Tag Archive for: blood sugar

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.

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Lonely Diabetes?

Plus one is the loneliest number.

And my constant companion Diabetes knows exactly which buttons to push to make me feel lonely, alone and isolated.

It’s the time of family gatherings, meeting friends and spending time with those you love.

But if your (involuntary and unwanted) BFF Diabetes doesn’t play along, it doesn’t matter who else is around you.

This post is NOT about diabetes making you different from other people or that you have to things that are usually associated with being a drug addict, like shooting up and (sometimes) being paranoid.

It’s about feeling lonely although you have your best supporters, your true fan club, around you.

The other night, Dexter (my Dexcom CGM system) woke me up from my hazy sleep.

He had just buzzed 3 times, and because I wasn’t quite with it, I couldn’t remember what 3 buzzes meant – was I high or low?

I had only gone to bed 2 hours prior to this (quite rude) wake up call with a great blood sugar level, so I wondered which way it had gone wrong? 

Dex said “LOW”, below 4.0 mmol/l (72 mg/l). I took out Doris (my OmniPod and trusted ally) and checked my blood sugar; 2.1 mmol/l (38 mg/l).

Nothing was making sense to me at this point; I was sweaty, my head fuzzy, I didn’t recognize where I was or what I had to do next.

I told myself I had a pretty low hypo for being me and that I needed to get to those glucose tabs faster than lightning, right after temporarily lowering the basal on my pump to -85%.

In my mind I gracefully climbed over my husband in the sofa bed we were sharing and jetted straight for my suitcase, where I had packed the glucose. (We were on a trip, staying with fantastic friends)

But in reality I was probably half-suffocating my husband, stumbling around like a local drunk and made more noise than I could ever realize.

Anyway. I sat down on the floor to eat some of the glucotabs. The slightly chalky texture and the acidy taste of them only intensified my symptoms.

During some of my lows I need something to chew on after the glucotabs, something that won’t help the hypo, as it otherwise overshoot. But just the feeling to keep chewing makes me feel safer in an unsafe situation.

I found, again in my mind very gracefully, a bar of 85% chocolate in my handbag, and started munching, instantly feeling a little bit better.

To I keep awake, I tried to play some simple games on my phone, none of which were making any sense to me. Playing cards, letters and colors were all a big mumbo jumbo, although it’s actually 3 separate games on my phone.

In this very moment I realized I was feeling really lonely. 

This was despite having my husband snoring right next to me, and some other people sleeping in the same room. And I knew I could wake any of them up to keep me company and make sure I survived yet another hypo.

But I didn’t. Just because I’m not allowed to sleep right now, doesn’t mean others aren’t either, I thought to myself.

So I kept to my incoherent gaming, but couldn’t shake the feeling of being the loneliest person in the world in that moment.

As soon as I saw the number on my dexcom starting to go up, I put down my phone and went back to a hypo-sweat-drenched-sleep.

A few hours later, waking up with the biggest hypo-hangover ever, it made me feel lonely again.

I quickly resorted to some victim mentality thinking with thoughts like “why me?” And “no one understands me or what I’m going through or what it all feels like”, aka Loser-ville thoughts.

While I might have been right after yet another time with diabetes trying to kick my ass, I can’t forget what it has thought me about life.

A few of the useful and positive examples are: Being alone. Maths. Thicker skin. Acceptation. Pain. Fending for my life. Handling disappointment. That life is precious and frail. That I’m not invincible. Gratitude. Appreciation. Friendship. Health. Healing. Happiness. And, above all, the importance of Love.

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My 6 Bad Diabetes Habits

Everyone has bad habits.

Whether they’re diabetes related or not, I bet you have your bad habits too.

Just as I have mine.

Just because I do what I do, helping people with diabetes to feel healthier and more confident in their own care, it certainly doesn’t mean I’m perfect when it comes to my own care. Not even by a long shot.

But I didn’t lure you here to complain about bad blood glucose readings; I don’t mean that kind of perfect (mainly because I think that’s a complete myth – you can’t be a perfect diabetic.) I mean habits that could be improved, that I’ve always been told I “need” to do, but, for some reason, don’t.

Note: I’m not talking about not taking insulin or not measuring my blood glucose; those are givens in order to have an ok level of your self care.

I’ve thought of 5+1 bad diabetes habits I have, and only higher powers above know I have plenty more non-d-related, too.

 

1) Never changing my lancet

I’m fairly certain this is something pretty much e v e r y person with diabetes is guilty of.

I just never change the lancet in my finger-pricking device.

Why? Because I’m lazy? Probably. But also because I just never think of it. There are so many other things I keep track of every day, and changing a lancet is just not on that list.

 

2) Throwing away test strips

When I’ve checked my blood glucose, I put the used test strip into my meter case (I use a small pouch instead of the supplied cases, I think they’re painfully ugly, and diabetes is sometimes ugly enough without having to be reminded every time I check my sugars, am-I-right?), to just forget about them.

When I finally DO empty my case, it’s because things don’t fit into the case anymore. Here is a video of me emptying my case, it’s almost like snowfall at Christmas!

Again, why? Good question. Secret hoarder? Saving up for winter? Hiding something? Your guess is as good as mine.

 

3) Suspending pump for hypos

When my blood sugar goes low, unless it’s superlow, I simply suspend the insulin delivery on my pump rather than eating something and just put on a minimal basal dosage until I’m ok again.

So far I have never forgotten it off, perhaps because she (Doris, my insulin pump) reminds me angrily when I do?

 

4) Mistakes in carb counting

I have to confess I don’t always count every single carbohydrate in a meal. (Unless I write how many carbs it is on Instagram, then there might be some severe googling behind it…)

This has gotten me into BG-trouble in the past, but a lot less so after I started eating low carb meals.

Sometimes I just didn’t want to see, realize or recognize just how many carbs I was eating in a meal, which is another problem solved with eating low carb meals.

Why? D-Nial. Not just a river, peeps.

 

5) Not being open enough about diabetes

Having shared a picture of myself in a bikini and revealing the names of my medical gear, have been huge steps for me.

I used to hide every aspect of my medical condition(s).

I’m getting better at this though, and am starting to enjoy sharing more and more of my d-experience with you and my clients.

Yet, every time someone else is hiding something that is such a big part of their lives, I almost get offended. If we’re ever going to get a bigger public understanding of chronic conditions, like diabetes, it’s up to us to share how it is to actually live with it.

 

+1) Not eating 60% carbs with every meal

Simply because I don’t feel well when I do so. But I was told for 26 years that this was an absolute necessity to diabetes management.

Well, turns out it isn’t.

 

 

These may seem pretty harmless to you, and whilst you’re probably right, they are things I want to get better at in my self-care. If I don’t take the outmost care of myself, no one else is going to either.

Sometimes it’s the smallest thing that throws the whole thing over. This probably wont be an unchanged lancet or not emptying the used test strips out, but it could be letting a hypo go too low or miscalculating the carbs in a meal.

 

What are your bad habits? Even if they’re not diabetes related, share them below!

 

 

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