Sunday, 1 April 2018

My DKA Hospital Admission

I took this on Monday.
I have never felt so unwell.
I always saw posts about how someone had 'slipped into DKA without realising' and how 'easy' it was to creep in. I found it utterly bizarre and impossible that you could get to that stage, having had no successful interventions.

Until it happened to me.

After 15 years of living with Type One Diabetes I had my first experience of DKA. 
I have had ketones and sickness bugs twice before but this was totally different. It was scary and an experience that will not leave me. 

I had DKA. Although it was not sneaky and it did not creep up on me. I felt every inch of it in full force. I felt it in the early stages and I felt it when it had me pinned to the bed, shallowed my breathing and made my eyes the heaviest pieces of armour in the world. I felt every slurred word, every jumbled sentence that left my mouth. Every jolt, needle, bump and bruise. It was very real. It was very apparent and it happened to me.

A Summary of What Happened

Arrival at A&E
Friday - Fell dramatically ill (vomiting and ketones). Rushed to A&E, flushed with anti-emetics and IV fluids. 
Saturday- Went home. Rang senior DSN and took the day off work following her advice. I was told my body needed time to re-balance. 
Sunday - returned to work. Got sent home.
Monday-Wednesday- Feeling progressively worse. My blood sugars were low and ketones non existent. I looked dramatically unwell. 
Wednesday- Visited GP. Diagnosed with a urine infection (UTI) and given antibiotics.
Thursday morning - Woke with (what was later diagnosed as) viral vertigo. Could not lift my head  off the pillow. Vomitted A LOT, ketones and blood glucose levels shot up. Rushed to A&E.
Friday - Moved to MAU- Officially in 'DKA' - pathway included insulin sliding scale, glucose and saline/potassium.
Monday - Discharged early evening with anti-emetics and antibiotics.

"We need to start bed two on the DKA pathway"

It was at this point that my body told me to stop fighting. To let go. So I did. I stopped trying and fell into what I can only describe as a vegetive state.
I laid my head down and shut my eyes. A wave of numbness overpowered and utterly disabled me. My body switched from deafening screams to total silence - I felt peaceful.

I knew I had to focus every fibre of my being in trusting the process. There was no point in fighting any more. I didn't have it in me. My body told me it was okay to let go, so I listened.

The longer I kept my eyes shut, the quicker I would wake up.

Despite the rushing team of medical professionals swarming my room, I felt like the fight had been worth it and I knew this was the time to let the doctors do their thing. I remember telling myself not to be scared and that it would be okay. I felt this feeling that there was nothing else I could do, it was simultaneously the most terrifying and peaceful juxtaposition I have ever found myself in.

I lay slumped on the bed, eyes closed shut, waiting and trusting the process. Time became non existent that day. I couldn't tell you where I was, it was an out of body experience- I guess. I had shut down. I remember that day of severe DKA well but at the same time not at all. It resides in my memory as one ugly and painful blur, with no time milestones to base my memories upon. I could hear those around me and was aware of what was happening but did not have the mental capacity to be present in the room. It was all consuming and totally deafening. I lost all bodily functions and movement which was pretty undignifiying but at this point it was the least of my worries.

Whilst I was on the DKA pathway I had three IV drips attached; an insulin sliding scale, potassium/saline and glucose. My body had been flushed through with anti-emetics and strong antibiotics that morning. I remember the doctor telling me they were strong enough to wipe out anything in my body that shouldn't be there. They checked my blood glucose hourly and took blood every two hours. I was so dehydrated that each time they needed to take blood it took three failed attempts before they found a vein. 
They began to take blood from my feet. There were a lot of silent tears.
At one point, I had three MAU doctors trying to take blood from me, two by my feet and one holding my hand.
Friday - 'Waking up' in MAU

This is after I 'woke' from my coma-like-state and I felt A-M-A-ZING! No, seriously! I laughed and joked with my mum at my bedside. I asked her to take this picture. It wasn't until I looked back on the images she had taken weeks later that I realised just how ill I was. I also realised how far I had yet to go. I had felt so unwell that I thought at this point I felt better.
Friday - MAU

That evening I moved ward shortly after experiencing a hypo. I felt completely out of control and again, the sheer reality of how unwell I was rippled into my stream of consciousness.

The next three days consisted of peaks and troughs of feeling dramatically better and then completely out of it. It came in waves. I moved to a different ward late Saturday night.

I was incredibly lucky throughout my hospital admission that I was very rarely alone. Between my family, specifically my Mother, and my girlfriend, I always had company.  Words cannot describe how grateful I was to have their company. It was emotional for us all but the bond between my partner and I only grew stronger. Her strength and utter resilience pulled me through at every hurdle.

Arriving home on Monday
This is minutes after arriving home. I felt incredibly weak  but so happy to be back in my safe place. It was amazing to be surrounded by familiar things and people, in my own clothes, my bed and my loving dog.

I remember feeling scared for what was to come. I have never had to recover from anything before. Life resumes, whether you are ready for it or not. There is no debrief, rest breaks or service announcements. In one way it was reassuring, but in the same breath totally overwhelming.

I spent the next two weeks recovering at home- doing whatever, whenever I wanted. I lost a stone in weight, I had lost my appetite and could not tolerate foods. I am working hard to regain that even now.

Whilst recovering I caught another virus which presented as a viral rash, a trip to my GP confirmed.

Recovery Has Been A Whirlwind

Recovery - A skeleton of
what I was

I will be honest, it has taken me up until this week to feel better. I still do not feel myself but I have every faith I will get there with time.

I have felt every emotion under the sun. I have lost a lot of weight but my general complexion is looking a lot healthier. I still feel quite uneasy knowing there was nothing else I could have done - it really can strike at any time.

I did not realise how ill I was until now. It has all been a whirlwind. My first admission as an adult was a totally different experience and the things I went through will never leave me.

It feels good to be on the other side of it. Standing on my own two feet feels pretty awesome. Never take good health for granted because it's amazing how quickly it can take a turn.


Thank you for reading.

Amber xx

Thursday, 16 November 2017

"Do you need any psychological support?"

She looked me in the eye, and I could hear the desperation in her voice.

"Do you need any psychological support?" she said with a fake confidence.

I paused.
Image result for people who need help quote
She knew that I desperately needed help, and wanted to provide it but we both knew there were no services in place.

"No..I'll be fine" I responded, sheepishly. 
"Okay, well you know where we are should you need us.." 

I so rawly wanted to say yes, breathe a sigh of relief, collapse in her arms and tell her that is all I have been waiting for. And she knew that. 
You could tell by the look in her eye, that she had just asked a rhetorical question, one which covered a grey area. It wasn't fair. I wanted to say 'yes'. I wanted to say yes so badly.

What would she have said if I had answered 'yes'? I often wonder. You can imagine; eyes diluting, pure guilt spreading across her face the moment she realised she had promised something that was simply not possible. 

Is there some magical door that could have been unlocked with mental health support services for people with type one diabetes? Would it have lead me down a path of type one specific CBT, one to one therapy or peer support groups? Because that would be the ideal wouldn't it? Just identifying that those with long term health conditions need mental health support so desperately, that it is a thing.

"Have you had counselling or CBT before?" she tentatively asked.

The fact was I had, a year previous, but it was no thanks to diabetes. Maybe she was hoping I had some mindfulness experience or my own self soothing toolbox. It's not the same, though. Like giving a child a toy, when all they need is a comforting hand. 

It would have been a different appointment if she offered some psychological support, and instead of feeling deflated and let down, maybe I would have left feeling empowered and had some way of moving forward.

Wednesday, 30 August 2017

"I assumed it would get better"

I'll be very honest with you, I'm just feeling very 2/10, when usually I'm a solid 8/10.

This blog post is not a super positive one but is an honest one and I really want to document my life with type one diabetes in every which way and for the most part that's incredibly upbeat and fun but today I need an honest chat. I want to look back on this blog and see my progress.

Something I've always prided myself on, been an advocate for and heavily supported both online and offline is the importance of resilience and that actually it's okay not to be okay. Something that has surprised me about starting insulin pump therapy is that those personality traits feel like they have plummeted and at the beginning, I brushed it off and thought 'it's not a big deal' it's just because this is new to me and it's all a bit strange. I assumed it would get better, you know, just teething problems, if you will, but it's not getting better really, in fact it's quite the opposite.

I don't want to just waffle on for 20 minutes although there's a good chance that'll happen but I want to write about how I'm feeling and what I'm doing to try and pull myself out of that because I don't think what I'm feeling is unique, I know there are lots of people that feel this way, but I want to come back to this and see how things have changed. Burnout is not a feeling I am unfamiliar with, but yet every time I feel this way it rears it's ugly head so differently, which makes it hard to identify.

To say I've stopped looking after myself would be wrong and simply untrue, but I guess I've just become disengaged with my diabetes. It's not that I don't care, of course I do, I just haven't given it 100%. I'll lay it out for you, my blood sugars are awful, let's take today for example, BGs ranged from 2.3 - 23.8mmol, with food unaccounted for and a cannula that's been in for to long. That's been my 'normal' for the last few months really and it's finally begun to grind on me.
I feel so sick, all the time.
I tell myself 'it's because you've had a busy day' but people live lives much busier, much more stressful than mine and can keep diabetes at the forefront of their mind. I need to stop with the excuses. As the episodes of extreme high BGs has become more frequent I find my mind drifting to all the possible complications I could have one day, and that terrifies me. You always think 'that doesn't happen to people like me' but actually who am I to say it won't? I've got no idea.

All of these things when I write them down sound so superficial and if someone said them to me I'd say these are just skin-deep things, easy to fix, you've got through it before, but all of a sudden I've noticed how unwell I have been feeling, which is not like me. I've been feeling worse and more and more down about it and last week I just thought 'this has got to stop' because these are no longer teething problems, we are talking 7 months down the line here and I coped better on injections. Although it's not much of a progress marker, my HBA1C has increased since starting on my insulin pump, and that's not what I wanted. So I know I've got to do something about this, it's not just going to magically disappear. Some little things I've been doing is celebrating when my blood sugars are in range, and really taking a moment out of my day to recognise how good I feel.

I realised there was a problem when the crappiness began to permeate into other areas of my life, I've gradually stopped engaging online, became slow with replies to messages and emails, let my blog sit without regular posts. Don't get me wrong, life has become incredibly busy this year and it won't slow down now for a long time but I could have made more time for engaging with the peer support available. I stopped engaging because I feel like I don't have anything to say and I'm never that person.

I didn't want this post to sound like a massive moan because that's not what I want this space to be, but I've got to be honest with you, I am feeling pretty crap at the moment, I don't feel good in myself and I think that is starting to creep into other areas of my life. I'm trying to be quite proactive about this and put myself back on the right path.

Tuesday, 25 July 2017

6 Months On Insulin Pump Therapy

I've been using an insulin pump, Accu Chek Spirit Combo, for six months (doesn't time fly) and although I still face my wobbles, it has become part of my life so naturally.

One of my biggest concerns before starting insulin pump therapy was being connected to a device 24/7, 365 days of the year. Which is quite ironic really as I've never felt as free as I have over these last 6 months.

Pancreas in a box

I wake in the morning and stretch as I begin to prepare myself for the day ahead. I run my hand over my stomach and feel my cannula, still very much intact, I follow the tubing down with my hand, blissfully unaware until I am met by my insulin pump no more than a meter away from me, laying freely in the bed. This little device is effectively my 'pancreas in a box' that keeps me alive, I do all the hard work but I guess it's a little like a life support machine. Without it, I wouldn't be here.

Sleeping has not been a problem, there is something utterly therapeutic about letting the pump wander between the sheets, otherwise it'll sit comfortably in my waistband whilst I sleep happily without disturbance. It trickles small amounts of insulin down the tubing and into the cannula every hour of every day.. it'll beep randomly and I smile as it feels like a bittersweet reminder that everything is working as it should be.. well done pancreas in a box, as long as you keep doing your job I think we'll get on just fine.

I get out of bed and prepare my breakfast, I test my blood sugars on my pump handset, enter the amount of carbohydrates that I plan to eat and watch as my meter uses its bolus wizard to calculate the specific dose of insulin I need. Within no more than a minute my insulin is delivered, with no needles having entered my skin. I unknowingly smile to myself as I remember just how lucky I am to be in this position and wait for my bolus to kick in.

I get dressed in the morning and feel like a badass

After breakfast it's time to get dressed, staying mindful as to whether I'll have a pocket to keep my pump in, or if I'll need my multiway body band to fasten under my top. I pull up my jeans, remembering to be gentle with the tubing hanging from my stomach, and place any excess tube in my back pocket along with my insulin pump. I get dressed in the morning and feel like a badass, part robot, ready to take on the world. I walk down the street proud of my little box, which will stay in place all day as I can bolus from my handset.

In a day and age where everyone is glued to their mobile phones, it feels no different to use my pump handset to bolus for my lunch, in fact no one turns a blind eye, it's oddly satisfying. There's no panic to find the nearest toilet so I can inject, or having to worry about which site to use, or which is the most accessible. That's not to say that I ever felt different or self conscious when using injections, but my quality of life has greatly improved.

Being part robot is pretty cool too. What's not so great is when I rise in the middle of the night and forget to bring my pump with me, but with time I find my hand is always there to fumble around until it reaches those oh so familiar walls of my insulin pump, a safety net if you will.

Image result for change your perspective quote Out of the ordinary?

I re-read this post in fear it all sounded a bit... normal and in fact I am here to tell you that life is just the same with an insulin pump. My medically equipped body, which all felt a little unfamiliar at first, is quite ordinary and that feels so good to type, 6 months on.