Getting through the pain and struggles


(AML127) #1

After 32 years of struggling to understand why I deserved this disease and why I didn’t and don’t get the help that I need. I know my life has been wasted for these years. I’ve accomplished very little in my life and not from a lack of trying.
Diabetic retinopathy restricted so much for me including. career wise. I so desperately wanted to be either a diabetic educator or rn. I had such big dreams. But none have come true.
I’m so tired of fighting this battle of t1d that I simply cannot beat.
I’ve been given a lot of false hope from
Religion and ‘prayer’ so I know that
Is False and
Definitely not helpful.

So how do y’all get through the pain
And struggles of emotionally and mentally coping?


(joe) #2

hi @aml127,

a couple of funny things I learned about prayer, higher power, and things of this nature, if I pray for all my troubles to go away… they don’t. if I pray to be a zillionaire or famous, or popular, it doesn’t help me at all.

also - if I pray for patience… I tend to get troublesome things by the dozens

the sum of what I have come to understand is that being angry with diabetes or being angry at myself, leads nowhere. in order to find peace with myself, I first had to forgive myself from the failure of getting sick, and I had to stop looking for the place to put my blame - be it diet, viruses, hexes and witchcraft, or even bad luck.

there is a language I had to learn about letting go of things. I considered myself a warrior I considered myself so tough for not “giving up” that I could hold on to my hate and anger for so long when all it was doing was hurting me. see, I never really got what “let go and let God” meant and so I never identified with it - but a very good friend once put it another way for me that even someone as thick and stubborn as me could get… he said simply: “let go or be dragged” and I finally got the point.

anyway - I neglected my diabetes for decades and then turned things around. it’s never too late to take good care of yourself, to develop your talents, to start a new life, to go back to school, or even to start a new attitude. you get to decide.

for me - i just take the things I get in my life as things to help me learn and understand. nothing more, nothing less. the universe does NOT owe me a favor, so I stopped asking. I have found people suffering way more than me and found them to be able to be happy.

I hope you put down your weapons. I hope you can find peace with this because I am guessing that it’s the fighting, not the disease, that is making you exhausted.

good luck to you.


(BookwormNerd13) #3

I relate to your post far more than I should. I’m lucky that I haven’t suffered from any serious complications and that I have a family who cares for me and helps me manage this condition. But frankly, it still sucks. I end up blaming myself whenever I have a bad number, and that just makes me feel anxious and helpless and generally just awful.
Talk to someone, if you haven’t already. I made the decision to tell my family what I was feeling and it’s one of the best choices I’ve ever made. The truth is, no one–NO ONE–can get through this alone. We’re just not meant to. That doesn’t mean you’re weak or “not good enough”. It takes courage to ask for support. And it’ll help.
Don’t think of T1 as a battle, because if you do, you’ll end up feeling hopeless (as you may be right now). Because really, who are you fighting? Yourself. And that’s no fun.
Instead, I like to think of it as a race. A super long race. And every finger prick and insulin shot is another mile. At the end of the day, you’ve finished a lap! And then you start over.
Idk, it’s not the greatest metaphor. But it helps to think of it as something that you can reward yourself for when you manage it, rather than a fight you can’t win.
Stay strong. We’re all here to support you.
–Abby


(Dennis J. Dacey, PWD) #4

Hello @ami127,

It really won’t help you much for blaming the world or some one for you getting this diabetes thing. I’m suggesting that you try to accept your condition and move forward and try to fulfill your dreams. I made the mistake early of denying that I had diabetes and failed to take even moderately good care of myself; as a result I had to drop out of college - couldn’t stay awake - after only one semester. So I found a job, found what I was missing and decided later in life to return to college, nights while working and raising a family. OK, I fulfilled a dream, graduated with high honors and my kids were there to see me with diploma in hand. Then while applying myself to the business world moved up in various companies to the point of being named President / CEO of a national firm with worldwide operations. You could become the educator for PWD!

I was too diagnosed with “diabetic retinopathy” - back in 1966. Sure, I was told I’d be totally blind within two years. So what did I do?, I found an ophthalmologist who had a dream of harnessing a laser beam to “fix” the retina - I volunteered as his guinea pig - and I’ve seen much ever since.

Try not to put limits on yourself just because you have YOUR diabetes to manage.


(AML127) #5

Thank you! I heard “let go and let God” so much when I was little that I despise that phrase. My parents turned to Christianity for them to have hope that I be healed (in my opinion). Of course I never got healed…like no other t1d has. But when healing never came. That was my fault according to them. And whenever we were told “let go and let God” that meant that my parents were about to take my insulin and put everything in gods hands. Which meant I was going into DKA and would be waking up in ICU in a few weeks… Again because I never deserved healing nor insulin. So I absolutely hate that phrase.

I’m so glad that you found your way and your answers. But I certainly have not. I do know this much - I don’t pray for anything. I don’t deserve anything from God if there is a god. And the world owes me nothing. To me prayer is false hope. False hope for healing that doesn’t occur. False hope for solutions. And false hope to being a solution for me.
If there is a god. He doesn’t love us all. Only the special ones and I’m not a special one. This disease sucks and there’s no healing and no one solution to “fix” it.


(AML127) #6

I’m so glad you found success. And I’m glad the laser helped you. I’ve had many laser treatments, surgeries, and retina injections but there’s no hope for my left eye. My right eye is better but still has bad days. And it is hard to find success when you can’t consistently see. I’d love to return to college. But there’s no funds for that. And who wants to hire someone who can see “sometimes” and you never know when that will be. It’s all too difficult. This disease gets too difficult and affects every aspect of my life and that’s my issue with it.


(AML127) #7

Thank you so much!!!
I’m glad someone can relate. I’ve tried talking to my husband but he says he doesn’t want to hear it. Basically it’s my issue and I need to deal with it ALL. My family doesn’t even understand my disease or check on me. So they certainly don’t care to hear about my struggles or emotional issues dealing with it. I do have to deal with it alone. But I don’t want to. I do want someone who’ll listen and who cares. But you can’t MAKE someone listen or care. I just wish I could make it all go away. The disease. The emotional strain. Everything.


(Summer) #8

Thank you! I needed to hear this, you’re so right it’s not a battle it’s a race. For so long I’ve hated myself for this disease, I’m trying to turn that around now by better managing my Diabetes. Recently I have found solace in writing in a journal, I can get it all off my chest and not feel judged by everybody around me. I’ve tried talking to my family and friends (who are all in the medical field) and I just always feel like they want to understand but just don’t. They know the textbook version of the disease but not what it is actually like emotionally to live with it. One of the many reasons I joined this group.


(sneathbupp) #9

Hey aml127, I also can’t talk to my husband about. He doesn’t want to hear it and doesn’t think I should even be thinking about it outside of taking insulin and carrying snacks for the lows. He says you can turn it into a big deal but it shouldn’t be. So not helpful. That’s why I find these forums handy. It helps that I’m not alone. I hope you can find strength and use this and other support groups to help buck you up.


(SuperSam101) #10

@aml127 prayer will not cure. Prayer is meditation, god will decide whether to listen or not. Probably not, but it’s always worth a try. Maybe just maybe he puts some sense into this corrupt world we live in. Unless it’s just me…and my country is corrupt…or something.


(AML127) #11

Thank you all so much for the advice and encouragement!!!


(AML127) #12

Very true! It is a big deal and if you don’t treat it as a big deal, you may not get a second chance to prioritize this disease. It’s a lot of work, planning, stress, and anxiety. And having true help and support would be so valuable!


(AML127) #13

Very true! It is a big deal and if you don’t treat it as a big deal, you may not get a second chance to prioritize this disease. It’s a lot of work, planning, stress, and anxiety. And having true help and support would be so valuable!


(AML127) #14

I think it’s hard not to hate yourself with t1d. But it’s something you can’t let control you and your feelings. It’s so hard. I was once told, “if you don’t control your Diabetes- it will control you”. I try so hard to control it but it still controls me.


(Summer) #15

I feel the same, it’s like every time I get ahead something knocks me 3 steps back…


(linda) #16

I love this… Thank you for sharing… I will pass it along to my daughter.


(AML127) #17

@Gcrepeau2012
Awesome!!! I’m here if you ever need me. I would have appreciated advice and help when I was younger and even now. After 32 years with this disease, I still have a lot to learn. But I’ll help others if I can.