Exercise or Torture??

I know that as a person with diabetes I should try and include exercise as part of how I manage my diabetes. I’ve read all the articles relating to how it works miracles and I’ve received all the lectures over the years from Health Care Professionals (***********).

But, I really don’t like exercise! I never have. And the normal types of exercise, such as walking, cycling, jogging, etc. just don’t do it for me. The not so normal forms of exercise for example Salsa Dancing or Pilates is just too flipping expensive and not often enough.

I used the excuse of being on the basal/bolus or the Multiple Daily Injection (MDI) insulin regime as an excuse to not even bother. I felt that I couldn’t plan that far ahead with my long acting insulin.

And I was not going to add insult to injury by exercising and then having to stuff my face to treat hypos. I mean what’s the point! I wasn’t going to risk adding to the number of kilos that I needed to trim off.

Now I do have to add that at the time my children were very small and trying to exercise, even the boring walk, was just extremely difficult. And this I feel is a legitimate excuse but I suppose an excuse none the less.

So what’s changed?

Well, I’m not a spring chicken anymore. Things don’t work as well as they once did. It’s time to make time for exercise.

I moved to Insulin Pump Therapy and so eliminated the first excuse I had. Then with trial and error I eliminated the second excuse (although I’m still not shaving any kilos off the hips). And of course the darlings are both in school 5 mornings a week pretty reliably which helps.

I’m still not “excited” about the walk around the block and I won’t go out in all-weather but I am feeling benefits. But I will persevere and hopefully end up just like my mother-in-law; a 61 year old kicking a ball with the grandchildren.

Happy World Diabetes Day

November 14th was chosen by the International Diabetes Federation because it also happens to mark the birthday of Frederick Banting who, along with Charles Best, first conceived the idea which led to the discovery of insulin in 1922.

Anyone with insulin dependent diabetes knows how important these two chaps are and I personally owe my life to them.

But it’s bitter sweet to wish people a “Happy World Diabetes Day” when maybe I should save my wish and wish that I didn’t have diabetes in the first place.

Why should I celebrate this day? Why am I celebrating having an illness??? I could roll over and say “to hell with it”. I could decide to not care anymore and give up – let diabetes do its worst and painfully make my life miserable until death.

But I choose to fight! I choose to want to live a good life for a long time and watch my children grow up and maybe even become a grandmother. I want to keep all of my digits and my sight; I don’t want to be on a waiting list for a donor kidney. I want to live life to the fullest.

So, I work hard at trying to stay on top of it. I take my insulin, I test my glucose levels multiple times a day and then some, I weigh my food to find out the carbohydrate content and then calculate how much insulin to inject, and I try to eat healthily.

So I’m not really celebrating having diabetes. I’m celebrating life and the quality of it.

Because I’m worth it!

I will take care of my health because I’m worth it!

I took the best care of my diabetes when I was pregnant with both of my children. And I continue to do it now because my children need me.

It got me thinking about why I didn’t put as much effort into my health before I had children?

Did I believe that I wasn’t worth it?

Is that what most of us believe most of the time? Is that why there are so many people with diabetes who don’t manage it well?

Today, I’m going to start to take care of my health for me. I’m going to tell myself every day from today that I AM worth it. I’m going to spend as much time looking after the inside as I do on the outside; this is pertinent because I just got a fab new haircut that I spent time & money on :-) 

I’m going to start telling my health care professionals that I’m worth looking after too. If they start thinking that I’m going to spend time on improving my health maybe they will invest more time in me?

What’s more I’m going to tell everyone I know who has diabetes that they are worth it too. Let’s take a health lesson from L’Oreal. ;-)

How much money can you raise for Diabetes?

Every week, I buy the local paper and try to keep up with events and news around me. Every week, I notice all the sponsored walks, cycles, swims, etc. organized to raise money for charity. I notice all the photos of people exchanging very large cheques too.

I know they are all deserving causes but why does my cause not feature as much in peoples’ minds? We rarely see people raising money for diabetes. I’ve been trying to figure out why.

At first, I thought it was because those other charities were about saving lives. But diabetes has the potential to ruin and end a life too; so it can’t be that.

But maybe people who do not have diabetes aren’t aware that diabetes can ruin a life? This could be possible.

Maybe, it’s because people without diabetes don’t know anyone with diabetes? This has to be impossible because it’s estimated that 200,000 people in Ireland have diabetes.

Or maybe people who don’t have diabetes don’t advocate for people with it because they feel it’s a self-inflicted disease? But nobody asks for diabetes, especially not small babies. Surely this isn’t the reason?

Or maybe, it’s because diabetes is one of the few diseases out there where the emphasis is on “self-care”, and maybe that extends to raising the much needed funds ourselves???

Whatever the reasons people do not think to raise money for diabetes might be; I can’t help feeling sad about them. I form pictures in my head of the faces of diabetes; the small babies, the children, the teenagers trying to fit in, the adults just getting on with their lives and those adults getting old, living in fear of developing a complication of diabetes.

That’s what it is! A lot of us blend in too well and we pretend that we don’t need any help and therefore we don’t ask people for money. So how do I fix this?

What do people think when you say “I have Diabetes”?

I was told recently that “diabetes was a death sentence” by someone who had lost a loved

 one due to complications from this mysterious disease. It stopped me in my tracks. I thought “I hope not”.

This got me thinking about what people who don’t know much about diabetes are really thinking when you tell them you have diabetes.

Over the years some of the comments I’ve received out loud have been that I’m too thin to have diabetes (by the way I’m not thin), I get the pity look, and “God love you”.

So, are people having flashing images of one-legged ailing & blind relatives? Are they thinking that I must be fat and lazy because of all the media attention focused on the link between diabetes and obesity? Are they thinking that I deserve to have diabetes because I’m fat and lazy?

All of these people can be forgiven for what they think – they are lucky enough not to have someone close to them who has it. Unfortunately, according to the figures from the World Health Organisation this will probably change.

Thankfully, I don’t dwell on what other people are thinking and I choose between explaining what having diabetes really means or just practise nodding my head.

Call to Action for People with Diabetes.

Since I returned to live in Ireland I have been increasingly frustrated with the health services available to me, a person with diabetes. This stems from my fear of what the future holds for me health wise. What if one day I developed an ulcer on my leg that just won’t heal? What would happen to me & my family then? The answer is that my husband would help me pack our bags and move us all back to the United States; I would be heartbroken but I would have the very best medical care.

For a while I sat around and moaned about how somebody should do something to change things. Then I progressed to, I wish I could do something… but what? Then, I started finding ways that I could do something (with the help, advice and support from my husband) and did it.

I’m happy to announce that on Saturday, the 11th of September that I became even more empowerment to truly make a difference. I became a Local Diabetes Advocate for Diabetes Action. What I can do was broken down for me into small tasks and it was then explained that if I encouraged others to do them same, how those small tasks would have a huge impact. It is crystal clear to me now.

“Diabetes Action is a new diabetes advocacy group, with a two-year campaign that aims to influence health policy by mobilising grassroots support from Ireland’s growing diabetes community.”

Their first campaign is focusing on improving podiatry services for people with diabetes, who are “needlessly developing complications often leading to amputations.” Between 2005 and 2009, there was 3237 lower limb amputations, 1579 of those were due to diabetes (that’s 49%). 1579 people lost a limb when it should have been prevented. There are lots more facts and figures to blow your mind on the website.

I’m asking people with diabetes to do as I have just done; log onto , fill in your name, postal address & email. The website will create an email for you to send to your TD/Senator asking them to lobby the HSE and the Department of Health & Children to set up a local service as part of a National Foot Screening Programme. The email will contain real facts about services in your county.

Now my mission is to spread the word to as many people with diabetes and their families and encourage them to send this email through Diabetes Action.

We’ve sat around too long wishing we could do something but not knowing what we could do.

Horror Stories vs. Happy Endings

Media attention is a good way to create more awareness about diabetes in the general public. So when I learned that RTE 1 was airing a programme dedicated to the disease I thought “great!”

I quickly changed my mind when I read the programme synopsis in advance of viewing it. We were going to hear the stories of 3 people, one of whom had passed away since filming from diabetes complications, the second was visually impaired and had limb amputations and the third was only a couple of years diagnosed.

I thought to myself “it’s going to be grim and depressing” and decided I was going to be disappointed with the programme. I really didn’t want to watch other peoples’ misery and think that it could one day be me.

Now that I have watched it and heard all of the stories, I heard the message. To me it was loud and clear, “take care of your diabetes or else you will end up like those in the programme”.

I asked myself would I have heard that message from someone who seems to have good management of their diabetes, who didn’t have any of the long term complications, or was young, fit and vibrant?

I think the answer is no.

So, yes we would like to see more inspirational people with diabetes who have good stories to tell us but we also need reminders of what can happen if we choose to ignore our diabetes.

Moments of Inspiration

Meeting Steve Beriault.

I had the pleasure of meeting a man by the name of Steve Beriault on Sunday the 11th of July in the Limerick Strand Hotel, where he came to share his personal experiences in living with Type 1 Diabetes.

Steve is a 59 year old Canadian, he was diagnosed with Type 1 Diabetes when he was 2 years old; he has lived with it for 57 years.

He was diagnosed in the “boiling the glass syringe to sterilise it” era. He was in his early 30’s when he received his first Blood Glucose Meter. Before this he had no way of knowing what his blood glucose numbers were at any time and there were no HbA1c’s tests either.

His achievements include; cycling across Canada in 1975, kayaking halfway across Canada, completing five 5K walkathons and raising $100,000 for the Juvenile Diabetes Research Foundation (JDRF) as a double amputee.

Diabetes threw everything it had at him; diabetic retinopathy, kidney disease resulting in a kidney transplant, and neuropathy leading to both legs being amputated below the knee but he still comes out fighting. Of all of these tortures he says that “you want to make the best of what you’ve got in life and live it”.

He maintains that if you have diabetes you need to become a warrior and that diabetes is your enemy. He goes on to say that the worldwide diabetes population comprises almost 240 million persons. About 24 million (10%) are Type 1 diabetics. Imagine if one could mobilise those 24 million as an army in this war with diabetes. This army has huge potential to raise the funds needed to research a cure and to create awareness & education programmes.

I’ve never thought of diabetes as my enemy; I’d rather think of it as a more of a friend, so to speak, because having enemies can be exhausting and eventually you get tired of fighting. However, I like the analogy and after listening to Steve I am ready to take up arms and fight. Maybe if the researchers heard from us, the people they are trying to cure, more often they might become more inspired too.

http://www.talesintheinsulinvial.com/

Sometimes you just feel tired…

Diabetes is a peculiar disease sometimes, in that, when everything is going well with your blood sugars you actually feel GREAT! You might actually stop and wonder how you could have a disease when you feel so healthy!

However, when the old blood sugars are not doing what they are supposed to and that sluggish tired feeling creeps in, it can be hard to get back on track. And it’s such a vicious cycle; you need some cheering up when the numbers let you down so you indulge in some comfort food, which exacerbates the problem. Then, you feel guilty for having the chocolate (or whatever the poison might be) and get even more down. At this point, it’s harder to feel good. Depression can sneak in and it takes quite a while to get back on the tracks again.
Every day that I feel like I could take on Mount Clean-the-Windows I have a little celebration and tell myself “well done” and “see, you can do this”. And I tell myself that all the carb counting, the sums in figuring out how much insulin to take for this meal and the watching every single bite that I put into my mouth is worth it. It’s encouragement to keep it up.
But then, there are days when you have that sluggish-tired feeling and you try to determine what your body is telling you. You feel like sitting in front of the telly and watching hours of Nickjr or Playhouse Disney with the kids instead of testing your blood sugars.
It pays off though when you do make the effort and test because when you get a good number you realise that it’s the fact that your body is just plain old TIRED and it’s nothing that a good night’s sleep will cure…. Sometimes, getting a good eight hours of sleep is more difficult than diabetes:-)

Getting the New Technology & Treatments for Diabetes.

So you’ve heard about the benefits of the insulin pump and continuous glucose monitors and sensors. And you’re thinking “I might just get my diabetes under control if I have one of those”


How do you get one? Well the answer is that it’s not as easy as just deciding to get one.

In Ireland, people with diabetes get all of their medicines and medical supplies, relating to diabetes for free on the Long Term Illness Scheme, which is fantastic! However, when a new treatment comes on the market such as the insulin pump which costs €5,000 and then about €100 plus per month for the supplies, not to mention what it costs to have specially trained medical staff on call 24/7 to support the pump user, the people who foot the bill start to ask questions. Understandable!

So, the most common replies to questions about the pump are that there are problems with funding the staff needed to provide pump support. (I might add here that the suppliers of the pump actually provide the patient training.) Then, you will be told that the HSE won’t approve the funding for the pump.

It is a very savvy customer/patient who will pursue this quest after that.

So what happens if you want something like a glucose sensor? And your medical team just won’t discuss it with you. The supplier, obviously, wants to give it to you; you’ve done your research and decided that you want it. Surely, there is a way that you can overcome these problems.

Maybe it’s time for the Health Insurance companies to join this debate. Maybe in order for them to prevent us from claiming huge medical bills for kidney disease, limb amputation, hearts bypass surgeries, etc., they should be working with Roche, Abbott, Animas, Medtronic, etc. and helping people with diabetes manage our disease better?

How do you feel about Diabetes?

I know I have a positive attitude when it comes to my diabetes. But, just for a moment, I’m going to explore the negative feelings that might surround it. Why am I putting myself through this? Well, I met with my friends with diabetes recently, and we talked about all of this stuff – you know “feelings”. So I am actually dwelling on it a little and feel that in order to expel it I have to write it.

The first negative thought in my diabetes journey was just after diagnoses. I wondered if I had given myself diabetes, did I do something that brought it on or was it karma for something horrible I did in my past life that I didn’t know about yet?
Other feelings that creep in are;
The Burden. Ultimately, this disease is about “self-care”, which means the responsibility of keeping well & healthy is my burden. Yeah, I could share it with the people who are most important to me but why would I burden them? I feel I should be able to carry it all by myself.
The Guilt. Deciding to have children and what if they have diabetes too. I would blame myself and find it difficult to live with.
The Doldrums. The feeling I have when, no matter what I try, the blood glucose numbers are too high and I can’t get them down. I start to feel awful, physically, and then, start to feel awful emotionally, and the will to keep trying disappears, making it harder to break the cycle.
The Fear of the future. This one was a surprise to me because I think that when it does surface I quickly push it back. This feeling is all about what I have to look forward to; a life without sight or without limbs? What will happen to me when I get old and can’t take care of myself and have to depend on others? Do I put myself in a nursing home where the staff is not properly trained in diabetes care, or do I ask one of my children to become my full time carer?
So now it’s out there and I’m going to shake it off. I’m going to focus on taking it one day at a time; one blood glucose reading at a time. I’m going to find the stories of inspiration like that of Gladys Lester Dull aged 90 years and living with Type 1 diabetes for 83 years (from 50 Secrets of the Longest Living People with Diabetes by Sheri Colberg & Steven Edelman). I’m going to focus on the fact that there is always more to learn about diabetes, new medical advances every year to bring me closer to a cure and most of all, there are more people to meet with diabetes that radiate positivity.
It can be done!

I get so mad at my Doctor....

I recently had a conversation with my consultant's secretary that left me so annoyed, I had to wait until I calmed down to write about it. I'm sharing this experience because the medical professionals can very often have a negative impact on a person with diabetes and we need to rise above this temptation to "lash out" at them by hurting ourselves.

So on Thursday, 27 May 2010, I received a phone call from the secretary at my endocrinologist’s office. And it went something very close to this;

Secretary; “Grainne, I’m calling with your fasting bloods results.”
Me: “my what? The bloods weren’t fasting- do you mean my HbA1c?”
Secretary: Your Hb mm… yes. The result is 7.0 and the Dr. says you have to do better.
Me: What!

The conversation continued for a couple more minutes and I was polite and civil because I knew the secretary was just doing what she was asked to do - blindly.
Firstly, how do you react to being told that “you have to do better”, when you think you’re doing everything you possibly can to begin with. Being told this makes me feel like having diabetes is all my fault, and that I’m clearly not managing it very well so again that must be all my fault too. It also made me want to head straight for that chocolate tin or the pint of ice cream.

Secondly, why I ask the secretary how I should do better, what do you think her reply will be. Yes, instructions about my diabetes management should come directly from my endocrinologist and not from someone who isn't qualified to answer follow up questions. Afterall, that's what I'm paying for (yes this is the private health system I'm talking about).

And thirdly, how am I supposed to do better with a one sentence instruction? This doctor gives no specific instruction other than to have lots of bananas. Dr. X doesn’t talk about carb counting, sliding scales, insulin to carb ratios, testing or anything useful. I need a conversation on how I can do better that offers me options and realistic goals.
I think it’s time that I said to my endocrinologist that she should do better – I am paying her €100 per visit and maybe it’s time she earned it. Maybe, it’s time that she trained her staff appropriately too. And while I’m at it, maybe it’s time she acquired some better time management skills instead of taking patient phone calls during consultations.
I should give my hubby a break and direct my rantings and ravings at the person responsible for them.

Diabetes and the Media

I watched Craig Doyle’s Saturday Night show on the 21st May, 2010. The only reason I watched the show was because Kim Marsh of Coronation Street fame was a guest and would be talking about diabetes.


How disappointed was I? I watch and enjoyed Denise Welch (the first guest) talk about her life, her biography and her depression. Kim is up next and Craig starts with her Corrie Career, which was to be expected. She gets to mention about 2 sentences on her grandmother’s diabetes and the launch of the website www.itsmyinsulin.ie. I was thrilled that she was talking about diabetes and that it was type 1 diabetes but then she was cut off!

I sat in disbelief!! The media never talks about type 1 diabetes, all they ever focus on is the relationship diabetes has with obesity and not distinguishing type 1 from type 2. I believe that this treatment by media professionals, who haven’t taken the time to research the subject, creates a stigma around diabetes. People don’t talk openly about it and when you do, you can see in their mind that they assume you had to be old, fat and lazy to get it, so you deserve it.

It’s just not fair! Where are our Nick Jonas’s, or Halle Berry’s or Miss America’s 1999 to speak on our behalf? We want people to inspire us to do better, not to downgrade us into hiding our diabetes. Or as in the case of the Craig Doyle show to not even give people a chance to explain what having diabetes means.

Why Diabetes? Why me?

When I was diagnosed with diabetes, it was 1993 and I was a 20 years old student; living the typical student life.

That all changed with diabetes. For a very long time I only knew what I absolutely needed to know about diabetes to survive. I fought it but not in a good way. My attitude was that diabetes was not going to get in my way! My friends and family would ask about it and how I was getting on, I replied “fine”. I had no idea of how I was doing, health wise, my medical team didn’t talk my language, I didn’t asked questions, and I didn’t want to be there.

What changed? I met my now husband who had decided I was worth having around for a long time, and convinced me I was worth it.

I started internet searching for information on diabetes to give to him and I started learning about diabetes for myself. Things like how exercise affects my blood sugars, about how insulin works once I inject and how food affects that process and lots, lots more. I even met another person who had type 1 diabetes who I couldn't push away because she was the wife of my husband’s friend.

Through this friendship, I realised how important it was for me to have people my own age around me who knew what having diabetes felt like.

I’ve come a long way since then. I started a support group for people with type 1 diabetes in my home town in 2007 and my diabetes family has grown quite a bit. People call me with their stories and I listen, hoping that in some way I'm helping them. I wished that I had had someone I could’ve talk to in the beginning but knowledge about diabetes was poor back then.

Now, I want to inspire people to go out in search of the knowledge they need to live a great life with diabetes. I want to encourage people to start reading the numerous books on the subject and to find other people with diabetes on the internet or in their area. More and more supports groups are forming around the country and if you don’t have one in your town yet then find us on the internet. We’re here!

Some of My Story

When I was diagnosed with diabetes, it was 1993 and I was 20 years old; a student living the typical student life.


That all changed with diabetes. For a very long time I only knew what I absolutely needed to know about diabetes to survive. I fought it but not in a good way. My attitude was that diabetes was not going to get in my way! My friends and family would ask about it and how I was getting on, I replied “fine”. I had no idea of how I was doing, health wise, my medical team didn’t talk my language, I didn’t asked questions, and I didn’t want to be there.

What changed? I met my now husband who had decided I was worth having around for a long time, and convinced me I was worth it.

I started internet searching for information on diabetes to give to him and I started learning about diabetes myself. After 8 years of diabetes, I met another person who had type 1 diabetes who I had to be friends with because she was the wife of my husband’s friend. This was another good thing for me and the start of seeking out even more people who have diabetes.

I realised how important it was for me to have people my own age around me who knew what having diabetes felt like.

I’ve come a long way since then. I started a support group for people with type 1 diabetes in my home town in 2007 and my diabetes family has grown quite a bit. People call me with their stories and I listen. I wished that I had someone I could’ve talk to in the beginning but knowledge about diabetes was poor back then.

Now I want to inspire people to go out in search of the knowledge they need to live a great life with diabetes. I want to encourage people to start reading the numerous books on the subject and to find other people with diabetes on the internet or in their area. More and more supports groups are forming around the country and if you don’t have one in your town yet then find us on the internet. We’re here!