A Poem for Diabetes

For weeks Emily had not been herself

Thirsty and grouchy with her deteriorating health

Her shredded nappies and pee soaked bed

What could be the cause?  As we were scratching our head

 

Twenty Seventh of August, Two Thousand and Ten

A day like no other that we’d want again

The call at my desk I didn’t want to hear

‘Emily has Diabetes’, it was our worst fear

 

In the hospital, too young to understand

Showered with cuddles and a reassuring hand

Pump attached so big on one so small

But this was her lifesaver answering the call

 

No time to grieve, I had to stay strong

While Amy mourned about what had gone wrong

‘We’re to blame!  What did we do?’

But nobody explained.  This wasn’t you!

 

From night one I was there doing every test

I refused to sleep, how the nurses protest

This is our life I may as well start now

Such a massive change but we’ll manage somehow

 

Nearly 4 years later the differences are clear to see

So much support we’ve found on the #DOC

Diabetes can’t win against something so strong

The cure is just 10 years away right?  But I could be wrong 😉

 

She has her wobbles that break our heart

Hearing ‘I don’t want diabetes anymore daddy’ just for a start

So young, so brave, she’s endured so much

Her ambition is to help others, an amazing touch

 

Emily has never been one to mope

Our ray of sunshine when there seems no hope

She is the true star to come out of this

A cure for diabetes, her only wish.

What Happened During The London Marathon!

Hello again from me.

I wanted to update you all on Sunday as soon as I could but needed the ability of a keyboard to get it all down so sorry for a couple days delay.

Firstly Sunday was an amazing experience.  And hot, very hot.  I’m sitting here with everything still stinging from the neck up like I’d been buried up to my neck in sand & been left there.

The race did not go quite to plan, ok in truth it felt like the race was collapsing around me.   The first real disappointment was not being able to run with my hood up.  The glare of the sun through the limited visibility & the heat inside caused me to not want to pass out pre-race but also steamed my glasses up making it even harder to see!

So for the run, we had a plan, my job was to pace us through it.  This went well for the 1st 12KM’s, then the heat really hit me, stupidly I had decided to run in a base layer to prevent some chaffing.  Looking at my watch I could see my HR steadily rising to 185BPM & knew it had to go.

I feel sorry for the crowd, They went from cheering a relatively healthy looking Iron Man into seeing some bloke standing there topless with his middle aged spread for all to see as I lobbed my base layer across the railing.  Packing away my ample stomach & re-attaching my race number I then (And the irony was not lost on me at the time) managed to jab the safety pin straight into my finger causing it to bleed!  We pushed on in the knowledge I’d just cost us 2 minutes.

At 10 miles (16KM) we both agreed we needed a bathroom break.  To be honest I’d been needing one for about 10 miles!  They have you waiting on the start line for over an hour & you’re fuelled to run, by the time we started it had bypassed keeping us hydrated & sat directly in our bladders.  The queues were horrendous.  We stood & suffered for 10 minutes.  Our KM clocked at 17:22 with only 7:17 moving.  I was very aware we were dropping behind the plan now.

This stop did however give me the opportunity to undo my Velcro & see Twitter, I was blown away by the response from you all & it was a massively boost.  A huge thank you to Kev (@the5thdiabetic) for putting that out there to see.  And by this point I knew several of you were tracking us, no pressure then!

We hit Tower Bridge just before 13 miles, it is a sight that will stay with me as we turned the corner & it was there in front of us ready to cross, sadly at this point Amy was becoming a bit off a pain in the arse for the past mile!  (She’s not going to appreciate me saying that).  She was enjoying the crowd a little too much and getting a little ‘buzzed up’ as I would call it, completely breaking the strategy & trying to do her Usain Bolt impression, I had to keep shouting to slow down, enjoy this.  I can’t blame her, we both knew Emily was less than a mile away now.  We wanted to just get there.

Crossing Tower Bridge was my chance to get on the telly, I blew it!  I was trying to recollect which side Denise Lewis would stand in previous years.  And I got it wrong, by the time I noticed it was too late, I tried to veer across but was cut off by other runners.  Turning back would have only led to losing Amy too.

We passed halfway, everything felt fine, this bit was a bit cruel, a long gradual uphill section but we were in Charity Central, we passed so many but still could not see the JDRF support, then in the distance we saw the dark blue marker, as expected they were on the opposite side of the central reservation, for now we ran to the side & waved like crazy as they were waving their banner back at us.  We set off knowing we would be back with them in 9 long miles.

Just before mile 17 I felt a problem, particularly my right quad that had decided to cramp up badly.  Over 9 miles from the finish was not the place to do this.  I’d also taken on some Lucozade that really had not agreed with my digestive system.  The next 2 miles were tough but not because of the cramps.  It was because I knew I had to let Amy go.  I’d done my job, I’d gotten her over half way at a pace to make sure she’d finish ok (She has a history of struggling early on).  I really didn’t want to let her go, but I had to for the sake of her race.  In the end after some ‘discussion’ (Take that how you wish!) I basically stopped and forced her hand.  As she moved away I slowed further to make the distance grow & make sure she didn’t come back.

Now to sort myself.  And the real fun.  I stretched out only to pull my hamstring in the same leg, no I felt really buggered.  I got to mile 20 & some more toilets.  With the help of some runners who kindly unzipped me I was able to at least get over the Lucozade issue.  I left the port-a-loo’s behind.  Got someone to zip me back up and set off happily, just getting back up to pace I looked down to my Garmin to see I had started off reasonably then the moment of horror hit me….

WHERE THE HELL WAS MY GARMIN!!!!!

I stopped dead (Not a good idea 1. With any sort of lower limb cramp & 2. When thousands of people are directly behind you speeding past, try it on a motorway, you’ll see the carnage I caused).  How had I managed to lose my watch, then it hit me, I turned and ran upstream, straight back to the port-a-loo’s.  Which one did I use?  I had no idea.  I got in the rough area and jumped on every person leaving waving my arm like a deranged wiggly armed monster… ‘IS THERE A WATCH IN THERE?’ I was screaming.  I was close to prying open doors on unsuspecting runners.  I was getting desperate.  The a short blonde girl, she seemed about 4’10 came out looking confused (Well who wouldn’t with an overweight Iron Man lunging for her ‘Someone left a watch in there’ She said.

ME, ME, I DID…. I LOVE YOU!!!  If I had any strength left I would have picked her up & swung her round, luckily for her I didn’t but I did have my £250 Garmin watch back.  With all this excitement I’d forgotten this was still a race.  With a quick thank you & wishing her luck I was on my way again, I never even got her name!

The next 5KM I struggled with my other quad cramping up.  I also couldn’t take on any Lucozade now, I was relying on the general public and their sweet hand outs.  And how generous they were.  The rule was I could eat anything that didn’t need to be taken out a wrapper.  There were countless Jelly Babies, fruit pastels, Haribo starmix, Foam Eggs & most dangerous of all a mini packet of Jelly Beans (Pre-Opened).  As I inhaled this I just prayed for no aniseed flavour!  Dodged that bullet.  I was feeling fuelled.

I was at mile 20, 10K from the finish.  Was slowing, I needed a plan.  So I set off each KM walk 100M, Run 400M.  It worked. I was clawing back time.  I desperately wanted to still go under 6 hours (A target I’d been set to earn some extra fundraising).  I was gaining between 1-2 minutes a KM.  It was working.  I became comfortable, the mile markers were becoming more frequent.

race1

I hit mile 22.  Suddenly I doubted myself, was it mile 22 or 23 where I got to see Emily.   Was really hoping it was 22.  But when you’re that tired you start doubting yourself.  Then in the distance I saw them, I kept my pace & got to the railings to wild cheers, I grabbed Emily for a kiss and cuddle, did a few squats to ease the quads, grabbed another Jelly baby & off I went shouting for them to get to Amy at the finish.

Suddenly I realised I was going to make it.  The last few miles down Embankment became enjoyable.  I was cruising.  Sadly with the cramps still there I couldn’t go up the gears to really put some speed in.  With 600 metres to go I cruised past the man carrying a fridge, yes I felt proud to beat a man carrying a fridge!  Rounding the corner the finish was in sight.  I weaved up the straight passing a few runners and stopped my watch on 5:52:20 – Well inside 6 hours & only 6 minutes outside target.  After the eventfulness of the race I couldn’t be disappointed.

Strangely after the race I wasn’t hungry, probably something to do with eating the equivalent of 3 giant bags of jelly babies.  Instead I found Amy, met up with Emily and our support & headed for a well-deserved pint that was waiting for me.

race2

What I won’t miss from the run, 2 particular shouts from the crowd:

1)      You’re Iron Man, just fly the rest of it.

2)      Come on don’t walk, get running (while stood there drinking a pint).

Looking back on the race I have to say the crowds were amazing, I didn’t use my iPod at all, it was all them that kept it going.  I was proud to have done my bit for JDRF to raise funds for research so we can eradicate the complications of T1.

Thank you all for your messages I received during & after the marathon, they have helped make these past few days of aching limbs worth it.  And they really do hurt.  Not to mention nipples that want to bleed & blisters so large between my big toes that it now looks like I have webbed feet.

We will raise money again for JDRF again in the future, but for now which one of you guys are next to pick up the baton?

I will be doing a separate blog about JDRF & fundraising totals tomorrow.

Thank you for reading.

A letter To The DOC

Good Morning All,

If everything goes to plan this should post & be visible to you all just as the gun goes off to start today’s London Marathon.

What we are undertaking today is a minor feat in comparison to what each and every one of you face every day, be it caring for you own or somebody else’s diabetes.

Today is for you, each & every single one of you.  Without meeting you I would not be running London, this is a thank you for all the support when things weren’t going right, for when we felt alone and no-one understood.  For being there any time of day.  For introducing me to the most amazing people I’ve ever had the privilege to talk to.  For those who have encouraged our training, donated and kept me going especially when I didn’t seem possible.

Today we are running for you all, for a cure, or just the next innovation to living with diabetes that bit easier.  To give back something to people who have given us so much.  Today we run as superheroes but each and every one of you are mine.  This is our my way of thank you for everything you’ve done for our family over the past 18 months since we found the #Doc

It will be thoughts of you all that drive us on when my legs start feeling tired & I just want to stop.

A genuine thank you from the bottom of my heart to every single one of you I have met via Twitter, even if we have only spoken briefly so far.  You are my inspiration.

#LetsFindACure #DOC #OurD

The Other D

It’s me, I’m back & can’t quite believe it has been a month since my last post (I do apologise, a mixture of lack of inspiration & marathon training has had me side tracked).

I want to discuss something today that I can relate to & not through D for once but from my own experience.  Something that if I’m honest I thought I would not come across in such volume again.

I’m talking about depression & other mental health issues.

Mental health issues can affect anyone.  They are complex & a bit like Diabetes they need to be treated on a person to person basis.  There is no quick fix.  It takes over your life, can make you selfish, irrational & leave people not knowing how to approach you.

Chronic conditions & mental health seem to go hand in hand, and something I feel that is lacking support from HCP.  This goes for any chronic condition, not just diabetes.

In all the time of suffering from suffering from depression I have never discussed it.  So I will try not to ramble.  One thing I honestly believe is if you had suffered from any mental health condition you never beat it, It can lay dormant inside you but there are always triggers, a bad day, a life event, the smallest thing can set off you whole life’s history & send you into a downward spiral.

In my case the chronic condition I had was a back injury following a freak accident at work.  They are a debilitating injury.  I couldn’t breathe without it hurting let alone walk, or live a daily life.  I had surgery, nerve blocks, anything to try & fix it.  After 2 years I was told that it was now going to have to be treated as a chronic condition that could only involve pain management & not cured.   I was on so many pills I was rattling.  5 pills every morning (and that was only after months of finding a good combination) Morphine, Lodine, Tramadol, Lansoprazole, Amitriptyline.  They destroyed my life, numbing my body but destroying my mind.

I became a recluse.  I lost friends, I couldn’t socialise, couldn’t eat, couldn’t drink, could barely stay awake.  My head was taken over by the hatred of what I’d become, I hated my body for giving up on me.  I wanted to be normal again, to have my life back.  I was 20 years old & it felt like my life was done already.  This was no way to live.  Chronic illnesses make you feel like they are destroying your life & everything you have built around you.

I was sent for counselling, given assessments to see how I was doing, I hated them.  I was suicidal, I stood on a railway bridge while considering to end it all, there was also an overdose of alcohol, morphine & tramadol.  Looking back now I could not imagine doing it but I did, it was a very real.

I would break down without warning, rock in a chair, burst into tear in the middle of work & one point I was even found sitting under a stairwell in heavy snow in shirt & trousers.  Sometimes I just needed to get away, escape, nothing anyone could say made it better.

In the end I was so low in a downward spiral that I could see no other way out.  I hated my workplace, it reminded me of how it all happened.  I was instructed to leave my job by my councillor & move away from everything I knew.  Everything that reminded me of what I had before.

Sounds pretty extreme right?  I moved from Slough, Berkshire to Kettering, Northants & started a new life.  Still battling my demons but now without anyone familiar other than my then girlfriend.

Over the next 2 years I battled with changing my life.  Coming to terms with the hand I had been dealt and making the best of things.  But I wasn’t happy.  I was fighting, fighting myself to get out of bed every day.

So back to present day, and I see people on a daily battles either recalling their struggles or very openly laying bare their issues for all to see.  This is not for attention, this is for help, support & a sense of not being alone.

People who have not suffered with depression cannot understand the baggage that comes with it.  We don’t want pity, we want help.  We want fixing but no matter what anyone does you feel that they are judging you even when they only had the best intentions.  Mental health issues are all consuming.  You feel the whole world is on top of you & you cannot see a way of climbing back on top.

The care for those with mental health issues is complex but it also seems to be lacking in the current climate, more of a box ticking exercise than the immediate care people suffering need.

I feel a guilt when I read these messages of struggle & feel too awkward to send messages of support in reply.  I don’t want to seem I’m bothering into things with people I barely know.  I know how fragile the mind of people suffering is & don’t want to risk tipping them over the edge.

I have great admiration for organisations such as @HedgiePDiabetes offering words of support to people looking for help & guiding them in the right direction.  To people like @OceanTragic who has given up his own time to manage a Diabetes UK Support line.

This is something I want to do in the future, to help those wanting help.  It is a goal of Amy & I to form a support group locally as it seems to be lacking for both PWD & parents bringing up children with D.  We just need to get this marathon lark out the way so we can give it as much attention as it needs.

I fear for the future & how mental health may play a part in Emily’s life & I hope she can turn to us to help or fund support in others, by the time that comes round who know how this crazy world will have changed.

My 5 year battle was a rollercoaster & in that time I could not see an end in sight.  But I am fortunate to have fought my way to building a new life.  Is it still there?  Yes, buried deep in my head.  And I’m very aware it could test me again in the future.  But I have people around me now who will support me through the tough times to make sure I never sink so low again.  Now I want to help those from my experiences.

depression1

OurD Tweetchat & A Valuable Lesson

Me again,

I completely missed Tuesday’s OurD Tweetchat, Emily was having a 2.6 hypo & wanting all my attention, so I was MIA to even hear everybody else’s experiences.

I’d never have been able to answer questions on ‘Diabetes & Pharmacy’ in 140 characters.  Not a hope.  It was going to have its own blog post at some point anyway.  I will go into more detail below (mainly in question 3 where I’m bound to drift a small way off the topic.

Question 1 – Have you ever had a problem getting your prescription, anti-diabetic tablets or insulin?

I don’t think we’ve had no more than anyone else.  We actually have an online ordering service around here so we can place an order one evening & they will be dropped to our door.  We don’t have any direct contact with the local pharmacy any more.  The only issues we have is when having to get non-standard items, such as a quantity of ketones strips, or emergency pen supplies when they have expired.

We have had a couple of occasions recently when we have had to go purchase test strips due to failure to deliver however in their defence we really shouldn’t be allowing test strips to run as low as 48 hours supply remaining before re-ordering.

All in all they do a very professional job & make life easy for us.  They are always on the end of a phone late in the day if prescriptions have not been dropped off to let us know if/when they are going to arrive

Question 2 – If you have a regular repeat prescription, has your pharmacy team ever gone out of their way to help you if you had a problem?

We no longer actually deal face to face with the pharmacy (Boots in our case).  We live in a relatively small town and they are the only pharmacy.  For reasons explained below we rather fell out with our pharmacy.

Question 3 – When you (or your child) were diagnosed, were you given enough information about your medicine and BG testing? Has your pharmacy helped?

Here we go.  The fun bit.  It may go on a bit as this question as I say was going to get its own blog post.  There is no one person to blame, there are failings all the way through but the accumulation could have killed Emily.  So I best start at the beginning.

We are going back a couple of years now.  November 2011 to be precise.  Emily had woken up with a reasonable BG, low double figures, not uncommon.  I went to work.  Amy took over, noticing that the insulin was running low anyway she did a full set change & proceeded with the day, corrected, bolused breakfast and went on with the day.

2 hours later, BG was checked & she was even higher, high teens, this was odd.  No real signs of illness, air bubble maybe.  Again Amy corrected.  Emily snacked and went on with her morning.  Next test & we were in the mid 20s.  What was going on!?!  Ketones, 0.1.  So wasn’t her body was registering that Insulin was in her system.

One thing about Diabetes is it is very hard to deal with from your desk at work at times like this.  So I told her to correct again.  These doses were becoming quite hefty.  I was very concerned we were tempting a crash.

Emily had lunch, she was 3, you can’t stop a 3 year old wanting food.  Again it was bolused.  It got to about 1pm & Amy retested – HI.  Ketones 0.1.  This doesn’t make sense.  Again Amy corrected, Emily had now had a full days insulin in corrections alone.

I was becoming tetchy.  Amy wanted to know what was going on.  And the problem was hard to work out while we were separated.  I called our DSN, we didn’t get along (hence why we have now moved clinic, she always knew best or so she thought).  I had to get Amy to talk to her, I couldn’t answer the questions she needed to know, another hour passed, 90 mins, still HI on the pump, another correction.

Then the first error in a catalogue was uncovered.  Well in honest the first 2.  One was by our clinic at diagnosis.  It was possibly seen as non-important information to a family put directly on a pump but I’m telling you now, EVERY PARENT NEEDS THIS INFORMATION AT DIAGNOSIS!

Our DSN had Amy check the vial of Insulin from this morning, was anything different… It’s a bottle of clear liquid.  What is different, was it filled with Vodka?  There’s different insulin?  No-one has mentioned different types of insulin (This is much before the DOC for me, we had no contact with any other diabetics or knowledge of how MDI worked).

The label on the box was the same as always, however underneath the sticker put on by pharmacy once pealed was a purple box, not a blue one.  This is when the panic set in, and not only for us.  We barely knew what it meant but the DSN certainly did & she sounded for the 1st time in our experience worried.  You know what I mean, they take a breath and start talking very slowly and over calmly.  She wasn’t fooling anyone.  The very clear message was get her into hospital immediately.

So what had been discovered, Emily’s pump is filled with Apidra, and this stuff certainly Apidra, however she uses Apridra Glulisine, this was Apridra Glargine – More commonly known to everyone reading as Lantus & alike.  Emily was at this time on approx. 2 units of basal a day.  We had given her 12 units of the Glargine that day so far.

It had been a mis-pick at the pharmacy, and then incorrectly checked by the 2nd pharmacist.  Another poor practice was that the printed sticker was then wrapped around the box covering most of it (as you know these boxes are rather small and you could easily cover most of it).

Yes I admit we could have questioned the different colour box, but in all honesty we have all seen the packaging that our supplies come in change over the years, so it wasn’t a big surprise to see it in a different shade.

So Amy came & collected me from work en-route to the hospital, to this day this is still the only time I have had to use a pen.  I took Emily to the other room at work and battled to inject her with a correction of her fast acting insulin (on the advice of our DSN).  It isn’t something I would like to do often, I just hoped it had worked.  To be fair the last time I was shown how to inject was over a year before, the week after she was diagnosed during a crash course with our DSN.

Amy bombed it to the hospital.  When we arrived there was an entire team waiting for us.  Emily was a bit perplexed by it all.  She was feeling fine.  Amy went with Emily, I was pulled aside by our DSN, specialist & doctors and asked to relay everything from today.  Then the doctor said ‘so you’ve given her all her daily basal insulin?  2 units’… ‘No, her daily total insulin, 12 units, and I’ve just given 3 units via a pen’.

I have never seen someone who isn’t ill go so grey in front of my eyes.  Not really the reassuring smile I was looking for.

BG was taken, we had a figure again finally.  They had Emily in a bed, working out a plan of action, her pump was removed.  Something she really couldn’t understand.  I think she thought she was cured!  All we were told was that nothing would happen at the moment.  They expected things to really kick off in the small hours of the morning (what an ideal time for a BG crash).  It was only 4pm!  That’s a long time to hang around waiting for something bad to happen.

Over the next few we were given very limited information as to what Emily had been given, looking back now I understand but then it was very different.  All we understood was Emily needed blood readings every hour and that the insulin she’d had would keep dropping her blood for several hours afterwards.  It was all very vague.

I remember her being allowed to eat anything she wanted, and having no bolus to cover it.  The hospital had decided the best way ahead was to get her BG as high as possible.  And that we did, it was off the chart.  We had no idea just how high.  But it was better than being low.

Amy said her goodnights at 8pm, trying to hold herself together, she doesn’t do the overnight stays, that’s my area as previously mentioned.  Emily settled down for the night after watching a DVD and went to sleep.  Was a horrible time alone, curtain drawn, sitting in a dark, cold hospital chair.  The nurses were lovely as always.  I went into my auto-pilot, on the our every hour checking her levels.

Then it started 1am, we got our 1st reading that wasn’t HI, 2am, 3am, 4am, they went just dropping they were plummeting.  The nurses had provided everything required to deal with a hypo if the time came to it.  I just wanted to get to the morning & let Emily have breakfast.  I wanted to seriously avoid treatment to a screaming Emily in a ward full of sick children. For the 1st time she looked really sick from her diabetes.  Even at diagnosis she didn’t look this ill – Bless her

hospital nov 11

I was now on 30 minute BG checks.  By 5:30am she was 4.2, It couldn’t be left any longer.  I woke Emily & hoped for a happy child, and very unlike her she was  co-operative.  She WANTED food.  The nurses fetched toast & jam for her while every other child slept, sitting eating in the dark.

For the next 6 hours we battled with her BG, but not once did she hypo.  Things started to calm, her BG was holding steady rather than dropping.  At lunchtime the next day her pump was re-attached.

I then stubbornly & probably not correctly in some people’s eyes argued with the DSN that I never got on with.  Yes she knew more this time, but I was tired and not to be messed with.  I wanted to take Emily home.  She tried scare tactics saying she could crash at any time & it wasn’t safe, however I spoke to another DSN who said she will be fine & we could go.  In hindsight another 6 hours would have been a better plan of action but as mentioned I was tired & I really did have Emily’s best intentions at heart.  She was frustrated, bored and wanted to be home in familiar surroundings.

Everything else was uneventful & within 24 hours Emily was back to 100%, looking like nothing had happened.

24hrs

But the point remains serious failures from our Diabetes Team, the Pharmacy & ourselves.  This wasn’t the end of the matter.  The PCT (Now known as the CCG) had to be involved, Boots Pharmacy were investigated.  Insulin vials were taken as evidence & every member was interviewed along with us.

It dragged on a while, we were eventually visited by the PCT & made aware of the findings, Boots were hit with a big fine for the error.  New guidelines were announced for every Boots Pharmacy which meant Glulisine & Glargine no longer shared the same fridge.  In fact they’re meant to be nowhere near each other.  We received an apology from Boots & that for us was the end of the matter.

I would like to think we & Emily suffered that awful day so that no-one else would have to.  If the changes stop it happening in future then it was worth all the worry.

The failure remains that at diagnosis not enough information was available from our diabetes team about different types of insulin, in fact we’d never heard of Glulisine or Glargine until that day, just Aprida, which is something I feel still needs to be worked on in clinic.

So in answer to the original question – Clinic, No & Pharmacy, Yes

Question 4 – Most T1 and T2′s are expert patients, do you feel you know more than the Health care professional? Do you ever feel patronised?

Yes, this is why we left our old clinic, everything came from the big book of diabetes.  They were not willing to take the time to care.  It was only through the DOC that I realised just how inept they were.  Undoubtedly we know more than the HCP, we live this on a daily basis.  Each case is different and need to be treated as such.  I think as patients & carers we deserve a lot more respect for what we do.

Question 5 – Have you ever been offered any other lifestyle advice from your pharmacist, Eg – footcare, weight loss, minor ailments?

No, we have always been told Emily is too young to worry about these things.

Thank you for listening to me ramble far too much!

I AM IRON MAN!

Time for some shameless self promotion I feel.

Thank you all for your input into my costume idea for running the Virgin London Marathon.  The decision has been made, not sure it’ll take too much guessing what I’ve gone for from the title.  I do apologise for the confirmation below of the most out of shape Iron Man in history!

ironman

I’ve made recent struggles very clear on this blog regarding my plans to run the Virgin London Marathon for JDRF.  Emily’s overnight control had been very erratic, I had become very unwell & things were not looking great.  In fact on the 9th February I had written off my prep race that is on 2nd March.  However after writing things changed here.  Levels settled, overnight tests were not needed every night & slowly my body recharged own health improved.

I sat down & made my own plan and despite missing targets slightly I did manage my final 15K run on Saturday, so this Sunday I WILL be running my prep race (on just 2 weeks training instead of 12) around Silverstone.  13.1 miles/21KM.  Half way to London, half way to doing our bit towards finding a cure for T1.

If you can spare anything please donate @ www.justgiving.com/TeamHarris14/

And please share/RT this blog.

Thank You

Getting Social

I hold my hands up, I am very bad with social interaction in big groups, I don’t know why, I just always have been a little socially awkward.  This is why in part despite talking to the #DOC members on a regular basis why I’ve only ever been seen once on either an OurD or GBDOC tweetchat.  Even on Twitter I’m slightly socially inept, and this is with people who I know are awesome.  I attend, I’m just sitting in the background silently, reading my Tweetdeck like the creepy man in the corner.

So imagine my horror to be invited to a Diabetes Party by our clinic to meet other parents and children with T1.  Amy is no better.  So this was going to be an experience.  We all met at iKidz in Banbury & went in rather gingerly, Emily saw the climbing frames & was gone like a shot.

That left two rather awkward looking adults staring at a whole group of parent while we played guess who’s children have D.  We spotted a few straight away, you know what to look for – in men the beard is a giveaway, followed by the lack of sleep slouch.  The women look either Psychotic, eyes bulging from the excess caffeine or long drawn tired faces with hair that despite best attempts is at best a bit wild.  We’re easy to spot.

We chatted to our DSN and they pointed out and introduced us to a couple who looked as nervous as us & we proceeded to shuffle to a table to sit and observe.  I was comfortable again, I don’t mind observing.

Emily was introduced to another T1 girl called Ebony & spent the next hour playing with her.  For us it was important that Emily had this interaction, for the past week she has been going through the heart-wrenching ‘I don’t want Diabetes anymore’ stage again.  It’s been hard, you wish (as I’ve said before) that you could just take this away from them.  To tell then it’s going to be ok one day, but we just can’t.  She doesn’t want to be different, she wants to be like everyone else & yesterday for the 1st time she really was.  They were the gang.  The few other children in the play centre were the odd ones out.

Emily however was still slightly the odd one out.  They all went up for food.  Parents clambered round for finger pricks, a wide variety of meters appeared, fingers wiped & checks done, the food was served then out from every other parent came something very alien to us.  An insulin pen.  Emily was the only child on a pump.  I was as intrigued at the pens as the other adults were with the pump.

This is where we noticed our faux pas on Emily’s outfit.  She wanted to share her pump with everyone, in a flash her dress was above her head exposing her cannula, pump and bright pink knickers.  She didn’t care, she was centre of attention.

As mentioned by others recently there can seem to be a #TeamPump vs #TeamPen divide.  A very good piece was written here by @The5thDiabetic (hope you don’t mind).

http://the5thdiabetic.wordpress.com/2014/02/17/hang-on-who-said-your-way-is-better/

I am a believer in #TeamWhateverWorksForYou.  I would not push anyone towards pumping.  I would just offer advice as to what the pump has to offer.  Having never been on MDI I cannot compare the differences.  This in a way is good.  I can only offer our experience to having a pump.  It is then down to each case to decide what would be best for them.

Interestingly when speaking to another parent yesterday they actually turned down a pump for no other reason than no-one explained the functions of a pump to them.  We were then asked to talk to someone who is very interested to move over to a pump.  She had a 2 ½ year old daughter who hated being injected.  It was all very brief due to the pump batteries dying and her being short of time.  I worked as matchmaker, her & Amy exchanged numbers, they are local.  We will meet up to demo in the next couple of weeks.  I didn’t want to rush everything, choosing a path of treatment is one of the most important things you can do.

I contacted our DSN this morning thanking them for yesterday & also said to pass on our details to any other parents who want to discuss pump life.  All seemed to have little to no knowledge of them, not because they didn’t want to know, but they didn’t know where to look.

I am going to pass links to #DOC member blogs to hopefully put in the next clinic newsletter, in the hope that they can find answers for questions they want & who knows even find the mad bunch on the #DOC and add to the ever increasing numbers.

If you wish to suggest any blog in particular please leave a comment below.