Thursday, 28 January 2016

Bra shopping and Trainspotting

I've reached the stage in life where my brain is officially full.  Not with useful information or anything which could contribute to a long and happy career, of course.  Quite the contrary; I know nothing of politics, science or history, but ask me the theme tune to 'Captain Planet' circa 1991, or what PSSO means in knitting, and I truly come into my own.  The problem is, due to being full to the brim with theme tunes, lyrics to every Julie Andrews song and the detailed workings of how to make a strawberry smoothie (it's all in the yogurt), in order for new information to enter I have to go through what is officially (not even a little bit officially) called 'brain leakage'.

When I gave birth to the little three months ago, brain leakage of momentous scale took place.  Out went information like how to access my online banking, mathematics and the location of my car keys, and in came how to put on a nappy, the theme tune to Rasta Mouse, and who the hell Macca Pacca is.  As a result of this mass leakage, other key knowledge was lost - like why I had previously always packed spare infusion sets wherever I went.

The thing about people living with diabetes is that we are nothing if not resourceful.

It was shortly after lunch I ripped my cannula out today when a careless trouser waist-band re-adjustment manoeuvre took place.  I was an hour away from home spending a rare few hours with my best friend, buying bras to fit my post-baby body (see also: small refugee family could camp in the cups...).  I was desperate not to go home, but with an abundance of insulin in my possession and no way of administering it, I feared our day together might be coming to the most swift of ends.  Unsure of whether or not I would be successful, we hot-footed it to the local Boots, hoping that our foray into the world of well-fitting bras wasn't the end of our fun today, if we could only secure a hypodermic needle.

I explained my predicament to the pharmacist as she asked me questions about which kind of needle I would need.  Sadly that information was lost in the official (not official) Brain Leakage of 2013, when I got a new job. But between us we managed to establish that 'nothing fancy' would do.

"Would you like one of the drug user kits?" she asked, helpfully.

Slightly taken aback but glad there might be an option, I rummaged through the kits given out free to intravenous drug users in a bid to encourage safer and cleaner ways of using drugs, if they must.  With a veritable Pandora's box of thingameejigees, I eventually came across an individually wrapped  hypodermic needle.

"Perfect!",  I proclaimed as an examination of the needle showed a clear gauge on the side which I could use to draw up insulin to the correct amount.  Sheepishly (but gratefully) I tucked the kit away into my bag, hoping no-one with a knowledge of drug use might see me excitedly fumbling through the kit. 

Luckily, the lady in Boots saved my day, and my diabetes, a great deal of hassle.  On arriving home I was a happy 4.4 mmol, and pleased that I'd found a workaround for not having been prepared. But having learned today that carrying a spare cannula in my bag is absolutely vital, I only dread to think what else has now leaked out of my too-full brain... 

Wednesday, 25 November 2015

Everybody loves Frio!

If you have type 1 diabetes and need to keep insulin cool, then you will undoubtedly have heard of Frio.  When travelling New Zealand at the beginning of the year my Extra Large Frio case became my best friend for keeping my meds in happy holiday mode.

When Frio UK contacted me to ask me to take a look at some new products I was glad to because, frankly, I heart their products.

Here's what I thought!

Check out their shop here.

If you have any questions about their products feel free to drop me an email at

Sunday, 8 November 2015

Lazy Diabetesing / Survival Mode

Two weeks ago we, as a family, welcomed my little girl into our lives. Having seen my unwavering efforts to keep blood sugar hikes and spikes at bay during pregnancy, I was whole-heartedly congratulated on a job well done by my family members (aka, 'the help').  Inside, I congratulated myself too. It was a slog, but I did it.

Throughout pregnancy, my aim was to keep my diabetes as balanced as possible, without becoming a massive control freak and giving birth to one stressed-out neurotic little kiddo. But after 9 months with an HbA1c in the low 6s, healthy squishy bits and a full term pregnancy, it felt like the challenge (war?) had been won. Two weeks on, it has dawned on me that the challenge (war?) is only just starting. 

Immediately after she was born, I smugly looked at my CGM trend thinking how very much I had 'this'. My nice steady line with occasional above 10 mmol spike painted the picture of a mother absolutely nailing post-birth blood sugars. Two weeks on, and even my CGM trend arrow is trying to show me where I went wrong. 

My once 'never away from my side' receiver now shows a sorry trend of gaps and spikes. The gaps telling the story of it having been left in another room, far from anywhere conceivably useful. The spikes sharing its tale of alarms smothered into silence at the bottom of a nappy changing bag - often rummaged around in, but never for the CGM. The weathered tally gear case shows its age, and the precious upper and lower alarm limits set beautifully at 4 and 7.5mmol (target numbers for pregnancy) now stand at 4 and 13mmol, because I had to turn off the alarms which have been the electronic nag in my life since February 2015. The battery uncharged for the third time in this week. A sorry tale it tells. 

Am I lazy diabetesing? Well, no. Right now I'm adjusting to a new normal beyond anything I could have imagined. My kid is amazing, but in a world where only last night Jamie and I celebrated sleeping in the same bed for the first time in two weeks, there is no room for diabetes 'perfection', if there even is such a thing. If there is, it probably holidays with the 'compliant diabetic' and the 'optimal control' gang. 

Right now I'm living day-to-day, in survival mode. And while I thank my situation daily to be able to use a pump and CGM, right now, as I learn tricks of the trade for getting dressed AND having a shower in one day through a fog of sleep deprivation and survival naps, my diabetes has to just tick by on autopilot. My pump means I always have insulin when I leave the house, and my Dexcom is the safetynet of blood sugar mayhem. Anything in between 'way too high' and 'plummeting like fuck' is pretty much OK. 

The time will come when I have the headspace to basal test between breastfeeds, and prepare blood sugar friendly foods between vomitted-on outfit changes. For now, I'll stick with survival mode 

And on we must go. 

Sunday, 1 November 2015

Diabetes and Pregnancy: The End Game

Today is the first day of diabetes awareness month, centering around November 14th, World Diabetes Day.  As the days of the month turn over like pages of a book, social media fills up with information, opinion, blog posts, product launches and events.  For me, November has always been about educating, advocating, empowering and de-stigmatising a condition that affects millions around the world.  This year, it represents that little bit more because today, November 1st, 2015, my little girl turns one week old.

November this year represents both a new chapter in my life entitled 'motherhood', and a new chapter in my diabetes life of being a mother, with diabetes.  As I learn about the fun and foibles of being a mother - of breast-feeding and explosive nappies, of pram construction and bedtime routines (or total lack of them, if my little one week old is anything to go by) - I also now have to do so alongside learning how to manage my diabetes with this new beautiful person in my life - one who needs me to be on my game around the clock.  Learning how to prioritise when a hungry baby demands a feed after I've bolused for my dinner, or how to manage the blood sugar drops of breast-feeding or of remembering to check my blood sugars when my CGM alarms rather than treat the hypo it says I'm having because I'm just too tired from a bad night's sleep.  How will I treat a hypo when baby needs a feed?  And how will I keep my HbA1c from drifting as my focus is pulled in a direction other than my diabetes?  Time only will tell.

This year November and beyond is about learning how to do diabetes all over again.  It is about resilience and re-educating.  It is about finding balance, and about using the technology I have at my disposal to make diabetes a big enough priority in my life that the control and quality of life I enjoy so much aren't sacrificed, without leaving my child thinking diabetes is number one.  It isn't. But in many ways diabetes was easier to manage during pregnancy because it was all I had to do.  If my levels were wacky, a short walk could bring them down swiftly, and appointments were no issue to attend because it was just me to worry about.  Now, there is another person - one who cannot reason or wait -  whom I need to think about first.  

Pregnancy was without a doubt the most challenging period in the time I've had diabetes, made up of equal parts determination, joy, frustration and fear.  But the end result of careful planning, resilience and keeping my eye on the pot of gold at the end of the rainbow was a healthy baby girl, all 7 pounds 11 ounce of her.  Only this pot of gold isn't the stuff of myth, she is very much here.

Happy Diabetes Awareness month people.  Let's make this a good one!

Monday, 12 October 2015

Pregnancy and diabetes weeks 13 - 24: Trimester two

When I first fell pregnant it felt as though the magic 12-week mark, when we could more 'safely' announce to the world that we were expecting, was light-years away.  Managing my secret 'pregnancy diabetes' around colleagues and friends was tricky, but strangely exciting, like an affair with none of the sordid details.  By day I carried on in my job, exercise routine and social circle as usual.  By night I would sneak away to hospital appointments to discuss growing babies, bellies and basal rates. Bat-Anna and her new double life were in full swing.

But with the 12 week mark now upon us, we got to announce to the world that we two were to become three, and that the extra tummy 'pooch' (attractive, much?) and enormous(er) cahunas I was lugging around with me came with purpose.  We got to see our little growing bun, now less kidney-bean shaped and looking just like a little person, and were re-assured that we had passed the first round of testing for congenital birth defects.  At this point some of the many clinicians I was seeing would tell me I could stop taking my increased (5mg prescription strength) dose of folic acid.  Some however told me to carry on for a while, so I did, right until 20 weeks.

During the whole pregnancy the first three weeks of the second trimester on the sail into the unknown were the most easy-going.  Insulin sensitivity drifted off, giving a well-earned rest from the 45 minute hypos brought on by the final days of the first trimester, and now knowing there was a healthy kicking baby on board, life seemed to go back to normal.  My new normal, anyway. At about 12 weeks the placenta starts to function for itself, and the change in not only symptoms of pregnancy like spontaneous day-sleeping and ravenous carb-mania, but also the more predictable blood sugars, made for a veritable day off.

At the point we started to tell people was the first time I really started to feel pregnant, seeing as bat-shit crazy blood sugars are often all in a day's work for us D-champions, so even though I knew the hypo marathons were baby-related I had to repeatedly remind myself that's why.  But at week 15 the first flutters started to happen and my growing waistline and pride in becoming a parent was matched  only by the growing insulin resistance which started to hit me at around week 18.

By week 20 I was raising my insulin at certain times of day (between 2am and 5am) three to four times weekly, as my dawn phenomenon (when I am already most resistant to insulin) went into overdrive.  I would often have to notch up my overnight rates every 2-3 days, trying my best to leave a day in between to monitor my efforts.  FYI, if you can resist upping them daily you deserve a medal - one I will personally craft for you, but its worth it when you don't have to deal with monster hypos from over correction.  It was around this time that I truly saw the value of my Animas Vibe pump and Dexcom CGM into their own, because despite being 4.5 months pregnant not once had I had to wake my self up at night to try basal testing (the world's most futile during-pregnancy task) because my beloved Dexcom was all over that shit.  

Yayyyyy, my blood sugar today is perf.....oh. Ok
It was around this time of pregnancy that I also learned to make peace with the odd highs and lows. While traveling with my baby-daddy in New Zealand I had worn out the asphalt in many a campsite by walking at un-Godly hours through the guilt that a blood sugar of 12 or 13 mmol would give me in the pit of my stomach.  But the 20 week 'anomoly scan' had shown me that my body and overall
good control had so far given me a healthy, perfect baby, untouched by the blasted condition I carried around with me.  Some days I nailed blood sugars and insulin resistance, others I 'failed' miserably (or so I felt).  Some days were a bizarre mix of good and bad.  But every day was a day on the countdown.  I earned to tell myself that every day - be it good or bad - was a day I nailed.  And if I wasn't aware of my hard work paying off in the steady HbA1c and healthy scans I was pulling in, then the first true 'kicks' my kid gave me at 22 weeks, were all the sign I needed, because my kid clearly had something to say on the matter.

The second trimester was tough, in ways completely different to those in trimester one.  Instead of  being pro-active in my preparation for pregnancy, keeping secrets, dealing with insulin sensitivity and hoping to reach that 12 week mark safely, I had to learn how to be reactive, flexible, self-forgiving and most of all, to enjoy it.  Any time I needed a reminder of why I was trying so hard in my day-to-day life I just looked at those moving images of Baby McP, and any crappy day was forgiven.

I was now two thirds of the way through baking my bun and my daily mantra of 'test-change-review-repeat' felt a little like an annoying 2013 rave song, but kept me sane when the words 'routine' became a thing of the past, now replaced with 'constant change'.  The second tri certainly did a superb job of keeping me on my toes, but my new normal was somehow, working out just fine, one day at a time.

Friday, 21 August 2015

Pump failure: pregnancy panics and the cocoon of the DOC

It took me a good six months to trust the technology after switching from injections to insulin pump.  And at first there were a great deal of bumbling involuntary midnight cannula changes, kinky moments and at times I was sure my equipment was trying to kill me .  But slowly and surely as my HbA1cs came down, my hours of valuable sleep went up and my quality of life started to soar, it wasn't long before I would have made for the mountains beyond Rio if the NHS had tried to take my pump back.  It was mine: managed by me, and part of me.  

Fast forward five years and with the introduction of Continuous Glucose Monitoring (CGM) into my life and a growing baby in my belly, and the idea of coming off my technology, even briefly, gives me the shivers.  Granted, I dream of the day when I'm no longer tethered and catching my go-go gadget pancreas on door handles or unsuspecting strangers I stand a little too close to, but my choice to remain on a tubed pump indefinitely is based on five good years of a happier, healthier me.  And my choice to use an Animas Vibe which can integrate the Dexcom CGM I use, as well as being waterproof, is a decision I've never looked back on.  

But I still like to moan.  I am British, after all.  Diabetes, particularly during pregnancy, is extremely tiring.  There is no time to burn out because the kicking, wriggling bundle of joy in my belly means there is no taking my eye off my diabetes - well before and beyond the nine months that little hitch-hiker is mooching its free ride.

"I'm almost looking forward to the burnout after baby is born", I joked, bobbing around the swimming pool with my best friend of 22 years.  "I might even take a pump break.  I'm so tired of having to change the reservoir so often now that insulin resistance is in full swing." I said, not so jokingly.

Be careful what you wish for.

Three hours later and with a slightly watery reservoir change having taken place halfway though our spa day, my pump was making some pretty freaky noises.  The kind of noises a distress call from Wall-E might sound like if someone tampered with his electrics.  Noises which I instinctively knew would make for a long and worrisome night.

Driving home I un-hooked my pump, because the semi-permanent not-very-rhythmic vibrating it seemed to be favouring, teamed with the intermittent squawking gave me little faith that I wanted to be connected to a malfunctioning pump with a full reservoir of insulin.  As I reached my home I dashed inside and dialed the number for Animas, knowing that at 5:45pm it would be the support team over the pond in the states I needed to speak with.

While on hold I took a photo snapshot of my basals profiles (which thanks to insulin resistance are barely recognisable and certainly not memorable since the last trimester of pregnancy kicked in), just in case my pump died all together.  This was my best move that night, given that five minutes later while running some checks on the pump, the buttons gave up all together meaning the basal menu was firmly out of bounds. After a few checks and the inevitable diagnosis that my pump was kaput, and the Animas team had fired off an email to the UK office that I would need a replacement ASAP. Awesome.

But that was really the easy part.  Now I just needed - while 7 months pregnant and with diminshing leels of insulin in my system - to figure out how the hell to make the transition back to injections.  I had, of course, ordered in some spares of my pre-pump insulins Lantus and Lispro when I fell pregnant, knowing that this day may come, but remembering what the hell kind of pattern I was in, when to take the background insulin and how long it might take or that insulin to kick in, felt overwhelming. My last (unsuccessful) pump break had been 4 years earlier and had seen me back on my pump within 8 short hours, so my track record for this kind of manouevre was not good.  Ordinarily I would have just fumbled my way through, but with each swift kick to the inside of my abdomen, I was reminded why this would not be the ideal time to experience my first adult diabetes-related hospitalisation. It was not a time for 'winging it' or making mistakes.

I quickly took to social media as fast as my fingers could type, because having called my clinic a good two hours after they had closed their doors I'd found no-one there to speak to for advice, unsurprisingly.  It was then that I started to panic.  And it was then that the cocoon of the Diabetes Online Community came to life.

Within an hour of frantically typing out my garbled requests for advice I had friends from Devon offering me spare pumps and 'strangers' (whom I feel connected to in indescribable ways) wishing me well.    An hour after that diabetes nurses were offering me advice on what to watch out for and when to test.  An hour after that I was tweeting messages to one of the lead specialists at my home clinic.  An hour after that I was texting my very own consultant for help after a fellow blogger offered me their number, having read about my situation online.  And an hour after that I had administered the insulins I needed and was settling in for bed, feeling secure with the advice I'd received, and that the remaining CGM technology I had going strong would help me keep an eye on my levels overnight

I woke up 2-3 hourly during the night, and managed levels of 8-9mmol throughout.  Higher than I would have wanted, but acceptable considering the back-story.  The next morning the inevitable rise started as the Lantus still had to take effect (having learnt on SoMe that it can take up to a week to become truly stable!), and the two-hourly injections weren't quite keeping me where they should.  But, five hours into the day and after a desperate call to Animas were I firmly played the pregnancy 'card' (cheeky, yes.  Shameful, I don't really care...) and begged them to get the replacement to me that day, and my new pump had arrived. Thankfully, they did.  They probably heard from the wobble in my voice that of all days to go the extra mile, today would be one that truly counted to one very tired and frought person.

The next three days were a roller-coaster of results from the initial highs to the eventual too-much-insulin-sticking-around lows, but my pump was back on, and the baby playing bongos on my kidneys was telling me it was worth it.

Without the DOC I would have muddled through somehow.  But that was how I spent my childhood and teen years, before Social Media became a part of the arsenal I use to manage diabetes; I muddled through.  Since the DOC emerged, and at times like this, it helped me feel safe, secure, empowered and in my time of need, cocooned.  And for that it is worth its weight in gold.

Tuesday, 18 August 2015


Blood test measurements, and certainly my reactions to them, are loaded with emotion.  My results are just that - mine; personal, meaningful, emotive, and loaded with context.  And having someone I don't know look over them with a judging eye from their tower of objective reasoning makes those emotions rise up in me.  They shouldn't, because I know as well as the next person that any result I see is 'just a number' and that I should only ever treat them as a snapshot of information at that moment, at that time. But taking a step back is hard when your life is littered with words like 'balance', 'control, 'good' and 'bad'.
My 29 years with the condition have taught me that diabetes is one of the most complex science experiments in the world.  Why?  Because our experiment is happening in 'real life' and countless factors are constantly at play.  I know that how much sleep I have, what I ate for dinner last night and how hot or cold the weather is, for example, all play a role in impacting my blood sugars.   And pregnancy has opened up a pandora's box of reasons filed under 'other' which can affect my blood sugar control.  My usual diabetes pump team, who have spent 6 years working with me to help me achieve the level of control I am happy with know this, and are usually the ones reminding me not to concentrate too much on the results above or below where I would like them. They are the masters of patting me on the back and giving me some positive perspective. 
A few days ago I attended my first maternity diabetes clinic appointment.  Until now I've been attending usual maternity appointments with my wonderful midwife, and have seen my usual beloved pump team for the rest of my diabetes management every 2-3 weeks.  But now that I have reached the 25 week milestone in my pregnancy, my care is transferred down to what I call the 'warehouse'.  My hospital is a verylarge hospital on the South Coast of England, with an enormous amount of speciailist departments and thousands of women coming from across the county to manage their pregnancies and give birth to their children. Because of these numbers, it can come across as sheer pandemonium when the unit is full of large waddling ladies being hearded from scan department to generic health check areas.  Seeing the same person twice, other than the familiar faces of the diabetes team, is a rarity.
As I sat down in the specialist registrar's office having never met her before, and whipped out my weathered and paint-chipped blood glucose meter, placing it on her desk for her to see, I was fairly happy that I had been doing all I could to manage my diabetes during the notorious second trimester of pregnancy, when insulin resistance and reduction in mobility means my blood sugars have been a little more 'rollercoaster' than I would have liked.  
As she scrolled through my meter, her eyebrows raising intermittently as she let out little puzzled breaths, asking me what arrows meant and whether or not certain blood sugar results felt a certain way, I was getting little read on what she was thinking, but was starting to feel protective of the numbers she held in her hands.  I was starting to feel judged. 
"Are you aware of the targets in pregnancy?" she asked, not looking at me.
"Yes.  5.5mmol before a meal and 7.5mmol after." I replied, a little perturbed considering the 5.3mmol currently trending on my CGM.
"I often just use the meter at the extremes because my CGM tells me what I am doing the rest of the time." I said, trying to explain myself, my guard now firmly up. She looked at my bag where the CGM was poking out of the top, clearly in such regular use that packing it away in a zip-pocket was pointless.  I could tell she didn’t really understand what a CGM was.
As the questions rolled I clocked my husband shifting in his seat, also getting uncomfortable about the loaded questions from the stranger flicking through my numbers .  To add a little context, my baby is currently measuring in the 50th percentile for growth, meaning if you took 100 babies, mine would be perfectly smack bang in the middle for growth; not too big, not too small.  My A1c is still in the mid 6s even with the second trimester mayhem, and my CGM trace shows an 80% in target spectrum of blood sugars. The 'out of range' figures are also neither drastic, nor regular. Baby is kicking away hourly and I've been feeling amazing, diabetically speaking and otherwise.  I do not need to explain myself.
With a few more comments fired about being too low a little too often, and trying not to rebound from them, Jamie and I were shuffled back out of the office and seated back in the warehouse for our scan, a moment we'd been both excited and anxious about.  But now we were a little more focussed on whether I really was doing OK or not, considering the registrar had just carried out what felt like brain surgery on my last 2 week's results. 

I've come to learn that being subjective about people's responses to my numbers is not one of my strong points, and that I need to let certain things go.  But as we took our seats and exchanged knowing glances, Jamie managed to sum up how I felt in one word.
"Judged", he scoffed.
"It's not just me then", I replied, glad that my husband 'gets it' and was ready to jump to my defence given that he has seen first hand how hard a job pregnancy has been at times. I've tried to avoid being the over-sensitive pregnamonster, but picking apart remarks I take the wrong way because of beasty hormones, over ones with genuine carelessness or malice, can be tough. But seeing that Jamie has also picked up on the tone and the questioning made me feel better. Like I wasn't the crazy emotional one.
With that, we rolled the comments off our backs and chose to start focusing on seeing the baby again, and on celebrating the excellent blood pressure and clear urine analysis I'd already been told about that day.  But with my blood test meter now firmly back in my bag, locked away for my eyes only, I was reminded of the sharp sense of privacy-invasion that exposing my results for the 'panel' makes me feel.  Everything is under scrutiny when you are pregnant, and those whiley hormones have a habit of making you even more sensitive to anything which looks vaguely like criticism. The fact that in three months there won’t be a team of people ready to assess and evaluate my every blood sugar is an idea I grow more fond of each day.
Three months, and counting.