Burnout

Today I have come face to face with the inevitable.  With Emily running high for the past week it has led to more testing, especially through the night (her correction ratio doesn’t quite fit at the moment so it’s taking 2 corrections at least to hit the mark).  And suddenly it hit me like a walking in front of a truck.  Burnout.  At the worst possible time.

I was laid in bed watching TV, glancing down at my phone, 10:55pm (early in my world) just 5 minutes until the next BG reading.  Emily had pulled a fantastic 21.0 at 9pm that made me crumple on the spot.  Despite knowing how crucial this next reading was and being just 5 minutes shy of testing my body had other ideas.  I was gone.

Alarms pre-set at 01:00, 01:02 & 01:30 were useless.  I was not waking up.  I push the boundaries of my sleep to the extremes.  I’m never asleep before midnight, generally I’ll go to bed between 1 & 2am to make sure Emily has no more than 5 hours without a test.

Despite missing the alarms I do wake up to a degree, try to rise out of bed but whatever I want to do my brain doesn’t.  I manage to grumble a barely audible comment to my wife who confirms she has picked up the mantle for the evening and she was now 22.0.  Even worse.  Again I slip back into my slumber unintentionally.  At this point I’d want to be up, waiting for the next test, making sure ketones were checked too.  Are there bubbles in the line?  Every possible reason for these ridiculous readings.

It’s now 4:55am, I glance down at my phone that is still in the bed clinging to it’s last ounce of battery.  I try to get up again to check Emily, the only way I can describe my attempts is watching a fish flap about when it’s out the water.  The rocking wakes my wife who say a number that sounds better.  I manage to roll out of bed, plug my phone in and fall back into bed for another 90 minutes.

I wake up feeling guilt like I’ve let Emily down, she cannot do this, it is my job and I failed.  What if my wife hadn’t have woken up and taken over.  How ill could she have been today?  What if something really bad happened?  I continue to beat myself up over the what ifs?  Next time we may not be so lucky.  I spend the morning apologising which she says I don’t need to but I just hate this when it happens.

It’s now 10am, and this blog is the most productive thing I’ve done today.  The cogs still are not turning.  I find myself opening my eyes and seeing my monitor and cork board above my work desk.  I have the classic look of a parent dealing with diabetes.  I lack the energy to feign a smile, or act interested at menial conversations, my face gives me away even hidden under a 2 week old beard.  I think we chalk today as a loss, coast through with my hood up and a headphone in.  5pm will be here soon then my real job of managing diabetes starts again!

Have a good weekend all!

GBDOC Tweetchat 29/01/2014

This week has been one of those I would rather forget for many reasons.  It has left me very unmotivated towards anything that isn’t D related.  This does not bode well as I have my prep race for the London Marathon in just over 4 weeks and I haven’t trained yet.

My own GP has removed my life source of caffeine due to high blood pressure and heart rate so my brain feeling quite like an engine running out of petrol!

It also means I missed the GBDOC Tweetchat last night, one I really wanted to get involved with so i’ve decided to share my views on what I would have like to contribute:

gbdoc1

I think demanding can be viewed many ways by different sides.  To me I am not demanding when I ask for the best possible care and course of treatment for Emily however have found I need to be proactive with this because our HCP is not the kind to offer up help.  So to them I may seem quite demanding but to me I am only getting what I think they should be providing.

gbdoc2

Demanding more would for me mean more time given towards us before appointments, I get infuriated when they download pump data and within 3 minutes can analyse everything.  Sorry but this takes a long time.  Not just a fleeting glance.  I would prefer we sent the data in 48 hours before an appointment so they can properly look at the numbers and advise us where they feel things need changing.

That being said I do send data between appointments to explain changes, and tweaks I’ve made.  Only to now realise they do not even take notice of it.  In fact the advice given was something I had already advised them I’d done a week before.

I always get the overwhelming feel that they just do not have the time to spend an hour looking at a patient’s data.  Maybe this is the way things are with public sector cuts but as a tax payer who works 50hrs a week a feel getting the proper care is the least we deserve.

My 2nd demand would be everyone’s probably.  More funds for CGM monitors.  It is something that would make dealing with a condition that none of us asked for a lot easier.  It should be seen as a requirement not a luxury.  If they looked at the big picture they would cost a lot less than funding test strips/lancets immediately as well as the long term cost of complications that may need treating from poor care in the future.

gbdoc3

I feel the only way can prove you we deserve the best treatments is to be the best as we can be in caring for D on a daily basis.  If I can’t take the time to look at the data, carb count and try to keep sugars good then why should I be rewarded with better care.

This is why I feel we can be ‘pushy parents’.  I will do night tests 6/7 nights a week at 12am & 2am (more if required).  We will suggest, tweak and maintain our basal rates on our own outside of each clinic.  We want the best possible life for Emily, to embrace her diabetes as she grows up, so if we can make it as painless an experience as possible we will.

gbdoc4

Easiest answer of them all, the best place to learn about diabetes is with the #doc.  They have taught me and supported me more than any DSN or HCP.  When I need help this is where I turn to, not the hospital.  It is an amazing place to discover.  I couldn’t live without you guys!

I Wish It Were Me

I feel I need to be very careful how I word this as to not offend the many diabetic I talk to on a regular basis, so please bare with me.  Hence why at this moment in time I can’t even think how to name this post.

I have the utmost respect for anyone who lives their lives affected by diabetes.  It is something anyone outside this bubble we live in cannot comprehend.  But to diabetics it is a way of life.  Yes sometimes it’s a pain in the arse, but you get on with it.

As a parent of a child with type 1 it feels as if you have diabetes yourself.  You live it, every day.  I am fascinated (if that’s the right word) by the things I can’t experience.  Emily (for some reason i’m not sure of) does not like discussing hypos beyond warning us with the ‘i feel poorly’ line.  The hardest part of caring for someone with diabetes is not having the awareness to feel a hypo coming or the unwanted highs.  By the time we know it is all about reacting to the situation.  And we are relying on Emily letting us know she’s low when she is, not waiting to the end of her favourite programme then telling us.  Being 5 she doesn’t always understand the importance of a quick reaction.

This explains the title now I guess, I wish it were me.  When there are 2 sides that need to come together to manage diabetes it always feels so much harder than if I were fighting with the dreaded D demons myself.  Diabetes is one of the only things I can think of that instead of feeling stronger as a team makes you feel like it does nothing but exploit every weakness that it can find.

This is why we would love a CGM as part of our treatment while we have this flying blind feeling, if we got it wrong we have to wait until she tells us.  What if one day we got it too wrong.  It’s this worry that has turned me into a number crunching, over protective, over testing insomniac.  I do not have the ability to trust the simplest of things.  I’ll need to get up and test every night.  Even if I know the basal/correction was right, i’ll have Emily popping up in the middle of my dream asking for me to do her finger now.  These dreams have been coming more & more frequent.

When I do get to a stage where I’m confident we have her safe overnight something happens to remind us how dangerous D can be.  Last night I got up at 3:50am, did a check, all seemed good.  BG had dropped slightly from 6.3 @ 00:45 to 5.0 (not unexpected due to a couple of corrections given late evening.  So to have Emily hitting me at 4:50am insisting she’s poorly was a surprise, especially as she had never in the past 3+ years woken us to say she was poorly.  I checked, 6.9, she wasn’t having it, I tried another finger.  Bingo! 2.5.

So again for the next week i’ll be too worried to go to bed and testing every couple of hours, maybe some hourly basal testing too.  The level of my obsession with getting it right just intensifies.  That’s exactly what diabetes has become, an obsession.

So i’ve said it, I wish it were me, I have always wanted it to be me like any parent would.  But as the years have passed it’s not as it once was to take this away from her but now also to save my own sanity.  I don’t wish diabetes on me because I feel it is easy to look after yourself, but i feel like I have it already, it’s more a wish to upgrade my living with diabetes so I get all the information in my own body.

She’s a little hero to me, as are all diabetic & parents of those caring for diabetic, I just do not want to let her down when I get it wrong.  So i guess the obsession will continue.

Part of the Community

Well it’s nearly 2:30am which is pretty standard for this household.  For as long as I can remember now we have had some issue or another causing the 2am test requirement.  No matter what changes are made.

I’m going to wake up for work again at 6:30am feeling exhausted & following my usual routine, it’s now auto-pilot, a bit of a power saving mode while everything wakes up gradually.  And every day the same thing, BG reading, liaise with Amy in the kitchen about what to do when up then off to work @ 7am.

First job – log onto Twitter & see what I’ve missed in the past few hours.  The Diabetic Online Community (#doc) is a powerful thing.  Without even realising it, it has changed everything about how we deal with diabetes on a daily basis.

It’s given support, advice unlike anything we have been offered by DSN or HCP.  It has made us see everything in a new light, even made us realise how bad the care we had was and moving hospitals.  But more than that, it’s a friendly hello, good morning and generally how are you.

When everything seems to be crashing around me it’s appreciated more than you’d know, it’s amazing how you guys and gals have kept me sane in under 140 characters by take a moment out your day to just say Hi, so thank you, all of you.  You are all amazing people.

An Introduction

Hello & Welcome,

This is a brief introduction about me, my family & our experiences with coping with diabetes on a daily basis.

We have been living with D for nearly 3 and a half years now, my daughter Emily was diagnosed a week before her 2nd birthday back in August 2010.  She was very fortunate to be given a pump on the day of diagnosis.  Something we took for granted as we knew no different at the time.

I am Mark, 31 & best described as a little OCD.  Let me tell you something, if you want to make someone really OCD then just give them a diabetic child to care for.  This is the reason that I always feel like the last member of the #doc awake every night.

Emily is now 5 going on 15, she’s a healthy (minus the sleepy pancreas), active & opinionated child.  I wouldn’t have her any other way.  She has that youthful innocence that means she can get away with anything.

And then there’s Emily’s mum, Amy.  she has the most important role, she keeps me fed so I can survive on 4 hours sleep a night.

So why have I decided to start this blog?  Two reasons, my own sanity, i’m probably going to rant, moan and get a lot off my chest during those moments when D just makes you to want to scream.  But then there’s my 2nd reason.

When Emily was diagnosed there was no #doc, #OurD.  No community when you were feeling alone.  We were given no advice on charities, support groups & it was a scary, lonely time.  This blog is for all those people who felt like I did, to find a little hope when everything has got a little crap.  I found the online community on Twitter a year ago almost to the day.  We had been living with D for well over 2 years with no other interaction other than our clinic.  I would not want any other parent or newly diagnosed T1 to feel like that

Knowledge is Power

Thanks for reading 🙂