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/?