7 day working in the NHS

“We live our lives 24/7 and an illness doesn’t stop for anyone.”

This was said by a patient recently at a conference I attended. The conference was a learning exchange involving patients, carers and health care professionals, looking into 7 day working across the NHS.

To me it seemed like one of the rare opportunities that I wish would happen more often, so I of course jumped at the opportunity at attend as a patient representative. Those who had the power to make 7 day working a reality were sat on my table, listening to not only my experiences, but those who had shared theirs with me the previous evening.  

Back and forth all day, we listened to stories from patients and carers… some incredible stories of the lack of available specialists leading to life threatening situations. A common theme rang throughout the room… patients who need specialist care fear being admitted to hospital on a weekend or an evening. I certainly sympathised with them… nodding in agreement and sharing my recent experiences that have lead me to sharing this same fear. Any hospital should surely provide its service users with reassurance that they will be safely looked after, however it seemed to me that what is happening is that poor care, for whatever reason, is reinforcing fear in its users.

During the conference I was sitting next to an elderly gentleman called Rodney. Rodney suffered from a stroke many years ago, and thankfully on the day it happened he was saved by a specialist. This is what Rodney said to the room;

“I feel lucky that I had a stroke on a week day. Had it been any other time I would not be alive now.”

Once Rodney had recovered from his stroke he made it his mission to have a 7 day stroke service in this local area. He spoke to commissioners, health care professionals, other patients and the media. He took on the battle to ensure that people would be safe should they experience a stroke out of hours and he was successful!

Personally, when it comes to my diabetes care I feel completely looked after and safe when admitted during a week day because my diabetes team are there. Even if the person sent doesn't know me, they still have the knowledge to make a safe decision. However this year I have been admitted on weekends and evenings and I have had no end of problems. My diabetes team are aware of what I went through and how dangerous it was, and I'm happy to see that something is being done about this. I know that it's not through lack of trying by my D team, I know they are as frustrated as I am, but should it come to this? Should a patient with diabetes go into DKA or hypo due to a lack of understanding before action is taken? 

If you'd like to look at this link you can read what other patients with diabetes have experienced.

Other patients at the conference spoke about the trouble they have had when diagnosed with an illness over the weekend. The diagnosis is made, however it isn’t until Monday morning that the appropriate treatment can be given, leaving patients deteriorating or worrying. I myself was told once on a Friday evening that a scan showed a shadow on my brain, but nothing could be done about it until the surgeon was in the hospital on the following Monday morning. Knowing what this could have meant left me distressed and panicked for 2 days before the surgeon could perform a biopsy. An early diagnosis is of course fantastic, but not if the means to treat the illness aren’t available.

What struck me that day was the willing from the health care professionals to do more. To go above and beyond and to admit that mistakes are made, projects fail, lessons are learnt and ideas simply must be shared. I could sense their frustrations when they heard of the patient stories, and although there are some bad apples out there, I was grateful that in that room was a consensus that 7 day care can be done.

Many concerns were shared by both patients and health care professionals regarding a 7 day service:

• Clarity is needed over the definition of a 7 day service
• What would 7 day care mean to the public and professionals
• Will there be standard expectations/minimum standard across the UK and can this be extended and developed over time
• Is it possible to have a service where standards don’t differentiate between week days and weekends
• How will the public be educated to use the service - e.g. when to use it and how to use it appropriately
• Do health care professionals have the will and desire to make this work
• Will a 7 day service be safe for patients and staff
• How can a 7 day service be implemented when an overhaul is firstly needed for traditional 5 day services

These questions and concerns have been taken on board and will be put to Sir Bruce Keogh before he writes his next report. Let’s hope that this learning exchange has been enough to make positive steps towards a safer future for you, the service users of the NHS.




Ninjabetic x

Am I in charge when DKA strikes?

Catching a glimpse of myself in the bathroom mirror last night I stopped and did a double take. I was shocked to see how different I looked. My usually bright and sparkly blue/grey eyes looked dull and heavy, the skin under my eyes was dark and sunken and the rest of my face was pale and washed out. I looked burned out and realised, as if seeing my refection was confirmation, that I was ready, once again, to give up on the day. It was 7pm.

The previous week I had been in hospital for 5 days with DKA (Diabetic Ketoacidosis). It had only been 2 months since my last admission with DKA and it was the last thing I was expecting, because 2 weeks prior to my admission had been a diabetes dream. My blood sugars had barely been out of my target range (5-10 mmol/L) and the heat wave hadn't caused me any issues with hypos at all. I was content, relaxed and finally feeling like everything was falling into place. 

This recent admission was much like my previous one in May (find that story here). I was vomiting constantly and although my sugars weren't particularly high, my ketones were rising. I was admitted to hospital at 9pm; however it wasn't until 12 hours later that I was put on a sliding scale. 

I'd been told in A&E that I would need to manage my insulin pump and adjust my insulin according to my blood sugar levels. This meant making decisions about how much to increase my temporary basal rates by, how long for and how many units of insulin I should take as a corrective dose. This meant making those decisions whilst on the verge of DKA (or maybe even in DKA at that point), whilst absolutely exhausted, whilst scared and confused. This meant that I could have easily given myself too much or too little insulin, which in my state would have been very dangerous as I couldn't focus on how my body felt. I was then moved to the Medical Assessment Unit where I was told to carry on with what I was doing with my pump, but at that point I had no idea what I was doing. I was so tired I couldn't function - I was very much out of my comfort zone as regards managing the pump.

The next morning I was still vomiting and had been all night. One of the nurses from the diabetes team came to see me and alerted my consultant who came in straight away. He ordered a sliding scale to be put up as my ketones were being caused by the fact that I couldn't keep food or fluids down. Within an hour or two my ketones were lowering and the vomiting had stopped. I was so grateful that my consultant had been there as I was becoming so desperate that I considered leaving. I didn't feel safe at all. 

My sliding scale had been taken down before I'd even attempted to eat anything and I'd been told I could go if I was well enough. I was so desperate to leave (for many reasons) that I went when I should have stayed. This resulted in me coming back in the next morning - straight back into the same room with vomiting, high blood sugars and high ketones. This time it took three hours before any fluids or a sliding scale were put up, despite me explaining that they only way to get rid of the ketones was with a sliding scale. I was asked the same questions that I had been two days before. Had I eaten anything that might have caused the vomiting, had I been around children, what are my blood sugars usually like, how do I manage my pump...? I answered, through tears, and repeated myself over and over again. Finally the sliding scale was set up and finally the vomiting stopped. 

I felt that my insulin pump was being used in place of a sliding scale. I felt that I was being relied upon to treat myself when I was in no fit state to do so. I felt that unless my diabetes team were nearby then I would have been better off at home. 

My consultant was away on the day of my second admission but had phoned to say he was worried and asked one of his colleagues to check on me. Another diabetes consultant came in and reassured me that if I needed anything at all then to ask someone to call the diabetes team who would assist me, then a diabetes nurse came in, then another consultant. Each time I felt more relaxed and looked after, I just wish that 24/7 care was in place and they could have been there from the start.

Last night I gave up on the day at around 7pm, which was fine because I could start over today. I just hope that I still have the energy to carry on if I have another admission, because if last week is anything to go by... I'll need it.

Ninja x 

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



 

Insulin pump trial - Week 1

So a few of you may have heard me mentioning that I started my insulin pump trial. 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 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

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

My diabetes smile...

Yesterday was a hugely positive and enjoyable day for me. Not because I had a excellent run of blood glucose readings, or because I didn’t bruise myself with a needle. Not because I didn’t have a hypo or need to think about what I was eating. No… It was because for over an hour in my diabetes clinic I saw cheerful faces, heard welcoming and attentive voices, and felt I nothing but enthusiasm and motivation while I was there.

Firstly my dietician came and chatted to me while I was waiting for my appointment. She thanked me for answering a few questions for a diabetes newsletter that is sent out to health care professionals. She’d already thanked me a number of times via email, but the fact that she stopped and took time to chat to me in person (when I’m sure she was very busy) meant a great deal to me.

Secondly I saw other young people in the clinic! Real life young people - not like the ones you see on the front of diabetes leaflets, but people who still had all of their limbs, and were smiling too… always a good sign when you’re in a hospital! Then whilst I was sat in my consultant’s office the DSN who ran my education course (JIGSAW) popped her head round the door to say hi and comment on my hair. The fact that she’d noticed I’d changed my hair made me smile because it showed she was thinking about me… me and not my diabetes, me and not my hospital number, me and not my a1c result.

Next up was my consultant who spent over an hour with me; listening to me talk about my obstacles, concerns, frustrations, achievements etc. An hour is a long time for an appointment, but in the last 1.5 years I’ve never had an appointment that’s been less than an hour long! I thought about what he could have gotten done apart from listening to me rattle on, but he sat and focused on me. He even laughed at my awful jokes!

In that hour he reviewed my blood glucose readings from the past 90 days, set me up with a CGM (as promised) for a week to assess night time hypos, talked to me about the process of getting an insulin pump, talked me through my test results and even discussed a persistent problem (unrelated to diabetes) that I’ve had for 4 years which my GP, sadly, hasn’t been successful in treating.

I’m pleased that my consultant's recognise that 10-15 minutes isn’t long enough for me to get to where I need to be. I know that I won’t always need such long appointments, however I am confident that should I ever need more they will be there for me. 

I left the hospital with another appointment booked for 2 weeks time on a day and time that suited me. Then I thought to myself about how lucky I am to have such a dedicated and supportive team who have the tools to help me with my diabetes management.

I hear stories every day about people who can’t see any member of their diabetes team if they have problems, need to take days off work just for one  appointment, don’t have access to CGMs and won’t be funded for insulin pumps. Unfortunately that list goes on and the people who suffer at the end of the day are the patients. They lose faith in the system and just have to… get by.

This truly makes me appreciate what I’ve got, because I know that come September I won’t be seen at this hospital anymore and I’m already starting to fear that move. I’ve seen that one of my previous consultants from the same hospital has posted a blog that he’s written about Utopian care in the diabetes department. Based on what I saw yesterday and the support I’ve had over the past 1.5 years I can definitely say that from my point of view… the diabetes team at Queen Alexandra hospital, Portsmouth, is doing all they can to win the fight for Utopian care.

I hope that other diabetes teams take notice… and that soon everyone can walk away from an appointment with a smile.

 

Ninjabetic x

What a difference two years makes....

After Hannah and I were asked to speak at the Diabetes UK Professional Conference in March this year, it really hit home how much has happened in the last 2 years. Looking back I can’t believe where I am today and how I got here.

In January 2011 I’d had diabetes for 9 years. Diagnosed at the age of 16 I didn’t know anyone who had diabetes. I didn’t know what it was, what it meant or how it could affect me. It was a completely new world to me… a world that scared me. I thought it would take away my independence, my friends, my future… and myself.

For nine years I refused anything and everything to do with my diabetes. Injections, blood glucose testing, HbA1c tests, appointments with health care professionals… I pretended I didn’t have diabetes… though I knew it was always lurking in the shadows, waiting to catch up with me.

 

2 years ago my HbA1c was around 15 and that was the lowest it had ever been.

2 years ago I was in A&E again with DKA (diabetic ketoacidosis).

2 years ago I was diagnosed with stage 4 retinopathy and told I would lose my sight.

2 years ago I’d never met anyone else with diabetes.

2 years ago I regretted every single day that I hadn’t looked after myself and my diabetes.

 

But no more!

Today my HbA1c is 7.8

Today it has been 20 months since my last admission with DKA.

Today my retinopathy has halted in my left eye and is slowing in my right.

Today I’ve met amazing and inspiring people who have diabetes.

Today I still regret every single mistake that I made… but I hope others can learn from them.

“A dead end can never be a one way street; you can always turn around and take another road.”

It’s not easy… if it was then I wouldn’t have ignored it for such a long time. But for me, anything that I do on a daily basis for my diabetes has now become second nature. I barely think when I’m reaching into my bag for my blood glucose meter. I don’t flinch when I see a needle going into my skin anymore. Carb counting has become easier now that apps are available at the touch of a button. Appointments are something that I look forward to, because I get so much out of them. I lap up the information that I’m given by my consultant instead of just smiling and nodding like I used to. I ask questions constantly, I challenge methods of treatment and changes to my regime because I realise now just how precious my health is.

Now that I my health and my life back I want to make every option and opportunity work for me if I feel it’s right.

 

On top of daily diabetes management I study Monday - Friday, volunteer, work long evening and weekend shifts and involve myself with as many diabetes projects as I can… conferences, events, meetings, more volunteering, research projects, writing etc. Then I look at other people who also do so much on top of their daily diabetes lives and it makes me smile to think of what can be achieved and how diabetes doesn’t hold people back. It’s definitely worth the work and it really does pay off.

This blog is to demonstrate to anyone who is struggling that they can accept their diabetes and find a positive and healthy way to manage it. There is always a way out, there are always people to help and guide us, and there is always a light at the end of the tunnel. If I can do it then I think anyone can!

Hannah's story....

on the 26^th November I got an early Christmas present. For a long time me and Laura (aka ninjabetic) had been asking , ok more like annoying, our leader at diabetes uk to be allowed to attend the diabetes uk professional conference in March . on the 26^th Alex came back with some even better news - we were being invited to speak at it! So on the 14^th march me Alex and Laura will be speaking to hopefully a number of hcp about our work as young leaders and the use of social media. Frankly I’m a little scared about this but it did make me realise how far I’ve come in the past 2 years with some sheer determination, some great friends and a pretty awesome (and very patient) diabetes team.

2 years ago this month I was at rock bottom with my diabetes and self-confidence I was sat in the hospital with my a1c at 10.5 % I was on a very slippery slope with my diabetes. The way I was going I would have had severe complications by my 20s and wouldn’t of made my 40^th . I was doing maybe one bloodcount a day, was skipping injections and the injections I was doing I was guessing the dose of. All the locums I’d had previously had written me off as non compliant and didn’t even bother trying to get through to me .I’d had several scary hypos but nothing would get through to me every time my doctor or nurse would try to convince me to do things properly it would go in one ear and straight out the other. Then I got told if I didn’t sort myself out I wouldn’t make my 40^th suddenly the reality hit me that I needed to take care of my diabetes

2 years later I’m a young leader for diabetes uk mentoring teens and annoying , sorry advising , doctors on trying to improve care for type 1 whilst studying for my a levels in the hopes of being a children’s nurse. 2 years later I’ve met some of the most amazing friends I could of wished for and been given opportunities I could never of imagined when I was rebelling. i confess I don’t work anywhere near as hard as Laura does on ninjabetic because my blog was never set up to be a support site (I love that teens will come and talk to me though!) it was set up to provide a very unsugarcoated account of what it’s like to live with type 1 as a teenager, the good parts and the bad. 2 years on from my a1c of 10.5 im on an insulin pump testing  seven times a day with an average bg of 7.8 (just after exams it will get better) and with less hypos.

I’ve already been told that my team will be on the front row and also my pump rep.the fight for the insulin pump was something that took nearly 2 years and was so so worth the fight. I went from having to be completely obsessive over my diabetes to actually being able to relax a bit. It’s not perfect I can still have phases where I have 3 or 4 hypos a day or sometimes be hypo for up to 3 hours.  The pump gave me my life back and that may sound like an over exaggeration but it really isn’t for me. Before the pump I was spending every minute trying to control my volatile bloodcounts the pump has let me be a teen again.

4 years ago when I first heard about the professional conference I dreamt that I could speak at it speak about what its really like to be a teenager with type 1. I never thought I’d actually reach that dream , at the time it seemed so unrealistic  but with the help of diabetes uk I am gonna reach that goal. 

Every day is a diabetes school day

The lead up to Christmas, as always, is a hectic time. There’s so much to think about, organise, buy and prepare, and I always admire those people who do it with a smile on their face, never complaining and keeping up the Christmas spirit.  

The last two months were tough for me for a lot of different reasons. I was unwell for a few weeks which was the reason for me being away from blogging and tweeting for a while. It’s hard to find the energy when unwell and a rest can make all the difference.

Most of us know what it’s like to be ill with diabetes. It’s hard to just bounce back and recover fully or quickly. Blood sugars fluctuate, insulin doesn’t work as well as it usually does, frustrations are felt when checking blood sugars and seeing that yet again a dose of insulin hasn’t worked the way it should. Even taking extra insulin sometimes doesn’t make any difference and this just contributes to stress levels, and in turn, more messy readings!

Then there’s the worry about fluctuating blood sugars or running constantly high or low. 

“What is this doing to me that I can’t see?” “How will my next a1c improve when I can’t get at a level that I want for weeks on end?”

Then on top of that and at the back of my mind was; “Christmas is coming… food, drink, excitement, food, drink, excitement…” Surely this wouldn’t make my levels any better? So what did I do? I went to the #doc (diabetes online community) for help. On returning to twitter a few weeks ago I found that there was a 24/7 diabetes tweet chat using the hashtag #dailydtalk so I jumped in with a question; “Any advice for managing diabetes at xmas – overlapping food & insulin always makes me hypo”

Without fail I had a bunch of different responses from people sharing advice tips and stories about how they control their blood sugars to prevent hypos. I noted everything and thought of ways that I could adapt it to my day and regime.

Next I emailed my dietitian (the more info to prevent hypos the better) and asked the same question. As always I had a reply within an hour giving me tips and advice on how I could adjust to the change in eating and injecting.

Armed with lots of useful information and feeling fully recovered from the past few weeks I was ready to dive head first into Christmas day!

My first hypo was at 7am – I quickly treated it but had one of those horrible lingering headaches which I knew wouldn’t leave me for the rest of the day. No problem though, I didn’t expect to get it 100% right today or anywhere near that in fact as I’m never 100% right!

I had another hypo after lunch and another in the evening.

I wasn’t annoyed with myself for having hypos… I was still standing, smiling and laughing, I was just left feeling very tired from them. I’d taken all of the advice that was given to me on board, and even with a brilliant meter which tells me everything I need to know about my insulin and carb intake I still had three hypos.

Considering the fact that this time last year I probably would have tested my blood sugars once a month (if that), may have only had 1 injection a day (or sometimes none) out of the 5 I should have had, and had no idea what carb counting was, I think I did pretty darn well yesterday. On the day that people with diabetes want to kick back and relax we still need to stop and think about what we’re doing/eating.

It’s not a day off but a day to let ourselves off. To accept that things will go a bit haywire and to know we aren’t able to have perfect blood sugars all of the time, but that doesn’t mean we’re bad at our diabetes management.

I always say that every day’s a school day with diabetes and I think I’ll be saying that until my last day! I will never be an A* student in my condition because that’s not how it works. I will never get perfect results and I would never expect anyone else to either, because I know how hard that is. I’m not an expert and I don’t pretend to be, people who talk to me can see that and I think they respect that. I’m realistic and accepting in my diabetes, I’ve lived with it for 11 years and I know my body inside out now. I’m sure most people feel the same whether they have diabetes or help someone who does.  

We should all be proud of what we do on a daily basis. We work as a pancreas 24/7 and that takes a lot of effort, education and guts! I’m proud of myself… and I respect admire and support anyone else who is brave enough to take on diabetes.

Ninjabetic x

November - diabetes awareness month

November really has been an amazing Diabetes month! I haven't stopped at all and I've loved every minute of it, as I'm sure we all have!

Firstly I attended another Young Leaders meeting at Diabetes UK head quarters. This was our third meeting and I can really feel the progress that's being made. It's clear that a lot of work has been put in since we last met at the Big Event during the summer. This hard work is down to the wonderful Alex and Matt who keep us in the loop and keep us on our toes. The group will officially kick off next year and I'm sure that we will be making a big splash in the world of diabetes... for now though... my lips are sealed about our plans.

Next on my diabetes agenda was to write two guest blogs. One was for Timesulin about what World Diabetes Day means to me and why I feel it is so important. I was really pleased when I was asked to do this, I know that Timesulin has made a big difference to many people's diabetes self management, also the team are absolutely lovely and do a lot to raise awareness for diabetes! I love to give back to the people who I feel really and truly want to help people with their diabetes, and I get this feeling every time I speak to one of their team.

Blog number two was for Diabeto device who are the makers of my favourite little blue birdie diabetes accessory. I regularly interact with one of the creators and was really happy when he asked me to write for them. I was told that I could choose any diabetes topic I liked ,so I went with Blood Glucose Monitors. I chose my Accu-check Expert as I'd just found out that my HbA1c result had improved and I feel that I owe a lot to my meter.

Next up was a biggie for me! I was honoured to be asked by Diabetes UK if I would like to write about my diagnosis for the Independent which would be published on World Diabetes Day!

What an amazing opportunity to have a bigger voice to raise awareness for Type 1 diabetes! The article that I wrote was in support of the Diabetes UK 4ts campaign which is something that is very close to my heart. After a traumatic diagnosis I'll do anything I can to prevent that from happening to someone else. This is why I support their campaign and why I included it in the article... the message is simple but so strong. This campaign wasn't just for World Diabetes Day or for November, but it's for every day until a cure has been found!

Finally I travelled to Animas head quarters on World Diabetes Day to meet with their team and take part in talks and focus groups. I met with my lovely friend @Superbetic_T1 and the mysterious @grumpy_pumper (who I caught smiling at least twice throughout the day!) We listened to inspirational talks from teams of Type 1s who had swum the channel and @Superbetic_T1 told us about how he's recently climbed Mount Kilimanjaro despite only being diagnosed a few months before!

At lunch I thrilled (bored really) Fred Gill with stories of why I want to become a Diabetes Specialist Nurse. I was completely unaware of who he was and was a little embarrassed when I found out that he rows for Great Britain. He was actually there to give us a talk about his experience of diagnosis and adapting, but sadly he had to listen to me nattering away before hand!

The whole animas team came together at the end of the day for a walk around the offices, all dressed in blue, to celebrate World Diabetes Day together. At the end, Simon (regional sales manager for animas), took the mic (for what I was hoping was the start of a karaoke session) and thanked us all for our support!

It was a good day and every time I checked twitter or facebook I saw the words World Diabetes Day plastered everywhere. I could tell that people were making a massive difference in any way that I could... articles, post card exchanges, photos, events, talks, fundraising, blogs... anything and everything!

May the amazing work support and awareness carry on into the future until the cure is found!