Things diabetes has taken from me

Coping & Support
1

I am having a bad diabetes day today. My CGM is hurting me and ruined my workout, I had to deal with crazy numbers all weekend and almost died Saturday night. It got me thinking of how diabetes has changed my life and what it has taken away from me. Here is my list, do you agree?

  1. My good health, I used to be so healthy and never got sick
  2. Sanity, no explaination needed
  3. Money! Most. Expensive. Condition. Ever.
  4. Comfort, pain from the CGM, pump insertion, injections, blood draws
  5. My peace of mind, always worrying about what my BS is doing
  6. Weight loss, I had worked for 2 years to lose weight, finally reached my goal weight and then was diagnosed, gained 25+ lbs in 3 weeks!
  7. Independence, always need somebody to know/watch me in case I go to low and pass out or something, husband and family always worrying about me
  8. A healthy pregnancy, wanted to get pregnant in the next year and always dreamed of being a mom but now I’m wondering if it is even worth it. All the stress and worrying that I am going to mess up an innocent child, if I will have a miscarriage from having high blood sugar, not being able to get pregnant. Not to mention all the other risks like preeclampsia, spina bifida, and God know what else that I haven’t had the heart to google yet. People always say ‘diabetics can have healthy babies’ but only when they are militant about controlling their numbers and I’m going to be so worried the whole time and freak out whenever my BS goes above 140 because I know I’m doing damage to my baby
  9. A long life, I always wanted to live far into my 100s but that probably not happen now. I read that T1D takes and average of 15-20 year off your life. I am worried about that along with losing limbs, toes, kidney failure, blindness, deafness and all that fun stuff that comes along with high sugars
  10. My sense of hope. I used to be such a positive person. Reading the list above shows that is no longer the case.

I feel bad posting this. I don’t want to bring anybody down with me but sometimes it is so hard to cope day in and day out. Nobody in my life knows that I have to deal with everyday and are very dismissive about my fears and worries.

2

yup

thanks for posting this, whenever I think about infinity and beyond I can get upset about everything that diabetes brings.

you didn’t ask for advice, so ill be brief: please stop googling. you’ll kill yourself. our very own @Gina just had a healthy pregnancy, so did many members right here, so unless they have magic, you could have one too.

yesterday is gone. tomorrow things may not be like you see them. all you have is today, it’s a gift, that’s why they call it the present. stay in today if you can. the thing that helps me the most, is to try to be helpful to others. there are JDRF walks, diabetes camp counselling, you could just help 1 desperate person with a word of encouragement and you whole head will change.

i’ve been doing this for 30someawful years. it aint killed me yet. i am not better than you or smarter than you. you can do it too. heck you exercise, you’ll live longer than 60% of the “healthy” group without diabetes. hang in, we’re here too.

your loved ones don’t know how to help you, so they minimize and dismiss your feelings because of how uncomfortable it makes them feel. you won’t get that here.

all the best.

3

I’ve been there, too. I think the biggest struggle, at least for me, is just how personal diabetes is. No one else knows how I’m feeling, and diabetes doesn’t show on the outside. I think it’s easy for others to dismiss the seriousness of a disease that isn’t immediately visible.

With that said, though, don’t forget that you’re just having a bad DAY. It’s one day, out of the tens of thousands of days you’re going to be alive. I think you still have a sense of hope, too, even on this down day. You’ve acknowledged that you know diabetics can have healthy babies - there’s some hope right there!

It’s definitely not the case that successful T1D pregnancies only result from militant blood sugar watching. Many of the women on here can attest to having successful pregnancies despite higher blood sugars and A1Cs.

I think the statement that T1D takes that many years off your life is also outdated. We have incredible care now - our teams of endocrinologists, opthamologists, and GP docs monitor so many of the things that used to cause T1Ds serious complications. Of course there’s always a risk of things going wrong, but I hope you won’t let that deter you from just living your life.

It’s a good thing to just listen to your body; more people should know to do that. I know how frustrating it is to not be able to do a planned workout, but that’s just a time to let your body figure itself out and get back to normal. It makes me mad, too, but I know that eventually, I’ll be back to normal and not too far off track.

When were you diagnosed? I know the weight gain is so frustrating, but just remember that prior to your diagnosis, your body wasn’t able to use food properly. Once you were diagnosed and started giving insulin, your body could actually take in food the way it was supposed to. That’s a big adjustment for your body.

I’m so sorry to hear that you’re feeling down. I know that all of us have been there, but I hope if you have some free time that you’ll browse around on the different boards here and see how many people here are living with T1D successfully, even when they haven’t had perfect blood sugars or A1Cs.

I’m sending you virtual hugs.

4

Diabetes does come at a cost, but not all of what you said is true.

  1. Diabetes doesn’t make you sick. We aren’t any more prone to get a cold or flu or anything else. Manage your blood sugars and you’ll be as healthy as anyone else.

  2. Diabetes does drive you crazy but it also makes you grow up and live in reality. You have to face your own mortality. Most people don’t have to do this until they’re older.

  3. You’re right on about this. It does cost a lot of money.

  4. You’re right about this too. We have to endure a lot of painful and uncomfortable stuff, both physically and emotionally.

  5. I don’t really stress about my blood sugar. Just trust your body and if you feel weird then test. If you’re low, eat sugar. If you’re high take insulin. Then keep on living.

  6. You gained weight after diagnosis because your body was starving itself to death from hyperglycemia. This wasn’t a good thing. You’re right though that diabetes makes weight loss harder. Insulin primes are cells to open up to absorb glucose and store glycogen.

  7. This is not true! You can be completely independent as a diabetic. You aren’t an invalid. I have lived alone. Traveled alone, gone on extended backpacking trips alone. As long as you monitor your blood sugar and take care of yourself, you are okay. Especially in the modern era of CGMs.

  8. This is not true! I was not militant about my pregnancy and had a completely healthy baby. I got into tight control but it wasn’t out of fear, it was out of love for my child, just like I chose the best car seat for my baby. I was happy, relaxed and did not freak when my pump disconnected and I had a blood sugar in the 300s in my pregnancy. I corrected and went on. That’s just life.

  9. Type 1 diabetics in reasonably good control now have about the same life expectancy as non-diabetics. You really should take the time to learn about complications before you get upset about them. You’re unlikely to have an amputation unless you have diabetes and are also a smoker. Kidney failure rates are dramatically increasing because of ACE inhibitor drugs like lisinopril. Because of diabetic eye exams and laser surgery, diabetes may soon no longer be one of the leading causes of blindness. And I never have heard of deafness being linked to diabetes, no pun intended. =) Do you know what the #1 diabetes related complication is? Heart disease! So don’t worry about the gory stuff. Worry about the real stuff.

  10. Don’t be a drama llama. The truth is, most of us give a lot of weight to our feelings but our feelings are always changing. Having faith that things are going to work out will help you no matter what your circumstances. There are people who have had diabetes for 50, 60 and 70 years with no complications. I know a woman with TERRIBLE control who’s had 2 completely healthy pregnancies. Our bodies are incredible. When we give them the advantage of having fewer highs and lows, they have an even better chance of avoiding complications and seeing up through long and healthy lives.

And if you develop a complication, the world will not end. You will deal with it and go on. There are people on this site who have had kidney transplants because of diabetes. I know a woman who had a non-diabetes related leg amputation. Her life isn’t over. She is a cool, loved, happy person. So everything doesn’t have to work out perfectly to have hope.

Take care. -Jenna

5

I don’t mean to be a downer but, jennagrant diabetes does cause illness. that’s what happens. our immune system is week and cant fight viruses. luckily though we can do a lot more to fight sickness and death. I reacntly found out that my A1C was 7.7 which is the lowest its ever been. I used to get sick almost every week with my A1C in the 10’s and 11’s. but your right there’s ALOT of hope with the new technology. my method of feeling better is stuff that keeps my mind elsewhere. it will be ok.

6

I had a day like Fred’s yesterday and it was such a relief to know that other people feel the same way. It’s been 5 months since my diagnosis and just when I think I’m getting the hang of things, whoosh, a low in the 40s, ugh. Doing better now but the thing that set me off yesterday was making cookies for a cookie exchange (need cookies for family coming to visit for Christmas) and realizing that I just can’t help myself to a handful (!!) and a latte and munch away ever again. I just hate being so different from everybody else and I get tired of explaining. :frowning:

It is nice to be able to whine for a bit…and then just get back to doing what we all gotta do.

7

I like this post. FINALLY a place to rant that people get…I’m going to be the "Glass Half Full guy"
This is what diabetes has GIVEN me…

  1. A new appreciation for feeling good. On good days I really enjoy it.

  2. HOPE: I hope I get low enough so I can enjoy that Brown-sugar Cinnamon Pop Tart thats been sitting in my cabinet for4 months.

  3. EXCUSES: I can say something mean and blame the diabetes. I can tell someone how I really feel about them and get away with it. “I’m so sorry, I’m a diabetic and when I get low I say awful things that I never mean”

  4. PATIENCE: Especially when people ask “How did you get it?” “Did you eat too much sugar?” “YOU can’t eat that!!! you’re a diabetic.” or my favorite…“You’re in a bad mood…check yourself”

  5. UNDERSTANDING: Actual conversation…Them:“You’re a diabetic? You don’t look like one” ME: “What does one look like?” Them:“My Dads a diabetic and he’s really heavy and you’re not” ME:“So you’re Dad has McDiabetes?” Them: “Whats that?” Then I open my mouth and go on a mini-rant (See # 3) " I have Type 1, I didn’t eat myself that way, you’re Dad has Fat peoples Diabetes, it’s nothing like mine." So I had to work on my understanding or leave a trail of bloody corpses everywhere I go.

6.HUMILITY: When you’re in a crowd and suddenly find yourself below 50. The embarrassment of looking like a drooling, shaking mess. Humility by having to ask other for help.

7: SARCASM: “Is that a pager?” “Yes , yes it is. I just got paged, can I borrow your cell phone?”

8

Can I just say how much I’ve loved this post? Both the negative and positive :slight_smile: I’ll be following this for a while, thanks for everyone’s input!

9

I’m new to this website but not new to diabetes. I think this website would do me some good because for most of my life I felt I’m alone in this, my family does not understand, I don’t know anyone with this condition let alone type 1, ALL the frustrations that come with being diabetic all of the fears and worries and to finish it off I’m not in a good situation right now.

10

I have been type1 since 1976 when control wasn’t a spoken subject. Looking back at those times seem to be so primitive to what we are doing today. I’ve had 2 heart attacks, kidney failure, open heart surgery, double amputation ( legs), glaucoma, neuropathy, kidney transplant, etc. and I keep on fighting :slight_smile:

BTW - in August 2014 I was diagnosed as terminally ill because of a heart problem, but you don’t see me crying :wink:

11

Oh wow… u had both legs amputated? :frowning:

12

Diajetic - that name is awesome! You are cool.

Detroit squirrel - way to keep fighting! Today, you are my hero/role model. I hope you have a great day.

Jfarmer - some days suck don’t they? And others don’t as much, or at all. The best any of us can do (in my opinion), is keep trying as best we can, avoid all or nothing thinking, and if we have someone in our life who will, ask for some pampering or help or whatever you need sometimes.

I would say it is only since I got past the 30 year mark with T1 (last fall) that I am now able to say to myself - hey, you are tired (or strung out or angry or depressed) for a reason. Can you give yourself a break? You don’t always have to soldier on as if there is nothing wrong. Of course, this has repercussions - I call in sick to work more often. I skip events that might be fun sometimes. I take a lot of naps, because rest is helpful for me. My attitude to anyone who might say something is, “well, come talk to me after you have been managing this disease NON-STOP for even one year, and I’ll take your concerns under advisement.”

13

For me, I think of diabetes as a NOW problem I’m not much for thinking about the future. But with you all talking about the future… IM SCARED TO DEATH! I find real comfort in knowing there are others that are feeling the same “depression” or low points as I am. Nobody else in my family has diabetes so it is hard for them to really know what I am feeling. I struggle with being stressed out when I think about all the thousands of things I have to do each day not even counting the diabetes part thrown into it. But I am a believe in Jesus Christ and am a Christian. So I know in the end I know God’s plan will be the best plan so I’m not here to complain. I am here to see that this is not the worst thing ever to happen to me. The bad days will get better and when we think about the bad days just keep moving forward.

14

Jdkerwin,

Thanks for your lively and hilarious post. I agree and understand EVERY SINGLE ONE OF THESE. So, thanks for that. It’s nice to know someone else has a sense of humor about this disease. I hate it when I can’t joke with other diabetics about the things we experience.

-Omygollygee

Kcarmichael10,

As someone else who is also a Christian and follower and believer in Christ, I, too, have the hope of eternal glory that is to come for us! This prolonged trial of ours will not last forever. I think the one thing that has frustrated me the most about this disease is that it is the complete opposite of the gospel message. No matter what sins we commit, God forgives us and loves us. We have a clean slate once we repent. With diabetes? Not so much. There is no forgiveness of high blood sugar, it just is what it is. But I think that is one way diabetes has also made me immensely more grateful for the second chance we have in Jesus! Thank heavens He doesn’t love us like our pancreases do (basically, not at all). I hope your life in Christ helps you overcome this battle every day.

-Omygollygee

15

You know @jennagrant, the last thing someone having a bad day or feeling down needs to hear is “put on your big girl/boy pants and deal”.