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How to stand up to the fear of diabetes

January 16, 2015 by Helen-Edwards 2 Comments

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I was thinking the other day that if someone could just come up with a way to check blood glucose that does not require turning your fingers into blackened stubs, where multiple areas bleed when you squeeze for one blood test, and they could eliminate hypos, I would be ok with having diabetes.

There are many parts of it I dislike, but these are two of my most hated. In fact the hypos thing is probably the biggest fear for me. And that is the bottom line toughest part of life with diabetes when we break it all down isn’t it, the fear.

It is not that you have to eat healthy, be active, get your rest, plenty of sunshine, check your feet, visit more doctors than usual and reduce your stress. These are all good for you. It is not that you have to take medications or have multiple daily injections or lived attached to a machine, even though that is annoying and sometimes frustrating. It is not even the fact you have a chronic disease that can’t be cured. It is the cold hard fear.

It’s waking up in the morning with a high blood glucose level and having to decide whether to eat breakfast or wait, worrying about whether you are going to end up higher and feel like crap, or dive into a hypo from your correction dose of insulin, and feel like crap….It is sitting up late at night when everyone else is in bed, waiting to see if your levels are going to settle as they have been too high or too low. It’s managing the swings and ups and downs, often alone and not knowing when it will stop.

It is going out on a run, to the gym, dancing, drinking, on holidays, hiking, skiing, having sex, even a walk around the block – and not knowing if you might end up low or high. It is the fear of the unknown. And the fear of the known. The fear that gets drilled into you when you get diagnosed and reminded to you every time you look at a national diabetes week, or world diabetes day poster. It’s sleeping, waking, eating, fasting, sitting, standing, lying, existing – with FEAR.

It’s exhaustion. Which makes fear worse.

It’s all those things that can go wrong, break, stop working, fall off or be chopped off. It is blindness and dialysis and horrible feet. It’s not having babies, or having babies and then trying not to breathe the entire time you are pregnant in case it messes up your blood sugar and harms your precious baby.

It’s working hard in your career and your life dreams and not knowing if your diabetes will cause a problem you don’t want your colleagues to find out about. It’s failing exams because your levels were so high you couldn’t think straight. The stress of losing your license when your job is driving trucks. Losing your ability to make love. Losing your partner. Losing your grip.

Yes indeed, diabetes is a whole lot about fear and a whole lot less about the mechanics of it all, a whole lot less about the actual act of caring for your diabetes. People will tell you that you are “non compliant”, not managing well, not getting it. That is bullshit. You are probably scared. You are probably confused. You are probably exhausted.

Fear creeps up on you, takes hold of you, hangs around in dark corners, jumps out at you from under the bed.

Fear is a bitch.

And if someone could only take away that fear for me, I would be pretty ok with having diabetes, it is not the worst thing to have. The truth is, nobody is going to do that for you but YOU. If you are like me, and fear has a grip on your life with diabetes at times, the only way we can stand up to that fear is together, and alone.

We must take time to notice these fears, to pull them out from under the covers. We must take time to shine a light on them, share them – please don’t suffer fear in silence. Learn how to be more mindful, how to manage fears, how to be more centered, more peaceful. You don’t need to learn how to be more brave – people with diabetes are some of the bravest people I have ever had the pleasure of knowing – and trust me over 15 years working in diabetes I have known many thousands.

By sharing these fears we reduce them. We feel safer, as there is safety in numbers. Fear will always be part of life with diabetes. It is scary. But we can reduce how much it impacts on our daily lives by setting up networks of support, help when we need it, talking about it and facing it head on. And in those moments when you are scared shitless, just remember we are all here holding your hand. We have your back and you CAN do it.

What do you fear most about life with diabetes – please share and get these things out into the spotlight

Helen

Helen Edwards has lived with type 1 diabetes since 1979. She is Mum to 3 sons, the founder of Diabetes Counselling Online, a diabetes educator, social worker and PhD Candidate studying diabetes distress in pregnancy for women with type 1 diabetes. She is also a successful Interiors Blogger and Stylist at www.recycledinteriors.org and runs creative workshops, an online store and studio in Adelaide – just for a life outside of diabetes.

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20 things I hate about diabetes

December 11, 2014 by Helen-Edwards 22 Comments

Sometimes I get sick of telling people that their diabetes will be ok, and they will be ok, and everything will be ok. Not because I don’t believe that to be true, I do. I think everything WILL be ok. But damn it, diabetes is NOT always ok. I am exhausted at the moment- are you? It is that whole end of year , nearly at Christmas, we can see the finish line thing.

My 6 year old Maxwell got up today and fell asleep on the couch for a minute or two, and then jumped awake shouting, “I wasn’t asleep!”He gets that from his Dad.

And my 15 year old couldn’t manage day 4 of work experience. I know his problem.

The thing is, not only am I exhausted from working bloody hard and sleeping very little all year. I am exhausted from managing diabetes. Do you know what I mean? It has NOT been ok. I have had swings from highs to lows and sudden hypos that freaked me out and stubborn highs. My gut problems from gastroparesis continue to play with me. And some days lately I have felt like maybe it WON’T be ok…..

So here are 20 things I hate about diabetes (coz we all have to get this crap out sometimes – try it, it helps!) Feel free to share and comment if you feel the same or want to add to the list

1) It’s so damn unpredictable and never ending

2) Finding spots for finger pricks after 35 years and up to 20 tests a day is pretty hard – you should see my fingers, they are a mess…..

3) There are no perfectly 100 % accurate blood glucose monitors and do you KNOW how much difference a 1 or 2 mmol reading can make to some of us with type 1??

4) My skin is stuffed and finding sites for my pump continues to be a delight of each and every day

5) Hypos, especially sudden ones where I go under 3 mmol freak me out

6) Hypers, especially unexpected ones where I go over 16 mmol freak me out

7) People ask me all the time in airports to “take the pager off” as I go through the scanner

8) It is exhausting

9) The general public don’t get it. They think it is simple.

10) It has damaged areas of my body that I am terrified will just get worse…

11) Exercise is a debacle, you need a PhD and even then your theories will be challenged every time you go out for a run

12) There is no spontaneity

13) Leaving home to go out involves lugging a suitcase with you

14) Carbs Carbs Carbs you are such a challenge – can’t live with em, can’t live without em

15) I worry that my children will get diabetes

16) I worry about losing my blood machine or breaking my pump, or forgetting to put it on after a shower – being reliant on machines to keep you alive is stressful

17) It costs a LOT and we should have a concession card- all of our lives

18) It keeps me awake at night- sometimes sitting up to make sure my levels are not too high or too low before going to sleep

19) All the “I quit sugar” people give me the shits

20) It is for life. It isn’t going anywhere fast. The promised cures never come. This is IT.

Rant over.

Oh and you know it WILL be ok. It always is in the end. But sometimes you just gotta get this stuff out. If you are feeling like me- please comment and share. You will feel better trust me and at least we know we are all in it together next time you are sitting up at night, or screaming at your blood glucose machine.

Helen

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World Diabetes Day 2014, taking control of diabetes & letting go of guilt

November 13, 2014 by Helen-Edwards Leave a Comment

It is World Diabetes Day tomorrow, 14th November and much focus is spent on prevention of diabetes and living well.

World Diabetes Day (WDD) is celebrated every year on November 14. The World Diabetes Day campaign is led by the International Diabetes Federation (IDF) and its member associations. It engages millions of people worldwide in diabetes advocacy and awareness. World Diabetes Day was created in 1991 by the International Diabetes Federation and the World Health Organization in response to growing concerns about the escalating health threat that diabetes now poses. World Diabetes Day became an official United Nations Day in 2007 with the passage of United Nation Resolution 61/225. The campaign draws attention to issues of paramount importance to the diabetes world and keeps diabetes firmly in the public spotlight.

World Diabetes Day is a campaign that features a new theme chosen by the International Diabetes Federation each year to address issues facing the global diabetes community. While the themed campaigns last the whole year, the day itself is celebrated on November 14, to mark the birthday of Frederick Banting who, along with Charles Best, first conceived the idea which led to the discovery of insulin in 1921.

Healthy Living and Diabetes is the World Diabetes Day theme for 2014-2016.

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. We believe that learning how to take control and feeling ok about life with diabetes is critical to healthy living when you have diabetes.

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 on an ongoing, forever kind of basis, like, for life!

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.

Read more here

Helen

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Juggling Wellness and Diabetes

September 15, 2014 by Sally Leave a Comment

I’m writing this personal kind of blog on a Saturday. I love Saturdays. They encompass lots of things I love to do which all contribute to my wellbeing. This morning I was out on my run and because it’s Saturday and lovely Spring weather lots of my neighbours were also out and about. Nearly everyone I ‘ran’ into made the comment about how well I looked. I had at least 3 such comments this morning and they inspired me to share with you what I believe to be the key to being well with diabetes, or what works for me anyway.

This is important to me because I have diabetes and I’m turning 50 next year, so I know that if I don’t focus on being well myself I’m in a higher risk group to lose my wellness that is so important to me. I want to do all I can to hold onto it for as long as I can, so I can enjoy more of this wonderful life. I’m also passionate about helping others to be well too to the best of their ability, so here goes!

Sleep

Every Saturday I get to sleep in. Yay! To catch up on a few hours I may have missed through the busy-ness of my week. Time to give my body a chance to repair and relax. I usually get to sleep in until around 8am, which is a big improvement on my 6-6.30am starts on other days of the week. The only thing that stops me from doing this is waking early with a hypo, but this morning my BGLs behaved themselves. This week I found an awesome article in The Conversation on the importance of sleep which I encourage you to read. It’s just so important for our wellbeing, and especially so for us with diabetes.

Eating Well

As a dietitian you would know that I am particularly passionate on this topic! This is the only topic in today’s blog that I’m qualified to talk about as a health professional, and it’s such an important one! The Australian Dietary Guidelines that we follow actually makes the comment, “Diet is arguably the single most important behavioural risk factor that can be improved to have a significant impact on health.” It is something that I think about, read up on and focus on every day.

Today I started with my fibre rich, low-GI and high nutrient breakfast, a combination of two cereals that enjoy eating together topped with skim milk. I had a banana for morning tea and a delicious bowl of vegetable and low-GI carb rich Minestrone soup. This afternoon I’ll probably have a snack of a handful of nuts and another piece of fruit. We have a delicious lean meat and vegetable rich stir-fry planned which we’ll serve with plain Basmati rice, and I’ve marked out my favourite Black Cherry yogurt for dessert.

I know that I’m getting the nutrients I need to be well each day, and I’m sure it must also reflect in my outward appearance when I’m out on my run, makeup free in my daggy running shorts too lol

Regular Exercise

Nice segway to the exercise! Also lots of evidence here to support wellbeing, reducing inflammation, improving mental health and keeping our BGLs more stable. You may know that I’m a golfer. I try to play 18 holes in a comp twice a week, and 9 holes if I have time as a break in my day on a Friday. On the days I’m not golfing I do my best to get in at least the minimum recommended 30 minutes of moderate physical activity. Usually I try for 45 minutes. Since I’ve been doing this I have noticed a big improvement in the stability of my glycemic control as my fitness has improved. It’s so worth the effort even when you don’t really feel like it!

Family Time/Love

I’m incredibly fortunate to have so much love and support from my family, but I guess it works both ways in that I also love and support them! I believe that love and giving love is an important part of wellbeing. We hug each other a lot in our household, and in the wider family too. Have you hugged someone today and told them you love them?

Being sociable

Although I was out on my run, I enjoy stopping along the way on a Saturday as I have more time available to me to chat with my lovely neighbours in the suburb I live in. I chat with the children, and the parents, and the older people, and the neighbours who are my friends. To me this is important as I feel loved within my community too, and I know that I’m helping some of these people to feel loved too <3

Hard Work

I enjoy working. It keeps my brain active. It gives me a purpose and keeps me inspired each day to stay well and make the most of my life. The lovely Helen Wilde called me a workaholic this week, which made me think. You know I probably am a workaholic, but that’s because I love what I do and it makes me happy to help other people to be well. But I honestly try very hard to keep a balance with the other important factors in my life.

For those of you who are lucky to be retired or not have to ‘work’ as such I would encourage some kind of volunteer role as it can really be so rewarding and contribute to your wellness. We have some awesome volunteers who help us out at Diabetes Counselling Online. You can read more about our team and some of our ambassadors here. They’re so important in making our charitable organisation what it is.

Keeping the Balance

Of course, being Saturday, I also have household chores to do, preparation cooking for the week ahead, and I might even fit in a quiet hour of reading a book. It’s always a good day, and means I really relax and enjoy myself on my day of rest (and golf) Sunday.

If you try to imagine all these aspects (including any others you may have yourself) as a number of balls that you’re juggling, I believe that remaining well is all about keeping a balance amongst them. Sometimes you need to drop one ball to keep the others going smoothly, but don’t forget it and go back to collect it as soon as you can. I don’t see diabetes as one of those balls – it’s just part of me and often influences how I manage some of those balls/aspects.

Hopefully some of this will inspire you to focus on keeping your balls in the juggle, and know where you can make some positive changes to improve your own wellness. Diabetes Counselling Online actually has a whole section on the website on Diabetes & Wellbeing. Check it out!

You know we’re here to help. With love, Sally.

Sally is the Social Media Dietitian with Diabetes Counselling Online, owner of her private practice (Marchini Nutrition), and has had type 1 diabetes for close to 40 years and coeliac disease for many years too. You can access a list of all Sally’s Diabetes Counselling Online blogs here.

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Tips to deal with a diabetes diagnosis

September 12, 2014 by Helen-Edwards Leave a Comment

Diagnosis of diabetes is like starting a “journey” on a road that is new and unfamiliar to you. It is not chosen and certainly not wanted! It is important to remember you carry all the other parts of your life with you.

Just because you get diabetes, the rest of your life still carries on.

At diagnosis you can experience:
- Shock
- Denial
- Fear
- Grief
- Loss
- Hopelessness
- and many other things

Family members can also experience these things and family relationships can change. These are normal experiences and feelings and people will work through them in time. However sometimes support is needed to adjust to life with diabetes and our counselling and education team can help.

TYPE 1 DIABETES

If you are diagnosed with type 1 diabetes as a child you may experience these feelings later, when you grow older and start to take responsibility for diabetes yourself and/or when diabetes impacts on your life in more ways. How you deal with the diagnosis of diabetes can be different depending on your age, personality and past experiences. The support around you is also important.

If you are diagnosed as a young adult with type 1 diabetes it can be tough as most of the information and support is targeted at children and teens and people do not expect to get type 1 diabetes in adulthood. This Starter Kit by The Type 1 diabetes network is very helpful.

Diabetes can cause conflict and pressure on the parent/teen/young adult relationship above what people without diabetes have to deal with in adolescence and young adulthood.

TYPE 2 DIABETES

If you are diagnosed with type 2 diabetes there can be a lot of guilt, blame and stigma – many people feel it is their fault and there is an attitude in the community that you “brought it on yourself”.

In fact, diabetes is not your fault, no matter when you get it, or what type of diabetes you get.

Of course we know there are some risk factors in type 2 diabetes that can be reduced, such as weight, lifestyle and activity levels. These are things you can try to work on if you are at risk of type 2 diabetes. There are other risk factors that are not in your control such as family history and your culture. However even lifestyle factors can be hard to tackle alone as many people who are overweight are living with problems that are difficult and not their fault.

AFTER DIAGNOSIS…GETTING ON THE ROLLER COASTER

After you get the diagnosis of diabetes you will eventually travel a road from what you knew and what was familiar to you in life before diabetes came along – towards where you will end up with diabetes being part of your life.

During this journey people can experience emotional ups and downs and often talk about it being a rollercoaster ride.

Eventually you will incorporate diabetes into your life and get back on track with your life. This can take weeks, months, or even years for some people.

Even after diabetes becomes a more comfortable part of life there can still be many ups and downs and unknown territory. It is a lifelong journey with no map! We are all different and how & when people come to the point where they make diabetes part of life varies. Some people call this “acceptance” or adjustment. Acceptance can be “up and down” at different times depending on what else is happening in life, such as how your general health is going, other problems in life and so on.

IT IS YOUR LIFE AND YOUR DIABETES – YOU ARE THE DRIVER!

It’s important for many people to feel they are the “driver” of their life and to feel in control. Diabetes is a disease that requires you to be the driver and to try and stay in control of it. Once diabetes becomes part of what you know, understand and feel comfortable with, you are more likely to have less stress and better able to continue managing diabetes when there are other stress/problems around and when diabetes is doing its own thing and being difficult!

WHY CAN IT BE SO TOUGH?

Diabetes is sometimes seen as different to other chronic diseases as it requires self management by you on a daily even hourly, basis. You make most of the daily decisions about diabetes management, with guidance from your health care team. There are many targets for health to prevent long term complications and it can be easy to be overwhelmed. Diabetes is tied up with many important physical targets/tests but there can be less focus on day to day living and maintaining wellbeing. Also Diabetes can become a low priority in your life, or it can become overwhelming, taking over everything.

Things can get out of balance and it can be easy to lose your way

DIABETES CAN BE AFFECTED BY:

stress
activity/exercise
illness
excitement
travel, work & routine changes
hormones
age/stage of life
food and drinks
medication and insulin type/dose/site of injection – OR
For no reason at all it can do it’s own thing!

You can end up tearing your hair out! And this can lead to lowered motivation.

THE BLAME GAME

Holding onto motivation can be tough when the results are not as you would like them to be and diabetes can be like that at times.

Feeling like people are blaming you for your diabetes being out of whack can lower your motivation and blaming yourself will also do this. Stand up for yoiurself and see other people’s lack of knowledge about diabetes as an opportunity to educate them!

It can help to remember it is not an easy job. Sometimes you can make changes yourself to your diabetes management and lifestyle to get healthier results; sometimes you can do this with good support and advice; and other times it is not within your “control” and is just the way diabetes is.

We are very lucky to be living in times where there are changes to diabetes management every day, so keeping up to date with the latest technology and management options is important. Always seek input from your healthcare team if things are not going as you would like them to be so that you can find out what changes may be possible – never suffer alone.

HAVE REALISTIC GOALS AND SPEAK UP!

It is helpful to have realistic goals and understanding of diabetes and how you can manage it. Your motivation for diabetes management will be higher if problems that get in its way are dealt with and if you remember you will have up and down days – this is forever.

Tell your health care team what your needs and priorities are and make sure you are listened to and feel comfortable approaching them with any concerns. Take a support person to appointments if you are unsure about speaking up for yourself or remembering what you are told in the appointment.

PROBLEMS ARE PROBLEMS

In our world we often end up seeing ourselves as the problems and a sense of personal failure can creep in. It can really help to learn to see that “problems are problems” and YOU are not the problem! If things are off track with your diabetes there are likely to be problems getting in the way – sometimes you need to talk to someone, a friend, family member, support person or counsellor, to work out what these problems are and how to make them smaller.

Seeing this does not diminish your responsibility in dealing with the problems and your diabetes management, but it opens up possibilities for change. If you see yourself as the problem ( I am hopeless, a loser, a bad diabetic) it is hard to make changes. Tackling something that is outside of yourself is much more helpful.

So lose the blame! It really helps to see what is possible.

Helen xx

Helen Edwards is the founder of Diabetes Counselling Online, has lived with type 1 diabetes since 1979, is Mum to 3 and also and Interiors Stylist and Blogger at Recycled Interiors.

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