Leave your Diabetes At Home

I haven't written in a while. I couldn't. I didn't have the words to express how I felt. About diabetes. About how frustrating it can be. About how sometimes, it feels so hopeless to just continues on. About the ways it can impact on your life.

I have been PISSED OFF. Even that doesn't quite cover it.

I think it started with Japan. It started with the lows. It started with the highs. It started with the heat, with the nearly-full vials of insulin I threw away. It started with the more-than-regular set changes. It started with waking up all night for many nights with exercise induced lows. It started with cursing and blessing CGMs. It started with trying to do it all, do everything and get everything from Japan that I wanted to, but couldn't because sometimes diabetes elbowed and shoved its way to the start of my 'attention' line. You can't chastise diabetes like you would a rude customer who butts in ahead of you for service in a store, because diabetes can do so much worse than swear at you if you tell it to wait its damn turn.

I really can't forgive diabetes for Japan. I just wanted a trip away. Just a trip away. With Type 1 Diabetes, you can never have a trip away. It comes with you everywhere.

I did the right things. I had so many doctors appointments in the lead-up that thats all my diary consisteted off. I took an ENTIRE carry-on suitcase full of supplies, when I really could have used that space to smuggle back Pikachu. I bought CGMs, I wore CGMS. I planned.

In the end, it doesn't matter what you plan for because diabetes doesn't work to plans.

I think I broke at about the 15 day mark, in Nagasaki. When I went from 11 to 20 within 2 hours after yet another vial of insulin gave it up, exasperated in the heat. When all I wanted to do was go for a walk in the gardens. But I had to do a crazy tram dash back to the hotel to get some cool insulin from the fridge and lower my BGLs, get rid of the insane high headache and extreme nausea.

I couldn't forgive diabetes after that. I turned my back and played the 'I can't hear you' game until it prised my hands from ears and screamed straight into my face that I had yet another BGL of 20-something to treat. Which was about twice daily.

Don't get me wrong, I loved Japan. I had a ball. But the 3rd wheel of diabetes was not at all welcome.

I'm trying to pick myself back up now. I went to my educator's appointment on Monday with not a single reading written down. I hadn't saved a single BGL into my pump. I was wearing a sensor so my educator could at least look at that. She normally wears a happy face when she sees me. On Monday she had obviously visited the Happy Mask shop in Hyrule Castle Town and traded it for something much sadder.

I told her that I wasn't feeling particularly kindly-inclined towards my diabetes and I did't want to think about. She made lots of mumblings to herself and then changed my basal rates. Which I knew needed to happen, but I was too cranky to think about it.

Then to seal the deal that she wasn't happy, I was sent home with basal testing. Which I never do even though she's been asking me to for a year. While I'm cranky at diabetes, the last thing I want to do is starve myself for hours for it. But I had made the mistake of taking my boyfriend along because I was jealous that other betics sometimes have their support people with them and I never have mine, so I agreed to let him come. So he is trying to enforce basal testing. Not happy Ashleigh.

Working hard on becoming tolerant of Morty again, but I feel this may take awhile.

Japan: 5 days in

It has been quite a hectic few days in Japanland. I have never been so happy to have CGM. This one so far is holding up extremely well and has been nearly always bang-on with its readings, to the point where I have felt comfortable giving my fingers a little break and testing only at wake-up and before bed unless my CGM says I'm close to hypo, & I'll test then to confirm.

D has NOT been behaving itself so I am running my sugars higher at between 10 - 14. If I take insulin with a meal I will be low at 1 hour post meal but if I don't take it I reach about 15. Tokyo is extremely hot and if you add a BGL of 15 to the humidity it makes for extreme tiredness that makes travel hard. So we have settled on a routine of no insulin for breakfast, 1 to 2 units for lunch depending on car content and about 2 u for dinner.

Basal wise I am pretty much on suspend from the moment I wake up until we are back at the hotel at night - suspended for about 12 hours a day. I have discovered that I also need to do a temp basal at night. I'm not sure of the rate yet as I am still waking up with hypos (which has never been an issue before) at about 3 - 4am and then again from 6 - 8am. I'm quite thankful for the CGM for this, as normally at night I silence it because of pressure problems, but surprisingly it hasn't had these this time - must have picked a good spot. I don't feel hypo at all when I wake so smiles all around for CGM just rescuing my butt 2 times a night.

Total insulin usage has dropped from 40u a day to about 15.

At home I tend to be a bit* fixated on getting good numbers, but right now I just want to enjoy my holiday without D getting in the way. If I have higher BGLs for 3 weeks then I have higher BGLs for 3 weeks.

To sum up with a positive note about D in Japan: I bought this ultra-deliciously cute case to use as a day kit when I get back to Aus:

Its inspirational as well. My fave is 'Take it easy, I can assure you everything will turn out fine'. Ahhhh happy bear.

Japan: Nikko Edomura Wishing

Japan: Take 1

My 1st day in Japan has come and gone. It was adventurous and exciting and you can read what I did at my other blog, 'Tonyobyo in Tokyo'.

Being that this is my diabetes blog, I will be chronicling my diabetes in Japan. Which so far has been a bit of a challenge. All I can say is: Thank gosh for CGM and 10kg cabin baggage allowances (I will upload a photo later of the massive amounts of D stuff I managed to squish into 1 bag).

The plane trip, diabetes wise went ok. I ran myself higher, at about 10 - 13 to avoid the post-landing hypo that I always seem to get. I changed the time on my pump and was set to go diabetes wise for that day.

Today went not so awesome. I did a set change - 1st set change in the Northern Hemisphere for me! That was fine. I inserted my CGM, for which I had bought a new box of sensors just for our Japan trip. The CGM had kicked in and asked for a calibration at about 10.30am. I calibrated with a BG of 7.1. About 1/2 an hour later I was getting alarms from my CGM and caught my hypo at 3.7. Yay for CGM! My CGM was accurate the whole day which was great - I think I stopped about 4 or 5 more potential hypos that would have added to the 3 I did have.

Definitely recommend CGM for ttravel for that peace of mind and abilitgy to manage before the event in terms of hypos/highs.

The rest of the day I spent battling becoming or actually being low in the extreme humidity of Tokyo. My estimation at the end of the day was that I had had my pump disonnected or on suspend for about 8 hours all up during the day. I even tried a temp basal of 30%, which didn't work.

At dinnertime, despite having been on suspend for 3 hours (aka NO insulin delivery for 3 hours) my BG fell to 4.1 again so we had a rushed dinner at something that resembled a Mo's burger, but was called 'Buckers' or something equally as weird. I gave myself only 1/2 the recommended insulin at dinner and ended up on 4.5 2 hours later.

The highest I reached all day was 10.9, with the lowest 3.3 thanks to my CGM.

Excuse my Red undies in the background

Tomorrow is a new day. I'll try a 10% temp basal (which will equate to less than 0.05U/P/H) tomorrow and see how it goes.

The Pre-Japan Travel List

PUMP

1 ½ boxes of infusion sets

1 ½ boxes of reservoirs

30 Alcohol swabs

3 spare batteries

CGMS

transmitter

charger

5 x sensors

10 alcohol swabs

Clear over-tape

INSULIN

scripts for NovoRapid & Lantus

6 vials of insulin (NovoRapid)

NovoPen Echo & instructions

1 x box of pen needle tips

BLOOD GLUCOSE MONITORING

8 x boxes of testing strips

2 x IQ meters (+ recharge cable), 1 x standard Verio meter

1 x double-pack spare batteries for non-rechargeable meter

Lancing device x 2 + spare lancets

MISC

Doctors note

Hypo stash (Jellybeans, glucotabs)

Sharps clippers or container

Alan (aka Calorie King)

Ketone strips & Ketone meter with spare batteries

Tape

Id Card with emergency contact

Cold pack

Glucagen

Medical ID bracelet

When People say stupid stuff

One of the things I struggle with most when dealing with diabetes is how much of a 'public' disease it is. Everyone has a view on diabetes. Sometimes its very hard to make people see ours - that the person WITH diabetes - as the most important view of all.

Diabetes requires a lot of micromanagement, and endless doctors, educator, endo podiatry, optometry and more appointments. Every one of these health professionals have their own view on how we should be treating our diabetes. They are all right and they are all wrong. I'm ok with these viewpoints because I seek them out. I want to know their opinions, and when I don't agree I feel like I can discuss this with them.

What I don't want is unsolicited opinions. They are never beneficial. They are usually judgemental and rudimenatry views established from watching too many 'A Current Affairs' stories on the 'diabetes epidemic' - you know the ones I'm talking about; where they talk about type 2 the whole time and bad eating habits, but then show the little kid with type 1 running around in a field of daisies at the end.

I've seen a lot of them on food posts lately  - someone bakes a yummy, sugar laden cake and you can bet that in the comments somewhere the typical 'diabetes in bowl' will spring up, fully laden with pain, hurt, resentment and embarrassment for the diabetics actually reading it. It belittles and makes a joke of a serious disease.

I get a few from people out loud. I was happily counting my carbs at a cafe the other day (I do this outloud as I tend to be able to keep track more), when I got the comment "That's no way to live". Actually, for me, it is the ONLY way to live. Thank you and mind your own effing business.

So why do people think they can have an opinion on diabetes and parade it around without living with the disease itself? Please, please don't. (This is probably going to sound rude, so I apologise in advadance.) Why diabetes? Is it not a serious, lifelong condition? You would never hear anybody say anything about cancer or any other disease, except to acknowledge that the person with cancer is suffering and to offer words of support and encouragement. Even if the person has lung cancer caused by smoking. Do we get public support? Sometimes, but those voices are far overshadowed by the ill-informed loudmouths. We get told it's our own fault, and we should live with it. So we should obviously suffer everyone's hideously misinformed opinions (which some people like to express quite loudly when they know they have a diabetic in earshot, or just to your face). STOP STOP STOP!!!! We have feelings. Even though we know it isn't our fault (Type 1) we still feel ashamed, some of us still hide our disease (at a detriment to our own health), because of all the public misconceptions and the ridicule we might encounter. Even in the case of lifestyle-induced type 2 diabetes, they don't deserve that embarassment. Can you honestly say you do everything perfect all the time? Some people just like chocolate, so effing what???? Why is that so horrible? You will never know how they got to that stage. Everyone has a vice!

We have this disease for life. I'm pretty good at brushing ridiculous remarks off my shoulders, calling the perpetrator an uneducated twat, and moving on. Some days though, when you've had a few hypos, when your blood sugar has been givin you hell all day and you feel like dogballs, its not so easy and you might go home absolutley in tears about it. It is for life, and if you hear that sort of suff every single day, it can wear you down.

Encourage us, please.

And if you're the one writing stupid stuff, watch this, take a pointer and do it better next time.

Connect-In

Something I seem to have been discussing a lot lately with various other young D's is the lack of physical support available. We have a website and...hey we have a Facebook page. I'm not entirely sure why, but it has been decided somewhere along the line that we can get all the support we need off the internet. I've since had a talk with my DE who says we used to have stuff for young adult type 1's a little while ago, but that it was cut due to lack of funding, or something to that effect. I was given some names of people to contact to try and start something up here in QLD, but I have forgotten nearly everything she said due to a hypo in the middle of our consult, so will have to email her and ask for all those details again.

It's also pretty apparent that if you have Type 1, you should move to Melbourne. So last weekend I had the pleasure of attending the 'Connect-In 2013' Type 1 diabetes camp for 18 - 25 year olds, held in Melbourne. I wasn't too upset about the travel as I had never been to Melbourne before, so got to be a bit of a tourist whilst I was there (random domed shopping centre, cold cold cold & OMG Trams!!).

I loved it. I just love being near other betics. To say something or do something and everyone else in the room understands. In my normal life, this never happens. I know my loving man wants to understand, but unless you're betic, you really can't.

I was so excited not to be the only one in the room finger-pricking and bolusing and wondering how many carbs are in that - plus points to DA Vic for providing a carb guide for all the foods we were eating that weekend so we didn't have to count ourselves :). Actually that was great - to be able to switch off that part of my brain for 2 days was terrific! I think its something alot of us need every now and then - a weekend where someone else does our diabetes thinking for us. It gives you a nice little break so you can recharge and get back into D.

What about the program? The 1st day I didn't find overly exciting or interesting. I knew the basics of D, the basics of carb counting and most of the stuff they discussed. But it didn't bother me to hear it all again, you can never assume everyone knows the basics. I can't remember where I read the study that said something like only 5% of diabetics have a more than basic understanding of their own disease....actually maybe that number is wrong - but I was shocked at the number, it was tiny. (Note to self - find study...its probably at work somewhere). Someone please correct me if you come across it! It was only this year I think. From the 1st day I think my personal stand-out was the exercise seminar. She wasn't D but it was the only one that got us up and moving and really involved us to make us think about WHY exercise is so important - and not just cos of D. My body also really thanked the mentor - I was getting stiff from sitting so long.

The night-time activity was a good choice I think. Pizza & bowling bar. I don't normally eat pizza, but ate it anyway, so perhaps a choice of food next time. Although I could have gone and gotten a sandwich from the sandwich bar at accommodation if I had wanted beforehand. I liked that the activity was something physical to do to burn off energy - but it was a physical activity that didn't require much thought in terms of D. I just didn't bolus for my 2 soft drinks and ended up with perfect levels afterwards. We also discovered our sets glowed in the Ultraviolet lights. Exciiitement! The ability to go off and do our own thing afterwards was good as well - Hellloooo pancakes!

The 2nd day's program was much more of what I came for, all the things that seem to be happening around me now - travel, social media, etc. But the women's session scared the beejebus out of me in terms of having babies. They probably should have had a counselor with us for when they showed us the stats on complications for our pregnancies!

Actually that was something that was lacking - a 'feel good about D' seminar to explore how D has maybe enriched our lives or something more to do with our mental health? There was a sort session on burnout, but there is so much of the mental health side of things involved with having a disease like diabetes. Honestly when I think about it they could probably do a whole camp dedicated to the mental health side of D!

Overall I think it was a successful weekend. I made some great D friends, I felt encouraged to look after my diabetes because it was the norm that weekend. I really do hope the other states will catch on and set up programs of support for young adults and adults with diabetes. Knowing that you're not the only one out there can be an amazing support in itself. I'm sure I wasn't the only one encouraged into extra testing and looking after my D that weekend, so I can only think of benefits when opportunities like this arise. I know myself, I will be looking into Diabetes Queensland and seeing what we can do here, even if its something as simple as hiring a few beach cabins and spending a weekend in the company of other D's. Now that Diabetes Vic has paved the way....

Ron & Hermione during the exercise seminar 

BOWLING

Pancakes that look like ice-cream

I did in fact get pancake all over my face after I took this

Tameeka & I were excited that the door said T1

We were also exicted to see we were staying in the 'Sweet Wing', whilst plaing with our LIGHT UP PENS

I may have adopted an animas penguin called Dudley

How do I hypo? Let me count the Ways

How do I hypo? Let me count the ways.
I hypo in the 3's and 2's and sometimes 1's as well.

• Mild hypos, where you feel a niggling sense of being over-hot and a little confused, but you can pop a few of the sweet things and move on without so much a second thought
• Moderate hypos
• Giggling hypos, everything is funny
• The hypos when you're too tired to chew your jellybeans so you start choking on them instead
• The hypos caused by shopping. Secretly, I think retailers are ok with this, because hypo brain doesn't care about prices and just buys
• The hypos in the supermarket, where you stand in the vegetable isle looking for the funny vegie that you saw a lady walk past with and you just have to eat it, despite not knowing what it is, and knowing that it probably has negligable carbs.
• The other hypos in the supermarket where you stand in the lolly isle looking at all the choices you have and buying all or none because you can't make up your mind
• The other other hypos in the supermarket when you talk to your food and the supermarket guy hears you
• The hypos where your boyfriend gets frustrated because you take soooo long to chew the jellybean or drink the juice. He usually complains of chest pains afterwards
• The post-coital hypos, when you would rather be cuddling
• The hypos caused by hot showers, where you feel about to pass out due to a combination of hypo and heat, and your 1st instinct is to get dressed incase so whoever comes to your rescue doesn't find you passed out naked
• The hypos that take an hour to come out of
• The hypos where you just keep dropping, so you eat and eat and in the end you want to vomit, which might result in another hypo
• Olympic hypos, caused by seeing the Aussie team compete
• Exercise hypos, which you don't recognize until late, and then you have to hobble home slowly so as not to exasperate it
• The hypos that happen everytime you are running late to something that starts dead-on-time
• The end of the day hypos, which only happen after long days at work when you can't wait to go home. At least you're prepared and have a gameboy hiding in the car for such occasions
• The hypos when you burst into tears and cry about that day 9 years ago when your fish died, and how you really miss him
• Cold weather hypos
• Hot weather hypos
• Post-correction hypos
• Pig-out hypos, when the noms take over and all of a sudden you find yourself surrounded by empty chip and chocolate packets, with jam donut smeared over your forehead
• Multiple hypos

Long Time, No Blog

I need a break! I think right now I have definitely bitten off more than I can chew, and diabetes has taken a back seat. Oddly levels seem to have coped well and have ALL stayed in range, except for the spike to 14.2 tonight because my partner kept passing me sneaky M&Ms in the cinema which I didn't bolus for. 

In the past 2 days alone I have: gone to work, ducked for a house inspection, gone back to work, caught up with one of the most amazing ladies on earth for Chocolatey Goodness, went to my 2nd job of the day, Crawled into bed and died, woke up and then somehow fit 4 house inspections all across the South Side of Brisbane into 1 1/2 hours whilst battling low blood sugars, seen a play of the Phantom of the Opera across town with another amazing Chikadee, gone out for a date night with my leading man and watched "After Earth" and finally come home to relax. 

This just starts my month! Tomorrow I'm driving to the Gold Coast for a birthday lunch for my brother. With cheesecake as a dessert! Yumm yumm.

And so the hecticness will continue, with a medieval banquet next weekend (I get to wear medieval clothes and be all pretty like!) and the following weekend Hugh & I will be braving the chills in Jervis Bay for some sort of a family reunion on his side. 

After that diabetes will be able to squeeze itself back into the picture for my new pump start. In the end, after weeks of comtemplation between Animas & Medtronic, I opted for Medtronic as I already owned the CGMs equipment for it, amongst other things such as the ability to get an external remote and being able to customise skins (I have designed quite a few and just have to pick one to get made now). I've chosen the purple Medtronic & will name it Lewis: The Purple People Eater. I'm very excited. 

Speaking of customisable skins, I ordered a very pretty skin for my Verio IQ! I love it and it helps me want to test...I show it off to everyone, even the non-betics.

I'll have a week to play with my shiny new pump before I ship off to Melbourne for the Connect-In diabetes camp, so that weekend I guess I won't really have an excuse but to try my diabetic best! I'm very much looking forward to this, especially for the chance to connect to other D's. I hope I can grub up some exciting diagnosis stories (I love these so much!). I've never been to Melbourne before so I took an extra day off work and will go down early to see the sights before getting serious with D.

Whilst all this is going on I have to find and move houses; I'm not looking forward to all the packing and cleaning and organising on work days as I don't have weekends to do it. Arghh just thinking about this is going to send me crazy!  

I've pretty much had to abandon D360 this week due to all my running around and things like my fathers birthday dinner, catch ups with friends and everything else already mentioned. I'm sure I gained back the whole 3kgs I lost in the 1st week. Honestly I may have to wait awhile before attempting this again. I also want to start up at a gym, but again that will just have to hold on - probably until after September as Hugh & I have only recently booked our plane tickets to Japan for most of September - so I guess I should organise that as well!

Finally, I'm crazy and decided I don't have enough on my plate so I started SEQ Young Diabetic Catch-Ups, which is based on doing activity days for young adult diabetics who are in the South East Queensland Region during one of our catch-up days. With all that's happening the 1st one is set to be held at the end of July, after Hugh & I should have been comfortably settled into our new rental property for a good week and a half. Pop over to the Facebook and send us a message if you're interested! I will also see if I can advertise the dates/times/locations/etc, on sites like JDRF, where I think they have a meet up section, as well as Reality Check, for those that don't have Facebook. I'm very excited about this group though and I hope it will get people in the D community more active and involved - we'll see. It's also for all types of D, as I've seen that for some reason we are segregated from each other in the diabetes community. Everybody needs support, plus you might learn something else about D you never knew before.

Bring on October and a chance to breath!!! 

Starting D360

I finally took the leap and signed up for one of those health & fitness programs. Starting small on one of those internet ones. Even better, an internet one run by a fellow T1D.

I got into the swing of it a bit yesterday and cut back my snacking. Which I did. I'm not expecting to be able to do everything at once, just so we're clear. I find I can easily achieve my goals if I work at 1 thing at a time.

So yesterday was all well and good. Went to measure myself, decided it was too cold, so I'll do that tonight. I will probably also complain that it is too cold tonight to put the measuring tape against my skin.

Anyway, today I got up, ate my UNhealthy breakfast of cereal...and chocolate milo cereal at that.(One of the D360 nono's). I had already decided pretty much straight away that the guideline of no cereal was going to be ignored. Just not changing from that. After 23 years you can't tell me to eat anything different for breakfast. Brain does not compute for a prep time of more than 1 minute for breakfast. Even toast takes too long.

I looked online at the list again of nono's, which included all white carbs. It listed my entire food vocabulary. People provided suggestions for what I could replace my white carbs for. In the end I decided with not eating carbs, rather than try new things. I don't do new things. If I haven't eaten it before, I won't start now.

One of the other participants had told us about her delish sounding breakfast of tomato and salmon and spinach and some other thing I had no idea what the crap was. I would eat the spinach. That's it. We're probably getting the picture that I'm a fussy eater right about now. Sad face for me because her breakfast really did sound amazingly yummy.

I did a little better at lunch and had leftover chicken and veg stirfry where the only carb was corn, which is probably white, but seeing as its yellow I will happily ignore that and continue to eat it. 1.5 hours later and I was feeling a little funny. Check BG 3.9, first number below 4 in about 2 months (since the Chris incident). Was happy cos it means that I can probably cut down my basal rate at this time, which is what I am aiming for with the program. Weight loss would be a bonus. Ate 3 jellybeans to combat hypo & walked across to plaza to buy a toner. Hypo returned with a vengeance. No idea what the number was, didn't have my kit on me. Left that at work. Anyway, hypo brained me ruined everything in my feeling like death state and I somehow managed to gurgle out that I wanted a white hot chocolate and indicated to some sort of cake at Gloria Jeans. Scoffed both.

Went to my aunties for dinner and had a very vegetable based spag bol. It had pasta but I wasn't too worried as I just filled up more on meat and veg than the pasta. Besides, its Winter. I probably  definitely should not have started a program like this in comfort food season. But then I remember I don't want to look fat in photos when I go to Japan in September, so will stick with it anyway.

Left Aunties. Sent home with a bag cookies. So I guess today is cheat day. Hot choc and cookies, here I come. We'll try again tomorrow.