Maybe you’re planning a trip soon and would love a travel checklist for diabetes?
(I made you a travel checklist for diabetes below, make sure to check it out!)
What is necessary to bring along on a long trip with diabetes?
Sometimes I feel like diabetes just has it’s own luggage to bring along, physically as well as emotionally.
The emotional luggage we’ll have to discuss another time, because this time I want to talk about the physical luggage Diabetes brings along. Especially when traveling.
As if packing for a trip isn’t stressful enough (“what shoes should I bring?”, “does this dress go with that jacket?”, “what make up should I bring?” and “WILL IT ALL FIT IN MY BAG?!” – you get the point…), as an added bonus, you also have to haul around on all the stuff that you need for diabetes to keep in line.
I always bring all my supplies in my carry on bag when I fly. That way it’s harder to lose it, and the insulin stays at the right temperature throughout my trip.
The size of said carry-on bag has changed, though, in favour of trying to save my shoulder from falling off from carrying all the heavy stuff. Now I bring along a small, cabin sized wheelie bag where I have all my supplies, from insulin, to pumps, to test strips, to hypo treatment.
I also deposit a few things in my traveling buddy’s, usually my husband’s, bag. At least that way, if I lose my carry on, I’m not completely stranded in terms of diabetes. He has an extra blood sugar meter and test strips, and insulin with emergency-syringes. And glucose tabs. One can never have enough of those.
While I make sure to bring along most things on my travel checklist for diabetes, I don’t always bring everything.
Like ketone sticks, for example. I don’t usually bring those, unless I’m traveling somewhere really remote with no pharmacy within the next hour or so of driving. I figure that I can buy them pretty much anywhere I go.
On the other hand, insulin and BG test strips can get really darn expensive, not to mention inaccessible without a prescription, unless you prepare properly and take enough with you for your whole trip. “Enough” here means way too much, by the way. You never know what might happen, so it’s better to be prepared for most things that may happen.
And, pretty please, get organized and bring your own snacks. Food on the road is generally beyond terrible, and like that you know you can at least eat something. I bring things like nuts and dried meat and other cutleryless foods on the plane, whilst in a car or on the train you can get a little more creative. This time around I’m going to make low carb pancakes and wrap them up in foil to bring along on my long flight, as I know from experience that food on flights is never good.
Another note regarding food, please don’t get fooled by the “need” to snack, which is most commonly masking the fact that you’re bored out of your brain.
Traveling by plane is like sitting in the middle of the desert, although maybe not quite as warm. It’s dehydrating like nobody’s business! Being hydrated can really be one of the keys to better diabetes management, so please do us both a favor and DRINK A LOT OF WATER! (and skip the booze up in the air, but that one is evident, right?)
Getting through airport security can be a lot easier than it’s made up to be. This is of course assuming that you don’t meet an a-hole security agent.
In my 30 years of living with diabetes, having traveled to many different parts of the world (although I have MUCH left to see and visit!), I’ve been stopped exactly twice at security. Once for my test stripes (what, you didn’t mind the syringe full of potentially very deadly stuff in my bag? Ok, then.) And once because my pump set the alarm off. In both cases it was easy to explain, and I didn’t even have to show my medical certificate. Security agents see so many diabetes supplies on a daily basis; they’re barely phased by them anymore. At least within Europe.
Now, I’ve heard that US TSA agents can be a little trickier to handle. For example, they have no problem jeopardizing your super expensive medical equipment and tell you to go through the full body scanner wearing your insulin pump, for example. I would insist on the pat down, not risking any breakages or malfunctions. This of course means that it might take a little longer for you to get through, but it’s worth it, and as long as you know about it, you can plan for it.
The bottom line is, as long as you’re nice and cooperative (enough) to them, they’ll usually treat you with the same respect.
Anyway, let’s check out the goodie in this blog post, my Travel Checklist for Diabetes.
These are the absolute essentials that you need to bring with you (or at least ocnsider bringing with you). If you think “I’ve never needed that before”, you should probably take it along anyway, as traveling can make your body do some funky stuff.
Enough insulin to cover the days you’re gone (this should be a no brainer!) Make sure you bring both basal and bolus insulin, even if you’re using an insulin pump. You just never know…
Blood glucose meter & enough test strips, extra batteries (it might even be good to bring an extra BG meter.)
Keto sticks (As I said, I don’t always bring them)
Glucose tabs (or whatever you use to treat a hypo) (Bring too much of this, you never know what your body think of your new location.)
Snacks. (See above)
Glucagon Kit (most airlines don’t have these on board their planes. Better be safe than sorry!)
Alcohol wipes (these are great, not just for setting infusion sets and cleaning fingers, but also for wiping surfaces like tables, handles or cutlery that seems unclean.)
Other prescription medication and supplements you may be taking (easy one to forget, trust me. I’ve done it before.)
Travelling with diabetes requires quite some extra effort.
And planning. And “in case of” and “in case shit happens” preparation.
Especially if you’re planning to travel far, across the oceans and time zones.
Travelling with diabetes isn’t impossible by any means. I’d say it’s actually the opposite. You just have to know and prepare properly for it.
As I’m leaving on a longer-than-usual trip soon, and as it is my first trip that far with the pump (I really don’t travel enough, clearly!), I went to see my lovely diabetes nurse for some tips and tricks and general good advice.
It turns out A LOT has happened in terms of handling diabetes on the long-go, at least if you’re wearing a pump.
Last time I crossed continents, I was still on Lantus and had very little idea of how to handle it all, with the time zones, different rhythms and change in exercise level. Let’s just say I didn’t handle it optimally well. Partially because I didn’t know how to, partially because I frankly didn’t care about it then as much as I do today.
As a result, my blood sugar levels were all over the place, I was exhausted, not only because of the time zone change, but also because of the rapid blood sugar changes. Add on to that arriving in a bustling city where I had never been before (NYC that time) and wanting to explore it ALL in the few days we had there…
Let’s just say that that equation didn’t really add up to work in my favor.
Which is why, this time around, I’m taking much more thorough precautions before setting off.
Hence, I scheduled an appointment with my diabetes nurse.
First of all, I wish everyone had the opportunity to work with a diabetes nurse as awesome as mine is. She has a safely secured spot in my Dream Health Care Team, that’s for sure.
Secondly, she had a really nifty trick up her sleeve for me to use while in transit.
She suggested that I’d set up another basal program on my insulin pump, with a constant basal rate for the first (few) days. Basically as long as it takes me to get over the biggest jetlag factor.
I have pretty low basal rates throughout a 24 hour time period, between 0.4-0.55 units per hour, giving me a total of 11,3 units per 24 hours. Her suggestion was to set up a basal profile with a constant 0.45 units per hour for the first 24 hours, to give my body a chance to acclimatise quicker, and then turn on my normal basal profile (and change the time on my pump) when I either realize weird spikes in blood sugar, or I feel like I’ve caught the worst of the jet lag wave. (Lowering my basal while travelling seems to generally be a fantastic idea…)
This was completely new to me. And, granted, I haven’t tried it out yet, so I can’t tell you how well it works (or not). But it seems a lot easier than the old ways of changing basal injection times and dosages along as your jet lag diminishes…
Perhaps is travelling with diabetes just that much easier with an insulin pump?
This wasn’t of course the only advice she had for me. Along with the “usual” tips of bringing (much) more supplies than you need, a doctors note for security checks, an extra blood sugar meter & test strips for it, staying hydrated, getting sleep during night time, paying close attention to blood sugar, bring a glucagon kit and snacks, snacks, snacks, she also showed me the “device” (aka chart on a piece of paper) that she uses to calculate a possible return to Lantus dose.
This is excellent information to have if I ever want to go on a pump-cation (a break from my insulin pump), or, if by any chance against all odds, my whole pump system breaks and I need to take Lantus until a replacement arrives. Because I take on average a total of 18 units of insulin per day, the chart showed that my Lantus dose should be around 20 units per 24 hours. I have no idea about the conversion calculation that is used here, so if you do, please leave a comment below!
I feel really relieved and happy that I’m doing all this preparation work for my trip. Now it’s just to keep fingers crossed that the actual trip itself goes as smoothly as the preparations have done so far.
How do you travel with diabetes? What tricks and tips do you use? Please share them in the comment below!
And the other way around, too. But that’s the topic of another story.
Being such a big part of our lives, it would be weird if it didn’t mix in and mash up your plans sometimes.
Sometimes we’re talking about interrupted sleep, another time it’s an unplanned meal on the menu. And sometimes it’s about being so tired, simple chores can be compared to climbing Mount Everest. At least. Not to mention the guesstimation game we play with the pancreas on our hip, in a pen or syringe. Up? Down? A little up and then down? The other way around? Or even *gasp* stable and level? (Watching your blood sugar do a salsa dance on a cgm is sometimes entertaining, as long as you don’t put too much personal attachment to the numbers)
You can almost never tell with 100% accuracy where your blood sugar will end up after a meal, some insulin or just by plain old living.
And sometimes you can’t let the stubbornness of diabetes get in the way, either.
Like the other morning, when I had to get to an appointment I had.
I woke up at 4.4 mmol/l (79 mg/dl), which I was happy about. My cgm curve looked smooth from the night and I was even more happy about that.
I jumped in the shower, washed my hair, moisturized and brushed my teeth. I was feeling a little sleep-groggy, but nothing else.
I went to put on my clothes, got dressed and noticed an odd, fuzzy thought popping up in my head that usually stems from the low-blood-sugar-drawer in my brain.
Nevermind that right now, I had other things to do, like taking my morning medicine (thankfully not insulin) and supplements.
When I got back downstairs from the kitchen, my next task was to do my make up. But I decided to check my cgm first, which showed 4.1 mmol/l (73 mg/dl).
Ok, I thought, that’s not bad, although I’m dropping. More of the odd, fuzzy thoughts popped up, and I decided to check my blood sugar on my blood sugar meter, if only to ensure myself that I wasn’t low.
3.4 mmol/l (60 mg/dl) “treat your low BG!”, my d-companion Doris (OmniPod) was telling me.
“Ahh, eff-word”, I said out loud. “I don’t have time for this!”
I usually don’t treat lows until below 3.5 mmol/l, as I find they usually recover fine from there with just the help of lowering the basal on my pump. But as I was leaving, and it was 0.1 mmol/l lower than my usual threshold, I decided to pop a glucose tablet and shut of the basal on my pump for 30 mins.
Knowing I’d be completely OK within 15 minutes, but had to leave the house in 20, I had little choice but to continue with my morning routine and my make up, which is a fairly effortless task.
If you’ve never experienced a low blood sugar before, let me tell you that it can be quite “interesting”. It feels a bit like being tipsy, without having had anything fun to drink. Or like being in a very fast, accelerating car while standing on the ground. It can be dizzy, vertigo, confused and temporary vision problems all in a big merry go round that doesn’t want to stop right now. (It can also feel a gazillion times worse than that, but thankfully that wasn’t the case this time.)
Having to think twice if you’re *actually* using foundation and not the bright pink blusher heavily all over your face is a challenge I’m usually blessed from. I usually know where things go in terms of make up…
Or double-checking that the eyebrow pencil is still brown and you didn’t accidentally reach for the turquoise eyeliner to fill in your eyebrows instead. Or concentrating so hard on getting mascara ON my eyelashes and not only underneath my eye. Not to mention actually getting that blusher semi-equally distributed. Or checking that the foundation isn’t blotchy anywhere.
This can, but probably shouldn’t, be compared to doing your makeup after a good after work drinking session with your colleagues. In short, no bueno.
Throughout this particular mornings routine work, I kept thinking if I actually managed that well with everything, or if, once I was back on track again, would find myself looking like some Cubist rendition of myself. Or like a clown. Or like Gene Simmons from Kiss.
All I could imagine seeing once the low blood sugar fog had lifted was some weird version of myself, as it would have been painted by Pablo Picasso himself. Or something equally scary.
This time I was lucky, though.
When my blood sugar was back in normal range again, I saw that I looked more or less like myself, if only ever so slightly more tired.
What do you do when your blood sugar drops low, do you keep going or stop and wait? What does your decision depend on?
https://hannaboethius.com/wp-content/uploads/2015/04/blog_low_makeup-1.png1200800Hanna Boëthius/wp-content/uploads/2016/04/HannaDiabetesExpertLogo@2x.pngHanna Boëthius2015-04-22 15:02:092015-04-22 15:02:09The Low Blood Sugar Make up
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.
https://hannaboethius.com/wp-content/uploads/2015/04/blog_hba1c-1.png1200800Hanna Boëthius/wp-content/uploads/2016/04/HannaDiabetesExpertLogo@2x.pngHanna Boëthius2015-04-02 18:42:502015-04-02 18:42:50HbA1c, just a number?
When you start on a new journey, you ideally want to know what the eff you’ve gotten yourself into.
Not least when it’s about your health, well-being and future life.
I get that. I totally do.
And I’ve got something really special up my sleeve for you today!
This is one of my biggest secrets in doing what I do. You could see it as a 4-year short cut, as that’s how long it took me (well, plus 26 years…) to get to where I am today.
Diabetes Sweet Spot
Let me explain this diagram a little (?) more in detail…
First up we have
Sexy Food and Water
What I mean by this is real food that makes you feel your absolute best, fuels your body, your mind and your soul whilst not jerking your blood sugars around.
In my experience, and many others that I’ve helped and talked to, the mentality of “eating and covering for it” simply doesn’t work.
Eating a lower amount of carbs than we generally do today is very beneficial to most people. Even more so if you’ve got diabetes as a constant companion.
Picture this, a doctor tells their patient, who is lactose intolerant, to drink 1 liter of milk a day, “because it’s good for them”… Do you see the flaw in logic here?
If that patient does drink that milk, “like the doctor said”, they will be in a world of pain, discomfort and also spend too much time on the porcelain throne. Because their body is unable to process lactose properly.
Now, picture this; a doctor/CDE/nutritionist tells a person with diabetes to eat 60% grains and carbohydrates with every meal, “because they need it”… (Wait, where have I heard this before…?!)
Carbohydrates, no matter in which form (pasta, rice, bread, cereals, pastries, cookies, ice cream….) turn into pure sugar (glucose) as soon as it hits your mouth and the enzymes in your saliva.
And what do people with diabetes not produce (enough of)?! The hormone that lets energy, in the form of sugar, into the cells, namely insulin. And if we can’t produce it ourselves, we have to add it in a much less precise and guesstimating way in comparison to our well-oiled-running-like-machines-bodies.
Ergo, removing some (or even all) of those sugar-shape shifter-carbs from what you eat is a great idea.
That would be the same logic as for our lactose intolerant friend I mentioned before – to take away what your body can’t process properly to reduce pain, discomfort and make life easier.
(I’ll happily talk more about this, if you don’t agree, let me know in the comments below!)
And water. Tons of clean, clear water infused with alpine air (in a best case scenario).
You need water not only for hydration, but also for moving energy/sugar around, to keep the insulin you take active and to flush your system of toxins and other stuff slugging around.
Medications & Supplements
Even if you do everything else right, it doesn’t disguise the fact that you’ll still need insulin. Just a lot less of it, which in my books is a definite winner! Today, I’m taking 1/3 of the amount of insulin that I used to a couple of years ago.
When you start taking better care of the other areas in your life, you’ll usually get the privilege to cut down on, or even completely stop taking, other medications you might be on.
For me it was the case with my blood pressure medicine. I could cut my dosage with 75% after I started eating better, relaxing and taking better care of myself. But just because I was able to cut down, it doesn’t mean I don’t have to take them at all, I still do. Just a much smaller dosage.
And I still haven’t needed medication for my Hashimoto’s Thyroiditis, which is usually treated with hormones.
I generally recommend a series of supplements, which I’m currently taking myself as well. Yep, all of them:
Vitamin D3, Omega 3, Antioxidants (in the form of green powders), Probiotics, Vitamin B Complex, Magnesium and Zinc. Sometimes I add Chromium to the mix as well.
But these aren’t set in stone; it really depends on you and your own journey.
Self-love & Attitude
Oh, how I can go on about the importance of self-love!
The fact is though, that when you start seeing yourself, your body, mind, soul and brain (and every little cell in between) as one Team, shit starts to shift.
This means that you don’t think of your pancreas (for example) as the bad guy for having applied for (way too) early retirement. Or hate your immune system for attacking your pancreas, thyroid, skin (or whatever else it’s decided you could do without).
And how do you get to your Team Me status?
A lot of it comes from self-love, making sure you feel good and love yourself.
What is self-love then? Here are some ideas:
Eating well. Healthy, healing real food full of happiness and love.
Water! It purifies you, makes sure you get energy to your cells and hydrates every part of you.
Breathe deeply, truly and all the way into your toes.
Stretching or going to that yoga class you know you love.
Rocking it out to your favorite tune is the pure definition of self-love!
Make Gratitude your Attitude! Tell yourself what you’re grateful for every day, either just mentally, or write it down in a journal, or make a gratitude jar.
“Do nothing” days
Reading your favorite magazine with a cup of tea/coffee/or hey, even bubbly.
Treat yourself to a massage or a mani/pedi.
Treating yourself to that one thing you’ve been eyeing up lately. It’s ok to be materialistic, too!
Putting up boundaries. What’s ok for you and what isn’t? Break up with those things that aren’t.
Prioritizing good sleep is good self-care. (Danielle LaPorte said that, and I know she’s right!)
Put. Away. Your. Phone. I promise you, you don’t need to know what is happening on Facebook every second of the day.
But how can you make sure you don’t forget about loving yourself?
Here are my Top 3 Tips:
Schedule it. Otherwise it’s the easiest part to neglect for me (even though I really know I can’t afford to).
Make it a daily practice. Can you feel the benefits of it when you meditate? Make sure you practice it regularly. Does a long walk in the sunshine do you worlds of good? Get hooked on them!
Make yourself your first priority. It sounds really selfish, but it’s not. Think about it, how can you be there for others if you’re not feeling well yourself? Make a team out of your body and yourself, call it “Team Me”. This team always has priority over everything and everyone else. Fact.
De-stress & Movement
This point goes much hand-in-hand with the previous one.
If you’ve changed your attitude about yourself and diabetes, you will have a lot less stress in your life. That’s a promise.
Meditation, eating well, and all of the others I mentioned above help de-stress you and your life.
As does exercise, for example.
I’m not saying you have to turn into an instant iron man competitor, ultra marathon runner or Olympic-grade swimmer right now. (Although if that’s what you want, then by all means go ahead! You have all of my awe and respect)
Start s l o w l y, gently and build on your exercise and fitness level every day. It’s not more difficult than starting with a short, brisk walk outside.
After a while, the walk will automatically become longer or more intensive, as your body feels it can perform better. Before you know it, you might even want to try jogging or hiking in the mountains.
And all of this while not even thinking about your daily walks as exercise! How flipping great is that?!
It doesn’t have to be a walk though, anything exercise-y that floats your boat is awesome, be it yoga, zumba, dancing on your own to your favorite tunes, body exercises, stretches, skiing, swimming, or a royal mix of them all.
The most important point is that it shouldn’t feel like exercise – you should do it by yourself, without thinking “this is hard”.
The rituals you set up for yourself is what you can lean back on when times get a little less rosy and sunny, for example.
If you feel a little lost, you know that your ritual (or routine, but that’s a boring word) can be a saving grace.
Also, if your body knows approximately when or in what order something will be given to it, it knows to prepare for it.
My daily ritual looks a little something like this…
I wake up at 7:30am, find myself a centering thought for the day, after which I check my blood sugar (both on my cgm and manually). Then I check the main notifications on my phone (I want to change this)… Then I get up, take my supplements and proceed to my morning meditation. After a shower and putting some clothes on, I open my laptop and work until lunch, before which I check my blood sugar manually again. It’s a healthy, happy meal. After checking the notifications again…. I go back to my computer and work for another 2 or so hours. Then I go out for a walk (my daily walks are holy) as an afternoon break, after checking my blood sugar. Back to work (client/computer/meeting) until it’s time to make dinner and check my blood sugar. After dinner, my husband and I talk, go out for a date or do something productive. Before bed time there’s the last batch of supplements, taking my make up off with coconut oil, checking my blood sugar and showing gratitude for the day I’ve just experienced. Lights out, sleep.
Of course this differs when I have something special to do, but this is my ground framework.
But this way things like checking my blood sugar becomes part of my routine and it doesn’t feel as difficult or even impossible to do it. I even miss doing it if I somehow skip it in my routine, or have ran out of test strips… (I know, I’m a little weird. But I’m happy that I am, life is that much easier when you’re a little weird.)
Et viola, if you get these areas right for YOU, you’ve entered into what I love to call the Diabetes Sweet Spot.
This diagram is essentially a summary of the last 30 years of my own research and experience, and if you do need some help on the way here, I’m all ears and would love to help you.
Have you found your Diabetes Sweet Spot? How did you get there? And how long did it take you?
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.
https://hannaboethius.com/wp-content/uploads/2015/01/blog_diabetes_lt-1.png1200800Hanna Boëthius/wp-content/uploads/2016/04/HannaDiabetesExpertLogo@2x.pngHanna Boëthius2015-01-28 20:30:372015-01-28 20:30:37Diabetes & The Long Run
I truly love to travel, it’s one of the biggest passions in my life.
To get to see, feel, sense, experience and smell the smells of a new place, is sometimes what keeps me going through a rough patch.
I try to travel as often as I can, meaning as often as money allows me to. And although I’ve never pursued this passion without diabetes, it still makes sure to keep me on my toes.
Like the other week, when I was traveling back from Stockholm.
You know those low blood sugars that you do e v e r y t h i n g in your power to turn, but they just stubbornly hang on as if they were the ones in danger?
The ones that leave you in full panic mode, because what if your blood sugar doesn’t turn in time? What happens if you pass out and become unconscious?
Normally that’s not really an issue for me, my lows usually respond quite well and fast to my figured out and well-rehearsed treatment.
Just this particular low blood sugar wanted to stay with me. And stay and stay and stay.
So, for a little background info… Ever since I got my insulin pump, every time I fly I have to turn my basal rate WAY down. As in to -85% of the normal dose. It doesn’t matter when during the morning, day, night or evening I fly, unless I basically turn off the basal, I will invariably have a hypo.
The first couple of times when this happened I didn’t understand anything. I asked the company that manufactures my pump if, by any chance, high altitudes could influence it? Of course not was the answer, which was later also confirmed by my lovely diabetes nurse.
To this day I still don’t know why my blood sugar plummets as soon as I’m in the air. But that’s not the point of this story.
So, before this particular flight, my husband and I grabbed something small to eat before boarding the plane, because airplane food is beyond terrible and shouldn’t be eaten by anyone.
My blood sugar then was kind of highish, around 8 mmol/l (144 mg/dl), so I bloused a minor amount for the food, bearing in mind I had to turn down my basal rate anyway. It’s gonna work out, I reassured myself.
We boarded, I sat down, and turned down my basal before having to stow my bag in the overhead bin as we we’re seated by the emergency exit.
The take off was smooth considering the weather conditions. The fasten seatbelt light went off, and I went to grab my phone from my stowed bag to finish an audiobook I had on there. “Might as well take down the whole thing” I remember thinking.
Suddenly, I get a massive urge to just talk, talk, talk to my husband. This should have been my first sign that everything wasn’t right in the blood sugar department.
We talk about a future holiday and where we should go, when I suddenly get vertigo while sitting down in my seat. “Wooow, what’s going on?!”
I grabbed my Dexcom and saw it at 5.9 mmol/l (106 mg/dl) and sinking, fast.
Basal was already basically turned off, so couldn’t do much more there. I grabbed a portion of glucose powder with 10 g carbs and chugged it, as I could feel how fast I was falling.
I waited the obligatory 10 minutes before checking both the Dexcom and manual blood sugar again. Dex said 4.5 mmol/ (81 mg/dl) and still falling. Manual check said 3.6 mmol/l (65 mg/dl).
“Fuck. What do I do?” I asked my rationally thinking better half.
“Have more glucose.” And I did. I had another 2 or 3 glucose tablets, munching on them like they were the lifeline I needed.
Considering my normal, total hypo correction is usually 4-8 grams of fast acting carbs, this was starting to worry me. I was up at more than double.
I was also running out of glucose tablets, as I barely ever need to use them anymore, I don’t carry an endless amount of them around anymore.
My darling husband called the flight attendant, asking her to quickly bring me some juice.
By the time the orange juice ran down my throat, I was in full-blown panic mode. Dexcom was still stubbornly pointing downwards.
This had now gone on for so long that my husband asked if they happened to have a Glucagon set in their onboard medicine kit, just in case. Of course, I hadn’t brought one with me. Why would I, I never need it and it’s one more thing for my poor back and shoulders to carry?
Turns out they didn’t have one. And even if they did, my husband, who has been brainwashed in how to use one of those things, wouldn’t have been allowed to administer it. It would have to be done by a medical professional.
As my blood sugar was still stubbornly going down, by this point at 2.4 mmol/l (43 mg/dl), I started to really panic.
Fast acting carbs were clearly not helping in time, there’s no Glucagon set and we still had 45 minutes until landing. If I pass out and lose consciousness now, I’m as good as dead. I don’t want to die here in an airplane, somewhere over Germany. Shit, piss, fuck.
I hear a flight attendant call out over the intercom: “One of our passengers is in need of immediate medical attention. Do we have any medical professionals on board?”
I had to laugh in the middle of my panic, that was a definite first for me. Very rarely have I needed to rely on complete strangers for help in treating a low blood sugar.
The most amazing thing was that on this flight of ca 200 passengers, there were 7 medical professionals. Seven, including a lovely doctor that kept me talking and drinking more orange juice.
The taste of the juice was so repulsive by this point. Eugh, how much I truly hated the taste of orange juice then. But it was my key back to life, so it was just to keep drinking it, especially as my blood sugar was still at 2.4 mmol/l (43 mg/dl).
After what seemed an eternity, panic, too many chalky glucose tablets and way too many glasses of yucky orange juice later, my new doctor friend told me to check my blood sugar again. 4.0 mmol/l (72 mg/dl) – thank all holy powers above, it was moving in the right direction!
By this point we were approaching landing, meaning I would have had to stow my hand luggage again. My husband kindly said that this wasn’t an option, and asked if they could re-seat us somewhere where I could keep my things right by m, in case things got ugly again.
Being a fully booked flight, the only option to re-seat us was in business class. I clearly didn’t care anymore at this point, I just wanted to land and get home to shower, have a hot tea and sleep. The other people in business class weren’t quite as understanding…
The last 20 minutes of the flight I got to sit in business class, which I had never done before. So, in order to lighten the mood, you could say diabetes got me upgraded for free. 🙂
Having buckled up for landing, I checked my blood sugar again. Seriously, my poor fingers. Anyway, it was 5.5 mmol/l (99 mg/dl) and I could finally breathe. Long, deep, oxygen filled breaths, which I hadn’t taken for the past hour or so.
Despite all the glucose and carbs I had had throughout this horror-hour, my blood sugar didn’t start to go up again until after leaving the plane. And it never went higher than 9.5 mmol/l (171 mg/dl), which was remarkable for that amount of carbs, which is guesstimated to be around the 60-80 gram mark.
My husband led me out from the plane on shaky legs, thanking the flight attendants for their amazing help and asking me if I was ok and if he should get me a wheel chair. Being mortified at the fact that diabetes caused me a scene, I told him I’d rather crawl to the exit than get in a wheel chair.
Getting home had never felt so good. Home where I was safe, and where I had Glucagon kits if I needed them. The day after was awful, I had the biggest hypo-hangover I’ve ever experienced, I was pretty much useless all day.
So, what’s my lesson in all this?
Even though everything turned out ok in the end this time, doesn’t mean it always will. I can’t even fly with active insulin from a previous meal, it has to be off. Completely. Also, always bring your own Glucagon. Airplanes don’t have them.
So, in light of this, let me share my 5 best traveling with diabetes tips with you:
Figure out how YOU (and your blood sugar) react to air travel. Do you go high or low? Test, test, test and correct accordingly, either with food or with insulin.
Wear something medical alert-y, whether that’s a piece of jewelry or a tattoo.
Bring more supplies than you’d ever need for the same amount of time at home. It’s better to bring too much and not end up in the dark forests of Sweden without enough insulin… This includes hypo treatment. Bring L O T S of that. You just never know.
Check your blood sugar more often. Is it going up or down? (This is especially where a CGM is truly worth its worth in gold (as they don’t weigh much…))
Choose the pat down at security checks that use full body scanners (especially if you’re wearing medical equipment such as an insulin pump or CGM. You won’t get a new one if the scan damages your equipment.)
Although diabetes sometimes needs extra precautions before you set off, I would never ever stop flying and traveling. It’s one of the most amazing things in life, and all the extra work is worth it. You just need to find out how to counter-act it.
I would love to hear your travel tips, with or without diabetes – how do you make sure you stay healthy and well during travel?
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.
My hands were shaking, I had a slight sweat and could only concentrate with major effort.
I was sitting at my diabetes nurse’s office, plunger in hand, plaster sitting snuggly on my stomach.
“Come on, Hanna, you’ve done this a gazillion times before”, I told myself.
And then I just did it.
I pushed the plunger and the sensor was in. It didn’t even feel worse than a normal injection (sometimes I hate the fact that I can say that.)
So, I got hooked up to my first Dexcom G4 Platinum sensor yesterday.
I have now become a bionic woman, wearing 2 medical devices/robot parts, my OmniPod insulin pump, and my Dexcom cgm. (and yes, they have names, too.)
CGM and Insulin pump – I’m a bionic woman!
I’ve had it on for a full 24 hours, so these are really my very first impressions! And my initial reaction is that it’s beyond amazing! The results have been very accurate (ca 1 mmol/l difference) so far, and I’m hoping it will stay that way.
What is a cgm?
A cgm is a continuous glucose monitoring system, meaning that it measures your blood glucose level in your interstitial fluid every couple of minutes.
This is done by a tiny sensor underneath your skin, which you can keep there for (officially) 1 week, but sometimes longer.
The sensor is connected to a transmitter, sending data to the receiver, on which you can see pretty graphs of what your blood glucose levels are up to.
Although the glucose levels in the interstitial fluid is a few minutes delayed from the level in your blood, it’s an awesome tool to see the trends and where you’re heading, blood glucose wise.
Dexcom G4 Platinum (borrowed from the Dexcom website)
I love making lists for myself. And so also this time.
The pros with a cgm
– The Trends
Seeing the trends and where your blood glucose is heading is very handy. It takes a lot of the worry out of your daily care.
Hand in hand with the pro above comes the security feeling it brings. I swear I slept better last night, knowing I have something extra that has my back.
Being able to analyze my blood glucose better, being able to adjust my basal levels more exactly, instead of my usual guesstimation based on “yeah, that sounds good”.
The cons with a cgm
– Another device
It is, of course, yet another device connected to you at all times. The transmitter is tiny but bulky at the same time. And together with the OmniPod, I may look like a slighter version of Quasimodo in certain angles… For me it’s worth it, although there are certain items of clothing I should probably get rid of now…
– Micro management
The chance of starting to micro manage your blood glucose levels is, to a greater extent, a possibility. Seeing those dots on the screen whenever you want to may cause you to act sooner than you have to.
This toy definitely doesn’t come cheap. If you have an insurance policy that is ready and willing to take care of it, there’s nothing stopping you. But if you don’t, you need to think twice about getting a cgm.
And why, oh WHY, can no diabetes gear holders be at least a little nice? Why does the bag of the device have to make you feel sicker than you actually are? (Or is it just me?)
One more list: my top 5 reasons for getting a cgm:
1. I’ve lost my hypo awareness. Meaning I can’t feel when my blood glucose levels are (sometimes) dangerously low. This can of course be helped in other ways, but the other reasons made this a better choice.
2. Lately, I’ve gone extremely low every time I’m on an airplane. Weird, I know, as my pump definitely can’t be the reason for it.
3. Seeing the trends.
4. What happens in between the times I normally measure my blood glucose. I normally measure my blood glucose ca 8-10 a day, so it’s not like I’m slacking. But I have no idea when my blood sugar peaks after certain foods, for example. Without sounding too OCD:y, it’s to gain more control.
5. To have less question marks in my life. Life is full of sometimes quite pesky question marks anyway, so why add to them if there is a solution?
So far, I absolutely love my Dex (that’s his name, and no, it’s not very imaginative). I can definitely see that he’s going to be a huge help in my self care, and give me a little more peace of mind in the diabetes jungle. Dex passed the field test today, working at a cafe in town, with flying colours (and I did too, I’ve never seen a better graph! (blood glucose tests confirming this))
1st Day CGM graph – not bad!
As I see it it’s either a love or hate relationship with this thing. It has huge potential to help you a great deal in your self care, but it can also interrupt you if you already have a great regime going that works for you. But YES, you SHOULD get one! 🙂
But boy, oh boy, we’ve come a long way since the insulin syringes needed to be boiled to be disinfected. Or from my very first blood glucose meter back in the late 80’s , that took several minutes to give an answer to the ever long question “where is my BS at?”
Do you have a cgm? What do you like about it? Dislike? Let me know in the comments!
Ps. I also have my first impressions written down from when I got my OmniPod about a year ago. Would you like to read that? Comment below!
https://hannaboethius.com/wp-content/uploads/2014/09/dex_small-1.jpeg720540Hanna Boëthius/wp-content/uploads/2016/04/HannaDiabetesExpertLogo@2x.pngHanna Boëthius2014-09-10 18:06:422014-09-10 18:06:42CGM – should you get one?
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