Hi Emily, I'm glad that you are currently being taken care of, and once again I'm sorry on behalf of your condition for what you are having to go through. We have never met, but It would pretty much make my year if you discovered a way to break the cycle, and I reckon all of us here are committed to helping you to do that.
I may be wrong, but I think that the vast majority of forum users came here because they were struggling to being with. That's well over 100,000 users. Time after time I read posts by people who say that they have turned things around after getting advice and support. Now, it's all very well me typing things like that, but we both know that I have done little more in this post so far than give you a sticker saying 'you can do it!' on it. That, unfortunately, is no solution for you. So I will try to give some constructive help to you now.
First of all, talk to people. It sounds so very simple, but we both know how hard it is. I got used to hiding my feelings away, and I did it aggressively. We tend to react in the way we are treated. I reckon that plenty of times you have been given the impression that you are screwing up, and it's all your fault, and people think you're just misbehaving. That's the feeling I had the entirety of my teenage years. And years of this turned me off to looking for help.
Let me say this.
YOU ARE NOT IN TROUBLE. You certainly should not be in any case. This is where a change of perspective can go so very far. My change came when I started seeing that people were only snapping at me because I was snapping at them first. I had become the catalyst for every argument that I was having about my diabetes. The hardest thing I have ever, ever done was to own up to my own failures. For me, there was only one underlying problem; I loved to eat. I was never overweight, so I lied to myself that everything was fine. And subconsciously, I knew that if I was to get the good control of my diabetes, my eating habits would completely have to change. I had tried and failed countless times to cut down to sensible portions, but I was just so hungry all of the time.
I was angry. Very angry. These people (My wife, my healthcare team) didn't have the **** answers, so why the hell were they getting at me so much? The thing was, I was right. They didn't have the answers. But neither did I. That was the hard part to accept. And I also came to a revelation;
No one could find the answer because I was hiding the question. I lied about my blood sugars, or just didn't test in the first place. My doses were all wrong because at appointments I would just pluck numbers out of the air. 'Oh yeah I give 1 unit for every 5 grams of carbohydrate,' stuff like that.
Then, I started to talk. I had an appalling hypo one night. My blood sugars were 1.8. Somehow my wife didn't wake for once, and I had to deal with it myself. I remember being in my kitchen, the fruit pastilles being so close, but my feet were slipping from under me. My heart raced faster than it ever had before, and my vision went. I felt like I was about to have a heart attack (and maybe I actually was). Somehow I got a couple of sweets in my mouth, and then collapsed. I came to a few minutes later, drenched in sweat. When I was able to, I pulled myself up and went to the bathroom. I stared at myself in the mirror, and I released myself. I poured all the hatred, rage and self loathing I had mustered into my reflection, until there was nothing left. I then told my reflection that it was **** well time to change.
The next morning, I spoke to my wife. I told her everything that was wrong. I told her that I had given myself scars on my retinas, that I knew how wrong I was getting everything. And I said some very, very important words.
I said that I wanted to change. I know someone who got their maths GCSE at the age of 28. They said 'I couldn't pass at school, because I was told to do something. I only achieved the result because I wanted to.' It was the same here. When we feel like we are being forced to do something, we naturally act against it. Once we realise that it's within our own control, then we can move mountains.
The craziest thing was, my wife already knew everything I was telling her. She saw the agony I was putting myself through. And I had dragged her through it with me. I don't think I could have hurt her more if I had had an affair. And what did she say to me once I had finished speaking? 'Ok, what can we do to fix this?'
I couldn't believe it. I had built up a fortress to protect my feelings. Or so I thought. I had actually constructed a prison for myself, complete with torture chamber. And suddenly, like that, I was free. The person closest to me was on my side. She always had been. She wasn't angry, she just wanted to help.
This doesn't have to be a partner, you can take this step with anyone, family in particular. It does take bravery, and the more open you are, the better it will be. I agreed with my wife to test more, and share my insulin doses with her before I injected. I still made mistakes, but now we were facing them together. I can't tell you what a difference it made. A high blood sugar was nothing to be ashamed of all of a sudden. We looked at what I had done, and discussed what to do differently next time. It was a strange feeling, having no shame or worry about discussing things. We tried different approaches, to meals, to injections, and various things to try and control my hunger levels. And finally, we stumbled onto a solution. During this time, I came to realise just how little I knew about diabetes. I had lived with the condition for more than 20 years, and just assumed that I knew absolutely everything there was to know. I was very, very wrong. I started reading books on diabetes, because I knew that there are plenty of people who do manage well. And it was this that led me to my current way of doing things.
The way I eat is controversial, and there are plenty against it. But I believe that it is by far the best approach to managing diabetes. I don't have the crippling hunger any more. My blood sugars stay more stable than I have ever seen them before. Rather than tell you, I would prefer to show you the solution.
This is a video of a talk given by Dr Troy Stapleton. He is an australian doctor, who was diagnosed with type 1 diabetes in 2012. He gives a clear and interesting account of his own journey with diabetes, and what he has done to take control.
Once again, I'm so sorry for what you have had to go through. But if you continue to show the bravery and mental fortitude you have begun to, you will come out the other side. Keep posting, whether it's to say you had a good result or an awful day. If you embark on the journey to improve your control, there will be failures along the way. Just remember, it's a process, not a quick fix. Best of luck when you are discharged from hospital, and I hope that you begin your journey to a much brighter future.
thank you again though, these heartfelt messages are such a lovely thing to be reading, seeing as I'm stuck here alone z
thank you again though, these heartfelt messages are such a lovely thing to be reading, seeing as I'm stuck here alone z
