bit.
One thing that I have noticed about those who have T1D is that they are so brave. When you consider what we have to do, it’s no wonder. I don’t think we give ourselves enough credit sometimes. One thing that I learned from an excellent Endo team is to never beat myself up due to my BG numbers. I can read, ask questions, get help, but, not beat myself up over it.
I also found that attending conferences that support and educate on T1 diabetes issues is very helpful. You get to meet other T1’s and it’s place to relax, learn and laugh. To me, it feeds my soul.