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 

Hypo - The Hunger Games

The Hunger Games - A yearly event for two tributes to fight for survival, but also as a reminder to the country of Panem not to rebel. Surviving, however, takes strategy planning and knowledge of ones limits.

Trying to describe the feeling of hypoglycemia to a person who doesn't have diabetes is quite difficult. No hypo is ever the same... sometimes different symptoms occur, some come on rapidly and others are gradual, some take more time and effort to treat than others, some make a person laugh and others make them cry.

I feel my most considerable frustration by far while having a hypo is the feeling of urgency to treat it and to return to the normal state that I was in before it happened.

These are my hypo symptoms:

• Flashing white lights around the edges of my eyes
• Double vision
• Feeling faint/drunk/weak
• Pounding heart
• Feeling hot and sweaty
• Shortness of breath
• Tingling mouth arms and hands
• Confusion
• Incoherent
• Aggressive/moody
• Extreme hunger

Imagine feeling those 11 symptoms all at once within a few minutes, out of nowhere they all hit you at the same time without you expecting it. They could sneak up on you while at work, driving, looking after children, in the gym, in a club, while asleep etc. Imagine if that happened more than once a week... more than once a day even! You eat to make the those symptoms stop, but nothing happens so you eat more. You wait but you start to feel weaker and are quickly reaching the stage where you can't help yourself, and eventually everything starts to look a little bit darker as you slowly start to slip in and out of consciousness. It's a scary thought isn't it?

For years I thought that I was alone in over treating my hypos, but when I started speaking to others I saw that I was far from alone...

“I realize, for the first time, how very lonely I've been in the arena. How comforting the presence of another human being can be.”  - The Hunger Games.

As other people with diabetes will appreciate having a hypo is extremly confusing and abiding by the rules which our health care professional give can sometimes become impossible! My consultants have always told me that 15 grams of carbs will treat my hypos and if it doesn't then to repeat until all is well. I can't help but smile to myself when they tell me this because although it's true they don't understand that instinct takes over. The need to regain control is too strong to stick to the 15 gram rule and a lot of the time my body will overpower my brain and all rational thinking. Add to that the sometimes overwhelming and uncontrollable hunger which makes me feel like I haven't eaten for weeks and I have a recipe for... well... The Hunger Games - the fight to survive.

So yes it is very easy for people to tell us not to over treat a hypo but how easy is it for us to stop? Not easy at all is my answer and I think that a lot of people would agree with me. I know that over treating causes sudden spikes in sugar levels, that I'll need more insulin to cover the extra food which I ate, that it may cause my a1c to increase and that the next time I see my consultant he will point out straight away the days which I didn't take his advice. I know all of this, but at the time none of it matters. It's pushed to the back of my mind until the hypo has left me, and then I can tell myself that it won't happen again and that next time I MUST control that overwhelming urge to binge. Easier said than done, right?

A bad experience

If anyone has been through a particularly bad experience with hypoglycemia which resulted in an ambulance being called, a hospital admission or even just being unable to treat the hypo themselves then they will understand that those memories aren't easily forgotten. They serve as a good reminder that hypos are very dangerous and frightening, whether they last a for few minutes or a few hours. Nobody wants to repeat a bad experience, so if there is a way to treat a hypo quickly and prevent that reoccurrence then it becomes very easy to take the option to over treat.

"You can never tell what you will find in the arena. Say it's a gigantic cake” - The Hunger Games.

What if the "rules" don't work?

As I mentioned our HCPs tell us that 15 grams of carbs will treat a hypo and if not then to repeat this rule until it has. That's fair enough but what if levels are crashing so fast that we don't have time to think about how many carbs we're eating? What if we don't feel that we can wait for 10 minutes to see if our blood sugars have risen? What if we're so confused that we just grab anything and everything that is edible and close enough at the time? Living with diabetes means that we know better than anyone how our body feels and how it reacts to hypos. We know whether or not our sugars are coming back up or if they're plummeting even further and we treat our diabetes accordingly.

I do understand that unless HCPs themselves have diabetes then they can only do their best, teach us what they know and look out for us as much as they possibly can. However we can also do our best and teach them what we know... We're all healers in this together.

“My mother says healers are born, not made.”  - The Hunger Games.

I woke up this morning fully clothed, surrounded by test strips, dextrose tablets and half a packet of kit-kat's. Last night my sugar levels dropped to 3.1 so as usual I tried the 15 gram rule (three times) and 50 minutes later I had crashed to 1.9 From 9pm - 11pm my sugars danced between 1.9 and 4.1 and I still tried to suppress the urge to eat more than 15 grams of carbs every 10 minutes. This left me in tears, unable to move from the floor, not making any sense at all as I sobbed about random troubles, I was unable to test my own blood sugars, and I was told this morning that I'd turned on my hair straighteners and left them lying on my carpet (the last time I had a severe hypo I managed to turn on 8 gas rings on my oven just before hitting my head and knocking myself unscoucious - luckily I was found quickly!) Eventually I gave in and let my body take over from the consultant's rational and wise voice in my head. I ate as much as I possibly could and didn't think about the consequences of having a rebound high. I felt that sticking to the 15 gram rule would have bigger consequences for me then not giving my body what it was telling me it needed. I don't remember much... but managed to avoid calling 999. My last blood sugar test showed I had dropped again to 2.7 after which I must have fallen asleep; luckily I had eaten enough to wake up this morning.

Exercise - Help or Hindrance

Last nights experience brings me nicely on to the topic of exercise. The only explanation that I can think of for my hypo and the reason I couldn't bring my sugar levels up is because of my workout 3 hours earlier. I made sure that I ate before the hand and tested my blood sugars before going in. I tested as soon as I left and ate when I got home. Admittedly I didn't have a huge meal but I had eaten throughout the day and I'd taken the correct amount of insulin for what I was eating that evening, minus 10% for exercise.

I find that exercise is very much trial and error and I don't know about others but I'm constantly told the reasons for why I should exercise, however I don't know how to manage it with my diabetes. Yes the majority of the time having a workout is fantastic for my blood sugars it gets them to a good level and seems to sustain them throughout the day. But then there are the odd occasions when it all goes to pot and that lovely hours exercise is spoiled by glugging coke or eating chocolate afterwards. Sometimes I feel like I'm going round and round in circles and it shouldn't be like that.

I know that there are courses which give advice on combining diabetes and exercise, however I feel that generic advice doesn't always work and that sticking to a "one size fits all" outlook needs to be expanded to a much more tailor made approach for individuals.

I've also noticed that when exercise and diabetes are used together in the same sentence whether this is online, in articles, in reports, in educational material, by spoken word etc, type one diabetes rarely comes into the equation and type two diabetes is very much a predominant focus. I can't help but feel a little isolated when I see and hear this, and as much as I hate to say it, I feel quite forgotten by the health care world in this instance.

“Destroying things is much easier than making them.” - The Hunger Games.

We need to know how to manage exercise properly to stop this from happening. If I'm constantly eating after exercise to treat a hypo which counteracts my productive workout then saying "what's the point?" may turn into "I'd like to cancel my gym membership please."

However...

I realise that not all hypos are like this and that it certainly isn't all doom and gloom! I joke that having a hypo is a good reason to eat chocolate or biscuits and to have food which is a nice little treat... to treat the low levels! A lot of the time hypos can be caught quickly and treated quickly making our lives that little bit easier. We know our individual signs and symptoms and we know that the majority of the time the 15 gram carb rule does apply. We know that mostly we can control that urge to over treat and that the hypo feeling will pass.

I also know that should these overwhelming feelings arise then there are ways to balance it with extra insulin for the food which I ate, testing blood sugars to catch a rebound high and eating carb free or low carb food if I do feel the need for more.

I am scared and feeling uneasy at the moment, these things take time to get over, but I know that I will get over them eventually. It's not the end of the world if this happens, it's just a little bit more work... one more fight to survive the diabetes games.

“Here's some advice. Stay alive.” - Suzanne Collins, The Hunger Games.

Ninjabetic x 

50 Shades Of DKA

I'm sure that many people have read or heard of the novel 50 Shades Of Grey... If you haven't then here's a very short summary (close your eyes if you don't want to know what happens).

Girl meets guy... guy is dangerous for girl... girl can see the danger but doesn't know how to stop... girl keeps going back for more...

When I think about DKA (diabetic ketoacidosis) that is how I see my experience, a dangerous pattern which sucked me in time and time again. DKA broke me so many times and in so many ways, and after I fixed myself and picked myself back up I would allow my diabetes to chip away at me until I was too weak to fight it again.

For those who haven't experienced or don't know what DKA is here's a short blurb to explain more...

"Diabetic Ketoacidosis occurs when the body cannot use sugar (glucose) as a fuel source because there is little or no insulin. Fat is used as fuel instead. As fats are broken down, acids called ketones build up in the blood. In high levels, ketones are poisonous.

The signs and symptoms of DKA are: Deep rapid breathing, dry mouth, flushed face, nausea and vomiting, abdominal pain, decreased appetite, decreased consciousness, dulled senses, frequent urination and increased thirst."

Recently a fellow ninjabetic, Danie, experienced DKA for the first time since being diagnoses 15 years ago. Danie had been ill for a while and unfortunately this had lead to her being admitted to hospital with DKA. I remembered that we had briefly spoken 1-2 months ago about what it felt like to go through it and I hoped that she never would. I felt instant guilt at the fact that Danie had been through this terrible experience when she had taken measures to prevent it, yet I had openly exposed myself to it on a number of occasions.

In previous blogs I have explained that it was a 6 monthly occurrence for me... a bit of a routine in my diabetes life. The agonising pains and confusion, being unable to breathe or even walk were all quickly forgotten about within a few short weeks and the build up would start over again.

So the DKA was that guy... aggressive unstable and menacing. My problem was that I didn't know how to escape the vicious circle that I seemed to be trapped in, I didn't know how to stop. My consultants would visit me while I was in hospital and ask why it had happened. "I forgot to take my insulin" I would tell them innocently. "I promise I won't do it again" hoping that my big puppy dog eyes would work. They would then make me an appointment a few days later to discuss ways of preventing it and I would sit in that appointment completely numb with an invisible barrier around myself.

For me accepting help from someone who didn't understand and showing that I needed to lean on someone else was frightening! So frightening that I would put myself in a position which could have cost me my life.

The thing about DKA is that it isn't only the "there and then" that affects a person, it's the weeks and months after that creep up slowly and sometimes silently which need to be looked out for. It's all very well having an appointment after an admission but what happens to the person who feels unable to connect with their HCPs? What happens when GP and clinic appointments start to feel generic? What happens when the advice given seems to be turned out from a book with no feeling or empathy behind it? Is that when people start unknowingly and unwillingly going back for more?

I realise that most people who experience DKA do not purposely subject themselves to it. Was I naive and ignorant to go through it so many times? Was I selfish to add myself to the NHS statistics? Yes but at the same time was I scared and withdrawn because I thought that no one could help me? Did I feel like a lost cause because between those appointments I felt that I was alone and was struggling to cope? Yes again! There are always reasons for why these things happen and just because I wasn't shouting it from the rooftops and symptoms weren't always visible, that doesn't mean that it doesn't exist and shouldn't be addressed.

When my consultant suggested I start a diabetes forum I thought it would be great for me to share my experiences with other people and to prevent them from making the same mistakes that I have, but there was nothing that could be done for me. I had accepted that I was destined for another DKA in 6 months time but maybe I could stop others from having that same destiny. After going through 9 years of hospital admissions I feel like I've found the missing piece to the puzzle! I had no idea that the diabetes online community would give me so much hope and positivity.

Recently another Ninjabetic, Hannah, told me that she'd had a dream that I was taken into hospital with DKA. I thought back to when that had last happened and realised that it was 15 months ago. When I spoke to Danie about her admission I said that it would be interesting to compare our outpatient care following an admission. Thinking about it has made me come to the conclusion that combined with the medical advice that I recieve,  speaking to people who completely understand is one of the most effective outpatient treatments that I could wish for. Every day that I'm speaking to people with diabetes and their famlies is another step away from putting my body and mind through another DKA and I can hopefully do the same for others.

I had an email from a young girl with type 1 diabetes recently saying that she wished I could be there to hold her hand in appointments because even though she is surrounded by HCPs constantly she still feels very alone and misunderstood. I know what she means, I really do, and I plan to email this blog to her as I know how she enjoys the 50 Shades trilogy... but also to remind her that after the second instalment (50 Shades Darker) comes the finale... 50 Shades Freed.

Ninjabetic

Food for thought

It has taken me a long time to write this blog. In fact it has taken the last 10 years, and if I'm honest I  think that my views and attitude towards food will change every day. I do want to say that what I have written here are my views and my experiences, and they may be a little confusing to read because they are still a little confusing to me.

See food to me is something which my life revolves around, and I know that a lot of people will say that it shouldn't, but I can't help it. It's everywhere I look, it's in everything I do and it's consciously or subconsciously on my mind all of the time. Food plays a central role in our lives - from birth we develop a deep association with food and emotions. We celebrate with it at weddings, birthdays, anniversaries, graduations, holidays, promotions etc.. and we also drown our sorrows with.

We all know how food will physically affect people with diabetes, but how will an individual use food according to their specific emotional state? Do we feed our diabetes and our emotions in a healthy way?

Before I was diagnosed with diabetes I was known in my family for being the dustbin. I would eat huge portions and never put on any weight. I've always been told that I was a fussy eater, but when I found something which I liked I could put Adam Richman (man vs food) to shame! Not anymore.... Now I have very mixed feelings towards food.

When a person with diabetes wants to eat they need to consider:

How big the portion is, how many carbs are in that portion, the fat content, the calories, which food group it belongs to, which foods we are eating it with (eg fruit as part of a meal or as a snack), if we need to split a dose of fast acting insulin and many more aspects.

For a lot of people this takes time and planning, but that's not the end of it.. We then:

• Prick our fingers to test our blood sugars
• Calculate an insulin dose based on how many carbs we are eating and what our blood sugar result was
• Check our blood sugars again 2-4 hours later
• Eat again/treat a hypo if we took too much insulin
• Take more insulin if we didn't have enough to cover the food
• Record information
• Adjust our insulin doses according to illness and physical activity

It's a massive amount of information to think about for something which should be so simple, and something that a lot of people take for granted. It's not just a quick injection or pushing a button on an insulin pump.. it's so much more than that. Now I find that I over think food, and how can I not? The way that I look at food is completely different to before I was diagnosed. There is so much detail that I didn't consider before, and looking at this detail every time I eat has affected the way that I feel towards food.

Does this have a positive or negative effect on relationships and emotions regarding food?

It's a mixture of the both for me and as I said earlier ths changes on a daily basis. If I have a healthy day with great blood sugars then that's something to celebrate (usually with more food)! If I have an unhealthy day but still have great blood sugars, then even better! This means that I'm getting calculations correct, that I'm understanding what my body needs and how it reacts. It makes me feel confident and motivated to carry on, pushing that little bit harder to explore my diabetes, to play with it and to understand what it needs!

However there is the flip side....

Has anybody ever felt guilty for eating.. whether you have diabetes or not? It seems silly doesn't it? We eat to survive, we eat when socialising, we eat for energy when exercising.... it's something which we need to do. So why is there a feeling of guilt?

"Are you allowed to eat that?"

I've lost count of the amount of times I've been asked this, and along with "are you the type who needs sugar or has too much?" I can't help but put my head in my hands at this question. I don't blame people for asking this because as we all know people aren't being educated about type 1 diabetes as much as they could be. I'm pleased that people are taking an interest and I know deep down that they're only asking because they worry about me.

However I also can't help the nagging feeling of guilt when I do "eat that". The majority of the time I will carry on, eat the big yummy treat and say; "Yep, I can eat what I want as long as I take my insulin to cover it." Though there are times when inside I'm saying to myself; "Should I be eating this? What will people think if I do?" and I already know the answer. I can eat anything in moderation using the skills that my HCPs have taught me.

Another factor which has greatly influenced the choices I make when eating is how type 1 diabetes is portrayed in the media. I don't need to tell anyone that dramatic and shocking news sells, and it sells well. The media wants to spark a reaction out of people, to gather interest and to keep their audience coming back for more. That stigma which is placed on people with type 1 diabetes as being overweight, unhealthy and making the wrong lifestyle choices has only fueled the guilt that I feel, and my feelings of

frustration towards food. On top that, advertising will barrage us with images and messages about how we can achieve beauty, a desirable physique and the perfect lifestyle.

I admit that I have turned food down before because I've worried about what people would think, and because I didn't want to be judged as a stereotype which is wrongly shown time and time again.

It was a horrible feeling to battle with myself over something which I do every day, which I need to do every day. I suppose at the time I felt that I was letting myself down by saying no to something that I wanted. It was also my chance to educate the people around me as to why I can eat the same food that they can, but I just gave up through that frustration and guilt. On one hand there's the food intake and on the other there's the emotional consequence. Luckily now the food intake is starting to out-weigh the emotional side for me, thanks to the help of my dietitian.

I had never seen a dietitian until this time last year and I know that those appointments have made a huge impact towards me turning my life with diabetes around. My dietitian, Sue, is one of the biggest influences in my treatment because she makes going to my clinic enjoyable as well as educational! She's taught me everything I know about carb counting, corrective insulin doses, why my blood sugars do what they do, how food affects my blood sugars etc, and on top of that she always takes the time to talk about me. She remembers what I tell her about my personal life, my work and even laughs at my terrible jokes! Sue doesn't judge me for my eating habits and the choices I make, she doesn't even mention them, but she guides me in a way which allows me to help myself.

So that's what I've been doing for the past few months. Looking at different situations, taking a step back and thinking for myself about how I can make them work for me. Take eating out for example (and I mean anywhere apart from home).. I used to dread this but at the same time get excited about getting away from the mundane diet which I've created for myself. I'm such a pain when I eat out because although I'm not a vegetarian anymore, I rarely eat meat and if I do I only eat chicken. I don't try anything new (I shocked someone at work last week by announcing that I've never had steak or mushrooms before) but it doesn't mean that I don't enjoy food!

I do enjoy food, I just don't enjoy the worry I sometimes placed in front of it. It's like I have a side dish of worry, that's the best way to explain it. I'm not only worrying about what people think if they see me munching on chips cheese and mayonnaise (my favourite!), but also about what it will do to my blood sugars. It's very difficult to correctly carb count when eating out as very few places show carb amounts on their menu. Luckily there are hundreds of people on social networking sites who will be abe to tell me within minutes the correct carb amount. But what if they weren't there? What if I didn't have my carb counting app? It would be a guessing game, which I don't want to do. What do other people do when they are in the same situation? Do they have a side plate of worry too?

Sadly I don't think that I'm the only one who has been through this. I can see it in the way that other people blog, their tweets, their facebook status' and comments, and I can see myself in those words. I can see it in the messages that people send me and I just wish there was more that could be done to help them.

I've coped on my own for 10 years for many different reasons, but during that time I didn't recognise that my behaviours were changing. It really did sneak up on me and it wasn't until complications had set in that I actually did something about it. I think that the best way to overcome this is to consider how food will support my diabetes and rethink any poor philosophies, as well as reconstructing my attitude e.g - I used to have a theory a long time ago that no carbs = no diabetes. I know that having a positive attitude will play a big part in correctly treating a problem, and once there is a self-belief then tackling the difficulties with food will become easier to manage.

I intend to get that positive attitude and belief by sharing my worries and fears, and I hope that I can help people along the
way.. and maybe a few others will join me as well.

Ninjabetic

The emotional rollercoaster

Everyone has had one of those days or weeks where they feel that nothing is going their way, that what they do just isn't enough and they feel like giving up. We all go through it and the majority of the time we look back and say "what was all the fuss about"?

When we can see that a friend or colleague is having a tough time we do what we can to support them and make their life that little bit easier. We asses the situation and think of the solution.

How would you feel if that tough time or bad day was on repeat, maybe not all of the time, but enough that it starts to have an effect on your health? How would you feel if you had been diagnosed with a chronic condition which would alter your life and at times become overwhelming? How would you feel if you had no one to turn to and the only option was to cope on your own? Most people reading this will be able to relate in some way, whether they have diabetes or care for someone who does. At some point support will be needed, but it needs to be available.

When it comes to diabetes, support can be a tricky area to discuss. Sometimes it can be difficult to admit that emotional support is needed. Maybe it isn't clear that it's avaliable. We may require more help than what has been offered. We may worry that we are becoming a burden on our HCPs or feel that we are letting ourselves down by accepting help.

When my consultant and I started discussing the idea of ninjabetic, I obviously thought that it would be great. But I also thought, why hasn't this been offered before? If support has not been offered to me, then how many other people are missing out on it? Or had I just fallen through the system and become lost on the list? Have other people been craving support like I was, but haven't received it for whatever reason?

On Tuesday night, after a day of battling with my blood sugars and a stomach bug, I was about to give up and go to bed when my inbox pinged. The first thing I noticed was the name, someone who I knew but we hadn't spoken for over a year. Then next to it in the subject box - 'can I be a ninjabetic too'. The email was from one of my consultant's patients telling me that she had been diagnosed at 16 as well, and that she had learnt a lot from my blogs. I sent one back to say thanks and that we had actually met a few times before, but I wasn't a ninjabetic at the time. She replied saying that she did remember me and she had no idea that I had diabetes. She also said that she feels more in the 'diabetic loop' now, which did make me smile!

So we had hung out before, chatted and had mutual friends but neither of us knew that the other had diabetes. We go to the same hospital, have the same consultant, live in the same area but had been introduced in completely different circumstances. I've found myself wondering if things may have been different for me if I had been introduced someone else who had diabetes in my earlier years, or if I'd had emotional support offered to me.

Don't get me wrong, my consultant's nurse's and dietitian's are great (most people know how much I rate them), and there is only so much they can do when they see a patient twice a year for a check up. But when they see that a patient is avoiding appointments, hasn't had a blood test in years and has non-compliant practically stamped on their forehead, shouldn't alarm bells start ringing? If GPs can see that blood sugars are unstable, prescriptions for insulin and test strips aren't being ordered for months and infections are becoming more frequant, why aren't conversations taking place as to why this is happening?

Then again, maybe they are taking place? But what can HCPs do if they can't recruit the essential help which not only us, but they are crying out for? They must be as frustrated as we are at the lack of psychological support available to us, yet our frustrations still aren't being recognised. I realise that yet again what we are lacking in our care is down to money, but in the long run surely this would be an investment?

I only started to take care of myself and my diabetes this time last year when complications set in. I don't blame anyone but myself for what has happened to me, but I can't help but think, what if?

I would hate for other people to get to the stage where they have made my mistakes and are thinking the same. There are so many ways in which this can be prevented and we all know that the benefits will be huge! If people are given the correct emotional support combined with education and the correct treatment then there is no reason for us not to self manage our diabetes, to save HCPs time, to save money on hospital admissions and to become role models for those who are starting out with their diabetes.

It would be fantastic to have a professional who can give us the time we need, to help us make sense of what is happening, to give our parents and siblings support as well and to listen and offer advice to get us through the tough times.

Peer support is also essential, at any age and any stage throughout diabetes. It costs nothing (I have demanded an ipad from my consultant, but he flat out refuses), and it can be so motivating and inspiring. I don't think that I would have gotten as far as I have without the people who I speak to every day via social media. But also when I met other people with diabetes at Diabetes UK last month, I realised what I had been missing out on. I got on the train to go home and I felt really down, but I didn't know why. Throughout the whole day I had been soaking up the experience of being with those people and suddenly my mood had flipped. But then I realised it was because I didn't want to say goodbye to them. I wanted to put them in my pocket and take them all home with me because I needed their company, not all of the time, but occasionally. Having support on the internet is amazing, but having a face to talk to, seeing someone nodding because they understand, that would really help too.

Yesterday I asked this question on twitter; "Were you offered counselling when diagnosed with diabetes? Have you been offered it since? Did or would it help with your diabetes?"

24 people replied to this question and out of the 24, only 1 person had been offered emotional support. I spoke to people with diabetes and parents and every single one of them said that it has been needed in the past, is needed now and they feel that it will lead to huge improvements in care and management if it is delivered. We are clearly aware of what we need and as we all know, there is strength in numbers. Patient power can go such a long way if you work with HCPs, who can in turn go to the higher powers, the one's who can make this happen, and say "this is what our patients want need and deserve".

Diabetes is not just about the illness, but the person. Diabetes is not a hospital number, it is not a twice yearly appointment, it is not a name on a clipboard at the foot of a hospital bed, it's a part of us for every second of the day and we control it. If we are supplied with what we need, then we can control it well. If we aren't then people may be left wondering....what if?

Ninjabetic x 

Stop bashing my Health Care Professionals….

I’m sure that we have all read in the papers at some point that diabetes care is not at the standard that it should be. That “Only half of NHS patients are receiving acceptable care” - The Independent. As people with diabetes we want to know why this is happening and what is being done about it! As soon as a story is published with any negativity it causes uproar throughout the diabetes community, and I for one admit that I’ve joined in before! It’s so easy to get caught up in it all, but we need to stop and think about how this negativity affects those who are trying their best to help us.

Do we really think that hcps aren’t trying? That they only put in half hearted efforts? That they spend years at medical school to not give everything they have to their patients?

I don’t have statistics or charts to show you all because none of that matters to me right now. I can feel in myself everyday that the work my hcps have put in is doing me the world of good and that is what is important to me.

We need to show that there isn’t just bad news out there, that diabetes care has come on leaps and bounds in the last few years and most of all we need to pull together as a team to support our hcps…. because where would we be if we didn’t have them? We need them, and I know that they do their absolute best to give us the care we deserve! So next time we see the papers bashing our hcps, please stop and think from every angle about where to place the blame.

I collected a few stories today from people who agree that hcps are wonderful people and they deserve a massive pat on the back for what they have done for us. Please read through them and add your own  story in the comments section at the bottom of the blog if you would like to contribute!

Jen said; “I'll always be thankful for my DSN teams through the years, especially the ones that said yes to be trained to do the DAFNE course. You guys are a big part of the reason I'm still alive today. Thank you also for helping my parents cope with their daughter's diagnosis at such a young age. I can fully appreciate that being healthcare professionals is never easy; trust the ignorant to make it all black and white when it's not.” - Jean, Belinda, Frank & Doctor Huston at James Paget University Hospitals NHS Foundation Trust.

 

Gemma said; “The team I work with in the Ulster hospital are very close knit and supportive they have seen me through pregnancy related diabetes, and followed my journey to where I am now. They have always supported my requests and always been full of encouragement even when things weren't going my way. They taught me that one bad sugar is not the end of the world. What matters is trying your best and living your life Best piece of advice - You are a person first and diabetic second, and that should never change.” - Ulster Hospital, Belfast.

Martyn said; “My diabetes team are my guardian angels. When I think of all the positive things that have come out of my diabetes, they're right there... it was my DSN who encouraged me to start volunteering for Diabetes UK, because she helps to organise weekends for children with diabete. If I have a question, about going to a music festival or even just how to deal with a cold, I know she's right there on the end of the phone or email if I need her. She, and the fantastic doctors at my clinic, worked to get me an insulin pump, and I'm so grateful, because it's given my diabetes a kick up the proverbial backside. Finally, I feel I should give a quick mention to my local doctor's surgery and pharmacy. 99% of the time, they put up with my constant prescription changes and requests, and they always get my repeat prescriptions sorted in about a day. So thanks, everyone, for keeping me alive and happy! You're alright really.” - Hospital: Princess Royal Hospital, Telford.

Hannah said; "my doctor for every moan i have about him is a truely brilliant doctor. i cannot put into words the grattitude i have to him for what he did. he never ever gave up on me at my worst and when he did get through to me and i changed he was there for advice and support every step of the way. him and my dsn are on the end of the phone of the computer if i need help, and my dr keeps a check through the dsn on all of us. not just is he a brilliant doctor in every way but i actually get on with him as a person, he doesn't make the appointment all about diabetes." - Fairfield General Hospital, Bury.

Leah said; "My son, aged 13 months, fell into a diabetic coma. He was transfered to Guys Hospital ICU and they were fantastic. Once he was out of the woods we were transfered to St Thomas Hospital, London, they were also amazing and so supportive. He was then moved back to our local hospital, Darenth Valley in Dartford, where his diabetic team have been fully supportive and helped me apply for the pump 6 years on. The regularly check in and help me. Our pump team, especially Ann from accucheck, have been amazing helping me overcome my fears and doing extra work training us. His diabetic paediatrician, Dr Gupta of Darenth Valley always refers to us as family and even comes to see my son whenever he is admited."

Ninjabetic (Me!); "Last year I was on a complete downward spiral when it came to my diabetes and I saw no way out. For me it was the end and nobody could change that. If I hadn't met my consultant then I am quite sure that I would not be writing this now. His enthusiasm and passion for diabetes and the commitment to his patients has inspired me to pull myself back. I honestly feel that I owe him my life and there are no words to thank him enough. He is completely dedicated to all of his patients and I know that he will always be there for me, whenever I need him. He deserves so much recognition for his hard work and dedication and I know that he will continue to improve the lives of people with diabetes in any way that he can. - Dr Partha Kar, Queen Alexandra Hospital, Cosham.

I'd just like to thank everyone for their stories and I hope you have all enjoyed reading this blog!

Ninjabetic

HbA1c - What a result

We've all heard of HbA1c right? The blood tests that give an average blood glucose reading of the previous 2-3 months. Fair enough, it needs to be done and it’s just one of those things that as people with diabetes we become accustomed to. We are being told that in an ideal world our results should come back at 48 mmol/mol –(6.5%) or below. However we all know we don’t live in an ideal world, we live in a world where it's complicated and many things will contribute to unstable blood sugars, which will in turn lead to our results not being quite where we are told they should be.

I know that different people have different feelings and opinions about this test. Recently though, through the wonders that are social media I have seen an article which has been reposted and retweeted many times, referring to the lack of communication when it comes to HbA1c results. Now this article wasn’t referring to patient/HCP communication, it was referring to patients not sharing results openly with peers and family. Their reasoning behind this is that there is a lack of encouragement, a lack of motivation and that during feedback discussions between patients and HCPs the emphasis was that “diabetics must do better.”

Unless you have diabetes its difficult to understand the anxiety felt just before getting the results. What if the result has not improved despite the work we have put in? What if our teams judge us as a result of a bad result? What if it’s still poor despite all my effort? How on earth can I do better?

Its difficult. A sense of being judged just doesn't help…..

I think that we all need to look at how we are working together and combine our knowledge to reach our goals. As people with diabetes we have access these fantastic people to help us make a difference not only to our HbA1c, but to every aspect of our diabetes, physically and emotionally!

I am of course referring to the wonderful people who dedicate their time and attention to caring for us and improving the lives of diabetics every day. Don’t think of the healthcare professionals as the experts though, you are the expert in your own condition and they are there to guide you and give you a little shove in the right direction. At the end of the day, the way that your care is delivered is very much down to you, which is why you must make sure that you are receiving the help and support that you deserve.

Take control of the situation, take control of the help and you will take control of your diabetes! It’s your health at the end of the day, no one else’s so why shouldn’t you be the boss? Take responsibility and set yourself goals to achieve the HbA1c that you know you can have. Share your goals with your healthcare team and explain how much help you want, when and where - and they will work with you to achieve them.

The mistake that I made for many years was to sit and listen, to be talked at but not talked to, to be given goals but not asked for any contribution and I would never ever talk back. I would accept what I was being told and even if I had questions, issues or problems I would never raise them. I was a voice that wouldn’t speak but a voice which had a lot to say.

The pros can sometimes be intimidating, they’re very clever people but think of it like this…. They wouldn’t be in their job if it wasn't for us. We essentially are the boss. Sure they would work in a different speciality but we all know that they absolutely love diabetes and wouldn’t swap it for the world! So for as long as we are keeping them in their jobs with our faulty pancreas’ they will work with us in the ways that we want them to.

The opportunity is there for you to be in charge so why not take it? See what an impact you can have on your next set of results. I’m sure that your healthcare team will encourage you to do this your own way, and you will be helping them out too! Just imagine how difficult it must be to try to identify with people on a daily basis when you have no idea what it is they are going through physically and emotionally. Text books, case studies, research, experiments, meetings and lectures can only teach so much, the rest is down to personal experience and the majority of healthcare practitioners don’t have that personal experience. But they are extremely knowledgeable and you will find that you will make a fantastic team if you both put in equal amounts of effort and share your knowledge of the subject.

Why not try it! Set yourself a HbA1c goal and share it next time and see what happens.

Ninjabetic