Monday, 7 March 2016

Maculopathy and worry

I'm a worrier.  There - I said it.  I worry about things that I suspect most regular people don't worry about... I spend a fair proportion of my time convinced I've mortally offended someone, and that the sun might not come up tomorrow.

Having a long term condition like Type 1 diabetes unfortunately comes with a fair amount of worry as standard.  The longer you live with  it, the more aware you are of what can go wrong.  Whilst some of it lies within your own control (stable, lower HbA1c, attend regular checkups, good diet, active lifestyle etc.), sometimes life throws you a curve ball.

For me, that came a few weeks ago after my annual retinal eye screening appointment...

"Your latest eye screening showed results of diabetic maculopathy..."

What?  Worry levels set to max.

A small segue to talk about language... is that sentence above what anyone wants to read?  No.  Is it a bit clinical?  Yes.  Is there a better way of doing it though?  Not sure.  If there's something wrong - I want to know.  An alternative along the lines of "there was something wrong/abnormal on your last screening..." is more vague and isn't less comforting.  Language helps, but here I think it's a tough one to crack.

So I phoned up and made an appointment for the eye clinic.  You may have noticed I was in Glasgow last week so I had to wait until today for my appointment.  Worry levels dropped slightly, but remain constant.

My confirmation letter turned up before I went to Glasgow and didn't fill me with confidence...

Maybe it's a test?
So this morning I took my daughter to school and headed off to the eye clinic.  By this time, I'd had chance to talk to a few people who'd received similar letters and nothing had come from it.  Worry levels lowered.

Now the thing with the Eye Clinic is that it's very different to the diabetes clinic.  Different hospital, different environment, lots of people there for a lot of reasons.

Thankfully the sign is big enough
It's basically chaos.  The whole thing is overseen by a receptionist with 10 different paper lists which she updates as people hand over their different coloured appointment letters (all whilst she's sorting some other problem out on the phone).  It's not welcoming in the slightest.  Worry levels increasing...

I'd got there early (overly worried about being late) and was whisked away for an eye test and some drops.  Interesting point to note is that if you're ever asked to read a line on the eye chart, you don't have to just try and read the bottom one (I thought it was a game).  If there's a red line across the middle, that's the average - anything below there and you're doing well!

"Drops will take 20 minutes to work and wear off in 3-4 hours.  Through the grey double doors and wait outside room 8 please"

This is the door opposite room 8.  Worry levels increasing.

The 20 minutes of purgatory you go through when waiting for the drops to work is a strange time.  Your vision gets gradually worse whilst you contemplate your vision getting worse.  It's also a time for people watching (the national diabetes sport).

There's a lot of things to dislike about waiting rooms.  I often feel they're a window into your future to some extent.  A few people turned up with orthotic shoes on.  Someone else had an eyepatch.  Everyone was older than I was and it seemed unfair (not for the first time), that this was happening to me.  Worry levels replaced by despair.

Finally I got the call.  I'd been in the building for almost 40 minutes.  I was in the consulting room for another six.

The doctor told me (with a smile on her face), that I was the first Type 1 patient she'd seen for a while.  I smiled back, but wasn't sure I'd got the joke.  She told me my previous HbA1c results were good (thanks!) and I mentioned I'd had it tested in Glasgow last week and it was 49mmol/mol (or 6.6% in old money)...

"Wow" she exclaimed.  "Be careful!  Do you have any hypos?  Do you drive?"

As we all know by now, that one exchange is a blog in itself.  My HbA1c is above NICE recommended guidelines (and will no doubt stay there).  Of course I have hypos, I inject a drug that causes them if I don't eat exactly the right amount/do any exercise/it's a bit warmer than usual.  Of course I drive.  Why wouldn't I?  Normally, I'd have said something, but I'd had enough.  All I wanted to know was how bad the results were.  Worry had returned.  Despair had fled.

"Look here" she said, indicating to the top of her ear, shining a bright light into my eye.  "Look up".  More shining.  "And down" eye drops and bright lights don't mix well.  "To the left".  Almost over.  "Aaand right".  Repeat for the other eye.

"OK, I'm happy to discharge you from this clinic" she announced brightly.  Eh?  What?  You sent me a letter that said maculopathy.  That's bad.  I've been worrying about this for over a fortnight.  That's it?

"How do you mean?"  I asked.  "Just go back to normal eye screening every 12 months?"

"Yes, yes that's fine!  I mean there's some bleeding..."

"What now?"

"Yes but it's perfectly normal" she said as I climbed down off the ceiling.  "Sometimes when you've had diabetes this long, you'll get small bleeds in the tiny blood vessels, but it's any leaking we're worried about.  There were a few spots on the scan, but I can't see them now so it's all fine".

OK.  I'm convinced by that I think.  I picked up my coat and bag and paused.  It's still my appointment right?

"Can I have a look at my scan?"  I asked.  No problem.  "Can I take a picture?"  She looked a bit taken aback this time, but again, no problem.

So here it is.  This is the thing that's had me worried for over two weeks.  You might be able to see a few tiny yellow spots to the left of centre (depends on how big the image goes for you).  The bleeds are a little to the right, as tiny red dots.

Eye eye
"Nothing to worry about".... tell me another one.

Thanks to everyone that spoke to me about their experience of "that letter" before I went for my appointment today.  I won't name you here, but if you're reading this, you should know who you are.  Your support was really helpful.  Thanks again.


  1. One of my best friends from college has type 1 diabetes, and I am always surprised by some of the stories he tells about living with it. I'm happy to see that everything is perfectly normal with your eye, I am sure that was certainly a big health scare. Love the blog title too by the way!

    Doris Gibbs @ Moody Eyes