Newly diagnosed type 1 diabetes
If you have recently been diagnosed, these tips may help you get used to living with diabetes. Hopefully type 1 diabetes (T1) has been explained clearly by your Doctor. I’m sure you have lots of questions and wonder how you will manage to keep your blood glucose (BG) level in range and cope with blood testing, injections etc.
If you are a parent of a baby or young child with T1 I hope you will find this article useful. With all the technology and knowledge of T1 availailable now, your child can live a very healthy life and T1 need not hold him/her back from anything they want to do.
You will have been given a prescription for insulin and syringes/pens/Glucagen/pump and a blood glucose test meter. These hints may help with the day to day stuff:
Give yourself time to adjust. T1 is a lifelong learning adventure. Don’t try to cram too much information into your first few weeks; it will just get confusing. The best tip I can give you is ‘learn the basics and get organised’.
- Keep your spare insulin and Glucagen in the fridge. The insulin you are using at the moment should be stored in your bag etc. Don’t leave it in a very hot or cold place.
- If you use 2 types of insulin:
Basal is a background, long acting insulin and is taken once or twice a day. Take it at the same time every day to avoid it overlapping. If you give it too early, your previous dose will still be in your system, which may cause your BG to drop too low. If you don’t take it on time you will have none in your system for a period of time and your BG may increase.
Bolus is a quick shorter action and is given when carbs are eaten or to adjust high BG levels.
It’s very important not to mix them up (give Bolus instead of Basal). Keep them in a different pocket in your bag, put an elastic band around one of them or anything else that will prevent you from giving the wrong one. I speak from experience when I say it’s easy to mix them up.
- I have a phone reminder set for my Basal (long acting) insulin. It’s easy to forget it and it needs to be given at the same time every day. Otherwise it will overlap and may cause a hypo. I speak from experience here too.
- Make getting your diabetes supplies a priority. Pick a day/time you will check your supplies. Set a reminder on your phone or add a note to your calendar. You need your insulin to live, so it’s essential to be organised and never have the stress of running out.
- In Ireland all diabetics are entitled to get their T1 medication free of charge. Ask your Doctor or pharmacist about this if you haven’t been told about it.
- Hypo kit: Fancy name for fast acting sugar/glucose (sweet drink/jelly sweets etc.) that will bring you blood glucose back to normal range when it goes too low. I have these in my bag, in the car, at work etc. Chocolate doesn’t work quickly enough and in the time it takes to work you may become ill, so it’s best to have quicker working jelly sweets, sugar or a sweet drink to hand at all times.
- Keep your insulin, glucose meter and hypo kit with you at all times. These are your friends. They will help you lead a healthy life and reduce the risk of diabetic complications.
- Get a suitable bag to hold them in. I use a makeup bag for my insulin pen, BG meter, Lancet and spare needles. Some handbags have small pockets on the outside and these are great for easy access to test meter etc. You may prefer to use the case the meter came in.
- It’s essential to move your kit from bag to bag if you use different handbags. Maybe put a note on the wardrobe to remind you to transfer your kit each time you change bag. Guys embrace the man bag or use a small rucksack. A flexible iPad bag might suit. Be inventive. Before you look for a bag, put everything you will need into a plastic bag and use this to try out any potential bag/holder you see. Any type of bag or container is fine as long as it protects your meter etc. from getting damaged. You may prefer to get a bag big enough to hold glucose sweets etc. for hypos. The important thing is to get a bag that keeps all your bits and pieces together and that you are comfortable taking with your everywhere.
- Parents of small children: with all the paraphernalia you normally carry around it would be easy to forget to bring all the T1 bits which are essential for your child. Get a bag that is different from the rest of your bags. One that clips onto other bags easily might be helpful (that way you won’t leave it after you when taking out other bits and pieces from the bag).
- If you think you may forget (or have already forgotten) to bring your kit with you put a note on the front door or beside your car/house keys until you get used to bringing it everywhere.
- Every evening, check that you have enough supplies in your kit for the next day. This only takes a minute. Top up needles, lancets, insulin etc.
- BG levels: Don’t feel bad when your blood glucose is not in range. It is impossible to have perfect BG results all the time. Always ask yourself why they are high/low. You will usually figure it out, but sometimes there is no reason for unexpected readings. The important thing is to deal with them.
- You may have been given a diet to follow until you get the correct insulin dose established. It may be boring but worth doing for a couple of weeks to get your BG levels stable and give you time to understand food and its effect on your BG. Once BG is settled you will be able to eat whatever you choose.
- You will need your partner/family/friend to help you cope with T1. Explain to them what you have been told and ask for their support. When you have hypos you may need their assistance from time to time, so it’s important they understand the basics of T1.
- Go through your fridge and food cupboards and look at the carbohydrate values of the food you normally eat. You will need to know what foods have no carbs, some carbs and very high carbs. Print a list of carbs in food and leave it in your kitchen or use a carb app on your phone. It takes a while to get into carb counting for insulin, but you get used to it and its worth the effort.
- Don’t buy food labelled ‘low sugar, suitable for diabetic’s’. These labels are very misleading. They usually are lower in sugar, but contain other nasty ingredients. They are usually more expensive and give no extra ‘food value’. The best foods for everybody are fresh unprocessed foods. When you get used to the basics of T1 you may want to make change to what you eat and I hope my articles and recipes will give you plenty of inspiration.
- For the first few weeks consider taking your lunch to school/work, so that you know exactly what you are eating. Alternatively, have foods that are easy to determine how many carbs they contain.
- Boring but necessary, keep a T1 diary for a few weeks at least.
Write down the following:
- Record the time you did BG checks and the readings.
- How much insulin you gave and the time you gave it.
- What you ate, the portion size and at what time (you will understand why this matters as you get used to T1).
- Exercise type, the length of time and at what time.
- Record the time and the BG level if you have any hypos. Also record how you noticed the hypo coming on (e.g. feeling faint, sweaty, just generally unwell).
- Also note what you did about high BG’s (you need to give extra insulin, but in a controlled way).
You will learn a lot from this information. Use a software version if you have it. Some BG meters allow carb values to be entered and will download showing BG readings and carbs consumed. This is helpful but you won’t remember what you actually ate and how it affected your BG. Some carbs behave differently to others (30g of carbs in a chocolate bar will behave differently to 30g carbs in wholemeal bread) and affect some people’s BG levels differently, so writing down what you actually ate is good until you get used to it.
Take the time to look over your day’s BG levels at different times of the day, what you ate, exercise etc. and see if you see a pattern. Compare it to the day before. Some reasons for unexpected results are:
- Portion size on the pack said 45g but you looked at the ‘per 100g’ part of the label and gave insulin for 100g – resulting in a low BG (hypo) an hour and a half later.
- You had a high/low BG before you ate but forgot to adjust your insulin dose to correct it.
- You forgot to give insulin for sweets you ate – high BG an hour later, but not noticed until next test which was 4 hours later.
- You gave insulin for a meal but only ate half the carb portion of it because you got called away. If you have given insulin, make sure you eat the carbs for it or eat a couple of sweets to make up for the missing carbs.
It is well worth doing this for the first few weeks or if you have T1 for a while but are finding it difficult to maintain BG levels at your desired level. I still do it for a few days, occasionally to keep on track.
- Exercise helps stabilise BG but you must check your BG before any type of exercise and never exercise when you BG is low. Your BG needs to be higher than normal prior to intense exercise. Your Dr will be able to advise. Always carry a suitable form of glucose in case you go low while exercising.
- Make sure your meter and tests strips are beside your bed every night. If you feel unwell during the night due to a hypo you won’t be in great shape for finding your meter in another room. Keep a hypo kit in your bedside locker (e.g. glucose, fruit juice, jelly sweets). Get into the habit of replenishing these the next day if you have used them. See hypo article.
- Diabetes control isn’t just dependent on food intake. Exercise, stress and sleep make a difference too.
- Get a spare meter if you can or check out where you can get a new one if yours breaks down. Don’t panic if yours doesn’t work. Take your insulin as normal and eat what you normally eat but be particularly vigilant about noticing signs of a hypo. Get in contact with your pharmacy or medical support team immediately to get your meter checked out or get a new meter.
- Don’t expect to understand diabetes quickly. It’s a constant learning experience. I’m still learning after 50 years. Technology improves, food changes, life styles changes (holidays, illness, pregnancy, school/work, other medications).
- You must inform DVLA or relevant driving authority in your country and your insurance company immediately once you start taking insulin. From the first day, do not drive if you’re BG is under 5. See my article on driving.
- Don’t listen to other people’s opinions about T1. Uninformed people often have notions about cures for diabetes (e.g. if you eat a healthy diet or take a particular herb or drink you will be cured). If any of these were true I would have been cured many years ago. Unless they have it themselves they have no idea what they are talking about. This is about you and you are in charge of managing your diabetes, getting the best advice and support available and living a full and healthy life.
T1 = type 1 diabetes
BG = blood glucose or blood sugar