Happy Blog-aversary!

This month, I will have been writing this blog for five years. Holy Moly!

What started out as a way to find more people with type 1 diabetes became therapy for me. And because it started out as a way to try and find more Irish people with diabetes, and more specifically to connect with more people with type 1, is why I named it Diabetes People.

I didn't think that there was enough thoughts in my head about my own life with diabetes to maintain a blog and so I had intended to ask other people to share their thoughts and experiences in living with diabetes too.

I also thought that if I came across a valuable piece of information for people with diabetes that posting it in one place one time was not going to reach very many people. And so, I would try to help post it in as many places as possible to make it easier for people with diabetes to find.

The idea of sharing other people's diabetes stories didn't really take off, so my blog became more about my own life with type 1 diabetes. I post once per week and I've tried to remain constant with that, except for a little while where I need all of my headspace to deal with heavy issues.

I've always used writing as therapy when I'm overwhelmed, ever since I was a teen. I knew I wasn't very good at writing and never had any expectations that I would become a successful blogger. I still believe that.

Happy 5th Birthday Diabetes People Blog

I didn't dare hope that I could be like any of those really talented writers with diabetes; like SixuntilMe's Kerri Sparling, BitterSweet's Karen Graffeo, those on Diabetesmine, etc. to name but a few.

Thankfully, I didn't have to rely on this blog to connect with irish people with diabetes. Thanks to Facebook groups we have a strong diabetes online community in Ireland; several in fact. And of course there is my diabetes support group in Ennis, Co. Clare.

I really appreciate all of you who take the time to read my musings and opinions, however "out there"they may be. I hope that I have helped you in small way, as you have helped me by appreciating this blog.

So five years down and I still feel like this is only the beginning :-D

Friends for Life Conference Orlando

The Friends for Life conference (FFL) was started by the Childrenwithdiabetes.com organisation in the United States where families could meet each other and have a vacation in Disneyland.

Today, the FFLconference has evolved into a national mega-conference that 1,000 people with diabetes attend. It's open to ALL family members, including grandparents and now has programmes for the adults living with type 1 diabetes, as well as all the age groups of children and young people. They even have a FFL in the United Kingdom.

You may remember last August when I blogged almost endlessly after I had been lucky enough to attend FFL UK with my friend Christine!!!

The experience was fantastic and was where the seed of Thrive-abetes turned into a sapling.

So when I saw a post on Facebook from the Diabetes Hands Foundation offering scholarships to attend FFL or FFL MasterLabs I was jealous. Then! I remembered that I was married to an American and that we have planned to visit his family in Minnesota this coming July. I was actually going to be in the US while the conference is taking place and there fore less expensive to sponsor.

So I applied for a sponsorship!!! Hey, if you're not in, you can't win:-)

Guess what! Yep! I won a scholarship to the MasterLab advocacy conference which I have extended to include registration for FFL conference.

1st reason to be excited - I'm going to Orlando, Florida! I've never been before.
No. 2 reason to be excited I'm going to FFL!!!!!
No. 3 reason, well let me show you with this short video.

Diabetes Burnout

Living with type 1 diabetes, actually any diabetes, is a commitment to lifelong learning. My diabetes changes all the time and I need to learn all the time to keep up with those changes and adapt.

I don't remember the first time I heard the words "Diabetes Burnout" so I think it was at least 5-10 years ago. I do remember that while at that time that I had no experience of diabetes burnout. 

However, knowing about something and realising that it was happening to me were two different things. I still don't know if I've ever really experience diabetes burnout, or not.

I experienced some mild postnatal depression after I had my second baby. I was living in a new town, didn't know many people, I had two children under the age of 3 and was totally exhausted and felt alone.

My son's spent the first 7 days of his life in the NeoNatal ward and the Irish health system being as dysfunctional as it is I felt we were not treated very well, causing a distressing situation to be almost unbearable.

There was so much going on in my life that was consuming my mind and I didn't have any time, energy or thought space left for diabetes. I still did my blood glucose tests and injected my insulin but beyond correcting in the moment I didn't step back to see the overall diabetes picture. I couldn't!

I was just treading the water to keep my head above it. If I stopped treading, even for a minute, then I would sink.

This period of time made me seek out other people with diabetes for the first time! And with our new support group and the help of a new endocrinologist I came through it. It was slow but I was saved from drowning in my diabetes.

The second time I experienced diabetes burnout, it was a symptom of grief. Again, my whole being was consumed with trying to function in the basics of daily life that my brain could not see through the fog of sadness and grief.

It took all of my energy to complete mindless tasks never mind the tasks that required thought.

I have a fantastic husband but my concern for protecting him from how I was really feeling and my willingness to be sensitive to his grief also meant that the person who I always turn to was not going to be able to help me in this situation. This time I had to get help from a counsellor to find my way out of the fog.

Once I made that first phone call to make my first appointment the fog started to clear. I suppose the prospect that help was coming allowed me to breath a little easier.

People have talked about people with diabetes suffering from depression and maybe that's what I had both times with diabetes burnout being a symptom.

"Diabetes burnout" is not the same thing as depression, instead it is something that takes place when a person is either unwilling to change, or simply tired of the endless attention diabetes care requires. (from http://www.joslin.org/info/avoid_diabetes_burnout.html)

Diabetes burnout is very real and there is lots of information out there to arm yourself against it. Knowledge is power as they say.

Insulin Pump - What is it like to wear one?

In March 2011, I wrote about taking the leap to an Insulin Pump. I decided to revamp and update this old post because I've been asked more questions about what it's like to use one and be attached to one.(If you are not sure about how an insulin pump works or what it even is, go to this link.) I have been using an insulin pump for 5 years. The first one I had was the Animas 2020. In 2014, I upgraded to the Animas Vibe, which can be used with a Continuous Glucose Monitoring (CGM) System.

At the present time, I don't use the CGM bit because my team decided to keep things simple and apply for the upgrade first. I am in the process of applying for it through the Long Term Illness Scheme now.

Life before the Pump.

Before pumping, I was on a rapid-acting insulin called NovoRapid which I took with my meals and snacks or if I needed to correct a high blood sugar. I also took a long acting insulin, Lantus which I initially took once daily at bedtime but then for a while I took it twice daily; both morning and evening. I used the Insulin Pens which meant this added up to at least 5 injections daily or Multiple Daily Injections (MDI).

I measured my carb intake and I tested my blood sugars before meals and two hours afterwards to make sure that I was taking the correct amount of insulin for that meal.

I was frustrated about not being as in control of my diabetes as I should be for the amount of effort I was putting in.

Living with an Insulin Pump.

I did a trial period on the insulin pump before going “live”. This means that I would practice attaching it but not using insulin just yet. I used a saline and water solution instead of insulin. The purpose of this was to become less afraid of it and to become familiar with the button pressing and more importantly to figure out where and how I was going to wear it.

During the trial period, I wanted to fling the thing at the nearest wall – the tubing was always in the way. I had some doubts about whether or not I would be able to do this.

But I knew that if it didn't work out I could go back to MDI. I adopted a “if you never try, you never know” attitude. Plus, there were so many pump users in the world raving about its benefits that I had to believe the pros were going to outweigh the cons.

Once I went “live” this all changed. I adapted to the button pushing in about a week, in about two weeks I was comfortable with the infusion set change every three days and within six months it all clicked together.

The tubing hardly ever gets in the way and when it does it's an easy problem to solve. I have accidentally ripped out a cannula (the plastic needle bit that stays under the skin delivering the insulin) only once in six years. That's not bad going.

The highlights for me are;

- Convenience. I never realised how uncomfortable I was injecting insulin in public until I didn't have to any more. Now when I take my insulin, people think I'm checking my text messages. I don't have to flash flesh to do an injection either, removing any chance there may be of an awkward glance from some stranger across the room!

If I need to take extra insulin to correct high blood sugars, my insulin pump is always on my hip to do so, I don't have to move from my comfy spot on the couch in the evening. And I don't have to stick myself either.

- Pump memory The pump has a "history" feature so if I'm not sure if or when I took my last bolus dose and when I last changed my needle set.

- Adapt to unforeseen situations. I can be a bit more spontaneous without the fear of the subsequent hypos. I can chose to reduce my background (basal) insulin if my day becomes insane and I end up running around like a headless chicken. Or I can chose to increase my basal if I'm sick or having a very lazy day (AS IF!!!).

- Manage exercise. Exercise is definitely more manageable and I don't have to stuff my face so much afterwards. When I used background insulin once I had taken it I had to live with the effects of it for 12 to 24 hours. My only option to avoid hypos for those hours was to eat to feed that insulin. The insulin pump allows me to reprogramme my background insulin hourly if needed or temporarily.

No one ever sees my insulin pump. And not because I have it hidden - they just don't notice it. When they do they just assume it's a mobile phone and pay no attention to it.

And life with diabetes became just a little bit simpler by using only one type of insulin. I feel like my insulin pump gives me more of the control of my diabetes, instead of being a slave to insulin.

Using an insulin pump is not for everybody. It is a serious commitment to figure out background insulin rates and to constantly adapt to how your diabetes evolves and changes.

But in my case, I hope to never go back to injections.

A New Chapter in My Life with Diabetes

I started a new chapter last week in my life with diabetes. I have moved around a lot in my 22 years with type 1 diabetes. This also means that I have changed where I received my diabetes care a number of times too.

I firmly believe that my health care team should be one that I like, that I can open up to and that they know their diabetes stuff (believe me some are pretending). I had found that in my previous endocrinologist, Dr. D. She always told me that I was too hard on myself and that I was an exemplary patient. What a gem!

But I knew Dr. D would be offered something better, job wise, some day and I would stay with her until that day. I really didn't think we would make it as doctor/patient to her retirement.

When she announced that she was moving on in August 2014, I was sad but saw it as an opportunity to make a rest-of-my-life commitment for my diabetes care.

So, I decided that the time was right for me to move back into the public healthcare system.

I asked my GP for a referral to the Diabetes Centre in University Hospital Galway (UHG) last September and when I hadn't heard from them by January I gave them a call. BTW, "pro-active" is my middle name! Yes, it is!!!

At that time, UHG had a 15 month waiting list but given that I had no support, medically, since June 2014 they said that if my GP was to send another letter they would see if I could be seen sooner.

And hey presto, I got my appointment for the April 7. I did end up in the Type 2 Diabetes Clinic but that was a consequence of squeezing me in and moving me up the waiting list.

I met lots of friendly health care professionals and I have a good feeling about where our relationship is going. One of the best things about public healthcare, when it comes to type 1 diabetes, is the fact that it is multi-disciplinary. I met the one of dietitians during my appointment, which means I don't have to make separate appointments for that and I have a team of consultants. If one retires or goes on holiday there is always another one and I look forward to meeting all of them.

Plus, when I came home from my appointment. After I had caught up on the daily household chore without hypos, I saw that I had an email from the Endo putting the wheels in motion to get my Continuous Glucose Monitor.

Now, that's a good start!

Expert advice on food should come from a dietitian!

I volunteer with our local type 2 diabetes support group. They are a great bunch of people and so appreciative of everything you do for them and every piece of information you provide them with.

The great thing about our get-togethers are the faces change often and I meet new and interesting people all the time. It's not a requirement that you attend every meeting but I'm happy to say that most people attend most of the time.

At our get-together last week, we talked about a lot of things; from diabetes education options to the shock of being diagnosed and marched out of the doctor's office without any further information (Grrrrrrrr).

One individual asked the group about the fact that they were told not to eat lamb! A separate individual who has a grown up child with type 1 diabetes said they were told at the clinic not to eat pork or goose!!

I've heard so many comments like this over my 22 years with diabetes. Don't eat Grapes! Bananas are full of sugar! Carrots have too much sugar! Stay away from white bread! I have become a cynic and I question everything.

I regret that I did not handle these comments to the best of my ability. I did ask if the individuals knew why this instruction was given to them. And in the case of the goose & pork the reason given was that those meats have insulin. (!?!?)

I poo-poo'd the idea of not eating Lamb, Pork or Goose. I implied that I was more of an expert than a health care professional BUT I am not! I'm not qualified to give anyone health or medical advice and I'm usually very good about sticking to my side of that fine line.

However ridiculous the idea sounds, I do not have a medical degree nor am I a registered dietitian and therefore have absolutely no right to insinuate that I know better. There could have been any number of reasons why patients were told this (I hope). Just because I can't think of one or find one on Google doesn't mean that there isn't one.

I wish I could turn back the clock and that I had asked these individuals if that instruction came from a dietitian. A dietitian is a food expert and a healthcare professional.

However, not every health care professional is an expert (or even knowledgeable) about nutrition. They can't be unless they have received specialised training. A student nurse once told me that her degree covered diabetes in 20 minutes with no further information. That's not enough to cover even all the types of diabetes!

My party line will now be "Ask your Dietitian" because that's what I should have said last week. And they're amazing, especially the Diabetes Dietitians!!!