Diabulimia - Secrets and Lies

Recently, I've been asked to recollect my past in order to help me understand reasons for certain behaviours, and to help me have a brighter future. Looking back, I think I'm very lucky to be writing this today. I took so many dangerous risks when it came to my diabetes - none that I'm proud of. If only I could talk to my 16 year old self...

One of the biggest shocks is knowing that 1 tub of blood glucose test strips would last me 2 years, and 5 pre-filled insulin pens would last me 5-6 months. I had no idea how dangerous this was or how it would affect me and my family in years to come. My ultimate reason for this neglect was weight loss - but there were many others factors that contributed. If my 16 year old self could look through my eyes now, I'm sure things would have been different, but I knew nothing of the complications that my lack of diabetes management would bring. 

When sitting in appointments after a hospital admission with DKA (diabetic ketoacidosis) I would rarely say a word. I didn't want anyone to know my secret; I couldn't ever be found out... they'd only take it away from me if they knew. 

But it was all there in front of the GPs and Consultants in black and white, saying that something wasn't right. No insulin or test strips ordered, an A1c of 17, non-compliant, skinny, gaunt, in and out of hospital every 6 months... I would lie through my teeth and tell them that I took 40 units of long acting insulin each night, and 20 units of fast acting insulin with each meal. Just by looking at how small I was, alarm bells should have started ringing at this information. 

Even with tears running down my face, no one ever asked why I was crying. I still walked away from every appointment with the same line "see you in 6 months". 

"I've gotten away with it" I would think to myself. "I've fooled them again." They hadn't found out my secret, so they couldn't take it away from me. But I knew that what I was doing wasn't right and that I would need help one day. "Maybe they'll ask me how I am next time, or how I'm getting on with my injections, maybe then I could tell them", I said to myself. 

Part of not discussing it was that I didn't want to be the first to bring it up. Appointments were always so short that I didn't think they had time to do anything other than routine checks.

After 9 years I didn't feel that I could carry on for much longer. I didn't know who to tell... I had no relationship with my GP or Consultants; I didn't even know that what I was doing had a name. Diabulimia wasn't a term I'd ever heard of before. Who could I talk to? 

One name popped into my head - Diabetes UK. I knew that they had a care line and that I could email rather than phone. So I did just that. A desperate email was sent asking for help. I told them everything and soon received a supportive and positive reply. It was a big boost and I decided to talk to a health care professional after that.

Luckily I didn't need to approach the subject. I was asked by a doctor if I took my insulin as regularly as I should. "No, I rarely take it" I replied. I was asked why. "I do it to lose weight" I answered. The response I had; "You need to start taking it properly" - that was it, the end of the appointment. Time was up. 

I was stunned and silent - I just nodded. My secret was out. I'd finally built up the courage to tell someone who could help me, but after their response I felt even worse. My secret had been taken, but not the way I thought it would. I'd hoped for support, for a plan, for some sort of treatment, for some kind words... but there was nothing. 

If I could talk to my (then) 25 year old self I know what I would say... You can do it, if they won't help then you can still get through this. 

That's just what I did for 2 years, I didn't mention it to anyone until a few months ago when I needed help again. This time however, I was much stronger and much more determined to get what I deserved. Thankfully this time things have been different.


Helpful sites and information:

http://www.dwed.org.uk/

http://www.diabetes.org.uk/MyLife-YoungAdults/Food-and-diet/Eating-disorders/Diabulimia/

http://www.diabetes.org.uk/How_we_help/Careline/

http://www.jdrf.org.uk/life-with-type-1/faq-about-type-1-diabetes1/what-is-diabulimia

  

Mr T does diabetes

When it comes to my diabetes I'm always quite... protective of it. I suppose I think of it more like an object now, rather than a medical condition. I've named my pump and my blood glucose meter, I know which hypo treatments work best for me and my brain has become a personal carb counting app. I'm no expert though - far from it! But I do know what I do and don't like when it comes to my diabetes.

One thing that I've never liked is sharing my diabetes with partners. Not even a little bit... nope... no way...not a chance... couldn't think of anything worse!

There are many reasons for this, mostly because I'm stubborn, don't like people telling me what to do (even for my own good), and I'm always right! Other (more sensible) reasons include; I don't like needles and struggle when injecting in front of people, I find that my hypos upset others as well as myself due to uncontrollable emotions, I don't like people worrying when they see me testing my blood sugars or treating a hypo.

For example: "Oh my God, you're drinking Coke! Do you need me to help you?! Are you ok?! Blink once for yes or twice for no!!"

Me - "Ok... I've done this for many years. Now stop jumping up and down and make me a sandwich."

However, the time has come for me to grit my teeth, suck it up and accept that I occasionally need a little helping hand with my diabetes (as much as I hate to admit it).

Enter Mr T!!

No, not the Mr T who's going to tell me that I'm a fool for keeping my diabetes all to myself, but Mr Tailor, who tells me that I'm a fool every day, and that I shouldn't keep my diabetes to myself.

Mr T entered my life in September last year and embraced my diabetes in a much more understanding and accepting way than I thought he would. In fact his calm and understanding attitude towards my diabetes had left me wondering if I'd made a fuss about nothing all this time.

Mr T learnt first hand just how confusing my hypos could be when my blood sugars plummeted one night, and I (apparently) declared my love for him through a mouthful of chocolate digestives and dextrose tablets! The poor guy had only known me for a few weeks but still hung around while I giggled like a child and forced the biscuits into his mouth as well. I say apparently because I have no recolection of this happening - In fact I often wonder if this story was fabricated in order to embarrass me... I will never know.

Mr T has learnt that should he buy me 7 bars of chocolate to cheer me up mid hypo, I will in fact eat them all in one sitting without coming up for breath.

Mr T has learnt that when having a hypo I may fall into an unusual silence, crawl under the duvet and cry until I'm ready to face the world again.

My T has learnt how to test my blood sugars when I'm feeling low/lazy/hungry/sleepy/happy.

Mr T knows when my blood sugars are too high and brings me water to quench my thirst because I'm too exhausted to get it myself.

And the best part of all is that Mr T has learnt that diabetes is a huge part of who I am and accepts that I want and need to be actively involved in it; learning, researching, talking, laughing, crying...

Mr T has been pretty awesome when it comes to my diabetes, and it has been nice to have someone to lean on when I needed to. He still has a few things left to learn though... I am yet to cannulate him and attach tubing to him for the day... but his time will come... His dedication to my diabetes is heading to the next level ;) He doesn't know what he's let himself in for!

Ninjabetic x

P.S - If you want to follow/warn Mr T on twitter, he's @AmarTailor01

When the going gets tough

You know something’s wrong when you rock up to work at 2:30am, plonk yourself down in front of your PC, take your shoes off, put your feet up on you desk and settle down until the sun rises.

After being at work all day I planned to work on an assignment until I fell asleep. Sleep didn’t come, the office did, and I know that there will be no time for sleep tomorrow. Sitting at my desk now I feel awful... exhausted, emotional, confused... but I’ve noticed that the one thing in my life that’s good is my diabetes. Today has been a great day regarding blood sugars, and under all the stress that life is bringing it’s a relief to know that I can do something right. Especially when I find diabetes the biggest challenge in my life.

It’s not always like this, far from it in fact. After my DKA it’s been hard to settle into a routine again. It threw me off balance for a long time and I just wanted someone to take over for me. DKA was a confidence knock that I didn’t need, but today has been the first day that my diabetes confidence has taken off again.

It’s been a relief to say ‘thank you’ to my diabetes today. Thank you for giving me a break, thank you for playing nice and thank you for backing off when the going got tough.

Sweet Meet - The Type 1 Conference

Yesterday saw the first Type 1 diabetes conference in Portsmouth, the Sweet Meet. I've been waiting for this moment since I started getting into my diabetes 2 years ago and I'm so grateful to the Portsmouth diabetes team for pulling it off. 

I arrived early and immediately started chatting to other patients. We talked about our experience with diabetes, struggles shifting weight, availability and criteria for pumps, the lumps and bumps that injecting can bring... many hadn't spoken to others with diabetes outside of the clinic walls.

I mooched around chatting to members of the diabetes team that I hadn't met before. It was interesting to see how well they work together and what a happy little team they have. Then Kev (@Oceantragic) and his daughter, Amy rocked up, closely followed by Mark (@thedteam) who had come from Swindon for the day. One of the other patients from my pump trial was there too, it was good to see familiar faces supporting the day.

Partha (pompey diabetes consultant) kicked off with an intro to the day: Talks, info stands, refreshments, speed dating with health care professionals and commissioners, networking with others with Type 1 and a talk from Dr Iain Cranston about current research and the future of diabetes treatments.

I'd been asked to speak at the conference about my journey with Type 1 and my past and present experience with the diabetes team. I should have really prepared something to say on the day, rehearsed the main points that I wanted to get across, but I didn't want to sound stiff. Practice makes perfect and my diabetes is far from perfect!

Instead I decided that my approach would be to 'wing it' (an approach that I use on a daily basis), smile a lot and make jokes at Partha's expense. This seemed to go down well, and after Partha had taken up most of my talk time with his intro, I managed to get a few words in. I still find it difficult to speak out loud about my past with diabetes, but it's getting easier. I could hear words of encouragement and understanding from the other patients as I talked, it was nice to be face to face with people who really knew how I felt.

Next up was a chance to 'Speed date' with different members of the diabetes team; a dietician, podiatrist, consultant, psychologist, antenatal nurses, community diabetes specialist nurses, adolescent diabetes nurses and commissioners. 

On our table of 6 we had 8 minutes with each HCP to ask them questions about the service, make suggestions about how it could be improved and tell them what works well. It was interesting to get feedback on our questions and have the promise that they would be followed up. 

My questions about the availability (or lack of) psychological support, foot pathways, online carb counting tools, education for GPs, out of hours and 24/7 care were answered as best they could in the time we had, but I have much more to ask... I arranged to speak to a few members of the team in my own time to see what could be done. 

When our time was up it we networked with other patients. I chatted with a lady from Bristol who runs 4 diabetes support groups and has a lot of experience in dealing with diabetes teams and commissioners. 

I met the most amazing man, Derek, who was 76 and has had diabetes for 61 years! He told me that he's never had a complication in his life and his secret was keeping fit. 

I was introduced to a lad who was a similar age to me. He'd come from Reading as he used t go to University in Portsmouth. He was looking for others his age to speak to in his local area, so I told him that I would spread the word on twitter and facebook and see if I could find anyone.  

Finally Iain Cranston (pompey consultant and tech geek) presented research and treatments that are available and on the horizon. New ways of delivering insulin via pumps and pens, tattoos that could tell a person when their blood sugars were high or low, CGMs, closed loop systems etc. I love listening to Iain talk - he's so clever and passionate about new technologies, I try to keep up in appointments and we often start and finish by discussing what's available or what's coming our way.

As the Sweet Meet came to a close I felt proud that I'd been asked to be a part of the day, that the team had done such a good job in setting it up and that we had been listened to. It was a great experience to attend a conference where I wasn't just talked at. I think that's where many diabetes conferences go wrong - the patients are there with ideas and they should be heard. 

Diabulimia

 

Imagine walking along a dark and cloudy road at night, alone, not knowing where you are, how you got there or where you’re going. The air is calm and still, but there’s a chill playfully biting at your exposed skin, enough to make you wrap your arms tightly around yourself, protecting yourself with the only tools you have.

Suddenly, branches from trees overhead begin to sway as the wind picks up, causing beautiful shadows to dance in front of you, distracting your attention from the path ahead. As you follow the shadows; not wanting to take your eyes away from the delicate patterns, you stumble off the path into a long grass. You don’t notice your change of direction because the pull of the elegant shadows is enticing and teasing you, daring you to follow them further.

Suddenly a familiar feeling of being exposed and vulnerable creeps up on you and you start to sense danger ahead.

As you become more and more lost from the path you start to hear noises from every direction, each noise gets louder and louder, closer and closer. A sudden anxious feeling begins travelling through your body, starting at your toes and moving upwards, dominating your senses and causing you to lose all rational thoughts.

The wind becomes stronger and more forceful, howling as it pushes you in different directions. You feel like rough invisible hands are grabbling at you, forcing you backwards and forwards, shaking you like a rag doll.

Breathing becomes difficult, tight sharp breaths start to make you feel light headed and dizzy as lights sparkle in front of your eyes. A vice like clamp is squeezing the air out of you as the invisible hands bear down, forcing you towards the ground. The shadows grow larger as they close in on you, the howling of the wind is relentless.

And then you open your eyes.

The air is calm and still, the shadows are statue like, the only movement comes from you as you pick yourself up, smile and breathe deeply as you continue on the path... Until you need to eat again... need to inject again.
 

 

 

Diabulimia: This is when people with diabetes deliberately skip insulin doses in order to lose weight. Diabulimia is a very dangerous condition that isn't recognised as a medical term.

 

http://www.dwed.org.uk/About-Us/

 

http://www.diabetes.org.uk/MyLife-YoungAdults/Food-and-diet/Eating-disorders/Diabulimia/

 

http://www.diabetes.co.uk/Diabetes-and-Diabulimia.html

 

DKA - Crash Bang Wallop

Perhaps I tempted fate 4 weeks ago with my proud celebration of going 2 years without DKA (diabetic ketoacidosis). Maybe I should have prepared better for when it hit again. I just didn't expect it so soon... not when I had everything under control.

 

It all happened so suddenly - One minute I was in bed, listening to friends drunkenly singing along to a guitar downstairs as I drifted off to sleep, the next I was stumbling around getting dressed and launching myself out of my partner’s house, clutching my stomach and telling him not to stop me from leaving.

 

Somehow I made it home and crawled to the bathroom on the ground floor. My mum slept soundly two floors above me and couldn’t hear me vomiting crying or reassuring myself that the sickness would pass. At that stage DKA hadn’t crossed my mind – I thought it was a stomach bug, but as the hours went by the vomiting continued. 5, 10, 15, 20 + times… each time I was feeling more dehydrated, finding it harder to catch my breath and I was becoming weaker.

 

At 6am I accepted that I couldn’t get through this on my own (even with Iain the pump chugging away). I fell into my mum’s room and she immediately called an ambulance.

The next 24 hours were a blur – I went to A&E and was taken to resus so I could have my own nurse. The intensive care team came to asses me and made plans for another move.

On admission I was leaning towards DKA - Blood sugars were 20.4 ketones were 3.5 and PH levels were 7.33 However IV fluids and insulin were not correcting my levels and after an hour or so this resulted in sugars of 30, ketones of 4.9 and PH levels of 7.21 - I was later told this was because the first response who had initially cannulated me had some difficulty, leading to fluid collecting in the tissue of my hand and arm instead of doing its job sufficiently, causing cellulitis – bring on the Simpson style chubbiness and days of IV antibiotics to correct it. 

 

Cannula number 2 of 6

 

One of my biggest worries was what to do with Iain the pump. I’d only had it for just over 3 weeks and I didn’t know what to do regarding sickness and temp basal rates (TBR) yet. I’d increased the TBR to 130% the night I became ill (this was a guesstimate) and I’d left it at that rate ever since. No one that was looking after me knew what to do with an insulin pump, but what worried me the most was that I wasn’t given any direction with it at all. Should I leave it on or take it off? No one knew! A sliding scale had been set up with 9 units of insulin an hour and Iain was still pumping away at 130%

 

Dangerous? Yes I’m sure it was but I was barely conscious and couldn’t make the decision for myself. The staff were concerned, I could see that, but I could also see that they weren’t confident in giving me pump advice – it was a treatment that they didn’t come across often.

 

After having 13 litres of IV fluids pumped through me I woke up the next day to sugars of 5.5 and I turned Iain’s TBR down to 50% (again a guess) as my sliding scale was still up. My diabetes team came to see me and advised me to stop the pump. Hurrah for people who knew about pumps!

My arms & hands took a needle battering so the Drs had to cannulate my feet instead!! Ouch!!

 

The next day I was told that I was out of DKA but I was still acidotic and as I was still vomiting the sliding scale stayed for a further 4 days. I spent the rest of my time on a ward and I was told that I had food poisoning. I was completely exhausted and I felt worse than I ever had done with DKA – not just physically but emotionally. I barely spoke to anyone but was comforted by the fact that Partha (a consultant from my d team) came to see me every day. Although I haven’t been under his care for 2 years now he still came by every morning and checked on me, he sat at the end of my bed when I had my head in my hands and tears in my eyes, he told me that it wasn’t my fault and that I would get better again… It was nice to get that extra mile… that verbal hug.

 

I’m home now and feeling a lot better than I did. I ate solid food for the first time yesterday but I still feel like my tummy has been run over… reversed on and run over again. Iain the pump is happily pumping away and my sugars have settled nicely back into their target of 5-10.

 

My mood is lifting as I’m getting better but I have the worry of DKA’s on my mind now. Call me naive but I thought this would stop… now that I’m looking after myself I thought I’d seen the end of my hospital admissions. I thought about giving up... I felt that I'd let myself down by being sick... let my diabetes team down... I'd become an unplanned admission statistic that they try so hard to combat. Then I realised how much I'd be letting myself and others down if I didn't get back up, dust myself off and try again. There's always something to come back and fight for, even if I couldn't see it at the time.

Ninjabetic x



 

Small pricks don't hurt.

One of my biggest pump fears was feeling the sting as I put the cannula in. Anything that can sting or scratch scares the life out of me! As you can imaging, having diabetes is quite a challenge, especially as I used to inject 5 or more times a day!

So when it came to inserting my first cannula I was quite anxious. My consultant heroically sacrificed his own stomach to demonstrate how to do it and I had tears in my eyes as I watched, but I knew that I had to do it. I couldn't have a pump without the cannula, and it's not like the needle stayed in once the cannula was there anyway. 

The 1st try took a few minutes. I'm laughing now as I think back because I was holding the needle in my right hand as my consultant also held my hand to guide me with the needle. I was pushing my hand away from my stomach and he was pushing my hand towards it. After a few deep breaths I touched my skin with the tip of the needle and slowly pushed it in... and it was done! No pain, no tears, no ninja face down on the floor... just another needle. I make such a fuss about needles that I was secretly annoyed that I'd been proven wrong and my consultant (as always) was right, it was quite easy!

Take 2 - My 1st set change 2 days later brought with it a few tears. I was home alone and knew that I needed to have a cannula change. I lay on my bed and tried to push the needle in... nothing happened. I tried again and again, getting frustrated, hot and sweaty because the needle just wouldn't go in! Then I realised that I hadn't taken the protective plastic cap off the needle. Rookie mistake! I'd gotten all hot and bothered for no reason After my rather slow realisation I managed to get the needle in painlessly and I was all set to go another 2-3 days without any more needles.

Take 3 - I changed the cannula in under 1 minute! I think i may be winning my personal battle against needles! 

I'm feeling quite relieved - not only for my diabetes management but because my nursing degree is growing ever nearer and I am yet to meet a nurse who cries at the sight of needles! I can't be that person... I need to get over it ASAP! 

To quote myself during my presentation at the Diabetes UK Professional Conference - "Small pricks don't hurt" :)

Ninjabetic x

Insulin pump trial - Week 1

 
 

So a few of you may have heard me mentioning that I started my insulin pump trial last week. This is a 6 month trial with frequent reviews at my diabetes clinic to ensure that I’m getting the best out of my pump and that I can use it safely.

Before starting I sat down with my consultant and set myself 4 goals to achieve by the end of the trial:

 

• Reducing my A1c by 5mmol/mol
• Maintaining a healthy weight and BMI
• Reducing blood glucose variability by 20%
• Reducing hypoglycaemia experience by 30%

I’ve already attended a diabetes educational course (JIGSAW) and intense insulin therapy appointments (for almost a year) to try to improve my control. Now I need to make sure that an insulin pump is going to be effective treatment for me. Once my 6 months is up my pre and post trial data will be sent away to the CCG (people with the money) to assess my need to keep the pump.

 

Go time!

 

The night before my start date I ran through all of my biggest pump worries.

 

These were:

 

• Inserting the cannula myself
• Being able to hide the pump in my clothes
• Catching the tubing on handles/people/my dog/anything that sticks out
• Hypos/DKA

 

After a week of having my pump (named Iain after my consultant) the only issue that I’ve had is with inserting the cannula. However this reminded me of when I first started injecting, when I would spend ages trying to put the needle in. Soon after diagnosis I had no issues, so I really hope that I will get to that stage soon with my pump.

 

Iain the Pump - Accu-Chek Spirit Combo

 
 

After 2 days of pumping I was amazed at my blood sugars readings and how controlled they had become, I fell in love with Iain the pump (and soon regretted calling him Iain). Pre and post meals blood sugars were within my target of 5-10 and although I was having a few lows my rebound highs weren’t anywhere near as bad as they were when I was on MDI (multiple daily injections).

I actually look forward to testing my sugars now, whereas before I used to dread seeing my readings because I would feel so disappointed with myself if they were off of target (which was quite often).

Taken on April 2nd - The day before I started on the pump

 

Taken today - After 1 week of using the pump

 

 

All in all my 1^st week of being a pumper has been a big turning point for me. If I’m honest I was starting to despair with my diabetes and it was really upsetting me, to the point that it affected my life far too much. Now I have a lot more hope and have a positive outlook again.

If there’s anyone out there who is thinking about insulin pump therapy then I would definitely recommend you give it a go if it’s possible (I know it’s not always easy to get one). And if it’s not for you, then at least you’ve tried!

 

Ninjabetic x

Pump it up!!

Hi! My name’s Laura and it’s been 2 years since my last DKA!

 

As strange as this may sound, staying out of A&E for two years is quite an achievement for me! If I turned up now I bet none of the staff would say; “Oh you’re back again!” or recognise my face. Often I felt like a part of the furniture. I even knew how to disable the annoying beep on the sliding scale machines.

 

Although I’m proud of myself for all I have achieved so far, my blood sugars still aren’t where they should be and this is having a huge knock on effect, physically and emotionally.

 

Despite numerous changes to my insulin regime, CGM loans, regular and lengthy appointments with my (very patient) consultant and a diabetes educational programme, I’m not getting any further towards good control – In fact my results show that I’m going to opposite way!

 

I knew diabetes wouldn’t be easy but for months now it has been a time consuming, energy draining, unresponsive  pain in the… pancreas!

 

My a1c has crept up - My frustrations have also crept up with it (can you tell?)

Hypos have become a regular occurrence - In the last 30 days 15% of my blood glucose readings were hypos.

Weight management is distracting and affecting me… even losing a few pounds is an impossible task.

 

It’s been almost 11 years since my diagnosis and still I regularly wake up feeling like I’ve not slept for weeks. I worry about falling off the diabetes wagon wheel and getting crushed by complications. I still feel faint at the sight of injecting myself… the bruises injections leave on my legs and stomach.

 

So tomorrow I start my six month insulin pump trial and hopefully this will be the start of getting me back. I desperately want to feel like me again… I want to be the bouncy, carefree, energetic ninja that I know is inside me!

I don’t want to feel that I’m taking one step forward and two steps back anymore… I just want to keep stepping forwards.

 

Bring on team pump!!!! :)

Ninjabetic x

The Diabetes UK Professional Conference - Meet the Professionals

This week I attended the Diabetes UK Professional Conference which was held in Manchester. I was invited there as a member of the Diabetes UK Young Leaders Action Group to give a talk about social media and how it has helped me change my diabetes for the better. I was also there as Ninjabetic (a diabetes advocate) and as myself (someone who’s fast approaching 11 years with Type 1 diabetes).

 

I had two intentions while I was at the conference:

 

Firstly I wanted to get across the message that social media has been the most powerful tool in getting me on track with my diabetes.

 

Secondly I wanted to gain an insight into the professional world of diabetes, to hear what happens in meetings, behind closed doors and away from the patients.

 

The latter was very easy to do as no one knew that I was a patient, other than the few who recognised me from twitter pictures. I sat in talks about depression and best practice; I listened to speeches that included research, data analysis, trials and studies… The majority of it was new to me, and the majority of it impressed me.

 

Because so much information is kept away from the patients it was a real eye opener to sit and listen to consultants, nurses and managers talking about the issues that are discussed by patients on social media every day. Being able to listen to health care professionals was an inspiring and captivating experience. It was also very motivating to find that there was the same passion behind their voices as I read in people’s tweets or Facebook comments. There was a lot of willing to think outside the box and to reach outside of the comfort zone. I learnt a great deal from this side of the conference & I feel that other patients would greatly benefit from experiencing similar.

 

When it came to my talk about social media I knew that it would be very different to the talks that had been given throughout the rest of the conference. I started by saying that I didn’t have fancy statistics and charts, that I didn’t have any data or tables to prove that social media has helped me. The only evidence that I had was right there in front of them... it was me.

 

A few minutes before the talk I’d bumped into my old consultant who had looked after me through my nine non-compliant years. As I looked around the crowd I saw him sat quietly in the audience listening to everything that was being said, and it was a comfort to know that he was there to support me and to see how far I’d come.

 

I explained my journey and referred to the destructive years that I’d had prior to taking care of my diabetes. I explained what Ninjabetic was and what the Diabetes Online Community gave to myself and others. I finished by saying that one simple suggestion to start using social media to interact with others could be the turning point for patients. I wanted to emphasise that this free tool could help patients engage with their diabetes and be a huge benefit to their management.

I’d like to think that I was able to reach a few of the people who were sat in the audience, that I may have left an impression on those HCPs that I didn't know. If only one of them suggests the use of social media to a patient then I would know that I’d done a good job that day.

 

I admit that the support I had from the Diabetes Online Community before during and after the talk was overwhelming compared to the response from the audience. If I’d received anywhere near the reaction or support from the audience that I had from the patients and carers on twitter then maybe I wouldn’t have felt so disheartened when the talk was over.

So what did I personally take away from the whole experience? Positives and negatives... as I’d expected.

The same conversations are happening… conversations that excite us and spark debate amongst us! Conversations that could lead to great things for the future of diabetes care. However what stood out the most for me is that both patients and Health Care Professionals are discussing the same topics… they just aren’t coming together to do so in the way that they should be.

 

Communication is key.

 

Ninjabetic