I think I may have scared Matt away with my epic conversations. And so finally, I turn to everyone else on Juvenation (seeing as my head’s imploding and I think it’s safe to say that 1) I haven’t the faintest idea how to decipher these feelings, and 2) I need help from the Juvenationers. (whoa, we sound like super heroes!)
Here’s the gist: My parents are thrilled that I got my A1c down a little more. I'm annoyed. After having the numbers go up the appointment previous to that, I was incredibly disappointed. I tightened it all up, or so I'd thought. Started keeping a log book again, really watching my numbers... so I don't understand how or why that all got away from me by my next appointment to the point where it barely budges? It's not that I'm not dedicated, or willing to do whatever diabetes pulls on me. But it's just figuring it out that gets me; I wish it were more like math. Eat the same thing, get the same blood sugar. If only, if only. Pipe dreams. I can't even begin to figure it out why I feel isolated lately. Maybe because I don’t have diabetic friends where I am? It’s not like usual, when I feel like people don’t “get it” – it’s different. I like hanging out with my friends, but their problems seem especially petty to me lately. I could care less who asked them out, what they're wearing next week, who said what... it all seems like nonsense to me, and lately I'd rather they move on to something more important and worth while. And it seems like would it kill them to help me out a little every once in a while?
I feel lost, in a way between both the diabetic world and the non-diabetic world. Before I was on Juvenation, I thought everyone who went through this chronic illness felt the same as me, thought the same as me, seemed the same way to other people as I do. But then there's always the few occasions where I've met diabetics who correct of their CGM, refuse to test their blood sugar, skip insulin because they're sick of it... and even though I can see where people who partake in this sort of behavior are coming from, I have always thought it was common sense to do a finger ***, an obvious necessity to check blood sugars, and important enough to live than to let the annoying factor get the better of one. But I don't see that in a lot of people? I'm not talking about you, or a lot of Juvenation members. I just thought that if I wasn't exactly like every other non-diabetic, I at least had to be like the other diabetics. But it doesn't always seem so.
As far as friends and people go, it's felt like there is an extremely slim chance of people getting to know me. I just don't understand how someone could like someone else more than they hate diabetes... I don't think I'd choose it recently. Why would anyone else choose to deal with it when they can have the freedom not to?
I think I'm more afraid of not being myself, or who I thought I was. I'm afraid that maybe I was fooling myself all these years with diabetes, that I'm not as strong as I thought I was? Or made myself out to be? Maybe I thought I could handle it, thought I could do well, care enough, be enough, do enough to make everything OK. But maybe I was just kidding myself, and this is who I am. The 470. The suspended pump. The lost.
If anyone has ever, ever felt like it, or just has feedback – I think I’m forum-ing and blogging this one – it’d be an enormous help!! I hate feeling like this, but even more so I hate being unable to figure out what’s got me feeling so down. (and I think I’ll ward this off before it comes: it’s not depression J )
And it'd be absolutely FANTASTIC if the real "Alyssa" would just let me know she's still here -- whoever that is.
Right now may be a tough time for you, you paid more attention to your diabetes and didn't get the results you were hoping for. This doesn't mean you are the "420" or anything else. It means that A)you tried, and thus have motivation and self control, and B) the fact that you are upset shows how important this is to you. It sounds like you want to call yourself a failure by not reaching your A1C goal, but it sounds to me like you are anything but that. Giving up the goal of perfect control would be a failure.
Alyssa,
I went through the same then when I was 15-16 years old. It seemed like no matter what I did no one would understand me. Then hearing everonye else's problems was like wow.... thats all you got going on? The one think I can think of is find someone either on here or in your life that you can talk to. Being a teenager is hard enough these days let alone going around with diabetes. It can be done though. You have alot of help and support you need on here. I wish this site was around 10 years ago when I was a teenager and needed some help. I do have to ask just one question though... How do you know its not depression? I would have never thought I had it back when I was teenager, but after talking to people I went and got it checked out and the people are very helpful. Anyways need anything dont be afraid to ask.
Josh
Haha, thanks, Josh. Like I said, I was trying to talk it out with Matt but I really do think I scared him off :)
As far as depression, I only know because 1) we've studied it in school and I don't feel the same sort of stuff applies to me, 2) I have some faint ideas of stuff that's made my mind so jumbled, so it's not this "inevitable I don't know why I'm bumming" sort of sensation, and most importantly 3) Along with a social worker (by day – I’m sure by night she’s some sort of psychotherapist they make all diabetics see), the doctors also make me take depression tests. And I'm OK. :)
Thanks though, to both of you, I appreciate your responses :)
I see.... Well thats good that the doctor makes you do all that stuff and that you have a social worker to talk too. When I was a teenager I didn't have any of that. Yes my parents would talk and listen to me, but when your a teenager who wants to talk to their parents? I know it was about the last thing i wanted to do.
Like I've said before let us know if you need anything as we will be here to help as much as we can.
Josh
Unfortunately, the social worker isn't near as helpful as I'd like. All she seems to be fishing for is information on whether I'm taking insulin and if I'm supported by friends/family. Ever since I've talked to her, I don't think she's once asked how I handle it, what I think about it... just what others are doing with/for diabetes.
And again, thank you, Josh :)
Yep, you scared me off. Big time. :-P
WARNING - extremely long post.
Your rant couldn't have come at a better time. It's really opened my eyes and given me a clear view how I could do better with my diabetes. I'm going to respond to your post with a story about my tonight. Self-centered? Yes, a bit. Proves my point? Absolutely.
So I was at my sister's house. She borrowed my old meter to test her blood sugars here and there ever since she found out my brother was diagnosed. She just wanted to be sure her sugars were normal... they are.
We were on the computer and she saw a post by my sister in law about my brother Jason's (her husband) new T1 diabetes diagnosis. She posted an awesome blog about diabetes etiquette (http://www.behavioraldiabetes.org/downloads/Etiquette-Card.pdf), but my sister laughed at #9.
I really like #9. Whenever my family asks, or tries to peek without me telling them first I NEVER tell them. I'll tell them if I feel like it, but if I don't feel like it then I just keep it to myself. Anyway, shortly after reading this I was testing and my sister asks "what was it?" I tell her, "don't worry about it, it's high". It was 280 or something. I wasn't too mad at her, but I was mad that my blood sugar was high... And I didn't realize how much I let it get to me until later.
My little niece, about 5 years old, wanted to test her blood sugar just for fun. She would put her finger on the end of the poker, but always retract her hand before pressing the button. It was cute at first, but after 15 minutes it was annoying me. I have to do this every day... multiple times a day... and everyone was laughing at my little niece since she was so afraid it was going to hurt.
Thinking about my high blood sugar, remembering the complete disregard for "diabetes etiquette" my sister displayed, and just in general wanting to leave since I was feeling bad I just kinda snapped. I took the meter and said, "alright, well that's enough, you tried but it looks like you're too scared to do it - and there's no reason you have to anyway, so I'm just going to go."
And I left. My wife asked me in the car why I acted so crazy (I guess she thought this would HELP me feel better? Um, no) and left so abruptly. I told her I was mad at myself since my blood sugar was so high. She then continued to say ALL of the wrong things... "I just don't know how to make you feel better" etc. I got madder and madder and madder. But after she started saying the right things... like "this must be really hard for you"... and after she successfully lef tthe 'I' out of things diabetic (since she cannot and will never understand fully) I started to feel better.
Looking back on it. I was obviously too hard on myself. What triggered my anger, sadness, and odd behavior was me feeling down about my high blood sugar. But what did that anger and sadness do for me? Well, let's see. I gave myself 2 units. And 6 hours later I am... 258. I couldn't focus on anything since I was so angry. It obviously didn't help me with my blood sugar.
What should I have done? Well, I shouldn't have been so hard on myself. I should have just fixed the problem and not gone completely Debbie Downer on myself. If I didn't respond so emotionally, I probably could have easily fixed the problem and thought about other things. The fact of the matter is... We're type 1 diabetics. Peaks happen. I ate at a restaurant for dinner, and I RARELY come out of a restaurant within the 80-140 range.
I do think it's OK to respond emotionally sometimes. Say, if you've been in the 200's and 300's for a while and can't get your sugars down. If you aren't already feeling physically terrible, a change in diabetes management philosophy and a change in your emotional response to your diabetes may be necessary. But to get down about a few high readings while your A1C is still great (which it is Alyssa, and you're getting better and better at it) only will make matters WORSE.
Next time you have a high reading and start getting self-defeatist, say to yourself "I'm not perfect and that's OK". Nobody is perfect. Don't compare yourself to the non-diabetics. It's as non-helpful as dwelling on one bad blood sugar reading. Yeah, we have a pretty crumby chronic illness. But the fact that we've actually been fortunate enough to live a life - even a diabetic life - is incredible. I consider myself extremely lucky even to have been given a shot at it all, diabetic or not. How lucky am I that my dad's little sperm was the one out of MILLIONS to find my mom's egg (OK that's a little gross, but when you think about the chances... it makes me feel so damn lucky).
I think I went off on a tangent, but I hope it helped at least a little bit... in some obscure way. :)
[quote user="Alyssa"]
As far as friends and people go, it's felt like there is an extremely slim chance of people getting to know me. I just don't understand how someone could like someone else more than they hate diabetes... I don't think I'd choose it recently. Why would anyone else choose to deal with it when they can have the freedom not to?
I think I'm more afraid of not being myself, or who I thought I was. I'm afraid that maybe I was fooling myself all these years with diabetes, that I'm not as strong as I thought I was? Or made myself out to be? Maybe I thought I could handle it, thought I could do well, care enough, be enough, do enough to make everything OK. But maybe I was just kidding myself, and this is who I am. The 470. The suspended pump. The lost.
[/quote]
Hi Alyssa,
I think everyone goes through this at one point or another. I tried to read your profile to see how long you've been Diabetic but I was "denied," so I'll assume you've had it for awhile. Being a relative diabetic newbie (4 years), I don't know the best answer, but I know there exist plenty of solutions for the way you're feeling.
You've already taken a step towards the first solution which is talking/venting to people who are in the same boat as you. We're all here to listen to and help you with whatever my happen. Another solution might be to see a "diabetes therapist." I know someone who saw one of those when they got stressed out with being Type 1 and stopped taking care of themself.
You also talked about choices. Why choose to take care of yourself when you can so easily choose not to? The answer to that would be pretty simple in that we want to live long, healthy lives. Sure you'd be rid of the daily rigors of monitoring, bolusing, adjusting, etc., but you would also be back in the same boat that you were in when you got diagnosed (physically anyway). From what I've read and talked to people here about, they did not like the feeling of super high BGs and whatever physical/emotional stresses emerged from it.
I don't think you're kidding yourself at all. Your writing style shows maturity and ability to comprehend stuff that other people your age probably can't even begin to understand. It just seems that you've hit a point where you're questioning or realizing that this is something that you'll have to do for the rest of your life. I think if you can get back into a rhythm, and instead of hating Diabetes, find a way to live with it, you'll be able to push through this and become a valuable person to talk to for the numerous other Type 1's out there who feel the same way.
In closing and response to the last part, you are who you are (sorta like Popeye). I think who you are will be defined in how you deal with "the 470, the suspended pump, and the lost," and that when you do that you'll find that the "real" Alyssa is there.
Hope that helps, and remember that there are plenty of people here like Matt (myself included) who are willing to listen and help everyone else here if they go through rough patches.
You'll get through this!
Cheers,
- Pat
Alyssa,
You are a really strong person, and it's great that you can express yourself so well. I give you so much credit, because I would have loved to be like that when I was your age. Whatever you do, don't give up. Maybe the changes you want aren't happening as quickly as you would like, but you'll get there. I know from experience how frustrating and upsetting it can be when things, especially the numbers, don't turn out like you were expecting them to. I've had my fair share and sometimes still do. It's the effort thats most important. Most people won't try very hard. It really is worth it. You just have to keep in mind that there is a big picture and all the efforts you are making now will be to your benefit in the long run. I know sometimes I feel a bit more isolated sometimes, because I'm not like everyone else. But that's okay, because I'm allowed to be my own person. It works out better that way. Besides who really wants to be like everyone else? Anyway, I can care for my diabetes. There are so many things out there that can't be cared for at all. I am looking forward to more advances in research and moves toward a cure. I want fewer people, especially children, to have to suffer from juvenille diabetes.
[quote user="Mad Evans"]
Yep, you scared me off. Big time. :-P [/quote] Aw, great!
Did I? Did I really, Matt? Or did you scare yourself off "big time"?
Whatever, that was weird.
I'm going to go test my bg.
Not only are my Yoda skills off, but I'm having issues reading all these great posts and typing :)
[quote user="Pat"]
[quote user="Alyssa"]
As far as friends and people go, it's felt like there is an extremely slim chance of people getting to know me. I just don't understand how someone could like someone else more than they hate diabetes... I don't think I'd choose it recently. Why would anyone else choose to deal with it when they can have the freedom not to?
I think I'm more afraid of not being myself, or who I thought I was. I'm afraid that maybe I was fooling myself all these years with diabetes, that I'm not as strong as I thought I was? Or made myself out to be? Maybe I thought I could handle it, thought I could do well, care enough, be enough, do enough to make everything OK. But maybe I was just kidding myself, and this is who I am. The 470. The suspended pump. The lost.
[/quote]
Being a relative diabetic newbie (4 years), I don't know the best answer, but I know there exist plenty of solutions for the way you're feeling.
You also talked about choices. Why choose to take care of yourself when you can so easily choose not to?
In closing and response to the last part, you are who you are (sorta like Popeye). I think who you are will be defined in how you deal with "the 470, the suspended pump, and the lost," and that when you do that you'll find that the "real" Alyssa is there.
Hope that helps, and remember that there are plenty of people here like Matt (myself included) who are willing to listen and help everyone else here if they go through rough patches.
You'll get through this!
Cheers,
- Pat
[/quote]As far as how long I've been diabetic, actually about the same as you :) I was diagnosed almost 4 years ago (4 this October).
As far as choosing not to take care of myself, I think I'm not not taking care of myself, I'm just not doing as well in my care as I expect of myself and know I can. Excluding that tennis episode w/o insulin.
And thank you to Pat, Matt (aww, no more rhyming names left), and everyone else who's helped me, even stilledlife who messaged me :) I appreciate everyone being their for me, and although I feel a bit better about it today I've still got quite a ways to go. And I hope I get there soon.
This is Your Life - the Newsboys
This is not the warm-up round
This is not a trial heat
It can't be repeated when your time has gone
This is not an infinite resource
Or the prelude to a starter course
You don't send it back if it gets done wrong
Chorus:
This is your life
Treat yourself right
Treat others right
Live like you know you should
This is life
Fight the good fight
Fight for what's right
Do what you know you should
Every living soul completes
A finite number of heartbeats
This is not the sum of what you're here for
Every breath you take will be exhaled
Every rising sun will fall
The measure of it all is what you live for
Bridge:
You had a dream
But it got lost in a life of regret
The devil knows you get just one shot
You had a dream
Are you still dreaming or did you forget
That heaven's calling for your best shot
I owe an enormous thank you to every one on Juvenation who is helping me through this. You know, yesterday I was feeling so horrible about everything I was going through; I couldn't figure out where the light at the end of it was, or if there would be one; what if that had been me??
But with the incredible wisdom and the words from you friends, I'm getting up. That, and this song.
Diabetes is taxing, I've got it for life. But this is my one shot to do it right, and there really isn't a second chance to my life. I believe that for the past few weeks, I have become so bound up in the negative that I couldn't remember that heaven is still calling for my best shot. And I'm ready to give it.
I'm so confused, and lost. Why am I afraid to go to my parents about this one?
Alyssa,
First, since I've been gone a little while – let me say how much I’ve missed reading your posts!
As for the rest… I read it and all I can think is OMG- thank G-D!!!! There she is!!! Now for the bad news about the teenage years:
Rule #1: Everything seems HUGE
Rule #2: Everything seems like it’s going to be FOREVER
Rule #3: All emotions operate at a multiple of 100 and everything FEELS more intense
Living with the above rules, managing this illness and dealing with all the parental, school and social expectations and variations should be enough to push anyone to the point of confusion now and again. I think it is fantastic that you are so aware and for a long time I wondered if you were 65 and lying about your age with a granddaughter’s picture because you are always so together and wonderfully insightful.
To me… This feels real – it feels great to see you getting in touch with the things you have behind your guard and I bet it is unsettling as all heck to spend too much time peeking behind the curtain.
That said, if an older perspective through cracked and clouded rear-view mirror holds any value – I think you are doing perfectly well, I think you are right where you ought to be and don’t worry so much about being perfect right out of the gate (yes, I know you CAN do it many times so it seems like it should be easy) – judge yourself based on averages and start using the averages of your years and not your days as your guide stick.
This is my advice (and trust me, I usually try to avoid giving advice because I am notoriously BAD at it) so take it with a grain of salt and plenty of second opinions. There have been some wonderful insights posted ahead of mine and I am sure there will be more to follow from others brighter than I… As for your parents - it is hard as a teen. We want their approval, we want their respect, we're afraid showing we're struggling will cost us in some way - we're worried about cracking their confidence - we want to separate our lives from theirs by instinct... it's a pretty complicated run...
Keep doing your thing – there is nobody out there doing it quite like you!!!
Cheers!
A-D
(since i've been gone a while - do i need to warn people how much i write at a sitting?!?!?!?_)
Too funny, A-D, because I've been hoping you'd come back on; you're advice, regardless of what you say, is always helpful and insightful. I appreciate the lengthy response :) as it helps me get that much closer to patching this up.
I don't think I like what's behind the curtain; I worry all the time, lately, that what ever is behind the "curtain," is who or what I am? That all these hard days and frustrations with myself, the stupid choices, carelessness, is all Alyssa is? I don't want that, that's not enough to me or for me. It's not who I want to be at all, and it scares me that this is all I've got. And I don't like feeling like a teen either. Why have I been OK up until these past few weeks??
I don't understand why I can't be proactive about this. I ask my parents to talk, I back out. I lie to them, tell them I feel better about it and changed my mind. If anything, I feel worse. I regret every time I ask them to talk. I hate that my smile drops the second they turn their back, that I have zero self-confidence. I just wish I could buck up and knock it off; like my head & heart knows what to do, but my emotions won't listen.
PS
Two things:
I promise I'm not an old lady. I really am 15 :)
And secondly, where have you been? We've missed your wisdom!! :)
And, so I might have posted to bump it up in the forums.... with the hopes I'd get your two cents :)
you now what i was like this to when i found out i just wanted to died. but i fought and fought with my self did not work but then i change doc anf feel beter now with a 8.8 just have to wake up ok just hang in there.
Alyssa,
Feeling okay when you’re not guarded is good. Feeling okay because you’re keeping yourself from feeling things… Well – as a long time expert… it all leaks out eventually… It’s taken me a lot of years to learn to recognize and deal with my emotions – the fact that you are starting now is great (even though I am quite certain it does not feel that way). Since it is new ground, be gentle with yourself – it’s okay if it takes some time to get your head wrapped around where you are.
Your description of yourself of late is one sided and you are not that one dimensional. As one who has seen too many of your posts not to know better – you are human. When you lie to protect yourself, you will, ironically, end up hurting your self-image/self value – at least I have found it to be true for me.
Having a head and heart that are so together is a good thing. I will suggest one final thing here – be as patient and supportive with yourself in this area as you would be for a dear and close friend who needed your support and counsel. I am sure that you would be great if someone came to you standing in those same shoes ;)
It’s okay not to feel like you are on track sometimes. Keep your eyes open, keep working on your averages – it may not feel like it but you have already got a good jump on a lot of us… I can promise you I was a much bigger wreck at 15 than you are, LOL
Cheers!
A-D
P.S.
Great t’ finally start seein’ the kid in you, kiddo!
Things at home & work have been a bit busy – I love ya’ll – I gotta’ have the time in with the family 1st ;)
Look at you plotting, LOL – see?!?!!? You’ve got plenty of wisdom - and I'm glad ya' caught me!
I don't want to be a "kid" if it means feeling like this -- I want to be that stronger me, the braver me, the one who took on everything in stride and sprang back up when she got knocked down, whether that was a kid or not, either.
I know I'm just hurting myself. I'm concious of it. And I'm probably hurting the relationship between my parents and I as well. I've always felt that being diagnosed with diabetes could have either made or broke our bond, but it got stronger. And now it feels like maybe that's slipping, too...??
I just want to feel OK again, and I'm at a loss of what to do.
Alyssa,
The best thing that you are doing here is talking about how you feel. Which it seems that you are not afraid to on here. I know as a teenager that things are hard. Have you ever heard Brad Paisley's (spelling of his last name, I suck at spelling) song "Letter's to me"? It kind of makes me wish when I was a teenager that I could do what he was doing in that song. Write a letter to myself when I was 15, but only from the future say when I was 25. Also, remember you still are a "kid" you are only 15 as your mind is going through alot of changes and having diabetes just makes it harder.
If you are worried about hurting your relationship with your parents you need to talk to them. I know you don't want to but they will not be mad at you or anything. They will be happy that you are talking to them. They will be angry with you if you don't talk to them.
You can be the braver stronger you, by talking with them and others, which you are doing, as a way to get help.
Josh
P.s. Sorry if this seems a little off sometimes I have a hard time of writing what I am thinking. :)