We Are Survivors - Kayleigh: Never stop fighting.

May 01, 2012

I've had a binge eating disorder for as long as I can remember. I recall my parents locking the kitchen door and finding myself compelled to climb through a tiny serving hatch in a desperate attempt to numb my anxiety and thoughts of self loathing.

At the age of six I was diagnosed as a type 1 diabetic. Prior to the diagnosis, along with all the classic symptoms, I lost a considerable amount of weight. At first my parents were concerned I was being bullied but it soon became clear something more sinister was to blame. I had a difficult relationship with my diabetes and over the years would be admitted to the hospital many times.

At the age of 17, overweight and very depressed I spent a brief period in Foster care during which I lost some weight. When I went back to school I was greeted with much praise and I decided I wanted to lose more. Having a binge eating disorder and not being a great fan of exercise it was clear in my mind there was only one feasible option.

Initially I would skip the odd injection, particularly when I had overindulged. During the next year my obsession with losing weight continued, the weight literally fell off overnight and so a week prior to my 18th birthday I found myself in a situation where I was no longer taking any long acting insulin and was surviving on as little as 2 units of short acting, that was if I gave any at all.

I woke up severely acidotic, my blood sugar unrecordable. I had chest pain and was having great difficulty breathing, my head pounded, my mouth drier than the Sahara, my body so weak I could barely lift my head from the pillow. I felt a huge wave of Nausea wash over me, my throat burning as I vomited violently, sweat pouring down my face yet my body shivering uncontrollably. An hour later I arrived at the hospital in DKA where I collapsed onto the bed.

This is the last thing I remember......

Three days later I wake in Intensive Care, I have lines and machines monitoring every part of my anatomy. I can see the relief on my mum's face and suddenly I realize the Hell I've just put her through, I feel immense guilt however my next thought is that of panic and disgust when I realize just how much insulin and dextrose is being pumped through my veins. I start to wonder how much weight I've gained? How many days will I have to skip my insulin to lose it? The consultant reviews me and tells me that had I arrived 30 minutes later I would be dead.

This is the beginning of hundreds of admissions to the hospital in DKA and the first of 22 admissions to Intensive Care.

Between the ages of 17-22 I lost a dangerous amount of weight, last year with my body weak and riddled with complications including autonomic Neuropathy and chronic pain I found myself incontinent and on large doses of morphine. After several attempts previously to section me I was finally detained in a medical hospital to be re-fed.

Unfortunately during this time although I managed to gain the weight I received no psychological support and as such was unable to make any changes regarding my Diabetes management or relationship with food.

I've maintained my weight however really struggle with severe depression, administering my insulin, monitoring my blood sugars and managing my binging. Every day is an uphill battle and as a result of complications, especially gastric, I am rarely able to leave the house and do normal day-to-day activities.

Despite my many struggles I am still here today and I am still fighting. I still feel that I'm just "existing" as opposed to actually "living" my life but things are very slowly moving in the right direction. I've been given the rare opportunity of a Pancreatic Transplant. After considering the pros and cons of the procedure, my team and I feel this is the best option for me. I've found it extremely difficult to make even small changes with regards to my insulin regime and a transplant would help my existing complications worsening and new ones developing.

I've been working for several months with an Eating Disorder Specialist Nurse, progress is slow especially as my physical health prevents me from keeping my appointments. It's recently been suggested that I may benefit from inpatient treatment at my local EDU, but this is something that would be both physically and mentally challenging and I'm still in discussion with my team as to whether I'm ready to engage. Unfortunately my general health is very poor, I have numerous complications including Severe Gastroperesis and Neuropathy in my bowels. I'm very weak, in a great deal of pain and spend virtually all day every day trapped here at home with sickness and diarrhea. I have recently had an NJ Tube feeding trial as my stomach can no longer tolerate food, when my Gastroenterologist and ED team feel I am ready I will be fitted permanently with a surgical J Tube for which I will rely upon to nourish and hydrate me.

If I could turn back the clock I wish I'd sought help sooner but in the end I had become consumed by my ED and had reached the point where I could no longer look after myself. For anybody reading this and struggling, please know that you're not alone. Please never give up...there is always hope.

It's my hope that in the future ED-DMT1 is recognized as both a life threatening and complex mental health condition and as such criteria for both the diagnosis and treatment becomes readily available. I believe that nobody should suffer the ignorance or dismissal or be labeled an “uncooperative" diabetic that I have been confronted with along my journey.

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