Type One Diabetes: My Story

With it being ten years since my diagnosis this yr, World Diabetes today and after receiving a lot of questions recently, I wanted to dedicate a post to my disease, Type One Diabetes.  Firstly I am not writing this for sympathy, assurance or a pat on the back, but just to tell my story  as honestly and openly as I can in the hope that it might spread just a tiny bit more awareness.

Diabetes

I never imagined just over ten years ago that I would be diagnosed with T1d. I was a fit and healthy 17 yr old girl, on the cusp of adult hood. I knew that diabetes existed but I had no idea what it really was, it was ignorant bliss I suppose and I never thought that anything “bad” would happen to me.

Like many teenagers my age, I enjoyed alco-pops, midnight feasts and I didn’t think twice about what / where and what time I was eating and /or drinking. I can’t remember the exact moment I started to feel unwell but it was a good few months before my diagnosis. I was at a drama school for sixth form (Senior High School) and so I suppose the level of eccentricity was heightened any way and eating disorders absurdly part of the daily norm. My sudden weight loss was assumed by many as bulimia, as not only was I losing weight at a rate of knots (2.5 stone in 4 weeks), I was also constantly in the bathroom weeing and when I wasn’t weeing I was just drinking anything I could get my hands on (sugary or non sugary, it didn’t make a difference). I was waking up at 3 o clock in the morning with my legs both cramped in such acute pain that I would drag myself on my hands from bed to try to stretch myself out.

As I didn’t live at home, my parents only saw me during the Easter break and although they both commented on how “thin” I had become, they just assumed (like I did) that I was (at last) losing the puppy fat (17 yrs old and still my excuse). During that Easter holiday back home in Wales I had taken myself to the local village dr with the worst case of thrush the dr had apparently ever seen. In the weeks before eventually telling my mother and going to the Dr my roommate Lara and I had tried everything to get rid of it, Vagisil, Sudocreme and even natural yogurt, you name it, I’d tried it. I had no idea what it was and why it was so bad and to be honest I was mortified and embarrassed. If only I had told the dr then and there that I was weeing up to 40 times a day and that I had lost a crazy amount of weight- the puzzle would have been completed.

The irony was that during the easter break my dad had driven me up to Newcastle University for an interview. The whole way there we had had to stop at each service station for me to go for a wee! I had then bought several sugary drinks as I was so thirsty. Then the whole way back we had stopped at each service station and shamefully once on the motorway in a bush- as I was just so desperate and riddled with urgency and pain. My father said ” I hope you aren’t diabetic ” but I just brushed it off as the fact I was drinking so much, meant I needed to go! Little did I know….

It was the 5th March 2005 when I was finally diagnosed, I had taken myself to the school dr as I  I was feeling so down all the time, I couldn’t stop myself from crying and thought I had depression. The doctor checked my blood pressure which was sky high and said I was probably just finding the final school year and impending exams stressful. She took a routine blood count and sent me on my way. She told me to come back later to get some beta blockers. I went up to my room and fell asleep at 09:30am, I didn’t wake up until 18:00pm when the bell for dinner went. I had slept through everything, people coming in and out of my room and the school bells.

I walked down to supper and remember being first in the queue (which was a revelation!), I picked up my plate and went to get some food when my house master came in behind me and asked me to walk out with him. I told him that it was very rare to be first in the queue and please could I get some food first, he said I could get something later and that I must go with him. As we left, he put his arm around me, which I thought was very sweet, and therefore couldn’t mean I was in trouble.

The school nurse was waiting for me around the corner and she was crying, my best friend Lara was also waiting for me with her mother, Lara was crying too. I then burst in to tears, with no knowing why I was actually crying! The nurse just said to me, “we’ve had your blood test results back from the dr and they’ve told me to drive you to hospital straight away, there’s something wrong with your blood”. Probably not the best choice of words looking back.

The journey was a blur, but arriving at the hospital was surreal as there was about 4 people waiting for me with a wheel chair. “Can we prick your finger? Can you go for a wee? Can we smell your breath? Are you thirsty?…. the answer to all the questions, yes, yes, YES! then silence. Lara and I were sat in a ward on the bed, neither knowing what was happening. A lady appeared at the foot of my bed and picked up my notes, she took a very sharp intake of breath, looked at me, looked at my notes and then back at me “Are you not a well know diabetic, this is the highest sugar level (48mmol) I have ever seen, you shouldn’t be alive” and that was my welcome in to the world of diabetes.

The causes of type 1 diabetes are unknown but it is usually preceded by the immune system attacking and killing beta cells in the pancreas, which produce insulin. A lot of research shows that stress can act as a catalyst that causes type one diabetes. Hence why it’s also known as juvenile onset as many children will suffer viral illnesses and / or other physiological  stresses that in turn can trigger the sudden attack on the pancreas. There is, of course no definitive outcome of knowing why / when or if you will be diagnosed with T1D but for me there could have been a lot of different stress triggers.

Type One Diabetes My Story

I had a relatively unassuming and happy childhood until I was eleven and broke my arm in a horse riding accident. The arm was plated twice and I had two blood transfusions. I then endured two incredibly unhappy years at school, where I was isolated, victimised and indescribably lonely; it’s amazing what psychological torment such young girls can inflict on each other. From here I was moved to a boarding school as my parents moved abroad where I relaxed a little, started having fun and got up to a lot of mischief. I finally made a few friends and enjoyed myself, however I was incredibly overweight and was always trying to be “the funny one” and would hide myself in big baggy clothes.

I remember the girls taking me under their wing like a project one night and plucking my eye brows, bleaching my moustache and straightening my hair. It was a phenomenon and they were all so proud of their make over. I then went on holiday and used “sun in” on my coca cola coloured hair. All the other naturally tanned and beach blonde haired children were doing it so I thought I should try too. The beach goddess image in my mind did not resemble the outcome as the result was a rainbow of offensive colours, I looked more like a speckled hen. I travelled back to the all girls school I was at and was reprimanded to the head teacher who told me in no uncertain terms that I had to dye my hair back to its original colour. I did so, and only one day later my legs felt like they were on fire. I went to the bathroom and pulled down my trousers and screamed. My legs were red raw and covered in the biggest blistering lumps. For two whole years the same rash came up at the same time every single night and no amount of creams or ointments or dermatologist visits made any difference to it.

Finally I moved schools again, this time to a drama school. Theatre and art were my two true passions and this school gave it’s students every opportunity to flourish in these areas. There were also boys there! I was put in an all girls house and made some wonderful life long friends. I absolutely adored this school and I suppose my body started to completely relax, I lost weight and started to embrace who I was a bit more. Only 12 months later did I start showing the signs and symptoms for T1d.

Since then my control has been up and down, the first two years were probably the worst. I was meant to go straight to Edinburgh University to read Fine Art but I just couldn’t face it so soon after being diagnosed. I wanted to be at home near my parents and so I decided to take it as a year out and work. I worked hard and made a small group of friends in the area, we would go out and I would eat and drink what I wanted. My insulin routine was flexible so I could technically eat / drink to that extent but this just ended up with me having constant hi’s and lo’s.

I travelled to Austrailia and East Asia with my best friend Amy for the second half of the year and again I just ignored my diabetes. I still injected but I wasn’t sensible and looking back at this period of my life I wish I could have shaken myself and said “open your EYES”.  I wouldn’t tell anyone we met that I had T1 and I would do all I could to be the life and soul, which at the end of my travels saw me in hospital with ketonasidosis and a terrible urinary tract infection. I know I was silly but I was so lost and so lonely as I didn’t have any one who could relate to me and all my friends were off at University having the times of their lives.

I then started at Edinburgh University to study English Language and Literature. I was there for six months, in what turned out to be my wake up call. I had met my husband, Ports only 4 months before I started and was head.over.heels! He lived in London and I was in Edinburgh. I hadn’t told him I was diabetic and the longer time went on the bigger the lie became. I thought if I would tell him then he would be like several other people I had met and think I was some Mars Bar wielding alien, who injected with a 12 inch needle.

It was a Friday night and he had been to the theatre with his parents, I remember so vividly that as soon as he was home I was going to calmly tell him that I was type one diabetic. Anyway, the drama queen in me clearly didn’t want to address something so calmly… no sooner was he home was I in a blubbering state telling him that I had something so terrible to tell him that he would almost certainly leave me…. “are your having quadruplets?…..”, “Worsseeeee” I cried. Ports, always so calm and wonderful, with me all snot and tears held me in his arms and said “Emma, no matter what it is, we will work it out”… I then told him, and as the words (which I had replayed in my mind a thousand times) came out, I realised how insignificant they sounded!…. Ports laughed. Not a mean, vindictive laugh but a “you are CRAZY woman” laugh….. He of course told me that he still loved me and how could I POSSIBLY have not told him sooner.

I ended up leaving Edinburgh after 6 months as I was still all over the place, I moved to London and worked for a further 6 months before starting at a London University and studying English Literature and Theatre Studies. Being so close to Ports and having him nearby was a complete blessing. I still found it very hard to open up to any one and admit that I had type one but Ports was my anchor and we were a team. I held a job throughout my whole time at university and got my degree at the end.

Since I moved to London after finishing University 5 years ago I have firmly found my feet and since I got an insulin pump 3 yrs ago, I wear it with pride. My father always told me as a child that so long as he had my mother at his side and that my brother and I were happy and healthy he would be a blissfully happy man. That’s exactly how I feel. I love my friends, and I cherish each of them for the support they give me, but as I’ve got older I realise wholeheartedly the importance of those closest to you, as they will be the ones who look after you in your hour of need.  There is so much ignorance in this world surrounding Diabetes in general and I spent far too many years hiding from the fact that I had it. Even though I have never fully abused my diabetes control I have had a lot of highs and lows over the year and it is, of course, my greatest fear that I will suffer from the long-term complications as a result.

Hypo

My bedside table always has an array of diabetic goodies on it! I am never too far from a fresh orange juice for low blood sugars.

Diabetes (T1, T2 and Gestational) can affect each and every one of us and if it is not well controlled and monitored, it can not only cause debilitating and life long complications but it can also be fatal. Diet of course plays a huge role in blood sugar control as does exercise and I work so hard to try to balance the two, but sometimes it can just be a roller coaster- stress, hormones, sadness, happiness all play their little roles in working against blood sugar control. I suppose it’s one of those diseases that no one thinks will ever impact them, but it can.

In the UK Diabetes costs the NHS £8.8 billion a year 90% of which is spent on Type Two diabetes and 80% of that figure on AVOIDABLE complications. I am no saint, and I am not preaching or telling you how to live your life- as I am certainly imperfect in so many ways. I still eat things I shouldn’t, I probably don’t exercise enough and I worry incessantly, which I am sure, in turn can have it’s own complications on health.

I wouldn’t wish diabetes (of any type) on any one, it’s a condition that we live with on a daily, hourly basis and affects a lot of my choices, my mood, my weight etc. However, through eating a diet that’s free from gluten, grains, most dairy and refined sugars has helped me minimise the incessant highs and lows. I have heard people say “Is Emma still on that stupid diet” (funnily enough never to my face), and the answer is yes she is….ignorance is bliss for the majority of people and for those who have never suffered at the hands of an illness but  for me it’s not a diet it’s a life style choice. I never imagined that I could every feel well. After years of living with T1D I had forgotten what feeling well felt like. I don’t starve myself, I eat proper meals, in fact I eat more now then when I was eating a diet high in carbohydrates and processed foods. I don’t smoke, I rarely drink and 2 years on and I still take 60% less insulin than I took before I started Paleo. My weight is still 1.5 stone lighter (although I have put on a stone since I first started but I know that due to the amount of exercise I was doing) and I generally feel well. My mind is clearer and my HBA1C has consistently been around 6.0% which is very good.

Blood Sugar

My blood sugars generally range between 4.0- 8.0. I will usually correct anything over 8.0

Update (June 2016)

I am sure most of you have seen, but if not, I’m really excited to let you know that I am now 7 months pregnant (29weeks +5 days). My pregnancy has been mostly really good, although I did suffer from something called Hyperemesis Gravidarum during the first 13 weeks. This condition was nothing to do with my T1D but it did affect it and made my sugars really really low the whole time and as I was so sick and unable to eat or drink anything I ended up with high ketones- not due to high sugars but to starvation! My sugars were so low in fact that my HBA1C ended up being 4%. Since then my sugars have still stayed really low, there have been inevitable highs occasionally but I have been checking about 14 times a day so anything I don’t like I can correct really quickly. My current HBA1C at 29 weeks is 5.2%.

Generally though I have loved my pregnancy and I am so excited about the next 8 weeks. I am being induced at 38 weeks if the baby doesn’t come sooner.

If you want to read my pregnancy stories and more about my T1D and how I am coping, click here.


Facts about T1D (and me)

  • Type one diabetics are  insulin dependent, the pancreas produces no insulin (** ), this means they must have insulin on a daily basis in order to stay alive. This can be in the form of injections or an insulin pump
  • You can’t “catch” diabetes off me, so it’s ok, you can come a little closer
  • Type one diabetes accounts for about 10% of all those with Diabetes (the majority are type two)
  • Type one diabetes is not the same as Type two diabetes. Type one diabetes is an auto immune disease which attacks the pancreas of any insulin, it is controlled by self-administered insulin. Type two diabetes is a metabolic disorder characterised by high blood sugars in the context of insulin resistance. It can be controlled by diet/ exercise and / or tablets and in the most serious cases you will also have to inject
  • I don’t inject with a four-inch needle or eat a diet of Mars Bars and Iron Brew (yes, that was a question I have been asked before)
  • I have to prick my finger 4-6 times a day and some times more to draw blood to check my blood sugar. If I see a high number I have to correct it by injecting some insulin, if I see a low number I must have something sugary (a fast acting sugar like orange juice, medjool dates or dextrose), if I see a good number then life is great!
  • I have to think about every single food and drink I put in my mouth. What ever my blood sugar is I have to calculate the carb ratio and then adjust my insulin accordingly. For someone who struggled with Math at school I am now a pro when it comes to carb counting!
  • My handbag is very heavy!
  • Eating a low carb diet for me is the easiest way I can control my diabetes and makes me feel at my best. Exercise also helps me to keep my sugars in good control.
  • The insulin pump I am on is an Omnipod. It’s a wireless device that gives me a constant feed of insulin. I can then give my self extra (bolus) if and when needed, depending on what I am eating. It is the best thing I have ever used and as most girls question where their handbag is before leaving the house, the first thing I think about is where my Omnipod controller (blood sugar reader etc) is. You can wear the pod on your arms, stomach, thighs or bottom so it is very discreet- which as a 28 yr old girl I value highly. Very occasionally it does malfunction and when it does this can be a nightmare (sometimes an alarm goes off and other times it doesn’t which can lead to ketoacidosis pretty quickly if I am asleep and don’t realise). However, most of the times it is like having a working pancreas and I wear it with pride.
  • Type one is most commonly diagnosed in early childhood, however, you can be diagnosed at any age (most recently Theresa May has been diagnosed at the age of 58!)
  • I do wake up at 2am sometimes shaking, sweating and slurring my words with a hypo but I still get up at 6am for work, it’s just part and parcel of it all, and just something we all have to get on with.
  • My husband will get up with me every time I have a hypo and will stay up with me until I come back around to a normal level. I couldn’t do life with out him
  • There is no miracle way to control or live with your diabetes. Every single person deals with it the best way that works for them and what might work for one person, will not work for another. For example, I cannot touch oats! They send my blood sugar on a crazy high, it can take twice my daily dose of insulin to compensate for one bowl of porridge!

Diabetes symptoms

The symptoms of diabetes (type one or two or gestational) occur because the lack of insulin means that glucose stays in the blood and isn’t used as fuel for energy.

Your body tries to reduce blood glucose levels by getting rid of the excess glucose in your urine.

Typical symptoms include:

  • feeling very thirsty

  • passing urine more often than usual, particularly at night

  • feeling very tired

  • weight loss and loss of muscle bulk

The symptoms of type 1 diabetes usually develop very quickly in young people (over a few days or weeks). In adults, the symptoms often take longer to develop (a few months).

Read more about the symptoms of type 1 diabetes.

Complications

The last thing any type one diabetic wants to talk about  / think about or hear about are the complications of diabetes. I remember very vividly a girl from school telling me quite vindictively how her grandfather had diabetes (type two, but of course she didn’t differentiate) and that he didn’t have any feet and was blind… This scared me beyond belief and I remember crying myself to sleep for a long time thinking I would be taking the same path. We are so lucky living in era we do, as the medicine and treatments available to us is so far advanced. Flip back thirty years and there were no blood sugar meters and insulin had to be drawn out of a vial. If we look after out bodies the best we can then we can reduce the likelihood of complications. There are always going to be complications to everything in life, but so long as you are aware of them and do your best to look after yourself then what happens happens.  

I recently had a scare with my eyes. I was told that there were some changes in the back of my eyes, signs that aren’t imminently dangerous but they do signify diabetes and, I suppose a level of damage. This, as you can imagine had a huge effect on me, some one who takes their health so seriously and over thinks everything. However, thankfully on my check up last month the micro aneurisms that had been there had gone. I don’t want to dwell on it too much, as I can assure you I have cried far too many tears and even though I have been given the all clear there is always the impending “what if”. But, if we lived by “what if’s” we wouldn’t do anything and life is for living, so I’ve buried those thoughts and am holding my head up high.

Notes:

(**) When you are first diagnosed you can go through a honeymoon period where the pancreas secretes a very small amount of insulin for a little while. During this time you will give yourself less insulin.

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8 thoughts on “Type One Diabetes: My Story

  1. Hello Emma! Thank you so much for sharing your story with such honesty and bravery. To be so open is a sign of great strength…no doubt a character trait you have developed over these past 10 years. I have a friend here (Australia) who was diagnosed with type 1D at a later age. She writes a blog, yogafordiabetesblog.com. You may find it interesting.
    Wishing you all the best — and thank you for great paleo recipes and ideas!!

  2. Thank you for sharing your story. My grandmother had type 2 diabetes and my uncle has type 1, so it’s always in the back of my mind that I need to be careful what I eat and how active I am. What you have shared really affirms that! And it’s very interesting to hear how the paleo diet has helped you with your diabetes and sort of shocking about oats having such an affect on your blood sugar level, especially as I eat oats every morning for breakfast!

    • Dear Corin, thank you so much for commenting. It’s certainly one of those things that a lot of people think will never affect them. You already seem very clued up on it all and aware so I am sure you will be absolutely fine! I know some diabetics who aren’t affected by oats, but for me they just don’t work! Lots of trial and error and a constant learning curve! Thank you again, Emma x x

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