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HbA1c, just a number?

Do you ever find yourself paying a little too much attention to a specific number?

Your weight? Your distance covered? Milestones reached? Friends on Facebook?

Or, perhaps, your HbA1c, the “lighthouse” of how you’re doing as a diabetic?

It’s easy to put a lot of weight on a number (pun intended!), because it’s something measurable, something you can follow and have a direct understanding of whether it improves or gets worse.

What’s difficult to understand is that these numbers, none of the ones I mentioned above, matter much.

Your weight technically doesn’t matter much, as long as you feel fit and healthy with it. Neither does the amount of kilometers you ran last week, unless you were in a race… Counting milestones only creates an inner stress and pressure to reach your goals faster, harder, more productively. And, friends on Facebook – are they r e a l l y friends…?

I know. This is crazy cakes.

We’ve been told, time and time again, to set measurable goals, and it’s really hard to find ways to measure improvement without those numbers.

So also when it comes to diabetes care and the HbA1c value.

I’ve been conditioned for 30 years to regard my HbA1c as the shining light of how well I’m doing, so the habit isn’t easy to break. Even when I know I’ve done pretty darn well lately.

I had my a-few-times-a-year appointment with my endocrinologist earlier this week.

Driving there (only takes about 7 minutes, but still), I was super-nervous and kept sending little wishes out for a lower-than-last-time HbA1c reading (which was 6,4%).

I got there, peed in a cup, had some blood taken, weighed in and measured my blood pressure. For someone who has a severe case of “White Coat Syndrome”, which is when you get nervous just seeing, being near or even thinking of a doctors office, the last part always seems a little stupid. And it was this time too, because it was through the roof.

I got into my endo’s office and we chatted a bit about life in general, before we got into the whole diabetes thing.

Once again, I was complimented by her on how well I’m doing. This is still a weird feeling to me, after having basically been a disappointment and being scolded for the other 28 years I’ve met with endocrinologists.

She told me that there probably isn’t much more I can optimize about my care without having a lot more hypos. “Watch me” I thought to myself, as I still think I can, and I will keep trying to optimize and improve until the day I die.

Anyway, to the value that every diabetic has been conditioned to regard as a sign of life or death: my HbA1c was 6,2% this time, or 44 mmol/mol.

This is the lowest I can ever remember having during my 30-year career in and with diabetes. I asked my parents, too, and they can’t remember anything lower either.

The fact that I’ve put so much emphasis on it and then receiving exactly the result I was hoping for made me ecstatic. Happy, euphoric and close to tears of pride. In my opinion, with all right. (And I have yet to celebrate this properly!)

After we had discussed some other topics, and I had received all the supplies I needed from their office (making it feel like Christmas every time I go there!), I got into my car and drove off, full of joy!

I got home, told my husband about the result, he gave ma a huge congratulatory hug, and I was so darn pleased with myself. I posted a rarely-seen-selfie  and got on with my day.

Later in the evening it hit me though. I was sad. Despite my excellent HbA1c result. Despite the praise and the congratulations. I felt saddened.

It took me a good few minutes to figure it out, a little EFT tapping and some meditation came in very handy at that point.

I was sad, because that result didn’t mean anything, really.

Fine, it means that I’m reasonably well controlled in my diabetes. It means that I’ve come a long way from where I started a few years ago after a long diabetes burn out, giving me double figure HbA1c’s. And it gives me a little hope for the future.

But it also means that I’m not really awarded in anyway for it (unless I buy myself something pretty, or have a glass of champagne to celebrate). It doesn’t give me a break from diabetes, not even for a minute. It doesn’t stop the poking, prodding and always having to be on alert. It doesn’t mean I can live carefree and forget about everything.

It just means that I’m alright and that my doctor is proud of me. And that I’m technically “pre-diabetic” according to my HbA1c. 

Don’t get me wrong.

I love the fact hat I’ve found my own way and am finally in the position where I feel like I have even the faintest of clues about this whole diabetes thing.

I love the feeling of not being scolded by my dream health care team. And I love that I can say that I’ve reached a new record in my life.

But I don’t think it’s the best idea to put as much of a value as I do on this one value. Especially as there are so many other factors that determine how well I’m doing and/or how healthy I am.

 

What about you – do you also put too much emphasis on one single number? Perhaps it’s your weight? How far you’ve run this week? Or maybe you’re like me and put (too) much focus on your HbA1c?

Diabetes & The Long Run

When you’re first diagnosed with Diabetes, it’s a major shock to the system.

The questions are endless. What do I eat? What medications do I have to take when? I have to inject myself several times a day?! What the what? I didn’t sign up for this!!

But what happens after living with diabetes for a long time? How does it feel? How does one cope? Why doesn’t one just give up?

Technically, this year marks a series of “jubilees” for me and Diabetes.

It’s been 30 years since my diagnosis this year. 26 of those I spent on a clueless treadmill/roller coaster without a mission and without a cause. The last 4 have been the best ones, so far, starting with me radically changing the way I ate. I’ve spent 28 years with around 10 injections a day, 2 years on the pump. 1 year with my BFF Dexter (my Dexcom CGMS).

Anyway, I want to focus on the first one of these – 30 years with diabetes.

Living with diabetes for 30 years is like living with the most loyal companion (or enemy, depending on the day) you’ve ever encountered. It never leaves your side, and you never get even a second to yourself.

It takes a lot to get used to living with it being a part of you. And, because it’s always evolving, dynamic and on the move, it’s sometimes difficult to keep up with it. Oh, you don’t react well to gluten anymore? Ok, let’s change that. No dairy either? Ok, well, bye bye cheese. Caffeine makes you hyper react? Ok, decaf it is. And that’s just talking about a few food things, completely disregarding certain forms of exercise, timing of medications, or reactions to certain situations.

It’s a silent friend that never talks until it screams. And when it does, it screams loudly. Scary lows, annoying highs, and the possibility of losing a limb or your vision.

The awful feelings and the taste of glucose tablets (or orange juice when your life depends on it, for that matter). Lengthy doctors appointments and the endless needles. Hospitalizations. Advice you should have never followed, other advice you should have followed from day 1. To mention a few.

There are so many things that are so bad with this disease. Horrible, in fact. But there are also things I would have never learned if I hadn’t had this Constant Companion of mine.

It has taught me discipline, timing and humility. It has shown me that life is here to be lived, not to be wasted. Life is fragile, don’t take it for granted. It has taught me about the importance of self-love, no matter what happens. It has helped me see how strong I truly am, “this too shall pass.” I’ve realized that being stubborn isn’t always a bad thing; it can even help you sometimes.

So, what keeps you going throughout the years?

You simply have to. You have no choice but to buckle up and try to enjoy the ride as much as you possibly can. Until that cure comes “in 5 – 10 years”.

Nothing gets better by ignoring diabetes. Trust me, I know.

The mental part of living with diabetes is difficult from time to time. There’s no point trying to sugar coat (ha!) that.

In my teenage years, I didn’t want to have diabetes. I was angry, disappointed at life and everything felt like a huge burden without any light in any tunnel.

Crap endocrinologists, the wrong advice and general teenage turmoil made me ignore diabetes “for a while”.

This “while” made me loose almost everything; my parents, family, friends and myself. And it almost cost me my life.

“Nothing works, why bother?”, I remember thinking. But it didn’t make diabetes go away. Rather the opposite.

Time and again diabetes would show up, scream loudly at me for ignoring it and smack me straight in the face. I was in the hospital from passing out on the street, and other times because I was in a diabetic ketoacidosis (DKA), close to death. And everything in between.

Once I got my proverbial shit together, it still took me years to get back to the excellent care my parents had once given me. Many, many trials and errors, wrong paths and terrible turns followed. As soon as I finally thought I had a foot firmly on the ground, the carpet was pulled out under me once again.

Luckily, I managed to find a road leading towards my path.

Diabetes IS a part of you, whether you want it to be or not. And it’s up to you to find a way to work with it in a way that works for YOU. It has to become second nature to you to check blood sugars, (gu)es(s)timate carbohydrates in a meal, take your medications and to accept your (new) reality. Not to mention finding the small things that make you feel better.

For me it was a long-winded road, the batter part of 26 years, to get to the point where I am today. And I still regularly find out new things about my life with diabetes. It’s a disease that keeps you on your toes, that’s for sure.

You cope because you have to. You don’t give up because it’s not an option. And just for being in this position, you deserve a huge medal! But along the way, you may just find a wonderful path through it all that is made just for you.

What are your biggest struggles and questions when it comes to diabetes? Let’s discuss in the comments below.

Doctor’s Praise

Have you ever had a doctor’s appointment during which you get praise from said doctor?

This was a completely foreign concept for me until recently, despite having lived with Type 1 Diabetes for 29 years.

But as I’ve managed to gain better insight into the illness that co-habits my body, and therefore slightly better control, there have been more and more positive encouragement coming form my health team.

Just a couple of years ago, I would always be scared of going to the doctors, any doctor I have (and I have a few).

Scared of the results, scared of what they might find this time.

Scared of being told off, scared of being disappointed in myself.

Scared of being hurt and a failure. Scared of the amount of work that lay ahead of me.

Because that’s what it had been like all my life.

Every doctors appointment until recently, had been one of disappointment, hurt, even tears, and after, not-being-bothered – because why bother if I always get the same sh*t shoved at me by the doctors?

Let’s not turn this into too much of a sobby victim story though.

About a year ago, when I had finished the education for my pump with my lovely diabetes educator, she told me I was one of her best patients.

After having grown up with the notion that doctors (and nurses) are equal to the evil spawn of something ugly, I was stunned for a second.

And then filled with love. Love, gratitude, and appreciation.

Not necessarily for diabetes, but rather for the advancements I had made by that point.

It was probably my first (and to this day, only) time I’ve performed a little one-man boogie in a doctor’s office.

It’s incredibly what a little doctor’s praise can do!

It spurs you on, keeps you going and at least it helps me when the going gets extra tough (which it inevitably does, considering it’s diabetes we’re talking about.)

And then today (aka the-second-time-my-jaw-dropped-through-the floor-at-my-doctor’s-office), at my check up, my doctor goes to me: “you’re one of my best patients. You seem much more relaxed about diabetes now than when I first met you.”

Wait? Did I hear that correctly?

My immediate reaction was to ask if she could put it in writing. She answered that she would if I really wanted her to.

To the point: yes. That might very well be true that I am, as I don’t know a single of her other patients. And I’m super grateful that I’ve managed to get to where I am today.

But I don’t think she has any idea of just how much work I’ve put into gaining this clarity I now have of diabetes. Which doesn’t, by any means, I’m anywhere near full understanding of it. It just means that I’ve made some progress in the recent years.

A few examples:

I’ve had to say no to things I really wanted to do because my blood sugar wasn’t cooperating.

There have been some late nights…

,,,,and early mornings…

…including wake ups in the middle of the night.

A copious and endless amount of (painful) finger pricks, injections, pump site insertions and CGM sensor insertions.

Carrying medical equipment around, big handbags have been of benefit. My shoulders and neck muscles do not agree.

Snacks, snacks and more snacks.

A huge part has been the mental work I’ve done. Truly coming to terms with diabetes is not an easy task, and is usually completely overlooked by the medical community. I’ve meditated for hours, and now I notice a difference in my blood sugars when I don’t do it! Stress is closely linked to blood sugars, so it’s really important to find ways to release stress. A newer tool I’ve been using is EFT tapping to try to get past the bigger concerns regarding diabetes.

Eating well and according to diabetes, which, for me, means very low carb.

Having to play my own pancreas. On the outside. With zero communication from the other organs that play a part, like the liver, for example.

Drinking lots of water. I’d be so rich if I had a penny for every liter of water I’ve drank!

Exercising and trying to figure out how it works. Sometimes exercise makes my blood sugar high, sometimes low, sometimes the same and sometimes the effect doesn’t come until 12 hours later (depending on how strenuous the exercise was). What on earth do I do with my basal settings?!

Speaking of which, figuring out everyday things like flights, how to eat on the road, restaurants, walking too much (and at irregular times!), drinking alcohol, combining an outfit to fit medical devices as well as how to solve the caffeine question, have all been part of the journey so far.

And that’s just to say what it has taken so far. It definitely doesn’t mean that it will always stay the same. Diabetes is a very dynamic and constantly ever-changing partner to have by your side.

But, this is where it really pays off to have a carefully selected and well-researched health team.

Because even if they don’t know exactly what you’re going through, they’re willing to understand and make arrangements for you.

 

Oh, yeah, my A1C? 6.4% today.