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Foolish 35 y/o Seeks Support

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DanC

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5
Hello.

I was diagnosed with Type 1 Diabetes when I was 16. Life as a Diabetic started off reasonably well for me and I got my numbers down to within acceptable limits quite quickly (exact numbers are long since forgotten). However, things started to slip away from me in my early to mid 20s and to my discredit, I never really managed to get back the kind of control that I'd had previously despite numerous periods of "I'm going to be a better Diabetic from now on..." which rarely lasted much longer than a month.

Fast forward another decade and I'm 35 years old. I have a wife and two young children, plus an increasingly demanding career. I still do my 4 injections every day (missing one every now and again if I've forgotten my insulin) but rarely test and don't have much of a relationship with the Diabetes care team at my local doctors surgery beyond my annual checkups. I'm aware that my control isn't great but keep telling myself that it can't be *that* bad, even when I'm referred to the eye-screening clinic at my local hospital in 2013 due to the presence of pre-proliferative retinopathy. This shook me up a bit at the time and I promised myself to make more of an effort. I kept it up for a month or two and then forgot my promise and continued in the same way as I had before.

Then yesterday I had another appointment at the eye clinic. I almost didn't go as I'd lost the letter but had a feeling I might have had an appointment and rang them up to confirm. The result was that my right eye has worsened, so now I'm going to have it treated with lasers in an attempt to fix the damage. I spent the rest of the day wanting to scream, shout, cry, time-travel and generally just punish myself for my decades of stupidity, but in general it's safe to say that it wasn't a good day to be me. I can approach my situation a little more constructively now, while I wait for a date for the treatment to be arranged, and am trying my best to do whatever I need to do to improve my chances of keeping my sight for the rest of my life.

That's my story. The reason I'm sharing it here is that I don't want this to be another case of being the best Diabetic I can be for a couple of months. I know I've been stupid on many occasions, but I don't want to let my numerous failures in the past dictate my future and I want to give myself the best possible chance of improving things going forward, permanently. So, with this in mind, I'm hoping to engage with the community here and get myself some much-needed support from fellow Diabetics. Please bear in mind that I'm still pretty scared about what may be in store for me (regardless of how justified it may be) and have probably forgotten most of what I learnt when I was first diagnosed. Any constructive tips/ advice/ suggestions for someone in my position are very welcome. Thanks!
 
@DanC - Hello and Welcome. :) Ask any questions you may have. There will be other forum members along in due course to greet you and give you sound advice and support. I will tag @daisy1 who will provide you with some basic information.
 
Welcome @DanC, I am a type 2 newbie, I can only imagine how daunting the diagnosis must have been for you at the age of 16! You will find lots of friendly, helpful and supportive folk here... you only have to ask for help and someone soon answers!
I hope you get your bg under control again real soon! I have to admit that fear of complications is a massahusive motivation for me. My first retinopathy is this Thursday and the anxiety I have is ridiculous!
Could you get a local educational refresher course? I hope you can, if not there's a mountain of info here.
 
Hiya, @DanC!
I'm afraid I don't know enough about T1 to be able to give any constructive advice, and I don't know much about T2 either, having only been recently diagnosed myself, but I DO know that you are in the right place for support, encouragement and useful, helpful and sensible advice.
The only thing I would say, from 63 years of experience, is don't beat yourself up! We are all exactly where we are supposed to be for today and none of us can change the past - all we can do is use it as a useful lesson for the future. You have the best motivation in the world in your young family, and I know you can do this - for you and for them! :)
 
Hey Dan, ok so you've been foolish - most of us have so don't be embarrassed, well done on pouring out all your story and wanted to start to change,

lots of members will be along and offer advise, I think you may be best doing little changes at a time as you've tried before to just 'be a good diabetic' but it's maybe too much of a change at once, personally I'd suggest with starting to test your bg, even if just twice a day to start with and give you some kind of an idea where your numbers are at, does that sound manageable? :) these little things can slowly build up into bigger things (and become habits again) don't be too hard on yourself, you can do this, and think of the better quality of life you will have from making these changes!

Abbie :)
 
Hi @DanC, I ignored my diabetes for the first 28 years, stating with confidence that I would sort my self out before anything serious happened. Blood tests may have happened once or twice a month, sometimes less, injections were quite regular, however in the early years, I decided that I could just take all my injections in one hit, once per day. I would periodically decide I was going to start doing blood tests, but I think my biggest problem was that I couldn't value 1 or 2 tests per day, deciding it simply wasn't enough data to be meaningful, and I was unable to commit to doing more tests in a day. Unfortunately, I was too slow, and now have renal, nerve and eye problems.
Early last year, I saw a poster for the Libra CGM, and whilst my diabetic clinic were hopeless, I decided do my own investigation and after a few months, I bought "Think like a pancreas" and "Sugar surfing" plus another couple of books not really worth the mention, and read each them in a couple of days. I then started self funding the Dexcom CGM, and from that point never looked back.
I had lost faith in my Diabetic specialist, and, quite rightly, he had in me. Once I had proven to myself I was invested in the CGM, I changed to a different clinic, and started afresh. Being able to turn up with BG profiles, talking with passion about the results, and the technology and have a diabetic team who are equally passionate, has changed my life. I was able to get onto a pump in less than 7 weeks and I am treated with a completely different attitude, because everyone can see that I am now invested.
If I were in your situation I would:
1) Confirm I really do want to change
2) Read the 2 books above and consider
a) CGM
b) Insulin Pump
3) If you think a pump is worth while, Read "Pumping Insulin"

This process worked for me, but everyone is different. I understand CGM is prohibitively expensive for many, but I cannot put a value on it. Give me a shout if you want to ask me any questions, I am keen to bounce ideas and share my experiences so far.
 
Welcome to the forum @DanC

Do have a look at the book that @paulliljeros mentions as it cover most aspects of type 1 diabetes management. With regards to your retinopthy issues, the Ophthalmologist who will laser your eyes will only do what's necessary to stop your eyes progressing to the proliferate stage and will talk you through it all when the time arrives, it isn't painless just mildly uncomfortable. Here's some information about the condition:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

Just one other thing, do have a chat with the Ophthalmologist before you do start to tighten up your diabetes control, sudden improvements can in some cases make diabetic retinopathy worse and the usual advice is to make improvements slowly, if in doubt do speak with your diabetes consultant also. Good luck and best wishes.
 
Thanks for your support and encouragement everyone, it is very much valued and appreciated.

At present I am testing my blood sugars immediately before and 2 hours after each meal. I've only been doing this consistently for the last couple of days and the results haven't been so great, typically around 10 – 12, but at least I know where I am with them and am adjusting my dosage carefully to bring them down to a more healthy level. I'm avoiding the foods I know I should be avoiding and feel generally a lot more positive about it all than I have done for a while now which is half the battle.

Thanks for the book recommendations. I've ordered "Think Like a Pancreas" which should be here tomorrow. I will follow this up with some of the others once I've read it. Thanks also for the link provided by noblehead. It was very tough reading for me (emotionally rather than technically), but having read through it thoroughly, along with many of the pages that it links to, it seems that I may have reached the proliferative stage already as my doctor at the eye clinic talked about new blood vessels growing on my retina. I believe that treating these is the purpose of the laser surgery, but I was rather stunned and terrified at the time so didn't ask many questions and wasn't offered much in the way of further information.

One thing that still panics me is that I know I need to improve my control, but not too much too quickly or I'll just make things worse (as confirmed here – thanks again)! This seems like a lose-lose situation. I think I read somewhere that it should be by no more than 1% per year? Perhaps my current blood sugars aren't too bad if I don't want to improve too quickly, but I suppose I'll need to know what my last HbA1c was before that can be assessed.
 
Your story is pretty close to mine.....

I'm 32, wife, 2 kids, diagnosed since 15, retinopathy in both eyes, observable maculopathy in left......

hows the blood pressure? I assume you are on medication for it as a preventative anyway?

Have you been on any educational course like DAFNE?

If not I would recommend it, this changed everything for me and now I am on a pump.....
 
Glad you are finding the advice you've been given helpful Dan.

It's great that you are testing before and after each meal, hope you get into a routine of doing it and it doesn't feel like a chore for you. 10-12 is better than i was expecting you to say if I'm honest! As you said though you don't want to drastically change it so just stick with your small adjustments, it will be hard if you feel like something is working and you're going in the right direction but know you have to slow it down, but slowly does it :)

I personally don't really 'avoid' any foods, apart from ridiculously sugary/carby things, the beauty of insulin is it can cover what you eat as long as it's the right dose and done at the right time, so if you start to feel negative about that side of things just remember there is ways you can eat most things.

You can probably find out your last hba1c if you give your GP a ring n ask, although if you haven't had one done in a while it might be best to just ask to have one done now, keep going you're doing great!
 
Well done for making the first step which is to acknowledge it and want to do something.

Reading 'Think like a pancreas' will help a great deal, as it's written by a type 1 you can see it from his perspective, it will also help your mind focus more on your daily care and understand where you can make changes. Personally losing my sight is my main motivator for controlling my type 1, I couldn't bear the thought of not seeing my daughter grow up, we all have our personal motivations but it is these which help us want to take ownership of our type 1,

As others have said push your team to get onto DAFNE, it's a great course, it helps to meet other type 1's too and share notes.

In regards to managing your HbA1c, speak to your team about setting a target, don't panic too much about dropping it too quickly, but getting a blood test asap to gauge your result is your next job and will give you something to work towards. The help is all around you, it's just a case of asking for it ;)
 
Dan - have a look at the Freestyle Libre it makes day-to-day testing so much easier and will provide a clear overall picture of your control - ok it can have some issues (cost, accuracy and sensor failures) but they far out way the information it does provide.

If you're still near Reading I'm not that far away, PM me if you want, I'm happy to be bombarded by questions, or bombard you with annoying reminders to keep on track :woot:
 
Hi,

This is a good place to start to get back in control.

I recommend the Freestyle Libre (which is a sort of budget constant glucose monitor) which you could use for a few weeks to see what's happening to your levels all the time. I have one but only buy sensors for it a couple of times a year.

I'd also buy Dr Bernstein's Diabetes Solution. That was the core book that allowed me to really take control of my diabetes.

Think Like A Pancreas is pretty good but a bit US focused.

Read as much as you can though and read this forum from top to bottom especially the low-carb bit.

Best

Dillinger
 
DanC said:
One thing that still panics me is that I know I need to improve my control, but not too much too quickly or I'll just make things worse (as confirmed here – thanks again)! This seems like a lose-lose situation. I think I read somewhere that it should be by no more than 1% per year? Perhaps my current blood sugars aren't too bad if I don't want to improve too quickly, but I suppose I'll need to know what my last HbA1c was before that can be assessed.
Click to expand...

No it's not a lose-lose situation at all, the long-term benefits of good bg control are enormous not just for eye health but to prevent other complications resulting from uncontrolled diabetes (it does say this in the website I linked to earlier).

I've had diabetic retinopathy problems in the past but have been clear of problems for the last 12 years, still have to attend the Ophthalmology Clinic on a regular basis but I once thought it would be never ending cycle of treatment and did fear for my sight, however despite having had laser treatment when my retinopathy was active I still get issued with a 3 years licence from the DVLA and my eyesight still remains good to this day, so don't give up @DanC
 
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