Unrecognised But Oh-So-Real

This post is mainly a story, with a story within a story, so I’m sorry if I bore you to tears, however, this is important to me and maybe it’ll mean something to you too. Apologies for the length, it’s difficult to summarise a lot of this.

It’s the start of Diabetes Week, as you may (or may not) know, I am a Type 1 Diabetic, December 29th 1997 (at the age of 8) I was diagnosed with diabetes, at the time I had no clue what sort of impact this diagnosis would have on my life, I can still remember life before diabetes, before injections and before blood tests.

someone I love

The story I want to tell you began in September 2003, almost 6 years after my diagnosis, I was 14 years old and whilst I didn’t like my injections or blood tests (who does?), I tolerated them and dealt with everything as best as I could, the year had been good and bad, I had a hospital stay due to dehydration during the summers heat wave, however, I had been put in touch with JDRF UK and my family and myself were taking part in their Walk to Cure Diabetes, I had even arranged a non-uniform day at my school to raise funds.

On Friday 26th September my Father had a heart attack, I remember everything slowing down even though we had to hurry. There was a rush taking my older brother out of school (I had a teacher training day and my younger brother went to the same school my Mother worked at) and we rushed, along with a couple of my Aunts, to Guys Hospital, London. I remember waiting for hours before we could see him, it was awful, he was hooked up to every machine imaginable, unconscious and unresponsive, this wasn’t the same man who said goodbye to us all before he left for work that morning.

The next two weeks were a blur, I held the non-uniform day the following week, raising £1500 for the charity, I completed the Walk to Cure Diabetes with many, many members of my family on the following Sunday. All I remember from that is the Friday morning, 10th October at about 5am I woke up to use the bathroom, my Mother heard me and took me downstairs, my Aunts were there, I knew what was coming before my Mother opened her mouth… All I can say about that is, I felt my heart break.

From this incident, I went down an incredibly dangerous road, when I was diagnosed diabetic my Mother was warned that I would go through a ‘rebellion’ throughout my teenage years, neither of us imagined it would be as bad as it was. I suffer(ed) from Diabulimia.

Diabulimia is not a recognised medical / eating disorder, until last year I didn’t even have a name for what I was doing. Diabulimia is when a Type 1 Diabetic deliberately stops taking their insulin, usually for the purposes of weight loss. Whilst weight loss was a factor for me, my main reason was not wanting Diabetes anymore, I wanted to feel normal and like I had some control that wasn’t dictated by an injection every few hours.

After my Father passed away I starting skipping injections, I was surprised by how easy it was, I had to take my lunch time Nova Rapid as this was monitored by a school nurse, but at home, I took one Lantus dose most days (Levemir when I changed insulin) and I wrote false readings in my test book. 16 days after my Fathers passing (on my older brothers 18th birthday) I was sick, I felt awful, I couldn’t move without vomiting, I was hospitalised with DKA that day. I know what you’re thinking, was that all really worth it? Of course not! So you stopped then? Well… Unfortunately, breaking a habit / addiction isn’t that easy.

After 3 days in hospital, I was released, my sudden DKA was blamed on an infection (I got away with it…), it was over a year before my next incident. My Mother met someone and he moved in, he made her happy and none of us had a problem with him, unfortunately, I was lapsing into my old dangerous habit and on 26th December 2004 I was admitted to hospital with DKA, my Mother knew I ‘forgot’ injections and questioned whether this happened because I didn’t like her partner, I told her I had no problem with him (truth) and I must have forgotten (lie). I still feel terrible for lying to my Mother, I just couldn’t let her down, I felt dirty and disgusted with myself for having this secret, I felt that no one would understand and everyone would tell me what to do, this secret, I felt I had control over, I was sure another hospital appointment wouldn’t happen again. After 2 days I was released from hospital.

Almost 2 years went by without incident, in November 2006 I was admitted to hospital in DKA, why? Yep, you guessed it! Someone hadn’t taken their injections. For the first time I was admitted to the adult ward at my hospital, I also had a nurse who asked my consent to insert a catheter when I was delirious (something I would not have consented to), I refused the Central Line they tried to administer (fortunately, the doctor agreed that it was not necessary). I was in pain and discomfort, however, for the first time ever, I seemed to have a doctor who understood, he acknowledged just how hard everything must be for me and how teenage years were probably the worst years to be diabetic. I was certain I was going to beat my Diabulimia this time.

Exactly one week after that, I was readmitted to hospital. For once, it wasn’t self-inflicted. I had been given a bad infection because of the Catheter I would have refused (I always refuse now, I am more than capable of walking). I was back in for a few days and determined to inject and blood test and do what I needed to do.

In 2007 (my worst year), I turned 18, I went out a lot more, I had my first ‘proper’ boyfriend (SA) and my first ‘proper’ breakup, I had a lot of decisions to make about my future. I don’t drink, and never have, so alcohol was never an issue for me, but it was a stressful and dramatic year. It was also a year that really changed everything. At the start of the year, I was miserable, I was still skipping injections frequently and I couldn’t remember the last time I tested my BG. When I started going out with SA, I thought I’d found someone whom understood me and with whom I could be myself (diabetes and all). In March I was admitted to hospital for 3 days, just before my Final Major Project show at college (I still did the show, after all, the show must go on)… I had no visitors but my Mother, at the time, I wasn’t concerned. The first slap in the face came in June (although I didn’t know it until October), I was admitted to hospital for 6 days, I was staying at a (former) best friends house at the time and she was more concerned that I had vomited on her carpet, rather than the fact that I was, in fact, dying. SA came to see me the day I was admitted, mainly because he was with me at the time, as did some other friends. My best friend came to see me the day after and promptly had a go at me, telling me I needed to see a counsellor. She didn’t once ask me what was wrong… I didn’t see SA or my friend again that week, I was in the hospital for 6 days.

Luckily for me, I had a wonderful DSN who first told me of DAFNE and managed to put me on a course where someone had dropped out less than a month after being put on the waiting list. DAFNE really opened my eyes. Carb counting! Why had no one told me of this wonderful thing before? Suddenly, diabetes had this whole new appeal, sure, it may mean more injections, but it gave me a brand new freedom I had never felt before. In September 2007 I graduated from DAFNE.

The following month I broke up with SA and I realised, looking back over the years and especially at June, my best friend was no longer my best friend. I started to clean up my act as it were, I began blood testing and injecting and counting my carbs, if only that were the final end to this happy tale. I was admitted to hospital once in February 2008, for 1 day (my shortest stay).

Since February 2010 (for Norovirus), I haven’t been hospitalised. February 2008 was my last case of DKA.

bigger probs than 6mm

My battle with Diabulimia is far from over, it’s remarkable how long an addiction / eating disorder can lie under the surface. Since 2008 I have still been skipping injections, usually taking 1 dose of Levemir and 1 dose of Nova Rapid in the morning, blood testing was far and few between. In late 2010 I was diagnosed with Maculopathy (a form of Diabetic Retinopathy), I have had laser treatment for this once in 2011 and I was told last month that I will likely need another batch before the year is out, this is all because I skipped injections and spent half of my diabetic life not looking after myself.

What has really pushed me to improve is the idea of an insulin pump, I began researching when an old friend of mine was diagnosed with diabetes last year and was really keen on the idea of a pump. My research showed me just how much pump therapy had improved since it was first suggested to me many years ago. I also found out that I was unlikely to be given a pump if I couldn’t prove that I could look after myself. I did everything from November 2012, I tested my BG and made sure I injected and carb counted. I corrected as necessary and kept records. I asked my consultant about pump therapy and he recommended me in March 2013, I was approved by the pump clinic in April and I have had the approval from the CCG. I start Insulin Pump Therapy on 3rd July 2013.

I have been on a huge journey with my diabetes and with Diabulimia especially, having people in my life that want to understand is so important, my boyfriend has been so brilliant and understanding and he has looked after me when I’ve needed it and I have friends who are curious and willing to learn. Stumbling across the DOC on Twitter has been a great influence as well, finding the people who understand you and what you’re going through, some having been through it too is just amazing, I may not know any of them in person, but that doesn’t make any of them any less like a wonderful (slightly crazy) family.

don't give up you're better than that

I want to say, if any of my readers are suffering from Diabulimia, speak up, speak to friends, family, the DOC, For me having support and the feeling that you’re not actually alone may have saved me years ago. I no longer feel as though I’m letting people down. I still struggle taking all my injections, but, more than ever, I know I can beat this. 

I may have Diabulimia, but Diabulimia doesn’t have me. Not anymore.

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11 thoughts on “Unrecognised But Oh-So-Real

  1. I went through this, and still find myself thinking about it, it’s a battle. Deciding to change is what sets us apart. At the end of the day I hope you see yourself as strong. It’s not easy to tell the world but it’s beneficial. I wish you luck and send you love! Take care.

    • Thank you so much, it’s certainly not easy and can be a daily struggle but my diabetes isn’t going away and the only way to feel and be healthy is to look after myself.

  2. Thank you for the follow and the link. What a powerful story, I was tearing up hearing about your struggle and growth through the years. I know people who still do not acknowledge their diabetes and are beginning to suffer the consequences at an alarmingly young age (almost complete blindness, neuropathy, etc) My heart breaks for the struggle you have endured, but I love the story and the hope it can offer so many girls who are experiencing the same feelings. I am so happy you will be going on a pump soon! It really is exciting 🙂 Feel free to ask any questions.

    • Thank you so much Sara, it can be a daily struggle, and when I was 21 I already had problems with my eyes and diabetic retinopathy. I’m hoping a pump will improve things vastly (at least I won’t have a problem with skipping injections with a pump). x

  3. Thanks for sharing your story. Living with diabetes can be so tough and particularly through teenage years. Your story will help lots of people with what they’re going through right now. Inspirational! X

    • Thank you so much Jenny for your kind words, I hope a lot of people don’t have to go through what I went to and realise what it took me years to realise, that having diabetes doesn’t have to stop me from doing anything I want to do, the only thing that can stop me is not looking after myself.

  4. Hello Lucy. Thank you for sharing your story. I’ve been T1D for 43 years now, and have never suffered this, but I have a T1D friend that means a lot to me who I’m trying to help. Your story helped me understand a little. Thanks.

    • No problem Rich, I’m glad my blog helped you out. I hope your friend can make it through this far swifter than I did. It’s a really tough road, but it’s wonderful when things start feeling when you get past the bad stuff.

  5. HI
    I am a student nurse and i am designing a leaflet about diabulimia, I am really interested in gaining the opinion of someone who has suffered from diabulimia about how relevant they think the information is for people who are suffering from the condition. I would be really grateful if you wouldn’t mind looking at it and giving me some feedback.

    Thanks
    Nicola
    my email is: 11017791@glam.ac.uk

  6. Hi Lucy,
    what an inspiring story! I would love to have a chat to you about your battle against diabulimia. are you around the london area?

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