A high wire balancing act
Reflecting on my Type 1 diabetic journey from diagnosis to today.
November is Diabetes Awareness month and as World Diabetes Day is soon approaching (November 14th) I wanted to share my journey from being diagnosed as type 1 diabetic to the present day.
It’s a deeply personal piece ( I felt so nervous when I clicked publish) but I thought it was important to write about my experience to shine a light on this condition and to also raise awareness. As often when you have an invisible illness creating visibility is key.
I also feel eight years on since my diagnosis my level of acceptance of my condition has plateaued. I feel ready to write about it as I feel I have gained perspective on the experience so far.
Although there are many forms of diabetes I am focusing on this type as it is personal to me. As sometimes I feel the different types of diabetes are misunderstood as each type and journey is different for everyone.
According to Diabetes UK 5.6 million people in the UK have some form of diabetes. Within this statistic 8%1 of people in the UK have Type 1 diabetes2 and they describe it as a serious and lifelong condition. Whenever I read the words ‘serious and lifelong condition’ I always pause and think even after all these years surely that description doesn’t include me, but it does. I tick the box and will forever be linked to these words and belong in the chronic illness group.
Nearly eight years ago in late 2015 my world turned upside down. I had not long returned from a four month travel trip, and I was ill, underweight and had no energy. Little did I know that a trip to the doctors would change my life forever, and I was about to become a part of the aforementioned statistic.
When I was diagnosed I was shocked, emotional and it took me by surprise. I had the symptoms but never connected the dots, diabetes was not prevalent in my family and I wrongly assumed that type 1 diabetes was only something you had from birth or that it appeared during childhood. As I was 26 years old it didn’t seem possible that this was the answer behind my ill health.
I was told the only other way I would have found out was as I was dangerously veering into the territory of DKA3 I would have ended up going into a diabetic coma, resulting in a hospital emission where I would have probably been diagnosed after having a battery of tests. I left the doctors in shock, with a plastic bag of medication and with little to no idea on how I was going to deal with this revelation and life changing diagnosis.
The first few months of 2016 were a blur, I was trying to figure it out and work out how on earth I was going to manage this. I went through the 5 stages of grief as I had felt like I had lost the ‘normal’ life I had known and I experienced:
Anger - why the F*CK had this happened to me?
Denial - Nope, its not happening!
Bargaining - surely this can’t be right, do some more tests, It must be something else?
Depression - how on earth am I going to deal with this?!?!?!?!
Acceptance- although this took a long time to appear
It was an uphill battle during the first few years. Trying to figure out how to live my life and work out how everyday activities and situations affected my condition. I likened it to having two full time jobs, but this wasn’t just another nine to five as it was a twenty four hour occupation.
I learnt that it can affected by anything ( which also boggled my mind in the beginning), weather -extreme hot or cold, illness, hormones, stress, exercise and other medications. It was a minefield trying to figure out what to eat and inject. The frustration and fear I felt in the beginning was immense. But then I realised how sick I actually was, as taking insulin slowly made me feel better and I began to build myself back up again. It amazed me how much I had put up with and how much my body had to cope with before I was on medication. I also became acutely aware that I was extremely lucky and privileged because my medication is available via the NHS. To this day it blows my mind to think that there are people all over the world who have to pay for their insulin to keep them alive.
Acceptance of my condition certainly took its time to appear, but when I realised being type 1 wasn’t going to go away I decided I needed to get on board and try and figure it out. I slowly took each day as it came, it wasn’t easy and it felt like I was on a steep mountainous learning curve. Luckily I had access to diabetes nurses who helped me figure it out over time and who continue to be my guiding lights and sounding board to this day.
Although I try to keep my blood glucose numbers on an even kiln you never know what can happen day to day. The possibility of experiencing a Hypo4 or Hyper5 is also something else I have to contend with on a regular basis.
When a Hypo occurs, you feel like you are drained of all energy. I feel like I am underwater, and I became sweaty and shaky. It can vary for people, but I also feel spaced out as well. Once I take my 15–20 grams of fast acting carbs (often in the shape of a fizzy drink) I have to wait 15 minutes for it to hit my system. I feel like I am re-animating during this process, like I am coming back to life. Your awareness of this occurring can also vary, so it can sometimes be difficult to realise it is happening, and it can catch you off guard.
Hyper’s are a completely different beast, these occur your blood glucose levels are too high. When I experience these I feel sick, I also feel like I’m on high alert and become very irritable. You often have to do correction doses or really monitor what your numbers, types of food and insulin are doing to combat these.
Even when you feel like you have control over your blood glucose numbers, there is no guarantee that you can prevent either of these from happening. It really is a case of trial and error and figuring out how best you can treat both of these scenarios when they occur.
Often I find preparation is key with this condition, I always carry a small fizzy drink, a chocolate bar, medication, needles, wear a medical alert bracelet and have my glucose monitoring equipment with me where ever I go.
I have to plan how many items I need with me to make sure I am covered in case something happens. I carry more needles than I require as sometimes plans can change, needles don’t always go in (my stomach is dotted with marks to remind me of failed injection sites) and when I go away it becomes a highly organised operation. As I need to make sure I have enough supplies with me for the duration and to cover me if any delays happen. The fear of losing or running out of supplies or insulin going bad is real.
Food and drink is also something I’ve had to re-examine as anything with a carbohydrate in it has to be taken into consideration when working out how much insulin to take. There are some meals now that I can look at and think ok I know how much insulin I need to take and others like pizza where it gets me every time as it always seems to make my number go pretty high.
If I go out for any meal, I never inject myself until the plate of food is in-front of me and looks ok. It’s also a bit of a juggling act working out what to take insulin wise, as not all restaurants have nutritional information available. It also frustrates me when food is not labelled properly to give the amount of carbs in the item's actual weight, as often it describes the nutritional information as per 100g. So I have to employ a bit of maths and hope for the best, as I work out the amount of insulin I have to take based on the amount of carbs in a meal.
If I am in a new social situation, it can also sometimes feel stressful, having to inject and try to explain what I have and what I need to do with people I don’t know. As there are certain routines that I have to follow, for example waiting after eating for at least 15 minutes to let things settle. Otherwise, if I jump straight into an activity my number can drop quickly, which could result in a Hypo. I also have to amend my doses if I know the day I am going to have is going to be a particularly active one. But even with these practices, things can change on a dime. It can still catch you out even when you think you have it all figured out.
Strangely, I have also developed a weird super sense for sugar and can smell it from a mile away now. I once had a surreal experience during Christmas time when I worked in an office where everyone got given chocolate advent calendars. Every day, I felt like I was stepping into a room of hot chocolate, as I could smell them all! I also can’t eat anything now that is super sweet as I find it too much, it’s almost if my body knows it’s not going to do any good for me.
Having Type 1 has definitely changed how I live my life. It’s evolved my understanding of what my body needs and made me realise I needed to put myself first. It’s caused me to check in with myself a lot more and realise I can’t control everything.
I’m not so tightly wound up now if my numbers don’t always pan out, and also I’ve got better with not comparing myself to others, which I did a lot in the beginning. I was also fixated in the early days on maintaining a specific number in my yearly blood tests, but now I know I am doing all I can, so don’t have a melt down if I’m not quite there. I’m not denying there are still moments when it frustrates me and I want to cry if my numbers go awry or when my control is not perfect or my low glucose alarm goes off at 5am, but my reaction is not as extreme as it used to be.
My attitude towards it has also changed, as I feel a lot more at peace with my condition. I’ve learnt it is a day by day journey, and I think that’s how I have reached this new level of acceptance. Growth, maturity, and understanding have also played their parts.
I’ve learnt over the years to strive to be the best person I can be on this journey. I take small victories when I can, and I try not to be so hard on myself when things go wrong. I embrace each day as it comes, and also I know I can’t control the extraneous variables of life. I am also fully aware that my attitude towards it could change in the future, and I’m ok with that. Dealing with it right now in this very moment is all I need to think about.
“I am not afraid of storms for I am learning how to sail my ship.”
Louisa May Alcott
If you would like to find out more about Type 1 diabetes or the different types of diabetes please see the footnotes below which include website links for more information.
Please speak to your healthcare professional if you are worried about your condition.
Diabetes UK Helpline Number :
This is a dedicated diabetes helpline for all people in the UK with diabetes, their family or friends, and people who are worried they might be at risk.
https://www.diabetes.org.uk/about_us/news/number-people-living-diabetes-uk-tops-5-million-first-time
Type 1 diabetes occurs when some or all of the insulin-producing cells in the pancreas are destroyed. This leaves the patient with little or no insulin. Without insulin, sugar accumulates in the bloodstream rather than entering the cells. As a result, the body cannot use this glucose for energy. In addition, the high levels of glucose that remain in the blood cause excessive urination and dehydration, and damage tissues of the body.
Type 1 diabetes is an autoimmune disease. This means it begins when the body's immune system attacks cells in the body. In type 1 diabetes, the immune system destroys insulin-producing cells (beta cells) in the pancreas.
Diabetic ketoacidosis (DKA) is a serious problem that can happen in people with diabetes if their body starts to run out of insulin. When this happens, harmful substances called ketones build up in the body, which can be life-threatening if it's not found and treated.
A low blood sugar level, also called hypoglycaemia or a ‘hypo"’ is where the level of sugar (glucose) in your blood drops too low, below 4mmol/l. www.diabetes.org.uk/guide-to-diabetes/complications/hypos
Hyperglycaemia, or a hyper, can happen when your blood glucose (sugar) levels are too high. www.diabetes.org.uk/guide-to-diabetes/complications/hypers