Friday, 29 May 2015

InPuT's virtual flash mob: The best kind of Sunday lunch get together

My passion for the work InPuT do is no secret.  Having witnessed first-hand the power of patients being given the knowledge, support and talking points needed to poke their consultants with a big technology-accessing stick, means I will always understand just how much they are needed in the diabetes landscape of the UK.  Just recently I had the pleasure of attending the Animas weekend and having spoken to several people trying - with limited success - to access technology which could improve their lives, I know just how much that need continues.

I've also seen first-hand how carefully InPuT spend the money they get. In a world where charities come under fire all too often for big business-like spending and abhorrent expense account-rinsing, InPuTs fresh and frugal attitude to spending is the antidote.  Encouraging the use public transport and relying heavily on the support of volunteers and part-time multi-skilled staff, their main aim is always to help people access appropriate diabetes medical technology.  And here's to not forgetting that they are the only charity in the UK doing this.

If everyone in the UK who uses an insulin pump donated just £1 a year, InPuT would have the money to continue their work in the UK.  If everyone who used some form of medical technology did so, they would be able to do even more.  So how can we give back to one of the lesser-known but truly needed charities? Well this Sunday we have the chance!

Rather than asking you to interrupt your usual basal dosing of money to the charities you support on a regular basis, InPuT's donation is just a quick bolus of support.  This Sunday, on the 151st day of the year (because NICE guidance TA 151 refers to the provision of access to pump technology, of course!), everybody is going to get 'together' for Sunday lunch, and in a virtual flash mob of support, will bolus just £5 to InPuT by texting 'INPU31 £5' to 70070.  



I've been 'pumping' now for 5 years, so this year I will bolus my £1 per year to InPuT as a tiny - but enormously appreciated - 'thank you' for the work they do.  Because I know how important it is that they have the funding they need.  So, I ask this:

Have you benefited from the work InPuT do?
Do you know someone desperate to access technology who InPuT could help?
Did you find out about InPuT after your own battle with accessing technology?
Do you want to help other people access a pump or CGM?
Do you want to be involved in a frankly fantastic event?
Could you spare just £5?

If you answered 'yes' to any of those questions, I will see you at lunch!

Sunday, 17 May 2015

Pregnancy: weeks 1 - 4

OK, so we didn't even find out we were having a baby until week 4 of pregnancy, when the hormone HCG was finally at high enough levels in my body to be detected on a pregnancy test but, we'd been planning starting a family for quite a while. And while it may not be time to add safety locks and baby-proof unit edging to all our furniture just yet, there were a number of things I learned can help along the early weeks of pregnancy nicely.

Considering 2 of the 40 weeks we are pregnant aren't even really pregnancy, there wasn't much of a change in anything in the first 4 weeks of pregnancy.  But I had been honing my basal patterns significantly and trying to convince my blood sugars - through diet, exercise and lots of deliberating over insulin dosages - to run a much smoother pattern over that 4 weeks.  You know, just in case.  I basal tested  to within and inch of my life, and re-read my already dog-eared copy of Gary Scheiner's Think Like a Pancreas, now defaced with scribbled notes in the margin and corners of the most important pages folded down.  His chapter on basal testing particularly helped me get much better patterns before we eventually did 'the baby dance'.  This also helped me nudge my recently rising HbA1c from a happy 7.4% to a 6.2% in the first weeks of pregnancy.  The general guidance is people with diabetes should aim to get it below 6.5%.  That may seem impossible, but it's funny how the motivation of a baby can help...

I also started to get back out there and use gentle low-intensity exercise like a stroll to nudge blood sugars down if they started creeping out of my comfort zone. Not only did this bring me down faster, but any gentle exercise is arguably good during pregnancy - although the advice I was given was not to start trying anything too intense if you didn't already do it.  Well...if it's doctor's orders... But by walking to the shop here and there after a meal, I managed in those early days to keep BGs generally under 10mmol after meals (180 mg/dl).

I also took a pre-natal vitamin and an increased (5 milligram - prescription strength) folic acid tablet daily for several months before we tried.  Whether or not the sales pitch of helping with conception is true, I will never know.  Perhaps we were just irritatingly lucky to fall first time.  Perhaps the daily vitamin had something to do with it.  But the folic acid is vital. Folic acid helps reduce the risk of birth defects and the good thing is any extra you don't need the body kicks out - so you don't need to worry about taking 'too much'.

Finally, I also learned that I had to stop freaking out about high blood sugar levels. I spent the first week after finding out we were expecting crying like a total lunatic every time my blood sugars rose too high. This wasn't fun, or necessary. You're partner doesn't want to be looking at you like you're a crazy person having just taken on the beautiful, but HUGE, news about his growing family. The only time high blood sugar levels are dangerous is for PROLONGED, UNTREATED highs. Just do your best to bring them down as soon as possible. And stop freaking out your partner.  Says the crazy lady who writes this blog, now much wrinklier and grey-haired than she was a few short weeks ago.

Weeks 1 - 4 of pregnancy really didn't bring anything more than I was already managing, and even the fabled tell-tale low blood sugars in early pregnancy didn't creep in until after this time.  But there are still 36 to go...who knows what else is around the corner.

Monday, 11 May 2015

D-Blog week: I can...

D-Blog week is the brainchild of Bittersweet Diabetes, and as it turns six years old. it provides another opportunity to hear from blogger voices across the world simultaneously.  I love that two people will see a completely different challenge from the same topic, and today's is sure to be a good 'un.  Today's topic is....I can...


When I was 12 years old I told someone who was asking me about diabetes, "Don't worry about me, there will be a cure in five years." I'd heard it spouted by Diabetes UK and blindly, fell for the line.  At the time very little was known about stem cells or even the causes of type 1, insulin pumps weren't yet routinely used in the UK, and CGM had yet to be invented.  Why I believed this wild claim with so very limited technological support for it ever happening, I will lay firmly at the feet of hope.  I hoped.  My God, I hoped.
 
By 22 that hope was all but lost, as I plunged into months of the worst burnout I have to this day experienced. My DSN, a fantastic woman called Sue Craddock, to whom I owe a great deal as she steered me back on track with careful words and constant support, referred to it as 're-diagnosis', due to the severity with which the reality of diabetes was smacking me in the gut.  "Please take me into hospital, I can't do this." I begged, after testing my blood and discovering I was 22 mmol before even having made it out of my pyjamas.  There was no cure.  It would never happen. It was lies.
 
By 32 another decade on and wiser, older, happily pregnant and still taming the diabetes beast as best I can, things have changed direction yet again.  Now, the technological advances and better understanding of the sheer complexity of diabetes has brought into the diabetes world a new term: Artificial Pancreas (AP).  While the AP isn't a 'cure' at all, if we're honest - it is a new ray of hope. The idea of a closed-loop system which could manage blood sugars on our behalf, and in most situations, is to me a dream come true.  I often ask when is 'good', good enough, because as a community we still hold on hope to stem cell research and islet transplantation, these were the hopes I'd clung to at 12, and those which had let me down by 22.  I still hope they will happen, but I don't let myself dream of days away from this life, quite the way I used to. 
 
But with the AP, tangible evidence is released almost daily in the form of human clinical trials, showing the literal steps which are taking place, bringing us ever closer to one of the most important technological breakthroughs since the discovery of insulin.  And at last, I can see a different future.  I can see that while a 'cure' might not be around the corner, if ever, there will be a time when I can sit with my friends from the diabetes community and enjoy a meal, day out or even just conversation, without our diabetes loudly interrupting our lives.
 
I can.

Friday, 8 May 2015

The newest chapter: a future not lived in fear

Just a few years ago I sat down with my then fiancĂ©, Jamie, and told him there was a good chance I might not be able to have children. It wasn't that I was unable. I was, and still am, completely sure that diabetes doesn't affect fertility per se, although complications undoubtedly play a role in decision-making. My inability was something quite different: it was fear. I was mentally and emotionally infertile through fear, and the idea of having a baby with diabetes was crippling. I had no reason to think I had any physical reason I might not start a family, but the many horror stories I'd heard about people with diabetes having babies left me unable to dare think about starting a family. It was a fear of the guilt if I wasn't able to manage my blood sugars during pregnancy. It was fear that once we'd started down the journey of parenthood, there was no going back and I allowed that fear to dictate my future. 

I sit here tonight writing this post in a place light-years from where I was then. Tonight, I sit here with a smile etched permanently into the curves of my face, ecstatic in the knowledge that my 13 week-old baby is growing - no, thriving - in my belly. 


How did I get here? From a place so convinced it was not an option for me? 

My new, wonderful normal, one not frozen by fear of diabetes, but in fact thriving with it,was because I found a community of people with diabetes, more fierce and powerful than any force I've come across, and that's what got me to this place. That, and the support of a husband who never once made becoming a parent a condition of our love.

I found a community of people who changed my fear, self-doubt and total lack of diabetes confidence, into a fierce desire to say 'eff you' to the journey that diabetes would bring. I found a community of people who said, "You can, and you will". They shared with me their stories of hope and made me realise that the fears I'd been holding on to by reading one too many horror stories were not just misguided, they were just plain wrong! 

Piece by piece the last 5 years of blogging have shown me, and my husband and father-to-be Jamie, that when it comes to having a baby we can, and we are. 

IThe next chapter - one with undertones of excitement, hope and still a healthy touch of ohgodhowthehelldoyouraiseakid? - is well and truly under way. 

It gives me such enormous pleasure to introduce you to, Baby Presswell. 


Saturday, 11 April 2015

Pregnancy: weeks 5-8 (boob-ache and bolus-mayhem)

By now if the constant boob-ache and total lethargy hadn't given me reason to suspect I was packin' a baby down there, the five pregnancy tests sealed the deal.  I was one of those horrendous secretly-thrilled people filed under 'lucky bastard' who didn't suffer any sickness (yet), but, before you virtually strike me in the blog-face or permanently unsubscribe from my posts, I have taken to spontaneous day-sleeping.

Spontaneous day-sleeping is a marvellous condition which makes it all but impossible to keep the pregnancy a secret, and works wonders for your relationship when every film we watch together ends in me snoring or falling asleep immediately after the opening credits. Sex, has all but gone into hynernation, because I'm asleep all the time, and there are laws against one-way loving. Jamie, is thrilled.

Diabetes-wise, these weeks weren't too crazy of a time after the first 4 weeks other than some pretty striking hypos which seemed to take 45 minutes or more to recover from. Having been away travelling there was still a whole heap of late-night campsite-tramping and wicked post-meal hypos needing lots of fruit-juice glugging. 

During these weeks you may well be going along to your maternity clinic for your first blood tests (these don't get any easier, even with a kiddo on board) and some information on how your care will take shape over the next few months.

Below are some of the things I noticed over these last few weeks.

~I've been religiously using gentle walks to budge down blood sugars when I know I have enough insulin on board but that my post-meal spike is going up just a little faster than I would like.  A quick 15 minute walk around the block once or twice is enough to bring me back into range, and the beauty of walking is that even when lethargy-face hits, it's not such a big ask to go walking for 15 minutes.

~On the plus side, carbs, which I was convinced had reached the end of their sweet life during pregnancy, are back in full force. With some cleverly timed bolusing, I've been enjoying meals with 70, 80 or even 90g carbs.

~ pregnancy gives you 'hunger-rage'. You'll know it when you see it, and you'll probably consider strangling any stray cows eating unattended in a field if hunger-rage strikes. Because you will be THAT hungry. 

~Blood tests still suck arse.

~For some reason my blood sugars have become increasingly more difficult to bring up after a hypo.  Initially I made the horrible mistake of treating hypos twice, because after 30 minutes I was still in the 3s at a stable pace. Be warned, treating twice is a false economy, because you'll most likely spike twice as hard and twice as fast when you recover. 

Careless Words: stock letters and diagnoses

Until three days ago I'd never heard of Diabetic Maculopathy.  I'd heard of Diabetic Retinopathy, having worked my backside off over the space of four years to keep my emerging retinopathy at bay by adopting life with an insulin pump, CGM, and lower GI diet.  But diabetic maculopathy was a term I'd never come across.  That was, before seeing it in the cold stock letter I now held in my shaking hand.  

"Your recent eye test showed evidence of diabetic maculopathy.  Diabetic maculopathy is a condition where there are changes to the blood vessels on the macula, the central part of the retina at the back of your eye."

It continued...


"It is important you attend this appointment to protect your eyesight.  The following can help reduce your risk of developing sight-threatening diabetic retinopathy in the future:


  • Aim to control your blood sugar levels as well as possible.
  • Make sure your blood pressure is monitored regularly
  • Go for regular diabetic checks."


After finishing my silent 'fuck you very much' head-rant about the control of my blood sugars (6.2% HbA1c), my blood pressure (102/60), and my regular diabetes appointments (minimum of 8 per year), I turned to  Dr. Google, having had no real explanation about what this letter - and new diagnosis - really meant.  My unsteady hands uncovered more and move information I could have lived a lifetime without knowing.  

I learned about the loss of central vision and inability to recognise faces. I read about injections to they eyeballs and about laser treatment ending in the loss of peripheral vision.  I imagined how this might all affect me. And I'm not ashamed to say that I wallowed in my post-diagnosis fog of confusion for several days.

Over the next three days I received that same letter three times, due to some kind of unwelcome admin error.

The fourth letter, from the specialist eye consultant within the actual eye department at the hospital I attend (as opposed to the community eye clinic where I have the eye tests done) told a somewhat different tale. 

"The retinal photography and OCT scans done when you were recently seen in the diabetic eye clinic showed there are changes related to your diabetes.  You do not need treatment at this time."

It continued...

"We will be sending you an appointment for repeat photographs and OCT scan in approximately three months."

This new letter made no mention of maculopathy, and gave no indication of any level of urgency to be seen.  Had I received only this letter, I would have been spared the many days - and two further letters - of worry and stress.  I would not have heard of the term maculopathy until a point at which I would have seen a professional face to face; a time when I can pose questions

As my good friend and shoulder-to-turn-to-after-that-letter, Laura, recently said, complications aren't just physical.  The psychological impact of being diagnosed with another condition, one which may impact your quality of life enormously, is not a dialogue appropriate for a stock letter.  The person selecting the drop-down options on my letter, while running through their daily work to-do list, probably had no idea of the impact it would have on me, or that the universal, impersonal stock letter using terms like 'sight-threatening' and 'treatment options' was a new and concerning diagnosis . They probably had no idea of the work, and money, I put into trying to manage this condition, and they probably have no idea that a driving license is key for my job, or that losing it could change the face of my career markedly.  They probably wouldn't know of my hopes that children may form part of my future, and that not recognising their faces, or that of my husband, is devastating to me.

The careless words used in the initial letter(sss...), which equated to a diagnosis of a sight-threatening condition, left a usually level-headed diabetic, perfectly familiar with complications in the past, in a significant amount of distress.  And yet, the follow-up information painted a somewhat different, less frightening picture.  I do still have some changes in my eyes; changes which need further assessment and monitoring.  But complications themselves I can live with, when I am armed with correct information and a feeling of control.  I have lived with retinopathy for years, and muclopathy is just a variation of this.  I can live with that.  I have always been the sort of person who responded best to knowledge about my condition, rather than threats of what may come. But I don't cope well when half-truths are delivered in such a careless and scare-mongering way.

My response to the NHS stock letter-gate is sealed and in the post. And normal life can resume.

Tuesday, 24 February 2015

The timing was perfect

Even though detailing life with diabetes through a blog can seem to the outside world as though I'm writing my very own Dear Deidre column, it's really about finding and connecting with others living with this sometimes bizarre way of life. Hard done by, I am not. 

The occasions when I do feel the 'woe is me' attitude creeping in are rare; usually somewhere in the midst of deepest burnt-out from managing a life-long chronic condition, when no amount of effort seems to land me on the right side of 'optimal' blood sugar range, and no amount of dedication seems to pay off. But a swift and forgiveable wallow in self-pity, subsequent kick up the rear-end and reminder that too long in full wallow mode is what will most likely lead to complications beyond emotional ones, and I'm back on track. 

The Wholemeal Cafe in Takaka, Golden Bay was our pit-stop on today's adventure down under, and the array of glorious-smelling cakes, tasty-looking treats and scrumptious-seeming drinks (think organic Wilky Wonka's warehouse) were beckoning. It was a delight to behold.

I'd already enjoyed three coffees that morning and having eaten lunch and being in a humid part of New Zealand's North Island, all I could dream of at that moment was a cool glass of something delicious.

I scoured the backs of bottles and grilled the server for carb counts, hoping to find just one I could sip on to quench my thirst. 

53g per serving.
35g per serving. 
28g per serving. 
47g per serving. 

Nothing. 

For one reason or another, mainly a slip of 1.5% in my last HbA1c, I've been trying to claw back something which looks like control. Although people with diabetes can eat anything they want (ask me if I'm allowed that; I dare you), there are times when I wholly feel that I shouldn't if I really want to see the results I look for. Insulin works in covering most foods well, but juices it does not. And I didn't want a post-drink spike ruining my day and rendering me useless through fatigue as my body tries to rid itself of the unecessary sugar floating around my blood stream. 

After five minutes of trying to find some kind of middle-ground, I sat at the table with my chilled tap-water, feeling very sorry for myself that guava-orange, apple-mango and black currant delight were not on the menu for me tonight. 

Begrudgingly I took out my CGM to check where I was at. 

Ta-da! 

As if by magic my diabetes decided to play ball, and my current blood sugar of 3.2mmol and falling meant any one of the juices on offer were mine for the taking, and the gentle fall meant I didn't need to gulp it down in a confused and sweaty mess. I could take my time with this.

My sparkling blood orange delight went down just perfectly. And in a moment unlike that of the Shawshank Redemption workers in the 'rooftop at sunset' scene, I had a little happy grin on my face treating this hypo. 

Anna 1, Diabetes 0.