How Your Views Of Diabetes Have Changed Over Time Since Diagnosis

[Jenny15]

When I was diagnosed with T2 in 2009, I was super motivated to get it under control. Because half of my extended family have it, I didn't see it as a "disease" or something to feel really bad about, but I know some people do. The initial shock can be quite a big thing to get your head around.

After getting my blood sugars under control, my motivation gradually decreased and after several years I became complacent, because my mind had tricked me into thinking T2 wasn't such a big deal after all.

Inevitably my T2 became out of control (in a major way) and then I took proper notice of it and started the work to turn it around. There are no guarantees in life but, I think after what I've been through second time around I'm unlikely to forget it and let things slide in the future.

Nowadays I view diabetes as something I will never be able to completely forget about, and as a disorder that I had a high chance of developing no matter what I did in life. I no longer feel guilt and shame that it happened. What is done is done.

I think I've got a pretty positive and sensible approach to diabetes (finally, lol). Keen to hear about the experiences of other people in this regard.

 

[Prem51]

I was terrified when I was first diagnosed, which prompted me into a drastic eating regime for the first 4 months, losing over 30 lbs and reducing my HbA1c from 49 to 44 by my 3 month retest. I continued to be careful about what I was eating until my next annual test, when my HbA1c was in the non-diabetic range at 39.
I did become more complacent after that, eating more sugary and carby stuff which led to me getting an HbA1c result of 42 at my second annual test. I'm not too worried by that as it is still lower than the readings I got before I was diagnosed.
I am trying to be more careful now, and I hope/expect to still be below 48 at my next test in September/October.
I think if I did go into the diabetic range it would shock me into taking drastic action again. Apart from the possible diabetic complications I have a real phobia about injections and I am scared of possibly having to progress to insulin injections.

 

[kitedoc]

Some thoughts: At age 13, in 1966, my views were that I was being punished in some way. Who says I have to stick needles in myself but not the next guy? The other thing was disappointment. Spaceflight, astronauts and going to the Moon were big news items around that time. No astronautics for me now !!
Once I got home from hospital my mother and father set about helping me to deal with the practical issues. That attention and input gave me back a sense of control over my world and an interest in tackling problems and working out solutions. That introduction has stayed with me throughout my life.
No glucometers then, just urine testing paper tape and a chemistry set, a test tube into which urine, water and a caustic tablet were placed, lots of froth and a colour to match to a chart for glucose levels. ( like a more complicated type of testing kit than for swimming pools). I never wish to do urine tests again although I realise the benefit of testing urine for ketones on occasion.
Glass syringes and reusable metal needles were boiled up in distilled water on the stove in a improvised aluminium drug container with (unused and very clean) cage made of fly wire mesh. For holiday trips syringes and needle were transferred to a butter dish and filled with metho. When disposable syringes and needles came along I was relieved.
By trial and error I applied problem solving and my parents' advice to canoeing, sailing, hiking and developed a routine of regular exercise, walking and swimming. I now walk but swim much less often but exercise is a cornerstone of managing diabetes that I demand to be able to do. My practical nature also strives to maintain healthy hobbies and activities which now include social aspects. After a good laugh with friends my BSLS are often as healthily maintained as after light exercise. (Who say laughter is not exercise and more!!)
I was excited to leave behind urine testing when gluco-meters were introduced and even met the maker of some of the first gluco-meters for home use in the world. But regular, multiple daily finger pricks for, now 37 years, is getting a bit much. I cannot afford CGM on a regular basis but would prefer that Australia and other countries continue to subsidise CGM for youngsters and would add pregnant women with diabetes, and anyone with TID diagnosed from diagnosis for at least the first 10 years.
My impressions of hospital diabetes clinics ,at first, was horror mingled with fascination. ( hey, give me a break, I was 15). People with amputated limbs, or blind and very verbally punitive nurses and doctors. My future looked very bleak. Of course there were exceptions amongst the staff who were supportive and who remain heroes to me.
Attitudes to diabetes and diabetics have changed over time: I was teased mercilessly in my first few months back at school and then treated as an oddity who had to drink glucose before sport and was reprimanded by reachers for eating in class. I was banned from going on cadet camp but could play in the band (meanwhile I had mastered weekend and longer hiking and canoeing trips).
Nowadays, teachers and students seem to be more aware and understanding of diabetes and what it means. My doctor now greets new TIDs with a question about whether they have thought about planning for future needs such as normal age retirement. 51 years later I have shrugged off the gloom and, with only minor diabetes complication such as carpal tunnel and trigger fingers problems, replacement of cataracts, I have shown those doubters of years ago !!
The stubbornness and obsessiveness that good diabetes management has required of me in the past is not easily shaken. It held me back for years from considering the use of an insulin pump. Once my multi-injection MDI regime was not cutting the mustard I had to admit defeat. And then formally scold myself (laugh if you like, wait til something happens to you !!) for being such a silly pratt! (Oz equivalents are drongo, idiot, dumbo and a few rude ones)!
I still have my moments and need to contend with imposition of other health conditions unrelated to my diabetes but I feel more relaxed about diabetes, no longer a foe to do battle with but a friend to fence with.

 

[ickihun]

Before diagnosis..... I'd only heard of the word diabetes. I assumed all diabetics were type1. My school/college friend had type1 for 11yrs by then. She knew what she was doing. A very forthright and loving person. I used to go college alcohol bingeing. She seemed like she knew what she was doing with her insulin. Very much so, in fact. So I didn't give it a worry. She showed me how to inject if she became ill.... Sneakily I now think.
She may have been low and I could have killed her.
Mind u deep down I would have just called 999. I listened to the percentages she needed of slow acting and fast acting insulin in her syringe for me to inject and her insulin was in my family home's fridge. She loved my cosy bed on sleepovers, as I did hers.
We had a great teenage time. Meeting boys and getting up to mischief.
Never once did she feel I treated her with kid gloves. I know she appreciated that.
She is mostly blind now but I was only fully in her life for 3yrs til I got engaged and then moved away, for promotion. (infertility sent me adventuring more).
A few weeks after receiving my diagnosis I came to the conclusion that if my teenage friend could enjoy her life to the full, then so can I.
Diabetes hasn't stopped my adventuring one bit.
It never will.

 

[zand]

At diagnosis I thought all I had to do was to eat a 600 cal diet for 8 weeks, eat sensibly afterwards and then I would be cured. It didn't turn out to be quite that simple.

 

[ickihun]

At diagnosis I thought all I had to do was to eat a 600 cal diet for 8 weeks, eat sensibly afterwards and then I would be cured. It didn't turn out to be quite that simple.

Oh no.
Bless you zand. That's what I fear for newees coming here.
I wonder if those with only diabetes as their concern might be ok.
I think those with diabetes only thou are the minority. However, I could be wrong.

I'm sure you will find YOUR future plan to better health just as rewarding.
We all know our own bodies best.
Observation can be the lock and the key.
Diabetes is a daft disease and it manifests itself to fit the sufferers dynamics. It gets into the nooks and crannies. However because of that we look after ALL aspects of our health. Unlike some who are single minded.
I never would have nurtured my body so well with food if I didn't have diabetes. I'd just eat anything. My sisters and mum does. Hubby too.

Looking after our body's needs is a nuisance but I know is worth it in the end.
I'm living proof.
Nuture your body, it will look after you. Being diabetic makes us do it, or else.

 

[Scott-C]

From a T1 perspective, I've been through various stages, and can see them happening time and time again with newly dx'd posters here.

First, there's the, "ok, read books, learn all about this, get my ratios sorted and it'll all be fine" stage. The fact that it's for life probably hasn't truly sunk home at that stage.

Then, there's a realisation that you can spend as much time as you want doing sums about carbs/bolus and it'll still throw a wobbly, so frustration/resentment kicks in.

Latterly, I've stopped thinking about it as an "enemy". A part of my body has broken, so I need to help it. That way, I don't feel like I'm in a constant war against an unrelenting enemy. I'm just co-operating with a thing which needs a hand from time to time.

 

[LooperCat]

Pretty much what @Scott-C said. I think I’ve got through the classic stages of grief since my diagnosis twenty years ago. A very long period of denial, interspersed with anger (drank myself stupid for months, I was 24 at diagnosis, don’t panic, wasn’t a toddler on scotch or anything); bargaining (I was furious with the God I’d been brought up to believe in, and there were many one-way conversations with me trying to come up with an acceptable deal to make it all go away. No answer. Told him to get stuffed.); depression, and only recently acceptance.

I’ve stopped fighting it now, and am trying to work with my body to make it work properly rather than resent it all the time. And that means feeding it properly, testing and injecting regularly. Still a PITA, but I feel better physically and mentally for doing it. Recent tech helps - Libre, apps, bolus calculators all make T1 life much easier.

 

[Mbaker]

Yes, I thought I would be deceased within a year, as my HbA1c was literally off of the Doctors chart. Working with my wife and finding resources such as this site and the many "reversal" Doctors such as Dr Fung, Dr Halberg, Dr Berg etc gave me hope that Type 2 could be lived with. As I have transitioned from exercise and low gi, to low carb low fat and now LCHF / Keto / Fasting my view is that Type 2 is environmental essentially. When I was on honey moon in an island within the Maldives the food available was fresh and mainly seafood (which I ate for breakfast and dinner) - I know if I were stranded there, It would have been really hard to get near a Type 2 diagnosis, just due to the default foods available, compared to the defaults in the West.

Reading other accounts, diabetes is very hard for some in maintenance mode.

 

[Jenny15]

Wow, great responses! It's fascinating and inspiring to read others' experiences... I don't feel so weird now that it took me many years to fully accept having diabetes and get on with what I need to do. So, thank you.

 

[Jenny15]

Yes, I thought I would be deceased within a year, as my HbA1c was literally off of the Doctors chart. Working with my wife and finding resources such as this site and the many "reversal" Doctors such as Dr Fung, Dr Halberg, Dr Berg etc gave me hope that Type 2 could be lived with. As I have transitioned from exercise and low gi, to low carb low fat and now LCHF / Keto / Fasting my view is that Type 2 is environmental essentially. When I was on honey moon in an island within the Maldives the food available was fresh and mainly seafood (which I ate for breakfast and dinner) - I know if I were stranded there, It would have been really hard to get near a Type 2 diagnosis, just due to the default foods available, compared to the defaults in the West.

Reading other accounts, diabetes is very hard for some in maintenance mode.

I would definitely like to be stranded in the Maldives! I think for most T2s there's a bit of genetics and a bit of environment. Perhaps in previous generations the genetic predisposition was not realised, at least until late in life, because the environment was less diabetogenic. Once modern eating transformed into its sorry current state, that all changed.

I thought I was young to get it at 40 but have seen many aged 30 and even 20 getting T2. That's a long time to live with T2, which makes preventing complications even more important.

 

[ickihun]

Or just a bad upbringing.

Ive asked for my overweight 11yr old to be put on metformin.
One GP said no. Other one wants more info.
Let's see.

 

[Jenny15]

Or just a bad upbringing.

Ive asked for my overweight 11yr old to be put on metformin.
One GP said no. Other one wants more info.
Let's see.

Fingers crossed for your wee guy! Every bit of help you can get is a good thing.

 

[ickihun]

Fingers crossed for your wee guy! Every bit of help you can get is a good thing.

He is not diabetic nor near so GP refused metformin. We has to muster his own strength to stop the heavy eating. I've just bought smaller plates and cooking trays so hoping it will make a difference.