"I have only ever thought about diabetes complications once in my lifetime. That was up until this week."

To be really transparent with you, I have only ever thought about diabetes complications once in my lifetime. That one time was when I was age 10 or 11, in the midst of my rebellion phase (sorry Mum and Dad) and my consultant was trying to get through to me and asked me what I saw in my future. 

That was up until this week, which made the second time that I thought about diabetes complications. The second time was when a letter came through the post to tell me that I have background retinopathy. My first diabetes complication.

So here I am, 25 year old me, 21 diabetic years down the line with my first diabetes complication. I knew this would inevitably happen as time went on, but I did not expect it to affect me whilst I was in my 20's.

Picture this, you do your absolute best to look after your health, to be told after 21 years that you have your first diabetes complication. People with diabetes are invited to have their eyes screened every 12 months to check for diabetic retinopathy. Rapid changes in blood glucose levels cause the eyes to contract and expand more rapidly than usual, which over time, causes damage to the blood vessels. Background retinopathy is a a term to describe small bulges (microaneurysms) that appear in the blood vessels in the back of the eye(s) (retina), which leak small amounts of blood. And unfortunately, it is now a term that describes the small bulges in my blood vessels, in the back of my eyes which are leaking small amounts of blood.

There is much to be grateful for, which I can say now that I feel more level-headed. It is stage 1 at present, which means that it is very common and can be reversed over time. However, it does put me at an increased risk of vision problems.

This diagnosis comes just a mere few months after being told that I have a pre-diabetic HBA1C. This is a blood test which measures your average blood glucose over a 3 month period. This is something that I could have never dreamed of and I have felt an immense sense of pride and confidence since that appointment.

When I opened the results from my latest eye screening, I immediately felt a strong sense of guilt, quickly followed by shame and anxiety. My mind then went to the worst extreme, and I thought about what treatment for retinopathy looks like and how scared I felt about potentially losing my vision. It's funny how our brains are hard-wired in this way. I am over the shock of it now, and the more logical part of my brain has taken over -thankfully(!!). The only thing I can do (and that is sort of in my control) is to continue to manage my blood glucose levels to the best of my ability, which is becoming much more realistic with new technological advances (my closed loop- more on this later).

As previously mentioned, I have only ever thought about diabetes complications once in my lifetime. And yes, I think now is a good time to acknowledge that I am acutely aware of the privilege in that statement. That one time was when I was age 10 or 11, in the midst of my rebellion phase (sorry Mum and Dad) and my consultant was trying to get through to me and asked me what I saw in my future. I told him the answer I thought he wanted to hear.. a house, a husband, babies and cats. He gently (and incredibly skilfully) navigated a discussion around how those things might not be possible if I carried on down the self destructive path that I had carved out for myself. I can't recall if it was that discussion that pulled me out of that phase or something else entirely.

I continue to gain comfort in situations that have a high chance of inevitability. That peace of knowing that well, you did everything you could have done and I know that I will continue to do everything I can do until that is no longer working. And when that is no longer working, I will explore every other avenue. So here is to embracing the clarity of inevitability and the comfort and privilege of a fairly steady 21 years.

Swirls, blurs, your complicated little life. You make this little life complicated.

An internal monologue from the perspective of a brain starved of glucose (hypoglycaemic). The body is walking to work. The street is busy, the world turns in slow motion. Meanwhile the brain runs at a million miles an hour.

Hands find head

Meet plastic frames

Glasses

You remembered. Great.

Two strides later

The pavement looks different

Swirls, blurs, complicated little life

Scan.

Well done, idiot.

Eat.

Walk. Now. People will think you're lazy.

They are looking at you.

Are you even listening??

Her, over there. She's looking.

I did try to tell you.

Now right foot, left foot. 

Tut

Tut

You should have eaten.

You should have gotten up earlier.

You should have finished that coffee.

You should be embarrassed.

You should look after yourself.

You should stop being so stupid.

You should have thought about this earlier.

You should not let this happen again. Never.

You would think after 19 years it would be easier if you just did it.

You only have yourself to blame.

You should know better.

Snap

Are you there?

Banana

Orange juice

Focus

Left foot, right foot.

She's still looking at you.

You're pale

Your eyes feel horrible

They look pretty ridiculous too. Glazed over like..

Wait, has she taken something?!

Hahahahaha

Oi

Walk in a straight line.

Christ is it really that hard????

You should feel better by now.

Weakling

Why aren't you feeling better by now?!

Someone else in this position would be fine now.

You're overreacting.

Maybe this is it.

What do you reckon? Do you think he'd help?

I doubt it.

Swirls, blurs, complicated little life

You'll be fine in twenty minutes.

Doesn't feel like it though. 

Does it?

Beep

Whizz

Repeat

Tomorrow.

You should do better tomorrow.

You ought to do better tomorrow.

Swirls, blurs

Your complicated little life.

You make this little life complicated.

Based upon my personal experience. Be kind.

A.

What DKA Feels Like

I write in hopes that someone, somewhere will relate and gain comfort in knowing they are not alone and every time I share a post my mentality remains the same. Perhaps others will be able to catch these symptoms early, should they present themselves. Please be sensitive in commenting on this post. Whilst I welcome feedback and constructive criticism, this post is sensitive to me and my experience.

Diabetes is often described as an 'invisible illness' but sometimes it is more visible than we would like to admit. In my instance, this was brought on by the combination of excessive vomiting and dehydration caused by the combination of a UTI and viral vertigo and the diabetic ketoacidosis that followed after my body had gone through so much.

I was ill for a fortnight leading up to my admission. I have never felt so unwell and I just knew it was something sinister. Since I had no other symptoms other than feeling generally very unwell my GP shrugged me off. My blood sugars were on the low side and my ketones were low.. (average of 0.2). Above is a photo the day before I was taken into hospital. You can see that something isn't quite right just by my complexion, thinning face, dry lips and sunken eyes. How nobody knew is beyond me.

I was diagnosed with a UTI on my second visit to the GP and given antibiotics to treat. It wasn't until the following morning that I woke with viral vertigo and began vomiting which sent both my blood glucose levels and ketones sky high, that I was taken seriously and my health was deemed 'at risk'.

It wasn't just the feeling of being unwell but the physical changes in my appearance that really alerted me. For someone who had lived with diabetes for 15 years having had no experience of diabetic ketoacidosis, I guess I was naive to think it would simply be blood sugar and ketone related. 

My appearance and body changed completely within the fortnight leading up to my admission date.

Since posting my 'DKA experience' blog I have had lots of questions about how the DKA slowly crept up on me. Here is a list of symptoms that I experienced which surprised me most. In writing, it all seems so obvious but I have written this list in hopes that others will be able to catch these symptoms early before the life threatening state of DKA arises. 

Particular attention to the facial
features here

- Sunken Eyes 

    This sounds really obvious that this would concern you but trust me, when it happens to you, you blame every other possible explanation. I was convinced my hay fever had reached an all time high. My eyes were completely sunken into the back of my head with dark circles under them. The complexion of my skin was dark and dull. I was very pale and my lips were dry and colourless.

- Shallowed Breathing

    Again, sounds like an obvious one but I did not noticed how shallow my breathing was until I was alone in a quiet room, which when you think about it, doesn't happen very often. I did notice that when I tried to normalise my breathing, I become incredibly out of breath very quickly. 

- Restlessness

     For a generally calm individual, I had difficulty sleeping and could not stand still.

- Fruity Breath
Having high ketone levels often causes bad breath. One of the ketones, acetone causes your breath to smell like nail polish. No matter how many times I brushed my teeth I could still smell it.

A physical sense of exhaustion

- Lethargy

    All I could do was sleep. I had zero energy and it felt like everything was in slow motion. Every movement was heavy and exhausting and took all of my might. I think my body was so focused on keeping me alive that any other movement was secondary.

- Relentless Headache

    I can remember my head just pounded and pounded every minute of every day. Paracetamol was not touching the sides. In the last few days it presented as more of a migraine. Certainly when I fell into DKA it caused major discomfort. 

- Physical Strength

    My muscles were so incredibly weak, by this I mean I could hold up my arm and see it physically shake. I would wake in the morning and struggle so much to hold my own weight that it would make me feel nauseous. I struggled to walk and when I did finally leave hospital it was in a wheelchair. Although to be honest I was just so happy that I was leaving I couldn't care how! 

- Appetite and Weight Loss

    I was so focused on just how I was going to take my next breath that I don't really remember eating much. My clothes began to hang off my body. I lost a stone whilst in hospital. I did not feel like I could eat when in hospital as I was so terrified of vomiting again incase it would set off my ketones and I would have to live it all over again that I didn't eat. Plus, I had been pumped with so many fluids my appetite had completely disappeared. This took a long time to regain.

- Slurred Speech

    I was sent home from work because a member of staff noticed that my speech was slurred. I was pulled aside and was described as speaking 'gobildy goop'. To be honest, it was at that point that I began to really question what was happening to my body and I suddenly realised I was not safe to be alone.

- Confusion

    Physically, I could have been anywhere. My alertness decreased rapidly as I had no recollection of where I was, what I was doing or how I got there. I was completely out of it. 

Honestly, these images show just a fraction of the symptoms listed above but you can see many of the symptoms that I have described. They are hard for me and no doubt, you as a reader, to look at but you can clearly see that something was very very wrong. It is so easy to look back in retrospect and I am thankful I can do that. 

My intention is not to scare anyone with this post. I have lived with type one diabetes for 15 years with no experience of DKA but please, if you look physically unwell or notice changes within yourself or your child PLEASE persist. Continue to ask health care professionals like a ping pong ball and visit a different doctor every day if you have to until someone gets to the bottom of it.

If someone in your world suddenly changes or looks unwell, please do not try to spare their feelings by not telling them- it could save a life. I am lucky that thanks to my family, friends and health care professionals working together that I can go on with my life but others have not been and will not be so fortunate.

Navigating

I'd like to start by saying THANK YOU for the overwhelming support that I received on my previous blog, my DKA story. The community Diabetesgeek has created has been phenomenal and I am so glad this platform enables me to share my experiences with people who are willing to listen and promote my voice.

It seems that this blog is reserved for big life events like starting an insulin pump, a hospital admission or diabetes burnout. This time is no different as I start university in September to study a career I am so very passionate about. My heart flutters at the thought of a new city to explore, a home to call my own with my partner and three years to delve into study and clinical placements.

Much like anything and everything in life, with increased independence comes increased responsibility. With time, increased responsibilities come with great consequences.

It is so much more than moving away from home, cross country. Dare I say it, this is more than missing my family or having to pay the bills.

It is inevitable that those issues will present themselves as time goes on but naturally, my healthcare is at the forefront of my mind. I have always been under the care of the same diabetes team- give or take the change from paediatrics to adults. Thus the thought of changing hospital and CCG care is so alien to me. Along with the stress of finding a new GP and pharmacy to register at so I can order and pick up my prescriptions. Having to get to know new health care professionals instead of trusting those who have treated me for my whole life. It seems a bit surreal. Perhaps this is the start of something bigger, to continue to shape the life that I want to lead. For now, it appears to be one big stress ball full of paperwork, signatures and big scary adult decisions.

This is also my comfort zone and no one likes to leave their comfort zone. This city is all I have ever known, the same roads, routes and days-out. Although I do tend to flourish most when I am immersed in the deep end, whether that be unfamiliar places or events. I have my blog to thank for that new-found confidence. So whilst a new home is everything I have ever yearned for, now the time has come it makes you second guess yourself.

"A comfort zone is a beautiful place, but nothing ever grows there.."

August has been my 'summer break'. I finished slightly later than my peers as I had to play catch up due to my admission in March. With great determination I have been lucky enough to clear time for a month of downtime with very little responsibilities. Something that will soon become harder to seek. To my surprise, I have found it quite the challenge to simply do nothing, which sounds ridiculous. Constant 'should I be doing something' swarms my head especially when I know how busy life is going to be come September.

And that's all for now really. I am currently dipping my toes into a device called the miaomiao, which is an add on to the freestyle libre. I am in the midst of trying to get the libre on prescription. I toyed with the idea of buying a Dexcom G6 but have recently put this fantasy on hold while I get my feet on the ground in the land of libre. My insulin pump is my best friend, it allows me to have such freedom. Of which only us type ones would understand and appreciate. It really is a fantastic piece of kit.

Going forward, I hope that the waves of change carry me gently and steer me toward my intended direction. I hope I will find quiet corners to continue to write on this space and to interact with you guys. As I mentioned earlier Diabetesgeek has allowed me to interact and meet the most wonderful people, all while simply being me and doing diabetes my way.

Thank you for reading.