Unless you’re a type 1 diabetic, or you’re a close friend/relative of someone who is, it’s unlikely you have any idea how it affects your life. I’ve had diabetes since I was 8, and I try not to let it stop me doing anything I want to. But the fact is, it’s a pain in the backside 24/7. You never get a break from it, ever.
OK, so you have to take injections and not eat sugar, how hard can that be?
Actually neither of those things are remotely problematic, but what’s much more difficult is maintaining good control, and having to plan everything you do. Things have improved vastly in the last 30 years, we now have home blood testing, on machines that take 5 seconds, rather than peeing in a test tube, adding a fizzy tablet and checking which colour it turns, we have insulin pumps that allow us to regulate our insulin intake far more effectively than injections, and some lucky people have CGMs (continuous glucose monitors) that track their blood sugar levels right around the clock, every few minutes (though they still have to do blood tests too in order to calibrate and verify this).
I won’t bore you with all the details, but here’s a summary of how it affects my day on a trek. The first thing I do when I wake up in the morning is check my blood sugar. Stab my finger, apply blood to a test strip, wait 5 seconds, check the result. If it’s on target (4-7 mmol/l) I can rest happy. If it’s low, I need some form of sugar urgently (I keep glucose tablets and/or Haribo sweets to hand 24/7 in case). No, I can’t wait half an hour till breakfast is ready, by that time I could already have collapsed unconscious. If it’s high, I need to take some insulin, and hope that it’s dropped sufficiently by the time breakfast comes (it can take anything from 30 minutes to a couple of hours for this to happen). If I have to take down my tent and pack up my things, this burns energy, so this can make my blood sugar drop (hmm, better have a haribo or two before I start).
I then have to consider what I’ll be doing that day. If I’m going to be exercising of any sort, I’ll need ro reduce my basal rate (amount of insulin that slowly trickles into my body and keeps me alive) or my blood sugar will drop. How much I need to reduce it by depends what I’ll be doing. I’ll assume I’m going uphill for the next 5 hours, so I’ll reduce it by 50%. On to breakfast…..now I need to count the amount of carbohydrate in my food, and take the appropriate amount of insulin to match. A bowl of porridge, well that’s normally 30g carb which requires 2 units of insulin. But wait….did they make it with water or milk? That changes things. How much sugar did they add? Taste it and guess….. How do you know how much carb is in a food? Years of experience and a lot of guesstimating, but yes, sometimes it goes horribly wrong.
But wait….if I take insulin right before I go walking, it’ll get absorbed faster than normal. I’d better change the way it’s delivered so that it goes in slowly over the course of the next 2 hours, rather than all at once.
Right, we’re all set, now I can start walking. Throughout the day, I’ll need to keep an eye on my blood sugar levels, to see if they’re rising or falling. If they fall below the magic number 4 mmol/l, I’ll start to feel dizzy, hungry, sick, tired and generally weird. If I leave it for more than about 10-15 minutes in this condition, I’ll become totally incapable of walking and have to stop. Leave it more than about 30 minutes, and I’ll probably be unconscious. If my blood sugar levels rise too high, I’ll feel thirsty, tired and need the loo frequently. Leave it too long, and I’ll end up unconscious too. Talk about a rock and a hard place. And if I get it wrong and over-correct, or have the wrong basal doses, I can switch from one situation to the other within 30 minutes. Nice. So as I walk, I try to monitor how I feel. Hmm, I feel hungry, is my blood sugar low or am I just hungry? Oh, I feel a bit tired, is it high or just the effect of walking uphill a lot? Every time we stop for a snack, a rest, or a check of the map, I’ll generally check my blood sugar to be sure. The more tired I get, the less likely I am to notice the symptoms, or to be able to differentiate them from normal tiredness/hunger/thirst feelings. I make sure I always have sugar easily accessible so I can grab a few Haribo as I’m walking, if necessary. It’s terribly embarrassing to have to make everyone in the group stop while I eat a cereal bar and recover, but sometimes I have to. It can take up to half an hour to recover from a bad low blood sugar, so I obviously want to minimise this risk. Luckily, people are usually very understanding, but it doesn’t make it easier, especially if you’re in a hurry to finish before dark!
In the evening, I have to keep monitoring carefully, as funny things can happen to my blood sugar. Sometimes after I stop, it’ll shoot up high within 30 minutes, as a result of all kind of chemical processes that go on in the body. And sometimes, it’ll gradually start to drop, in the sneakiest possible way so I won’t be aware it’s happening, especially if I’m tired after a long walk. This is when I rely on others to keep an eye on me for “acting strangely”. Since I am known to act strangely most of the time anyway, this can be quite tricky! Even during the night, I have to monitor my blood sugar too. If I wake up and feel strange, I’ll test again. If my blood sugar rises, I’ll wake up desperate for the loo (which is never great when you’re camping). If it’s low, I’ll have to fumble around for the glucose tablets, and often I don’t wake up till it’s already pretty low, which means I’m not very compos mentis (who is, in the middle of the night, at the best of times?) and it may take a while before I’m feeling better and can go back to sleep.
Every few days, I have to change the infusion set and refill the cartridge of the pump with new insulin. I also have to keep an eye constantly that the tubing doesn’t become blocked, get air in, or the needle fall out, all of which would result in severe high blood sugar levels and potential unconsciousness within 12-24 hours.
All this means I also have to carry a lot of extra equipment, and I have to be sure to keep it cool, but above freezing, and dry. For a week’s trek, I typically carry: 2 bottles of insulin, 7 infusion sets (needle with a long tubing attached to it), 5 reservoirs (similar to syringes), about 70 test strips, a blood glucose meter, a stabber to get the blood out of my finger, spare batteries, and for backup, a couple of syringes, more insulin, and potentially a spare meter. About half of that has to go in my day pack for fear of it getting lost, broken, or too hot/cold. Then I also need 7 tubes of glucose tablets, a bunch of cereal bars, and a pack of Haribo or two. Most of it I won’t need, but I have to take it just in case. Typically I’ll get one low blood sugar episode per day, which might require half a pack of glucose tablets, but I might get several per day, and there’s nowhere to get more if you run out. When you’re restricted to 12kgs or less of weight in your kitbag, and your daypack is heavy enough already, this extra weight and bulk means careful planning is required. So if I smell on the walk because I’ve only packed one tshirt and one pair of socks to make room for vital medical supplies, I’m afraid it’s a case of medical necessity.
But I’ve got friends with diabetes and they don’t do all this stuff. Aren’t you a bit obsessive?
You probably don’t notice all the things they do. And yes, some people are more obsessive than others. I’m not particularly obsessive, but having already lost a lot of my sight due to complications, and seen my dad lose both his legs and finally die, from complications, I’m pretty keen to keep things under control as best I can. Thiry years ago it was impossible to keep such control without all the technology we now have.
Oh and by the way, having diabetes doesn’t mean I can’t eat sugar or drink alcohol. Or have a good time.
What? You must be a bad diabetic! Isn’t that cheating?
Actually no, I’m not. Modern technology means we can do all these things, it’s just that we have to know how to deal with them. I can eat sugar as long as my blood sugar isn’t already high, and as long as I take appropriate insulin for it. I can drink as long as I’m careful not to overdo it, as that could lead to dangerous low blood sugar levels in the night. And yes, I can climb mountains, it just requires a lot more effort and planning.
In part 2, I’ll tell you about the other reason this trek is going to be particularly hard for me, due to being partially sighted.