Living with someone living with diabetes

Katie keeps a close eye on Tim
Katie keeps a close eye on Tim

In the first of a series of one article, my wife Katie describes what it’s like to go through a diagnosis of diabetes – when you’re not actually the person diagnosed. Warning – contains details of our first date. -Tim

When Tim asked if I would like to write an article for Shoot Up I have to admit I didn’t know if I was entitled to join the diabetic force, not having diabetes myself. However, having brushed those doubts aside I got my quill and paper out and started writing.

I wanted to tell you about how the “other halves” deal with their loved ones having diabetes and how we cope with the ups and downs, highs and lows and the general fun that comes along with diabetes care.

I met Tim for the first time in 2005 over a pint in a dark dingy pub in the centre of Edinburgh during the mad International Festival.  We drank, talked for hours and saw an Iranian comedian, which I think you’d agree is a great first date! Tim wasn’t diagnosed with Diabetes until December 9th 2005, in fact he didn’t have as many grey hairs back then either…Don’t know if that makes me a health hazard.

After feeling tired and lethargic for a month or two and having to take a week off work sick he decided to make a doctor’s appointment.  Thinking it was probably the stresses and strains of modern life, he wasn’t expecting to be whisked off to the hospital that night and meet the Professor at the Edinburgh Royal Infirmary.  I remember that fateful day when I went to pick him up from the ERI after I got his messages.  He looked lost, frightened and alone.  Being told that he had something that would be there for the rest of his life is not something that you can take in straight away.

I didn’t know a great deal about diabetes, but I had the opportunity to visit the Diabetic Specialist Nurse with him and ask as many questions I wanted, which was a great help to both of us.  I wanted to make sure Tim was not going through this steep learning curve and often bewildering time alone.  I have tried to be there for Tim to listen, support, help, assist and learn with him.  I am also kind of proud that I can  guess how many units he should put in of Humalog before a meal or snack.

I know having an ailment or illness in any form can be isolating and frustrating, thinking you are the only one going through the problems, having someone there to rant and rave to is hugely helpful.

As I said, I am lucky my pancreas works but I am also very optimistic by the progress being made with the technology for diabetes..   I have seen that if you are able to keep a tight rein on your diabetic care, the future is very positive.

When Tim asked if I would like to write an article for Shoot Up I have to admit I didn’t know if I was entitled to join the diabetic force, not having diabetes myself.

 

However, having brushed those doubts aside I got my quill and paper out and started writing.

 

I wanted to tell you about how the “other halves” deal with their loved ones having diabetes and how we cope with the ups and downs, highs and lows and the general fun that comes along with diabetes care.

 

I met Tim in 2005 over a pint in a dark dingy pub in the centre of Edinburgh during the mad International Festival.  We drank, talked for hours and saw an Iranian comedian, which I think you’d agree is a great first date!

Tim wasn’t diagnosed with Diabetes until December 9th 2005, in fact he didn’t have as many grey hairs back then either…Don’t know if that makes me a health hazard.

 

After feeling tired and lethargic for a month or two and having to take a week off work sick he decided to make a Drs appointment.  Thinking it was probably the stresses and strains of modern life he wasn’t expecting to be whisked off to the Hospital and meet with the Professor at the ERI.

I remember that fateful day when I went to pick him up from the Edinburgh Royal Infirmary after I got his messages.  He looked lost, frightened and alone.  Being told that he had something that would be there for the rest of his life is not something that you can take in straight away.

 

I didn’t know a great deal about diabetes, but I had the opportunity to visit the Diabetic Specialist Nurse with him and ask as many questions I wanted, which was a great help to both of us.  I wanted to make sure Tim was not going through this steep learning curve and often bewildering time alone.  I have tried to be there for Tim to listen, support, help, assist and learn with him.  I am also kind of proud that I can  guess how many units he should put in of Humalog before a meal or snack.

 

I know having an ailment or illness in any form can be isolating and frustrating, thinking you are the only one going through the problems, having someone there to rant and rave to is hugely helpful.

 

As I said I am lucky my pancreas works but I am also very optimistic by the progress being made with the technology for diabetes..   I have seen that if you are able to keep a tight rein on your diabetic care, the future is very positive.

 

 

 

More group therapy goodies

Group therapy at its finest.
Group therapy at its finest.

It seems to be the month for group therapy. Following my local Diabetes UK meeting a couple of weeks ago I spent a happy few hours last night in our local hospital. They run a coffee evening a couple of times a year for all those who’ve mastered the dark art of carb counting and insulin adjustment through their training programme, or who have a pump.

Put 15 pancreatically challenged types in a room with a nurse consultant and a pump specialist nurse and you can have a great little chat and catch up on the local gossip…

The hypo/pump/driving tightrope. It was interesting to hear the pump team say that they’re starting to see patients have to tread a fine line – previously when they were applying for pump funding, pancreatically challenged types would major on any hypo issues they were experiencing to help them meet the NICE criteria for pumps. But now, people are more wary of doing that, because if you report more than two major hypos in a year, the DVLA can review your suitability to drive . So they’re stuck between a rock and a hard place – the easiest way to get a pump is to be honest about any hypo issues, but in reality that can also leave you exposed to potential DVLA issues. This was exactly Dave’s comment recently.

Someone sees sense on pump insurance. It seems our local diabetes network have decided that they no longer require people to insure their own pumps, following guidance from Diabetes UK People with diabetes have reported being asked to insure their insulin pump themselves, despite the insulin pump being the property of the NHS. Diabetes UK believes this is an unfair burden that should not fall to the individual with diabetes and/or their carers. The NHS and pump suppliers should work towards resolution of this issue.” That’s nice for me because that was the approach I’d taken anyway. It’ll be interesting to see if teams across the country do the same.

Exercise. It’s always interesting to hear how other people deal with exercise because I find it can be a bit of a black art. The general consensus seems to be to reduce basal a few hours before, and reduce the bolus for any meal eaten up to an hour before exercise – for me, for an hour’s fast swimming I’d reduce my basal to 25%, 90mins before swimming, eat a light meal about an hour for and only bolus for about 40% of it.

For those with any serious interest in sport, www.runsweet.com  has some useful tips. My favourite from last night, which had never crossed my mind, was to do a short sharp burst of intense exercise at the start of a session to force the body to produce the exercise hormones that naturally raise blood sugar. This should help stop you dropping during the session. And consider doing the same at the end, to delay any post exercise blood sugar slump. It’s certainly worth a try.

Patients can be powerful.  It was good to hear the pump team talking about how genuinely valuable patient feedback is to them – it gives them ideas for what they need to be doing next and helps them to improve. But it also gives them ammunition – often when trying to improve services a well-informed patient voice can carry a great deal of weight in getting issues addressed – so far that’s proving to be the case with my eye clinic situation.

Quote of the night…Can someone tell Medtronic to speak English – my pump told me to check for an occlusion the other night and I had to look it up in the dictionary to find out what it was.” Now I come to think of it, it’s not a word that had ever entered my world before I started pumping. Surely calling it a blockage would be simpler.

 

Missed appointments

A Royal Infirmary, yesterday
A Royal Infirmary, yesterday

Last week, I missed my first ever diabetes-related appointment at my local hospital. Prior to this mishap I tutted angrily to myself when I read about people who were too lazy to bother turning up for appointments – wasting valuable medical staff’s time and costing the NHS. But now, sadly, I join the serried ranks of Bad People.

<rant>

In my defence, such as it is, the appointment was for an eye check-up during which they spend ten minutes taking a high-resolution (and surprisingly interesting) picture of the back of my eyes. The appointment is generally very quick and is usually included as part of my usual annual review up at the Royal Infirmary.

However, for some utterly inexplicable reason the eye check up is now done separately from everything else – the A1C, foot check and all that jazz that we know and love. This means more trips up to hospital each year.

If you are not familiar with Edinburgh (and you should be, it’s a lovely city), the Royal Infirmary is a newly-built hospital on the very outskirts of the city and is a complete and utter pain to get to. I usually take a morning off work to bus / taxi there for appointments and it costs both me and my employers time and money to get there.

Like a considerable number of Type Ones, I’m in full time professional employment and hold a responsible position acting for clients all around the world (no, really, I do); continually dropping everything and spending mornings up at the hospital is just not practical or sensible.

So which hair-brained dolt thought that it was a good idea to split the various care-functions into different appointments throughout the year? The moron who put this into place should be nailed into a barrel with two pissed-off starving jackals and rolled down a bloody steep hill.

We’re continually told that we shouldn’t let diabetes rule our lives and how we should allow diabetes to work around us. However, if our own health service is apparently conspiring to make life as difficult as possible for us pancreatically-challenged masses, then this will remain a hopeless pipe dream.

</rant>

If you’re reading this up at the ERI – sorry I missed my appointment.

Poll results – who’s your diabetes-related idol?

Poor JJR Macleod - no-one knew who he was
Poor JJR Macleod - no-one knew who he was

Weeeeeeeeeeelllll, it’s that time of month again when we crank up the supercomputer and calculate the results of the soaraway Shoot Up poll. Last month we asked who was your diabetes-related idol from a choice list of luminaries.

Top of the results by a country mile came “None of the above”. Which is a great, positive result giving a fantastic insight into the minds of the diabetes online community. Looking at the poll logs (which I maintain to ensure our polls are conducted in the most rigorous, scientific way possible. Honest.) it appears that skulduggery and multiple voting may have influenced this result. I’m not going to name names, but if you want to point fingers then point ’em directly at @stephen and @ckoei!

Anyway, rigging aside, good old Fred Banting came next – which is fair enough, given that without him we’d all be dead.

Sir Steve Redgrave came out in third place, which was nice; followed by HG Wells – sci-fi godfather, diabetic and co-founder of Diabetes UK. JJR Macleod came in next, scoring only one vote – probably because no one knew who he was (he ran the lab in which Banting worked and shared the Nobel Prize with him for the discovery of insulin).

In final place came Nick Jonas – whom Wikipedia tells me is an “American singer-songwriter, musician and actor best known as one of the Jonas Brothers”. I’ve no idea who he is and apparently neither did you. So there we are.

This month’s new poll has been suggested by regular reader and poll-rigger extraordinaire @ckoei, who asks “Why should the NHS pay for CGMS for diabetics?” In terms of answers you can pick from:

  • Prevent incapacitation through nephro/retinopathy
  • Improve general quality of day to day life
  • Save us having to finger prick so much
  • Shiny gadgets are cool
  • Just ’cause we’re worth it

So vote away – and try not to cheat too much this time!

Comatose and rotting toes – the lighter side of insulin dependency

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