It’s been a tough year for many of us.
The world, what we value, how we see the future, jobs, the economy, sport, social activities, health etc have all been affected this year by Covid-19.
This piece was written to focus on the positive, and is focussed on gratitude 😊
Moving on to where we are now; Diabetes month!
Throughout the years I’ve seen people post images of how many injections they’ve had to endure over their lifetime, images of libre scans, hypo treatments, Hba1cs, the DKA and diagnosis in hospital, how people have overcome their diabetes challenges and all those additional things we have to endure…..just to function everyday.
This year I’ve had a think about what’s important to me, what has helped me keep ticking, year on year, and ultimately has led me to meet up with, and work with some of the most inspiring people I’ve ever met.
The story begins a few years back, sometime in 2017. I had a decent job, life was great on the outside, my diabetes control was awesome, but I was, at the time, not feeling good inside. There were two parts to why I wasn’t feeling great, one was diabetes related.
I was struggling with diabetes burnout. It was something I never knew existed as I’ve had t1 since the age of 2.5, and so not known what life was like otherwise. I guess when “not being okay” becomes a routine, it ends up being normal.
I’d figured out through my understanding of medicine and pharmacy, how rapid acting insulin worked. The bottom line was that I could get away with measuring my sugars less than a handful of times a day, guesstimate doses extremely well, have limited hypos and have an a1c of below 6.5. I could manage exercise well and only really struggled when I went out for a three course meal and desert at a posh curry place.
I couldn’t really see the point of bothering really, even my hospital appointments were pointless. I’d turn up, be asked for my diary (which didn’t exist), someone would have a proper go at me for a bit, then open up my record.
After this point they’d take some time to double check my hospital notes, scroll through my history and say well done. I often felt it was more out of shock than praise. That was it. No “sorry” for making me feel like the smallest thing on planet earth, no “is there anything I can do for you?”, no “how do you manage to dose”, no “how are things?”. Then I’d get an appointment a year later and rush back to work.
One time at work (I work as a hospital Pharmacist) I had a brief discussion with a dsn about care. She asked where my care was and I mentioned the hospital. She asked whether I thought about moving my care to my workplace. I didn’t know this was possible. I thought about it for a bit, and concluded that it would be hugely beneficial as I wouldn’t have to travel back to work by train, saving about 1 hour of my time, once a year.
So I worked really hard to move my care over. Contacted the GP, my DSN and after a while, I got the appointment notification in the post.
A few weeks before my appointment, I was working in a GP surgery, running a clinic that aimed at preventing blood clots. A routine patient came in, mentioned that they were really worried at the time as their sibling was unwell. They lived nearby and asked if I could do a quick blood test for their sibling, who was also part of our service. I stated that I’d do their consultation, and if I had time, would look into it as I had other patients waiting.
Later on, I read through the sibling’s discharge summary and was shattered. There was a lot on there about poor compliance, complications of diabetes…….it was a mess. I took the kit I needed and headed to the home. The person was in an awful state. I took the blood test needed and they used the blood to test their sugars. I could tell this wasn’t going to be good.
They were throwing up, dehydrated and their sugars were 17. It was a bad mix. They asked for advice and I couldn’t give any, as my clinic wasn’t a diabetes one. It really broke my heart, but you have to be professional. I advised they seek medical attention, and left. As I got back to the clinic, I realised I forgot one of my monitoring devices. I headed back to the home and an ambulance was there. I got the device, wished them well, headed back to the clinic, tidied up and went home.
There are times in my job I experience these things and often ask myself many questions. Most of them are “Why not me?”, “Why does diabetes lead to so many bad outcomes?”, “Why do I find people in situations I’ll probably never find myself in?” and it usually ends up with “Why bother?”.
Afterall, it’s a lot easier hiding from a condition, not having to think about it, than grinding your way through your daily routine only to be seeing others suffering, with you not having the ability to influence or change their outcomes in a positive way. That stuff is soul destroying, but I guess at the time I couldn’t see any way to process that in a positive way. I thought, “who would understand, and who could, if they would understand, be able to do anything about it?”
I guess weeks went past, and I cared a little less, it gets better from here onwards, promise!
So I turn up to my appointment, expecting the same response. Hopefully this year, a little quicker as I won’t have to travel back to work.
So I get called up, knock on the door, open it. “Hi can I come in?”. “I haven’t had a chance to read your notes yet….do come in.”
From then onward it was quite an interesting consultation:
“Where’s your diary?”, “I don’t have one” (expecting a massive lecture/some condescending remarks at this point….).
“So how do you monitor?”, “I dose according to how I feel” (probably the first time in years someone has actually taken the time to ask the question, rather than judge straight away).
Usually I get a sarcastic smile or a brief laugh. Instead I got a look of someone who was genuinely interested, trying to take a moment to understand.
I felt bad at this point and decided to pull out my phone to show a pic of a day I had with a libre, showing a full 24 hours without a sugar over 9mmol/L.
“Not a single sugar over 9?!”, “Yeah…” (I couldn’t really be bothered about a conversation at this point).
At the time I just wanted the consultation to end and go back to work. The checks (though understandably important), were just a tick box exercise of me. Nothing ever changes, so I decided to answer all the questions with short answers. It was the quickest way back to work, and the quickest way to forget I had a chronic condition to manage.
Towards the end of conversation, doc was like “Have you ever thought of seeing a health psychologist?”
Again, I just wanted to be out as quick as possible so decided to ask for their recommendation and then say “can’t be bothered, can I go now?”
To this day I will never forget what happened next. I asked “What would you recommend?”
“I’m not going to recommend anything, here is some information.”
I was stunned into silence I guess, and didn’t know what to do next. The freedom of choice is one thing, but it’s extremely powerful for a clinician to be extremely non-judgement. To understand the dark places a chronic condition like diabetes can take you is something you can’t really learn from a book, nor pick up from experience; you have to have a personal connection with diabetes to do that.
“Do you have diabetes?” I asked, trying with all my years of having t1, to figure out how someone could pick up so much from so little information given.
“No I have a relative and growing up…….”
For the first time in years, I had a meaningful conversation about t1 with someone. I was still demotivated, and managed to negotiate a yearly appointment instead of a 6 month one. Doc was still okay with that, which was really nice. 😊
I thanked them for their time and went on my way, doc even managed to convince me to see the DSN and dietician at a later date.
After that point I thought to myself, there must be some “good” out there. Over the next few months I searched for diabetes groups online, attended some in person meetups and actively searched for some diabetes stuff.
I even went to the health psychology appointment and it did help put things into perspective.
A few months later I went to a diabetes tech event where Chris presented how the dexcom had helped him manage his sugars with sport. I caught up with him after and said “I think you should start a diabetes football team.” He was like, “There is one!.” 2 years in, it’s had a massive impact on people across the country (all the way from the Isle of Wight to Scotland!).
It’s truly changed some people’s physical and psychological health – for the better! There’s even a local London team and every day it’s growing. It’s also got so much more to offer too! This is a must watch video if you want to find out more!
https://www.youtube.com/watch?v=19T9M5944E4&t=6s
I even turned up to the annual diabetes picnic in London. This is where I met Tim Street and learnt about looping. What an amazing concept I thought. This eventually led me to building a loop system, making managing diabetes slightly less of a burden. I’ve seen the #WeAreNotWaiting movement take huge strides to making t1 safer, more manageable and less psychologically draining.
I also joined loads of T1 facebook forums and have seen so much positive support, and positive change coming from them. A big shoutout to Louise Troubridge, who helps to effectively manage the “Type 1 diabetes uk” facebook page. It’s got over 8,000 members! 😮
My favourite facebook group (sorry to disappoint Louise!) is “Libre line art”. Do have a look as you don’t need to be a facebook member to appreciate it!
There’s also the amazing “GBDoc” (Great Britain diabetes online community) on twitter, who are never far away to provide help and support if you tag “#gbdoc”. They even hold insightful and entertaining “TweetChats” on Wednesdays at 9pm. Follow ”@GbdocTChost”
Furthermore, this year I’ve fasted a whole month for the first time in my life (see my 30 day graph below). A huge thank you to Dr Sarah Ali (@AliRacaniere) and Dr Sufyan Hussain (@sugarydoc) for making this an achievable reality, despite Covid and it being my first ever attempt!
I feel really good to get that off my chest.
Just remember you are not alone! Sometimes it takes a human to just listen and “try” to understand. I know this year has been extremely tough psychologically, financially and socially.
Reach out, know that you’re not alone, bounce off people, celebrate the small wins, take it one step at a time, love yourself, be grateful, there is a lot of good in this world and I’m thankful I’ve found it when I needed it most.
I dedicate this post to my awesome endocrinologist Dr Karen Anthony, and my now, unfortunately retired 😢 DSN and dietician; Susan Olive and Janice Mavroskoufis.
Sometimes you just need to take a step back, listen, be non-judgemental and “try”.
