2003. 9 years old. Another typical summer day. I’m playing outside with my friends. It’s the hottest day that Britain has ever seen. The freckles on my face have sprouted with a vengeance, my mother’s covered my face in suncream before I’ve stepped outside and hasn’t quite rubbed it in properly. There’s lots of laughter and the smell of grass beneath us as we pass a ball from one person to another.
The ball reaches my feet, but I’m overcome with the feeling I’m about to vomit. And the cold. Colder than I’ve ever felt in my life. I’ve never felt cold like that before and haven’t felt it since. I tell my friends I have to leave and run home, put on the biggest sweater I can find and curl up on the sofa. That was the day I became ill. That was the day I lost my childhood to numbers, needles and nurses.
The rest of that summer was a blur. All I remember is numerous visits to the doctor with no resolution. Constantly being told I had a stomach virus. Doctors turning their heads every time a skinnier and skinner looking mousey haired child walked in with her distraught parents. I lost 14lb in total that summer. I lost my ability to go outside and play with my friends. Nothing could quench my thirst. I was running to the toilet upwards of 10 times a day. I slept for what felt like days on end. My parents; frustrated, exhausted and frightened, took me back to my GP one last time. And even as I projectiled the juice I’d just downed all over the floor, we were sent home… again.
Except this time was different. I never made it through my front door. Instead, I fell through it. Well… lost consciousness and fell flat on my face. Eyes open. Lots of people around me. Water shoved in my face. My mother crying and phoning for an ambulance. Me – insisting I feel fine and never fainted. Blue lights, green uniforms. I don’t remember that ambulance ride, but I remember the faces of the nurses on the children’s ward as they told me they were 90% sure I was diabetic before any of the blood tests had even come back.
I’ve told my story and struggles with chronic illness many times over the years. I once run a blog solely dedicated too it as a teenager (rip thediabetesdays). But, in some sort of teenage driven determination not to let my condition define me, I moved on from blogging about diabetes and just tried to live my life and balance it as best as I could. I was a teenager that struggled massively as a result of chronic illness. Not only did I kick and scream about my condition, run to the bathroom in an attempt to hide my illness from my friends, and at one point, gave up on injecting and testing all together. But this, along with the many infections I contracted as a teenager, resulted in further rebellion and 9 hospital admissions in a year with Diabetic Ketoacidosis. The last admission saw me get admitted to Intensive Care, and although the only thing I remember is not being able to keep my eyes open for more than 5 seconds, reading back on my notes all these years later as an ICU nurse, it did not look good. My parents recently told me that they were pulled into an meeting about me as it was apparent that my lack of consciousness may have been an effect of Cerebral Oedema; swelling on the brain. Luckily, I’m here to tell my story. And how much I’ve moved on from my rebellious phase. One other thing that influenced my decision to give up blogging about my illness, was at the time, I felt that Diabetes blogs in particular were very perfectionist. Every post that I read was about success, and “good” blood sugars and endo appointments. And I was struggling… massively. It made me feel alone. It was also my first insight into how much of a highlight reel someone’s social media is. I almost felt like I was being lied too. Nobody would open up about their struggles, and interactive posts were more of a competition than a support network. This is a lot different today. Diabetes forums, interactive platforms, YouTube videos, group chats on WhatsApp ect are very much a solid support network. Many of times over the past couple of years have I typed in rage as I’m sat crying over a blood sugar that just won’t shift. In fact, this happened 2 days ago.
For anyone that doesn’t know that much about diabetes; I have Type 1. This means that my pancreas no longer produces insulin. Insulin is a hormone and the key to breaking down glucose in the body to be used as energy. Without it, the level of sugar in the blood rises, and the body starts to break down fat and muscle as an energy source, which can be dangerous. So, to manage this, we have to inject insulin regularly (whether by injection or via a continuous insulin infusion) and test our blood sugars regularly (for me, up to 8 times a day) and try and keep them in range. It’s a tightrope of daily decisions. How many carbohydrates are in this? How much insulin should I give myself for it? Is my blood sugar high because of something I ate and didn’t bolus correctly for, or am I getting ill? Should I eat something before I go to bed just incase my blood sugar goes too low? The list of mental questions we ask ourselves everyday is endless.
Diabetes is forever changing. Nothing ever stays the same. And one of the most frustrating things I’ve come to realise is that you can do the exact same things two days in a row with diabetes – eat the same things, exercise the same, give yourself the same amount of insulin, and your sugars will do complete opposite things. The hardest thing with diabetes is that the tightrope is so easy to fall off of. Getting back on is a million times harder.
Two days ago, I sat on my sofa, sobbing. Curled up in a blanket, in frustration. That it was my first day off in 4 days. That it was such a nice day, I had so many plans. And here I was, just trying to stop myself from vomiting and having to go to A&E. This isn’t a regular occurrence by any means, but these episodes never get any easier. I couldn’t identify where this had come from. My pump was fine, and yet, no matter how much insulin I gave myself, it was just like water and my blood sugar continued to sky rocket. It hit 28 (It’s supposed to be between 4-8) and I hit my limit. Some deep breathes and several packets of tissues later, realising that the stress from crying probably wasn’t helping my blood sugars, I put on my big girl pants and realised that I’ve done these days so often and got through every one of those before. And this was no different. I have a plan – although not a strictly written down plan – I always have one in my head. I also have my resources for getting through this. This is why I choose to sit and educate myself when I feel well, why I attend my appointments however much I don’t want too, why I went to DAFNE… to change my attitude and strength in managing for myself. So, I got up, flicked through the resources and wrote out my plan – which I wanted to share. Chronic Illness, no matter what it is, is bloody hard. I commend anyone that lives with illness and has to manage day in day out to feel the most well you can. I commend anyone that has to give up plans because illness gets in the way. Those who live with pain and tiredness, but battle through. You are all warriors.
When I feel unwell, there are a few steps I like to go through.
Accepting that I feel ill and not well enough to do things is so difficult. This might mean that I don’t go out on a day off. Or it might mean that I call in sick for a shift. Accepting the fact these days will 99% involve the sofa, neflix and a blanket are hard. It’s even harder on hot, sunny days, when instagram is filled with people being productive and enjoying themselves. I mostly try to put on a series that’s easy to watch, binge and put my phone away.
2. Come up with a plan
With diabetes, we follow a course called DAFNE (this involves normalising eating foods we may otherwise be told by our friends should we be eating that, and many flowsheets and steps to follow when we excercise or feel unwell, otherwise known as “sick day rules”.) I’ll normally dig out all of my packed away educationL tools to help me because brain fog is REAL. I also try and tell someone I don’t feel well, even via text when I’m at home alone, so they can keep an eye out or be prepared for a call. I always prepare for the worst and always have a plan in mind to get myself to hospital just in case.
Breathing exercises help me not to panic. I’ll often chuck on and binge netflix. I also won’t fight tiredness and will allow myself to sleep if that’s what my body wants to do.
4. Only try and do things if I really feel I can
It’s really easy to push yourself to do things – cook food, run errands, go see friends – but they often will end up making it worse.
and most importantly
5. Remind myself that these days pass and this isn’t my fault
9/10 times you will feel better, even if it takes hours. It’s a process. and when I’m feeling up to it coming out of an episode, I will try and do something relaxing and enjoyable. This often involves me remaining under my blanket with netflix, but I’ll keep my mind busy with some cross stitch or something else.
It’s so important to realise how strong you are. And how strong you continue to be. A chronic illness does not define you, but it just another part of you. I view it like I would anything else – liking musicals? a part of me. being a nurse? part of me. singing even though I have the most out of tune voice you’ll ever hear? part of me. Enjoys a pink gin a little too much? a part of me. Diabetes? a part of me, not the whole of me.