Helen-Edwards, Author at Diabetes Counselling Online

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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Meeting Kevin McCloud & why diabetes is like Dory from Finding Nemo sometimes

October 23, 2014 by Helen-Edwards 2 Comments

In case you didn’t know, not only am I the founder of Diabetes Counselling Online, but I have a whole life outside of diabetes, as a Stylist and Interiors Blogger, encouraging people to choose sustainable options in decorating their homes. This work over at www.recycledinteriors.org gives me great joy.

If you didn’t see my photos on social media, I have just spent the weekend at Grand Designs Australia Live in Melbourne! Yes I was pretty excited! The highlight was of course meeting the great man himself, Kevin McCloud, and hearing his inspirational talks. I was also very excited to finally meet Shaynna Blaze, who I have been chatting with online for ages. Both are just as lovely as they seem on television.

I shared a version of this post on Recycled Interiors this week for my readers. Today I am sharing the “real version”, the #itmakessenseifyouhavediabetes version, the one that takes the entire experience into account. The one that you can’t share with people who don’t get diabetes.

Some of Kevin’s key messages I will take with me everywhere that you might find inspiring were:

“Architecture can really make you happier”

“It’s how we use stuff that makes it sustainable, not just how it is made”

“Good architecture connects people to a place in time”

“Social Sharing and the spaces in between buildings is what sustainability is really about”

“We are in the most exciting time since the industrial revolution with people looking to waste as a source of materials”

Kevin is absolutely inspirational and I could have listened to him speak all day. His approach to architecture being about people, not just buildings, is what comes through, and that sustainability is really about how we set up community, sharing and interaction with our surroundings. I saw him speak in conjunction with the Melbourne Mayor, about aiming for zero emissions cities. Melbourne has a number of great building projects which are leading the way. Kevin also presented the plans for re-building Christchurch, which revolve around these sustainable concepts of living in cities in healthy ways.

I then went to his session on “What makes a Grand Designer” where he made it clear that it is not the size of a project that makes it grand, but vision and risk, making space out of nothing and “people moving to the margins” to design and build homes which are completely unique. He says the most interesting homes to him are not those massive ones where people have a heap of money to sit and look at all the empty space, but those which connect people to a space in time, which have their biography written into their homes, you can see the journey they have had by the things they decorate their homes with. Totally agree Kevin!

And here is the diabetes version.

Thursday lunchtime

I am headed away today, it is only a short trip, but any time on a plane leads to impacts on my blood glucose levels. The stress of airports, carrying luggage, being crammed into a plane full of strangers, getting taxis and finding hotels, all inevitably lead to highs and lows. I prepare my levels to be not too low, not too high, so I don’t end up with a hypo mid flight – one of my nightmare scenarios.

On the way I stop as Diabetes SA as I realised the day before that I had only 1 box of strips and no glucose tablets. I had phoned the day before and paid for them, so I swing in, grab the supplies and head to the airport. I arrive and check in to the lounge at the airport, check my levels a few times to make sure I am happy with them and grab a piece of toast.

Thursday 3 pm

I board the plane and my levels are sitting around 11 mmol. I am happy with that and I settle back for a quick nap before arriving in Melbourne. I check my levels mid flight to be sure they are still ok. As we arrive I switch the time on my pump to Melbourne time.

Thursday 5pm

The flight is great and I grab my luggage and a cab. One of my travel tips is to order a food shop online before you go away. I hit the hotel and my food is not only already there, but in my room and my fridge, unpacked by the lovely hotel staff.

Thursday 5.30 pm

My blood glucose is now 14 mmol so I have a bolus to bring it down so I can eat some dinner. In the meantime I call my family.

Thursday 6.15 pm

I get off the phone and realise I am hypo. And I have 3 units of insulin onboard….I panic, eat a shit tonne of glucose and lollies and hope for the best. I eat my microwaved potato and salad. I end up at 18 mmol.

Thursday 10.30 pm

I am exhausted but don’t want to go to sleep until I am sure my levels have settled.

Thursday 11.30 pm

My levels are now 10 mmol and I am good to go to sleep. Overnight I check them again and they are now at 8mmol.

Friday 6 am

I am up and ready to go. My levels are now 6 mmol. I decide against a run as I have an hours walk each way to the venue. I make sure I have less insulin than usual with breakfast to be sure and get there without a hypo.

Friday 9 am

I head off, my levels were only 8 mmol so I grab a banana. I make sure to have spare blood testing strips, pump supplies and food with me, as well as plenty of glucose and lollies. My bag is like a truck!

Friday 9.45 am

I check on the way and my levels are 9 mmol. I am happy with that.

Friday 10 am

Some young 20’ish guy tries to pick me up on South Bank! (not diabetes related, but just really?!)

Friday 10.10 am

I arrive and am bursting with excitement! My levels hover between 6 and 9 mmol all day. I have brought my food for the day with me. I keep a regular eye on my levels in between all of the excitement.

Friday 4 pm

It is time for me to head back. I have stoked my levels up to 10 mmol for the walk. I head off and make the fatal error of presuming Melbourne is like Adelaide and take a different street up the hill…….after about half an hour I realise I am looking lost. My GPS is not making any sense to me. I panic. I check and I am hypo. I start shoving in glucose. I can’t decide what to do. I wander around a little. I call a cab. And text my poor Mum who is probably now stressed too. It just feels better when you are alone to know someone knows you are in trouble.

“I have type 1 diabetes and I have low blood glucose and am lost” I say. “First cab available on the way” she says. I don’t really relax, worrying they will miss me and trying to hail passing cabs to no avail. My feet hurt and my shoulders are sore under the weight of my baggage.

I hear a beep and my knight in shining yellow arrives. He is an older bloke and lovely. “You look too young to have diabetes” he smiles. Sigh……In my hypo, anxious, tired state, I start an education session with him.

I realise I was going in the completely wrong direction as he makes a right turn. He drops me at the wrong place and I still have a 5 minute walk. I make it.

I am now 6 mmol. I get dinner and eat it in bed. The luxury of travel and hotels. I watch the Lifestyle Channel and my mate Kevin. I dream.

Saturday 6 am

I awake to hot air balloons and a blood glucose of 6 mmol. Given yesterday’s experiences I eat breakfast and again keep my bolus down. My pump needs a refill. I change the cannula and refill the insulin.

Saturday 8.30 am

My BGL is again only 8 mmol so I grab another banana. I head off wearing sandals. Fatal error.

On the way I check and my BGL is dropping. I eat snakes.

Nobody tries to pick me up.

Saturday 10 am

I am a VIP today. I get a goodie bag. I now need a trailer.

The day is amazing. I sit around 8 mmol all day. I eat the food I have with me and my feet get sore slipping around in my sandals. I worry about the walk back. But I do it anyway.

Saturday 3.30 pm

I stop at the amazing Crown Gelati bar on South bank to get my levels up. It is divine. I decide to go shopping on the way back for my son’s “trip gift” (he always gets something when I travel- it’s called bribery) and an outfit for my oldest son’s 21st party.

Big mistake.

I get lost in all of the shops – I have never seen so many shops!!! I try on countless outfits. I get a skirt, and a toy. I feel myself starting to fade. I am low. I stuff in glucose and lollies.

I continue to walk home, despite multiple bags digging into my arms, extremely sore feet and levels on the way up. I keep considering a cab, but it is like I have been wound up on a string and can not stop moving forward. My levels hover, they stay away from a hypo. My feet feel like I am walking on razor blades.

I just keep swimming.

Saturday 6.30 pm

I have never been so happy to see a front door. I stagger in and go to my room. I fling off my shoes. My BGL is now 5.5 mmol. I made it.

My night is pretty good, diabetes plays ok, a few tweaks needed here and there. I have a restless sleep as I always do on my last night somewhere, keen to get home.

Sunday 5.30 am

I am awake. My BGL is 8mmol. I have breakfast and usual insulin. I try to pack all the books, Shaynna’s candles etc into my small bags. I can’t do it. I realise I am hypo. Straight after breakfast….the hypo panic sets in. I eat.

My diabetes gastropresis has been playing up over the three days as it does when I travel. Today my system decides I will sit on the loo all morning, while hypo…..I consider hiring a car and driving home to avoid the stress of the plane. I feel nauseous.

I lie down and do my deep relaxation with my CD track. I feel better. I pull it together.

I just keep swimming.

Sunday 10 am

I arrive at the airport. It all flows well and I sink into the huge Virgin lounge. My levels are around 13 mmol. I don’t want to go too high. I juggle food and insulin over the next 2 hours.

I head through security “you need to take the pager off” says the security guard. “NO it is an insulin pump” I snap – “oh she says not touching that then!” I consider that maybe there has been a little bit of education in airports about pumps, but then again…

Sunday 11.30 am

I board the plane around 10 mmol. I sleep. My pump gets stuck around the seatbelt. The guy next to me looks sideways at it as I disentangle it. It is too cold. It is too hot. It is too bumpy.

We arrive. I kiss the ground, as I always do. My BGL is now 6mmol. I eat my apple so I don’t have to throw it in the quarantine bins.

I am home. I snuggle into boys and cats and worry less about the fact my levels are now up a bit, I am home.

That was a hell of a lot of paddling to get through an extremely fabulous weekend! And nobody else I interacted with there would GET that. But I know all of you out there do get that.

In terms of the event, there were some fabulous exhibitors, but I spent most of my time in sessions, learning and listening to the experts that were assembled. Well worth it as far as I am concerned. With sustainability Ambassador Kevin in attendance, there were plenty of opportunities to explore sustainable design and living. In fact for me, not surprisingly, this was the main focus of the weekend. Most of the talks were free, which makes it really accessible to everyone.

If you are thinking about heading to Sydney for Grand Designs this weekend, I highly recommend it, but I also recommend getting a ticket to see Kevin speak, it is totally worth it. There are also special meet and greet sessions with Shaynna and I happened to overhear one of these in the VIP lounge, where an intimate group got to ask her questions about their own homes. Do what you love people.

Diabetes always plays a part in your life. Travel can make it do all sorts of strange things and most people will have no idea what you are managing.

People with diabetes are amazing. We are the ultimate multi taskers. Just keep swimming lovelies and you never know where you might end up.

Have you got a travel story to share? If you would like the full wrap up of the actual event, you can read it here

Would love to hear

Helen

Melbourne also put on a magical show with brilliant weather and spectacular sights to wake up to – this was out of my window at The Art Series Hotel, The Larwill Studio – which I highly recommend. The best and quietest night sleep I have had in a Melbourne city hotel.

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Common denominator, the secret diabetes club

October 8, 2014 by Helen-Edwards Leave a Comment

I’ve been at my job now for 6 months, I’ve hit the half way mark.

As I am undergoing a traineeship we have to attend training days. The other day I attended my third training day, I had met most of them there already, the fellow trainees, who were experiencing everything I was, and somehow in conversation it came up that this girl has Type 1 Diabetes. I immediately chirped ‘so do I’! (as if we were both of a unique and mystified breed.)

Everyone at our table expressed a puzzled look, as if ‘how did we not know this’. I feel whenever I announce that I have type 1 diabetes, whoever I am talking to seem slightly offended and intrigued as if I should be introducing myself with it before my name.

Not that they say anything to that degree.

Immediately my fellow trainee and I had a bond, something only we share with everyone else who has type 1 diabetes. We went on to ask the standard questions, how long, pump or no pump, the moans and groans of the stereotypes and all the annoying factors that come with diabetes.

We shared a lot in common, one concern she had was living by herself, she said she would like to move out but having diabetes and not having anyone there in case of an emergency worried her. I have the same thoughts, though I am in no rush to move out, the thought of living by myself after hearing some pretty scary diabetes related stories (let alone all the rest) does terrify me.

It’s nice to know that I’m not going through this alone, and as I finish writing this post I am going to send her an email to see how she is going at her job and everything else.

Until next time,

Georgia from the ‘Secret Diabetes Club’

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