Our friends and family sometimes ask us "How are Frank's numbers?". I guardedly say "Well they're alright I suppose", and they say "Good, so you're managing it OK", and we move onto some other topic. But what I really want them to know, goes something like this:
Frank's blood sugar numbers are only numbers. They are not good or bad; they are just a guide for what we will do next. There are not necessarily any useful trends, just a stack of fluctuating data. Usually there is no particular discernible reason for the ups and downs, and for the large number of readings outside the preferred zone for blood sugar. The numbers are just what they are, a series of snapshots through the day, and there is no mystery to be solved so we can manage diabetes better. We're doing just about alright, and that's about as good as it gets.
For those of us with a fully working pancreas, our blood sugars should be in the 4 to 7 range, maybe up to 10. Going below 4 is hypoglycaemic, and to be avoided. Going much below 4 is a bigger problem, with potentially serious short and/or long term consequences. Going above 10 is hyperglycaemic, also to be avoided, and with serious consequences for long-term health if maintained too high, and serious immediate consequences if very high. In a typical day Frank will have four or five blood tests, and maybe two will be in the ideal range.
Results out of range seem to come from nowhere, which was frustrating for the first couple of years, but is no longer surprising. We have to work with how things are, rather than how we would have liked them to be. Diabetes doesn't play by the rules; it's so much more subtle than anything that can be expressed as a formula or law. We know what signs to look for, and what to do, if Frank's blood sugar is too high or too low, and needs immediate attention.
We know how to calculate carbohydrate content of food. We know how to calculate the amount on insulin to be injected (it's different ratios for the morning compared with later in the day). We know how much insulin to add/subtract if the "before meal" blood sugar reading is out of the ideal range. We make adjustments to timing, having consideration to the type of foods in combination - how quick release are the (naturally occurring) sugars? Will the fat content slow down the whole process, so will his blood sugar get too low, even after a meal? We know how to apply a fudge factor for the amount of exercise taken over the last few hours, and with an eye to what's happening next on the activity front. We know to accept that growth hormones are randomly kicking in, and that Frank's system will be off kilter due to a cold, or a hundred variations on "whatever". We look at nervousness and excitement, and the weather.
And nobody knows all this better than us, his parents. Nobody can look after him as well as us, and no one amongst our (non-diabetic) family and friends has the slightest understanding of the knowledge and skills to manage a Type 1 diabetic, even if they've visited many times or even lived with us. There is no substitute for 24/7 immersion in the topic, and we've had that for over two years now.
So, when I say "it's OK", what I would really like you to know is:
- Type 1 diabetes is an autoimmune disease. IT WASN'T CAUSED BY EATING TOO MUCH SUGAR; indeed Frank was a model of healthy eating before he became diabetic. There is no cure. Frank won't grow out of it.
- There is no "GOOD" (type 2?) or "BAD" (type 1?) kind of diabetes. Some Type 2 diabetics are insulin dependent, some can manage it with better diet and exercise.
- Type 1 diabetes is not a disease where you take your medicine and forget about it. We have to think about diabetes all the time. Yes. ALL THE TIME. We are always thinking about his activity, and what his current blood sugar level is, or what he's eating, or what he's going to eat, or wondering if he's rising or falling (slipping into a coma if too high or too low), or what's going to happen next.
- Diabetes is unpredictable and always changing. Calculating insulin doses is a complicated judgement - and it's NEVER a+b=c. EDUCATED GUESSES are Frank's lifeblood, it's not about number crunching, and scoring "good" numbers.
- Diabetes is deadly NOW. Not in 50 years. Not if we don't take care of him. No matter what we do or how hard we try. If we call our local hospital or have a night in the ward, it does not mean that Frank's diabetes is "bad". Calling experts for help is a normal part of life for us. The more we learn from the diabetes community, the more capable we are to make changes on our own.
- With diabetes, there are no small illnesses. Diabetes makes a simple cold anything but simple. The vague rules we follow go OUT OF THE WINDOW, and we're in the realms of guess work, barely above the level of hocus pocus. Which we've become quite good at, out of necessity.
- We have "BLUE LIGHT" priority at the local hospital, so we can go there any time day or night and get a bed straight in the children's ward. It's good that we don't have to go through the Accident and Emergency bit, queueing up with people who have cut off their own arms with chainsaws, or drinkers who have had the pavement leap up at them. It's bad that we need the blue light system in the first place, but very many thanks anyway to the DGH.
- Wearing an insulin pump does not mean that you're cured, or that life is easy. Frank hopes to get one in 2011. The pump site where a tube goes into the body, is inserted with a needle every 2 or 3 days. We will continue with the many-times-daily finger-prick blood-tests, indeed they will probably be MORE frequent than now.
- We are up EVERY night, routinely checking him over, sometimes changing the bed linen three or more times. That's the way it is, and it is not going to change anytime soon.
- EVERYTHING affects blood sugar - exercise, illness, excitement, nerves, the weather, growth hormones, Colchester United's results...
- Frank CAN eat ANYTHING he wants. However, we'd all be better off with a healthy eating regime. Sugar-free is not always better, if it has disgusting artificial sweeteners. Frank has no need of special food products for diabetics.
- He MUST have his blood test BEFORE eating. Not after a few bites. Not later. BEFORE. So that's why we sometimes appear as Mr and Mrs Nasty before mealtime. At its best it's all an inexact science, and we cannot allow further inaccuracies into our data.
- We go to the hospital every 3 months for a checkup. We know how to handle our child's day-to-day diabetes management better than any nurse or doctor - not that we don't need their expert specialist help and advice. We know his body and disease, and that that being a substitute for a healthy pancreas is pretty much impossible.
- We don't want your pity. We don't want you to feel sorry for us, or for Frank. We enjoy a good, nay fantastic, life. But we want you to FEEL for us... and then take that empathy and put it into action to help us find a CURE (and there's another post coming up on this in a few days).
- People who don't care to learn about diabetes because they tell us it's "no big deal" make us so angry that steam comes out of our ears. On the plus side, this disease has made me less bothered by people who whinge about the slightest inconvenience; they keep their distance from a bristling D-dad.
- It costs a LOT of money, for hormones, supplies, and hospital appointments. Hurrah for the NHS as an institution. And hurrah for the wonderful people at our corner of the NHS, at Colchester and Addenbrookes.
- We can never leave home without our supplies - it's life and death. Nothing is as easy as before... SPONTANEITY of actions and eating IS IN THE PAST. When we leave the house we are fully loaded, with Frank's medical supplies and spares, plus his snacks, and juice, plus lots of water as he has a huge thirst. Plus emergency supplies in case of transport breakdown or unplanned delays; what would be inconvenient for you would be a big deal for us, unless we had planned ahead. When we go away, we check out where the local hospitals are, and the route from where we are staying. Save your money by coming shopping with us, we're fully loaded before we start!
- When we come to you for a meal, we will have an emergency meal for Frank in our bag which we will crack open at his meal time, if you are not serving up. Experience has shown we cannot depend on YOU to provide what you say you will, at the time you say you will. Diabetes stalks us 24/7/365 and doesn't wait around benignly. It has no holidays or rest. NOTHING.
- Diabetes changes EVERYTHING, you can't - for a minute - let your guard down or get "lax" in your care or attention to detail. We do need to know if you have given him some food when we weren't looking. Just because it came from the health food shop, and has "natural sugars", a sesame brittle is still very high carbs, which may be better avoided, or at least allowed for, insulin wise.
- We are TIRED, and we often look like hell, can't think straight, sport dark circles under our eyes, don't hear what you're saying... because we live in a parallel world where diabetes hijacks our brains from time to time... and our energy.
- If I seem extra VAGUE at work, sometimes my mind's elsewhere. My main job is looking after Frank. My main part-time paid job is a couple of days a week, but I have to work at home some evenings to make up the lost time when I can't focus at my paid job.
- We are very FORTUNATE indeed that the two of us have the capacity to devote our efforts to our son. However, we have no family or friends support - no one outside the D-community has stepped up to learn about T1D, or how to test and inject, or learn how to manage it. WE CANNOT LEAVE FRANK WITH ANYONE FOR AN HOUR.
- My wife and I rarely have time together... alone. Date nights are non-existent as we have to be back for the 10pm blood test. So, while I will be genuinely happy for you that you get to go away for your anniversary, or that you got to go out together for dinner and the theatre - I'll also be very jealous! (The play was rubbish anyway.)
- I really REALLY REALLY like to answer your questions, as it shows you're taking an interest.... BUT I really don't want to hear about your 93 year-old Great Aunt Mabel who lost lost both of her legs and went blind, especially you telling the story in front of our Frank.
- I do NOT want to hear about a cinnamon enema, a bed of nails with a kryptonite pressure prong onto the pancreas, or some amazonian tree moss that you think is going to cure him. I really don't want to hear you suggest that we just stop giving Frank carbs and everything will be alright. If it was that simple do you really think I wouldn't know?
- No, I'm really not glad Frank "got it so young" and that "he'll never remember life before". No, that's sad. And his exposure to a health threatening condition is longer than those diagnosed later.
- Do you need an ANIMAL put down? Our medical supplies are all around our home - in the fridge, in his green bag kit, in the van, juices stashed in convenient places, sharps bins, spare supplies, boxes of kit, paperwork for his treatment, all to help us have a normal life while living with Frank's Type 1 diabetes. We have enough insulin to knock out a small herd of horses.
- It is incredibly painful to hold your child down to give him shots or blood tests. This should always be done with the agreement of the child, and it can take a stressful hour on some occasions.
- We've already cried enough tears to fill an ocean, it does get better with time, it will always hurt, and we are always UP FOR THE FIGHT for our child and his health.
- We will never let diabetes stop him or hold him back. Dealing with diabetes makes you stronger. Our boy is so brave, even when we feel weak.
Thanks to Hallie at http://www.theprincessandthepump.com/ for inspiring us to tell our day-to-day story.