Dear Pancreas,

Dear Pancreas,

I need to start out by explaining how absolutely disappointed I am. You are completely fucking useless. I often wonder how much you weigh and figure the burden of having to carry you around. You had one fucking job and you failed.

This letter is coming to you exactly two years since I was informed you decided to quit your job, with little notice and no regard for the human being you had inhabited for thirty-six years. How very selfish of you.

The 9th October 2018 is a day I’ll never forget, your inaction won’t allow for it.

I figure you died in late August or September 2018, because I lost so much weight out of nowhere, felt knackered beyond belief and had a persistent stomach ache. I’d just started a new job and my colleagues tried to reassure me it was a simple case of stress. It’s a shame you’re not closer to my brain, because then you’d know that I am a constant ball of stress, always have been. So, I knew deep down it wasn’t the reason for these symptoms. Luckily, or unluckily, whichever way you want to view it, I was already seeing an Endocrinologist because of your random little outbursts every now and then. You really are a truculent little bastard.

At the end of September 2018 I sat in the endo’s office and explained what was happening. He chastised me for not going to my GP. He feverishly cried out that this medical problem would be nothing to do with him. He hit me with a barrage of health questions, “When did you start smoking?”

“When I was about eleven or twelve.”

“I didn’t think you were allowed to smoke at that age.”

“In my life there’s been a lot of things I’m not allowed to do, alas I have done them.”

To that end, he ordered a chest X-ray and a load of bloods which pointed to the fact he thought I had the big ‘C.’ But, I knew it wasn’t that.

On 9th October, I sat in my office at work and literally felt as though I may die. I was wiped out, exhausted and my stomach ached to the point I wanted to rip it out. I called the GP, because the endocrinologist had washed his hands of this ailment which has nothing to do with him. There were no results. They’d gone back to Dr Not My Job. 

Now I really would have to sneak in through the back door on this one, I’d hate to bother a Doctor when he said I should have gone to the GP. I’d have to ask a secretary, whatever. I called them and they said he’d ring me back. No fucking backdoor then. He was going to be mad I was making him do the GP’s job again. I figured I’d frequent the smoking shed at work because I’d be waiting for Dr Not My Job for quite some time. I’d possibly even be dead by then.

Five minutes later I arrived back to my desk to five missed calls and a frantic voicemail from Dr Not My Job. Fuck. My already aching stomach felt like it suddenly had a few dozen bricks dumped into it and quickly plummeted into my boots. I called back straight away, barely being able to speak his name due to all consuming fear of what he was about to tell me.

“Are you okay? How are you feeling?”

This was not good.

“Erm, tired and I have a stomach ache.”

“Lucy, you have diabetes.” His voice was strangled as though he was having to deliver the news to his nearest and dearest, not a patient he’d met three times at the outset. This distressed me further, because boy did he sound worried. He ordered me to the hospital right that minute.

I stood there, I had been sitting when I rang him back, but I must have leapt off the chair at some point but I don’t remember when. After I hung up, I must have screamed or done something because I had another doctor in my office, the psychiatrist I work with. That’s when I heard the words for the first time, I heard them many times after and each time they have left a bad fucking taste in my mouth. “At least it’s not cancer.”

Now, don’t get me wrong, in no way am I attempting to undermine cancer. It is a horrible, horrible disease. But, can you ever imagine telling someone who has just found out they have a life-long disease with more associated complexities than branches of a thousand year old oak tree that at least it’s not something completely unconnected? Imagine if someone told me they had cancer and my hand flew to my chest and I exulted, “Thank God it’s not type 1 diabetes!” I figure that would go down like a fucking lead balloon and my name would be dragged through the mud. Yet, everyone found it perfectly acceptable to say it to me. This was the first thing to make me angry after you packed up, bastard. Do you know what anger does to my blood sugar? I hate you.

I digress. I arrived at the hospital (after my mother said, “At least it’s not cancer,” as I was sobbing on the way to the hospital and my boyfriend hung up on me without letting me tell him I was actually dying.) There waiting was no less than a junior doctor, a trainee doctor and two diabetic nurses. If I wasn’t shitting myself before, I was at that point. I was ushered into an office, had my finger pricked my blood sugar was 28 and I had ketones of 2.9 (this is m/mnol.) Even Dr Not My Job had called into the consultation and was having everything relayed to him over the phone.

Now, it took me quite some time to figure out why there was such a fuss, surely people are diagnosed with type 1 diabetes without quite so much fanfare? Right? Ahh, but I’m quite sure they didn’t go to a whole endocrinology consultant who is a diabetic specialist, describe the symptoms of diabetes and were subsequently told to fuck off in the politest of ways, did they? I’m quite sure Dr Not My Job was clutching his GMC number in his cold, terrified, little hands for quite some time after that. In someway it’s really nice to know that at least one person was really fucking glad I didn’t die of DKA, even if it was for less than honourable reasons. The day after my diagnosis I had to go back to the hospital and he came to see me and said he’s never in his career seen a person go from reactive hypoglycaemia (that’s when you were being a little bitch) to type 1. Not ever. So, I’ll add medical fucking mystery to my list of shit I’ve done then, shall I?

In all fairness, people are vindictive and want someone to blame for everything that happens to them. I’m usually no exception to this. That said, I honestly for the life of me didn’t know what the fuck was wrong. My brother has lived without his turncoat, mother-fucker of a pancreas for years. I should have known you’d fucked off on a world cruise never to return. But, I didn’t think of it once and to be honest I thought I was too old. Also, I’ve always been really thirsty…especially for beverages of the fermented grape variety. If I, the Queen of know-it-all, didn’t know, I wouldn’t expect anyone else to either. 

So then, there I was with all the gear and no idea. I cried and cried for a week solid. This wasn’t helped by the little bitch in the pharmacy in my doctors surgery who refused to give me all the stuff I needed, including my insulin, because I needed a medical exemption certificate which takes four to six weeks to arrive. So I’ll just go home and die then shall I, twat features? I got her to hand it all over in the end but that wasn’t before she was so rude to me in front of lots of people and truth be told, I just couldn’t hack anything else.

I was a wreck. I wanted you back. I just wanted you to do what you were meant to do and stop pissing around. But, I knew you weren’t ever coming back.

I went through the stages of grief I can only see now. 

Anger was most definitely the first, and it rears its ugly head time and time again. It’s usually other people and how I feel about having you gone which causes it. It can be a colleague sending another colleague a ‘get well soon’ card or a bouquet of flowers when something tragic has happened and how in my time of lying at rock bottom I didn’t get a thing, not even a teaspoons worth of sympathy. It’s clear to me no-one understands even for a nano second what I went through and how dark those initial days, weeks and months were for me. I am a person who emotionally vomits. I can’t keep it inside. It’s obvious I feel really sorry for myself and therefore no-one else feels the need to. It’s only diabetes. I can’t help thinking that maybe if people showed a bit of empathy then perhaps I wouldn’t, still to this day, feel so angry that you left me. Alas, here we are.

Denial. Well, I came to terms with the fact that you had gone and were never to return to your fully fucking functioning self. I never woke up and thought, this is bullshit, it’ll just spring back to life and laugh, saying, “Fooled you, sucker!” No, my denial was much more dangerous than that. I’d treat myself to days of pretending I didn’t have type 1 diabetes. I wouldn’t test my blood sugar or take insulin. I didn’t get over this until April 2020, when during the COVID-19 lockdown, I went into DKA with a ketone level of 8. That was half a day of not taking insulin. Granted, I did lie on the sofa eating a packet of biscuits. However, when the stark realisation a packet of biscuits can and will kill you…well, it’s a cruel world. Funny, I only realised something was wrong when I couldn’t finish my cigarette because my respiratory system was shutting down. I’ve never done this since, and unless I’m feeling suicidal, I’m not likely to either. It was fucking horrible.

Depression. I lived most of my teens and twenties with crippling depression. In comparison to that, I guess this is nothing. It’s there, but in a different form. I can’t sit still, can’t stop to think about anything other than about the next most pressing task on the list. I don’t even really like myself or have a compliment to give to myself like I used to. I never feel attractive anymore. Especially not when I see what not having you did to my teeth. I mean, what the hell is that all about? Happiness comes in fleeting moments rather than being a state of mind. You know what? I just feel broken and damaged and I’m not sure that will ever change.

I dodged the bargaining. I know there was nothing I could have done differently to have kept you going. Or maybe I’m still in the stages of grief and this will come later? Who the fuck knows? Not me.

Maybe there’s a grain of truth in what I said because I haven’t reached the acceptance part yet. I mean, I accept you’re gone and you’re never coming back. I accept I will have to do your job myself. I accept I have to play a constant game of chess and be on top of everything lest become ill very quickly. I accept I’ll have a lifetime of insulin and blood monitoring. I accept the overwhelming feelings of envy when I watch someone put food in their mouth without having to make a ton of decisions before they do it. I accept all of that, but I can’t accept and embrace this. I can’t feel like some people feel about how type 1 changed their lives for the better, and some people really do feel like that. I’m not one of them.

I hope next year, when I write my annual letter to you, I might feel a bit better? But, for now…

With sincere hatred,

Lucy

Diabetes Week – The highs and lows.

Today marks the end of diabetes week, in the UK at least. I have been following #thebigpicture on Twitter and reading some inspirational post from those also living with the disease. Here’s my big picture.

The 9th October 2018 is a day I’ll never forget for the rest of my life. 

Only a few weeks before that date I attended an endocrinology appointment for a whole other issue, Reactive Hypoglycaemia. This condition is when your body sparks a chain reaction and releases too much insulin approximately four hours following a high carbohydrate meal (100 grams of carb or more.) Much like diabetes this condition has no known cause. My brother was diagnosed with type 1 diabetes (T1D) in his early twenties and I thought it was odd that I seemed to have something which appeared to be the exact opposite. That condition seemed to be very settled, though in a bid to avoid the GP surgery I informed the endo I’d lost a lot of weight with no known reason. 

He chastised me for not going to the GP, told me this would be nothing to do with his department and ordered bloods and a chest x-ray which told me he suspected cancer. He said he would order my results to be returned to my GP surgery and not to darken his doorstep until something changed. Oh, boy, little did he know…

In tune with my body and having watched my grandfather die of lung cancer, I knew in my heart that wasn’t the issue and looking back it should have been obvious. I was taking two glasses of water to bed and still craving more. Also, everything I put in seemed to put in came back out. I’d suffered huge weight loss, a constant tiredness with aching and stomach pain. Also, I was thirstier but I really didn’t notice it. 

A week later, I felt like hell on a stick so I called the GP in search of the test results only to be informed the results had been sent back to the endocrinologist. I called them next and explained. I got the usual, “We’ll have them call you back.” I decided I’d be waiting a while and left my desk. I returned ten minutes later to see five missed calls and a frantic voicemail from the endo. “Oh, shit.”

He could barely tell me the news I had diabetes and told me to go to the hospital right now. I totally crapped my pants and sobbed all the way there. It didn’t get any better when I got to the diabetes clinic to see two doctors and a nurse all lined up waiting for me. What happened over those few days was a whirlwind of information being slung at me like mud, with only a little sticking here and there. The endo said he’d never known anyone to go from having Reactive Hypoglycaemia to T1D. So, there, I’m a freaking medical mystery. 

I went home and cried and cried for days upon end. More people than I care to tell you actually said, “At least it’s not cancer.” I mean WTH? Who would say that to someone who was just diagnosed with an incredibly difficult and life-long chronic illness with so many possible combinations of complications attached? Because, oh yes, I was about to break out in celebration at any given moment!

I had trapped myself in a bubble and knew I had to deal with it. Hard shit, right? I have it, now get on with it…

What makes living with T1D harder is other people and what they think they know.

“Should you be eating that cake?” It’s safer for me to eat the cake than it is for YOU to be asking me if it’s safe for me to eat. Obviously, cake isn’t exactly good for anyone and eating cake, providing the correct dosage of insulin is taken, is no worse for a T1D than anyone else.

“You’ll have to massively change your lifestyle now, won’t you?” That’s more T2D, because lifestyle changes for the vast majority means they can possibly reverse the disease. It was sad when my GP sent me a leaflet telling me to exercise more, lose weight and cut carbs from my diet. Lose weight? I was already fast approaching being underweight and I believe the leaflet was geared for a T2D. My lifestyle changes amount to constantly chasing my tail and playing a blood glucose level game of chess, one which I still frequently lose. 

“You’re too old to have T1D.” This has been said many times. Most disappointingly by another T1D at a writers event who helpfully diagnosed me with type 1.5 diabetes or Latent Autoimmune Diabetes of Adulthood (LADA.) It was surprising to me just how quickly that lady became a qualified endocrinologist. I mean, it usually takes a lot longer than a few moments of history to come up with an accurate diagnosis, right? 

LADA is a condition which appears to straddle T1D and T2D. Initially it can usually be managed without insulin. It is also slower to progress than T1D i.e. months instead of weeks. To be clear my condition was rapid onset requiring the immediate treatment of insulin and with ketones present, in other words T1D. Though, it is most certainly true that the vast majority of patients are diagnosed before the age of twenty-five, there is still a small percentage who develop the condition later on in life.

“I bet it’s harder for you than it would have been if you got it as a child?” Hell no. I’m glad and thankful for the thirty-five years I had without it. 

“You don’t look like someone who should get diabetes.” Being overweight is nothing to do with T1D, no one is actually sure how it happens. Being overweight is also somewhat of a T2D myth, also. 

So, there we have it. If you find out someone close to you gets it try patting them on the shoulder and say something along the lines of, “This must be pretty crappy for you. I’m here if you need to off load.” I’m sure that would work much better! 

So, as a sort of diabetes week gift I got this nifty thing! It saves me from having to draw blood five to ten times a day! So, that’s always good. Just scan the sensor and you get a reading. It’s literally the best and worst thing that’s ever happened to me because now I know practically everything food does to me! Seriously though, I’m pretty sure the Libre Freestyle will be an absolute game changer. 

Excuse the poorly applied holding tape…LOL

In other news, this month’s lucky newsletter subscriber has the chance to win a signed paperback copy of Falling into You, this lovely bat bangle and a kindle copy of Falling to Pieces for those that haven’t read it yet! Sign up here: http://bit.ly/ltkellynewsletter

Also, I’m involved in a $100 Amazon gift card giveaway which you can enter here: https://www.rafflecopter.com/rafl/display/bde4137412/?