Psych!

The first time I saw a psychologist, a few years ago now, I left the aappointment feeling more hurt than when I hard started. When I was fresh and new to diabetes I had some anxiety over hypos, the adjustments I had to make to my daily routine and the constant worry that had fit itself into my handbag right next to the glucose tablets, taking itself everywhere that I did.

I was laughed at when I talked about my fear of hypos and the impact it had on my life. "My brother in law has Type 1 Diabetes" this psychologist said to me. "It's hilarious to watch someone having a hypo. The things they do are very funny to see".

The session was ended (there wasn't even a point in trying to fix that mess) and I never went back for another. An offer for a future appointment was declined.

For the next few years I was ok, I didn't have a need to visit any mental health practitioners. My anxiety was well controlled through techniques I had learnt years earlier at CBT sessions (Cognitive Behavioural Therapy) and the more hypos I had, the more I felt comfortable in my ability to deal with them. The fear that I wouldn't be able to treat them dissipated.

At the end of last year I reached out for help again. My anxiety was still well under control, but I had dealt with a lot and I knew that the way I felt - tired, uninterested in my usual activities (including writing!), sad, crying over silly little things, unmotivated, uncaring about myself and wanting to withdraw socially - was not my normal. 

So I made an appointment with a GP, asked for a care plan, and found myself the name of a psychologist who I was told was much more understanding about diabetes. 

I walked in with a huge knot in my stomach, terrified that my first session wouldn't work out. I left knowing I had found *the one*. The right psychologist for me.

Just as we have partners in life, I think we also need to have partners in health care. After all, some of our health professionals are walking a very intimate road with us. They know things about our bodies or minds that even our closest family and friends don't.

My new psychologist know Type 1. She shared that her daughter has type 1 - and my 'judgement' barrier immediately flipped down.

I have my next appointment this week. I'm looking forward to it almost as much as I am looking forward to seeing my DE (and I seriously love seeing my DE!).

I find it so much easier to care for me if I have the right team helping me to care for me.

So here's to self-care in 2018 - a better year than 2017.

Fresh

I thought I was ready to 'dip my toes' into life last year. I was wrong. I don't think this was a constructive thought for me, when in fact I actually needed to fall apart.  Why did I think I had to push myself to start small when I didn't want to?

Last year was an awful year for me. There were so many things that were going on that I didn't have the clarity of mind to properly express or emotionally deal with.

I learnt that even events that people consider 'happy', can be quite stressful, emotionally draining and contribute to poor mental health and inability to cope with life in your usual way.

In no particular order, last year I: bought my first house with my husband (incurring a major mortgage), moved, experienced the deaths of loved ones in our immediate family, had significant job stability changes with multiple levels of adjustment, changed job roles, adopted a cat, experienced illness and changes to my usual health, and sought help for depression.

When you add these stressors to a chronic illness, things can spiral. Actually, those stressors on their own are enough, never mind my diabetes!

I can't say I coped well with all the changes in my life last year. I can't say that I was 'strong' and that I said and did the right things the whole time. I can't say I considered my diabetes in these situations and managed everything well. I can't say that I carried on despite everything.

Because I didn't. I let my life turn to shit. I wallowed in misery and a constant feeling of being insecure about the present moments I was living in and my future. There was so much for me to comprehend that I didn't know where to start. I tried a few times but the 'get up and go' attitude I usually rely on had gone walking.

I ended 2017 on my couch, miserably ill (an extra Christmas gift from my lovely nephew) and reflecting on all the hard, awful things that had happened. I started 2018 in my bed, miserably ill, and sound asleep. I didn't make a new years resolution. Instead I set some self care goals. I identified what I would like to do for myself. What could I do to make myself feel secure in my life again?

I am doing little things. In December I sought professional help for my mental health. Last week I bought a nice new work outfit and paid way more money than my cheap ass would normally part with. Then I wore that nice new work outfit and felt awesome.  Today I am writing a blog, because depression stopped me from doing my usual favourite activities and GODDAMN, I MISS WRITING. I was wary about writing again. I first wanted to write a few weeks ago but didn't have the confidence in myself to know where to start, or to know that I could continue.

What would I write about? Would it be all doom and gloom? Well, I guess it sort of is today. Pen to paper (or fingers to keys) is how I have always expressed myself. So maybe I let the doom and gloom leach from my fingertips and become absorbed by the bright machine screen.

I can only do the things that I can do, no matter how slow that process is.

End Life Hiatus

It's been awhile.

I took a life Hiatus. A lot happened in a very short space of time for me and the best way to deal with it was to shut down, and do absolutely nothing with my life besides survive it. It was the best I could do at the time.

I removed as much outside distractions as I could. I just had to get through work, and get home each day. If it was a good day, make a meal. Feed the fish when I could remember that they existed (I'm sorry fishies!)

At the end of last week I decided to dip my toe back in to the space of being a functional human being again.

The housework is done little by little each day. The fish are fed regularly. I am back to exercising every 2nd day.

I did my first HbA1c since last year (shhhhh!)....and it wasn't the worst.

So I'm going to try to be back. And just cross my fingers that life stays stable so I can keep moving onward and upward.

I'll even try to get through the millions of fellow diabetes blog notifications that I have gotten, and catch up with other people's lives.

Diabetes Blog Week Day 2 - The Cost of a Chronic Illness

Click here for The Cost of a Chronic Illness - Tuesday 5/16 Link List

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)


Budgets have definitely been on my mind lately. I just bought a house (I will stop talking about this soon, I swear!), and am now the proud owner of 30 years of debt. Saving for our house deposit was hard and required some cut backs. It didn't leave us a whole lot of wriggle room for frivolous expenses and I had to include my diabetes as a frivolity.

Where I could cut corners in diabetes expenses I did. Whilst not recommended, my sets averaged about 4 to 5 days instead of 3. I reused reservoirs until well after the writing had disappeared.

I cut back on the amount of blood sugar testing I was doing. My average went from around 10 tests a day, to between 3 to 5.

$170 - a pretty normal chemist bill for a T1D on an insulin pump - This was for NDSS supplies only, no extras

I rationed 8 boxes of CGM over one and a half years (I'm now on my final box from a subscription I started in January 2016). Now that I actually have to pay back a mortgage, CGM is out. Luckily, my my mum helps with that cost, but I can no longer afford a subscription. I have calculated that I will be able to get 3 boxes over the course of 12 months, that I will mostly use for when I go away for work, as I am hypo unaware at night. I will have to start setting alarms for sleep, and just deal with being tired at work.

The consequence has been worsening glycaemic control. In the world of diabetes, money can make looking after yourself a whole lot easier. I went from A1C's in the perfect range, to the 'average to sub-optimal' range. I dream of the day when I will have good control again, but that requires tools I can't really afford right now. Maybe when I'm retired.

Things aren't about to get any cheaper. Private health insurance prices and private doctors fees rise every year. There are talks of a sugar tax - for me that will be yet another increased expense, and probably result in further worsening glycaemic control if I have to try and increase my BGLs to not have to pay for the luxury of treating a hypo. I have severe gastrointestinal intolerances to jellybeans and lollies - and can only have juice or soft drinks to treat my hypos. I can stomach glucose tabs - but these cost an arm and a leg to get into Australia.

Its hard enough as a young person trying to become independent, own a home and even consider raising a family, without adding the expense of a disease like diabetes on top. Most people my age are struggling, and they don't even have an insulin habit to support. If I said a future with diabetes, expense-wise, didn't scare me - I would be lying.

Diabetes Blog Week Day One - Diabetes and The Unexpected

I can't believe it's Diabetes blog week again. Where did that year go? 

Click here for the Diabetes and The Unexpected - Monday 5/15 Link List
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)

The way that I understand Morty (my diabetes), in the little personality that I have given him, is that his life motto is 'Expect the Unexpected'. Which is actually just a life motto, really. What does go according to plan in life?

I don't know if you can ever truly make diabetes bend to your will and become predictable. Even if I do the same thing everyday, there are still slight differences that can change the course of my day and diabetes. Some days there are only slight varients and my usual diabetes routine works for 90% of the day. Some days I have no idea which way is up and which way is down and diabetes comes along for the ride, and I take it as it comes.

I moved house last week. There were lots of unexpected things to come out of that. I didn't expect to be standing at my front door at 5pm in the afternoon, yelling obscenities and in a flood of tears because I couldn't figure out my new locks for a solid 10 minutes. I didn't think that shoulder barging the door would work to finally get in, but it did - and 20 points to Hufflepuff for not actually breaking the door at all when I did that. I wasn't really counting on inheriting 3 goldfish that the previous owners just kind of left for us to inherit (at least they left the fish food?!). I didn't account for how busy I was at work, and not being home until nearly 10pm each night for various reasons, and how that might affect my eating patterns. I didn't plan to lose all my diabetes supplies in the multitude of boxes in my garage, and not having any spare sets to change out to.

All part of the fun of moving on in life, and just going with the flow and dealing with things as they happen. The locks? We talked about which order we will lock them in so I can get into the house every day. The Goldfish? I'll keep feeding them until they die. Its not hurting me to keep them, so I guess I have Harry, Ron and Hermione now. In getting home late each night, to an unpacked house, I have just had to adapt to eating the best I can on the run. Diabetes supplies? Thankfully, I know other diabetics who have come to my rescue, then made it my mission to find and unpack that box first.

I don't really know if I can prepare for anything unexpected - I just make sure I know the processes for dealing with it. The unexpected high of 30 last week that came when my set stopped working after lifting boxes was dealt with quickly by injection until I could find a new set to change out to. Even if I dont have a spare set, I always have a pen and needle tips. I always have a juice, and I always have my glucometer and strips. Those 4 things mean I can deal with anything that comes my way.

The Diabetics First Home Owners Guide

A step-by-step guide to owning your first home, despite the crippling debt that diabetes forces upon you

1. Save all the money. Coles brand jellybeans are now your best friends (even if they cause some weird digestion issues), and its time to get comfy with the fact that your pump reservoirs are reusable almost indefinitely. Seriously those babies are still good even after the writing has worn off. 
2. Being poor means you have a lot of time to not do fun things that make you happy and relieve stress, unless all your friends happen to love sitting on your couch and binge-watching old Buffy episodes as much as you do. Take advantage of this joyless time in your life and find first-home inspiration. View display villages, open homes and auctions.* Don't forget to take plenty of hypo treatment because you will walk far more than you realise, and try to do this in winter, not summer. Temporary basal rates are your best friend at display villages.
3. You have scrimped and saved and now there's a small but sizable number that has you nervously checking your bank security every day and interrogating your partner on why they used the account to buy chocolate (it turns out its actually your chocolate that you needed to not fall into a pit of despair - Hey, that's years worth of savings and bad Coles Jellybeans right there!). You probably didn't make the 20% recommended deposit but is that even possible these days? A good mortgage broker can still find a way to make it work with some obscure sounding bank that will allow you to purchase the house of your dreams a house that you are vaguely comfortable living in.
4. Its time to get serious about finding your new home. Expect kitchens to feature prominently in your dreams. Pro Tip: put chocolate bars in your glove box. These will come in handy at around midday when you feel sad about all the houses you have looked at that are not really 'you' and are still somehow out of your price range. Don't talk to other people at the open houses. They are all baby boomers who paid off their first homes in 7 years back when homes were affordable and are purchasing their 12th investment home.
5. Congratulations! You found a house. Total land size is probably less than 400m2 and at least an hours drive from your place of work, but you can hammer nails in the walls wherever you want and no-one can tell you how clean to keep your venetian blinds. Now to start the extremely tedious process of submitting your offer and waiting for it to be accepted. Expect lots of blood sugar changes. Good diabetes care is waking up alive for the next month until settlement date.
6. Your offer has been accepted and you played hardball right back to the sellers real estate which was very difficult on your BGLs. Time to relax for 5 seconds, and then start packing. Everything causes a low BGL right now and the closer to settlement date you get, the worse your diet might be. Pizza and the 6 hour later blood sugar spike is a given the night before moving. Everything's packed and you are too physically and mentally exhausted to make a real dinner.
7. Settlement day will probably look something like this: waiting for settlement to happen = Anxiety, high BGL, feel sick. Moment you hear settlement was a success = sudden drop from BGl of 22 to 3 in 15 minutes flat. Much whooping and air punches. Try not to drive hypo to collect your new house keys, no matter how excited you are. Its a good idea to know where your new property is actually located and at least have enough battery to navigate you there if you don't. ** 
8. Time to move! Today you will want emergency hypo treatment everywhere. Stash it in your car, your bathroom cabinet, the pockets of everyone helping you move, anywhere and everywhere that you might go. Look forward to your final night of take-out and the chance to get back into regular routine again.
9. You report to the bank for the next 30 years of your life. Try not to die of anything remotely related to your diabetes in this time, because that leaves your partner in a bad position financially. Its a good time to make an agreement that if you die, your partner should make your death look as non-diabetic as possible, so that your insurance will pay out. Yeah, there's that lovely bit of discrimination we get to go up against.  

*You probably went to all the nice, big display homes with awesome upgrades and inclusions or the open homes in nice neighborhoods. You can't afford these and diabetes. Lower your standards or get rid of your disease. 

**Yes, I did pick up my keys, forget where my new house was and not have enough phone battery to navigate me there. I did follow the signs back to the city so I could pick up my husband who is much, much better at directions, so its ok, I didnt die in the wilderness of my new suburb. 

Sound

Do you ever have those dreams in the middle of a dead quiet night, that you're falling, and you die? And you think that its real, that maybe you died. You wake up and try to determine if you're in some kind of in-between place, where everything around you seems too calm and still so your sleep addled brain tells you that your gone. Then you hear a dog bark, or a siren, or a terrifying Darth Vader possum hiss and you know they're the sounds of being alive.

My life has another soundtrack that helps to remind me I'm alive. I play it on repeat every day; so constant that I almost know the lyrics. It starts with a mechanical click of springs sliding and locking into place, followed instantly with a dulled thud. Then begins a silent 5 second countdown that might continue on in silence, or end in 2 digital beeps. Silence is good. Beeping is bad. If I beep, even my husband knows what that means - that my day has not started well. Beeps are either followed by angry swearing (and my husband knows he can get a few more minutes of shut eye), or clumsy rustling in my bedside drawer,  the slight hiss of air as a foil seal is punctured and loud gulping and breathing noises as I smash down a juice to treat a low. I don't really hear any of these though. If I am low then my aural senses become dull and disconnected, replaced by a ringing that I can't stop.

The pattern repeats itself, over and over throughout the day. The click of the lancet, the silence or beeps of the glucometer.

My pump plays a different tune to add to my diabetes medley. "Pah-tunk", "pah-tunk". This is the sound I recognise as an interaction between myself and King. Pah-tunk to select bolus. Pah-tunk to unlock. Quiet ticking as a bolus is delivered. I have silenced King, annoyed with his constant chatter. Still he communicates what he needs. The vibrations are audible against my skin, against my mattress, or against thin air. When I am connected to CGM, and in danger, he screams. I cannot ignore the shrill, piercing cry that King makes to alert me to an unresolved low at 2am.

Every 3 days Kings' continuing song is punctuated with a change in rhythm. I add in the clinking of a pencil against a new reservoir to get rid of the air bubbles. The whirring of King's motor as it rewinds. The steady beeping King makes to indicate that insulin is filling a new set line. A pop as the new set is pressed and inserted into my skin. If I am lucky enough, a click of my CGM transmitter sliding onto a new sensor.

These are the sounds that let me know I have life, and am lucky enough to afford to live it.

Life in the Sensitive Lane

In the diabetes world there is a lot of focus on insulin sensitivity factors.

Insulin sensitivity is how much insulin your body needs to effectively convert your carbs into energy and keep your blood sugar in check. When someone is said to be insulin resistant, their body is needing to use too much insulin to get the job done. When they are sensitive they require less insulin.

It's better to be insulin sensitive. If you google insulin sensitivity there are dozens of articles telling people how to increase their insulin sensitivity and reduce insulin resistance. There are medications that can be used to help patients who are insulin resistant to lower there sensitivity. Exercise is known to increase sensitivity. There are things you can do.

If you're like me, there are no articles or words of advice. I am insulin sensitive. My doctors congratulate me on this, but are always scratching their heads in confusion as to what I can do when I go through episode after episode of unprovoked hypoglycemia.

At present, some of my basal rates sit at Zero. Zero Point Nothing. From 1pm through until 5pm everyday I receive NO insulin through my pump. King sits on my hip merely for decorative purposes (and so I dont forget to reattach later). 

I eat my lunch at 12.30pm and don't give insulin for that either. About 2 days out of every 5 I still find that I can go low mid-afternoon. With no insulin on board. No insulin via basal. Frustratingly, I cannot go into negative insulin. All I can do is eat something which feels unnecessary and only serves to put on any weight I might lose through good exercise routine. Being insulin sensitive means that I find it very difficult to maintain exercise habits, as often I have to consume vast amounts of food to even attempt exercise. 3 days ago I had to eat 200gm of carb to exercise. 90 before, 30 during and 80 following exercise. All on no insulin. My blood sugar was on 4.3 1 hour before exercise rose to 7 after eating..and eating...and fury-drinking some sprite, before dropping back to 3 15 minutes into my walk (oh, so strenuous) and finally settling on 4 after the forced post-exercise meal.

There are no answers for cases like mine. Being LADA, I may still be producing my own residual insulin. It seems unlikely given how quickly my blood sugar can rise if I do get my carb counts wrong at other times of the day, but its possible. 

The suggestion has been to try exercising early in the morning. I start work at 7.30am though, so I am not inclined to get up at 5.30am for a run. I am not a morning person. A nice morning lie-in is not yet another something I am willing to give up for diabetes.

Insulin Sensitivity is over-rated.

Rain Dance

 I grew up as a child of the country. I knew geography not by lines on a map but by which rolling green hill. creek or clump of trees signified the end of our family properties in the Tweed Valley. My mum owned 5 acres near Murwillumbah and my dad lived on 25 acres of family land in Piggabeen.

Piggabeen Hall, down the road from our property

Living rurally and away from town centers meant we relied on tanks for a lot of our water needs which meant we had to be conservative with our water use, especially at the Piggabeen property. Cleaning off after a day of playing in mud, scrambling up trees, sitting in old rusted out tanks and traipsing through chin-high grasses was sometimes a challenge. There was a bath in the house, but we were limited to a few small centimeters of water in the bottom of the tub, barely enough to cover our toes. If we remembered early enough, we could have showers which we would do as quickly as possible because the hot water timer was set to 2 minutes of warm water before becoming freezing cold. Showers could only be taken during the day, because the shower and toilet were in an outhouse which had no lighting and was shared by cane toads at night. 

When storm and rain events happened we took full advantage of the pouring water, running around the yard with a bar of soap to enjoy a shower that lasted more than 2 minutes, and getting equally as dirty in the mud as we did clean in the rain.

In a really good storm, there was a dividing ditch that went from the start of the 500m long driveway and past our house. It had been dug to keep cattle and other animals from getting into the farmhouse (except horses, somehow they figured out the small footbridge and were always getting into the yard, or even the house). The ditch ran off into a creek behind the farm house. As kids, it was the best idea to go as far up the driveway as possible, get into the flooded ditch and ride the current until we got to the house, then hop out and do it again. It was not at all hygienic and we'd often be riding through the water next to cow patties, rotting wood and other unknown items. We just knew we had to scrub really hard in the bath afterwards.

The driveway into our property. The tree line at the far back is where Piggabeen Creek ran.

Storms and flooding were usually a fun adventure. The tanks would fill up and we could drink water from cups that we left out to collect the rainwater, which tasted way better than the metallic tasting water that came out of the tanks.

On the flip side, we understood well that too much water could be dangerous. The usually calm creek behind the house would rise and flow heavily and fast, out towards the Tweed River. Riding the ditch could become very dangerous if you didn't get out in time and ended up in the creek.

My mums property was on the outskirts of Murwillumbah and roads could flood quickly, cutting us off for a few days, unable to go to school - which as kids, was awesome. The house itself was never in any danger - it was on high ground. Mum was always prepared, and if she thought we might be cut off for a few days she would fill up all the containers and the bathtub so we would have enough water. She grew her own vegies and fruit and made her own bread so we didn't have to worry about food so much. Helicopter drops were also a good back-up option.

My grandparents still live in Murwillumbah. They live on high enough ground that they were able to stay in their homes over the last week when many others were evacuated.

The importance of being prepared and having a plan is something I learnt on the land. It can't account for all situations but it can help.

JapanDia

A month ago my husband and I celebrated 10 years of getting in each others personal space bubbles, mashing our lips into each others faces, and not making decisions about what we want for dinner together. To celebrate, we booked some of those crazy Jetstar return free travel deals to Sapporo in Japan in February.

We left Brisbane with temperatures of 37°, and arrived to temperatures in Hokkaido of -7°. Cold weather and a 40° temperature swing was a very welcome change. Last time we were in Japan it was so hot that my insulin was only lasting a day and a half before expiring. No such issues this time. 

It was such a different travel experience to what I had had before. Sapporo was absolutely covered in snow (It is in contention with a few other places for snowiest city in the world), at points being built  up at least a metre taller than my husband and I. 

Naturally, once again I had to smuggle diabetes and all of its luggage into my carry-on. I must be getting better at controlling my uninvited travel companion though, because I barely heard a peep from my diabetes in the week I was away. Even on that day that we went to Odori Bisse Sweets and I ate 2 desserts before dinner, then dinner, then dessert again (which you can read about on my travel blog at: http://tonyobyointokyo.blogspot.com.au/). 

Of course there were some small blips. Thankfully, unlike in Europe, Japan doesn't believe in trying to sell sugar-free soft-drink alternatives, so not only did I only have to consume a small amount of a soft-drink to treat my hypos, but hypo treatment was blissfully easy to find.

The Japanese have a slight obsession with making food accessible (you cannot walk more than 200m without coming across a mini-mart stocked with delicious goodies). On one particular night, we went to the Sapporo Beer Museum for dinner when just after arriving, as we were standing in the freezing cold, I was alerted to a hypo by my pump. I could see that there was a long line into the beer museum (and therefore to any possible food inside). Immediately my eyes fell on a quiet bus stop across the road. Nearly buried in the snow was my shining beacon of hope. A vending machine. With an endearing exclamation of 'F***ing Japan' and 100Y later, I was guzzling a freezing cold soft drink. The temperature of the bottle made my lips numb and my throat ache as I swallowed the frigid liquid but at least I had hypo treatment.

Later on once we were inside the beer factory we found a beer marketed towards diabetics. Beer is remarkably cheap in Japan, so yea, that beer is 200Y - roughly $2. You can get full alcoholic beer at their mini-marts (like our 7-11's) for about $1AUD. 

The day after visiting the beer factory I discovered an unexpected plus to having diabetes in Japan. The very last picture on this 'reserved seating' sign on our tram was described as being for people with 'internal organ failures'. If my Type 1 isn't an internal organ failure, I'm not sure what is. So at the very least, if I really wanted to, I could get a seat on crowded public transport (although I would never use it, it was interesting to see).

Seat for a Pancreassasin

There were a few learnings in taking diabetes into such a cold climate. Like how hard it is to calibrate when wearing so many layers. Sometimes the CGM had trouble talking to my pump through my 5 + layers. I usually need more insulin in winter in Australia, but because I used so much more energy to walk in my copious amounts, it all sort of evened out and I barely even had to put on reduced basals.

Having CGM with the suspend before low feature was an absolute gosh-send. Usually my pump was hidden well within my clothes, so I just sort of had to rely on the CGM and  pump to make a few executive decisions about my diabetes management for me. Something about punching holes in my fingers in -7° temps didn't make me feel all that enthusiastic about finger-pricking.

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Reasons why I'm hypo:

Its the exact opposite right now. After having an AMAZING week BGL wise, I had my first hypo of the week, unclipped my pump, and forgot to clip it back up. 6 hours, dinner and dessert later....all without insulin....my meter is not a happy chappy. Neither am I. #diabetes fail