Acceptance of diabetes - your experiences

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Acceptance of diabetes - your experiences

Postby Jen (nli) » Thu Apr 02, 2009 6:31 pm

Acceptance of D seems to me to be a magical, mystical land. I've heard a little bit about it (not a lot). It seems very inviting... but there are no clear maps as to how to get there - or stay there.

This post has been inspired by something Kate wrote at the end of Eds' post...

Kate said:
I reckon it's only in the last few years I've let go of the hate (I could add a lot more objects!) - I know that sounds really hippy but I just wanted to say I had the same responses to D for a long time, and it is so much easier when you can let go - though no major tips on how to do that except getting older and having the opportunity to vent here and elsewhere.


I thought I'd start a new post on this topic as I don't think a real lot has been written on this.

Have you accepted D in your life? What stages (or phases) did you go through? How do you know you've accepted D? (What's different). Any tips? Or - What do you think is preventing you from accepting D?

I've had D nearly 20 years. Have I grown to accept it? - well - I think I have on the whole - but there are days and weeks where I'm very much sick of it all and would gladly give it all away! I wonder if this is still acceptance? (I think it probably is... but we are all human! Acceptance hasn't made me into a saint).

Where are you with this magical, mystery destination of "acceptance" (or "serenity" as Anne once had it described to her! (Check Eds' post)
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Postby tristo » Thu Apr 02, 2009 7:33 pm

I have been diagnosed now for around eight months. I sort of self diagnosed through mighty Google and a friend diagnosed me himself, so it wasn't too shocking. I took it well, and have sort of continued to do so.

Last month was the first time I'd said "I hate having diabetes" - i was just frustrated when i lost my tester, angry my housemates can eat a whole pizza and not worry about their health when they treat themselves badly and get away with it, sorry that my girlfriend and parents were worrying about me, and also cranky that no one else was worrying about me.

Talk about confliction!

In short though, I've accepted it. The support from the (public) health system has been nothing short of amazing. Reality Check makes things easier. I look forward to the future of the technology. I've even got a nickname for it which is just 'Betes' (pronounced beat-ees) and that keeps me going. (I also like to get a free lolly here and there, or dodge my way out of housework on the odd occasion).

Sometimes i'm even inspired by it.
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Postby Erin » Fri Apr 03, 2009 1:40 pm

I'm one of the "lucky" ones diagnosed early. I was only 8 or so when diagnosed and I don't really remember life before D.

Plus, I wasn't a terribly healthy child to begin with, so D seemed kind of easy to deal with comparatively. My only question when diagnosed was "does it come with an operation?" Once I knew it was only shots it didn't seem like a big deal.

Sure it's annoying, it particularly drove me crazy during my teenage years. But really that's all I ever thought it was, an inconvenience. Another layer of crap to deal with every day.

On a bad day, I just test my blood sugar and do whatever my pump tells me to do. No thought energy spent at all. I don't even look at what my blood sugar is, I just let the pump worry about fixing it.

On a good day, it is a really interesting hobby. Half science experiment (how will I calculate the GI of bananas with olives and cheddar cheese?) Half accounting puzzle (now, what was my average blood glucose level during the month of February, if I completely ignore the weekend of Valentines day when I went off the wagon?) Half social experiment (How will that child react when I start poking myself with needles... should I be more worried about the mother?)

And I just came up with three halves... but you get the point. I think the trick is not pushing yourself too hard on the bad days, and enjoying the good ones.
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Postby belinda222 » Fri Apr 03, 2009 4:47 pm

I used to accept my diabetes and rarely gave it a second thought, I accepted it from the begining even though I was only 13. Now I am 31 and I hate it. The more complications I get the more I hate it. I think with me it has all come from having children, before them I only had myself to think about but now if I get sick it affects them. Its weird, I have accepted having D as there is not much I can do to get rid of it (unless there is a cure that I have not been told about ha ha) but I still have times where I cry and tell my husband how much I hate it, I do not dwell on it though, it only gets me down once in a while and the rest of the time I just try to be a 'good' diabetic.
Belinda :)
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Postby Tony » Fri Apr 03, 2009 5:43 pm

I just find that even after 37 years, occasionally it still gets to me.

It's usually because I'm stressed about other things in life and D just adds to it. One more frustration. My solution is to have a total meltdown. Yell, scream and be beligerant :). Once I get it all off my chest I go back to being calm about it.

It only happens every few years but I accept that I need to do it.

I guess that's why we all occasionally have a RANT on the forum. Dump it all. You get responses of support, sympathy and lot's of 'knowing' nods. We all understand the Rant.
If you want something done, do it yourself. Make the effort and start the Change!
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Postby Coll » Fri Apr 03, 2009 8:52 pm

I’ve had D for ten years (I’m 43yo) but I haven’t accepted it yet. I live with it because I have no choice. I eat pretty much what I want, when I want and then I test a lot and correct a lot (although there are some foods/bevs I keep away from).

3 years ago I had a much bigger problem in my life – infertility. That took up most of my personal angst and energy….but now that’s been resolved (my daughter is 2.5yrs old) I’ve found this last year to be the most frustrating and annoying, and almost depressing as far as D is concerned – I think its the swinging sugar levels and the lack of ease with getting BSL’s that give you the magic Hba1C you want - I think…..

certainly I’ve found RC to be of great comfort as I’ve felt even my closest friends and family aren’t giving me the emotional support I need and its much easier to hop on the forum and share the posts…

Most days I try not to put too much ‘negative’ emotion into my D although I often punch my fist in the air with a ‘yes!!!!’ when I get a good reading in fact I try to just get on with life and vest only enough energy into D that is required to get me through the day/night.

..
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Postby ali m » Fri Apr 03, 2009 9:39 pm

Like Erin, I wasn't particularly healthy during early childhood. I had fairly bad asthma which was never very well treated. I was in and out of hospital and I hated feeling so horrible, unable to breathe easily.
When I was diagnosed with D I was a bit puzzled, because I felt completely well. Couldn't work out why I was in hospital.... D didn't make me feel awful (at least as a kid), so I was fine with the needles and so on.
I got a bit irritated with D after the DCCT came out and glycaemic control was rammed down my throat while I was trying to deal with puberty. Never easy, and all of a sudden I was being warned about what would happen if I didn't "behave" myself and be a good little diabetic (I hate that word!).
Strangely enough I negotiated adolescence safely, and at 25, after 20 odd years of D without my feet falling off, my kidneys failing and going blind, I sort of relaxed a bit. I'm one of the lucky ones, and now, at 30+ years of D, it's nothing more than mildly inconvenient. I continue to hope that complications don't creep up on me, but they probably won't now. I don't think I've accepted D (or not accepted it...), but neither have I fully accepted I'll always be 5'0". It's kind of on that level of my consciousness. Not very high.
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Postby luluhaggis » Tue Apr 14, 2009 5:07 pm

great posts. I m not sure if I hve accepted D I just get on with it. I have had D for 4 yrs now.I took diagnosis well and 'seemed to cope very well'. I have my meltdowns, however recently i am becoming more and more angry. Angry at other people - having an easy ride. I dont mean to upset people but Im especially angry with fat people. This is the first time I have ever admitted this and I feel gulity and ashamed and more angry with myself for becoming very judgmental of overweight people and I hear myself saying in my mind word like - self indulgent victims who dont care and stuff anything into their mouths - and I cant. I have to stay healthy and watch everything I eat - weigh food out, judge if this yummy food is worth the hassle of poor bsl, constant self discipline its exhausting - and I think that overweight people lack self discipline for whatever reason and in a sick way im angry and jealous of that. I get angry becuse I think they are walking heart attck,stroke and type 2 walking zombies and I wouldnt wish anyof this on anybody but yet they continue to do it to themselves. I want to grab hold of them and scream wake up. I see it as being unfair as I ahve always been fit and healthy and I have to put up with this crap - I cant even do exercise without thinking about the negative affects on bsl - and the cycle goes on and on. Im so sorry if I have upset anyone I feel ashamed for feeling like this.
I really want to be able to let go but I dont know how. I over think everything - I really wish I could find serenity. So I guess I ahvent accepted being D.
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Postby Caraline » Tue Apr 14, 2009 5:24 pm

I feel like one of the lucky ones because I got it later (in my mid 50s). I think at my age and above, you start to consider the things that can go wrong and though you don't like it, and the way it comes can be a bit of a surprise, but overall instead of thinking "why me?" you are more inclined to think "why not me?" Acceptance came pretty fast for me, but then I've been lucky to because I have great control & so far other than wearing a pump around, diabetes has had zero impact upon my life. May it long continue.... touch wood three time.
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Postby JoJo » Tue Apr 14, 2009 6:03 pm

I was diagnosed when I was 9 years old and, like Erin, I don't remember much before, like eating and NOT testing, carb couting or NOT nedding insulin. I was pretty sick when diagnosed but it didn't really hit me, so I kinda got used to everything slowly.
When I was about 17 I found out I also have an underactive Thyroid gland. At the time I had the flu, felt crap, because of thyroid disease my bsl had been high for a while and I was really hatting the lot. I got over that I think cause I cant do anything about them so it just is. Both thyroid disease and D are autoimmune diseases so I have more chances of getting others.
That I think really sucks.
Duh, I have sugar diabetes.
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Postby Ezza » Tue Apr 14, 2009 6:41 pm

I was diagnosed 3 years ago on Good Friday and I haven't accepted it. Right now I don't feel like I ever will accept it but hopefully that won't be the case.

Even thought I know in my brain that everyone feels or has felt the same way about D as I do, the illogical part of me feels like no one could possibly hate D as much as I hate it.
I'll stop procrastinating tomorrow
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Postby sandie » Tue Apr 14, 2009 7:58 pm

Like Caraline I was diagnosed in my late 50's (four years ago), but unlike her my control is lousey (I am not on a pump, and dont envisage this happening due to costs etc).
The strain it has put on my 40 year marriage is considerable. Maybe it is the combination of the different tablets I take, I don't know (I also have an under active thyroid), but my patience level is very low, and I get very upset and horrible at the slightest thing, (mainly to do with my husband). It seems to have bought out in me all of the horrible parts of my personality, that were hidden (or not there 4 years ago).

Do I accept having it, no way, but unless I can I'll probably end up a lonely and angry old woman.

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Postby Kate » Tue Apr 14, 2009 8:30 pm

Sandie - Sorry to hear you're having a crappy time with your D. I know exactly the short fused thing you are talking about. This is worse for me when I am high, or bouncing all over the place, and yes my husband cops it too (and is really excited at the prospect of doing so for 40 years!).

If you think a pump will help your control, I just wanted to clarify the costs are not as much as some people think- and a lot less than they were a few years ago - there is, in some quarters, a hangover from that time of people thinking it is very expensive. Cat I think here worked out it is a few dollars extra a week to run a pump than syringes/pens, but that is possibly even offset by using less insulin but it's pretty comparable to run on an ongoing basis. And to get one in the first place you need just the basic hospital cover of private health insurance, and most have a 12 month waiting period - my basic hospital cover just went up and is now just over $60/month. You wouldn't be the first to find room in the budget for 12 months of the waiting period.

All the best with everything, Kate
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Postby Caraline » Tue Apr 14, 2009 8:48 pm

Sandie, like Kate said, being on the pump isn't as expesive as some people think it will be. Also, if you are in a health fund (you just need hospital cover), then the fund usually covers the cost of the pump. I only did 5 months on MDI before moving to the pump, but I never felt very flash doing injections. I had a lot of hypos. I get them very rarely on the pump and they are quite minor.

Are you done with menopause? I was lucky enough to have had a very early menopause, so it was done & dusted by the time I developed diabetes. I am very thankful for that, because I think the two together would be very difficult.

I still have my occasional grotty moment. My husband certainly knows not to stand between me & the refrigerator if I start to go low.
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Postby Jen (nli) » Tue Apr 14, 2009 10:34 pm

Thanks for the replies guys - very interesting.

My acceptance of D goes up and down depending on my general satisfaction with life (I think...). I'm going through a very negative phase at the moment in my life where I'm getting very jealous of certain people who have (what I consider to be) very simple, hassle free lives. I'm driving my husband nuts by going on and on about how bloody easy these people have it where as (obviously) my life is just complete $#!t. If I'm not careful I'll drive my husband away and then I really will have something to complain about!

Lulu, my hatred at the moment is on people who can lose weight easily by exercising! Its a twist on your thing. I've put on weight since having my daughter 3 years ago - and I'm having a lot of difficulties shedding the weight. When I exercise, I find some where along the line I need to eat - which means I end up consuming the calories I should have lost. Very frustrating. I can understand your feelings but do keep in mind that some people carrying weight may be suffering as well. Its not all about self control. I haven't taken offence though... and I think its good you can vent those feelings.

I've had other periods in my life where D has barely made an impact... and yet, its just as difficult to control and has required just as much work. For me, if I'm not happy then D just adds to my woes!

I guess its a marathon, not a sprint. Like any long term thing, there will be good times and bad. Hope those people going through the tougher times get through them quickly.
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Postby Cee » Tue Apr 14, 2009 10:42 pm

I hadn't thought about it. But I have now and I think I have accepted it. I think I accepted it when I took control of it (well as much as you can). While trying to get pregnant and then while pregnant I had to face it head on, no excuses, no denial, no BS.
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Postby lisyloo » Wed Apr 15, 2009 2:06 pm

I agree with Jen re the anger at not being able to lose weight like anyone else (and them not realising how easily they could lose weight if they did even half the exercise i do! bah!)

I have been diabetic for 21 years now (since I was 8) and i think it's only in the past few years that I've accepted it and learnt to adapt. prior to that (as spouted in previous posts) i just lived as i wanted and D be damned. then when i found i had my first complication (microanuerism in right eye) i think that kind of made it all real; not looking after myself WILL have an impact and it WILL happen to me.

so now i find it a lot more consuming; i tell a lot more people about it, gently (or possibly forcefully) educate about types 1 and 2 and get on my high horse about eating right and exercising. I find that really hard; people who don't have any medical conditions not looking after themselves makes me want to slap them and say 'don't you get it? you only get one shot at life so look after yourself now!!!'

i seem to make it a bigger part of my life and that's made it easier (for me) to manage it better. i'll cut out of a meeting to go test my bsl and eat some lollies, i'll test my bsl whilst walking down the street, jab my insulin in in a restaurant non-too-discretely. all of my friends are now very aware of it (friends i used to get blind drunk with in my "bad" days) before i was embarassed and wanted to ignore it (and had a Hba1c of 12) whereas now i've kind of embraced it and am kicking butt, or as much as i can anyway.

now that i think of it, accepting it coincided with getting married, so maybe it was thinking of wanting to spend teh rest of my life with my husband and knowing if i wasn't careful i'd cut my life short, or at least make it more miserable!

i still have days here and there where i have a minor tantrum that i've worked so hard and not lost weight, or random high blood sugars ruin an otherwise perfect day, or getting low in the middle of something good, or worrying about how i'll go when we decide to conceive... but i try to counterbalance that by thinking of friends who have worse medical conditions and life expectancies and that makes me just think suck it up lisa, you're doing ok.

hope some of that makes sense!
Lis
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Postby Ruby » Thu Apr 16, 2009 3:19 pm

Having had D for nearly 22 years I think I accept a lot of it as "routine" as I would brushing my teeth.. but when you get the unexplained highs and lows and you have to work at it I get the angry at the world thing going on ...

I also have Graves disease, vitiligo and infertility and of those D seems to effect me the least......
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Postby Kate » Thu Apr 16, 2009 10:38 pm

Lis - Have you followed some of the recent discussions here about 'feeding your insulin' ? Interesting ...

Ruby - You sound like a trooper! Crappy about that list of other stuffbut good on you for just getting on with it.
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Postby byronss » Mon Apr 20, 2009 5:51 am

After 30 years, during some of which I didn't give a hoot and didn't look after myself, I still get annoyed with it some days. Mostly this comes from loving food, cooking, and entertaining. Having to think at every turn what's going to give me problems if I injest it and what won't, and if I feed guests, what can I make that we all can happily eat (eg I don't do well with pasta or pizza).

The other annoyance comes from having put on 12 kgs since I started insulin (about 5 or 6 years ago), having had a wrong dx of T2 instead of LADA, and not being able to budge a single ounce off me, despite eating right (lower-carb).

The asinine idea that you can live a 'normal' life also annoys the hell out of me. Sorry, but I sure don't live like my friends do as far as meals, exercise, shots and testing goes, and definitely not when going out to restaurants. Some of the spontaneity that others have is definitely missing from my life.

I'm not much of an ordered person. I don't eat the same every day or at the same time. Even after all this time, I still have to set Levemir alarms (computer, phone, laptop) because I so often lose track of time when I'm involved in something.

I'm so much happier forgetting I have D, but like everyone else, I can only go a few hours like that.

For me, I think that accepting that there are times when I'm OK with it and times I'm not, it's the best I can do with it until now.
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Postby David » Mon Apr 20, 2009 2:27 pm

Hated D when I was first diagnosed as well. Like some others did not understand at such a young age what was going on or how I was going to control it. Have had many problems with eyes but thank heavens I can see clearly enough to drive. I do think eventually this all goes, the hate. I have not ever gotten used to it but feel more at ease with it. I have diabetes, but do not let it control me. I came to the conclusion many years ago that I would like to be on this earth long enough to be a grandfather to bot my girls children. This may change once they hit puberty though :)!
Maniacal Diabetical
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Postby Thomas » Tue Apr 28, 2009 8:09 pm

I've only had it for 3 years now (but im only 17 so got a while to go yet :P), when i first got it i thought nothing of it (mind you, i knew nuffin at all about it bak then) and i figured it was just another obsticle for me to over come, and my mindset stayed like that for a about the first year, then i started to feel very different because i didnt know anybody else who was D, then i went to a diabetes camp and it was all good again
it annoys me a fair bit now days, everything i do i need some stupid paperwork filled out by a dr to say im able to do it, i even need a special letter stating im diabetic just to do my HSC exams.... but i got a real good diabetic buddy who keeps me going
I'm Still Running On All 8, My Oil Pump Just Isn't Working
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Postby Tracey » Wed Apr 29, 2009 4:11 pm

I went into denial about diabetes about 8yrs after my diagnosis. I{ was fed up and wanted to get off the diabetes train. We all know that is not possible but acceptance and as i've found re-acceptance is. I used to feel as though i had the address, just no refidex. I was getting fed all this information about diabetes but being so young i had no idea what to do with it so i just went along for the ride.
Having been thorough depression and eationg disorders and just recently a really bad scooter accident where i was critically injured, and then to have the vessells in the back of my eye sburst making me vision impared at the moment, there are a lotof reason i can think of to hate my body for what it
's put me through. But having actually survived the accident I must have been hit hard on the head because all the anger towards my body and diabetes has lifted. I recently got the best hba1c i have had in my 13.5 yrs of diabetes - 6.0 I now I look t my body in amazement. Even with all the scarring I now have, the reduced movements i have in mmy leg and the new complication in mty eyes, i can now see and respect how complex the human body is, its a machine that fights to survive in every way, when one thing is not right it uses other parts to rectify the problem. Withiout diabets being apart of my life i think the respect i now have for my body woukd be non existent or very little. Diabetes has taught me things i would never have learnt with out it. I have a newfound drive to keep my body fighting fit so that it can be at its peak 95% of the time atleast..
yeh diabetes gets in the way some times but its completes me as the person i am today.
Dx 1995
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Postby artemis » Wed Apr 29, 2009 5:28 pm

I'm being very honest here - my acceptance of D depends on the day, the time, my mood, what I'm doing etc etc. Mostly it's in the background waiting to come forward at an inopportune time (e.g. hypo in the middle of the supermarket), but I guess mostly I accept it because really there's no choice. It just is. Some times are better than others, but I think I've mostly learned to lived with it.
Jane
Infundo ergo sum.
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Postby shadowlandr » Thu Apr 30, 2009 9:37 am

i've pretty much accepted it overall. i mean, i've had so much time with it, i kinda have to! i got it a couple days before i turned 11, and now i'm 28, so seventeen yeara of dealing with this crap gives one a lot of time to think about having it. i mean, the shots can hurt ya, but they're not too bad overall. it was definitely much more of a pain in the butt when i used to have to do shots with syringes. doing it with pens is much easier, of course. now all i have to do is get the insurance to approve a pump, and life will be wonderful!!! it was wonderful back when i had one before-- i mean, it gave me the opportunity to go to europe, what could be better than that?! i plan, of course, to visit oz whenever i get the chance-- just have to work toward the pump and work up the money!
becky =)
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