Just passed 15yrs diagnosed, still in Denial

[richyb]

you are lucky to get a pump and should appreciate it. I have been type 1 for over 50yrs my injection sites went bad, Got 2 badly frozen shoulders, and had 3+5 laser treatments. Also recently sugars went out of control. I asked for a pump and because I have a hba of 50 consultant says cant have one...Its not fair.
All I got was a change of insulin.The NHS is terrible and biased

 

[PD Oz]

I hope you get control over this. About the only thing I can offer is that you should set yourself small goals to achieve each month. Write them down and be determined to keep improving on them. As you start to feel better and better over time achieving and improving on your goals you will start to see a clearer way. Go forward and achieve, you will love the journey when you start to realise where you are travelling.

 

[Indy51]

It seem to me that one of the design flaws of humans is that denial unfortunately usually lasts until after the damage has been done. There's very little motivation to change until you have a very good reason to do so. Unfortunately appeals to logic often fail

 

[RAPS_od]

man, you've just recited my life story.
I was really cavalier about my diabetes for a long time. I made up stuff about how I was doing without really taking in what I was saying or doing.
When I got tired of feeling bad and wanted to lose weight, I finally broke down and started testing and trying. It's too late for me; with retinopathy, kidney damage, neuropathy, and Charcot foot (among others) I have to live with the consequences of my denial.
I hope you don't have to come to acceptance the same way I did.
I suggest finding someone to talk to -a professional - who will help you come to your own resolution. No one can do it for you; it's your disease, your answers and your terms.
Find what's normal for you, what makes you feel good, and what you're willing to accept. You know consequences follow whatever path you choose.

 

[BeccyB]

I agree with everyone else really - it's great you've started facing this and found this forum for support.

I would second the advice to set yourself smaller targets - even those of us with really good control (not me!) didn't get there overnight. So far I've managed to get good control during the week at work, where I have a proper routine, but when I'm at home I still often forget to inject before I eat and am chasing the spike all evening - It's still better than being out of control 24/7 though and the daytime results tell me that I CAN get control if I keep working at it.

Try not to dwell on how 'bad' you have been until now, worrying about it won't change it, just focus on where you are going from now. Remember too that perfect control doesn't exist - there are so many things that might throw you off course occasionally, like catching a cold, so don't be hard on yourself for having a wobble now and again.

Lots of luck x

 

[Juicyj]

@Tickley93 Hey Tickley, did you make the call ?

 

[RAPS_od]

I need to find the motivation for myself, but i'm just not sure where it is..

I think it takes changing the way you think about food, cheating, all the things that are taking you off balance. They're not giving you what you want; they're keeping you from what you want. They're HURTING you. If these things were your love interest, would you stay with them? If it was your parent, would you want to get away from them?
It's time to consider what pleases YOU, what YOU want out of life, and how YOU are going to do it. If someone told you you COULDN'T have what you need, would you fight to have it?

 

[diabetic12yrs]

Hey,

So i really don't look after myself, like at all.
Diagnosed when i was 7.
As soon as i was old enough to manipulate my levels to gain access to sweet foods its all i did.
Used to over compensate for breakfast so that i would have a hypo during second class, this would allow me to take a friend with me to the medical room in school and have a dextrose tablet and chill out (skipping class) did this daily...
When i was in my teens (23 now) and was on injections, i used to make up my levels in the little booklets so my doctor would think better of me. HbA1c was at 14.0+ for a good couple years...

Had a pump for 5yrs now,
HbA1c over that time went from 14.0+ down to 8.9 last time i went. (fluctuated a lot between those numbers over the years)
I probably see the nurse or doctor once a year, sometimes longer.. (kept my doctors at home, went to uni, cant make the set appointments + sometimes i used to just not go, if i'm honest)
When i did go in i would 'forget' my blood meter, so they couldn't look at my real levels, then i could just blag it..
Have a friend who works in pharmaceuticals, he dragged me down the hospital aisles of diabetes related amputations and blindness etc. patients.. I appreciate that i'm walking down the same road, but on the day-to-day basis, i don't seem to care.

Now to the present day.
I know i'm a complete idiot, and its a miracle i'm not already looking at complications due to my poor control, but i still dont seem to care. The last time i checked my checked my levels was 2 weeks ago (which is f*cking ridiculous) and i only bolus if i start to feel weird.. (slight cramping around my lower stomach, headaches, feeling sick etc..) I eat whatever i want, whenever i want it..

My body seems to have adapted to survive on the base basel rate of 35mmol of novorapid throughout the day, and just 'cope' with the food i'm eating, with zero knowledge of what my blood levels are.

Every single time i neglect my Diabetes, it pings in the back of my brain, but a cocktail of laziness, denial and straight refusal to put in the extra work stops me from doing anything about it.. My glucose meter is in my bag, with me, but i wont use it.. Madness...

I read through the forum and see people panicking over slight changes in their levels or food intake, and i wonder if i'm seriously wrong in the head, but i cant seem to find the motivation to do anything about it, i don't listen to anyone, i just 'nod and agree' to all nurses and doctors.. I lie to my parents about how im doing to keep them from asking...


What can i do? (Sorry that was a lot longer than expected)

I am in the exact same boat right now. Denial and trying to lose weight. It's such a struggle

 

[RAPS_od]

I am in the exact same boat right now. Denial and trying to lose weight. It's such a struggle

I'm very glad you're here. There's a lot of experience here for you without judgement.

 

[Tasha87]

I didn't read all the comments and maybe someone already mentioned it. Set up alarm on your phone let's say about three- six times a day. It will remind you to check your sugar. That helped me some time ago. Or maybe you can get cgm. That thing is a holy grail. What can be a motivation for you? You said you have a friend who works at the hospital and showed you some ppl with diabetes who unfortunately have so many health damages because of diabetes. Maybe you can volunteer there sometimes. It Definately would help me to start to take it seriously. You are a smart young man! I'm sure you will succeed in it! I wish you the best! Let us know how are you doing now

 

[Tasha87]

you are lucky to get a pump and should appreciate it. I have been type 1 for over 50yrs my injection sites went bad, Got 2 badly frozen shoulders, and had 3+5 laser treatments. Also recently sugars went out of control. I asked for a pump and because I have a hba of 50 consultant says cant have one...Its not fair.
All I got was a change of insulin.The NHS is terrible and biased

Hello! I'm so sorry about your experience with the insulin pump I can't believe that they deny ur request for the pump especially that you have deal with diabetes for such long time.where are you from?

 

[Bubs_p]

Hi, I admit this is exactly what I did, now 33 and have changed my life around to look after myself. My hba1c is around 60 from over 100 and whilst at uni skipped appointments and didn't test. When I was around 28, 25 years after being diagnosed I have retinopathy problems, diabetic changes to the eyes. I had to have numerous laser treatments and an operation to my left eye. The right eye seems to have settled but only since I started to look after myself.

If I could describe this to you it's like having a camera flashes in your eyes repeatedly and is not fun. Followed by injections in the eyes.

I know this feeling all too well and wished I could turn back time. Trust me, no one took me to one side and told me these things could happen and perhaps would have had no effect.

I can honestly say, before it's too late, make a change, not that I would wish this on anyone, it's never too late, but the sooner the better.

I really wish you all the best in getting control but please make the effort, it will payoff in the end I promise.

 

[lhawksfield]

Hi Tckley93

I've been there, had it 22yrs now and had good control all through my youth but lost it at uni, struggled when I started working and went into that same denial phase... then noticed the "positive" side effects of running high and working in fashion meant I could eat and stay skinny but I had a lot of sick days and tried to bring things back into control 2 months before my HBA1C tests... for a while it worked but during a break up after 10 years with someone, plotting a mortgage, depression, stressful job in London and then being told my eyes might be damaged in a blasé letter from the hospital I panicked and hut rock bottom. Your friend has done the right thing by showing you the consequences but it's only when they start happening to you that you'll truly panick... the consequences are really then. I have permanent thyroid damage, bad eyesight but its luckily improving. I realised that of all the people who get type 2 through over eating and unhealthy lifestyles if they had the chance to change their habits sooner they would and we're the same if we end up losing our sight, limbs or getting heart damage we'd very quickly wish we'd changed our habits sooner. The first step absolutely is the hardest because it's scary, you put weight on and feel like you're not in control but after seeing the damage it was all doing to me and my relationships because of my moods when I was high I wanted to get my good control back and the fear then was how long it would take me and not how I'd do it. There is sooooo much help available and the more you ask the more you get. It does take time, it drives you friggin nuts and frustrates you send often makes no sense at all but it is absolutely worth it when you start feeling clear headed, less tired and depressed and much calmer. The fact you've acknowledged that you not caring us ridiculous is a good sign ; ) no matter how slowly you do it just do it because every step in the right direction is success. Well done for writing you're post and taking those first few steps. You've already achieved a lot so stick with it!!

Sending you lots of happy thoughts
Laura xx

 

[ronialive]

Hey Tickley,
welcome to the clannies of diabolics. I have been where you are and it is a hard pit to get out of- but you have taken a step in the right direction. All hospitals have a psychologist now for people with log term health conditions as many struggle to cope and have depression after about 10-20 years. I was lucky and referred about 5 years ago. I have been diabetic for 43 years.
They didn't lecture or nag or tell me I was wrong- she just asked why. why do eat that. why don't I write down my results. I started making excuses about why and gradually thought I don't know why- I will try. And so it started to change and I started to want to get it right. Then I started to feel better.
This week I have not been happy with my control and have decided to buy one of the new libre systems.
One step at a time.
maybe asking to be referred to the psychology department will help you to understand you.
maybe not
but what is there to lose.
Keep talking and keep trying and maybe set just a small goal each week. A good one is to blood test before bed and first thing and write it down.
what pump do you have- I have an Animas vibe

 

[Bizzy-Bee]

It's really brave of you to talk about all of this. I think you've done the right thing and taken a step in the right direction by writing on the forum.

As many others have, I've been where you are. There was a time when I just wanted to be normal and eat and drink what I wanted with my friends.

I actually sought congnitive behavioural therapy to help change the way I was thinking and it really helped. I think many people ignore the psychological effects of diabetes and how it can damage your mental state. I went on the dafne course which gave me so much more control over my life as I learned how to carb count and Bolus correctly.

There is still time to turn it around and I wish you all the best. The forum is always here for you!!

 

[Bexter1111]

It's scary how alike my story is. I was diagnosed at 5 (now 23) and I'm definitely a diabetic in denial.

I used to hide doctors letters from my mum, if I did get dragged I'd lie about my blood sugar readings and hide my machine, HBA1c was sky high. Ended up in hospital 3 times with ketoacidosis still didn't knock any sense into me. The school thing too I used to,have an 'emergency box' but I used to lie that I always needed it!

Recently been diagnosed with neuropathy and retinopathy though and that seems to have been the only thing that's knocked some kinda sense into me!!

Been put forward for a pump too, as skipping my lantus and other injections haven't done me any favours

I totally get where you're coming from and it's just frustrating when people who don't have to live with it tell you to 'look after yourself better' I still can't deal with the fact I have diabetes even with complications starting!!

 

[ronialive]

you are lucky to get a pump and should appreciate it. I have been type 1 for over 50yrs my injection sites went bad, Got 2 badly frozen shoulders, and had 3+5 laser treatments. Also recently sugars went out of control. I asked for a pump and because I have a hba of 50 consultant says cant have one...Its not fair.
All I got was a change of insulin.The NHS is terrible and biased

go back to them and evidence the points in the guidelines- you don't have to meet all of them.

 

[Caerdobi]

This is going to sound harsh, and I'm sorry, but you need to grow up and stop pissing about with your body.

I was EXACTLY the same as you for years - didn't bother going to clinics, didn't test my blood, ate ****, and what it is based on is arrogance. You think you can wing it and you'll be ok because you don't have any complications. I used to go to the clinics and hate getting lectured, thought I knew it all from the age of 18-30 or so. Thought the doctors were just nagging and I wasn't as bad as everyone else. I remember going to a clinic at uni and the doctor told me I was slightly overweight - guess what? walked out, never went back.

In reality, I was just in complete denial like you about having the condition.

What you will find out if you carry on is that you get retinopathy in your eyes, or loss of feeling in your fingers. As you hit your late 20s and early 30s, you'll put a bit of weight on, things which seemed so easy 10 years ago like playing football, going clubbing, even getting up in the morning and seeing properly will start to go wrong.

The damage is cumulative mate. There's no going back. The illness we have isn't something you can think "I've got a few years of being young and not caring, I'll start worrying about it later". Every time you run high, every time you forget an injection or drink ten pints and go to bed without checking yourself, is another nail in your coffin.

I'm 36. I did everything you've done and I have severe retinopathy in both eyes, and suffered a heart attack last year. I was (and still am) fit, played loads of football and rugby, but it didn't make a difference long term. I love motorsport and driving, so the thought that my stupidity when I was younger may eventually force me to stop driving is a massive regret to me.

sorry but that's how it is. Either deal with the fact you have a serious condition, or accept the fact you will lose your sight/limbs/health - much sooner than you think.

I will say that since I moved to the Freestyle Libre monitor I now check my glucose probably 20-30 times a day rather than sporadically. You should try this, as an "unwilling" diabetic it made the hugest difference to my life not having to finger-prick.

 

[the_anticarb]

Hi. I hear you. I was diagnosed at 15. couldn't get my head round it all. Why me? Didn't want to be different to anyone else, resented having to do anything to acknowledge my diabetes. I'm ashamed to say it took me 17 years and a pregnancy before I finally started to take control of things.

For me, the threat of complications was never enough. They had to actually start happeneing before I took things seriously. Then the guilt and fear came. I realised I had underestimated my old foe diabetes. It will take you down if you let it.

I really hope the same thing doesn't happen to you. The fact that you're posting on this site is a good start.

 

[richyb]

Hello! I'm so sorry about your experience with the insulin pump I can't believe that they deny ur request for the pump especially that you have deal with diabetes for such long time.where are you from?[/QU
Like to say but it would likely be removed