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Friday, 5 June 2020

Insulin is not the enemy

Our minds...they make up who we are, how we make all of our decisions, our behaviour, where our thoughts reside, the place we can never leave, even if we want to so badly. I started writing this post a couple of weeks ago during Mental Health Awareness week, but I stopped and I shut down my computer. This isn't something I've ever spoken about publicly before and something I've always struggled to put into words, because it's heavy, and it's confusing and everything that's wrong to those who don't understand. It's backwards, and it's messy but it's my reality. It might feel heavy but I want to talk about it...

A few weeks ago I was a significant amount lighter than I am now, my mouth was always dry, I couldn't walk up the stairs without feeling like I was going to pass out, my chest was constantly burning, I was always feeling nauseated, I was almost like a zombie. At the beginning of the year I decided I wanted to be slim, I wanted to lose weight having always felt extremely uncomfortable in my own skin, so I stopped taking my insulin. I have what's known in technical terms as "Diabulimia". 

Eating disorders and insulin omission has been reported to affect at least 40% of young adult females with Type 1 Diabetes. Living with diabetes means I have to pay extremely close attention to the amount of carbohydrates in everything that passes my lips, so that I know how much insulin to take in order to keep my blood sugar under control. It's unnatural. Every aspect of my life with diabetes is dominated by numbers. I was diagnosed at eleven years old and at first I had it down, I took it in my stride - but I struggled through my teenage years and still struggle with it now. 

I've never been in denial, but always found it "easier" to ignore it. High blood sugar became my comfortable place, I didn't have to worry about going hypo during the night, I didn't have to take notice of the carbohydrates in my food because I wasn't dosing for it. 

Every morning that I woke up unable to even swallow because my throat was so dry I was another pound lighter on the scales. 

I was so out of control of my diabetes but I felt like I was in control of my weight, and that was good enough for me. I was feeling down and distressed that I don't have control over the things I wish I could change. I felt uncomfortable. I wanted to feel something else, anything. I was addicted to the feeling. Addicted to feeling empty and void of any moisture, because it meant my body was burning fat. Insulin became the enemy. As many of you who read my blog will know, people with Type One Diabetes rely on insulin to stay alive - and I denied myself all of it. I knew I had to stop what I was doing but I was too busy fretting over this so called new "control" I had, when I had none. Too caught up in getting skinnier.

I saw a smaller number on the scales, but I was paying a hell of a price. 

I didn't tell anyone. Not even my family. Not because I wanted to shut them out, but because I was trying to protect them, I didn't want my problems to become theirs. It was a silent struggle. A battle between the two voices in my head; one that wanted to live, really live and be present and the other that always won, the one that wanted "control" and reminded me how unpleasant my own reflection is. It's a lonely fight, when you're the only one awake in the middle of the night because you're afraid to fall asleep.

My obsessive compulsive mind meant that insulin omission became a compulsion. I get anxiety about a lot of things and weight anxiety made it's way onto the list, and subsequently a "fear" of insulin. I convinced myself that if I started taking it again that I'd spiral out of control and get really hungry and gain loads of weight, and be hypo all the time and I didn't want to feel any of the frustrations that come with trying to control diabetes. 

I don't believe that self worth is based on your size, or how you look. If you asked me I'd deny that your dress size has anything to do with who you are or what makes you. Because it doesn't. So how could I put myself through that, take away my body's means of functioning efficiently, of staying alive? Because I didn't feel good enough, or pretty enough, even though I know I was never big to begin with - I just wanted to be smaller, because my mind skewed my perception of myself, I lost who I was. Eventually it stopped being solely about my weight, it was my control, it was a distraction from everything else, it almost made me numb.

Every morning that I woke up unable to drink water because I felt so nauseous I was another pound lighter on the scales. And I was struggling. 

In my mind insulin was making me "fat", and no matter how much I know I need it, my life depends on it, I didn't want it. I couldn't bring myself to take it. I don't feel bad for myself, nor do I want people to pity me, but life isn't easy and I can't deny the struggles my family and I go through and I felt so guilty that I might be potentially adding to the stress. I don't want to hurt them, I wanted to feel different, skinnier. I now know that opening up to my family was one of the best things I could have done to help myself recover. 

You can never understand if you've never experienced this, I've tried to express my thoughts as best I can but unless you've lived it you truly can't understand what it feels like to want to purposely deny your body what it so desperately needs, for whatever reason. It's so backwards. The fact that I was doing that to myself was painful, physically and mentally. 

Eventually I opened up to the diabetes nurse at clinic and she referred me to their specialist Type One Diabetes and Eating Disorders clinic. I've started Cognitive Behavioural Therapy with the psychiatrist and I've had a few sessions with her already. This is so challenging and most definitely not an overnight fix, but with the help of my family, most notably my darling mama, the psychiatrist, and the Libre, I've started to recover.

It's hard to talk about all of this and admit that it was ever the problem. However I'm learning not to be ashamed of it. It's a real issue and not all that uncommon, but I promise you it is not worth it. Thankfully, my heightened sense of self awareness has allowed me to take a step back and look at my situation via a different lens, and I'm grateful for that. I also think of all the people in my life who I love and I'd be mortified if any of them felt as bad about themselves as I do myself. 

I just wish I took my own advice as easy as I dish it out.

My thoughts around insulin and weight gain remain largely unchanged, but the sessions with the psychiatrist are allowing me to organise them and challenge them, and being in touch with the consultant means I'm bringing my blood sugar down in a safe, controlled manner. I celebrate the small, but relatively large victories like taking all my long-acting insulin in the morning, for a meal, or for every part of the day. 

I have gained back the weight I've lost, and I try to mitigate my anxiety in reminding myself that it's water retention but also a sign that my insulin is working and my body is hydrated and functioning. I thought I had control but I didn't, and I was worried about what the other side would hold - the weight gain, the water retention, the hypos. I don't know if I'll ever be content with who I am or how I look, not because of anyone else but because of what's in my own head. However, I am realising that we have to embrace every inch of ourselves, even what we perceive to be flaws, because you get one life, and one body that will do it's best to carry you through it. I can also guarantee that you are truly your own worst critic. 

The best part about taking my insulin is that I feel good, I have energy and I have a clearer mind. Yes I get frustrated and this is really challenging but I'm learning to change my mindset, and focus on the positives and it feels so wonderful to be able to break down those barriers and give my body what it needs. And now I do have control. 

I know now that insulin has never ever been the enemy, the biggest barrier was myself. 

I'm so grateful for the support I've had so far and I'm definitely moving in the right direction and proud of how far I've come. I'm such a different person to the person I was a few weeks ago. I've got the spring back in my step and I'll do my best to continue ignoring thoughts about my weight and continue to recover, and keep up my good work. 


  1. At one point I a bit over 370 Lbs. I had a strong desire to lose as much as possible . My issues was that I was taking as much insulin nand eating s much a i wanted.

    I found an endo who specialized in T1 weight issues. He significant reduced my calorie intake to less than 1,000 calories per day and my insulin to less than 2/3 of my average daily intake.

    Each two weeks he reduced calories, or insulin or both. In one year i had lost 100 lbs.

    I then went to WW - weight watchers and I am down around 70 lbs. It has been a long road, but today I am a little less than 200 most days, and feel better all over.

    There are no quick answers, but it can be done safely.

    Many blessings

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