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Complications age 25

I've had T1 for around 46 years and couldn't have cared less about my control for decades.
I reached 23st ate and drank what I liked when I liked ending up having to have Roux en Y bariatric surgery to lose 10 st.
Control far more difficult since losing weight as more sensitive to insulin.
My leg swelled (see pics below) and the calf split with the swelling.This changed the way I managed my diabetes even though the swelling turned out not to be related to my diabetes.
I've had so much retina laser there is no where left to laser due to scar tissue followed by a long spell of eye injections.
Since changing my habits I've had no eye injections for a few years and luckily no other complications.
I have just finished my Libre trial and have been allowed to keep it.Great for telling you you're going low before you feel it
Get the Libre.
Doing a DAFNE course in a few weeks.
Get yourself sorted and you're only kidding yourself by not telling your diabetic team the truth.
Good luck
 
I don’t pipe up much but I just want to say please don’t beat yourself up.
No one is perfect and things are different for everyone.
Writing this post was very brave, it’s not too late and you’ve got some great replies here.
Be kind to yourself
 
 

Hello ktkrshw. I'm sorry you are having problems at the moment, but you can overcome this. Use the help and support that your family, friends and the wonderful people on here can give you, but at the end of the day only YOU can make the necessary changes. You are so young and you have your whole life ahead of you. You have so much technology available to you to help you live a full and productive life and you must use it to its full advantage, I am now 60 years old and I have been type 1 for 57 years. For the first 25 years or so of my life there were no blood testing machines. The only way to check your sugar levels was by testing your wee with a test tube, 5 drops of wee and ten drops of water and a blue and white tablet added to the mix, which then bubbled away in the test tube to give you a reading. It was like a science laboratory!! It was very difficult and a lot of it was guess work. I have my wonderful parents to thank for their love, help, support and encouragement throughout my childhood and into adulthood. They never stopped looking after me!! In 1980 I married my fantastic husband and in 1983 I took a big risk and gave birth to our wonderful son. So ktkrshw I am living proof that there is life after being diagnosed with type 1 diabetes, and YOU CAN DO IT TOO. Stay positive, get on track, and I wish you all the very best. Good luck.
 
Hi everyone,
Thank you for your kind messages and sharing your experiences. I had my general check up yesterday and decided to be honest about how i've managed (or not) my diabetes. It wasn't my regular nurse I think it was a nurse who was covering and I felt she didn't have much to say or advice. I ended up crying and talking about how i've been lying about my sugar and I feel like i have no energy all the time and my numbness / tingling in my legs. My HBA1C levels have gone down, but i think this is due to them been so much at the opposite ends of the scale all the time. I have been really upset the last few days but wish I had joined this forum sooner as I didn't realise how many people there is to talk about our condition! The good news is, the nurse is referring me to the DAFNE program so hopefully this may help. I had the first normal readings for a full day in a long time today. Next week I will be changing insulin. I am feeling a bit more positive. I just hope I can improve on my health and stop the numbness in my leg from developing. Is it possible it could go away or is the damage done?
Again thank you everyone it has been really eye opening for me to hear your stories!!
 
ktkrshw said:
The good news is, the nurse is referring me to the DAFNE program so hopefully this may help
Click to expand...

That is good news, ktkrsshw. I did DAFNE a couple of years ago. It really bucked up my ideas, and made me think a lot more about how I was managing my T1.

There was a kid about your age on it who really didn't want to be there. Said her mum made her go! By the end of the week, she'd been steered towards getting it, partly because of what the trainers were saying and partly because of what us old-timer T1s were saying.

At the end of the week, she wanted to run at 4 to 7 instead of above 10, it wasn't a hassle, it was something she wanted to do, and she'd been given a lot of tips and tricks on how to do it.

She was cruising towards complications, you seem to already have a few, we can't give any definite answers on that, all I'll say is that there's a lot of evidence that if you pin bg and a1c down to decent levels, the body is good at repairing itself, complications can disappear, but it does take a bit of work, time and patience.

Good luck!
 
Good news is you have caught it early and your body will recover from bad control just get your weight down and test more often in my teenage years and on from that I drank like a fish going out 4 to 5 nights a weeks drinking upto 15 bottles of lager some nights as I have got older i am more cautious, other diabetic I know did the same each with their own story. What's a bit of eye damage I permanently damaged one eye without the help of diabetes when a stone hit cornea I used to continually go over why it happened but you get used to it, try not to reflect on past and remember to test regularly
 
Glad to hear your going on DAFNE @ktkrshw it will really help and more so for the fact you will meet other t1’s who you can relate to. Well done for being honest, I had a few teary meetings with mine when I had a rough patch - they can’t say much but having an honest conversation lifts a great weight, you will get there but one day at a time and don’t beat yourself up if things go wrong (which they do), and keep us posted
 

Hi, you have had great replies with great advice and lots of support, I can't really add to that, but by posting on here you have taken your first ''baby' step to a brighter, happier future. Take care, we are all rooting for you x

'What lies behind us and what lies before us, are tiny matters compared to what lies within us'
 
Good news about the DAFNE course, it should help you no end @ktkrshw .

Did the course about 8 months ago despite being diabetic for 37 years and I learned so much.

Main thing to do going forward, is test regularly, at least before every meal. If you know what your BG is you will then be able to know how much insulin to take. That and carb counting are the most important parts of type1

Come back and lets us know how your are getting on. We are all here to help you. Feel free to ask any questions, someone on here will know the answer
 

Brilliant news on the DAFNE course AND being honest with the nurse. Small steps BUT huge steps in the long run. Proud of you
 
@ktkrshw Having diabetes is hard, and it often sucks! But like @Grant_Vicat, @SamJB and so many others have said.... you can turn this around! I was diagnosed aged 3, and like you spent most of my teens not caring about my diabetes. I actually managed to go over 9 months without testing my sugars, like you say by lying to the docs and "forgetting" to bring my blood tester to appointments. I am now reasonably well controlled (I dont think anyone can ever be perfectly controlled, we all have wobbles!) and it is down to testing my sugars. The first few weeks are hard, but you have to make it a habit and then it will come naturally. A few things that really helped me were:

1. Getting a GP/Doctor who you really like/trust. Once I opened up to them, they were really understanding and we set reasonable goals so I didnt feel like I had such a mountain to climb (e.g. 2 tests this week, 3 the next etc...)

2. Getting a blood glucose machine you like.... sounds odd I know, but one thing I hate about blood testing is the hassle, the test strips get everywhere and the clean up. I now use the Accu-check mobile, which has the test strips built in, and 6 needles in each pricker. I can test, and shove it back in my bag in 30 secs without worrying about the setup and getting rid of bloodied test strips.

3. Setting a phone reminder to test. I am one of these people who doesnt like other people telling me to test (I feel like they are nagging me, although they are not really!) so having my phone remind me was much better! If you would prefer having a person do it then go for it!

There is so much support on here, if you just want to vent, or tell us about your successes, however small you might think they are! Someone else is almost definitely going through what you are, and most of the rest of us have been through it at some point! We are all in this together.

You can definitely turn this around, it is never too late to make the change, and everyone here is cheering you on

Bex
 
Today is a new day! Sounds corny but it’s true, start now and you will get better , no one knows how much until you start!

Get a CGM like the Libre so you can monitor easy so you can get a handle on it easier . But start testing and eating right, the good thing is your numbers will start changing right away!
 
Hey,
So I haven't read all the other comments. I stopped after the last 2. And I noticed you posted this 9 weeks ago but hey I hope my story helps just a little.
I haven't been diagnosed that long in the grand scheme of things. It was 3 weeks before my 19th birthday that I was, I'm now 24. Wow 6 years, longer than I realised haha. My birthday is in May and the September of that year I was off to Uni. I feel like I got a handle of it quite quickly, I'm relatively smart so I understood most of what I needed to do. But the summer that year I had a honeymoon period that was so strong? that I had to come off insulin all together. I had just got a grasp on it all and I suddenly I didn't need to. Then it all went down hill. I was off to uni and my sugars started rising. But I was off on my own, I never registered at the doctors at uni, I never properly took either of my insulins just when I felt like it. I only picked up my prescription when I went back home. I should mention I also have hypothyroidism. Which I also didn't take my medication for regularly. So probably evidently I didn't measure my blood sugar all that much either. I started uni at probably around 11/12 stone.
Anyway fast forward 3 years or so, still not properly looking after myself but doing a little better. I had a ridiculous job behind the bar doing mad hours but I met my boyfriend. It got pretty serious and a year later we wanted to move in together and I really needed to get it together. I got a proper job with better pay, I let him help me with my control.
And again things went downhill. With my sugars getting into such good control all the complications suddenly arose. I'm not going to get into the details of all but one was that I got hideous shooting pains but and down my legs. Especially at night which obviously kept me awake which drove me insane. I also dropped down to about 7st from not looking after myself and all the anxiety and depression and stress didn't exactly help.
Anyway another year and a bit later here I am, still a lot better than I ever have been but not perfect. The pain has mostly gone from my legs but it's left some numbness. Small patches on my legs I can't feel anything. I also have lost the sensation of heat and cold. I walked into the sea last summer on Cornwall and I felt nothing. Not until it hit my back and boy it was freeeeezing.

I'm not sure if I will ever feel temperature hit my skin again however I can tell when my legs are getting warm or cold. Which is an improvement. But not the best.

As long as you're trying to do something about it, you are already bettering yourself! Don't stress but do talk about it. That was the only thing that got me through everything. I went from bottling it all up to exploding. I needed to talk about it. I needed help!

I hope you find it! I hope things improve. And if you ever need to talk, people here are really great! Good luck!



 
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