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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

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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Those cloudy days with diabetes

November 28, 2014 by georgia Leave a Comment

Yesterday it rained.

It’s the time of the year where we should be stripping off, not layering on, but every rule has it’s exception. It’s the middle of November and it’s raining.

It reminds me of having diabetes, you get a streak of good BGL (Blood Glucose Level) readings then BAM out of nowhere and for no good reason a storm hits, sometimes it’s just a light drizzle in the morning or a few clouds in the afternoon yet others, as they say ‘when it rains, it pours’ and those sunny days seem long gone.

At least with the weather, it’s forecasted. There’s no such luck with having Diabetes, you can do everything right, administer the right amount of insulin that you worked out by doing the BGL:Carbohydrate ratio and still have a gust of wind blow you off track.

As much as Diabetes is about science, without being hooked up to a machine 24/7 there is no formula that can work every time – it’s forever changes and like science there are unaccounted factors that come in to play, except instead of being in a lab hovering over a microscope you’re at school, or your day job and have to juggle everything all at once.

Sometimes it feels like I’m working two jobs.

However you do get the opposite happen, and lately my days have been a bit cloudy – it’s the typical no matter how hard you try, everything and anything that can go wrong – will go wrong, good old Murphy and his laws!

At the moment, the sun is shining for me (not at the moment – I’m watching the rain drizzle down my window) but I’m having one of those lucky days, where my diabetes is cooperating with me.

Not many people understand the ongoing frustration of juggling everything to get your levels right – only those who share the pain (literally) of injection after injection and test after test. So when those sunny days come – embrace them. And when those rainy days come – dance in the rain because you are doing as much as you can do – before you know it a sunny day is just around the corner (well it’s stuck behind a cloud).

No matter what the weather, stand tall and we can get through this together!

Until next time
Georgia

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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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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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A letter from your diabetic daughter

August 19, 2014 by Helen-Edwards 4 Comments

There has been a lot of discussion in our parents group on Facebook in the last few days about how to make children with type 1 diabetes eat when they refuse to, and generally do what they need to manage their diabetes. Some of the comments have been heartwarming and show great understanding of the nature of children and young people, as well as the nature of diabetes. Other comments speak more of the very genuine and valid distress of a parent with an aching heart for their child, with perhaps less thought about what it might be like for the child.

What we need to remember is that children and young people are dealing with all of the normal transitions of life, or growing up. They fall in love, get their hearts broken, want to fit in. They worry about how they look, what they will do in life, how they will cope. They are charged with the task of rebellion, of testing the boundaries of life, as all young people are, it is how we grow as a society. Young people are risk takers, they dance on the edge of danger and find out how hard it is to fall. They create new ideas, new worlds. They have to get through school, university, get a job, leave home. All the time layered with their diabetes.

It is their diabetes. They don’t get a break, not even for a moment.

Kids with diabetes don’t try to manipulate you. They are not naughty. They are simply dealing with a very grown up challenge, well before they should have to. And they are still your beautiful child. Teens will challenge you, whether they have diabetes or not. And it is our job as parents to work through this with them. Not to blame, but to love. To teach, to support, to encourage and to care.

It got me thinking about how families are affected by diabetes and how sometimes, parents and kids need to stand in each others shoes for a moment to see what it is like for the other side.

So, to kick off, here is a letter I just wrote as my 16 year old self, to my parents. I will write one from the parents perspective soon.

Dear Mum and Dad

I know you think I hate you but I don’t. I do hate diabetes, my life and myself. Sometimes I want to die. I don’t want to be different from everyone else. How is anyone supposed to want me, to love me, when I have this disease? I feel broken. Dirty. Alone.

I can never escape diabetes. You can. I know you worry about me all the time, but it is MY diabetes and worrying about it and living it are totally different. I am going to be the sucker left with it once I am gone from you. You get to take a break. I can’t. I figure it is my body and I should be able to do whatever the hell I like. Even if I end up sick. And you won’t be there forever for me. I have to work it out myself. I am it….

Sometimes I want to run away, not really from you, but from myself. I find myself behaving in a terrible way, but I just can’t stop. I want people to see past the diabetes, the brokenness of me, and just see a pretty girl. Someone worth loving. I feel so fat, so ugly, so unwanted. How can any boy want ME?

There are times where I want to crawl into your bed, like I did when I was a little girl and snuggle up between you, but I can’t. I want everything to go back to normal, like it was before diabetes. So I try to make it that way. I don’t know if you know, but I don’t take all of my injections and I don’t test my blood that often. It makes me hate myself even more….but at least I feel more normal, more like my friends. I see my perfect little sister. I love her so but she never does anything wrong…she is not broken. How could you love me as much as her when I do so many terrible things?

I am so scared about my future. Will I end up with no legs? Blind and with no kidneys? This is what they told me….and to not have babies, this is tearing me up inside…..I am so sad, all the time. That is why I drink and do so many dumb things. It is not to hurt you. It is what everyone else is doing and I just want to fit in. Sometimes when I am partying, I feel invincible and diabetes can’t touch me. And then I get sick and it all comes crashing down around me. I know I am probably damaging my body but it seems this is my future anyway, so why bother caring……

I find myself failing where once I was the leader. I worry that I will have to leave home soon and I will not be able to manage without you, but I can not tell you that. I want so much to get away from you and so much to stay by your side.

I know I was your perfect little girl. Always doing everything right, but I can’t be that anymore. Because I am broken. And so is my heart. I hope you can forgive me one day

your diabetic daughter

I would love to hear both parent and young people’s comments and thoughts and please feel free to submit your own story from either perspective

Helen

Helen Edwards is the founder of Diabetes Counselling Online and has lived with type 1 diabetes since 1979. She is also Mum to three boys, runs a Styling Practice and blogs daily at www.recycledinteriors.org

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