Dear Doctor

Dear Doctor,

I don’t know if you’ll remember me, we met 13 years ago in your GP surgery. You were the first Health Care Professional that I had spoken to in the UK following my diagnosis in Paris. You had a kind face and you were friendly and welcoming... (cont) 

7 Day Diabetes Service

Diabetes patients in Portsmouth had good news this week as the diabetes department has finally been given the green light to have a 7 day service. What will this look like on paper? How exactly will this be done? At the moment I don’t know, but what I do know is that patient safely will be improved, therefore improving the overall quality of the patient experience.

Reflecting back over past experiences of inpatient care I would say that they have been… variable. I have, unfortunately, suffered from DKA (Diabetic Ketoacidosis – A dangerous and potentially life threatening complication) in the past, despite my best efforts to fend it off, resulting in hospital admissions. Some experiences of inpatient care have been smooth and some less so. Of late, as more and more people are using insulin pumps to manage their diabetes, I’ve heard people talking about fear and uncertainty over hospital admissions, not only from patient's but also hospital staff.

In the media recently, the case of Gillian Astbury has come to light and has highlighted the unacceptable standards of basic care in Stafford Hospital that resulted in Gillian’s unnecessary death. For those who don’t know, Gillian died at the age of 66 in 2007 due to nursing staff failing to administer her insulin. Gillian went into a coma as a result of prolonged high blood glucose levels and sadly passed away.

How Gillian must have felt being so poorly with such high blood sugars makes me feel incredibly sad. As someone who’s suffered from DKA I can relate in some way to the terribly uncomfortable, sometimes painful, feeling that it brings, the unquenchable thirst that is sustained by not being able to keep fluids down, and the utter exhaustion the patient feels as their body is drained from energy, leaving them wanting to do nothing but sleep.

What makes me feel even sadder when I think about Gillian is how quickly a patient can feel better when they are given the correct care for their diabetes. Insulin – that is what’s needed when a person’s blood glucose level is high – and it astounds me that, for whatever reason (though there is NO acceptable reason), insulin wasn't given to Gillian. When I’ve been in hospital with high blood glucose levels before it’s almost as if I can feel minute by minute the affect that insulin is having, and at that time there is no better feeling in the world as relief washes through you.  

As I mentioned above, my care has been variable. Two examples that stand out to me are; being admitted to hospital and being attached to a sliding scale that was delivering a large amount of insulin, whilst still being connected to my insulin pump, resulting in my blood glucose levels dropping dangerously low. It wasn’t until my diabetes team arrived on Monday morning that anything was done. The second example was being refused a sliding scale on admission, resulting in me being in DKA for 12 hours until, again, my diabetes consultant arrived the next morning. Note that my diabetes team played an integral part in my care improving.

These experiences started my involvement in advocating for 24/7 care and 7 day services. 

Firstly I addressed the issues, face-to-face, when I was asked at the Portsmouth Type 1 Diabetes Conference (The Sweet Meet) what I wanted from my diabetes team.

“Patient safety for all diabetes inpatient's and a 7 day service.”

I couldn’t even articulate what this service would look like because at the time I was still incredibly frustrated at what I’d experienced.

The next step was to make some more contacts. NHS IQ (NHS Improving Quality) were my first port of call and I was invited to a 7 day service conference in which I was given the opportunity to talk about my experiences to a room full of Health Care Professionals, Commissioners, patients and also Sir Robert Francis’ team. It didn’t stop there – I gathered information from other Trusts about how they were delivering a 7 day service in some departments and passed it to providers at my hospital.

Next up was to address the issue with those who would play an essential part in improving patient safety. I wrote to the CEO of my hospital, the chief of medicine, the heads of the departments where I was admitted and my diabetes team. They each had copies of my experience and soon enough I received a long and positive reply from the CEO. Perhaps I should have gone through the system and gone to PALS, but Diabetic Ketoacidosis can kill in a matter of hours – Do we always have time to go through the system?

And finally… This week, over twitter, I heard the news that Portsmouth Hospital Diabetes team have been given the thumbs up to have a 7 day service. I know that a lot of hard work must have gone into this service becoming a reality and I know the hard work won’t end there as the DSN’s deliver it. As awful as my experiences were, I was lucky enough to get through them and maybe help in some way towards this service. However, it’s a sad fact that it came to patient safety being compromised to make this happen, and that patient’s need to go through so many different channels just to feel safe and to be cared for in an appropriate way. It’s also an incredibly sad fact that, in the case of Gillian, it took someone losing their life for diabetes to be respected.

RIP Gillian x    

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

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 

Support like no other

I've been meaning to write a blog about support for a while now. I've written about how we support each other and how HCPs support us, but sometimes we take for granted the people who are there for us on a daily basis, living with us throughout our diabetes.

After being diagnosed at 16, I've had a rocky ten years. Hiding from and ignoring my diabetes meant that my family had no idea what I was going through....what I was hiding from them. My mum has never had to inject me or test my blood sugars and has only needed to treat two of my hypos. When she asked about my control or my regime, I would avoid her questions and carry on naively hiding. I wouldn't let my family support me because I wouldn't support myself. Having said that, they have always been there for me when I needed them the most.

Twice a year my mum and stepdad would drive me to A&E because I had let meself get to the DKA stage, every six months like clockwork. My mum would sit by my bed and hold my hand as blood gas tests were done, being brave for both of us because I was too exhausted to keep up the charade. She would phone me, bring me books, call work for me and make sure I had everything I needed, until I took over and told her that everything was fine again. For the next six months she could rest and I wouldn't worry her until I couldn't cope, and it would happen again.

My brothers have also been my rocks, like giant leaning posts who would take the strain for me when was too weak and when I would let them help. Now that I have started to accept my diabetes I have begun to let my family support me, and have seen how other families do the same.

From using the online diabetes community I have spoken to some amazing people with diabetes, as well as their families and friends. I regularly read posts from parents who stay up late to see if a correction has worked, trying to decide on a snack which will keep their childs blood glucose at a steady level through the night, worrying about their newly diagnosed child and looking for support and reasurance anywhere they can find it. One lady who I speak to on twitter told me that she would give anything to swap places with her son, and that it breaks her heart when she see's him unwell. I have tears in my eyes sometimes reading her posts and knowing that families are doing anything and everything that they can to find a cure for diabetes.

Today I was speaking with a lady who has type 1 diabetes and we were discussing how parents manage. She said that her mum's attitude has given her a postive outlook on life with diabetes. She told me that her mum would see in her eyes that her blood sugars were dropping, give her two digestives and then she would be off out to play again. This wonderful lady has had diabetes for 48 years, still uses insulin pens and is a mum of two.

I'm struggling to find a word which will describe families who support people with diabetes. Heroes springs to mind.... Dealing with family life, work life, social lives and diabetes life. Selflessly testing blood sugars, adjusting insulin doses, carb counting, teaching, attending appointments and being one step ahead for when we can't be, all the while staying positive and passing on this attitude to us.

I don't know where I would be if it wasn't for my family, and though I felt that I was protecting them from what I was experiencing, I have always known that their support was there. Whether it's from my mum telling me she was proud, or my brothers phoning to say hi when I'd only seen them the day before.... Their subtle ways of showing that they care means the world to me and I couldn't for ask for any more.

Ninjabetic

A mother's anthem - I am the mother of a diabetic child.

 

Festival fun time tips

As festival season is fast approaching I thought it would be a good idea to share some tips and tricks with you all, so that you can stay safe while having fun!

I needed a bit of expert advice from a certain pro in case I started dishing out nonsense, but I had to be sneaky... I had to become The Ninja!

Without wanting to raise suspicion as to what I was doing, I planned a covert operation in order to gather intelligence from a man who has some.

I believe that my subtle questioning worked, as I left with the information that I needed. However having to awkwardly approach tip 23 means that I can no longer look this hcp in the eye.... But I did it for you guys!

So check out the tips and links and feel free to add your own in the comments box at the end of the blog. Happy festivaling guys!!

• Download a site map before you go
• Choose a tent that you will recognise - bright funky colours and patterns etc
• Buy a solar charger for your phone
• Make yourself familiar with the first aid/welfare/meeting area as soon as you get there
• Where possible on arrival and when departing, try to stay to the side or maybe arrive and leave a little later to avoid the crowds. Especially important when departing due to the smell of unwashed festival friends
• Money money and more money (this is when parents come in handy!)
• Food glorious food! (There are always shops nearby, just jump on a bus and stock up.)
• Make plans in case you lose your mates, your funky tent, your parents money etc
• Set reminders on your phone to test your sugars and take your insulin
• Most first aid points are happy to store medication which needs refrigerating, but take a cool pack just in case
• Also take a doctors note with your prescribed medication on it
• Take ID with you and wear a MediAlert or something similar. That way if you do have a hypo, people will be able to help you and not assume that you've just had one too many
• Stock up on hypo treatments and keep some with you at all times
• Insulin - If on pens then talk to your diabetes team about splitting your long acting insulin (half in the morning and half at night) it in case you do accidentally forget to take it, that way you will have some protection. Check with your doctor before doing this though - just give them a call
• Take back-up disposable insulin pens in case your pump or other pens get damaged in a mosh pit
• Stay away from people with unnecessarily large spikes in their hair if you do get dragged into a mosh pit
• All festivals run an on-site hospital staffed by doctors and nurses, and also include pharmacy's. These aren't NHS pharmacy's though and will charge for medication, so get a receipt and claim your parents money back for you to spend at a later date
• Take adequate supplies as the on-site pharmacy may not have a huge amount of stock
• Don't inject, change pump sets or test your blood sugars in the toilets - use the family areas or the site hospital
• Think about your parents, they do worry (no matter how old you are) so give them a text every day to let them know that you're ok and that their money is being well spent!
• Don't drink anything that you haven't opened yourself or that you have let out of your sight
• Wear sun cream, drink plenty of water and stay out of the sun when possible (remember - heat affects insulin and may cause it to go off and it also affects insulin absorption and can cause hypos)
• Lastly....please use condoms (unless you want to call your child "Download" or "Reading and Leeds Fest") - get them for free from your GP or GUM clinic (unfortunately they don't give out JLS branded there)
• Oh and bulk buy baby wipes (you'll need them, trust me)

http://blogs.diabetes.org.uk/?p=2103

http://www.powerbee.co.uk/solar-phone-chargers.html 

http://www.friouk.com/ 

http://www.stickmedesigns.org/

https://www.facebook.com/pages/Wowbands-funky-and-affordable-medical-ID/206583892689328?ref=pb

(you may want to send these links to your £ parents £)

Ninjabetic