Frustration is probably the overwhelming sentiment. I don’t know at what exactly. Myself? A disease I have no control over? My control over it? I don’t exactly know but it’s a frustration that can sometimes send me storming off into the cobblestoned Riga backstreets pouring muffled curses into my scarf at myself and all things diabetic.
It’s usually the high blood sugar readings that do it to me. When I’m low I just react, eat quickly and move on. But high readings seem dark and ominous. I think in the back of my head I know what happens to your body when you don’t control diabetes. The ugly long term things like losing sight, toes, touch, sensation and your general health and wellbeing. So the lows annoy me – the highs scare me.
Today I stopped in the streets of Vilnius, Lithuania, to measure my sugars. Ellie stepped forward and offered her hands as a platform for me to put my blood glucose monitor on. I tested and I could feel every one of my family members go a little tense. They were waiting for the reading and my reaction – because I have been on a bad run. And in the middle of a bad run everything seems harder. Every bad reading makes me feel more and more out of control.
But it was good. My sugars were perfect and I could feel everyone breath a sigh of relief for me.
But the bad run…..they’re not pleasant. I don’t know when it started. I was sick a few weeks back so the sugars were high but that made sense. Then we were sitting on trains for days on end so my normal insulin regime was completely wrong. You can’t stick to what you know when your energy output has gone from walking several kilometres around cities to sitting still for 48 hours straight. Energy output down – means sugars sitting unused in my system.
So I increase my insulin then mistime the adjustment to when we ARE walking for 10km around a city. Suddenly I can’t stop myself from going hypoglycaemic. Nothing I can do is right. I can’t seem to get my food or my insulin right. So I go screamingly high – and pump myself full of insulin to counteract it – then I plummet and can’t seem to get back to normal.
Diabetes is the balance of three things – food intake, insulin and energy output. Like a set of three pronged scales. Sounds simple. But imagine the scales sit on a table with hydraulic legs. Those legs all go up and down independently – shifting, moving and changing for unknown reasons (fatigue, health, emotions). You strike a perfect balance one day and then the next day nothing works. Then for no reason you can see everything works again.
So it is all about control over what you eat, what exercise you do and what insulin you take. And right now I have no idea what food is good or bad or how far we will walk today or tomorrow or the next.
And on top of this I am walking past countless European cafes selling warm fresh cinnamon buns or jam filled pancakes. For someone whose favourite pre-diabetes food was fresh cinnamon donuts there is only so much one man can take. So in utter frustration I take my eyes off the diet ball and once again the roller coaster begins. Sometimes I just get exhausted with having to think about it all the time – with having to either act or restrain myself every waking moment just so my body is in balance.
But I have finally wrestled back some control. After these low times of wild sugars I have given myself a talking to and focused hard. And slowly it has returned to normal. Soon I will once again enter one of those blessed periods when I actually momentarily forget that I have diabetes.
But Mel spotted my pattern – and the exacerbating factor is my emotional reaction. I go low so I react with an overload of sugars out of frustration (also because I feel so bad and need to consciously restrain myself from gorging on sugar to stop the world from heaving) . I go high and react with too much insulin out of frustration. Then it all goes pear shaped.
My control has come with another very interesting observation. That everything works better when I actively AVOID carbohydrates. I cut them out of the diet as best I can and everything seems to calm down and swing less violently. In Asia it was easier to avoid carbs but here it is a different story.
The Australian doctor Troy Stapleton who is pushing the no-carbohydrate approach to diabetes uses a brilliant analogy. Controlling diabetes with carbohydrates intake and corresponding insulin intake is like keeping a fire at a consistent level using paper and water. Using fats and proteins is more like burning coal.
So a small part of me is looking forward to being back home where I can cook anything I need and have everything on hand. Where I can drop the carbs out and focus on methodically working out what food is good for me and what is not.
But then a rather large part of me says “That time will come. Don’t wish it too soon.” Because I know that in a blink of an eye I will be home. That everything here will be a memory and that this emotional roller coaster will mean nothing to me. Better to wander through ancient, history laden streets with an easy mind than stress too much about a momentary loss of control.
I have been following you from the beginning of your amazing journey. This is the first time I have commented. I was diagnosed w/ Type 1 diabetes in 2009 @ 49yrs young and currently use a pump to help manage my “condition?”(for lack of a better term) You have so eloquently described your feelings and frustrations and I wanted you to know how much I appreciate that .I get it, I too take it very seriously, but understand completely why others drop out or step away from managing it fully. It is such a rollercoaster ride at times. Your words and thoughts make a difference and I want to thank you. Don’t beat yourself up and enjoy that wonderful adventure w/ your amazing family.
Sending warm thoughts,
Yesterday morning someone in this house gave themselves 16 units of NovoRapid before breakfast, instead of 16 units of Lantus and 4 NovoRapid. Oh well, that’s a bit thick. No excuse, just not enough care. At least it would all be over in 4 hours. Covered with extra hot cross bun, banana bread, and banana. Lowest was 4.5, and back up to 7.3 before lunch. Sort of under control again except for the rude remarks.
Matt! We all feel frustrated for you. But you are not letting it stop you and your family having an extraordinary indescribable wonderous journey.
Dear Matt, You deserve to get a little down at times. Managing your diet, energy balance in so many foreign environments is a very admirable feat for all of you. Love and best wishes,
You’re amazing, and this journey will in fact assist so many people with diabetes stop being afraid and know they can live life. Keep enjoying every minute, life is always waiting and frustrations are all around. I love your blogs. Hugs Lisa
“Diabetes is the balance of three things – food intake, insulin and energy output. Like a set of three pronged scales. Sounds simple. But imagine the scales sit on a table with hydraulic legs. Those legs all go up and down independently – shifting, moving and changing for unknown reasons (fatigue, health, emotions). You strike a perfect balance one day and then the next day nothing works. Then for no reason you can see everything works again.”
This was my favorite paragraph, and perfectly describes a disease that often has extremely confusing rhymes and reasons. Add travel and unknown schedules to fatigue, healthy and emotions, and you have the perfect storm for frustration. I hope you fully enjoy the rest of your trip, despite some annoying highs and lows!