If you have Type 1 Diabetes, it can sometimes feel like you’re trapped in an extremely confusing maze. There is so much information out there, and a lot of it is contradictory.
Websites, television, newspapers, different medical personnel, friends and family, and sometimes even complete strangers all seem to have something to say on the subject, and that can naturally be overwhelming!
So where do you start if you want to try and get to grips with things?
These are ten tips that might help you find your direction, and show you simple ways that you can control the parts of Type 1 that are controllable.
1: Don’t be afraid to ask the ‘stupid’ questions
Whether you’ve been living with diabetes for fifty years, or have just been diagnosed, don’t ever be afraid to ask what you think is a ‘stupid’ or embarrassing question for fear that you might look foolish.
As with every medical question, there will be someone who has asked it before. Better to feel like a fool for a moment, than feel like a fool forever, so the saying goes.
The longer that you sit on something that’s bothering you, the more it will become a big weight hanging over you. Health care professionals are there to help you.
At the end of the day, any health care professional worth their salt would much rather deal with a query regarding your health than have you keep the problem to yourself and worry.
2: Don’t believe the ‘myths’ about diabetes
Don’t always believe what you see or hear in the mass media about Type 1. Sadly the many of articles are riddled with misconceptions, and you will encounter people who’ll tell you horror stories about their brother’s friend’s sister’s grandmother who lost her legs, or went blind.
Or just as frustrating, you’ll get people (who are mostly well meaning but misguided), who will tell you that you’ll ‘cure’ your diabetes by cutting out carbohydrates, drinking special grass juice, or eating this rare berry that they discovered on the internet.
The good new though, is that while negative myths and misconceptions can be unbelievably frustrating and annoying, they aren’t actually true. Type 1 Diabetes is not a death sentence. Complications, whilst possible, are not inevitable.
It is perfectly possible to live a full, happy and healthy life with Type 1. Playing sports, driving, having children – there is no reason that you cannot do any of these things. Unfortunately, there are still some blanket bans in place for people with Type 1 (and those with Type 2 using insulin) in certain careers.
This doesn’t mean that diabetes has to stand in your way of achieving the things you want to do. People with diabetes have won Olympic medals, climbed mountains, been singers, judges, film stars, dancers, prolific business men and women, and more things than it is possible to list.
Sometimes you might need to work around some obstacles, but it need not stand in your way
3: Do forward plan
Planning ahead might not be the most fun thing to do, but it will save you a lot of time and grief in the long run.
There are a lot of different things to manage and juggle when it comes to living with diabetes, which can seem both daunting and overwhelming – particularly if you’re newly diagnosed, and might not have much experience navigating the maze of the medical system.
One of your best investments is a good personal organiser. Having a centralised place to keep track of appointments, repeat prescriptions, numbers of your care team, pharmacy, insurance company (if you’re in a country where you have to deal with that), will prove invaluable.
It also gives you a place to mark down strange results, carbohydrate values, and more.
There will be plenty of evenings where you won’t want to make food. Pre-empt this, and think about making extras which freeze well, and you’ll always have a nutritious ready meal at your disposal. Carb count it and write the value on the container, and you’re good to go.
Keeping track of your appointments and your levels of supplies is really important. It’s crucial to make sure that you don’t get to a point where it’s a weekend and you’ve run out of needles or test strips, or you’re due a prescription review, but you’ll run out of insulin before you can get an appointment.
Forward planning also helps you avoid getting caught out in an annoying situation. If you’re traveling try to always take a little something extra to eat with you in case you’re delayed in some way.
Carrying a pocket size carb counting book, such as the Collins Gem Carb Counter means that if you don’t have access to carbohydrate values for food whilst you’re out and about, you will always have some frame of reference from which to make an educated estimate.
4: Don’t always accept the first treatment option offered as the right one
Type 1 Diabetes is a complex disease, and the ways it affects person to person can vary widely. Different people will also naturally have radically different lifestyles. So what is appropriate and effective for one person, might be completely wrong for the next.
The good news is that there are plenty of options out there. Mixed insulins, which combine basal (long acting) and bolus (rapid acting) insulins into one injection, usually given twice daily, are difficult to work with for many people. They are sometimes used as a way of introducing a person to injecting when newly diagnosed.
Many people find that they spend a lot of time trying to ‘feed’ the insulin, as an extremely fixed routine of mealtimes is required for this regime to be effective. Most struggle to get good control in this way, and find recurring low levels mid morning, and high levels in the afternoons and evenings.
While some people achieve good management of their blood sugar levels with mixed insulins, should you find yourself struggling on mixed insulins, you can always request to be switched to multiple daily injections (MDI).
MDI separates out the basal and bolus insulins into separate injections, with each meal having its insulin calculated (normally via counting carbohydrates in the food), and injecting the appropriate amount.
The basal insulin will usually be given at a regular time once a day, although some people find splitting their dose into two is more effective.
Many people find that MDI offers a greater amount of flexibility in their routine, and allows greater ease in managing things such as eating out, or working in an environment with a less rigid schedule.
Insulin Pump Therapy is another alternative, which many with Type 1 find an attractive option. In this, a cannula is attached to the pump user, and insulin is delivered via tubing from a small device, about the size of an average mobile telephone or pager.
The cannulas are usually changed approximately every three days, which means that all insulin needs can be delivered through that one port, thus removing the need for injections. Pumping offers the advantage of being able to make small, subtle changes throughout the day.
There are lots of extremely informative sites on the subject of pumping, if this is something that interests you.
The main thing is to not let yourself be pressured into maintaining a treatment type that you are not comfortable with. As previously stated, different options will be better suited to some people than others. Just as there are different methods of delivery, there are also different insulins, which have differing profiles and actions.
Talk to your health care team, and research your options from reputable sources. You might find that a regime that you hadn’t previously considered may actually be ideally suited to your needs.
5: Do find the fun wherever you can
Diabetes is a chronic disease. Until a cure is found, it’s not going to go away. Unfortunately that’s the truth, and it’s not always easy to hear. That’s why it’s important to find ways to put some fun into managing yours.
Things don’t have to be clinical and sterile. If you start thinking of ways, there are lots of places that you can inject a bit of colour and fun into your management. For the ladies, that might be investing in a gorgeous new handbag – trust me, a roomy one is a good investment.
For both men and women, finding a kit bag that has room for all your bits and pieces, and reflects your taste is a nice way of stamping your personality on things. Dittibags, Desang, Skidaddle Bags and Stick Me Designs all have plenty of beautiful options to choose from.
All a lot more individual than that plain black case that comes with your meter! Hanky Pancreas also has a lot of fashionable ways of jazzing up your insulin pump, for those using them.
Think about finding a stylish medical alert necklace or bracelet. There are plenty of good sites out there. Check out Icegems as a starting point. These days, medical jewelery need not be the heavy, ugly bracelets and chains you might have in mind.
There are numerous sites offering something for every taste. Or if you can’t find anything to yours, there’s always the option of guaranteeing no-one out will have the same by making your own!
6: Do think about exercise – but think outside the box
When you bring up the subject of exercise, many people’s minds jump straight to either running or the gym. You might find one of these things instantly appealing, which is brilliant. Yet it’s far more likely that you’re completely turned off by the thought of either one. What you might not have realised is that that’s actually OK.
Exercise is so important, not just for those living with Type 1, but for everyone. We all hear how it can help us live longer, fuller lives, but the thing is that it’s actually true. Exercise does help us feel better, as it helps release Endorphins, which naturally lift your mood.
Exercise also helps many people in maintaining good blood sugar levels. However, it is best to consult with your team before starting an exercise plan for the first time, especially if you’re not used to it. You will need to make sure you’re at a suitable blood sugar level before beginning, and have the appropriate supplies with you to keep you safe throughout.
With all that aside though, here comes the fun bit – finding a type of exercise that you enjoy and love! The only real limit is your imagination. Team sports and exercise classes are always classics. Swimming and cycling are also popular.
But what about taking up dancing?
Ballroom, Latin, salsa, street dance, ballet, jazz or tap are all amazing forms of exercise, but to name a few. Perhaps you’ve always fancied learning to rock climb, trampoline or abseil?
If you’re not that adventurous, what about orienteering? There’s also absolutely nothing wrong with going for a nice long walk with a loved one, or spending some time playing catch with your dog.
Also, if it’s for no other reason than to get the chores done, housework and gardening have also been known to burn more than a few calories!
7: Do find a meter that suits you
There are so many blood glucose meters on the market that it’s easy to get overwhelmed with the choices. It all very much depends on what you want from your meter.
One of the most inventive and ‘smart’ meters out there at the moment, is the Contour USB meter from Bayer, which plugs straight into your computer, and uploads your results, turning them in to graphs and trends.
However, there are plenty of other quality meters available. It’s worth looking into the variety available. Try making a ‘wish list’ of things that you would like your meter to do, and research your options. Many of the companies who make meters are happy to send you a meter free of charge if you contact them, as test strips, not meters, are where they make the money. Call or email them, and discuss what you’re looking for – you might be surprised how helpful and accommodating they’ll be.
8: Do let your fingers do the walking
You might not be aware of the amazing number of resources available to you online. Whilst you always need to discuss any changes you want to make to your treatment with your health care team, there are lots of interesting sites which are well worth your time having a look at.
There are also a number of wonderful writers out there chronicling their lives with Type 1. Many people find writing a blog to be an amazingly helpful process. Blogger is a free and easy way of doing this.
9: Don’t write off your friends and family
Many people talk again and again about how living with Type 1 Diabetes can feel isolating. As a disease that requires constant management, understandably there will be times where it will feel like a large weight that you have to carry, and it seems like those around you just don’t understand.
However, even though your friends and family might not totally understand and appreciate what you go through, or completely understand how Type 1 impacts things, more often than not they will understand you.
Never assume that a friend or family member will automatically know how you’re feeling, what you need, or even what you’re talking about. Unless you’ve previously talked about a problem, they’re probably not a mind reader!
However, you are their friend, or relative, and if you talk with them, a lot of times you’ll find that they might well surprise you. People that you might not think would be interested can turn out to be an amazing support network.
They may well want to give you support, but not know how to ask, or what might be appropriate – some may well even believe many of the common misconceptions about Type 1 and be frightened for you.
If you can get a conversation going, it may well be easier than you think to calm any fears they might have, and help talk them through the basics.
10: Don’t lose perspective
An important thing to remember is that you are not your diabetes. You are almost certainly a person with many different interests and passions. Type 1 is just one part of that, and keeping diabetes as just a part of your life, (albeit an important one) rather than firmly in the centre, might not be easy at first, but it is a really good idea.
Sometimes it can be quite difficult to do, but it is important to realise that if you have a bad day, diabetes wise, it does not mean that you are a bad person, or that you’ve necessarily done something wrong.
Things will vary day to day, and there are no guarantees that things will always go to plan – the human body doesn’t work like that. When simple things such as stress, temperature, or walking an extra mile more than you planned can radically change things, you can see that it’s unlikely that any two days will be identical.
In the grand scheme of things, an occasional high or low score, though not ideal, is not the end of the world, and is really rather inevitable. Playing the ‘blame game’ doesn’t help anything, and only really serves to make you feel bad about yourself.
If something goes wrong, it goes wrong, and the best thing you can try to do is learn from it. In that way, you can try to take a positive outcome from a negative experience, which can help to make you feel more in control of things – and that can only be a good thing.
Becky was diagnosed with Type 1 Diabetes in May 2009. She writes a regular blog, Instructions Not Included about life with Type 1. She lives in the UK, and works in the theatre as an administrator and freelance practitioner.