DKA and a displeasing encounter

Thursday 28 November saw me sitting in A&E feeling like I was burning on the inside. I'd been feeling unwell in the days prior, and I'd been in A&E on the Sunday with extreme pain in my side that they couldn't find a cause for. All the pain and the stress and all the symptoms of an infection came to a head on that Thursday, my blood sugar shot up and wouldn't budge. With no means of testing my ketones I decided a safe bet would be to go via A&E on my way home from work. I got on the tube, found a seat, and sat down for the 4-stop journey to the hospital, I didn’t feel too horrible but I think adrenaline was keeping me going at this point. 

I was thankful to be greeted by a waiting room that wasn’t too busy, and a receptionist that knew what I was talking about when I mentioned ketones; “Oh yes, someone came in with those yesterday actually!” Making them sound more like a bag of sweets than a potentially life threatening situation but I was grateful for his competence. If you’ve ever been to A&E with high blood sugar then you know the drill. Within half an hour I was in Majors, in DKA, with blood ketones of 6 which isn’t what I expected at all.

I was hooked up to all the necessary equipment, IV insulin, potassium, saline...a heart monitor that screamed every two minutes in discontent at my heart rate of 130. Within a few hours all was calm again, my heart wasn’t trying to beat out of my chest, my blood sugars were at a more manageable level of 18 and I sat and listened to the nurses arguing with the doctors outside the room about who gets to use the computer first; “There are PLENTY more computers around the department, this one doesn’t have YOUR name on it”. 

I settled in to what would be a long night, but I was feeling better and all was under control, or so I thought. Then came an overwhelming feeling of sickness and a headache that had me wriggling in discomfort. I knew it was time for a ketone test in the next few minutes so when the nurse came in I made sure to look at the result before she whisked the meter off, 6.1. 

2:30am rolled around and I was feeling incredibly unwell, now in Resus. For some reason they couldn’t get my ketones or my blood sugar under control, and my blood pH was now 7.0 and I was in severe DKA. I’ve never felt heart burn like it. My veins had disappeared into the depths of dehydration and the usable veins were inhabited by cannulas. After about an hour in Resus, a blood gas that wasn’t getting better and no means of getting blood out of me ITU were called to assist by means of an arterial line and at 4am, after 10 hours, I was admitted to ITU. 

I spent 6 nights in hospital, 5 of those in ITU with one night back in DKA, potassium that wouldn’t come up and a heart rate that was concerning the consultant. On the Tuesday night I was finally transferred to a ward, it was so quiet and peaceful and worlds away from ITU. I finally slept more than 3 hours and I was discharged on the Wednesday evening, back to health despite the jelly legs on the train home. 

I’m not telling you this for attention, or because I want you to feel bad for me, I just know that I went through quite something in those 6 days and with my stubborn nature I like to downplay things sometimes, and if you ask me about it I’ll tell you all it was, was boring and tiring; “but - I’m okay now!!” And I am, but I can’t ignore the fact that diabetes really tried it on that Thursday night. I’ve never felt so unwell with diabetes and I know how serious it was. 

Before I finish this blog, I'll take you back a little bit to the Monday evening. I’m reading my book and a doctor walks in, introduces herself as the consultant and I turn my attention to her. She asks me how long I’ve had Type 1 diabetes for, so I tell her, 10 years. Okay she says, then moves on to her next sentence, in the most patronising tone I’ve ever heard; “So, there’s a little test we do and it’s called a H B A 1 C test, do you know what that is? Ever had one of those?” Erm, yes. More times than I can count on two hands, because I’ve had Type 1 diabetes for an entire decade. “Well yours isn’t great” I told her I recently had it tested so I know what it is. She was smiling, but she had her eyes scrunched up like she was scrutinising me and every answer I had was met with “Hm” and with that same facial expression, she moved on to her next question; “Are you aware of the complications of diabetes?” Yes I am. “Go on then, list them.” 

Never in my 10 years of living with diabetes have I been asked to list the complications like it was some sort of test. I told her I wasn’t going to list the complications, she persisted, until I just said no. And she stopped asking. She smiled again, eyes scrunched; “Well, I’ve seen people younger than you who are blind. You’re half my age.” Was I meant to congratulate her on being older than me? On making it through her twenties care free? On not having to grow up with this responsibility?  I didn’t even have the words to respond to her at this point and I certainly was not going to get upset in front of her so I just said okay, and thanks, over and over until she stopped.

If the lump in my throat hadn’t been preventing me from stringing together a proper sentence I’d have had words, but I saved my breath and let the tears well up once she’d left me alone and I spoke to my mum. Once I was done being upset I felt annoyed, annoyed that she made me feel like that and annoyed that she judged me so badly. I am not a number, my life is not what my hbA1c is - my hbA1c will not tell you what’s going on in my head, it will not tell you what’s going on in my life outside of diabetes, it will not tell you anything that justifies talking to me like that. 

I understand that she was just “doing her job” but there are ways of saying things, ways of doing things. I wonder what she thought she was going to achieve by asking me to list the complications of diabetes? Scare tactics do not work. Do not make me feel hopeless, trying to scare me will only make me feel worse and you will not motivate anyone to do better. Not a day goes by that I don’t wonder what my future looks like, so how dare she, as someone who doesn’t even have diabetes and wouldn’t have the slightest clue what it’s like to live with it day to day, ask me to prove to her that I know I could go blind, or develop kidney disease, or lose a limb? It's drilled into us from the day we are diagnosed and I do not forget it.

I am so aware of the risks, and it’s so demotivating when you are trying so hard to avoid them and people like that remind you...remind you of the fact that you might pay the price for a disease you didn’t ask for, or cause, but somehow like magic, overnight - we are expected to be perfect, at 11 years old, 18, 22, 30, 45 whatever age you are, at managing diabetes. All while trying to grow up, fit in to your new school, buy a house, grow a family, whatever it is, whatever stage of your life you're at and go through all the other crap that life will likely throw at you that has nothing to do with diabetes. 

I’m not asking for sympathy in telling you this. Most of the time I’m totally fine with diabetes, I get on with it and I try not to dwell, but I do just have to get that encounter off my chest and I cannot ignore the fact that life with Type 1 diabetes is not easy. The bruises on my arms that would have a lot to say for this admission are finally healing, but this admission will stick with me, and her conversation will stick with me, but for the wrong reasons and probably not for the reasons she thought when she introduced herself to me that evening. 

Support

Support. It's the very foundation that the diabetes online community is built on, we're there for each other because we understand each other, we look out for one another. Or so I thought.

When I was fourteen years old I opened a laptop and wrote my first blog post, and I posted it. I was a teenager trying to navigate the world at the same time as navigating a chronic condition and writing blog posts was my way of venting, of clearing my head, I didn't expect that people would read my thoughts, but they did and that's why I'm where I am today.

That's why the past 10 years of my life with Type 1 Diabetes have been an absolute whirlwind but also full of cool events and speaking opportunties and volunteering, and I hope it continues that way. Being an advocate for this disease has given me a purpose and made me feel like all those nights I've spent in hospital or been up at 3am treating a hypo, or worrying about what my retinal screening results will say, haven't been in vain. I don't feel like there are reasons for everything because some things are just crap, but I feel there was a reason for this, for my Type 1. Maybe.

In life lots of people get lots of different opportunities, some don't, some don't want to put themselves forward and some don't do much to get themselves there. For example in school, in schools there's often a Head Girl or Head Boy, they're chosen because they have something to say, they're good in school and they deserve that recognition and they want to represent their fellow pupils. Now not all the pupils can undertake those roles, but it doesn't mean their voices are any less or that they don't deserve to be heard, but just because they're all pupils at the same school it doesn't mean they're entitled to that title and there are still other ways they can contribute.

I want you to keep that analogy in mind, as a loose explanation of what I'm about to write.

Twitter has been a hub of negativity for the past couple of days in light of recent events, one being the dxLisbon bloggers event with Abbott and the other being the invites to No.10 Downing Street. Two wonderful opportunities full of wonderful people all of whom deserved to be where they were. However as with any high profile diabetes event, they didn't come without their negative perceptions. Many were confused about the bloggers event, questioning motives and whether or not it was ethical, others questioned the Downing Street event wondering why some were invited and others weren't.

I won't get into the details, but what I will say is every single event or conference attended by people with diabetes is always on behalf of the wider community, they're representative, and the bloggers event with Abbott is full of learning and positive experiences and skills they can bring back to Social Media and no one is obliged to speak about their products or services. The Downing Street event was to celebrate those who work tirelessly to improve the lives of everyone with diabetes - so what is with the jealousy and the tearing down of those who were lucky enough to attend?

There is no harm in celebrating other people's successes and being proud of their achievements. And the only reason they are there is because they have dedicated their time to the greater good. Yesterday I was told that by accepting invites to speak at conferences I'm taking away someone else's opportunity and that we need to make way for others. They're right, it is so important for everyone to be heard, but it's not fair to say I'm taking something away from someone else, I have spoken at conferences on something I'm passionate about and have experience in, and I hope other people will take up and/or seek out opportunities to do the same with aspects they're passionate about.

When I was fourteen years old I did not wait for someone else to pave the way for me to get my voice heard, I just did it, and people listened and it's opened up a whole new world which I am grateful for, and I encourage others to do the same. Shout louder if you want to be heard but always remember we are in this together and no one would intentionally drown out someone else's voice.

It's seen as a massive problem that some go to events and conferences and others don't get invited, and this might be an unpopular opinion but I will say it anyway, some people just don't put themselves out there enough and that's fine and that does not mean that you do not have a story to tell, but just because we all have Type 1 Diabetes it doesn't make us all entitled to do the same things as everyone else, and that's where that analogy comes in.

And it is not fair to put others down for accepting opportunities that are presented to them because I'm sure you would do the same if you were invited.

Yes, organisations could work to be more inclusive and online events could be considered an option for certain things but they do not hold the same value as a face to face event. But the truth is sometimes people are asked to do things because they're the right person for the job or they stood out, and we all deserve that platform we really do. Blogging was my escape, then it became my passion and then it became the reason that living with Type 1 is "ok" but going to Twitter and seeing people refer to blogs as "tedious" and "weak" because you're unhappy you didn't get an invite to an event is wrong.

Do not forget that there are so many things you can do to make an impact, if you are truly passionate then look for ways to help. Volunteering my time at Diabetes UK events is so much more rewarding than any high profile event will ever be, and while I love public speaking, things like volunteering are the things that make a huge directly positive impact on lives.

Another thing we are all entitled to is an opinion, and mine might be just as unpopular or popular as the next person's so continue to speak your mind on social media if you want to, but don't pin it all on people who are doing nothing but trying to do good. And if you are someone who is trying to "intimidate" others on social media then do stop, it only creates a bigger rift. I've never had a personal agenda and would never dream of it, I also never imagined I'd get the opportunities I've had.

There shouldn't be a divide like this, we're all in this together even when it doesn't feel like it, just because one PWD with diabetes is at 10 Downing Street and you aren't or another is at a bloggers event or is speaking at a conference, it doesn't mean you aren't worthy of recognition it's just the way things are sometimes, but also remember that no one gets a free ride, and I hope one day that more people will put themselves out there and can get involved and trust me you can be, where there is a will there is a way.

People can choose to be hostile and fight with each other over who should be where, or we can celebrate one another's successes and look for ways that we can get involved ourselves no matter how big or small. I hope I've managed to get my point across with this post, and I hope to continue advocating and taking up opportunties if they arise but this "problem" also isn't that much of a problem if we just put things into perspective, and there is more to us than diabetes always remember that.

Transitioning to adult services | My talk at the Diabetes UK Professional Conference

This month I was fortunate enough to be invited to the Diabetes UK Professional Conference to talk about my experiences of transitioning to adult clinic and share a platform with Reza Zaidi and Fulya Mehta - two incredible diabetes consultants who do so much wonderful work to improve the lives of those living with diabetes. It was a privilege to speak along side them and contribute to their session on Transitioning to adult services.

The conference took place from the 5th - 7th of March in Liverpool. It was a fabulous experience and I'd never been to Liverpool before, so I was very excited to see a little bit of Liverpool and I even got a photo with the infamous Beatles statue! I'd been to the Diabetes UK Professional Conference before, back in 2016, when it was in Glasgow and I got the opportunity to attend as a Blogger; so it was a lovely feeling to be back at the conference but being a speaker this time it was a little bit more nerve-wracking!

I'm so glad I was invited to speak at the conference, I feel like it's helped me get my mojo back a little bit. I took a step back from diabetes advocacy for a little while but it's nice to be back into it a little bit. I have no control over the fact that I got Type 1, but what I do have control over is what I do with it, and advocating for better health care and a better life for those of us with Type 1 is my little way of taking back control I think. I also just love making a difference, and if my experiences can help other people then that's perfect.

If you want to read my speech I've inserted it below...it's a little bit long, but I hope you stick it out!

Good Morning all, I’m Ellie, age 21 and I’ve been living with Type 1 Diabetes since the age of 11. Thank you for giving me the opportunity to come up here and share my experiences with you all of an aspect of diabetes care that I have come to feel strongly about.

Whilst I have experienced much first-rate care from hcps, both as an adult and especially as a child and adolescent, I feel that the transition from paediatric to adult care in diabetes is often treated as if
turning 18 brings a sudden and complete change in physical and psychological needs. This strikes me as a gross over-simplification of the reality of becoming an adult.

I’ve reflected upon my journey through transition to adult services and picked up some key points and a couple of pivotal moments that shaped my journey to adult services, with comparison to my experience in children’s services, and all this kind of set the scene for the months that followed.

We had a good start, I had a transition appointment with my old consultant and my adult
clinic consultant. As I approached 18 my consultant spoke to me about transition, my team were incredible, and I was more than disgruntled to leave them. An appointment was set up with my consultant at the time and the new adult consultant, this was a good move, it was sort of a “handover” so to speak. It was a long appointment, I’m probably not the most straight forward of cases so there was lots to talk about, and plenty of opportunity for me to huff and puff and express my discontent at this change, but I liked the new team and decided to be open minded and embrace becoming an adult.
But then it all went a bit pear shaped. After the transition appointment I didn’t get another one for 10
months, I had one but it was cancelled, I was told I’d get a new appointment through but it took me
calling and asking why I didn’t have an appointment to get one scheduled. I felt like I’d fallen through the cracks and for almost a whole year felt as though I didn’t have a team anymore.

When I finally got that long awaited appointment it was with a DSN, and at that appointment,
my first DSN appointment in adult clinic, she told me - “We don’t have the facilities to get to
know you” I always say that moving from children’s clinic to adult clinic is a lot like moving from secondary school to university; you go from a place where everyone knows you, you grew up there, and then suddenly you’re thrown into a whole new world where no one knows you and you’re among thousands of others. Children’s clinics are generally smaller, whereas with adult clinics like mine they’re huge, and often crushed under the weight of their own success, I know my clinic is good, I just can’t seem to access the good parts, at my very first appointment the DSN said to me “We don’t have the facilities to get to know you”. I was not expecting her to say this, and while I know her intentions weren’t bad, I think she just tried to set my expectations, and that’s sad, she knew how it was going to be and how things would change for me.

I was on an insulin pump when I left children’s clinic, I was on a “break” but a
pumper nonetheless. My consultant and team in Children’s services were very tolerant of my approach to managing my diabetes, I liked to do things my own way with their support and they accepted this, it was a good approach! I loved my pump, but sometimes I needed a break and so just before leaving children’s clinic I was on a “pump holiday”, but a pumper, nonetheless. I was back on injections during the transition process but struggling. Between transitioning to adult services and my first appointment with someone in clinic I lost my insulin pump. I didn’t know this until I went to order supplies and realised I couldn’t, I had to email the only email I had for one of the DSN’s at clinic and she told me via e-mail that they decided it probably wasn’t the best idea to stay on the pump because my Hba1c was too high. This I understood, I know the reasoning, I know the rules, but what I didn’t understand is why someone didn’t at least get in touch, I know they couldn’t offer me an appointment as they were too busy to see me, but I had barely been there 6 months, had minimal contact and no appointments set up and I just felt betrayed. They made this decision with out me, but I also recently found out that you must see a consultant within 3 months of transitioning to ensure the funding gets transferred properly, I didn’t see someone for 10 months, so I suppose I would have lost it inevitably.

The years leading up to turning 18 and transitioning to adult services, were emotional and hard, big
things happened in my life, my mum had jsut been diagnosed with cancer for a second time, I left sixth form with no idea what I wanted to do with my life, my great nan died just before I turned 18, and it’s safe to say that at 18, the transition age, I was a bit of a mess. So, to me diabetes came last, it was not my priority and I struggled immensely with controlling my blood sugar, I just had no interest in it, I know this of course wasn’t the right thing to do but mentally I was in a bad place, I also found it difficult to properly manage my diabetes in general. This meant that when I had my transition appointment, my new consultant asked me if I was depressed. Again, I know his intentions weren’t bad, but I immediately noticed the different approach, they didn’t have a psychologist at the time, and I was advised to contact IAPT. But I was so down because my life wasn’t going the way I wanted it to, my blood sugar was constantly through the roof, I needed help controlling my diabetes through all of this, through the hard stuff and through generally becoming an adult with diabetes – someone from IAPT wouldn’t understand.

It’s no secret that access to psychological services in adult clinic is not common, I had been seeing a
psychologist in children’s clinic and I knew that leaving children’s clinic also meant I’d have to say
goodbye to psychological support for the time being. I’m very fortunate in that I did get the chance to see a psychologist in adult services, she was newly hired and I was told the wait would be 6 months, but she had a huge backlog to work through – so I didn’t see a psychologist for a year but she was worth it. She is proof that my clinic are good, the fact that they even have a psychologist is something I know is not common in adult services, so I made the most of it. But saying that, how sad is it that something that should be a staple part of diabetes care, in both peadiatric and adult services, isn’t a thing in most places, so an adult clinic that actually has a psychologist makes it a really great place to be…this frustrates me a huge amount - diabetes is more of an emotional burden than someone without diabetes will ever know, when I wanted to curl up in a ball and forget about everything I couldn’t, because I have a condition that if I take my eye off the ball for even a few hours things can go seriously wrong – and the issues that I was experiencing at 17 years old in
children’s services did not disappear when I stepped foot in adult clinic at 18 years old.

I saw the same consultant and DSN’s for six and a half years, in adult clinic I’ve seen a different
person almost every single time I’ve been to an appointment I have a lot of “history” so to speak. So when I had my very first consultant appointment in adult clinic and it was with a consultant I’d never met, a registrar, who I wasn’t going to see again, I was more than irritated. Seeing the same consultant and DSN’s in children’s services for six and a half years was something I valued so much, they knew me, they knew my way of dealing with things and why things were the way they were and I had a really good relationship with them. I’ve seen a different person almost every single time I’ve been to an appointment in adult clinic, and while each of these individuals have been lovely, my appointments turn into me sitting there having to explain myself all over again, to a stranger. I just wondered how I'm ever going to build a relationship with this new team if I barely see them.

At one point my DSN appointments turned into seeing a dietician all the time, I’d seen a DSN once before this, and while I do not doubt the dietician’s knowledge or deny her integral role as part of a diabetes team, she couldn’t help me – she couldn’t help me, there was only so much she could do.

I’ve seen my adult clinic consultant twice and I’ve been in adult clinic for three years, I think I’ve seen a DSN the same amount of times. While this length of time between appointments is ok for some it’s not ok for me. One size doesn’t fit all. And while I don’t feel the need for 3 monthly appointments anymore, I feel like at least every 6 – 8 months would be better. When I do see my consultant I think he’s great, very intelligent and very helpful and really understands the psychological impact diabetes has, but the lack of resources means I never get to see him, at my last appointment he wanted to see me again in six months, I didn’t manage to get another appointment booked in for a year and a half.

I saw my consultant every three months in children’s services, sometimes less when I was 15/16 and a moody teenager who stopped taking her insulin properly and had a HbA1c of 15%. But when I
was 18 and starting adult clinic I still had a HbA1c of 12.4%, in a worse place in the grand scheme of my life than I ever was in children’s clinic, struggling on injections, wanting to go back on my pump, losing my pump, getting my appointments cancelled time and time again, eventually seeing someone 10 months later, completely disengaged with this new “team” and feeling like a lost cause, I fell through the cracks at such an important time, transition, it’s meant to be smooth!

It was anything but.

Transition: the process or a period of changing from one state or condition to another.
I dreaded transitioning to adult clinic before it even began, before the moment I stepped foot into a
whole new clinic for the first time – I was acutely aware that it would be different, and I knew the
change would be something I’d have to adjust to, and I’d have to get to know new people. But you
expect the transition to be smooth, to go without a hitch, but several bumps in the road meant I was
ready to disengage completely by the time I got to my first appointment and the months after, and not
even bother trying. However, the moments I got to see the good in my team, the intelligent, caring
people limited by a faulty system, kept me involved.

In the bigger picture we are all just a number, we’re a patient who has outstayed their welcome in a
paediatric setting; but before I’m a patient I’m a person and I’m complex and real life isn’t as straight
forward as a referral to adult clinic. It’s not a secret that children’s clinics get more funding than adult
clinic, the idea being that they’re supposed to prep you well for adult life with diabetes, but what they
can’t prep you for is the fact that the needs you have don’t disappear when you turn eighteen, and
transition is a gradual process that needs to be nurtured the right way to ensure you get that young
person engaged. Even through my involvement in the online community, I have heard of similar experiences from many young adults, and I also hear from older friends with diabetes that adult care can be very minimal.

There’s lots of good work happening around improving transition with sessions like these. Let’s try and make experiences like mine uncommon; make it the norm to have a smooth transition and an easy process, we shouldn’t always have to lower our expectations because of the fact that like my DSN told me, they don’t have the facilities to get to know you.

I want to feel as supported as an adult with diabetes as I did a child with diabetes and that starts at
transition.

Thanks for reading!