Thursday, 29 August 2019

The Burden of Seizures

Hi everyone! It has been almost 3 months since I have blogged!

This summer was my last summer as a student, and possibly the only time that I will get an almost 4 month break again, so I tried to fill it with volunteering. Some of the things I've been up to:

  • Helping to organise the World Community Development Conference 2019
  • Volunteering on a youth work 3 week summer programme
  • Spending 3 weeks volunteering in the Corrymeela Community in Northern Ireland
  • Organising the Young, Fun and Type 1 Conference

And through it all, I had Type 1 Diabetes and it's daily complications on my mind. Recently, I’ve been thinking about how complicated my life can be, and in particular, seizures.


I have been diagnosed with Type 1 Diabetes for over 6 years, and I have been diagnosed with Epilepsy for around 3 years. Individually, both conditions are hard to live with, however combined, Type 1 Diabetes and Epilepsy interact with each other and make them both harder to live with. I occasionally have seizures when I’m exhausted or extremely stressed, but my main trigger is low blood sugar (also known as a hypo). If you live with Type 1 Diabetes, you know that sometimes it can be extremely difficult  to prevent low blood sugar, which makes my life difficult.

Normally what happens when I have a seizure is that I feel a hypo approaching, I test and treat the hypo, but it always seems to be too late, the sugar doesn’t work in my body fast enough to bring my blood sugar up before I have a seizure. This does not stop me from attempting to eat my body weight in sugar because of fear.

I live in a constant state of fear.

If I have a seizure, my day/week is completely ruined. If I have a seizure in public, I burden the people around me. They might have to call an ambulance or stay with me to make sure I’m alright. My sister told me that seeing me having a seizure, being scared about what was going on whilst having to try and make sure I was alright, was one of the scariest moments in her life. She treats me as if I might brake now, getting scared when she sees me even test my blood sugar or check my insulin pump. I don’t want to put anyone through that experience.

How my seizures work: I have seizures called Tonic Clonic (or Grand Mal) seizures, which means my body becomes rigid and there is uncontrolled shaking for around 1-3 minutes. In the 30 minutes that follow this, I am in and out of consciousness, and I am not normally aware of my surroundings. One characteristic that I ALWAYS have after a seizure is biting my tongue. In the hours that follow, I feel symptoms like headaches, confusion and extreme fatigue. All of my muscles ache, and it feels as if I’ve done extreme exercise. My limbs are heavy, as if they are made of lead. I have extreme brain fog, and it’s hard to form a coherent thought to have a conversation, let alone do anything that requires more brain power. These symptoms only seem to last about 24 hours, apart from the swelling in my tongue, which lasts about 3 days. I normally have a lisp and I find it extremely difficult to eat.

Thankfully, I’ve only banged my head once when having a seizure, when I hit my forehead on the pavement and had to have it glued shut, however everything was fine. It is scary to hear stories of people who have seizures in the shower or when they are out walking, they hit their head, and die. This is petrifying, one of my biggest fears.

To control my epilepsy, I take a drug called Keppra, which hasn’t fully stopped my seizures due to the unpredictability of Type 1 Diabetes, but I think it has prevented some. For my peace of mind, and to try and prevent my blood sugar going low in the first place, I wear a CGM (Continuous Glucose Monitor). This takes a reading of my interstitial Fluid in my body, and sends a Bluetooth signal to my insulin pump. My insulin pump then alarms when my blood sugar is dropping/approaching low or actually low, and it automatically suspends the insulin flow going into my body. This means that if I am by myself and something happens, at least I’m not getting anymore insulin to make my blood sugar lower. This is an amazing peace of tech, which  helps immensely with my peace of mind, and helps me feel I can be more independent.

I am aware that others also go through this experience, that I am not alone. I don’t have seizures often, but when I have them they are quite traumatic, which is why I wanted to share, because if I feel this way, others may also feel this way. Remember to always be empathetic towards others, because you never know what is going on in their lives.

I would also encourage people to ask questions when you don’t understand/are curious about someone’s health. I am very transparent about my health, and the majority of people just want those around them to understand what they are going through.

Until next time,

Alyssa x



Wednesday, 8 May 2019

The Reality of Insulin Access


When someone lives with Type 1 Diabetes, they are dependent on insulin. Not having insulin can very quickly become deadly.

A vial and a pen-fill of insulin.
I'll give the example of insulin pumps. Insulin pumps can be unplugged for up to an hour. If you leave it off any longer, in the hours following not having any insulin, blood sugar will start to rise. The lack of insulin in the body causes something called “ketones”. Ketones are acidic molecules and having too many ketones in the body will become toxic. All of this leads to something called Diabetes Ketoacidosis (DKA), which usually develops over 24 hours. 

The following is what happens to the body when no insulin is present, leading to DKA:

Stage 1 – The lack of insulin means my blood sugar will start to rise. I start to have low energy, feel thirsty and need the urinate more often.
Stage 2 – The body starts to produce ketones in the blood stream due to lack of insulin (ketosis). I feel thirstier and need to urinate more, fatigued and slightly nauseous.
Stage 3 – Ketones end up in urine (ketonuria). I feel more significantly thirsty and fatigues, very nauseous and have body aches and headaches.
Stage 4 – Diabetic Ketoacidosis sets in. I start vomiting, becoming confused, dizzy, start taking deep/laboured breaths and have a “fruity” smell to my breath. I am very ill.
Stage 5 – I fall into a coma due to severe Diabetic Ketoacidosis.
Stage 6 – Death.

I am very lucky to live in a country that provides me with live-saving insulin free of charge. Not having insulin is extremely deadly, yet the reality is that some people in the world living with Type 1 Diabetes have very little access due to the cost of it. In countries such as Brazil, Ghana, India and Zambia, the cost of living with diabetes is over 80% of their average income, meaning it is near impossible for people with type 1 diabetes to afford to manage their condition.

In the Universal Declaration of Human Rights [Article 25], it says “Everyone has the right to a standard of living adequate for the health and well-being of himself and his family, including food, clothing, housing and medical care”. Health is a HUMAN RIGHT, and yet people all over the world are being denied that right.

Insulin was first used to treat a person with insulin in 1922, and the patent was sold for £1 to ensure that it was accessible to all. There are 3 main insulin producers, which are Eli Lilly, Novo Nordisk and Sanofi, who dominate over 90% of the insulin market in the UK, and since the 1990s, the cost of insulin has increased by over 1200% whilst under the rein of these companies. This is a massive problem, because unlike people living in the UK who have the NHS (National Health Service), individuals must get their own health coverage. Stats show in the US that 8.8% of Americans are uninsured and 47% have high deductible plans, that 1 in 4 people living with diabetes have rationed their insulin, and many people in the US have died due to lack of insulin.

It is ABSOLUTELY ATROSIOUS that in a first world country such as the US, people are still dying from lack of insulin, with is supposedly a fundamental human right.
There are a few charities, such as T1International, that are campaigning against this health discrepancy, trying to ensure that everyone with type 1 diabetes has access to a life-saving drug that they are dependent on. T1International run a campaign called #insulin4all with a charity called The Pendsey Trust, which unites the diabetes community together to fight for access to diabetes medicine and technology.


I’m writing this blog to show the stark reality of living with type 1 diabetes. It is an expensive condition to manage, and although I am lucky enough to live in Scotland where my medical expenses are covered, so many people are not. We need to band together and continue to fight and raise awareness of this issue!


Until Next Time,

Alyssa x


Wednesday, 10 April 2019

Balancing Solo Travel with T1D - Caleb Britton


When I was in London in March, I sat down in King's Cross Station and pulled out my insulin pump to give myself some insulin, and I heard someone utter next to me "We're pump twins!". Sitting next to me was Caleb Britton: Caleb is a sophomore Kinesiology major at Gordon College in Wenham, MA, and is studying to be an Occupational Therapist. He loves music, writing, startup culture, and lucky for me, travel! We both happened to be in London at the same time, and Caleb bumped into me whilst travelling around Europe! I thought his expertise should be shared, I especially love his 10 handy travelling tips. Enjoy! - Alyssa x



I’d wanted to visit Europe since forever. Throughout high school and the beginning of college, I would keep bringing it up with my family – could we, by any chance, do a Europe trip this year? When the answer was still “probably not” last fall, I decided to take matters into my own hands – I was going to Europe all by myself.
              I ran through several versions of an itinerary, before finally settling on an eleven-day mad dash during my college’s Spring Break. In those eleven days, I would be visiting eight cities – London, Oxford, Paris, Barcelona, York, Edinburgh, Dublin, and Reykjavik, in that order – with visits stretching from three days in London to twenty hours in Paris to three hours in York. One frenzy of ticket and hostel booking later, I was on my way to Europe on an overnight Norwegian Airways flight.


Cliché wing shot!

I tried to pack as much as I could into those eleven days. Every morning I would wake up early in my hostel or AirBnB, grab a hearty breakfast at a local restaurant or cafĂ©, and walk or take public transportation into the city. Even though I gave unrealistically small amounts of time to cities like Paris (20 hours) or Barcelona (26 hours), I still managed to visit all sorts of iconic attractions and landmarks – such as Buckingham Palace, Magdalene College, Notre Dame, La Sagrada Familia, the British Railway Museum, Edinburgh’s Royal Mile, and Trinity College. I enjoyed a beautiful night view of Paris from the Eiffel tower where I ran into a man proposing to his girlfriend. I lost myself in Barcelona’s Gothic Quarter, where people crammed themselves into tiny tapas bars to enjoy a drink, some delicious bites, and good company. And when my eleven-day trip turned into twelve and I was (voluntarily) stuck in Iceland due to the now-defunct WOW Air overbooking my flight, I enjoyed the long, northern sunset as I walked down to the beach in Reykjavik.

I now realize this picture is equal parts British and American…

Magdalene College and local Oxford wildlife

Paris by night!


La Sagrada Familia is simply other-worldly.

Carlton Hill, Edinburgh – complete with my despicable attempt at a beard.

Abandoned church-ish thing in Howth, Ireland

Despite these wonderful perks, though, a solo trip like this is a daunting step into the wider world for anyone, and difficulties are bound to present themselves. Traveling solo can sometimes be accompanied by losing your wallet or passport, draining your phone battery, eating something strange that disagrees with you, or getting lost in a city where you know nobody. But once you throw Type 1 Diabetes into the mix, it adds a whole other element of difficulty. As readers of Alyssa’s blog probably know, Type 1 is a constant battle between high and low blood sugars, either of which can kill you or cause serious harm if left unchecked. In a single day at my Massachusetts college, my blood sugar can fluctuate between half of and two times the amount it’s supposed to be. That’s normal – it’s not perfect, but it’s still pretty easy to balance with experience and routine. When you travel at a breakneck pace through five countries in twelve days, though, that balance is a lot harder to maintain.
Here’s the deal: I love trying new foods, and I wanted to try as many as possible during my trip: the proper English fry-up breakfast, French crepes and baguettes, Catalonian tapas and pintxos, and Haggis in Alyssa’s home turf of Scotland (which, contrary to popular American belief, is actually pretty good). Unfortunately, if my blood sugar was high when it came time to eat, my options were pretty limited – unless, of course, I wanted to spike my blood sugar even higher than it already was, which is never a good idea. Furthermore, all of that food had carbs, and I had no idea how many.

The British love their protein…

…while the French seem to prefer carbs.

And if this wasn’t enough mental math, there’s one thing that sets European cities apart from American ones, other than perhaps New York: Everything is incredibly walkable. Walking means exercise, and for T1s like myself, exercise makes short-acting insulin more potent. If I exercise enough with enough insulin, my blood sugar goes low, and then even walking through a city can put me at risk for a worse low or even passing out. In short, I had to give myself enough insulin to safely eat my next exotic meal, but not so much that I wouldn’t be able to walk around.
As an example, my blood sugar was going low while walking around Oxford with my friend, who was studying abroad there. Because of that, when we got Cream Tea in the middle of the afternoon, I deliberately gave myself a smaller-than-normal bolus for the scones and clotted cream we ate. As it turned out, this bolus was much too small – even after another two hours of walking, my blood sugar was at 300 mg/dL (16.7 mmol/L) when it was time for us to have dinner in Lewis and Tolkien’s old haunt, the Eagle and Child. I still got a Cottage Pie anyway, because I needed food, but I was pretty sure this would spike my blood sugar even higher, so I gave a larger than normal bolus. Of course, by the time my train got back into London’s Marylebone Station that evening, my blood sugar was low again, and I ended up buying a banana and a cookie bar in the station before taking the Underground back to my hostel. Sadly, this sort of up-and-down game was typical throughout the whole trip.
Oxford was still totally worth it, though!

Then, of course, if something went horribly wrong, getting sent to the hospital in a foreign (to me) country could result in a bill equal to my entire travel budget. And if my bag full of insulin, pump supplies, backup pump supplies, strips, needles, swabs, glucagon, and glucose tablets got stolen, who knew what could have happened.
Thankfully, the worst didn’t happen. But I did have multiple low blood sugars pretty much every day, and half the time the only carbs I had to me were powdered orange glucose tables from CVS, an American chain convenience store. Other times, a well-timed smoothie or sweet treat from whatever shop or restaurant happened to be nearby me – my favorite pick-me-up was a chocolate chip baguette in Paris. My worse low by far was on the final night, in my hotel in Iceland, when I was at 50 mg/dl (2.8 mmol/L), my glucose tablets were running out, and the vending machine refused to accept the final ten kroner coin I needed to buy Pepsi (thankfully it ended up taking my debit card, which I probably should have tried first in retrospect, but I wasn’t exactly thinking clearly).
Don’t let any of that scare you, though, at least no more than is healthy. Going to Europe or any foreign-to-you country, even with Type 1 Diabetes, is absolutely worth it, so long as you understand the risks and have plans in place to minimize them. The challenges of travelling with a chronic illness are very real, but they are far outweighed by the places you see, the amazing foods you try, and the fascinating and diverse people you encounter. For me, this latter category included the Pumptastic Scot herself, whom I met in King’s Cross Station, right after discovering that, sadly, there is no barrier between platforms 9 and 10. Pity . . .I already bought my Hufflepuff scarf.

And thus my dreams were crushed.

If you, dear reader, are considering traveling abroad with T1D, especially solo, here are some friendly tips to help you on your journey.

1.      Always have backup. Bring twice as many supplies as you think you’ll need.
2.      Carry a wallet card explaining what to do if you have an extreme low blood sugar and can’t communicate.
3.      Upload a copy of your passport to the cloud, so that if it gets stolen you have access to it. This one goes for everyone, but access to an ID could be especially important for a diabetic in distress.
4.      Learn how to say things such as “I have diabetes” or “I have low blood sugar” in the language of the country you’re visiting. My next country is China, so this will be fun…
5.      If you’re staying in a hostel, inevitably you’re going to be digging through your stuff in the dark while other people are trying to sleep. As part of trying to only do this once, make sure you have a juice or soda ready to go next to your bed.
6.      Temp basals are your friend. If you use a pump and you have a target blood sugar, try dropping cutting your basal entirely for half an hour or more while you’re walking from place to place.
7.       Troubleshoot, troubleshoot, troubleshoot. If you’re having consistent lows, drop your meal boluses, then drop them again the next time around. Keep doing this until things even out.
8.      Always be asking yourself, “What if I had a low right now?” Pack lots and lots and lots of energy bars and glucose tablets, even if you think they’re disgusting. As much as possible, buy up sodas, snacks, and juices, so that you’ll have them on you if you do indeed have a low blood sugar. When you budget for your trip, take this into account – I spent over $50 (over £38) on low blood sugar snacks during my trip.
9.      If you’re on a plane, even a low-cost airline like Norwegian, EasyJet, or Ryanair that nickel-and-dimes you for everything, and you have a low blood sugar, don’t be afraid to ask for free snacks and drinks if you have a low. This worked for me on Norwegian, when I had an overnight low on a transatlantic flight from Boston to London, and the flight attendant gave me free juice and cookies.
10.  Speaking of flying, once you get on the plane, gather everything you need to have on you during the flight – including glucose tablets and your meter – and stuff them into the seatback pocket in front of you. This way you won’t have to get up or dig around in a bag to find things should you have a low blood sugar.

Happy travels!

-          Caleb

“The world is a book, and those who do not travel read only a page.” – St. Augustine

Sunday, 3 March 2019

The Problem with Mental Health Campaigning

One day I was working, and I was having a bad mental health day. All I wanted to do was to seclude myself, sit in a corner and cry, but I had to continue on with my day as if nothing was wrong, so I decided to listen to a podcast called “Happy Place” – presented by Fearne Cotton (available on Spotify), because I felt like I needed to listen to some positive, upbeat messages. I stumbled across an episode of this podcast in which Fearne Cotton interviewed Stephen Fry, who is the president of the mental health charity “Mind”. I thought it was such a coincidence that the exact thing I was struggling with was being discussed so openly, when mental health is often something that I try so hard to hide.

As I was listening to the podcast, Stephen Fry made such a good point about mental health awareness campaigning. There are 2 points that need to be made when doing the campaigning, otherwise it can do more harm than good:

  1.  “Mental Health is dangerous, often life-threatening and is a shockingly awful experience for some”, but…
  2. “It is so possible to lead a fulfilled, happy, connected, loving, beloved life in which you are a full proper member of society and you are not owned by your disorder”


This really struck a chord for me. I often talk openly about mental health online, when I have a screen to protect me and allow me to articulate my feelings without getting upset, but in person, seldom do I talk about my struggles with mental health. The main reason for this is the second point, I don’t want anyone to underestimate my abilities, coddle me or constantly question whether I am up to the job.

Stephen Fry, later in the podcast, talks about how someone with a physical illness (e.g. Type 1 Diabetes or Asthma) is more able to admit when they are unwell because people are more likely to understand that it isn’t their fault, and this is so true for me. I find it hard to admit when I feel unwell with Type 1 Diabetes, but when I do admit defeat, I can explain why. When I am struggling with my mental health, and I can’t explain to people a logical reason why, I find it difficult to tell people when I need to step back. I don’t want to be treated differently.

In the podcast, Stephen Fry eluded to the fact that “We live in a country that often think that passion and emotion are an embarrassment”, and I cannot agree to that more. The act of showing and sharing emotion can be so powerful, it shows a vulnerability that I truly believe people respect. I want to be able to open up fully and show people my full emotions, but I end up bottling it up, hiding it and often making it worse, and that may partly be because I *am* embarrassed to show weakness.


I want everyone to understand mental health. I want everyone to know that 1 in 4 people will experience mental health issues at some point in a year, and it can be very dangerous. I also want people to understand that because someone admits weakness, it doesn't mean they should be treated any differently in the future!

I hope that in the future, I can be as open and honest about my mental health as I am about my physical health. I aim to be open, transparent and confident about all aspects of my life, as I am only human after all, but for now I will acknowledge the need to educate about mental health and also know that because someone struggles with mental health, doesn't mean they can't live a full life.

Until Next Time,

Alyssa x


http://www.officialfearnecotton.com/news/2018/2/26/happy-place-podcast - The home of Happy Place podcast

https://www.mind.org.uk/ - "Mind" mental health charity


Wednesday, 6 February 2019

A New Adventure - Corrymeela!

2019 brings a completely new adventure for me, something I have never done before!

Last semester I managed to gain much better control of my Type 1 Diabetes (but definitely not perfect!), and I felt so much better for that. One of the things I want to do when going away to Northern Ireland (where my University placement is) can help me redefine what living with Type 1 Diabetes means to me. In the past year I have quite a negative outlook on it, it has held me back from doing thing, and although it has given me opportunities, I have resented it. This can be a chance to gain a positive outlook on the strength it has given me and the opportunities. I have already noticed that I use the fact that I live with Type 1 Diabetes as conversation starter, a way to connect with people who have been through similar experiences, and that in itself is a strength which I wouldn't have gained without Type 1 Diabetes.

I'm on a placement at an organisation called "Corrymeela", which is based on the North coast of Northern Ireland. I live, eat and work on site, interact with all the groups that come through, help out wherever I can, but one of the main things I am using this experience for is to figure out how to be myself. I am living in a house with around 20 volunteers from all different cultures (There are volunteers from America, Scotland, England, Northern Ireland, Canada, Germany, South Korea currently!) and this will be a test to see whether I can prioritise living with so many other people and taking care of myself.
In front of the beautiful scenery at Corrymeela
Me on the Giants Causeway

Corrymeela brands themselves as a centre for peace and reconciliation, and it has 4 areas of work, which are Sectarianism, Marginalisation, Legacy of Conflict and Public Theology. The groups that come through include school groups, international groups, people who want to learn about the conflict in Ireland and how it relates to them e.g. South Korea, and many many more. The work that Corrymeela do varies so much, but all groups leave with a legacy. They use the phrase "Corrymeela begins when you leave" because Corrymeela sows the seeds for lifelong learning. After being here for less than a month, I have already learned so much, both from the groups and the people volunteers and staff at Corrymeela. I often feel naive, because I didn't know the extent of the problems that Northern Ireland faced and still face, and so it has reminded me that lifelong learning is so important, and that we should never judge anyone else's lives unless we know all the facts.

Some fellow volunteers in front of a mural in Belfast

That being said, being at Corrymeela has been difficult because all the food is served cafeteria style. I give my insulin dose based on how many carbohydrates I eat, and this usually means I can look at the nutritional information on a food packet, or weigh the food I eat and figure it out. I don't have any of that information here, and so I have to guess how much carbohydrates I'm eating. I have gotten it very wrong so far! This means that often my blood sugar is high, making me tired and not be able to concentrate properly, which in turn means that I am not as productive as I hope to be. I think this will be an ongoing challenge for my remaining time at Corrymeela.

Having a day off in the pub
I want to use Corrymeela as a chance to learn skills of self-care, to help with my ongoing mental health. I think the location itself helps massively, just looking outside the window at the outstanding views is so peaceful. Corrymeela also holds something called "Silence in the Croi" every morning, where volunteers living on site can go and reflect on their day, or read a book, or journal, and I have found this an amazing way to start my day. Just sitting there, not having to think about anything and just being present in that moment is such a good feeling and sets my days up perfectly.

Being here, I have already learnt so much, but the main thing I have learned so far is how to be part of a community. Being able to lean on others and have them lean on you is an incredible feeling, and something which I have never truly felt before. If that is all I gain from being at Corrymeela (and I'm sure it won't be!), my time will have been worth it.

I'm looking forward to seeing what else Corrymeela has in store for me and how much I can learn in the short time I am here. I want to be a tourist and learn the culture that Northern Ireland has. I can already tell it's an experience I will cherish.

Until next time,

Alyssa x

Volunteer dream team

Friday, 30 November 2018

Common Misconceptions about Type 1 Diabetes

As with everything, there are so many misconceptions about type 1 diabetes, mostly made worse by the stigma the media causes. Here are some questions and comments someone living with type 1 diabetes can get:

At least its not cancer
Cancer and Type 1 Diabetes are not comparable at all, and by saying this you are making light of how hard type 1 diabetes can be to live with!

Invisible Disability - Someone living with Type 1 Diabetes
looks the same as everyone else!

Wow, you must have ate too much sugar as a kid!
Type 1 Diabetes is an autoimmune disease, which means the immune system essentially attacks itself, it has nothing to do with eating too much sugar or being overweight.

You can reverse diabetes if you lose weight, can't you?
This is a confusion between type 1 and type 2 diabetes. With type 2 diabetes, it can *sometimes* be put into remission through dieting, but with type 1 diabetes you are insulin dependant for life, as the cells in your pancreas don't work anymore.

I would rather die than inject myself everyday!
This one is quite insulting actually. If I didn't replace the insulin my body doesn't make, it is a death sentence. You get used to it, because you don't have another choice!

Can you catch type 1 diabetes from someone who already has it?
No! Diabetes isn't contagious, it is genetic.

Should you be eating or drinking that because of your diabetes?
People with type 1 diabetes can eat anything, they just have to know how many carbohydrates are in the food, give insulin accordingly and know how each food affects their own body. We are recommended to eat the same healthy diet as everyone else!


Someone living with type 1 diabetes can eat and
drink anything (within reason!)
Basically, Type 1 Diabetes should not hold you back. It is hard to live with, it requires constant control, but you can live life to the full nevertheless. Someone with type 1 diabetes will be dependant on insulin to live for the rest of their lives, it's not something you can grow out of.

Asking questions is a brilliant way to get to know what someone goes through, so please keep them coming, but also be sensitive about it!

Until Next Time,

Alyssa x

Tuesday, 20 November 2018

Natalie Balmain - More Than Just a Type

I asked my friend, 'Natalie Balmain', who is founder of Type 1 Clothing, to write a blog for me talking about her life as a whole, both positive and negative. When living with type 1 diabetes, it is easy to let it take over , and Natalie talks about how living with type 1 diabetes has played a part in hers. Please read it until the end! - Alyssa


"I've been thinking of how to start this blog for a long time. I don't generally find it difficult to write about my opinions or experiences, but I do find it hard to be vulnerable.

You see, I have a lot to be vulnerable about. I've felt every hollow, stinging, shot-to-the-heart pain you can imagine, but because the foundation of my soul lies in loving everyone, (whether they be an old friend or someone I've just met on Facebook), I've never wanted anyone else to feel the pain I've felt. So, I never shared it.

When you watch my vlogs, or see me speak at an event, you'll see that my message is a positive one. My drive is to inspire others and make everyone around me happy. By nature, I'm a people person, and if I only achieve one thing in life it would be to help everyone else know that they can overcome anything, and live happy, fulfilling lives. Especially my type 1 family, because in all honesty, they are the some of the truest friends I've ever had.

So it upset me recently to hear stories from some of the young people I seek to inspire, saying that either friends, family, or they themselves, have used me as an example to demonstrate that 'controlling' type 1 diabetes should be easy, and if I can manage it so well, why can't they? And my heart sank. I've always sought to uplift people with the positives, but in that moment, I realised that the negatives are just as important. So, I decided that I'm going to share mine.

Firstly, I would like to make it very clear that controlling type 1 diabetes is NOT easy. My favourite meme on the subject describes it as "Walking a tightrope. Except you're on fire, the tightrope is on fire, and everything is on fire". Yup, pretty much sums it up. Over my 12 year tenure as a T1D, the most part was spent with an average HbA1C of 12. That's pretty horrific. I've had touches of neuropathy, signs of kidney damage, and a blue-light trip to hospital in 2017 in severe DKA with a blood PH of 7.0 (when I later saw the healthy blood PH range chart, 7.0 was labelled as 'Death').
Its only in the last year and a bit, and only because I've been fortunate enough to have access to technology like my Dexcom CGM and an insulin pump that I've been able to bring my HbA1C down from 12 to 8. And even that brought on haemorrhages in my retinas. It's still not perfect, but I'm getting there. Perhaps I'll even manage to avoid some complications, despite being told at diagnosis that complications were 'inevitable'.

So, maybe some of you reading this are not type 1 diabetics, and maybe you need an explanation as to why I'm still struggling after all these years to 'manage' my condition. (I can't tell you the number of times I've wanted to scream in someone's face when I've told them I'm a type 1 and they have responded with 'but it's manageable isn't it?')

Well the dirty little secret is, none of us are JUST type 1 diabetics. We are human beings with the same real lives and stresses and emotions as any of you, AND we have type 1 diabetes on top of that. Perhaps if none of us worked, or cried, or danced, or ever had a heartbreak or lost a loved one; if we had no lives at all, then maybe we could all have perfect blood glucose levels all the time. But life isn't simple like that.

On top of the fact that everything we eat has a different effect on our levels (even the same food eaten at different times of day requires different doses); exercise, having your period, stress, excitement, heat and so many more things impact your blood glucose, and that's before we even factor in mental health and life.

Mental health is the biggie for me. You see, I suffered with depression even before my type 1 diagnosis. When I was 5 years old, I lost my Mum to cancer. I only found out recently from a cousin that I didn't speak for months after that happened- my brain had blocked all those early childhood years out. 

And maybe it was the fact that I didn't have my Mum around, that I was desperate to be loved. Whatever the reason, being desperate is a sure-fire way to NOT make friends. I remember being at primary school and hearing my child minder ring up other kids’ mum's to invite them round to play. I could only hear one side of the conversation, but it was always "Ahhh.. ok, never mind", as those kids' parents made excuses for their children who didn't want to play with me.

Over the course of my young adult life, I got into trouble a lot. I hung out with bad crowds just to feel part of something. When I got my diagnosis of type 1 diabetes, the guy I had been seeing for just a couple of months couldn’t cope with it (and my severe depression), but I guess he felt too much pity for me to break up with me, and so I stayed in a 7.5 year relationship with someone who cheated on me from the first day to last, hoovering up any shred of self-worth I might have had left. (I'd like to add at this point that I don't actually blame him, we were both young and my diagnosis and depression was too much for either of us to deal with well).

When I eventually found the strength to leave, after a period of living on my friend's sofa because I had no home and no job, I got a place by myself and let strangers party in my flat just, so I wasn't alone. I ended up being assaulted in my own house. Since then, I've kept myself to myself because being alone has seemed preferable by comparison.

Even writing this now, I feel an overwhelming urge to apologise to you all for burdening you with this. But perhaps if I lay all my cards out on the table, it might make it easier for you to understand why managing type 1 diabetes isn't just about finger pricking and injections.

You could probably understand why people who have gone through things like that might have mental health issues, or even feel suicidal. But let's put that into perspective: what if someone with those struggles ALSO had type 1 diabetes, and was responsible for keeping themselves alive every minute of every day? Could you understand why that person just might not always feel like it's worth the effort? Why do we try so hard to stay alive when life itself can be so tough?

Now I'm not suggesting for a minute that everyone has been through things as extreme as I have (although many may have dealt with worse), but every one of us has struggled at some point. We've all lost loved ones, dealt with heartbreak, been fired from jobs or fallen out with friends. We all have good days and bad ones too. And those struggles impact us emotionally, and in turn, affect our strength and our motivation to look after ourselves. How many of you have gotten drunk to cope with things? You know it's bad for you, but you still do it. Well, type 1 diabetics know that not being on top of our control is bad for us, but we are only as human as you are.

So perhaps next time you judge a type 1 for not having good control, remember that berating us is only adding to the problem. Child or adult, all anyone in this world really needs is love, and support.

Love Natalie"