Boyfriend vs Insulin Pump

This week I interviewed (grilled) my other half about what he thinks of my insulin pump. 

Ninjabetic x 

Video - The Diabetes UK Professional Conference 2015

In this week's video I'm at the Diabetes UK Professional Conference and I talk about my experience of using the MiniMed640G and how SmartGuard worked to prevent hypos! 

Ninjabetic x 

Video - Hypoglycaemia prevention

In this video I talk about my experience of using the MiniMed 640G pump from Medtronic and how it's working to prevent my hypos. 

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 

Diabetes UK Young Leaders - The night before The Big Event

I had intended to write a blog about the Diabetes UK Big Event which was held on Saturday 14th July (2012) but unfortunately I didn't get to see much of it, so this would have been the extent of the blog (I'll write a mini one about the meeting soon). Instead I'm going to write about the social side of the event because the social element has now become an important part of my diabetes regime.

Friday 13th July (2012) was the date that the Diabetes UK Young Leaders had been given to reunite, to socialise, to welcome new faces and ideas and to prepare themselves for a productive meeting the next day.

The 20 Young Leaders are from the UK Ireland Scotland and Wales and are all between the ages of 17-30. The aim of the group is to lead young people with diabetes, to support them and to offer guidance. There is a gap in the service for young people at the moment and we want to fill that gap with ideas plans and action to create a better future.

The agenda for our day was going to be taken up mostly by meetings to discuss and finalise plans for the Young Leaders group. The setting was Warwick University where the Diabetes UK Big Event was taking place, it was the perfect setting for young people to meet.

Our "social meeting" was to begin (and end for me) in a bar named "The Mucky Duck" which we arrived at around 5:30pm. Too early I hear you say? Well so did I, but being the oldest I was shouted down and forced.. I mean literally dragged kicking and screaming into the bar! Once I had gotten over my utter shock of being manhandled I calmed down and soaked up the converstaions.

Obviously we all have our diabetes in common and chatting revolved around this to begin with.. What we eat, who has a pump, how our blood sugars are doing etc and I was lapping it all up! See this is something that I had never experienced throughout my 10 years of living with diabetes, until a few months ago when we all met for the first time. I realised when I had left the last meeting that this is what I had been craving all along! The people who completely understand what I'm going through. People who can give me advice and share tips and experiences. People who I can honestly and openly talk to about anything diabetes related because the chances are they've been through it themselves.

Friendships are powerful things and with a condition like diabetes I think they can be a massive influence in the way we take care of ourselves and they way we view life with diabetes.

So the conversations soon turned to football, which meant that I could move away from the guys and chat to Hannah who is quickly becoming like a little sister to me. We chatted away until the heavens opened up and we had to take shelter inside. Our next stop was a pit stop for fuel (food and insulin) at the student restaurant/bar.

This is a new experience for me as I've never eaten with other people who have diabetes before. We all picked from the menu and Hannah calculated my carb intake for me as I had no idea what it was. It was all very exciting and new as I usually eat in front of my computer at work, in front of my laptop at home or on the go when I'm rushing around! Sitting down to enjoy a meal with good friends was what I really needed. I actually enjoyed taking my time over the food and tasting it for what seemed like the first time in ages! Having that good experience and associating it with food is something which is lacking for me, so once again my diabetes friends have helped me more than they know!

After we had all had our fill we headed back to The Mucky Duck where the guys hovered around a young pretty barmaid and the girls sat and chatted. By this time there were a few additions to the group and we all mingled as much as we could. Unfortunately the guys were in what looked like a hypo trance around the pretty barmaid so I left them flexing their muscles to chat to Joe who manages the social media side for Diabetes UK. Working in social media and health care is my dream job so I bombarded him with questions about how he uses social media to interact with different people on a daily basis. I learnt so much and ideas kept popping into my head about how I could reach more people, help more people and make more of a difference. Another win for diabetes as I now had even more motivation thanks to all of this socialising!

As the clock started ticking closer to midnight I started to feel the early alarm I'd had and the long journey, so I made my excuses (being old was one of them) and headed for bed. Only 3 of us left early but I don't think my night could have been any better. I watched people laughing and joking with each other as I left and I was happy. I'd spent time in the company of some wonderful people and had even more to come the next day. Every time that I speak to someone about my diabetes I get inspired to make more of a difference to other people. I don't think that I would be where I am today if it wasn't for the great care that I receive at my hospital, but I know that I can maintain that with the diabetes friends who I speak to every day. They are just as important to me as my HCPs now, and for that I want to say thank you to everyone.

Ninjabetic x

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

Laughter is the best medicine

This week has been very up and down for the diabetes world, there certainly were highs and lows and I’m not talking about blood sugars for once! My twitter account almost exploded on a number of occasions, and I think my boss sacked me four times for tweeting while “on the job.”

We saw type 1 diabetes having its day in parliament, as 60 adults and children with type 1 diabetes had their chance to tell MP’s of the experiences issues and challenges they had faced since being diagnosed. Their aim was to secure government funding into type 1 medical research and to push the type 1 agenda up the political ladder. I saw from the tweets and pictures what a fantastic job everyone did and I was proud that they were representing type 1’s for our country!

That was the high, and what a massive high it was!

However, as with our blood sugars that high came down, unfortunately dipping to a very deep low. I won’t dwell on this too much, as I’m sure you all know what I’m going to say next. Yes the press decided to declare to the nation that diabetics are single handedly going to bankrupt the NHS. I’m sure we’re also responsible for the fact that dodo’s are now extinct, but like I said I won’t dwell on it.

Instead I want to make you all smile a little, because as they say….laughter is the best medicine! Over the weekend I have been sent stories about amusing hypo incidents from my twitter and Facebook buddies. Obviously hypos are very serious and very frustrating for us, however they can lead to some hilarious tales which I will now share with you.

I haven’t named names, they aren’t all mine and yes it is ok to laugh….

“My 1.5 year old son seeing me lying on the landing with no bodily control drew all over me with a pen. I was awake at the time but couldn’t move to stop him.”

“I once ate a cake wrapper (cake included)”

“Whilst on a walk in a forest I tried to genuinely hide from my wife behind a very thin tree. Unsurprisingly she spotted me!”

“I wondered into my dads study (which used to be my bedroom) only wearing my underwear asking why he had moved my bed.”

“I once ate dog chocolate drops that I found in a cupboard.”

“I punched a teacher and then told him to f*$% off.”

“My brother in law (while having a hypo) told my mother how attractive she is and what a great pair of t*%$ she has – He didn’t remember after.”

“I told someone that I couldn’t go out that night because I was washing my dog. I meant to say my hair obviously.”

“My husband had a very bad hypo and as I was calling 999 he opened his eyes, looked right at me, and projectile vomited right in my face! He had warned me about the symptoms, except for being sick!”

“I punched a paramedic in the face for giving me hypo stop.”

"An old pal of mine said that I bit him on the elbow once while having a hypo."

"I woke my dad up to tell him that I wasn't going to play for Arsenal anymore."

I hope that has cheered everyone up on this wet and windy evening! It’s not all doom and gloom after all!

Ninjabetic

Diagnosis Day

Firstly I do apologise that my blogs aren’t in chronological order, my last blog would have been old news if I had posted it any later though. To be honest though, none of these will be in any sort of order, because diabetes doesn’t do organisation. It doesn’t play ball, no matter how much you want/need it to.

I think of it as trying to push to ends of a magnet together….you push to connect to it, and it moves in the opposite direction. You push harder holding the other magnet and you do eventually connect, but it’s not a perfect match. I sound terribly negative there but there’s no denying that it’s a bloody pain! However one day the wrong end will turn around and everything will fall into place. You’ll see….

So this is the story of my diagnosis day, the day that changed me. It changed my family, my habits, my behaviour, my attitude and my whole outlook on life. This day weakened me on the inside but toughened me up on the outside, this day broke an unbreakable bond and taught me how to build barriers, it changed me physically and changed me emotionally but most importantly….it has made me the person that I am today and I’m proud of that! Please don't think that I'm being negative because I'm really not. Diabetes makes people strong and realise what is really important in life.

If I could talk to my 16 year old self now I would say “hang on in there and don’t give up, fight it and win.” If I could send a message to anyone who is newly diagnosed it would be exactly that.

June 2002 – Disney Land Paris

I had been looking forward to this holiday for months! I was going to Disney Land Paris with my mum step dad and younger brother after weeks of stressful GCSE exams and months of revision! However this holiday did not go to plan. Memories would be made, but they wouldn’t be magical. I would also be put off cabbage for a very long time.

It was so hot there and the heat was dehydrating me so much! I could not quench my thirst and all I wanted to do was to go home, lie in a cool room with some ice cold water and sleep. I had barely eaten a thing all week and was loosing weight very rapidly. I had no energy at all and was making any excuse I could to miss the rides and parades so that I could go back to my hotel room. Little did I know that every sip of coke that I thought was quenching my thirst was making it 100 times worse. That my body had been slowly giving up for weeks and now was the time for it to finally let go.

That’s all I remember….the thirst, the heat, the tiredness, the confusion and the pain, all on repeat, all day every day. I’ve seen holiday photos since and none of it jogs my memory. I was there in body (just about) but not in mind. I do however remember the last day very well. Four hours before we were due to get on the Euro Star to make our way home I passed out in my hotel room. A doctor was called and he told me that I had food poisoning and that I would feel slightly under the weather for a day or two. Two hours after that and I was begging my mum to take me down to the bar so that I could get a bottle of water. She was almost carrying me because I was so weak I couldn’t walk. She said later that people were staring at me because I looked so ill skinny and gaunt, with big dark circles under my eyes.

It was as soon as I reached the bar that the pains started….Excruciating pains shot through my stomach and I was doubled over in agony. I couldn’t breathe or cry, I just collapsed and when I woke up I was surrounded by hotel staff. I had no idea what was happening and all I could think was that I wanted the pain to end, and if that meant that I ended all together then so be it. It was horribly selfish of me to think like this but I had never felt anything like it, like something was ripping its way out of my stomach….and then suddenly everything was still again, silent and calm. Like a calm ocean after a storm, but everything was spinning in slow motion. I don’t remember seeing or hearing my mum at all, I was off in my own little world and it was nice.

I woke up lying in bed feeling relaxed rested and peaceful, though still slightly numb. Looking around me I saw that I was covered in wires, there were tubes coming out of me and were attached to what looked like a giant syringe (sliding scale), machines were bleeping, drips were hanging and I was in a room with a huge glass wall.

My time in hospital was a blur, a nice blur though. I spent a few days in intensive care and then a week on a ward. I was told by my mum that with one prick of my finger everything had been solved, the mystery illness and weight loss, the mood swings and excessive tiredness had all been accounted for. After the hotel I’d been airlifted to a private hospital just outside of Paris where, unknown to me, battles with insurance companies were taking place, money was being demanded and bills were being racked up. My only concern was that the hospital overlooked a huge cabbage field and every single meal somehow incorporated cabbage! I swear I had cabbage for breakfast one day!

Despite the menu I was happy again, because I had been saved and there was hope. As far as I was concerned the worst was over, nothing could beat that pain….

So that’s D-Day. Remember new type 1’s - hang on in there and don’t give up, fight it and win. I cannot express that enough. You will recieve help from so many different sources but you just need to let it happen and go with it.

Ninjabetic

How low can you go?

For the last 9 years I’ve always ALWAYS run high with my blood sugars. I think I could count on one hand the amount of hypos I would have in a year and the same went for the amount of times I would test my sugars. Terrible I know. I’m shocked that I’m still here, I must be like a cat with 9 lives.

Really it’s down to the fantastic teams at my local hospital (A&E, MAU and the diabetes clinic) that I’m still alive to tell this tale!

In the last 11 months I’ve tried so hard to pull it back, to get on track, to come to terms with my diabetes and to try to accept it as part of my life. As such I have had to start from scratch. This meant taking my insulin 5 times a day (like I should have always done), testing my blood sugars three times a day, getting my hba1c done (though I must admit that I have only had this done once in the last year), learning to carb count and how to calculate corrective insulin doses. There are many more techniques that I still need to master, and I’m sure I’ll be a pro one day, but one step at a time for now.

So anyway, the result of being a “good diabetic” has completely thrown me! I feel fantastic, I have heaps of energy, I bounce around like an excited puppy, I want to be active all of the time and generally feel a lot better in myself!

This has come with a small price though, which is having hypos. Being a newbie to carb counting and correcting high blood sugars had left me having hypos left right and centre, however they have calmed down a HUGE amount in the last few months. To be honest, they don’t bother me too much as it’s a brilliant excuse to munch on a cheeky chocolate bar, and who doesn’t love that?!

They really didn’t bother me until last Thursday (5^th April) at around 8:30pm. Now I’m still unsure about what happened, if I did anything wrong, why it happened and how I can avoid it happening again. See I’d eaten at about 8:00pm, half an hour later the symptoms started. I was light headed, shaky, confused and slowly turning into the hulk (I didn’t rip my top off though). I went and found my bag and munched on some dextrose tablets….nope….that didn’t work. I wandered into the kitchen and ate a kitkat….nope....that was no good either. I ate another and that was the last thing I remember.

The next thing I knew I was being held up by a paramedic, I had a mouth full of blood (very attractive) and a thumping headache! Then I passed out again! I woke up at the kitchen table with 2 more paramedics there and a tube of hypo-stop being forced into my mouth. The funny part is that I can remember thinking to myself “wow that guy sat opposite me is really good looking, I wonder why he’s here, and why is he staring at me?” I’ve always liked a man in uniform!

The rest is still very hazy, I think this was because I had gone face first into the floor and had given myself a concussion. I can remember glimpses of the night….being in A&E with people fussing around me, having blood taken and a cannula put in, ECG, tuna sandwich, shivering, friendly faces, tea etc.

The next morning I woke up with a big yellow bump on my head and a sore swollen tongue from biting it as I hit the deck.

I was confused about what had happened as I could remember very little, but the doctors assured me that I would be fine and that I was good to go!

However I wasn’t really fine, I was scared angry and worried and that is very unlike me! I’m usually a very confident person who is strong and in control, but all I wanted to do was run back into the hospital and be looked after by people who knew what they were doing. I think I stood outside A&E for about 20 minutes, dithering, just to be sure that I wasn’t going to pass out again.

I’m not 100% back to myself yet but I’m feeling a lot calmer about it now. My confidence has been knocked by what happened and I am being very cautious all of the time, possibly over cautious. I just need to build my confidence back up somehow.

I’m sure that won’t be the last time that my diabetes will catch me off guard, I just need to be prepared for when it happens again.  

I don’t know how to end this blog, but I am still smiling, and I am still alive.

Ninjabetic

a

Mickey Mouse gave me diabetes

Who do we blame for our diabetes? There must have been someone or something that triggered it off? Is it possible that this lifelong disease is down to just plain old bad luck?

To place blame is to fully understand diabetes and that is something that I still struggle with. Ten years on from being diagnosed and when people ask me how I got diabetes, I still tell them that Mickey Mouse gave it to me. The truth is that it’s the easiest way for me to answer their question.

The Mickey Mouse story comes from being diagnosed in Disney Land. One minute I was a 16 year old in the Magic Kingdom, forcing myself to smile through the blistering heat and an undiagnosed illness. The next I was a 16 year old in incredible amounts of pain, being taken away from my family and airlifted to intensive care. The only time I’ve ever been in a helicopter and I bloody well missed it!

So here are the most common assumptions that people have for my diabetes:

• I was overweight as a child


• I ate too much sugary food


• I didn’t exercise


• I lead an unhealthy lifestyle


• I “caught” diabetes


• It runs in my family


• I donated my pancreas to science (yes, someone actually suggested that)


• God was testing me

No no and no! I was not a little porker when I was a kid, my parents did not feed me an unhealthy diet, I exercised and had a very healthy lifestyle, nobody in my family has diabetes and I did not sacrifice my organs for medical research!

Sometimes it frustrates me that people do not know the difference between the types of diabetes, that we are all tarred with the same brush. However at the age of 16 I was guilty of this, I had no idea and unless it had directly affected me I’m sure I would have gone on being that naïve.

Nowadays my knowledge is more extensive, however still incomplete and fragmented. Before I said that I still tell people that Mickey Mouse gave me diabetes, so why do I expect people to know about an illness that they don’t have unless I can take the time to explain it to them? Yes it is frustrating to repeat over and over again the reason behind it, however by doing this I would be educating people (even the smallest amount) on the difference between type 1 and type 2 diabetes. Even if they forget what I’ve told them, they asked for a reason and have shown an interest, so maybe it’s time for me to step up and show more of an interest back.

You never know, if enough people do this, then one day people might not need to ask.

Ninjabetic