A life of control
Life with diabetes is closely connected with the word “control. When diagnosed with diabetes there is usually a sense of being “out of control” and talk around you from mostly well meaning people, that you need to “take control”. There can be many reasons why it is hard to get, maintain, or hold onto, control – not just of diabetes but a range of things in life.
Much of the talk about control in diabetes relates to the practical management – “eat healthy, exercise, don’t smoke, don’t drink, cut down salt, sleep well, take your medication/insulin and check your blood glucose”.
But not a lot is said about how to do these things?
- What choices do you have and what impact might these choices have?
- What about the rest of your life?
- How can you make these changes when you actually have a life?
The practical tasks of diabetes sit on the background of the emotions, thoughts, feelings, worries and anxieties you may have about diabetes and about the rest of your life.
Often the way we think about things, including diabetes, can distract us from being “present” and getting on with life – if we hold on too tightly to our thoughts and problems it is really hard to see what is happening around us. Nobody wants diabetes, let’s face it – there are many times we experience pain and negative or unwanted thoughts and feelings about it, but being able to “hang” with our diabetes, sit it on our laps in a sense, enables us to get on with life – including the tasks required in diabetes care. This can help to maintain a sense of control.
Being a parent
If you are a parent or loved one, you will also have a role to play in the “control” of diabetes in yours and your child’s lives. Many thoughts and feelings will fill you up when your child is diagnosed with diabetes and these thoughts and feelings can bring pain.
Parents later have to let go of control in their children’s lives as they grow up and this can be especially tough for parents of children with diabetes who can struggle with who has control of various parts of their young person’s life and their diabetes.
If we could switch off this pain with a magic button, you would never have to feel it again, but you would also never care again about your child – what would you choose? Most people say they would choose to keep the pain, as with caring comes pain – that is part of being human.
Control and Guilt
Control is something that can have both positive and negative meanings. Sometimes things like “guilt” get wrapped up in this, for example when it seems things are not in control. People who live with problems such as Eating Disorders tell us that they try to gain control of their lives by controlling food, their weight, or both.
Uncomfortable thoughts, experiences, worries, feelings and so on, can take over our every waking moment and things like controlling food, exercise, use of drugs or alcohol – these are all ways we try to avoid these painful thoughts and feelings. This type of control is destructive to both the person and their loved ones, as well as their diabetes.
In the short term you may have some relief, but in the longer term, this increases the negative and painful thoughts and feelings and a vicious cycle is set in motion. If you constantly try NOT to think about something it tends to have the opposite effect! Learning to “accept” or hang with these things is more helpful.
There is no question that feeling a sense of control over your life gives you a sense of wellbeing and of peace in your life. People need to feel in control and we need to be able to find ways to control diabetes as far as is possible.
Guilt is often present in diabetes – guilt about getting diabetes; about passing it on to your child; about your child going away to camp, or not having sleep overs when they have diabetes, or leaving them with a sitter for the first time; about being overweight and “causing it” yourself; about eating or not eating something; checking or not checking blood glucose; taking or not taking medication and insulin – and the list goes on.
Letting go of Guilt
Guilt is unhelpful and often based on unfounded facts – it is better to be gentler on yourself and see that you are first and foremost a human being and somewhere lower down on the list, you are a person with diabetes or loved one of someone with diabetes; and/or you made the best decision you could at the time, then move on.
If the decision was not one you want to repeat – learn from it – and make sure you have the knowledge and support to make a different choice next time.
This is especially true with things like food choices, insulin doses, BGL’s and exercise choices. If it is more a scary but important decision being hampered by guilt, such as learning to leave your child with someone else, make sure you have support so you can take these important steps without the guilt.
Taking control does involve making healthy choices about food, exercise, alcohol, drugs, socialising, blood glucose management, and so on – but it is also about looking after your wellbeing, your mental health, your social and family lives, the impact that diabetes has in your life and how to make this as small as you can – a feeling you can live a happy and healthy life – a sense of hope and positive energy about your future despite diabetes.
Choices in diabetes management
How you choose to manage your diabetes may have powerful consequences. What may seem a small thing, such as type of insulin; how you deliver this – by pump, pen or syringe; the blood glucose monitor you use and how often you monitor – can be huge things in your diabetes management, ability to take control and how you feel about yourself and your diabetes.
What kind of diabetes manager are you?
Looking at what you would like people to say about you at your funeral might sound odd, but it can be a good way to find out what is important to you in life – for example would you want people to say “he was a really good diabetic”? Or “he could stick at things and work them out”;”she had great insight into her body and what she needed to do to look after it”; “he managed against the odds”; “she had a great sense of humour!”.
This can help to find out what really matters to you in life and these are the things that guide you to take actions in getting and maintaining motivation and control over managing diabetes and other areas of life.
Taking control of your diet and food
Issues to consider around food include:
- What sort of dietary “management” is needed for your particular situation?
- What type of diabetes you have?
- How old are you?
- Are you are very active or not?
- Are you male or female?
- Do you want to lose, maintain or gain weight?
- What types of foods do you enjoy and want to have in your eating plan?
- Does food factor much in your diabetes management? For example do you want to have a low carbs, and/or low GI carbs eating plan? How about portion sizes? What about built in treats? What will you use for hypo management? What about exercise carbohydrates?
- Are there issues to consider such as your culture or religion, family eating habits and daily routines with work or study that impact on the way you eat, when you eat and so on?
- What is your financial position and are there any restrictions on your weekly food budget?
- Would you benefit from some input from an dietitian? This may be to revisit your understanding of carbohydrate management; find out what is new in terms of diabetes and food if you have had it for a long time – things change rapidly; weight management support; or any other reason why you feel some outside support and input may be helpful.
- What is your history and relationship with food – how do you feel and think about food? Perhaps you don’t think about food – it may be that being conscious about food and how you think about it, can help you to manage better.
These are the kinds of questions you can think about and discuss with your diabetes team, so that you develop a realistic and healthy relationship with food that not only makes diabetes management easier, but makes food just a regular part of life and not something that needs to dominate things. You can read more at our Food and Weight Matters pages here
Taking control of your exercise and activity
Issues to consider around exercise include:
- Your age and fitness level
- How much time do you have for formal exercise and how much you can build incidental activity into your day?
- What type of diabetes you have? People with type 1 in particular have hypo management to work out with exercise and this can become frustrating and disheartening; people with type 2 diabetes are often trying to lose weight and may have some physical restrictions for exercise
- Do you have any physical restrictions?
- Think hard about what physical activity you have enjoyed the most in your life? This is the most likely thing you will stick at – do you like solo or group based activity for example? Do you like to be indoors or outdoors? Do you like routine or variation? Do you want to combine aerobic and strength based exercise? How motivated are you?
- With type 1 diabetes, how will you prepare and manage blood glucose? What will you do if you plan exercise which does not happen? How about if you have unplanned activity- how will you deal with the risk of a hypo? How to minimise hypos and increase the weight management aspects of exercise with type 1 diabetes?
- If you have type 2 diabetes and have physical limitations, have not exercise before and/or feel embarrassed due to being obese or overweight when exercising – what can you do to feel better about this, so you can get out and exercise? Would counselling, or other support be helpful? What about specialised groups such as walking groups, Heartmoves and Lift for Life? Look around for resources to support you on this journey.
- What sorts of ideas, thoughts or stories do you have about exercise? We all have them! For example, when the weather is better, then I will go walking; when my knee is better, then I will go to the gym; when work is not so busy, then I will go to the pool” – these “When, Then” stories are something we all have in many areas of life and they are not helpful!
- If you are constantly waiting for the perfect time to exercise – don’t! There is no better time than the present and the barriers to exercise can be broken down when you can consider all of the above elements.
And finally how will exercise assist you in your life?
It is not just about a healthy heart and body, exercise also increased feel good hormones, reduces stress, helps us sleep and makes us feel we are doing something positive for our health – so it is a very important thing to work out how you can stick at it for your whole life.
Maybe you are better off walking to the playground with the kids and playing with them if you have a young family, so you all benefit? Or walking the dog so he also gets a workout! Exercise Physiologists are wonderful support to assist with working out how to build exercise into your life. Hop onto our Diabetes and Exercise page for more.
Taking control of Blood Glucose Monitoring (BGM)
BGM is an unwanted but critical part of diabetes control. However there is no set standard when it comes to choosing a monitor, or deciding how many times a day, week, month, to check your blood glucose. This can make it very confusing!
Type 1 diabetes
Generally, you can consider that in type 1 diabetes, you will need to do a minimum of 4 – 6 blood glucose checks a day ( and calling it “checks” and not “tests” can have a big impact on your feelings as checking is a guide, testing is…well a test)
Many people with type 1 diabetes do more than 6 checks a day. On an insulin pump you may do many more. It is also important to remember that on sick days, at times of high activity or exercise and other unusual situations outside every day routine – more BG checks are needed.
How often you check depends on why you are checking, what you will do with the results and how you will feel about the numbers.
In type 1 it is important to check regularly so that you can monitor for high and low blood glucose; make adjustments to insulin for high readings and catch low ones; manage the dose needed for the carbohydrates you are eating. It also has safety purposes, such as when driving, working or looking after children – it is important to know what your BGL’s are so you can be sure you are in a safe range and not going to lead to a danger for yourself or anyone else.
There are a few reasons to check BGL’s in type 1 that assist your control:
- to keep track of what is happening with your diabetes overall and on a daily basis
- to monitor impact when there are management changes – such as with hormonal changes, pregnancy, growing up, changes from injections to pumps, change of insulin, a new diagnosis of another condition or introduction of a medication that may impact on BGL’s
- to manage sick days and prevent ketones and hospitalisation
- to manage BGL’s when in hospital for surgery or other reason
- to manage exercise
- to prevent low and high BGL’s
- to ensure you and others are safe
- to manage the food you eat
- to make you feel better about how things are travelling on a daily basis and reduce anxiety
And overall, to get some sense of control and ability to make necessary changes.
Type 1 diabetes can present a roller coaster ride within a day, or even from hour to hour, so BGM becomes critical. BGM also becomes very wrapped up in mental health and wellbeing. The results of BGM can seem like a test of what kind of person or what kind of “diabetic” you are, leading to you feeling down on yourself if the results are not what you would like.
It can become a huge stress and a ‘symbol” of your diabetes – so if you are having a hard time, are feeling burnt out and unmotivated, not checking BGL’s can feel like a way of ‘rebelling” against diabetes.
However the background stress of knowing that you actually don’t have any idea what is happening with your diabetes will build up and ultimately have the opposite effect, with you feeling more stressed and more burnt out.
Stopping to check BGL’s can really assist in feeling in control. Sometimes you may need to ease back on this, if you are doing a lot of BGM and feeling burn out, try doing less checks, rather than none and giving yourself some time out whilst still maintaining control. The way you think about results and what goes on in your head can really undermine this one – so try to tune into this and see the thoughts that run through the background around BGM.
Type 2 diabetes
In type 2 diabetes there may be no need to monitor BGL’s at home at all, or you may need to be checking the 4 – 6 times a day and anything in between! This depends on whether you are newly diagnosed, have had type 2 diabetes for a long time, are on diet control, medications and what type, or on insulin. Some of the reasons for BGM at home in type 2 diabetes include:
- Just diagnosed and need to get an idea of what is happening
- Changing management – to medications, different medications or insulin ( the vast majority of people with type 2 will eventually need an insulin injection or more down the track)
- Illness or other medical condition or surgery/hospital admission
- You want to do regular checks as you like to see what is happening from day to day
Often with type 2 diabetes, initially there is no need for checking BGL’s at home, or just to get some idea of what is happening. Your GP and or diabetes educator should discuss this with you at diagnosis.
If the outcome if for dietary management and lifestyle changes at first, then it may not be necessary to do any BGL checks at home for a while. The doctor will use your 3 monthly HbA1c check to see how things are going as it gives an average over the past 8 – 12 weeks.
You should have some say in whether you want to do some checks at home or not. Some people will do a few checks a day, or a few a week and if this is the case, it is helpful to do them at a range of times, to get some overall patterns.
If you are on a medication that can lead to hypos and/or insulin, then checking up to 4 times a day is usually recommended. As with type 1 diabetes, exercise and activity, missed meals and illness can affect your BGL’s and so a closer watch is needed.
Many people with type 2 diabetes get mixed up with all the conflicting information about BGM and it is important to ask questions and also be clear about what you want to do at home when it comes to BGM. It is also true that BGM can become a real stress and lead to people feeling depressed and worried – if this is the case it is also important to work out what is going to be best for you and speak up!
What kind of meter?
The type of blood glucose monitor you choose is really a personal choice. It can also have an impact on your lifestyle and your ability to check your BGL’s. There are now blood glucose monitors which have very fast 5 second check times and which have a range of strips and ways of working to suit different lifestyles. There is even one that connects to your iphone! The size, wait time and type of strip will all affect how likely you are to check your BGL’s so it is important to think about what will work best for you.
Insulin Delivery Devices
Insulin is at the centre of most people’s minds when it comes to diabetes. This discovery by Banting and Best in 1922 and the remarkable change which paved the way to the development of modern Insulin, is the thing that keeps many people alive and well today. In our current era we have many types of insulin and many ways of delivering this – which means we have much better ways to take control of diabetes.
Different insulin for different types!
We know now that people with type 1 diabetes can have a slower onset of the disease if diagnosed as adults and that the honeymoon period, where some of your own insulin is still circulating, can vary from person to person and be a lot longer in an adult. We also know that people with type 2 diabetes will eventually need insulin injections in most cases. So the lines have blurred and we do not talk about Insulin Dependent and Non Insulin Dependent Diabetes anymore.
Many people have a fear of injections and lots of people with type 2 diabetes see insulin as “the end of the line”. These kinds of thoughts are not helpful. In fact most people with type 2 diabetes say they wish they had started insulin earlier once they do begin insulin injections as they feel so much better. People with type 1 diabetes have no choice – it is insulin from the start.
There are currently 3 basic ways to get your insulin:
- Insulin syringe
- Insulin pen
- Insulin Pump
Other ways such as inhaled insulin and insulin patches are being explored but are not currently available in Australia.
Most people with type 2 diabetes require 1 insulin injection at bed time initially, often building up down the track to 1 or 2 injections with meals as well. But this varies from person to person, as does the dose. Some people with very high insulin resistance require very high doses of insulin. Most people will use a syringe or pen to inject.
People with type 1 diabetes are usually using insulin pens now, or insulin pumps. Of course a person with type 1 diabetes requires more regular doses of insulin in the majority of cases.
Most importantly, making decisions and taking control of your diabetes self management will put you in the centre of your management team.