I don’t like a fuss about anything much.  I dislike being the centre of attention at birthdays and parties; its not that I don’t like them, more I like to be part of a bigger thing not at the centre of something.  But when it comes to my Diabetes I had an insight this week that my inherited stoic approach to my personal health might not be for the best.

There is no doubt in my mind Diabetes is tricky every single day.  I can’t do many things without thinking first: a latte with a friend (how much milk and how much carbohydrate), a long walk (where are those pesky glucose tablets and where shall I carry them) a night away (do I really need to take all this stuff?), and that’s just the tip of the iceberg.

Through personal preference I don’t talk about this all very much.  I have to do it, not you, and why would you want the boring details?

But of course this behaviour masks what is going on and renders my Diabetes, a big part of my way of life, invisible.

Does that matter?  Sometimes it does, sometimes, knowing these things about me is helpful, it might explain my tubing poking out of the top of my tee-shirt or my seemingly sudden lack of focus, or my trying to cram biscuits in to my mouth.  Not very glamorous is it really?

So what is it that I feel inhibits me?  Is it about me or is it about the environment in which we live?  Sadly, its about both.  I am not predisposed to share and people are interested in differences but not always for the right reasons.  Responses like: ‘Should you be swimming?’, ‘Shouldn’t you be at the Medical Aquafit not the normal one?’, ‘Should you be eating that?’ and ‘Did you really have a baby?’ are irritating narratives in my life.

My contact with more people with Type 1 via social media has encouraged me to be more open but I still do so with a feeling of unease.

So why do I think it matters?  I think it matters because it is really hard. Much as I want to be seen as a strong woman who copes with really well with her life, sometimes, sometimes, it stinks.  And if I don’t tell you, how will you know?  Because when life stinks its always helpful to have the kindness of people.  So if you know someone like me, empathy but not sympathy is the best answer.  I don’t want sympathy but I would like people to know how hard it is!  This week has been a hard week.  High readings that make you feel frankly shocking for no perceivable reason other than that it’s Diabetes.

So don’t judge me if you see me in the supermarket cramming food that hasn’t been paid for yet into my mouth.  The choices are stark…. eat or pass out on the floor!

People with Diabetes are not alone in having an invisible disability.  Watch this great video by Pam Relph for some insight into invisible disability and if you are on Twitter have a look at #morethanmeetstheeye.  Its an old hashtag but worth a look through.

PS Why do I still feel whingy writing this post?  I hate feeling whingy!

Can you remember where you were in 1979?

That’s how I started my TADTalk2016. I was privileged to be asked by Dr Partha Kar to speak at the inaugural TAD – Talk About Diabetes – talks. The event was a series of speakers who all had Type 1 Diabetes; each gave a story related to their experience. It is the first time I have really talked about Diabetes and my journey – I have talked about the menopause to a small group and talked about social media but never my personal account of Diabetes.

The other speakers were inspirational: Joe, who was a professional cyclist, Lis who has had T1 for over 50 years and at times has struggled with food, Laura who has had many struggles of her own including nearly losing her sight, Wes from the wonderful, inspirational #wearenotwaiting project where parents of children with T1 are taking action to find solutions, Jamie Reed MP who was diagnosed at a key time in his political career and went on to win his seat and Richard who was the first person to receive an islet cell transplant.

I felt inadequate – I had no dramatic story to tell. My story is one of ordinariness – I wondered why I had been asked to speak.

I decided to tell the story of my journey through three decades of care but I have no highlights, no major events or dramas that light up that path. Was that enough? Do I need to have struggled with the dark art of diabetes to have a story to tell and more importantly one that people want to hear?

So what was I doing in 1979?

I was leaving school, in the same month as Margaret Thatcher became prime minister. I was wearing platform shoes and on occasions long white socks, as you will see if you look at my presentation. I had my first serious boyfriend and we spent our spare time roaming on his motorbike around the Yorkshire Moors the North East Coast and beyond. I was fiercely independent even then, as a child from a broken marriage. I had been in my first proper job for around 2 months when I was diagnosed, promptly via a blood test by my GP and spent a week on an adult medical ward where I saw people die and helped the nurses do the teas and fed old ladies at mealtimes. I was 16.

In the decades that followed there were many changes to my diabetes care. Sometimes those changes have been a challenge to accept. If you have been told you must do something for a decade and then someone changes the rules, on what often feels like a whim, it can be difficult to do. But I’ve coped. I have never been in hospital as a result of my diabetes, except one trip to A&E when I put my back out when I fitted as a result of a hypo – I was back at work the next day. I refuse to give in and I have not really had any time off work since 1979 as a result of having T1. I’m touching wood and the cat for luck as I type these words as of course anything could happen tomorrow, or the day after, or the day after that….

So what is the point of my story?

I think I have learnt to be resilient and I think that is a key skill and attribute for someone with T1 to build.

What do I mean?

Psychological resilience is defined as an individual’s ability to properly adapt to stress and adversity. Stress and adversity can come in the shape of family or relationship problems, health problems, or workplace and financial worries, among others.

Psychological resilience – Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Psychological_resilience

Sometimes Diabetes can feel like you take two steps forward, and one step back. Resilience is knowing that despite this you are still moving forwards.

Resilience can be learnt. For people with diabetes I believe that resilience is built not through the formal education for diabetes, important as that is, but developing the know ‘how’ of diabetes; the practical know how to live with the challenges of stress and adversity too.

Peers have been increasingly important to me in the last 6-7 years. Support networks, whether they by family, friends or peers can help you to stay focussed and pick yourself up. They can also be an incredible source of shared knowledge.

I am intrinsically an optimist and that helps too. I like life goals, not HbA1C targets, but vital ones wanting to have a family (which I went on to do), I wanted to be a nurse and I still want to make an active contribution to society in any way I can – my life goals.

Looking after yourself is key, taking time to do what makes you happy. Keep a positive view of yourself and look after your mental health and well-being as much as you do your physical health. Taking time to reflect and mindfulness – living in the here and now and not worrying too much about tomorrow – can help.

Laughter is an important part of my life – I love laughing and making others laugh with me.

Stay up to date and keep on top of what is going on in the world of diabetes. I use social media to do this but there are lots of ways including being a member of Diabetes UK.

And finally knowing when to seek help is very important to maintain resilience.

So mine is a story of ordinariness. No drama and no crisis (yet). I hope that story was enough on Saturday as I represent the ordinary folk, those who just get on with it and cope with managing the dark art of diabetes. Long may my ordinariness last!