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Type1 Double Dose, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 3

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I met Lucy and her family about a year ago, at an event organised by the local (South Hampshire area) families support group, Seahawks. We’ve spoken quite a bit, through highs, through lows and one day I offered her the chance to tell her story.
Have you already read part 1, Night-crawler to Day-walker or part 2, Night-crawler to Nightscouter?
Here’s part three of a three part story.

15045327_10154718440976913_1948820034_o
Paige and me enjoying a coffee soon after diagnosis

A BIG THANK YOU

When Sienna first got diagnosed all our family and friends grouped together and helped us gain our new normal, living life just a bit differently. Friends arranging their working lives, arranging their own children’s bedrooms to accommodate our three children, to arrange the washing of their school clothes for the next day at school all whilst Sienna’s close family gathered around and had their own training on T1.

Our friends joked saying it was like a play group with all the children playing together, but that they were all well behaved. I think our heads were obviously not in the right place to remember to thank everyone for their own efforts. We really do have some amazing and very loving friends, they really have stood by our sides through the worst and have shared some awesome highs. So to all the people that have stood by, watched over us, helped out in anyway and have taken the time to learn and ask about T1 we really are truly thankful to them.
Eighteen months on and now with Nightscout and Dexcom in tow we have taken our normal and smashed it. We have found caring for Sienna less stressful, don’t get me wrong for us we still work hard on her D everyday it’s just a little bit easier and her HbA1c is now at a health 7.5.

A big sister’s knowledge

It’s a Friday night sleep over for Paige with a friend having sweets, treats and films. I had the girls in one room with mattresses on the floor and as we do every night we go up and check Sienna’s levels.
Paige’s friend is a lovely sweet girl with a heart of gold was very inquisitive that evening asking if Sienna’s finger clicker hurt her and would it hurt her. With that I wound the needle around and down then offered it to her “you can try it if you want” she shied away and said she couldn’t do it, with that Paige nicked it off her and said “here I’ll show you how to do it”.
This girl from day one has amazed me with her knowledge of T1 and taken a keen interest in caring for Sienna as a big sister. She knew how to click her sisters finger and get the reading as well as carb count and enter the carbs in her meter. She knew the diabetes book like the back of her hand and got involved in doing a 2 minute discussion at school talking about and spreading the word on type 1 for a competition. Such a chatterbox I think she said she talked for six minutes, I giggled when she told me. Massive well done.

(Off track slightly but who’s not going to big up their child at any given minute especially at a time like this.)

That sinking feeling

Paige clicked her finger and read out that her bloods were 31.6mmol.
31.6mmol!
31point6She shocked herself so I went on to say that because she had been eating sweets that she must go was her hands. Right at that moment my heart sank slightly and every part of me right there so desperately wanted the next reading to be a hell of a lot lower. Some part of me was trying to justify such a high reading, maybe she had way too much to eat.
I asked them what they had had.
They had shared one small packet of jellies and half packet of toffee popcorn so there was no way in hell it should have been that high. I love candy floss and have eaten a whole packet (Obviously, I’m not sharing that, so I’m going to eat the whole bag) and could probably eat a lot more and still my sugars wouldn’t be that high after.
She came back after washing her hand and said to her friend that sugar on her hands would give a false reading. My heart melting again because she has just retained so much information but I knew deep down that our journey would start again only this time Paige had a very unwanted friend onboard.

Heart in my mouth

Again she clicked and with my heart in my mouth I prayed and hoped to God.
Please, please don’t let it be higher I said to myself. The meter beeped and read HI.
My heart skipped numerous beats and inside I sank.
We all remember the first time we went through a diagnosis! Yep, that feeling. Paige’s face dropped but she looked to me and basically wanted reassurance that maybe she didn’t wash her hands properly. “Yes definitely and No I’m not worried” I said. Going to see her dad I explained the situation. He said exactly what had whizzed in and out of my mind in seconds before and that was maybe she had eaten too much too quick. The realisation of that statement meant that he was trying to justify to the reason why, Love this man to bits but this time I was not a paranoid mum. I quickly got online and told my T1 family about the situation and asked for guidance.
Thank you for all the replies back offering help. Within seconds twenty or so responses came back saying to go with her and wash her hands and to click a toe and reassured me that I should take her straight to hospital, to check ketones and to give plenty to drink etc.
Paige had been weeing a lot that evening not that I noticed as she’s old enough to take herself to the loo as well coming down for more drinks.

In total disbelief

It was only when I sat in total disbelief on the sofa that all the pieces started fitting together. I decided to go with her and wash both her and my hands. We clicked again, this was now the 3rd click and the meter beeped again to read a HI for the second time. I did ketones to see how poorly she was but they were 0.1.
I knew then that if we went to hospital she would be seeing the diabetes team that day without fail but how could I actually turn around to her and say “Yes you have type 1 diabetes” but at the same time I didn’t want to lie to her. When Sienna was diagnosed she was very poorly but this diagnosis was at the opposite end of the scale and Paige was a lot older. Her friend came downstairs whilst I rang the NHS to get more advice and even the nurse said as she’s only just finished eating that her sugars would be high. Sorry but this was rubbish I thought to myself.
One more test and hour later and she was still HI, I explained that we would be going to hospital and that she would have to have a test to see how poorly she was but at the same time not saying that she definitely had D. We left daddy snoring in bed and woke my 11 year old son up to keep said friend company, they had been friends since pre-school so she wouldn’t feel left out so to speak.

15051995_10154718424276913_1653195420_oSienna supports her sister in hospital

A journey forgotten

We gathered our things and drove off to the hospital and I’m really sorry but I can not remember our conversations on her possibly having T1.
On arrival to the hospital it did take forever for her to be seen but once she was she had to have another clicker. Now for some people like us with young one’s you do think of their poor fingers and how sore they get after 3,360 or so clickers and the broken skin. A very emotional downfall to T1D as well as the cannula insertions on delicate skin and the amount of time we have to hurt our children to insert a needle. The constant numbers running around our heads, we now had double the work to do, double the dose of insulin to deal with as Paige is older her insulin doses were a lot higher, Double the pain of watching them go through this and not being able to take it away from them, treating both Hi’s and Lo’s throughout day and night was doubled a mammoth task that we now faced. But we DID IT and we will continue to do it for as long as it takes because we have to.
I have always said and will continue to say that as parent of T1D we all take an emotional battering everyday but put it all to the back of our heads and it only comes to the surface when talking or writing about this condition.

A journey shared

We shared Paige’s journey throughout her stay at hospital with our T1 family and we gained a few more friends along the way, we had been promoted to the families with two T1’s. Paige made the doctors and nurses jaw drop with how much she knew and how brave she had been doing her 1st injection and now that we have settled into some sort of normality she is still brave as all T1’s are. Watching Sienna in hospital being so supportive, so loving and empathetic to Paige was admirable for all to see. Sienna was offering Paige her hand to hold whilst she watched her do her injection and stroking her knee telling her how brave she was. All these things she remembered Paige did and still does with her.
They will forever and always have T1D to deal with but nothing can smash the bond of being a sister and we will not let anything stand in their way.

So to all you Supermums, Dads, Grandma’s, Aunties, Uncles, Brothers and Sisters you can do it, as a friend once told me you are braver than you were yesterday, stronger than you think and smarter than you seem.
Xx

 

From Night-crawler to Nightscouter, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 2

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I met Lucy and her family about a year ago, at an event organised by the local (South Hampshire area) families support group, Seahawks. We’ve spoken quite a bit, through highs, through lows and one day I offered her the chance to tell her story.
Have you already read part 1, Night-crawler to Day-walker?
Here’s part two of a three part story.

A quick introduction to technology

Sienna wears first g4Sienna wearing her first Dexcom G4 sensor

We were quickly introduced to Nightscout early after diagnosis as my best friend had a childhood friend in France and her little one had T1 (small world). We got talking on Facebook first and she told me of how they use this home-made computer like box and link it with a CGM (Continuous Glucose Monitor) so that they could see her levels on her phone or smartwatch anywhere. She could be at school and you could be doing the weekly shop and see her levels at any given time.
Later on this was to become the beginning of an end for my immense Night-crawling,

A hard smack in the face

sienna1Sienna has an awful hypo
One reason why CGM is so useful

Having talked to the Psychologist and Diabetes team about how scared I was of losing Sienna in the night I asked about CGMs (Continuous Glucose Monitors) to be told that we were doing a fab job and didn’t need one.
As encouraging as that was it didn’t help much.
I took it as a hard smack in the face because I felt my fears and the tiredness were all getting too much for me to cope with. I started looking into funding our own Dexcom CGM as a way of seeing her sugars without having to prick her fingers, without disturbing her, without me or us getting out of bed to test her. To give us both that much needed rest.
The CGM would allow a sensor to sit underneath the skin and tests the fluid, which in turn would send her sugar levels to a transmitter, in turn sending it to a handset/receiver.
Nightscout was mentioned to us right from the start of her dx (diagnosis). I had a friend overseas to talk to about how she found it with their little one. She could see her little ones sugars on her smartwatch.

I am not going to wait

xdrip
Sienna’s xDrip which I built myself

This new found technology was my way forward, I wasn’t waiting, I wanted to feel more settled and to fully be at ease in caring for Sienna but it all seemed a million miles away.
Nightscout was on the cards like a new goal I had to achieve and has now become a big part in how we care for Sienna.
I asked the team again about funding for Sienna and we were told this time that she would be funded by the NHS and that it wouldn’t cost us a penny. (How thankful are we to have an NHS system like this, but also a shame as really it does help more than they think).
But I would feel half lost if we didn’t have Nightscout.
Knowing that she would be funded we set about ordering some parts to build our own xDrip, this was the bridge between Sienna going anywhere without me and me wondering whether she was alright, say at preschool or going to see grandma, nanny and grandad, or friends and not worrying about the what if’s as I can see the what now’s.

Remotely caring for Sienna, together

xdrip3
xDrip fits nicely in a TicTac box
xdrip4

We can all be proactive in caring for Sienna as a family.
Sienna going off to preschool was a big issue for me as I felt that I would be out of control of everything. I felt that if I get it wrong I have only myself to blame, if someone else gets it wrong that would mean so much more. A mother will protect her young!! (but they are all trained in Type 1 and have a care plan).
With Nightscout I can now be sat at home knowing her sugars are fine as I can physically see them on my phone, just as good as the Dexcom, I can now leave her at total ease.
I cannot understand why the Nightscout has not been snapped up on the NHS? It should be. It gives parents that full peace of mind, it gives more than Dexcom can alone.
We waited too long to get funding to make this happen.
Parents, family, friends don’t want to wait, they have as much love for our little one as we do. It has been a massive positive for everyone and they feel more in control it’s the missing link. My advice is look into it, get it sorted, sort the levels and sort the stress that T1 as a whole brings.

Brighter days

Sienna is so brave as all our T1’s are, she makes my world a brighter place to be when I’m in her company and if she can be strong and not let it bother her then so can I. She is going to school in September and I can’t wait to watch her transition into year R and start her school Journey.
Together we will fight the T1 battle everyday but it does get easier and you start seeing the brighter side of things. Situations like how many different or unusual places have you found a used blood strip, how many times have you tried testing the wrong kid or how many times have you disposed of the food wrapper only to delve back into the bin minutes later because you haven’t checked the carbs on the back first.
But if all else fails know that you’re not alone, you really have thousands of friends all going through the exact same thing.
Thanks to all those people that made Nightscout possible for us, you really are something and beyond.

Children’s and Young People’s Network North West Education Day – #CYPNW2016

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200?
Oh heck
Oh heck indeed

Back in January after presenting for my first time ever (outside of work) to a large audience of 30 at the TalkT1 event Dr May Ng and I chatted offline about my presentation. I wanted to know how the messages came across, how I came across and how it could have been better, just in case I was to ever present anywhere again. From my point of view I was so nervous it was difficult to gauge others’ impressions.
Then came Dr Ng’s little question: “are you free on 14th March?”. She was organising the North West Children and Young People’s Network Education Day and had a slot for a speaker.
“Yes. Is it for a talk or workshop?”
“A talk. 200 HCPs in Children’s & Young People’s diabetes attending for the annual education day”
200?
Oh heck.
Oh heck indeed.
I was pleased though, as Mike (of http://www.everydayupsanddowns.co.uk/) was going to be presenting there too, plus I’d get to chat with May and Francesca again, plus the chance meet some of the parent reps such as Nicky whom I’ve chatted to lots.
I’d also get the chance to include some Nightscout stuff in there too; just try and stop me talking about that eh?

Flying high on a Sunday

NWCYPsundayThe short flight to Manchester was my first ever domestic UK flight, great fun although I was quite nervous about the following day. Nervous but excited at the same time but somewhat wondering whether I’d regret my ‘yes’ to May two months earlier.
Mike and I had a great chat over a few beers and dinner, amazing that it was only the second time we’d met but it seemed like we were old friends, chatting about all the good stuff our other #DOC friends do, so many great advocates and great people. It was good to chat about some projects we’re involved in, some separately, some together.
It was funny when Mike asked me to double check his carb count of dinner as honestly I had no clue, this being one of the areas of T1 care Amy definitely takes care of herself; my memory isn’t a patch on hers.

A Day In Tweets

Before I continue I just want to point to Mike’s Storify of #NWCYP2016, summarising the day and its presentations via a series of tweets.

Dr Philip Weston

Dr WestonDr Weston’s presentation started with Autonomic Neuropathy and almost lost me within minutes; I feared today’s presentations might be too much for my little brain to understand but actually it was fascincating, and scary, but mainly fascinating.
The audience were asked to test their pulses whilst breathing in and out, and then holding and slowly releasing their breath, with the idea to see if their heart beat was changing. If it doesn’t this *may* be a sign. Read this for more info: http://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/basics/tests-diagnosis/con-20029053.
The non-HCPs I was sat next to all agreed it was one of the hardest (read: worrying) presentations we’ve sat in on.

Professor Helen Cooper

Helen2Not only leading in her field, Professor Cooper is proof that having Type 1 need not stop anyone and she’s proved this during the 50 years since being diagnosed. I find it wonderful being in the company of people with such experience and each one (Derek, Lis, Pat and now Helen) has a great and happy outlook.
Helen’s slides were gripping and fun, she spoke about learning being essential and said “there’s no end point, you are always working toward improvements”. Slides of landscapes spoke about the Mountains which resembled the high points and valleys which resembled the lows, reminding me that earth is not flat, life is not flat and it made me think about those flat CGM traces we all seek which don’t mirror those a person without Type 1 would show.

Dr Chizo Agwu

agwuDr Agwu presented about Toddlers with Type 1, something I’ve always been grateful we didn’t need to deal with: people often say they don’t know how families like ours cope, well I don’t know how families with toddlers cope.
It really brought it home when meal times were discussed, about how on earth can you give insulin in advance – something many people/teens/kids do – when you’re dealing with a toddler who just won’t eat something. I remember those days well and it was hard enough when we didn’t have insulin/hypos/hypers to deal with.
She mentioned something I’ve thought for a long time: that it is important to screen parents for depression. Absolutely correct, we’re all in it together and if the parents aren’t functioning the team is going to suffer.

Mike Kendall – Blogger, patient, all round nice chap

Mike1Mike is a natural presenter, eloquent, factual, meaningful messages and (sadly for me) too blooming funny: how on earth was I going to have the funniest presentation after his?
Mike told the room what life with Type 1 can be like, what just four blood checks a day means in reality – you’re in the dark for most of it. His analogy of life with T1 being like playing Scalextric with dodgy controls when a third of it is in a tunnel was brilliant, the room was in stitches. I secretly cursed our resident comedian and vowed to never present after him again (joking of course).
Mike went on to talk about things which help people deal with Type 1, such as the gizmos/tech and of course Social Media, which seemed to unsettle a few in the audience.
Mike’s was definitely the funniest presentation I’ve heard in a while. Or in other words…grrrrr 😉

Dr Ruth Krone

KroneDr Krone gave a great talk about the benefits of CGM and gave some real life examples of people who thought their diabetes management was excellent yet spent most of every night in a very long hypo.
She raised a very interesting point given that many are fighting for themselves or their kids to get fully-funded-full-time-CGM: Ruth told us that even where funding is agreed 50% of patients stop using CGM full time within 12 months. That’s staggering, maybe CGM is just unsustainable, maybe alarm fatigue, maybe wearing another device is too much. It reinforced my belief that having the one or two week gaps after every sensor are good for our family’s souls.

Some guy called Kev – clearly an idiot

KevAfter the tea break it was my turn.
I was nervous as hell but actually looking forward to presenting I took the stage.
I’ll go into detail in the next post but in short I gave an overview of Amy’s diagnosis, moved on to talk about the education we received and what I feel is important, and spoke a little about transition hopes and issues. Finally – and way over time – I spoke about Nightscout and OpenAPS.

Helen Thornton

helenDue to my running well over time Helen had little time left, I felt guilty.
She presented an updated web site named With You All The Wa, full of education tools for HCPs and patients, it looked great, it looked like it contained some really useful stuff for all of us.
A key focus was for individualised goals, targets and education; music to my ears.

End of a great day

I’d thoroughly enjoyed the day, even the presenting bit. Getting the chance to listen to professionals dealing with interesting and sometimes tricky subjects was enlightening. I was amazed how much I’d actually understood.
I was grateful for the opportunity – thanks May – to attend.
I was pleased to meet Nicky, Paula, the HCPs I spoke to and chat with Francesca again.
I was sad to find out I’m not as funny as Mike. 🙂

groupshot

Me, May, Mike, Helen

Favourites and Motivations: Diabetes Blog Week, Day 6

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blogweek6

Day 6’s topic is ‘Favourites and Motivations’:
If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?

My favourite blog post of mine

My favourite is one I wrote for DblogWeek2014 for Poetry Tuesday entitled ‘A Childhood All Gone’. I was so nervous to release the first poetry I’d written since school days, especially one about something so emotional. I remember hovering over the ‘Publish’ button thinking should I or shouldn’t I, so I was overwhelmed with the responses I got to it.
Here’s an excerpt:

Well she seemed very nervous perched there on the desk,
Softly saying some words which caused us distress.
A quivering voice made me see from the start,
These familiar words still broke the nurse’s heart.

My salt covered cheeks saw confusion elsewhere,
On the face of a girl who awoke free of care.
Nurses make you better knew the 10 year old girl,
But not what the next few minutes would unfurl.

…read more…

My favourite article from Circles of Blue

…is of course one of Amy’s and although it’s incredibly hard for me to read I just love her own story of her own diagnosis, aged 10.
Diagnosis – a diabetic 10 year old’s viewpoint

Motivation

I only have one motivation in this world of diabetes and here she is getting ready to go on stage at yesterday’s National Paediatric Team Meeting in Birmingham and speak to a couple of hundred paediatric health care professionals.
Amy ready to go on stage

Diaversary #4 – meh!

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smiley-face-meh_designWas it really four years ago that Jane took Amy to the Doctors to find out what was wrong? Four years since the Doctor took that simple blood test and called us within minutes to tell us to go to hospital? Four years since my daughter found her childhood all gone?

We all try to be quite positive about life with diabetes in general but not today, today sucks. Big time. Turns out I don’t quite feel as positive as I did last year.

Whilst I truly believe that Amy’s diagnosis has actually helped in certain ways (determination to succeed, family health) I’d give it all back in a heartbeat if it meant Amy never had to do another set change, or finger prick glucose test, or think about this condition ever again.

The year ends with Amy having her lowest HbA1c yet at 7.2% and with us knowing how we could get it lower if we chose to try a little more. There’s no doubt that we’ve done some great Diabetes related things this year and that mainly focuses around the other people/children with Type 1 Diabetes, or their parents, we’ve met this year. At the moment it’s hard to focus on that.

So forget all those fancy electronic devices, your bionic pancreases, your smart insulin; just figure out how to swap my pancreas with hers. That’ll do me, let me take this burden away from her.

I’d like to think that these words will be the last time I think about Diabetes today. But I know it won’t.

#DBlogWeek 2014 Day 2 – Poetry Tuesday: A Childhood All Gone

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dblog week 2014Tuesday’s topic: This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.

So here’s my entry, the first poem I guess I’ve written since my school days. Hope it’s okay.

A childhood all gone: a true story of Amy’s diagnosis and where we are now

 
Well she seemed very nervous perched there on the desk,
Softly saying some words which caused us distress.
A quivering voice made me see from the start,
These familiar words still broke the nurse’s heart.

My salt covered cheeks saw confusion elsewhere,
On the face of a girl who awoke free of care.
Nurses make you better knew the 10 year old girl,
But not what the next few minutes would unfurl.

“Will I die” asked the girl, of the nurse, sat in front,
Whilst the family’s throats all swallowed a lump.
“You’ll need to take insulin to make you feel right.”
“Just the once? No? What? For the rest of my life?!”

With the first meal arriving when six struck the clock,
“Who would you like to give the first shot?”.
The needle-phobic young girl said without any strife,
“I might as well start if I’ve got this for life”.

With injection two done she tried to sleep tight,
On pillows with tear stains she awoke feeling bright.
The nurses so calming got us through the day,
But with arms full of D kit we wanted away.

We couldn’t go yet though as we hadn’t been told,
How to give Glucagon if she’s ever out cold.
The training was nearby but well out of sight,
But that curtain wasn’t as soundproof as the girl would have liked!

The next few weeks all seemed quite fraught,
Trying to remember everything we’d been taught,
Of injections and testing at least four times a day,
How we wish we could take our girl’s pain away.

It all seemed too much, just how did we cope?
With support from our nurses and minds full of hope.
But we felt quite alone, no-one quite knew,
Just how much we had to prepare, carry and do.

We were eighteen months in before I discovered my rock,
In the PWD* who are known as the #DOC*.
They teach me so much and in so many ways,
And continually help to brighten my days.

Three years now have past and how times have changed,
We’re stronger and confidence runs through our veins.
The little young girl with her childhood all gone*,
Would turn out to be so incredibly strong.

Amy and Kev

 
* PWD is people with diabetes
* DOC is the Diabetes Online Community, found 24 hours a day especially on Twitter
* So her childhood’s not all gone as such but she’s been launched into a world of responsibility and worry way ahead of her years.

dblog week 2014

Whirled diabetes days: a new blog, one year on

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blog announcementAnnouncement of new blog, November 2012

On World Diabetes Day 2012 our new blog, Circles of Blue, went live.

What a year it has been.

A good year.
A year of dealing with diabetes proactively.
A year of diabetes advocacy.

 
whirl (hwûrl, wûrl)
verb. whirled, whirl·ing, whirls
    1. To revolve rapidly about a center or an axis.

 

“there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1”

The blog was officially released on World Diabetes Day 2012 although I let everyone have a preview of it a few hours before that day dawned. Since then we’ve written 70 posts over many subjects and there’s now multiple series covering diagnosis, getting an insulin pump and travelling to India with Type 1. It’s fair to say I’ve been blown away to how it’s all been received, not just by the #DOC (Diabetes Online Community) but by the thousands of individuals who’ve happened to find an article of use to them thanks to Mr Google. It pleases me to see that people have reached my blog after search for things like ‘can a diabetic travel to India?’ (answer:yes) and ‘can a person with diabetes get a fast pass at Alton Towers?’ (answer:yes).

It’s been a year of reflecting

Well, actually it hasn’t been a whole year, most of the reflecting was done in November and December when Amy, Jane and I wrote our diagnosis stories – full series of articles is here. Occasionally I try to re-read them but I rarely get to finish them.
One of the most read areas of the blog is the series about travelling to India with Type 1 Diabetes with the top page of choice being Cooling Insulin with Frio Wallets. I really enjoyed re-working my original blog about that trip – Monsoon Meandering – reflecting on the epic trip it was and making it useful for any people with diabetes who are thinking about travelling there.

It’s been a year of learning

This time last year we knew very little about diabetes, we just coped with it on a day-to-day basis.
Amy had just got an Aviva Expert meter which made life so much easier that I started asking the #DOC about insulin pumps. It took a while to get Amy interested, and further time for her to not faint whenever they were mentioned, but in March 2013 Amy decided she wanted a pump and on the morning of the 20th June she took her last scheduled injection and starting pumping a few hours later – it’s changed her life in so many ways.
Now, we’re looking into CGM (Continuous Glucose Monitoring) and hope that early next year Amy will starting using that.
All of this learning wouldn’t have been so easy to obtain without my friends from the #DOC, so once again I thank you all for that.

It’s been a year of attending events and meeting people

“Since April I’ve met with around 40 – forty! – people I know from the #DOC”

Starting in April we met our first two people from the Diabetes Online Community (#DOC) – Laura and Anna, who gave Amy a demo of their pumps.
A few days later We went to our first official event the JDRF Discovery Day in Bristol; the Portsmouth “SweetMeet”; the JDRF Discovery Day in Dorset; the DRWF Wellness Day; the Greater Minds Inspire event; the Diabetes UK Big Event; the Bristol JDRF Walk to Cure.
In May we took part in Gavin Griffiths’ GBR30/30 Challenge, with Amy cycling 30 miles in one day and ending it with a run up a big hill carrying Gav’s Olympic Torch.
At the end of June we had a great two days in Alton Towers with Derek, Clare and Chloe, meeting other #DOC people Philippa and Vanessa.
Since April I’ve met with around 40 – forty! – people I know from the #DOC and more importantly Amy has met some other kids with Type 1 Diabetes; they’re sure to be friends for some time.

It’s been a year of stepping up our game

Amy became as JDRF T1 Ambassador and wrote a two page article entitled – Adventures with Type 1 – for their T1 Kids magazine, appearing on the front page
I’m halfway through becoming a Peer Supporter for Diabetes UK, where I’ll man a phone line for a few hours a week, helping people with any type of diabetes. I’m excited but also nervous about this opportunity as I know I might not have the answers they need but hopefully I can help them.
Earlier this year I was asked by a neighbouring area’s diabetes special nurse to introduce parents of newly diagnosed children to the benefits of using Social Media for diabetes. I ended up creating a leaflet entitled ‘How social media helps us with Type 1 Diabetes’ which has been well received by many, be they health care professionals, newly diagnosed people/parents as well as the diabetes community at large. I’ve been so grateful to the endless retweets, posts and linking done by others in getting this leaflet out there and feel sure it’s got to many of the right people.

The icing on the cake has just arrived

Whilst writing this article a new tweet flashed up on my screen. I was amazed at its content and I couldn’t be prouder than to have a leading, respected Doctor mention this blog.

roche reachExcerpt by Dr Kar, Roche Reach magazine, Winter 2013

Diabetes has improved our life. What? Really?

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diabetes journeyMy view of our diabetes journey

A couple of weeks ago I attended a training course with Diabetes UK in London, as I’m soon to become one of their Peer Support team. I’m not going to write about the training itself as for confidentiality reasons that’s between those of us on the course but there’s one part of it we did which made me (and a few others) think about life since diagnosis.

Your journey since diagnosis

Just before lunchtime arrived we were asked to search our soul to find out how we really feel about our lives with diabetes and whether it would raise any further questions, or highlight anything we needed to explore further. This seemed to be a good thing to do as unless we know and understand our own journey how can we help any of the newly diagnosed cope with the early days of their journey.

Urrgghh! Drawing!

Drawing lines on a piece of paper doesn’t come naturally to me but I felt comfortable with our diabetes journey and drew my picture of troughs (and troughs) and peaks (and peaks and peaks).
I started on the left of the page in the middle but soon wish I hadn’t as I ran out of room.
I’d finished way before everyone else and my mind wandered back to a Technical Drawing lesson at school when I proudly approached the teacher asking what to do next, the teacher took one look at my drawing and suggested that I’d finished before everyone else as I’d neglected to do it properly.
I checked my chart. No, we’re good, I’m happy with that.

Diabetes improves our life. What? Really?

Here’s my chart – which may not be drawn to scale whatsoever.

Hover over the yellow buttons to see what happened at that point in time.

29th Dec 2010
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diabetes journey chart

At diagnosis, our mood dropped, trying to come to grips with coping with type 1. Thoughts of cancelling the trip to India also got us down.

Lunchtime chat: could this journey really be accurate?

Another peer supporter, Nick Guerin (who won this year’s Quality in Care Diabetes Peoples’ Award) and I were chatting at lunchtime and talked about our own charts, which amazingly weren’t dissimilar, strange considering our journeys have been quite different. Nick’s blogged about it in his own blog Type Aware.
We both quizzed our own charts’ finishing positions: could it really be right that we both thought we’re in a better place now than before diagnosis. It seems crazy but actually I do believe it’s right.
I believe having diabetes has made Amy more determined to do well, to beat her peers in activities, to be thankful for what she has and can do. I feel I’m doing more things for others than I ever did before diagnosis too.
Having said this I’d be much happier right now if diabetes would bugger off.

Go on, have a go yourself

Why not draw your own journey since diagnosis and see how you get on. You may be surprised how you actually view your journey and it may raise some questions for you to explore.
Everyone’s different and there’s no right answer, this is just for fun.

How social media helps us with Type 1 Diabetes

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Leaflet: How social media helps us with Type 1 DiabetesDownload my “How social media helps us with Type 1 Diabetes” leaflet

Helping the newly diagnosed

In one of the very first pages I did for this blog I wrote this about the UK Diabetes Online Community on Twitter (#GBDOC):

“The info you can find is so useful that I think that the first advice from any DSN (diabetes specialist nurse) to any newly diagnosed UK patient – or their parent(s) if it’s a child – should be ‘get yourself on Twitter and search for #gbdoc’. Perhaps they should even take it further and refuse to let you leave hospital until you’ve set up your Twitter account and started to follow a few on the #gbdoc people… okay, maybe not.”

How? What? Where? Why?

I’ve created a leaflet which explains how social media has been useful to us; when we’ve used it and the responses we got back; the types of social media channels available; how to start.

NOTE: You can easily get to this page using the URL: http://bit.ly/circlesofblueleaflet

Click the leaflet on the right to download it, have a read and let me know what you think. If you’re going to print it, print it double sided and fold the leaflet as shown at the bottom of page 1.

If you think it’ll be useful to anyone please send them a link to this page, or share it on their Facebook page using the button below.

Health Care Professionals and Diabetes charities

I understand you might not wish to put this out as official material but if you’d like to do something similar I’m happy to help. Hopefully though you can point people in this page’s direction, using this link: http://bit.ly/circlesofblueleaflet.
Want to hear the view of a Doctor about the potential of Social Media use? Read this by Dr Partha Kar: Social media in diabetes: bane or boon?.

First injection at home, my best friend saved the day

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25th December: Amy, 4 days before being diagnosed,
reads one of her presents whilst wearing another

30th December 2010
Good friends of ours were due to visit on 30th December for some festive fun but I thought Amy would want to cancel as it was the day she left hospital with Type 1 Diabetes. Instead she surprised us all, saying she didn’t want something else ruined over Christmas, so they came.

It was all a bit weird, something akin to the fear we had when we brought home newborn Emilia but without the joy. Our friends turned up and the atmosphere was (very unusually) a little strained as no-one really knew what to say. We were all exhausted but we put a brave face on it and tried to pretend everything was normal. The evening was fine until Amy had to do her Levemir. We went upstairs to her bedroom and then followed a couple of hours of hell.

The last injection Amy had done in hospital had not gone so well, it hurt her. Therefore when she came to inject at 8pm she had that memory vivid in her mind. Mixed with the exhaustion and emotion of the last few days I should have realised there might be trouble, but I was totally unprepared for what followed. Amy had seemed so confident in hospital but when she tried to inject at home she freaked out.

It was heartwrenching as a parent to watch your child psyching herself up to do her injection. She had the needle poised over her leg, taking a deep breath then she would burst into sobs saying she couldn’t do it. Each time I suggested that I could do it but since I hadn’t practised (on her) in hospital, Amy was adamant, “No, you might hurt me!” I started off calm, eventually explaining to Amy that she had to do it or we would have to return to hospital and she didn’t want that. Kev came up after about 20 minutes and he tried to reason with her but by this time she was overwrought and emotions were running high. We cuddled as she sobbed, her face all blotchy and red. Once Amy was calm we tried again to no avail. After nearly an hour I started to loose my patience I’m ashamed to say, but I was exhausted and I knew she had to do this injection. I raised my voice and told Amy that she would have to let me do it. More tears.

Thank goodness my best friend, also called Jane, was there. We went downstairs as we were getting nowhere upstairs. That was the best decision of the night. Jane’s daughter had given Amy a small beanie that resembled Bagpuss and Jane distracted Amy suggesting she thought of a name for him. Then Jane laughed, saying “I know Diabetes is a right bugger. So lets call him Little Bugger, but you best call him Little B for short, especially at school.” That was the first time Amy had laughed since being diagnosed. It was like a breath of fresh air. Jane also said to Amy that she should feel angry and sad and that anytime she wanted to scream and swear about diabetes she could phone Jane and swear to her heart’s content.

Jane, being not so emotionally involved, defused the situation and brought laughter at a much needed time for which I will always be eternally grateful. She thought of using bribery saying “You know, you should be using this to your advantage. You could get anything out of your parents if you do this injection.” Amy smiled and said she would love to go to build a bear. Jane then offered to pay for her to get one and arranged for us to meet up the very next day. Thank you Jane.

Amy managed to do her Levemir injection with Jane and me beside her. What a relief.

Little B went to bed with Amy and to school until she sadly lost him on the school playing fields about 6 months ago. She still misses him.

Amy never has had to phone Jane, to swear down the phone, but she knows the offer is always there. Friends are a pillar of strength in times like this when you just can’t think straight anymore.

Coming home from hospital

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25th December: Amy, 4 days before being diagnosed,
opens a present she’s wanted for a while

30th December 2010

Whilst the care we received from the staff in the Northbrook ward of Winchester’s Royal Hampshire County Hospital was nothing short of excellent there’s something about being in hospital that just makes you want to get out, quickly. At the same time you want to stay in for the security it gives you, knowing that if there’s a single small problem you can speak to a nurse and the appropriate care will be given. At home you’ve got similar options as you can phone the ward to get advice but most of us want to stand on our own feet and be able to cope ourselves. Most people hesitate until they need to call, meaning the problem has got (far) worse before you seek advice.

There were many factors that made us want to go home and for the nurses to find it easy to agree:

On top of the list above, good friends of ours were due to come for a Christmas get together and Amy really wanted to see them. We’d spoken about postponing the evening until later but Amy was having none of it, already displaying that she wasn’t going to let diabetes rule her life and stop her from doing anything.

We decided to leave hospital after Amy had had her early evening meal and had successfully done her injection. The nurse was there to watch her do her injection, it felt like a test, which if failed would mean Amy spending another night in hospital. She didn’t want that, we didn’t want that. Up to that point all of Amy’s injections had gone well; it was almost obvious what would happen next.

Amy chose her leg as the site and prepared herself. We watched, her sister watched, the nurse watched, Amy hesitated and hesitated. In my mind I’d decided that we’d be staying another night in hospital. Then Amy did it. I glanced at the nurse who was congratulating Amy. In my mind I decided that we’d be going home tonight. The meal was eaten and we prepared to leave.

Our friends arrived at home moments after us. We shared hugs without smiles and without tears, whilst sharing glances which conveyed words which didn’t need speaking. We were all glad it was them there at that time. Sitting around drinking and chatting and the world seemed a normal place again except for one thing, I wasn’t drinking. Well I couldn’t; what if I needed to drive Amy to hospital quickly?

The time came for Amy to do her first injection at home, it was her night time basal of Levemir. Jane and Amy went upstairs to do it in private at about 8pm. At points I went upstairs to try and assist, one of our friends did the same, but Amy wanted to do this herself. All different methods of assisting were tried but nothing worked and she wouldn’t let anyone else do it either.

Finally they came downstairs at 10pm. The first injection at home had taken two hours.

To read more check out Jane’s article on how the first injection at home went in the next post.

The smallest conversation can mean so much

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A cup of tea cures everything (nearly)
By Petr Kratochvil via Wikimedia Commons

30th December 2010

In the children’s ward at Winchester hospital there’s a room where parents can go if you need a little time out, without children. Equipped with kettles, fridges and toasters, a sofa and some chairs it offers a place to go and calm, or to scream if that’s what you need.

Jane and I went in there to have a cup of tea – tea of course cures all problems momentarily – and to chat about what had happened during the last 24 hours and specifically because the recent Glucagon training session had scared us somewhat. We’d also been told a little about Diabetic ketoacidosis (DKA) and it was all becoming a little too much.

After a few minutes another couple came in to and heard us talking about diabetes. They asked us about what had happened and how we were.

Then they told us a couple of things which, for me at least, helped an awful lot.

Their daughter had type 1 diabetes and was diagnosed many years before. They praised the staff at Winchester and said how good it was that they could if necessary go direct to the diabetes team for anything that was even remotely connected to diabetes. This meant no worry about getting the GP at the local surgery who knew diabetes inside out, or having to explain our situation again and again. This helped a lot.

Some thoughts crossed my mind: why were they here?; what was wrong with their daughter?; just how often do they find themselves back in hospital with her?

Somehow I managed to get the answer to all these questions without even asking as they sought to calm the worries they could clearly see written all over our faces.

“This is the first time our daughter has been back in hospital since being diagnosed, she’s just having a fever and we’ve found it difficult getting her blood glucose levels down. We called the hospital and they said ‘don’t worry, just bring her in and we’ll check her.’.”.

They probably never knew how much their words reassured us.

 

Does this mean I can’t go to India anymore?

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Ladakh, India
By Jochen Westermann via Wikimedia Commons

One of the things they did as soon as Amy was diagnosed was to give her a pen and a pad, so that she could write down any question that popped into her head. In the next 24 hours many questions were written down but there was one that surprised me, pleased and relieved a personal doubt I’d given myself.

“Does this mean I can’t go to India anymore?”

We’d been planning a trip to India, our second family trip there and it was going to be a big one: one month away and visiting the roof of the world, the Himalayas and the regions near by. The centre point would be Ladakh and a two day coach trip through the Himalayas from Manali to Leh. I’d been planning this for months, reading for hours a day and I was just about to buy the flight tickets.

As soon as Amy was diagnosed and when I had a few minutes to myself I thought about the trip and one thing made me decide we wouldn’t go, we shouldn’t go, we couldn’t go. The trip to Leh in Ladakh goes over mountain passes as high as 5300m and at such heights Acute Mountain Sickness (AMS) can be a real problem which can prove fatal if not treated quickly.

Dr Google told me one of the preventative treatments is to drink sugary drinks.
Sugary drinks + diabetes + risk of AMS = no way am I doing that.
(It turns out Dr Google was once again wrong but I only found this out many months later.)

When Amy read out the questions she’d written down I couldn’t believe that with everything currently going on she was worried about the trip. It was at that point I made a promise to myself never to let diabetes stop us doing something we wanted to do, to never let the ‘it’s easier not to do it’ attitude take control, as long as we weren’t going to be reckless. With recklessness in mind and because of my limited knowledge of AMS and even more limited knowledge of diabetes we decided to skip Ladakh and go elsewhere.

What resulted was a 2700 mile backpacking trip using overnight and daytime trains, over four weeks, from Amritsar in the north, to Goa. We prepared for the trip with our recently learned diabetes knowledge and with the hospital’s email addresses and phone numbers close at hand. Everything went very well and whilst we had a few diabetes related problems it never stopped us from doing what we all wanted to do.

But we never would have gone if Amy hadn’t had asked that question.

You can find out more about that trip by reading our Monsoon Meandering blog.

 

All aboard the diabetes coach

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By Feliciano Guimarães via Wikimedia Commons

On the 29th December 2010 Amy boarded the type 1 diabetes coach – destination unknown – and we all joined her. Luckily we can get off for a breather whenever we please, unfortunately, she can’t.

We were lucky that Amy didn’t go for too long before being diagnosed; she was only 22 mmol/l when admitted to hospital and whilst she’d lost a fair bit of weight she wasn’t very dehydrated and didn’t need to be placed on a drip. Afterwards, we estimated that she’d lost one stone (14lbs, 6.4kg) and how we didn’t spot her weight loss is a mystery to us all.

Come the next day – New Year’s Eve-Eve – life seemed completely different. Emilia and I went to the hospital to find two tired people who’d got some sleep inbetween the tears. Amy look bright, so much better than the day before and spent time talking with her sister whilst Jane and I spoke with the DSN about everything we needed to know for the next couple of weeks.

Amy had been given a pad and a pen to write down any questions she had. I took one look and was amazed the things that mattered to her to most. First on the list was ‘does this mean I can’t go to India anymore?, followed by quite a few more – see First questions from a newly diagnosed diabetic.

Whilst Amy and Emilia played some games on the hospital bed Jane and I were taken aside for the (almost freaked us out) ‘what to do if your kid doesn’t wake up training session‘.

Later we met with the dietician and had further chats with the nurses and doctor.

The quality of care from the moment we arrived at Sophie’s Place had been impeccable.

 

 

The ‘What to do if your kid doesn’t wake up’ training session

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Glucagon
Glucagon
By Intropin via Wikimedia Commons

Oh. My. God.
One day you’re told your child has a serious illness and the next you’re being told what to do if they don’t wake up. It’s been a hard 24 hours.

30th December 2010, just after lunch:

Amy was eager to get home as soon as possible, to get things back to normal. We weren’t so sure. In some ways it was no different to when Emilia was born, we wanted to get out of the hospital as soon as possible; we wanted to stay there for our own security.

One of Winchester’s superb DSNs said to Jane and I that she needed to show us how to do something and that perhaps we should do it away from Amy. It was call a good call, whereas my suggestion of the ‘away from Amy’ place being the vacant bed next to her with the curtain around it, probably wasn’t.

Sat on that bed, with the (not-quite-sound-isolating) curtain around us, the DSN explained about severe hypos and how to use the Glucogel.

And then she did it. She got out the Glucagon kit, Jane’s worst nightmare.

The DSN realised that this wasn’t going to be our favourite subject and dealt with us very well, calmly and professionally but we had no chance of playing truant from this lesson. We understood the need to understand.

We each had a kit, with its bright orange case, its needle and its vial. We followed the instructions and all went well. We felt confident and did it again.

I hope I never do it again.