Diabulimia: Recovery is not linear

This is a really long post, if you make it to the end, well, I have no prizes to offer you but congratulations.

On the 5 June I uploaded a blog post and opened up about my struggles with diabulima. It was hard, hard to write about something so heavy, so personal, and something that barely made sense to me in my own head let alone to other people. I was in a good place when I wrote that post, on the other side of an eating disorder that affects 40% of young adult females with type one diabetes. I spent a lot of the first half of this year trying to lose weight, trying to regain some "control" over my life, trying to find my self worth in the number on the scales. Then I told my diabetes nurse what was happening and what I was doing, and I was referred to a type one diabetes and eating disorders clinic, and I got better. Or so I thought. 

I had a few weeks where I felt good, I started taking my insulin properly. I pushed aside all the negative thoughts that I had around insulin and weight gain; I gained back the weight I lost and I did my best to ignore it for as long as I could. But eventually I gave up. I burnt out and I didn't recognise myself in the mirror anymore with how puffy I was. When you start taking insulin again your body retains water so you quite literally swell up, and one of the challenges in recovering from diabulimia is withstanding it for long enough until it starts to come off naturally, but I couldn't. 

I went back to where I felt "comfortable", with high blood sugar, with losing weight and with feeling empty. I went back to not having to worry about looking after diabetes, the water weight disappeared and my rings fit my fingers again, and I felt "happy" about the numbers dropping on the scales again. I was struggling again, brought to my knees by my desire to be slim - to feel like I had "control" over something in my life. The difference between the first half of the year and the spring and summer months was that I now had a specialist team involved, made up of a diabetes consultant and diabetes psychiatrists. 

They kick started my first "recovery" but the cognitions took over. I wanted to disappear, from them, from everyone. I got lost in my own mind, I felt like I was in a rabbit warren with absolutely no way to get out. Unapproachable, moody, irritable, I let all the negative thoughts take over. The only thing that brought me any sense of satisfaction was getting lighter. Our minds are so strong, and it is so scary how quickly they can take over. 

July saw mine and my sister's 23rd birthday, but it also saw my first ever time in an ambulance. At the instruction of my team I was asked to go to A&E, much to my frustration. My refusal to go meant my GP got involved, I agreed to go to the GP in the hopes I could convince them not to make me go, but I was more unwell than even I realised and when I realised I actually couldn't breathe I gave in - but not before one final argument with the ambulance crew when I tried to convince them I could walk to the ambulance on my own.

Everything was skewed. My perception of everything was wrong. My perception of myself, of what I was going through, of how unwell I got. Apparently when our blood sugar is really high we lose capacity, to think clearly, to make decisions. I was so frustrated that I was made to go to hospital, that I would have all those fluids, and that I would gain all of the weight back in 24 hours. I put myself through so much suffering to lose that weight, I ignored the burning in my chest, the burning in my legs when I walked up the stairs, the thirst, the sickness...and to gain it all back in an instant? It felt wrong. I felt like all my "work" was for nothing. 

I woke up in hospital looking like a puffer fish. Disappointed that I let myself get to that point but not apologising for any of it. To outsiders, its incomprehensible that I would do that to myself on purpose, but you cannot forget that this is a mental health problem, and one that requires a complete change in mindset, a team of specialist healthcare professionals, input from psychiatrists. It stopped being solely about my weight, but it became a control thing too. I couldn't let go of this. I am aware of the risks, of the complications I'm risking, of the stress it causes to not only my body, but to those around me - and the latter hurts me more than anything. However, it is not my fault. I have to allow myself to believe that, to know that, because to be kinder to myself was something I had to start doing. 

I left hospital completely triggered by how different my body looked, and not even 2 weeks later a similar situation arose, but thankfully no blue lights involved this time.

The guilt was and is immense, however. At my worst I had my family, the diabetes consultant and psychiatrist basically begging me to take my insulin whilst they waited for a bed on an eating disorders unit. Yet I continued to deny it, to deny my body the ability to function properly, to deny everyone around me peace of mind, to deny my team the knowledge that I would be okay on the weekends when they weren't around to call me in the morning. Back in September, just moments away from an admission to a psychiatric ward I pulled myself back from the brink. Just enough to be trusted to function outside of some sort of inpatient setting. I am so glad I managed to find that glimmer of myself amongst the chaos, to step away from those damn scales long enough to realise that I wanted to stay out of hospital. 

That's not to say I was better, but well enough for everyone to back off and "trust" that I would survive without an inpatient unit. It's hard to admit it, to think about it even, because I was in such a low place and no one outside of my immediate family and friends would have known this. I suffered in silence essentially, I continued working even though I could barely keep my eyes open. I'm so stubborn and so against people seeing me as vulnerable that I couldn't say anything. The true definition of surviving, not living. 

No matter how much people asked me to take insulin, told me to take it, begged me to, I couldn't. I had a mental block. I have the support of my family, of my friends and of the specialist team but I have to find it in myself to recover. I have to find that motivation. It's all well and good someone doing my insulin for me perhaps, or supervising me whilst doing it but that's not me, that's not me getting over the underlying issue - it's masking it. I feel like I am almost too self-aware to fully recover sometimes, I had started cognitive behavioural therapy but I figured it all out and knew what they were trying to do right away, I sussed the technique, the methodology behind it. I wish I didn't, I need my mind to be open enough to be manipulated essentially, and it's not. It's something I am working on however. 

I realised soon enough that recovery is not linear and there will be set backs. I have been slowly getting better and improving since September and I have come a long way, I'm back in a more positive mindset and certainly a more favourable position with all of this than I was a few months ago. I would never have imagined that I would go through what I've gone through this year. It hasn't only been frustrating in terms of diabetes but other things too; one of which being the heart breaking fact that May found us at my uncle's, my dad's brother's graveside, watching my auntie sob as she said goodbye to her teenage sweetheart - telling him through her tears that she'll love him forever, asking him how he could ever leave her.

Today brought a diagnosis of a form of autonomic dysfunction. It's not clear yet whether or not this is isolated or damage to the nerves around my heart due to diabetes. No matter which one however, the treatment is apparently the same. It feels like the reactions wouldn't be though. The topic of diabetes complications is difficult, diabetes is so unique in that it is basically the only condition that requires the patient to do everything. There is not a lot a healthcare professional could tell us that we won't already know, and everyday we carry the risk of complications on our shoulders. There is a lot of guilt associated with complications, the worry is that we'll be blamed, but I remind myself I didn't ask for diabetes in the first place and despite my struggles with it I try, so hard, and it's tiring - and I especially didn't ask to have a mental illness that means my hands shake when I have an insulin pen in my hand because the thought of giving insulin causes anxiety. 

My heart has been through so much this year. Emotionally and physically. 

It's easy to tell someone to look after their diabetes, to tell them to give insulin, to check their blood sugar, to count the carbohydrates in their food...but that's just it, it is easier said than done. None of this is natural. Even if you're 11 years in like me or 30 years in, you will always have moments of burnout, or times when you forget to do something, or you just don't want to engage. You could have diabulimia like me, and battle with the thoughts in your head everyday to survive. And you could give me every single reason under the sun as to why I need to look after it, you could show me photos of people who have lost limbs, are on dialysis, the list goes on - but it will not motivate me. You cannot pluck motivation out of thin air. If anything that can have the opposite effect. What you don't know is that we are a huge weight on our shoulders every day, the responsibility for our own lives, to avoid complications.

My point here is that no matter how much you think you know about living with diabetes, you don't. And I mean that in the nicest possible way. That is not to say I don't appreciate and thrive off of the support from my friends and family, but unless you have spent any time at all inside my head there is no way any one will ever know what this feels like. All I ask is that people are understanding, and aware of the psychological impact that diabetes has. It is relentless. Diabetes isn't the worst thing in the world, I truly believe this, so I always push the woe-is-me stuff to the back of my mind and I don't feel sorry for myself at all, but pain is relative and it is okay not to be okay. 

I won't end this post on a negative note. There has been lots of good moments this year despite how bizarre and distressing it has been at various points. I have been learning to look for goodness in each day no matter how small. It's in hearing my mama laugh, it's in phone calls that bring good news, it's in watching our kitten's eyes light up when she sees something she wants to play with, listening to music with my sister, telling my dad he smells as a joke and laughing at his response, seeing the sunrise, watching the sunset, gossiping with my "diabestie", talking to my friends, listening to my little cousin tell me about his school day, it's in hearing my other little cousin tell me that she thinks I look pretty even when I think I look like a sewer rat. 

We all go through sh**, but there is good. Reminding myself of that has helped me get through some tough times, some times are so tough that you can't even see beyond them - but when you're out on the other side look for something good. Diabulimia is part of the bad, but the days that aren't consumed by it, the days where I can be present and have a productive day, they're part of the good. I remind myself that I am so lucky to have such understanding parents and the rest of my family are amazing, my friends are wonderful, my friends with diabetes are incredible and I am fortunate to be part of a pilot scheme that treats people with diabulimia. 

Recovery is part of the good. So I'll keep trying to find it. Not only for me but for my family too. However recovery is also scary, this is the best way I can describe it - when I described that "comfortable" place earlier, that's an island that's right in the middle of the sea and I can get stuck there when the tide goes out, the shore is where I need to be - but in between the island and the shore is the ocean, and I need to swim to get there - I don't like swimming! But the tide will always go out, and I either get swimming or I stay stuck.

I think I need some arm bands though, my stamina isn't very good. I'll get there though. It's just not a straight forward swim. Recovery is not linear. 

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.