Gemma's Story

This blog post will be slightly different, and incredibly heartwarming which will be a first for me since I'm all about the silliness. Recently the UK celebrated Diabetes week and I realized that I didn't actually know what that's like on a personal level. Members of my family had it, and that's all the connection I had, but I never truly made any form of effort to understand what it would be like to be living with Diabetes. Of course, we are taught the medical side of things in our classrooms but, does that help us connect to our patients? Truly, ask yourself, what would it be like to be in a diabetics shoes.

Therefore, I asked Gemma (OKAY I pestered her, let me live) to write her experiences down for me and for the public so we all have the opportunity for a better understanding and WOW, let me tell you, when I read her email, I was in tears. Her story covers everything from happiness, to sadness, to confusion and finally acceptance. It's the most wonderfully insightful story I've got to share and I'm BEYOND grateful Gemma said yes! After reading her story I became overly protective (which is weird so, don't worry, I won't act on it but my inner lion is pacing!)

Here is Gemma's story:

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"This month marked another bittersweet year for my diabetes and me. As always, its been a year full of highs and lows…no pun intended! Its been 8 years since I was diagnosed with Type 1 Diabetes at the age of 25. I was a professional cruise ship dancer at the time and have no previous history in my family. I feel this is important to note as adult diagnosed Type 1’s are a lot more common today than you might expect.

I know what you’re thinking…. Gemma, how are you celebrating this anniversary? Well, Id like to say I’ve booked a week away to some tropical paradise. Unfortunately, student finances, as well as Covid-19……oh and the fact that I don’t get a break from my diabetes all equally factor into the reasons why I haven’t done this…. And why today is just another day with Type 1 Diabetes.

I take Insulin daily to manage my Diabetes and there is so far no cure for Type 1 Diabetes. I take long acting insulin twice a day as well as fast acting insulin throughout the day with food.

My diagnosis was far from simple. As you will see I didn’t really fit into your ‘typical diabetic’ portfolio. I was originally diagnosed in Miami, Florida when I was dancing over there on a cruise ship. I started to become very ill and suffered from disabling vertigo attacks (side note – I have since been diagnosed with Meniere’s Disease) and went through weeks of different tests and treatment (including steroids for an infection they thought I had in my ear). Unbeknownst to me I was showing all the symptoms of high blood sugars. Thirst, ravenous hunger, constant trips to the toilet, and after being put on steroids, my vision started to go. My eyes were so bad, everything became blurry and I struggled to navigate myself about. I was also suffering from my second episode of thrush at this time.

They treated the thrush and got me booked in to see an eye doctor about my blurry vision. When I saw her, the first thing she asked me was if there were any other symptoms I had been experiencing. I told her and she asked, ‘Has anyone checked your blood sugars?!’. She was shocked when I told her they hadn’t!

Skip forward to back in the doctors that day where they finally took my blood sugars. I was quickly sent straight to Miami hospital where they started injecting me with insulin (after leaving me without any water, in a side room for about 3 hours, but that’s not important right now). I believe my sugar levels were around 32mmol/l. I was in hospital for around 5 days before they released me. At this point 2 different doctors had told me 2 different things. 1 of them told me I was type 1, and the other told me I was either Type 2 or not diabetic at all. I even heard them arguing outside my room at one stage which was the point I just broke down into tears as it seemed no one knew what to do with me. I was so ill I was lucky that my mum had flown to Miami to be with me (Number 1 mum!) She told me I was confused most of the time and was regularly repeating myself, and so if she wasn’t there to take in the information for me I would of let them take my kidney and not batted an eyelid I was so mentally fuzzy (this, again, was caused by the high blood sugars).

In the weeks and months that followed I went through a complete learning curve. It was (and always had been) stressful to manage. A lot of people have a phobia of needles, and I was no exception. Although the first time I injected I didn’t even hesitate. I knew it needed to be done and there really was no point making a song and dance of it. It really is a case of……inject or you will die! Sounds dramatic but it really is that serious.

When I came back home to the UK, I went through what they call a ‘honeymoon’ period when I lived in Manchester. Because my immune system hadn’t yet destroyed all my insulin producing beta cells within the Pancreas, for a while it seemed to be behaving and acting almost normally. Well, just like all honeymoons they must come to an end and a few months later my symptoms started to return. Hunger, thirst, exhaustion, constant toilet breaks. I eventually went to the doctor in Manchester who tested my urine for ketones. He proceeded to tell me I had +++Ketones in my urine. This was dangerous and I should have been sent straight to hospital! I could have developed ketoacidosis, a dangerous state that could have ended in a coma. Instead they were confused, as I didn’t fit the stereotypical Type 2 (basically I wasn’t overweight) and Type 1 was ‘normally’ diagnosed in childhood. The ‘diabetic specialist’ doctor ended up putting me on metformin tablets (regularly used for Type 2’s) and sent me home!

Well, 3 days later I ended up being held up, unable to walk unassisted in to the A&E department at Leicester Royal (Leicester being my home city). My sugar levels were at 36mmol/l. I was given the correct care and insulin and was discharged the next morning. I cannot fault the specialists at Leicester Royal!

Having Type 1 Diabetes has completely changed my life in so many ways. There are so many different factors that can affect your blood sugars, and so no 2 days are the same. One day can be fantastic and your levels are in range…but then others can be all over the place, and most of the time the reasons are a mystery! You just have to go with it and try the best you can.

It has made me more aware of my health in general, especially diet wise. As I must constantly assess food and drink and figure out how it will affect my blood sugars, I have become so much more aware of what I’m putting in my body, and how important exercise is. Exercise has become pivotal in feeling healthy and well and is such a big part of my life.

I used to worry about injecting in public. People do stare, and (although I’ve never experienced this), people are known to make comments…. some of them not very nice! But my closest friends are used to me testing and injecting now, and a lot of them ask questions which I love! They can’t understand fully, but Its nice that they are interested and curious. My nearest and dearest know what to do in an emergency should it ever arise, and I’m not ashamed to inject in front of anyone anymore.

When you first get diagnosed you are told to take a certain amount of insulin at certain times of the day. You would probably agree this doesn’t work well with most people’s lives! And it wasn’t until 4 years ago my amazing Diabetic nurse at Hinckley hospital mentioned to me the DAPHNE course. DAPHNE is Dose Adjustment for Normal Eating. The course is 5 full days of education from experienced Diabetic educators who walk you through the art of carb counting! So, I bet most of you just look at a plate of food and go…. yum, I cannot wait to eat that! When I look at a plate of food I must try and as accurately as possible calculate how many carbs are on that plate, and so how many units of insulin I need to inject. Let’s say there are some chips and I estimate they hold around 50g worth of carbs. My ratio of carbs per unit of insulin are 1:1 so for every 10g of carbohydrates, I inject 1 unit of insulin (generally speaking). This is what DAPHNE taught me to do, as well as coping with stress and how it affects your sugars, exercise, the type of carbohydrates eaten, and the proteins/fats eaten alongside it……these all influence how your blood sugars change.

To the public I would like to ask them to be kind to others. If you see someone injecting and you don’t like it, please just look away. Also don’t jump to conclusions that they are disgusting junkies (some of my Type 1 friends have been told this!). For a start, I’m pretty positive recreational drugs dont come in prefilled pens! I am also sure that injecting in a public bathroom is a lot more unhygienic than sitting at the table of a restaurant.

I’d also like to say…. yes, I can eat that slab of cake if I so wish! There is nothing I cannot eat. Yes, my Diabetes is very different to your grandad’s diabetes. And no, I cannot cure my diabetes through diet or shots of cinnamon. But please DO ask questions if your curious. I would love if people do and the more we can educate people, the more we can raise awareness for Type 1 Diabetes, especially those diagnosed as Adults. Because as we now know it could affect anyone at any age.

For adults newly diagnosed with Type 1, I would advise you are put under the care of your local endocrinologist and Diabetic nurse straight away. My experience with general practice has not been great and, also asking other Type 1’s, a lot of false and misleading/uneducated information is often given out at this level which is why I advise you to see a specialist. I believe this is because there is a lack of education given to doctors/nurses around Type 1 in comparison to Type 2. For this reason, the lines are often blurred!

I would also recommend getting your diabetic nurse to book you onto the DAPHNE course. I want to try and campaign for this to be offered as standard to all newly diagnosed Type 1 adults! I wish I had been offered this when I was diagnosed it would have saved a lot of stress and confusion, and gave me a lot more confidence and hope during such a life altering time.

And lastly look for social media support groups. No question on these groups are too silly or irrelevant and there are always so many people who will help you out, give you tips or just let you know that you got this and you are far from alone!

Thanks to Ektaa for giving me this platform to tell some of my story! I hope to educate people on what its like being Type 1 Diabetic and how to spot the signs and symptoms. My door is always open as they say, so id be glad to take any questions or just have a chat! I am also just finishing up the 1st year of BSc Podiatry at Northampton University which I am loving!"