My Mental Health Mattered to My Diabetes

I was 20 years living with type 1 diabetes before I hit THE wall. The wall where I was done with it! Every blood glucose test was a nightmare, and no amount of insulin brought my blood glucose levels down to a respectable number. I’d had enough of diabetes and it needed to go away RIGHT NOW! You may not know what I’m talking about, if you are one of those people who just gets on with diabetes management, without feeling an overwhelming mental burden, you are lucky. But I’m asking you to continue reading, just in case you ever do hit a wall such as this. Maybe not a big or hard wall. It could actually be more of a “I just don't feel like getting out of bed today but I have to, so I will” wall. But if that day turns into a week and then maybe a month. It may affect your diabetes, even if it’s not related to your diabetes.

If this happens to you, you have to figure out a way to get around it, over it or through it and that needing help is not a failure in your capacity to manage your diabetes.

Four years ago, the only thing that kept me holding on and got me out of bed each morning were my children, my amazing husband and being an active member of the Irish Diabetes online community.

They didn’t even know that they were holding onto my hand so tightly so that I didn’t fall off the cliff and plummet to my death. But they were! Well maybe my husband did but no one else knew.

My story is long and I've written it countless times before but now seems like the right time to publish.

Four years ago, at 19 weeks pregnant with our much longed for third baby, I was told, very compassionately, by the doctor, who performed a foetal anomaly scan, that my baby’s brain had not fully formed and that the condition was “not compatible with life” and that my baby’s heart was not beating any more, and it broke me. I didn't know it then, but it was going to be a long time before I would be fixed again.

I could give you all a day by day account of what happened between that day, the 19th May and the early morning hours of the 25th May when our baby boy came into to world sleeping. But I won’t. I will just tell you about the nurses who took care of me, who cried with me and helped me get through those first few days. My husband who held my hand and helped me breath through the labour pains. And my endocrinologist who told me that under no circumstances was I to blame myself or my diabetes, that I was to forget about my diabetes for three months and then she would help me get back from where I was lost.

My Wall was grief. I made it through the physical healing stage, where simple, everyday tasks, such as driving the children to school or just being alive and breathing, were extremely difficult to accomplish. I don't know how many times I nearly drove into the car in front of me. This lasted about two months, then functioning became easier but a fog of sadness descended and it would not lift.

Not only was I struggling with my grief but I was struggling with losing the dream of adding to our family. I was now 40, pregnancy was not going to be easier, I was older, with type 1 diabetes. How high risk was too high of a risk? This was the first time ever that diabetes was influencing my decisions. My brain was a spaghetti junction of thoughts going backwards and forwards of “to hell with it” and “no, it not worth the risk”.

In the following months, it became easy to smile on the outside but inside my heart was broken and I was just sad. Extremely sad. All of the time. I had panic attacks, but I didn't know what they were at the time. I couldn't sleep. However, I did all of the things that were habit in looking after my diabetes - I never once stopped taking care of it. But my diabetes was not behaving and was having a full blown tantrum, like it was the child I lost. In hindsight, I feel that it was telling me that it wouldn’t behave until I took care of what needed to be taken care of; my head and my heart.

I knew that I needed to talk to a professional. I knew that my diabetes was very much out of control and that I couldn’t risk allowing it to continue that way. But it was 16 months after we lost MJ, that I found someone to call, recommended by a very good friend.

I remember calling her and making the appointment vividly. Because she said that I had overcome the biggest challenge; making the call. That the next steps wouldn't be so difficult. She was right. I felt that I had taken my first step back to finding my “happy” again. I felt like a little patch of fog had cleared to let one ray of light in. And, I kid you not, after months and months of crazy blood glucose bouncing around, they fell into a decent pattern again from that day.

Living with type 1 diabetes requires a lot of mental energy and if your brain is dealing with a trauma, stress, anxiety, grief and sadness, doesn’t it stand to reason that you’ve got nothing left for diabetes? And...your diabetes doesn't like to feel neglected and ignored.

If your head in not in a good place, you may not be able to put your diabetes in a good place. Diabetes is challenging enough at the best of times. Your mental health matters! And it matters to your diabetes!

So, there may be a day, a week, a month and maybe more where you may feel this. And these are the things it might help to know;

1. Mental health isn’t always about being diagnosed with a condition, disorder or illness. It is about your emotional well being. Every single one of us will experience tough times in our lives and sometimes we will not know how to make it through those tough times.
2. If the feelings of “the blues” continue for weeks then it's a thing that must be dealt with.
3. Taking care of your diabetes is about taking care of your mind and well as your blood sugars.
4. Know that talking to someone will help. “A problem shared is a problem halved”
5. Know that, sometimes,  your nearest and dearest; your parents, your family, your friends, even your husband may not be the best people to talk to. You won’t be completely honest with them about how you're feeling because you don’t want them to worry about you more than they already are. They want to protect you and you want to protect them.
6. You may have to pay someone to listen to you. But guess what? They don’t judge! They don’t say “snap out of it” or ask “how can I help” when you don't know the answer. They actually have a degree of some sort in how to get you to figure out how to help yourself!!! Yeah!
7. That the stigma attached to seeing a mental health professional is nothing compare to the hopelessness, the exhaustion of diabetes, the depths of despair or sadness that you feel now.

Ask for help! It is there. And here are some good places to start; Jigsaw  Your Mental Health Spunout.ie And lots more.

Diary of a CGM Sensor

At the end of November, I will have been wearing my Continuous Glucose Monitoring System (CGM) for one year. And I really don't know how I lived with type 1 diabetes without it? I know that I am unusual in that I get 21 to 30 days out of each sensor I wear. Or maybe my immune system is just completely useless altogether? So, I thought I would take a photo diary of the life of one of my CGM sensors and take you through what it looks like.

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Hypo Feelings and Heroes

Hypos, or low blood sugars happen! They do. And they happen no matter how much time and effort I put into trying to avoid them. But have you ever asked yourself “How do my hypos affect everyday life and how do I feel about that?”

“More than 9 out of 10 people alter their insulin doses out of fear of hypos”

“50% of people worry about hypos often or all of the time”

Before last weekend, I had never asked myself either of those questions. And then, I attended Medtronic Europe’s first Diabetes Community Exchange conference in Barcelona, Spain, where one item on the agenda featured research on this very topic.

To be honest, I was completely sceptical about this hypo awareness programme because I felt it was a bit like preaching to the choir. I mean, dealing with hypos is one of the first things that people with type 1 diabetes are warned taught about when we are first diagnosed. And so, I thought “Of all the things to spend money on?”.

BUT!!! When I saw the research surrounding how hypos make us feel, it prompted me to explore my own feelings around hypos. I realised I had never asked myself either one of those questions before. And I'm quite surprised at what I discovered. I hate them! And I hate the way they make me feel.

Not the symptoms of a hypo but the emotions I feel as they happen or afterwards, the;

- Frustration at having to stop what I'm doing or break concentration to treat them. - Fear and anxiety I feel at the prospect of them even though, I find them easier to fix than high blood sugars. - Resentment when they interrupt a family day out. - Resentment that I had to tell my then 8 year old son, rather sternly, to please stop asking me questions. I'm low and need sugar. In effect I had to tell him to go away. - Hate that I felt I had to teach my children as toddlers how to call the emergency services just in case mom doesn't wake up. - Anxiety when we decide to go for a family walk in the park or woods and how hypos always, still seemed to catch me out. - Hate that it makes family and close friends feel uncomfortable. (I once had a hypo in my endocrinologist’s office and even she panicked. Think about it - how often has she seen a hypo in real life.) - Hate at how some friends react in an unhelpful way and can be hurtful. I tend to still deal with my hypos discreetly in these situations. - I used to think hypos didn't affect anyone but me but that's a big fat lie and I hate that.

Now that I knowing how I feel about hypo I think it makes me a stronger person to deal with them. I can prevent these negative feelings from festering and becoming a monster. And it does feel good to blow off some steam.

The #HypoHeroes campaign and dedicated website is full of useful information but it doesn't just focus on the physical aspects of hypos; it incorporates the emotions around experiencing hypos, especially in the “Behind the Mask” zone. It has some real life videos of people talking about what happens when they or their child with type 1 diabetes has a hypo. It also offers helpful information to minimise the impact on your life. This website is very well researched, very well thought out and it is supported by IDF Europe. #HypoHeroes gets its official launch on World Diabetes Day, November 14th. Well done Medtronic!

It's also worth mentioning that if you nominate a hypohero a donation will be made to IDF Europe from Medtronic, who will use it to support people with diabetes all over europe.

Medtronic Europe’s Diabetes Community Exchange conference included diabetes bloggers from all walks of life representing Austria, Belgium, France, Germany, Ireland (that’s me), Netherlands, Russia, Sweden, Switzerland, England and Wales. All amazing bloggers, diabetes community leaders and advocates. And one actual D-friend I knew beforehand; I got to hang out with our recent Thriveabetes speaker, Gavin Griffiths, properly. He got to meet the not-so-stressed-completely-exhausted me:-D

Medtronic get a very large, bright gold star for a very well organised event, for being so considerate in getting all of us there and for taking care of us so well. For me, there was a good balance of time to decompress privately and social time to get to know the other bloggers. They even included a workshop specifically for us to think about how we cope with our own diabetes. As bloggers, we tend to focus on what other people need for their diabetes rather than what we need to take care of us and our own diabetes. This workshop was provided by Rosie Walker from Successful Diabetes.

As to be expected, when a company sponsors an event, there is a product pitch, but they did leave it til last and it wasn't compulsory to attend. It was the new stand alone, connected Guardian Connect which I will feature in a separate post.

DISCLAIMER; Medtronic paid for all of my travel expenses from Ireland to attend but did not influence my opinions. My invitation came through IDF Europe and I am very grateful and proud to have been their nominee.

Am I a bad Diabetic?

Those that know me, know that I do everything I can to stay healthy and that sometimes it doesn’t work. So in times when I behave like a person who does not have type 1 diabetes I struggle with guilt.

Does that make me a bad diabetic? No! I am not!

Am I a bad diabetic when I have days and weeks of blood sugar readings well outside of the “good” range? No! I am struggling with life outside of diabetes and need a hug.

Am I a bad diabetic because I have a Glass of wine? NO! I am normal.

Am I a bad diabetic because I have because I have cake or sweets, or dessert, or whatever you’re having? No! NO! No! And HELL NO!

Because I have Supermac's or McDonalds or, God forbid, a Chinese? NO! NO! NO! NO! Sometimes life makes this necessary.

Am I a bad diabetic because I only do 4 blood glucose checks when I normally do 7? No!

Am I a bad diabetic because I have a low blood sugar “episode” or hypo? No! They happen, I wish they didn’t but they are a side effect of the drug that keeps me alive. Hypos happen!

Am I a bad diabetic because I wear stylish shoe…. With heels? No! I am a woman.

Am I a bad diabetic when I am just doing what people who do not have diabetes do in their everyday lives? No! No, I am not.

The end!

Diabetes Health & Wellbeing Exhibition

World Diabetes Day is in a few short days and I feel like this year has been AMAZING!!! There are so many campaigns to be part of such as The Big Blue Test, and the JDRF's T1D Looks Like Me and Diabetes Footprint campaigns. If you would like to find out more of what's going on, here is a really good round up on Diabetes Mine. I've also been posting daily diabetes facts/thought/experiences on my  facebook page and sharing with my family and friends. Others are welcome to share them too and put their own personal experience on them.

In Ireland, on Sunday 13th November, 2016, Diabetes Ireland is hosting a free Health & Wellbeing Exhibition for all people living with & at risk of developing Diabetes in Ireland.

Where: Chartered Accountants House, 47 – 49 Pearse St, Dublin Centre. Date: Sunday 13th November 2016 from: 12 noon to 5pm. More information here.

I’m planning to attend because it’s the launch of the organisations 50th year in existence; an organisation that I am forever grateful too. But also, because there are 20 exhibitors planning on attending so it would be a good time to find out what’s new in the diabetes world and maybe even update my blood glucose meter:-s

But I’m most excited about the medal ceremony to 20 people who have lived with diabetes for 50 years. I really hope that I get to meet some of these people too. How inspirational is that!

Remember 50 years ago was 1967 and no one had a blood glucose meter and no rapid acting insulin. No one knew what they’re blood glucose levels were outside of the hospital. I mean; anyone who has come through that is a SURVIVOR!!!

Funding the Freestyle Libre

The long, long, long, long, long, long awaited Abbott Freestyle Libre has been officially launched for sale in Ireland on November 1st. Click here to purchase. The Libre is a less invasive method of checking blood glucose levels and provides a profile of blood glucose trends in a graph on a reader device for up to 14 days. And for most people with type 1 diabetes, the finger prick blood sugar check is not the worst part of living with type 1. But, the not knowing what your blood glucose is between finger prick to finger prick is a crucial missing piece of the living with type 1 diabetes puzzle.

I was very honoured to be invited to an advance briefing on the Abbott Freestyle Libre with several other members from the diabetes blogging community on October 13th.

(DISCLAIMER ALERT!!) Abbott paid for my travel expenses from Clare to attend but they did not ask me to blog about or influence my opinions of the Libre. I was asked to try out the Abbott Freestyle Libre with two sensors and given them for free.

CONFIDENTIALITY - we also had to agree to not discuss our briefing outside of the room until the media embargo was lifted on November 1st. This was really difficult, I think for all of us as members of the diabetes community and not being able to talk about it with our community. This was really difficult!

I have been following the Libre since it’s launch in the UK a couple of years ago. I don't think there is any doubt in anyone's mind that the Libre will revolutionise diabetes care, especially in Ireland, and more importantly, improve the quality of life for many people living with diabetes. The launch of the Libre in Ireland will give more people access to the blood glucose data that has only available to very few who have been able to acquire CGM systems.

I feel that my opinion of the Libre may be different than most people who are buying it, in that they are moving from finger prick blood glucose meter checking to the Libre. I, on the other hand, have been using a CGM for a year, so the information “wow” factor didn't exist for me when I fired up my Libre because I had that information "wow" factor (“Really, that’s what two slices of toast does to my BGs!”) a year ago.

I may do a full review of how I found using the Libre in a later post but for now I want to share some of the information I learned from the briefing and from making some phone calls about funding the Libre.

As you may have heard, the Libre is not available on the government funded Long Term Illness Scheme which provides all approved diabetes medications and supplies free of charge. Yet!

Abbott could not comment on what stage they were at in the procurement process with the HSE Long Term Illness scheme. And declined to offer a contact within the HSE that we could chase after - I suppose who could blame them. So, for now, here are a few tips that may help you cover the cost of the Libre.

The Libre starter pack of two sensors and a reader costs €169.90. After that each sensor costs €59.90 and if you break or lose your it will cost €59.90 to replace it. It is a big financial commitment for a person living with diabetes and here are some options to help with the covering the cost of it;

Tax Relief through the Med 1 Form

One option available to everyone is to claim tax relief via the Med 1 form from Irish revenue. This will reimburse you 20% of the cost of the Libre and subsequent sensors every year. You just need to keep your receipts from all your purchases.

Private Health Insurance

The other option that may be available in the near future is that there are at least two health insurance companies who provide benefits for a an approved Medical Appliance purchases. I spoke with Laya Healthcare as they are my insurer and only share the list of approved medical devices with members. Currently, there are no blood glucose monitoring devices  listed on Laya’s Approved list of Medical Appliances, only a Glucometer. Laya reviews their list annually, so I have hopes that all glucose monitoring devices will be included in the near future.

Initially, the cost of the Libre might seems expensive and does add up, it's not anyway close to the cost of a Continuous Glucose Monitoring System. And they value of the information it provides you with to help manage your diabetes better and more effectively is priceless.