I am losing myself to diabetes


(Alexus) #1

Ive been a T1D for 6 years now and I still cant get it under control. Everyone says do this or do that and your blood sugar will be fine. Its not that easy. My grandma thinks she knows everything and if my blood sugar is even an inch above 120 she yells at me because it’s “too high”. My dad makes me show him every single shot and every single blood glucose test. Im getting tired. I dont want to have this disease anymore. Im the only diabetic at my school and it sucks. Im so alone and so so so lost. I try to talk to my mom but she doesnt get it. Nobody understands. I think I’m going through a diabetic burnout because its getting to a point where I dont want to do it anymore. Im tired of the stereotypes like you cant eat sugar or youll go into the hospital or oh you have diabetes isnt that because of weight. I dont know what to do and im just sinking deeper and deeper into the lie that diabetes is me. All i am is diabetes. My mom even told me so. Anyone who wants to talk or chat feel free to snap me @lexus_lover54 or insta @lexiii_is_da_best.


(joe) #2

@Lexi_2002 hi Alexus

Iv’e been a T1D for almost 40 years now and I still cant get it under “control”, if control means perfect blood sugar all of the time.

I don’t want to contradict your parents or grandma, but for t1, under 160 mg/dl is pretty good. If you are trying to stay under 120 always, you’ll have a lot of lows. I think it’s a good time for your parents to go to an endocrinologist, so they can learn what you already know.

a word on parents. your parents are likely very scared that you have a disease and they have their own emotional issues to work through. they may feel much more secure if your blood sugar was perfect all the time. it may ease their anxiety (and believe me, you can’t understand a parent’s worry until you are a parent), it may ease their guilt that you are sick and they can’t help you if you have no diabetes symptoms.

diabetes will be what it always has been., it’s a lifelong struggle to hit a tiny blood sugar target so you don’t feel sick and so you aren’t dead. we use dangerous drugs, inaccurate bs meters, and have to make decisions every hour or every minute forever with no time off for good behavior. it’s a struggle because it’s painful and unpleasant, with a high risk of feeling sick and the best job you can do you end up feeling normal for an hour.

still - once you get past this burnout/depression, once you stop hating diabetes (and maybe yourself for that matter) it can and does become your routine. once I stopped wasting energy in hating diabetes and in wishing I didn’t have it anymore, I kind of found a peace and began to re-discover the things that I really enjoy. I also had the energy to learn and do more new things as well. I get irritated when people say “diabetes won’t stop you from doing the things you want to do” because I wanted to be a commercial pilot… but after a while I discovered that that wasn’t the only thing I wanted to do.

anyway there are a lot of people here who get it because we have to live it too.


(Dennis J. Dacey, PwD) #3

Hi Lexi @Lexi_2002, what you have experienced during your 6 years living well with diabetes - all your ups and down, frustrations and fending off “good intentioned advice” - is very much like what I’ve gone through many times in my 60+ years living with ‘our blessing’. My little bit of advice, just try to do what you know - you sound very intelligent and knowledgeable about diabetes management - and live a fulfilling life.

Like @Joe, I do not want to contradict your well-meaning grandma or parents but they appear to be using the “80 to 120 mg/dl” target incorrectly. That 80-120 target was in olden days one of the criteria for diagnosis - now, ADA recommendations are to consider any reading outside 90 - 140 as ‘possible’ indicator that a person has some type of diabetes. Your mom’s suggestion that you talk with other people with T1D is great advice - I’m here to ‘talk’ anytime on either open forum or using the Message feature. I had diabetes for about 20 years before I met someone - a young babysitter who watched our kids - who had diabetes and she taught me some good stuff. My thought is that TypeOne can never be controlled, but it can be very well managed - just yesterday a long-serving endocrinologist told me - after physical examination and reviewing lab tests and CGM graphs - that my target glucose range of 80-180 was ideal for me; your target may not be the same as mine.

You have taken a step dealing with “burn out” just by sharing here with people who understand living with diabetes - Welcome to TypeOneNation! We are here to share and understand.


#4

I am 14 and I have been diagnosed for four years. I have had almost the same problem, in reverse, with well meaning relatives being afraid of “low”blood sugar (anything below 120). I don’t know if this will help, but I’d say that it has definitely helped to educate them through their fears, and to hear from an endocrinologist what counts as a low blood sugar or a high one.
Stereotypes can be such a pain, I try and just think how if I were in their place I would definitely not ask that ridiculous question :joy:


(Dennis J. Dacey, PwD) #5

Hi Lilly @Lilly, very well said and thanks for posting, Two different endocrinologists have advised me to set my lower target limit above 80 mg/dl; currently my pump minimum is 100.

And @Lexi_2002, what I didn’t say in my above post is that the 80 to 120 mg/dl is based on blood from a vein [lower than fingertip] and after fasting from all food and drink for 10 hours. An interesting experiment you could perform is have “non-diabetics” check their blood glucose 60, 90 and 120 minutes after a family meal where everyone eats the same - I suggest that your BG may be lower than some of the others. An opportunity for togetherness and learning what you are constantly up against.


(Alexus) #6

Thank you so much this really helped!


(Alexus) #7

@Dennis thank you so much for your kind words I’ll take this to heart and think!!


(Alexus) #8

@Lilly right! And it sucks just dealing with the lows and highs as well we can never seem to get it right can we​:joy::joy: but I know that with other diabetics here to talk I’ll get thru this and well get thru it


(Justice Remington Cagle) #9

It’s funny my situation is EXACTLY the same, I get it.


(Dawn) #10

Hi Lexi,
I am a mother of a recently diagnosed 6 year old and am learning all I can about diabetes care. For fun, I (the non-T1 mom) wore her Dexcom monitor for a few days. I ate a bowl of Fruity Pebbles and shot up to 160. To go a little out of range is okay as long as you are able to come back into target within a short period of time. It breaks my heart to hear that your parents/grandparents are placing additional stress on you to keep them under 120.

When we talk blood sugars at our house, they are never good or bad… just high, low, or in-target and we try to figure out what we can do differently to try to keep her closer to the target range. Have you ever heard of Sugar Surfing? It is a method of diabetes management by Dr. Stephen Ponder. There is also a facebook group that talks about surfing methods. This might be something you could benefit from. A new method to try and revive your passion for taking good care of yourself.

If you ever want to talk about your diabetes care, feel free to reach out to me. I’ll always be a listening ear full of support and love. I’ll never judge or criticize your decisions or numbers. whosthebos913@gmail.com
Dawn


(anita) #11

i would not mind helping you out. i am a type one diabetic for 56 years. you did not say how old you are. that would help.

Anita


(Janice) #12

LEXI, I HAVE BEEN A TYPE 1 FOR 64= YEARS AND I AGREE WITH EVERYONE ELSE. ONE THING I HAVE FOUND OUT OVER THE YEARS, IS THAT MY BODY NEVER READ THE INSTRUCTION BOOK. WE ARE ALL DIFFERENT… I NEED TO KEEP MY BS ABOVE 140. ONE OF MY DOCS SAID THE SCALE BEING USED WAS JUST A GUIDELINE NOT CARVED IN STONE…MY PARENTS DID THE SAME THNG, BUT THEY WERE GIVEN THE DOOM AND GLOOM SCENARIO SINCE THEN THNGS HAVE CHANGED… YOU NEED TO FIND OUT WHERE YOUR BODY WORKS BEST, I MEAN FEELS BEST, NO FATIQUE, NO BRAIN FOG. ETC. ONE THING YOU NEED TO KNOW AND YOUR DOCTORS WILL AGREE(IF THEY THINK ABOUT IT) YOUR BRAIN USES SUGAR AS FUEL, NOTHING ELSE. IF YOUR BRAIN DOESN’T HAVE ENOUGH FUEL IT WILL STEAL IT FROM YOUR NERVES (YOUR NERVES ARE COVERED IN GLUCOSE ALMOST LIKE THEY WEAR GLOVES) IF YOUR BRAIN STEALS THE GLUCOSE TO FEED ITSELF YOUR HANDS AND FEET MAY HURT, IT IS CAL;LED NEUROPATHY, AND THE BEST WAY TO STOP THE PAIN IS TO RAISE YOUR BS. A LITTTLE, NOTE: IF THIS HAPPENS TEST YOUR BS THIS WILL GIVE YOU AN IDEA OF YOUR NUMBERS WHEN THIS HAPPENS, ADJUST YOUR BS ACCORDINGLY. YOU MAY BE THE ONLY ONE IN SCHOOL, BUT IT MAY ALSO BE AN OPPORTUNITY TO EDUCATE EVERYONE ELSE. I HID MINE IN SCHOOL, BAD IDEA. IDEA: THIS MAY BE TOO MUCH BUT KEEP A LOG BS #'S WITH FEELINGS ie: FEEL GREAT BS 110, FEEL BAD BS-75 IT MAY HELP YOU TO DETERMINE IF YOUR BS IS TOO LOW OR HIGH. DEPRESSION SOMETIMES IS A SIGN OF A LOW BS, FOR ME IT’S BELOW 95, OPTIMUM FOR ME IS 135-165. WE ARE ALL HERE TO HELP YOU, AND ONCE WHEN EVERONE UNDERSTANDS WHAT IS BEST AND BACKS OFF A BIT, THINGS WILL GET BETTER… YOU ARE RESPONSSIBLE AND ALL THE YELLING AND “YOU ARN’T DOOING IT RIGHT” ENDS, THNGS WILL GET BETTER. MAYBE YOUR DR. CAN GET EVERYONE TO BACK OFF, SUPPORT IS GREAT BUT SOMETIMES IT GETS OUT OF HAND. UNTIL YOUR FAMILY HAS THIS DESEASE THEY WON’T GET IT. YOU ARE THE ONLY ONE THAT KNOWS HOW YOU FEEL. THE ONLY THING I AM GOING TO SAY REGARDING FAMILY IS THEY DON’T THINK YOU KNOW WHAT YOU ARE DOING, AND THEY WANT TO MAKE SURE EVERYTHING IS PERFECT, THAT WAY NOTHING CAN GO WRONG-IT DOESN’T WORK LIKE THAT AND IF YOUR #'S ARE OFF THAT DOESN’T MEAN YOU HAVE DONE ANYTHNG WRONG, SOMETIMES THINGS ARE OFF FOR ALL KINDS OF REASON. DO THE BEST YOU CAN BUT YOU CAN FIGURE NO MATTER HOW ARE GOOD YOU ARE “PERFECT CONTROL” CAN BE A MYTH. PERFECT CONTROL IS RARE IN MY LIFE. WE ARE ALL HERE TO HELP, IF YOUR FAMILY WANTS TO ASK QUESTONS, THATS GREAT WE’LL ALL HELP. DO NOT LET DIABETES CHANGE WHO YOU ARE, YOU AE PERFECT, INTELLIGENT, CARING, BEAUTIFUL AND YOU JUST HAPPEN TO HAVE DIABETES BUT YOU AE STILL PERFECT AS YOU ARE…( I HAVEN’T HEARD IN 64 YEARS OF A PERFECT DIABETIC. THINK IT’S A MYTH) DO THE BEST YOU CAN AND LIVE YOUR DREAMS, DON’T LET DIABETES STOP YOU. BYE JAN


(Eric) #13

Technology and medical science are wonderful things that make our lives easier, healthier and often simpler. Don’t neglect the tools that are available. Consider using a GCM like a G6 or Freestyle Libre (which we use on our daughter). Also, look into clinical trials. There is some very interesting and revealing things coming from T1D cases trying the BCG vaccine and seeing a continuous improvement in their HBA1C scores for 5 years in a row or more. Look at the artificial pancreas coming from ILET and several other companies to hit pivotal trials and possibly be available as early as 2020.

Do not isolate yourself in a bubble of perceived failures and unmet expectations. In any endeavor, one simple principle always holds true: USE THE BEST TOOLS FOR THE BEST RESULTS. So go get some new tools in your toolbag, and get some new skills with those tools.


(Larry1) #14

I can relate. I’ve had TI Diabetes sinc age of 5 and I am now 63 yo. Was made fun of at school etc. so I learned how to fight real well, karate works good as well as judo then they all stopped making fun of me after they got their A_se_ kicked. But back to your issues, sounds likes some of your family members need to be educated about the disease, probably by you and are you using an insulin pump and CGM? They make living with and controlling the disease a lot easier, also helps to keep your Aic at good level. My email is louance@gmail.com if you need to discuss further


(DDrumminMan) #15

I’m sorry to hear of the troubles you are having Alexus. Compared to some on here I’m a D newbie of 41 years.

You are correct in that it’s something never goes away or never sleeps. I want to write a song someday called “Insulin Never Sleeps”. But anyway …

You have also discovered another aspect of it, no one knows about it but everyone thinks they do. It is frustrating.

I was shocked when I got this you can’t eat sugar thing at work a few months ago. I thought everyone knew by now, but evidently not. The way I try to deal with is that there are a lot of diseases I or my family members don’t have I probably have misconceptions about too.

I would suggest that you have to get somewhat of a thick skin and stand up for yourself when they make demands on you that you know are not medically sensible. Not easy I know.

Like someone else said, it would be a really nice if Grandma and your parents went to a diabetes education session. diabetes educators can do this. When I met my wife I had a son with T1D. She went to a session like this and was then able to take care of him when I was not home pretty well. She understood it a lot better, but of course no as much as you or I.

Also, do you have a CGM.? I got a FreeStyle Libre a few months ago and it has helped a lot to always know where you’re at without making yourself bleed.

I am gong to side with you parents on checking your doses etc. I understand your frustration with it, but try to be patient.

Diabetes control is funny term. Doctors and nurses etc talk like if you just manage your diet and insulin you’ll be good which causes many to think if you’re high or low it’s because you made a mistake. YOU DIDN’T. Just the way it works. There other factors than diet/insulin/exersize that affect BS that we don’t understand. Often times I’m just trying to keep it between the shoulders when things go whack (which definitely happens).

From my experience you can still live an active fun life achieving goals. But it will always be something that is always there that you have think about throughout the day (but not every second or minute) that other people just don’t.

Please try to keep a positive attitude and realize that things will be OK in spite of it all and GO FOR IT!!


(Jennifer) #16

Hey Lexi, I’ve been a T1D for 25 years. We have all been to the point you are at. It’s frustrating and so difficult to keep in check. It’s a rollercoaster ride we are on daily. God says he will never give us more than we can handle. So he must think you are a strong person! Educating your friends and family is so important! It will help everyone involved to understand your daily struggles and successes! Please know you are not alone! We are right here with you! [quote=“Lexi_2002, post:1, topic:60522”]
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(flebeccaann) #17

Hi Alexus,

I’ve been T1D for 15 years and I’ve gone through diabetes burnout a couple times. It feels so hard to care about diabetes and taking care of myself. I know a little bit of what you are feeling. Check out these links to hear other first-hand stories and how other people dealt with burnout:
https://collegediabetesnetwork.org/content/invisible-moments-diabetes-and-mental-health
https://collegediabetesnetwork.org/content/diabetes-burnout-college
I hope this helps!