Friday 29 November 2013

Coast to Coast with James: wiping the floor with 'respectable'

There are some people who are placed on this earth do extraordinary things.  They train, plan, focus and commit to sporting challenges that cause others to stand aghast, because the feats they accomplish seem impossible to many.  And then there are people who take those challenges, wipe the floor with them and set the bar well above 'incredible'.  I am not one of those people, but I know someone who is.

I met James Thurlow at the 2013 Animas Sports weekend.  A bright, easy-going person with the ability to make you feel instantly at ease, James and I got talking almost as soon as we arrived.  At the time he was using insulin pens to manage his condition but he was keen to start pumping asap because as the owner of Open Adventure, an adventure sports company, freedom and flexibility were key for him.  We talked pumps, CGM and how to choose which system was best for him for hours.  As the weekend drew to a close James even offered me his help and extensive mountaineering experience to 'climb a mountain', something I have wanted to do since my discovering my desire to lose weight and get active.  When I heard from James a week ago to tell me about a sporting challenge he'd undertaken with a group of friends I was excited for him, but I couldn't have expected what he was about to say.

Coast to Coast is a 192 mile unsignposted walking route from the Irish sea in the West, to the North Sea in the East.  It is a highly popular track with keen walkers and outdoor enthusiasts and a favourite notch on the belt for people who want to push themselves to new limits.  The route consists of 12-stages, typically taking people a leg-battering but respectable 10-12 days to complete.  This was the challenge James undertook, only with a massive, massive tweak: he completed it in just four days - one third of the time it takes even the most determined walkers.

James, supported by his team of friends and family, decided that unlike the usual approach of heading West to East he would go East to West, because James wanted to 'head home'; a motivating factor in the tougher stages no doubt.  

Wearing a Medtronic insulin pump (which he started using just 3 weeks before the challenge) and a Medtronic Enlite CGM, he battled hypos, weather and rugged British countryside to bring his challenge 'home'.

Did he make it?  Well, does James sound like the kind of guy who'd let a little thing like diabetes stop him?  

Check out James' incredible journey here:


Saturday 23 November 2013

Mastering the temporary basal rate

Temporary basals (TBR) have never been my strong point: it's what you'd call my 'development area'. I gained a little confidence in tweeking them for my needs at the Animas Sports weekend, which went a long way in helping me grasp the TBR reigns, but I am still clumsy, at best.

I now regularly use them for exercise and when I am ill and need an increased amount of insulin to keep me in range.  I sometimes do this successfully and sometimes blindingly badly, but I give it a shot. But there is another time that I have found them to be particularly useful; when warding off an unwelcome overnight blood glucose level drop. 

There are times when I go to bed and my continuous glucose monitor (CGM) trace shows that I am dropping, or that I have been dropping and am now teetering above 'low', but a little too close to it for comfort. At times like these in the past I would feed to raise my BGs just a little. A biscuit, a piece of toast or an apple would often suffice, but in all honesty 11pm isn't a time of night I particularly want to be snacking. That's not also considering how much weight might creep on in a year from several biscuits a week to curb a low blood sugar at night. So in recent weeks when I have seen a drop or a number I'm not too confident about leaving as it is, I've been experimenting with TBRs to restrict the amount of insulin going in, on a temporarily basis, therefore allowing my numbers to level out, or bump up just a touch. 

Last night was a great example of this. At just after midnight Jamie and I crawled into bed. I'd seen a spike after my badly calculated dinner and was all too aware of the insulin I had stacked one bolus on top of another trying to get it down. Finally it was coming down, but at this time of night? C'mon! 

I was 9.1mmol (164mg/do) and showing a downward arrow. Great.  I don't want to eat because 9.1mmol is a little on the high side anyway and I don't particularly want to go up overnight. But I'm also fairly sure the downward trend is going to continue, with just a little insulin on board still burning a hole in my CGM picture. I could ignore, which would no doubt end in a 2am hypo, or I could eat, which I don't really want to do. So I opted for secret option C: reducing my basal rate to 0% for 1.5 hours. It seems a long time to be getting no insulin for, but something seemed instinctively right about it. That's something I believe us PWDs (people with diabetes) have a lot of, instinct.

I awoke two hours later all of a sudden. I don't know why, but after accidentally punching my husband in the back of the head after a bad dream, I figured I must have been low. I turned over, clawed around for my Dexcom receiver and with bleary eyes, squinted at the screen. 

Well I'll be damned. I had nailed it, spot on. The downward trend had continued. It had continued for around two hours, having briefly danced with a 3.9 mmol around 30 minutes ago and was now heading back up, nice and safely within the very respectable 5mmol (90mg/dl) range. And back to sleep I went.

Basal rates are funny things. Something which can take days to fully adjust when you make any strategical changes can also impact your blood glucose within a matter of hours. In this case I hadn't needed to eat and was able to nod off to sleep with the use of a carefully timed basal reduction. 

Game. Set. Match. 

Tuesday 19 November 2013

Tis the season to get flu-jabbed...fa la la la la, la la la la.

I am a fan of the flu-jab and have it every year.  Since I started taking up the yearly offer of a free NHS inoculation I have never had another bout of flu.  And I don't mean 'the sniffles' flu, I mean flat-out unable to get out of bed, semi-conscious and unable to eat, couldn't look after myself or my diabetes if it happened again, kind of flu. I've only had it twice, but one of those occasions I can't remember at all; I have to be told how ill I was.  The other time I remember attempting to come down on Christmas morning and after 20 minutes of bumping into walls and unsuspecting family members, I keeled back into bed again.  I next woke up the following day, having totally missed Christmas. I don't fancy trying my hand at managing diabetes, cannula changes or carb-counting under those circumstances if I can avoid it.

People often passionately exclaim tell me they "don't believe in it" or "it's a waste of time", but the last people who told me that did so over the splutters and sniffs of a very nasty bout of flu that sent them to bed for 4 days and despite sharing a car journey and accommodation with them for several days, did not come my way.

For me, it simply removes some of the risk.  I am lucky that I have a Jamie in my life so risks of stealthy overnight hypos or Diabetic Ketoacidosis due to illness are lower, but to place the responsibility on him to look after me during those times is not necessary, if it can be avoided.  He isn't, nor should he have to be, responsible for looking after me if I fall ill, so if I can get a jab that will raise my chances of fighting any bugs off, is a no-brainer. It rates the same on my list as keeping a spare box of cannulas in my cupboard, or a spare needle in my blood testing kit.  It is just a safetynet.

So this morning I whipped to my GP surgery for my free jab and went on my merry way no less more than 6 minutes later.  Job done.

Do you get the jab?  Or are you in camp 'no'?

Sunday 17 November 2013

Sometimes you lose; sometimes you....lose

There are a handful of foods that I just can't win at. I've tried, believe me. But no matter what the approach (blousing before, after, midway through, split bolus, split bolus plus 200% basal for 8 hours...), those kinds of foods simply do not work for me.

This, is curry. The blood-sugar bashing not-so-superfood that makes my BGs go from 'hero to zero' in two hours or less. It will briefly allow me to think I've managed it by wafting in front of me a 6-7mmol BG for two hours and then BAM! I'm stroking the heels of 20mmol. 

But it's OK. Because this kind of meal is a once in a while kind of meal, and being able to bolus for it easy means it may feature a little too often for my waistline to handle. So for the meantime I will enjoy, correct, correct again and try not to let it ruin my otherwise delicious Eastern delight. 

What's your food nemesis, and do you still try to find a way to enjoy it? Do you still allow yourself it, or do you stay away to avoid the pitfalls of monster post meal spikes? 

Saturday 16 November 2013

Bloody Dexcom sensors: live or die?

Now and then I enjoy a little break from wearing my Dexcom sensor.  It takes commitment to wear a CGM 24/7 because even though it is a fantastic tool, with that and the insulin pump attached to my arm, I can look a little 'AI' at times.  It's a family joke that I am slowly replacing my organs with mechanical ones so that I can live forever as a machine while they wither and die, but realistically I can look a little experimental at times.  A few days off here or there, sometimes when things are going well and I rely on it less; sometimes as things head South and I need some 'alone time', can do the world of good.  There is no rule book (and even if there was, I probably wouldn't follow it).

"Ah, shit!"

Halfway through the insertion today I see a pool of blood collecting beneath the transmitter cradle.  It would seem counter-intuitive not to want blood on the sensor, seeing as it feels it should be reading my blood sugar levels, but it's not. The sensor shouldn't really be in contact with any blood, because it reads the glucose in the fluids in my tissue. And from what I've read in forums and support groups, blood on the sensor isn't always a good thing.  

"Please, please let it work, this cost me £50 and I'm on my last one!"

But I've done 'gorey' diabetes more than once, so maybe it'll be OK, right?   It'll be OK, these things are surprisingly tough.

Two hours later the alarm goes, it's time to enter my blood readings. Good news I guess, except that no matter how many times I enter it, I get this confused looking symbol:

A drop of blood and a timer.  

No matter how many times I enter a number, neither symbol disappears, and it doesn't wake up.  So I wait...and wait.

"Please... C'mon... Please..."

I leave it 15 minutes at a time, telling myself that after three hours I'll re-start the sensor giving it another try.  Perhaps the blood will dry.  Maybe if I shower it will wash away from underneath? 

Um, what now? That's new. I've not even seen this one before.  OK, well, 15 minutes it is.  See you in 15.

Fifteen minutes passes and my handset is still giving me all kinds of strange results.  The timer disappears and a 'tick' arrives, but as soon as I enter a new reading, the tick re-appears, as does the other drop of blood.  Meh.  It's pretty much a sure thing this sensor is on its way out, but the £50 note is burning a whole in my mind.  Maybe just 10 more minutes...

SHE'S ALIVE !!!!!!!

And man do I have some work to do to get the reigns shortened again.

Thursday 14 November 2013

World Diabetes Day 2013: Giving thanks.

It's that time of year when diabetes gets some extra air time as the media turn their attention to the our community: it is World Diabetes Day! It is a time for people affected by diabetes in some way to come together, make plans, educate, raise awareness and of course, dress ourselves, our buildings, our kids and even our pets, in blue!!

I was diagnosed in 1986, five years before World Diabetes Day - an opportunity to put the global spotlight on diabetes - was first introduced by the International Diabetes Federation. And dare I admit that until 4 years ago, I'd never heard of it.  Why?  Because I wasn't engaged; I didn't know the DOC even existed or that when they come together they become a powerhouse of motivation, dedication and fun! I didn't know about it, and I didn't know what I was missing.

Growing up with diabetes I didn't feel alone because my parents mastered the delicate balancing act between 'it plays a big role in our lives' and 'she's just going to be a kid, damnit'. I guess I felt unique in that I was the only person I knew who had the condition, but people didn't treat me any differently, something I am ever thankful for.  But  I knew there was an element missing: I knew I was looking for something, I just didn't know what that something was.  On the odd occasion that I ran into another diabetic it felt like meeting a long lost sibling in that we shared a connection that no-one else could understand. I would talk for hours with them, share my funniest hypo stories, my fears, my hopes, my aspirations.  I would share more with that person in 30 minutes than I would with many of my life-long friends in the whole time I'd known them.  We shared a connection: one that no-one else can completely understand.

My world opened up when I wrote my first blog post and almost instantly started spending my time speaking on a daily basis with other people in my line of 'work'.  I met a world of people, young and old, type 1 and 2, male and female, who reciprocated my very feelings on all things diabetes.  Some challenged the way I thought, some made me want to scream because I disagreed so wholly with them and others it was like meeting my reflection.  At last, I found my something missing.

We don't have Thanksgiving in Great Britain, but I always loved the idea of giving thanks for something.  So this Diabetes Day that's what I want to do; I want to give thanks for the community of people I've become acquainted with - no, connected to - in the past four years.  Thank you for holding me up when things get tough and thank you for enjoying the good times with me. Thank you for sharing my journey and thank you for letting me be part of yours. Thank you for inspiring me every day with your strength, resilience, ingenuity and creativity in dealing with this day-to-day. Thank you for encouraging me to take care of myself, because the longer I am here, the longer we all have to share a life.  Thank you for educating me and teaching me to expect more. And thank you for being my A-Z guide of how to deal with diabetes.

Thank you.

Friday 8 November 2013

Single-handed diabetes

I'm fiercely independent. I know this because after having had a minor carpal tunnel operation on my left hand, I am all but useless. Whether it's going to the ladies, writing a text message or dressing myself, all bets are off as to whether or not I will succeed or become infant-like in my ability to complete even the most basic tasks. Even this blog post is being written through the use of the voice activation on my smartphone. At least Siri finally has a purpose greater than me asking it to 'beam me up Scotty' or telling me how much wood a woodchuck would chuck if a woodchuck could chuck wood (I'm not kidding, look it up. Siri is a smart arse,). But while I have found savvy ways to make the rest of my life easier (and entertain myself while indisposed) when I have only one good hand and one bandage-wrapped club, diabetes has proven a little more difficult to do one handed. 

As I started to move around my home after the op and learned how to navigate my surroundings with only one good hand, I started thinking about how difficult diabetes might be to manage without the use of both hands. I had taken various steps to make life easier when I got back after the op, for example, changing my cannula a day early as I anticipated how tricky that would be without two hands. But as I absent-mindedly pulled up the pyjama bottoms I wanted to wear in order to make myself a little bit more comfortable,  I managed to catch my finger under the tubing and rip my cannula clean out. Shit! Changing my cannula was exactly the sort of task I was thinking about when I considered how difficult the next few days might be. 

I stood staring at the box of Sure-T cannulas in my diabetes supply drawer feeling very sceptical. After all, Sure-Ts are a manually inserted cannula meaning both hands are pretty vital. So the only thing for it was to revert back to my quickset cannulas - the ones with an automatic inserter - that I haven't used for quite some time thanks to the repeated kinking (ooh er!) issues I seem to have with  them.

As I fumbled my way through a one-handed cannula change, choosing this time to go for my left upper arm as my abdomen didn't seem to want to play ball with quickset cannulas last time I used them, I realised perhaps this was my body's way of telling me that it was time to use a new area. I talked in my last post about the mystery lump on my abdomen and my apparent apathy to do something about it, so maybe this was a good thing. One way or another my body found a way to push me into using a site I haven't been to for a while.  Being adaptable, open to change and prepared for all eventualities is something people with diabetes often have to face, so perhaps this is just another little twist on the winding road to diabetes successful management.  

See you next time, 

Love Anna 'club arm' Presswell 

Wednesday 6 November 2013

Rocks, bottoms and food-shaped shadows

As I stood on the scales this morning taking on board the eight pound telling off my scales were giving me for the choices I've been making recently, I realised something: I am losing control.  My diabetes management lately has not exactly been something to write home about.  I've been using my CGM as a disaster safety net, rather than the pre-emptive strike it can be.  I have a lump on my abdomen that I'm fairly sure is a nasty piece of scar tissue from overuse of that area for cannulas, but I have been too apathetic to stop using the area, let alone get it checked out by someone who knows more than Dr Google. The carbs I used to cut out because they led to bouts of mountainous blood sugar landscape are back with a vengeance, and my reaction to the peaks and troughs that inevitably follow is decidedly... meh.  Worst of all, the pounds I had lost in the last 18 months using the tools Animas gave a group of people at their sports weekend, are all but regained.  And I am too tired to care.

Burnout is back.

I don't generally talk about my issues with food widely because my 14 stone out-of-shape and old-before-its-time physique does that for me.  It's not exactly rocket science to know that I overeat and make poor choices. I've always known my relationship with food was... awkward... and I've known for many years that my choices can not only be bad, at their worst they are damaging.  It goes nowhere near the realms of anorexia or diabulimia, for that I am blessed.  But my battle to lose weight because of my inability to exercise self-control around food - far beyond that of any normal person - and my tendency to use food both as a comfort and a weapon, has become much more pronounced in recent weeks. I find myself so compelled to eat a certain type of food, that I will leave the house at ridiculous times of day and night to get whatever that food might be.  And I won't eat one of them; I eat four. I eat in secret sometimes and kick myself so hard when I do, because I am the only one I am fooling.

I know where it comes from. I remember times when I was a kid where I was so, so hungry, but my BGs weren't behaving themselves, so I had to wait.  And wait.  And wait.  My diabetic chocolate (before the world realised what a conspiracy that really is) was measured two squares at a time, and I had to go and run around outside for an hour if I wanted to eat them.  I could never just enjoy them for enjoyment's sake.  At other times my parents would need to feed my snacks and meals when I was half asleep, because yet again my blood sugars demanded so. I know how sorry they must have been and how sad this restriction must have made them.  I've had 'are you allowed that?' and 'you can't eat that!' so many times in my life that I use food as a channel dor my frustrations, my anger, my sadness and even  my successes. When I lose control, I LOSE control. And that's where I am now, and have been for several weeks: Out of control.

Diabetes stole from me a normal relationship with food.

But I'm not a silent partner in this and for the most part I am well aware of the issues I have, I see them and I can keep them at bay. At any time I am probably only one bad choice away from being on the evening news as firefighters take apart the side of my house to remove me by crane, but I can manage just enough self-control to stop myself most of the time. I know this, so I try to make efforts to fight the devil on my shoulder and go for option A, rather than sink to option B.

I know that something has to change if I'm going to raise myself out of the current funky state of affairs.  I get it.  I've been here before, and I will be here again.  That is the nature of managing a chronic illness that needs 24/7 attention. But with the changes that I plan to make will come better BG control; as a side of that I will feel interested again; on the back of that, the burnout will abate.  That's how it works, you see.

So how do I move forward?  We've done this before, right?

There are so many ways that years of teaching myself how to sock burnout in the mouth has shown me.  For starters, I have re-invigorated my refrigerator with mounds of delicious, healthy, low-carb foods, ones that I know help my BGs behave less like the adolescent faff-fest they've been lately.  I am writing what I am eating in my My Fitness Pal account so that I can see just how much 'a couple of cakes' really is, calorie, carb and conscience wise.  I have an agreement with my family members that every night after work, we go for a walk.  It's only a two mile loop around the village where I live, but it is a perfect 30-minute walk with hills and slopes to keep the heart rate chirping along. The pains in my legs are still lurking thanks to having regained some weight ('some', ha!), so for now walking is the best I can manage.  And I am going to go for some thorough basal testing to use the incredible CGM tool we made the commitment to buy this year.  Because using it as a safetynet while I put crisp packets in my face practically whole and three at a time, is ludicrous.

This is how I do it.  With determination, and with friends.  But it's not easy.  You know my 'secret' now, and you will know if you see me and can tell that I've gained some weight, that maybe now is a bad time.  But if you want to join me in hitting this diabetes shit out of the park, find me on My Fitness Pal at annamac1982.

Do you struggle with food yourself?  Then maybe see you there...