Diabetes Is...

November 14th is World Diabetes Day.  I'd been thinking about this post from March 2016 a bit recently and wanted to offer a different perspective when talking about the hard facts of living with a chronic condition.  I've lived with Type 1 diabetes for a little of 15 years and every day throws up new challenges and new things to learn.

Diabetes is sitting in your kitchen alone at 2am, eating because you've woken up shaking as your body alerts you to another episode of hypoglycaemia (low blood glucose).

Diabetes is lonely.

Diabetes is feeling like every snack and every meal is a challenge to be overcome.  Counting carb values, measuring blood glucose, calculating insulin doses and sometimes just hoping for the best.

Diabetes is relentless.

Diabetes is sticking yourself with a needle about 50 times a week, whether it's finger-prick tests for glucose levels, or a cannula in your stomach to deliver insulin.

Diabetes is invasive.

Diabetes is desperately searching for a shop that sells batteries, because your insulin pump is almost our of power and without it you'll almost certainly be hospitalised inside 12 hours.

Diabetes is frantic.

Diabetes is trips to your GP, to eye screening appointments, to hospital clinics, and to pharmacies.

Diabetes is clinical.

Diabetes is that unquenchable thirst, stiff joints, that shattered feeling and the blurred vision that can only mean your blood glucose is way too high.

Diabetes is tiring.

Diabetes is doing the same thing two days in a row and getting hugely different results for reasons you can't possibly figure out.

Diabetes is frustrating.

Diabetes is being reminded of your own mortality whenever you go for a check up.  Your eyesight, kidneys function, feet, and overall sensation are all things you fight to protect and preserve on a daily basis.

Diabetes is serious.

Diabetes is being stereotyped by media more concerned with headlines and sensationalism that science and fact.  It's being the punchline to jokes that simply aren't funny.

Diabetes is misunderstood.

Diabetes is planning and packing a bag full of supplies (and spares) for even one night away from home, let alone a proper holiday.

Diabetes is not for the spontaneous.

Diabetes is being susceptible to your environment - knowing that the temperature, time of day, or your level of exertion (to name just three) can affect your blood glucose.

Diabetes is all encompassing.

Diabetes is treating yourself to a takeaway on a Friday night and hoping you get your insulin dose correct otherwise you'll be paying for it in the middle of the night.

Diabetes is hard.

Diabetes is a huge strain on your mental well-being - and with all these things to contend with every minute of every day, it's hardly a surprise.

Diabetes is exhausting.

Diabetes is having friends to rely on who help you through the tough days, and celebrate the successes with you.

Diabetes is a community.

Diabetes is celebrating small wins - like waking up with a 'normal' blood glucose reading which never seems to happen as often as it should.

Diabetes is a success (sometimes!)

Diabetes is an individual condition and doesn't affect everyone in exactly the same way.  What works for some doesn't work for others.

Diabetes is like this (for me).

This isn't to suggest that it's doom and gloom the entire time because it really isn't.  I can eat what I want, do what I want and manage to look after myself pretty well.  But diabetes is very much an "invisible illness" that needs 24/7 management and that's a huge amount of self-care for anyone to take on.  It might look easy but it takes a lot of hard work to make it appear that way.

If you've got this far, thanks for reading.  Happy World Diabetes Day!

World Diabetes Day 2016

As part of World Diabetes Day on November 14th 2016, I posted regular Facebook updates about what it's like to have Type 1 diabetes. Those posts are presented here

T1D Looks Like Me

November is DIABETES AWARENESS MONTH (though I'm fairly sure every month is Diabetes Awareness Month...).

The current JDRF campaign for #T1DLooksLikeMe got me thinking about diabetes awareness.  I suppose to some extent there's a lot of awareness of the concept of diabetes at least.  The last few weeks alone have seen numerous TV programmes attempting to highlight some of the long term complications of diabetes and talking about what can be done to reduce the risk of developing Type 2 diabetes in the future.

The thing about living with a chronic illness like Type 1 diabetes is that it's all the things people don't see that really define what your life is like.  To borrow from Public Enemy, those who know, know; those that don't have no idea.

This is for those who don't know (yet).

Fourteen years of Type 1 diabetes in just four numbers

I've had Type 1 diabetes for just over 14 years.  I've had good days and I've had great days.  I've had bad days, and I've had terrible days, and I've had everything in between too.

As the graphic above says, I've had to inject myself with insulin almost 17,000 times (plus around 450 cannula changes since starting with an insulin pump in early 2013).  That's something that never gets any easier for me.  There's still always a sharp intake of breath and a second of silence before the needle goes in.  I still remember being told on the day I got diagnosed that I had to inject myself in the stomach multiple times a day otherwise I'd die.

I've had to test my blood glucose levels almost 31,000 times in the past 14 years (or around 6 times a day, every day).  Some of my darkest times I've had living with this were when I abandoned testing pretty much entirely for around 18 months about five years post diagnosis.  I was lost and unable to cope with the idea of living with diabetes, so I tried to ignore it.  I found out the hard way that doesn't work.

'You see a meal, I see a problem to solve'

Living with Type 1 is relentless - a non-stop series of numbers that you have to understand and act on.  Eating becomes something entirely different.  Sitting down at the table, you see a meal, I see a problem to solve.  What's my blood glucose level now?  How many grams of carbohydrate are in this?  How much insulin do I need to take?  Is it the kind of meal that means my levels will rise later on (I'm looking at you here pizza...)?  And you have that thought process every day, every time you eat.  There's little wonder that people with diabetes are more likely to develop an eating disorder compared to the rest of the population.

It's the little things that sometimes take the biggest toll.  Cutting short exercise because your blood sugar drops too low, or not even being able to start exercising in the first place.  Spending 50 quid on a glucose sensor and having it in the back of your mind every time you get changed because you don't want to knock it off.  Wishing you could take a shower without catching your cannula (or making sure you don't catch the tubing on a door handle because it's agonising when it pulls out when you least expect it).

'Shaking, sweating, dizzy and your heart pounding'

And then there's dealing with the extreme levels of blood sugar.  The lows (hypoglycaemia) that leaving you  shaking, sweating, dizzy and your heart pounding, scrambling for some fast acting glucose to get back to 'normal'.  I don't think I know what 'normal' is any more.  The other end of the spectrum is the highs (hyperglycaemia).  Feeling sick and sluggish, the insides of your eyes feel like treacle and you're left with an unquenchable thirst until you've taken insulin to bring you back down to 'normal' (there's that word again).

Finally there's the quiet voice at the back of your mind, reminding you about the potential complications of this... thing that I live with.  Compared to the general population, I'm twice as likely to have a stroke or heart attack.  I'm at risk of developing long term kidney and eye problems as well as neuropathy (loss of sensation in the feet and other extremities) which can in turn lead to potential amputation in later life.  You have to live for today, but tomorrow is never far from your mind.

I think you adapt quite quickly to living like this.  There's no alternative really - doing nothing will get you in all kinds of trouble really quickly.  One thing I've learned over the past 14 years is that you never stop learning.  Talking to other people with diabetes, going on courses, going to support groups... there's always something new to learn and your body will always throw you a curveball when you least expect it.

This is what Type 1 is to me.  A constant sea of numbers, staving off lows, fighting highs.  Being awake at 2am because I desperately need something to eat, or bleary eyed, I need insulin to combat high blood sugar.  Living with a chronic illness isn't easy - in fact it's downright exhausting sometimes.  But it hasn't kept me down yet and hopefully it won't in the future.

World Diabetes Day

Tomorrow (Thursday 14th November 2013) is World Diabetes Day (WDD for the sake of my typing).  It's going to be the first time I've "celebrated" it and I've been thinking about what it really means to me.

The short answer is "I don't know".  I've been diabetic for 12 years now and truth be told, I've only known about WDD for a couple of years despite it having been running since 1991.  Those with curious minds can visit the International Diabetes Federation website to find out a bit more about it and the significance the date holds.

Obviously I'm all for anything that helps promote awareness of diabetes and the various difficulties it brings.  There's without doubt a certain stigma that comes with it as many people are unaware of the different "types" of diabetes and the different causes/effects of each.  Again, I'm not going to shove the information down your throat, but Diabetes UK have a pretty quick and effective guide to Type 1 and Type 2 diabetes if you're interested.

I've done a fair amount of work over the last 12-18 months to help fundraise and awareness on behalf of Diabetes UK (thanks to everyone who's supported me in those ventures) but I'm still unsure of the best way to "mark" the day, or whether I need to mark it at all.

I've got some great friends within the Diabetic Online Community (#doc) as well as some great relationships I've formed with people I've met via hospital courses or through my local Voluntary Group.  I'm sure tomorrow will be like many others in a lot of respects in that I'll experience a few highs and lows (physically, metaphorically and blood glucosely) and that I'll chat some of the same nonsense I always do.

After a little contemplation, I decided that I'll rock up to work in a blue shirt and tie (repping the IDF colours) and that I'll try and "live tweet" my day as a Type 1 diabetic.  I'll post my blood glucose readings, my meals, my carb calculations and some of the emotional responses that a "typical" day with diabetes can elicit.  (There's a lot of talk around the associated mental health problems people with diabetes can face that you may not be aware of).

If you want a snapshot into the world of a diabetic, or might know someone else who'd be interested, you can follow me on Twitter at @BroomOwl I'll do my best to tag my posts with #WDD and #DILOD (Day In the Life of a Diabetic) depending on character limits and all that.

I suppose tomorrow will be a chance to reflect and be thankful that whilst having diabetes can suck some of the time, I'm lucky to be alive in a time where modern medicine means I've got a pretty decent shot of living with it for years to come.

Thanks