Ehlers-Danlos Syndrome and Type 1 Diabetes when you’re six

I haven’t had much to say on a personal level in 2016. It wasn’t the best of years for many and it will most certainly be one of the most memorable for us. Supergirl was diagnosed with Type 1 Diabetes in August 2016, on top of but unrelated to her EDS and it triggered a bit of a tsunami in our lives. There are very few people in the world that have both, which has caused quite a few headaches.

If it was just another condition, I think it wouldn’t be so life changing, but EDS and Type 1 Diabetes do not go well together. Her skin issues affected insulin injections which makes diabetes management murkier waters (as if it’s not already murky enough!). Her digestive issues affects her absorption of carbohydrates and that affects her insulin requirements in an unpredictable, unknown manner. Pain affects her blood glucose levels quite a bit. Finger prick testing regularly dislocates her fingers. Cannula and sensor insertions that should be relatively painless is very painful. Her headaches have taken on a whole new dimension and we have no clue why. It’s been complicated.

Six months later and we are starting to get the hang of it a little bit more. She now has  Medtronic pump and integrated CGM which makes the world of difference to us all. I kept meaning to write this post when I had more  to show for it – more experience, more knowledge, more solutions to the common problems that keep popping up. But dealing with my health issues and her health issues has eclipsed all productivity and when I have a moment or two, I find myself drinking a cup of tea instead of actually doing anything remotely productive.

After her diagnosis she thought a lot about what it would mean for her and how her plans for the future had changed. Watching me spend forever at my computer, researching Type 1 Diabetes, EDS and potential correlations between the two, she came to sit next to me one day and said, ‘Maybe I can help. Every problem I have had so far, we figured out the solution. Maybe if we put it up on the internet, we could help other people who also can’t find the answers, find the answers we’ve figured out!’ Some debate ensued and after much discussion, she decided that she wanted her own blog,  so that she can share what she’s learned/is learning with others ‘who may have no idea how to carb count, change a cannula, inject insulin or understand all the math that I have to do’.

We created Project Serenity – please have a look. We haven’t done much there yet – she’s been really unwell and haven’t had much time to spend on the videos she wants to make or the articles she wants to dictate (typing a sentence takes an hour for a 6-year old, but get them talking…!). There is some info about EDS – and there will be more in the near future, particularly focused on being six and having EDS and what that means.

We’re hoping that 2017 will be a year of more successes and fewer setbacks in life. Fingers crossed I’ll be finishing my degree and I’ve started writing a novel I’ve secretly wanted to write since forever but never thought I’d be any good at, but  life is short, I’ve been reminded again, don’t put anything off, find time to do the things you’ve always secretly wanted to do! I spend most of my time on health-related problems, carving out solutions with a blunt teaspoon and have discovered that in order to resist the urge to start scooping out life with a spoon, finding some time to do something for myself is more important than I ever realized. So hoping 2017 will be the year we discover balance.

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