Unpredictable, unpreventable…mess

Back in 2011, doctors initially diagnosed me with type 2 diabetes. Within a matter of weeks, they diagnosed me as MODY (Maturity Onset Diabetes of the Young). However, blood tests showed that even this wasn’t the case. So they told me I simply had diabetes type 1.5. Talk about leaving me in the lurch!

Consequently, I spent 18 months trying every single form of tablet for diabetes treatment. Nothing worked. I was either too sensitive to the doses, or the tablets didn’t affect my glucose levels.

Every day I wake up and wonder how sensitive my body is going to be, that day. You see, I check my glucose levels. I check them A LOT. I check them when I wake up, I check them before and after meals, before and after exercise, before driving, and after correction doses, to name a few scenarios.

If I’m being honest, I really don’t like to correct my glucose levels, and generally I don’t tend to correct, unless I’m in the teens. Historically, there have been times when just 1 unit of insulin knocks me to the ground, and there have been times when 1 unit does absolutely nothing. My stubborn pancreas refuses to let it in, and so I have to wait hours for my levels to come down, in their own time. I’m not a patient girl and it drives me crazy.

One thing I haven’t quite sussed yet, is what determines how sensitive my body is to insulin. It just seems that my pancreas has a mind of its own and entertains itself on a day to day basis. My pancreas cares not for how I’m feeling, how tired I am, or the fact that I’m going out to eat later that evening, so don’t want to have to treat a hypo/stuff my face before then. Stupid pancreas.

I’ve been lucky enough to be given an insulin pen that deals in half units. This is great, considering just 1 unit can sometimes bring me down 4-5 notches. But how do I know if the correction dose is going to bring me down 4 or 1? I know that various things can affect glucose levels – stress, illness, adrenalin. But not even those factors produce any sort of consistency when I’m looking at how much the correction dose will drop my levels by.

I’ve tested so many times, throughout the day and night *yawn*. I keep a log of my glucose levels, but it makes no sense to me. True to say that this has been a stressful 6 months, and my body might well be changing. In truth, I don’t want it to. Diabetes is tough enough, why make it even tougher?

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The other side of diabetes

Earlier this week I spoke about how I find the online community a strong tool for support. Today, I want to show how support comes to me also in the offline world.

I’m very lucky to have a close family, boyfriend, friends who also have diabetes, and friends who have no experience of the condition. This post today is going to focus on those friends who have no experience of diabetes.

Up until now, I’ve assumed the view that those who don’t have diabetes, don’t really take much notice of the condition. To them, I have diabetes, I inject insulin and sometimes need to guzzle a sugary drink. End of. On the most part, I’m fine with that trail of thought. Why should they be interested in something that doesn’t concern them? Unless someone asks, I don’t tend to talk to anyone other than my family and diabetic friends.

I have recently been stopped in my tracks, and given some food for thought. A friend sent a message that when I read it back, I wanted to cry. It’s so heart-warming to hear someone say they want to understand what I’m going through.

“I want to understand how you deal with it on a daily basis”.

My initial reply (perhaps mirrored by all of you who have diabetes) was I haven’t a fricking clue! Just how do I deal with injecting 5,6, sometimes 7 times a day, when I hate the thought of needles? How do I dare eat when my sugars are sky high? How do I manage to stumble to the kitchen and logically work out how much I need to eat, to get my sugar levels up from that pesky 3.2? How do I manage lugging all my diabetes equipment with me at all times, even when I have THE perfect clutch bag that I could be using…?

For about half an hour, I was giving bite size chunks of information about what diabetes is, why there are different types (type 1 and type 2 for example), and how diabetes affects me on a daily basis. The tiredness, the hunger, the cupboard raiding at 2am when I’m having a hypo. All distinguishing features of diabetes, that I’m sure a lot of people are familiar with.

At the end of the conversation, I was grinning like a Cheshire cat. I had been made to promise that I would sit down with my friend and really describe how diabetes affects me. Why the silly grin? Someone is taking an interest in my condition, and not because I’ve hinted that I want to talk to about it.

Oh, and don’t worry, I’ll be providing plenty of tea and biscuits to break up the boredom!

Let’s Talk

Let’s talk
Diabetes UK has asked this week who we turn to for support, and whether talking to other people with diabetes, helps. My answer in short: I turn to YOU, and YES, YES, YES!

Having been diagnosed in 2011, it took a good 2 years to start to connect with other people living with diabetes. My dad has diabetes, but because he is type 2 and I am type 1, our approach to diabetes is completely different. It wasn’t until I attended the DAFNE course, organised by my local diabetes team, that I even met another person who had type 1 diabetes.
From then on, I can honestly say my life changed. Meeting other people my age, who were living with the same monster that I live with, was enlightening. Hallelujah, I’m not the only one who feels like throwing their diabetes out of the window!

A month later, I attended the Diabetes UK Big Conference. Here, I met some incredibly wonderful people. They also have diabetes. That alone makes them incredible! Having dinner in Nando’s with a bunch of people who also need to check their sugar levels and need to inject insulin, was almost surreal, at that point.

Fast forward a year, and I really wanted other people to feel as relieved as I do, when I talk to other people living with diabetes. Thus began my voluntary role with Diabetes UK. There is nothing greater than having someone listen to what you’re going through, and agree with you, when you feel like you’re the only one in the world who has to deal with the highs and low’s of diabetes.

The majority of the peer support that I have offered over the past 2 years, has been via the Diabetes Online Community (DOC). Twitter has been my main tool, and even though it restricts messages to a mere 140 characters, the Twitter world is truly gigantic. Finding the DOC was like finding buried treasure. Just like the buried treasure that I will one day find, the DOC is precious.

The DOC consists of people from all walks of life, different ages, different types of diabetes, lifestyles. I was diagnosed initially as having Type 1.5 diabetes, so imagine my delight when I was introduced to Lizzie, who also has type 1.5 diabetes!

It is because of the DOC that I decided to set up a blog, to keep track of my diabetes-related experiences. It is somewhat therapeutic having somewhere I can log my rants and woes that diabetes throws in front of me. What’s even better, is when someone comments on my blog, to say that they’ve had a similar experience, and know exactly how I feel!

In the real world, I often feel I’m in the minority. I’m the only one in my workplace who has diabetes. I’m the only one among my friends who has diabetes. I am a minority. I’ll admit that I never used to like that fact. Now though, it makes me feel special. I like being in the minority – even more when I can share my experiences with the DOC.

In answer to Diabetes UK then, I turn to the DOC for my everyday support. The Internet is always there. I know that if I’m having a 3am hypo, there will be someone somewhere, who is online. If I can’t sleep, there will always be mountains of diabetes related blogs that I can read. The DOC never sleeps! So, thank you, DOC. Thank you for being there, and being my friend.

Diabetes and Me.

Happy Diabetes Week. This year, the theme is Diabetes & Me. Diabetes UK wants us to shout about how we manage our condition well and live life to the full. Google ‘diabetes week’ or search #diabetesandme for example, and you’ll probably be bombarded with hundreds of results. That’s because like me, hundreds, even thousands of people are taking part in this special week, championed by Diabetes UK.
 

For me, the biggest thing that enables me to manage my diabetes well, is my attitude to the condition. Let’s face it. If I didn’t have diabetes, I’d probably be staring at the TV, saying how bored I am, right now. The truth is, that despite its implications and potential of complications along the line, my life has changed a lot since being diagnosed with the condition in 2011. It’s changed for the better, that is.

Sure, diabetes is a horrible condition. The highs and the lows leave me feeling angry and wallowing in self-pity. It makes me want to throw in the towel, or at least pay someone to take my diabetes away from me.

Take my diabetes away from me. That right there, is what makes this condition so incredibly fascinating, in my eyes. You see, nearly 4 years have gone by and I’m still here. I am privileged enough to be able to check my sugar levels on a regular basis. I have access to test strips and insulin. I can even contact my local diabetes care team, to ask for their help (EDIT: beg them to help my sugars come back down so I can feel normal again). I’m very lucky.

And you know what, I don’t think I really would want my diabetes taken away from me. Not at the moment, anyway. I know, I sound slightly crazy, but there is logic to my madness…

Because I have diabetes, I’ve met some wonderful people, who now form a BIG part of my life. I never fail to be amazed at how many people online and offline, have diabetes and are advocates for living well, with the condition. Each and every person in my life who has diabetes, is a star. Diabetes is a full time job, on top of everything else in life. How amazing is that?!

It’s not just the people who have diabetes though, it’s the people who care for and support us. The nurses. The consultants. The podiatrists. Etc. I’ve had a lot of support from my diabetes team over the past 4 years. All the DSNs there are wonderful people. I’m going to push the boat out here and single out one particular lady, who was there right from day one. Jacqui.

Jacqui was the first DSN I saw, after being diagnosed, and really, she put up with a lot from me. All my pesky health conditions that have an effect on my diabetes. The fact that I don’t appear to have any hypo awareness. It really felt like Jacqui couldn’t do enough for me. When the consultants seemed to have forgotten about me, I would often have phone calls from Jacqui, telling me she’d been looking into Silver Russell Syndrome (SRS) or how my IBS could be affecting my diabetes. It was only through Jacqui that my GP agreed to arrange for numerous investigations, to delve deeper into my so-called  IBS. It really felt like Jacqui was the only person who cared about me. Jacqui didn’t have to dedicate countless hours to finding out about SRS or IBS, or writing letters to my GP, but she did. She went beyond her responsibilities to help me.

For me, my relationship with Jacqui was the first time anyone had showed any level of interest in who I am, rather than just what numbers my sugar levels were on a daily basis.4 years down the line, there are still people like Jacqui, who don’t just care about numbers. I think I’d probably have lost my mind by now, if it were all about numbers.

So then, I guess I am grateful almost. My diabetes has opened a world of opportunities – opportunities that I wouldn’t have had if I didn’t have diabetes. I’m off to the World Diabetes Congress in Canada later this year – I certainly wouldn’t be going to that if I didn’t have diabetes!