We have moved!

Hello wonderful friends! We have now moved our blog over to a new domain, because it gives us more space and flexibility for what we want from our blog. Thank you so much for following us this far and we look forward to seeing you over on our new space!! :) Now you can find us at www.sugarrollercoaster.blog.com

D-Blog Week Time!

Well guys, it's my first time to participate in D-Blog week and i'm very excited about it. Since I discovered the DOC I have been so lucky to meet such wonderful people and have the opportunity to read so many wonderful blogs from fantastic people.

Here is a description of the first topic of D-Blog week:

"It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends.  With that in mind, let’s kick off Diabetes Blog Week by making some new connections.  Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!!  Let’s all find a new friend today!    (Special thanks to Gina, everybody’s Diabetes BFF, for helping me title this post!)"

The listed blogs below are just some of my favourites, I couldn't possibly choose just one blog! Check out our blogroll for many more awesome bloggers! Of course our blog roll doesn't do everybody justice, there are so many more fantastic bloggers out there! We are constantly updating our blog roll, so watch this space!

First up is my wonderful friend, Charli over at Charli 1point5 - A Day In The Life. 
I have been so lucky to meet this wonderful woman. We met through the DOC on twitter back in November and I now have the honour of calling her a very close friend, and I love her dearly. Charli writes about her thoughts and feelings about living with Type 1 Diabetes as an adult, working and doing other normal adult things. Charli speaks from her heart, and if you are not reading her blog already, you need to get over there pronto. Charli honestly and humorously addresses the good, the bad, and the downright ugly part of living with Type 1 Diabetes.

Lindsey - Over at Dlife Blogabetes
Lindsey and I met many years ago, on Diabetes Teen Talk. That website was a great resource for me as a newly diagnosed Type 1 thirteen year old girl. We have been emailing since 2005 and we have been through many things together, not all Diabetes related. I love this gal like a sister and she writes about the daily struggles of Diabetes and how it affects her general health, work life, relationships and all the many other variables Diabetes addresses.

Sara - Over at smartDpants
I've recently started following Sara's blog, but I have always been following her on twitter. Sara never fails to make me laugh and inspires me every single day. Sara created the hastag #DPorn on twitter when I got adventurous and decided to try a boob infusion site - and I still crack up today just thinking about it. Get over to her Diabetes blog now!


Jess - Over at JessMeandD
Jess not only writes about living with diabetes every day, but also about the emotional aspect that Diabetes brings to so many of us. Her posts never fail to inspire me and Jess always has the right words in times of need.

Carrie - Over at My Unemployed Pancreas
This gal is the toughest Dia-bad-ass you will ever meet. She loves bacon, and chocolate covered bacon, where could you go wrong? Carrie writes about her transition from high school to college life and everything in between, with Type 1 Diabetes.

Remember - these gals are just some of my favourite D bloggers. There are thousands more blogs out there that I wish everybody knew about! I love you all guys!

Look At The Stars, Look How They Shine For You..

Song titles seem to be the theme of the week here, so i'm going with it. Music is a big part of my life. I constantly need music playing in the background to help me not panic and think i'm about to die. I have been doing this for years, since I was a young teenager. Lately, i've been trying to phase out my dependency on music. My counselor says I need to. I argued that this wouldn't be helpful because then i'd just panic and be paralysed by fear all day.

Thing is, i'm already paralysed by fear all day. The music just stops me looking like an insane person and gives me something to think about. The reason I play the music is because it distracts me from thinking irrational panicky thoughts. So I need to stop this. I need to think my thoughts, and deal with them. That is; let them come into my head, and say; "FUCK OFF! YOU'RE IRRATIONAL!". Or something along those lines.

The last few months have been rough. I haven't been testing or taking my insulin nearly enough as I should be. But today, I tried to be brave. Yesterday, I fought off a panic attack before I got in the shower. I wanted to take a shower so badly, but my mother was across the street and I couldn't see her. I knew my blood sugar was high because I had a huge breakfast and didn't bolus, but that wasn't enough reassurance for me. But I fought it - I had the shower, took my time, and didn't panic.

Same this morning. I woke up and knew my Mother wasn't in the house. I calmly got dressed and calmly walked out to where I knew she would be in the street, but I didn't test my blood sugar. I was afraid that I wouldn't handle the number and that she'd abondoned me and i'd be all alone and i'd die. Or something. But I found her and when she wasn't looking, I tested.

For the rest of the day, I took very good care of my Diabetes. I tested, and even got in some exercise. It felt good. But as the day went on, the pressure was building and building. Long story short, after a tense fight between my sister, my mother and I, I felt like I was ready to blow.

I didn't care that it was 11pm at night. I slipped on my running shoes, unlocked the front door and bolted out the drive way, around the corner and across the street. I stopped outside a nearby pub to catch my breath. I must have been running only for about 3 minutes, but man I was sprinting. Running away from what I had left behind. The fear, the frustration, the irritation of my family.

I was running towards my wonderful friends, the world that is out there for me that I cannot seem to be brave enough to take the leap into. I want it so bad. But i'm stuck in this hole and I can't get out. The light from the local pub was the first bit of light I had seen since I left the house. I had my meter in my pocket, my glucose tabs, and my phone. Diabetes was still there. I left other crap behind. But you can't leave Diabetes behind, I thought to myself. So I sat down, in the middle of the road at 11pm at night, the only light around me was the spotlight from the top door of the pub, the night sky and the stars. This may seem crazy to you but as kids in Ireland, you're weird if you haven't laid down in the middle of a deserted road (That would be busy during the day) at night time. It's so peaceful, to lay down and just watch the stars.

So I did. I laid there. Gripped my phone tight. My heart pounding. I watched the stars through the branches and leaves of the trees over my head. It was not cold, there was no breeze. In that instant, I forgot about what I left behind. I was lost in a world where I was mourning and yet celebrating what I had lost before fear took over my life. I lay there like a starfish on the cool tarmac. Snippets of my life at different times were flashing through my mind while I started to control my breathing. The days of being in love and feeling invincible. Before I told my family I was gay and how my parents looked at me differently, they look at me awkwardly now. How I used to think if I lost my ex of 3 years that I would lose everything. Summers with my grandparents who have both passed on now. Days when our family was happy. When I wasn't a disappointment or a nuisance. When I didn't let Diabetes define me.

Then I imagined the life I could have, if I didn't have fear. I could have a whole new life in America. All of my friends are doing it. Going their separate ways. Getting jobs in the states. But i'm stuck here living at home with my parents because i'm too much of a wuss. I sometimes wonder, why do I have to depend on people? As a child I had nobody in my life that was constant and whom I could depend on. I managed fine by myself all those years. So why this now? Why am I waiting for somebody to hold my hand, and tell me it's going to be okay? Why can't I tell myself it's going to be okay? Why is it that I can support and tell the people I love that everything will be okay, but I can't tell myself that very same thing nor believe it?

I stood up and with a smile, walked back towards my house, in the pitch black, breathing in the fresh night air. I came to a farmers gate at the end of the lane before my house. I sat on it and stared into the pitch black field. Everything was dark. Until I noticed a light at the very far end of the field. It looked so beautiful. It was just a house or stable light or something. But I couldn't take my eyes off it. Then I looked up, and there was the most beautiful arrangement of stars I have ever seen in my life. It made me smile. It gave me hope for a future. That I can trust people that are in my life. That people come into your life for a reason. Things happen for a reason. It was an interesting way to end my night.

And now i'm sitting here writing this post with no pants on (Charli, Thomas, Carrie, Emma) will understand this. It feels good to have no pants on, you should try it sometime. Also - try waxing your legs. I feel mighty sexy. I don't know how to end this post. Other than for some reason, I can't stop smiling. I needed that run, that total randomness.

I'm so thankful for people that come into my life that make me feel like everything is going to be okay. You know who you are, and I love you dearly!

 

Oh, You're In My Veins

I was listening to the song "In my veins" by Andrew Belle and it inspired this post. I haven't blogged in about 2 months, it's good to be writing again.

- Also, this blog is extremely negative and explores the untalked about areas of how I feel about my Diabetes. Remember, ydmv. (Your Diabetes may Vary.)

Type 1 Diabetes is in my veins. The feeling that I have sand running through my veins instead of blood when i'm high. The feeling of nothing running through them when low.

It's on my skin.
That tingling when i'm low or the dry tight itchiness when i'm high. The sweat I break out in when i'm high in the night.

It's in my eyes.
The feeling that elephants are sitting on my eyelids when i'm low. Trying to stay awake. The feeling that a film of grease is covering my eyeball and the sting and gloopiness of it when i'm high.

"You're all I taste at night inside of my mouth."
It's in my friggin mouth. The dryness on the roof of my mouth or the back of my throat when i'm high. My face feels like it's hanging off when i'm low.

It's on my hands.
My fingertips are scarred from pricking. My hands get shaky when I go low, and sweaty when i'm high.

It's in my heart.
The speed of my heart changes depending on my blood sugar. The pain I feel in my heart to just be like everybody else and not have to deal with this.

It's in my stomach.
The hunger from a low. The hot acid feeling when i'm high. The nausea. The flipping. The scarring.

It's in my legs.
My shins feel like they are going to snap when i'm high. Walking to the bathroom is an effort. I feel like I have jello for knee caps when i'm low. The scarring.

It's in my head.
The fog of a low blood sugar. The crankyness of a high one. The headache. The god.damn.fog.

It's in my brain.
The fear. The guilt. Despair. Loneliness. Terror. Agony. Pity party. Drama. Effort. Selfishness. Eat everything. Just incase. Be prepared. What if. Blind. You're going to die. You are not normal. Pain. Insanity. Mania. Exhausted. Hold my hand. Hold me through it. Alone, forever. Nobody will ever love you. You'll never conquer this. Defeat. Afraid. Panic. Heart attack. Chopped off leg. Liver failure. Kidney damage. Stroke. Blood clots. Death. Die. You're going to die. You're going to die. You're going to die.

As I see it, Diabetes is a huge part of me. So why can't I get a grip on it? Why do I let it make me feel like a bold child, and why do I fear it?

Diabetes has me in a corner. A cold, dark, damp agonising corner. With sharp pieces of glass sticking out of the walls. Like the Chokee in the principal's room in the movie Matilda. The chokee is my Diabetes and i'm Matilda locked in it. Legend says that the key is there, but I have been looking for it so long and had my hopes dashed, I wonder if they key is even there anymore.

I see my DOC friends that have made it out. Who can see the light. Or have made it past the glass. They are my strength. They are what make me want to wake up in the morning and fight for another day.

But what if i'm not strong enough? What if I don't make it? Then what? How much longer can I do this for?

I wish I had something more positive or motivational to say. But right now, this is how I feel.

"So, how do you feel about that?"

As the black and white person that I am, I put things in boxes. There's the "obsessional" box, the "good" box, the "I don't care" box, and the "bad" box. Counselling goes in the "bad" box.

My previous experiences with counselling have involved:

1) A counsellor making me feel even more out of control when a large part of my problem was feeling out of control, by saying that she would tell my parents about the things which I had told her (not suicidal thoughts, for the record, I do not believe that what I told her required the involvement of another); and

2) A session of counselling which led to my feelings of depression and thoughts about death increasing rapidly. I went into the session feeling about as bad as I'd ever felt. I came out of the session feeling worse. I didn't even know that was possible.

But considering that my depression is very persistent and the dent made by Citalopram has been slim, my doctor told me that it was time to do something more. The two steps were to raise my Citalopram dosage to 30mg, and to get counselling. He actually suggested CBT, but my university has offered me traditional counselling right now (and for free) whereas if I wanted CBT I would either have to go privately or go on a waiting list. So I decided to delve back into the murky depths of talk therapy once again.

It would be a lie to say that I didn't wake up four times overnight freaking out. It would be a lie to say that I didn't have to make myself a list of rewards I would give myself (sushi, chocolate cookie, episode of Lip Service, 2 hours less studying today) if I successfully completed a session. It would be a lie to say that I didn't have to sit on a bench whilst I was walking to counselling as a kind of 'time out,' or to say that my heart was beating at a normal rate when I went into the counsellor's room.

My first session was anti-climactic. I guess I'd been expecting to feel something extreme. As it happened, my eyes were dry throughout my session. I explained the thoughts and behaviours which I am unhappy with. The counsellor did not act in a judgemental manner, and she did not look at me like a hopeless case. Those are the positive things about my counselling session.

On a more negative note, I am concerned about the long-term effect of counselling sessions which don't seem to achieve anything. I am worried that they could further make me believe that nothing will make me feel better, because in general that's what happens. The more things fail to make me feel better, the more I feel like this is hopeless and recovery will not happen for me. I am scared that counselling will do this. Additionally, I felt sick at the end of the session. Despite the fact that it was fine, my stomach was churning after discussing my emotions and behaviour with the counsellor. It was nothing she did, it was just how I felt. And I will probably be anxious about next week's session. In fact, I already am anxious about next week's session.

Before next week, my counsellor asked me to think about the rules which I set myself. I never really considered this as a bad or even abnormal thing before, but apparently the way I talk about them is unusual. My rules include things like:

1. On a day with no other commitments, study for at least 5 hours. If you have other commitments this may be reduced to 3 hours.

2. No more than one bag of crisps per day.

3. No more than one cookie per day.

4. Once you are losing the vast majority of games of Minesweeper/Solitaire in the evening, keep playing. Only once you win a game can you go to bed.

5. No more than one fast food meal per week.

It has been mentioned before (and also on Twitter today) that these kind of inflexible rules could indicate obsessive compulsive disorder, but (as far as self-diagnosis goes) I am almost certain that I do not have OCD. I do not have thoughts about something negative happening if I don't obey the rules, I merely feel very guilty if I fail to follow them. However I then discovered something called obsessive compulsive personality disorder, for which I fit almost all of the criteria. This bothers me, because I do not want another diagnosis, and I probably will not speak to anybody about it for a while. However, OCPD does often lead to depression and anxiety, so perhaps if I were to be diagnosed with it then it would impact on the way I am treated for those coexisting conditions.

I might have taken counselling out of the "bad" box and put it in the "I don't care" box. It still triggers anxiety, but not to the same extent that it did before. My session had positive and negative effects, but none of them were severe and it did at least give me some food for thought.

I am still fairly certain that this will not help me. However, I am willing to go to a few sessions and see what comes of it, and that in itself probably counts as progress.

The Other Diabetes

Recently in the DOC (particularly CWD) it seems like there has been a lot of talk about type 2 diabetes and type 1 diabetes. I've read a lot of posts before about people with type 1 who want a different name for their condition, because of the constant confusion and misconceptions around diabetes. I've seen TV shows (mostly on Channel 4, UK, although they actually seem to have improved a lot recently) which blatantly confuse the two illnesses, which have different causes, some different symptoms and different treatments.

I think that the level of confusion between the two types of diabetes is irritating, to say the least. Type 2 diabetes can often be treated (especially in its earlier stages) with diet and exercise, and even when this is ineffective, pills are often used rather than injections. From what I've read about type 2, it seems that BG levels are often more stable than what people with type 1 experience, and fewer BG checks per day are necessary. Honestly it bugs me to have to say to people "no, I will NEVER be able to control this with diet and exercise" because the media are careless and don't distinguish between two very different conditions.

However, some of the comments I have read are just plain cruel about the people with type 2 diabetes. I get irritated with the ignorance surrounding the types, I get irritated with people who spout crap when they don't have a clue, I particularly get irritated with the media, but I have never really thought to get irritated at the people with type 2. It just doesn't really make sense to me. If you have type 2, hi! We have two different conditions, which overlap in some ways. The similarities are that we both feel like crap when our BGs are high, and we are both prone to complications, particularly if we have many high BG levels. There are even more similarities if you consider somebody with type 2 diabetes who uses insulin, because we both have to face scary lows, and the challenges of injecting multiple times per day or wearing an insulin pump.

I have empathy for anyone who has woken up in the middle of the night with a pounding in their head and a mouth like the Sahara because their BG is high. I have empathy for anyone who has felt the whirring around their ears and the spinning in their head; the absolute confusion and desperation to eat from a low BG. I can empathise with anyone who has ever looked at the meter and felt angry because it gave them a number they really didn't want. I can empathise with anyone who has decided to pass on the cake or cookie because their BG is above the target range.

Some people feel irritated at people with type 2 because they 'brought it upon themselves'. After some googling, I have read that 80% of people with type 2 are obese, so there is certainly a strong weight related risk factor. However, here are some issues I want to highlight:

1) Only 80% of people with type 2 diabetes are obese. That is 1 in 5 people with type 2 diabetes who cannot in any sense be blamed for their condition, even if you want to blame obese people for developing diabetes.

2) Only 25% of obese people develop type 2 diabetes. If you want to blame people only for factors within their control, why blame those with diabetes in particular, when for every obese person with diabetes there are 3 more who may have had exactly the same lifestyle and just been lucky enough not to develop diabetes. There is absolutely no reason to discriminate against the diabetic obese rather than the non-diabetic obese.

3) People do not want to be obese. There are still studies into what makes some people become obese rather than others, and obesity is definitely often caused by mental illnesses such as depression or dysthemia, or even just a traumatic life event. In that sense, even if a person's obesity is caused by overeating, can you necessarily blame them if the overeating is in some way out of their control?

4) The risk factor for certain types of cancer is also hugely increased by obesity. Would you blame people with cancer in the same way as you blame people with diabetes?

I'm sick of people directing their anger and irritation in the wrong direction. If you're pissed off at the ignorance and misinformation, email and telephone and campaign against misinformation in the media, and correct people who present misinformation to you. But why direct your anger at people who have a particular illness(with a few similarities to that of you or your child)?

Sweatbetes Week 5

Today was the start of my fifth week of running. And I ran 2.5 miles in 25 minutes - that's further than I've ever managed before! I'm really happy about it because at the start I could barely manage a mile, I got so out of breath so quickly after MONTHS of barely exercising.

I've lost about 1.5lbs, which is fine - my weight was normal to start with, weight loss is not my gain. But I think I'm getting more muscles (yay!!) because my legs are looking a bit more toned. That could be my imagination, of course.

I can't wait until I hit the 5K mark, and it doesn't feel too far off now. Once I can do that I hope I will feel like I'm running 'real' distances rather than just jogging around the block!

I also can't wait for the day that I am faster than my 40something mum, who has been in training for a little longer than me. (Also she's underweight - about 2 stone lighter than my perfect 22.5 BMI self, and I swear that must make it easier - she's got very little to actually carry around!) Yes. I'm bitter about my mum being better than me. It's a bit demoralising.

I'm really loving using www.dailymile.com to track my runs. So far I've run 34 miles and apparently burned off 36 donuts!

I really hope I manage to keep up running after next week, when I go back to university, have to run on different roads and won't have a running partner anymore.

Control

Control is a big word. Although I know I can't get my diabetes under complete control, I try to try the best that I can. Recently, for whatever reason, my BGs have been slipping and the last few a1Cs I've had have been higher than I would have liked. I do a hell of a lot (temp basals, bolusing for all food, making adjustments frequently, testing BG 10-12 times per day) but there are a couple of areas that I'm looking at for improvement.

Firstly, I'm starting to log my BGs. That's something I haven't done for a long time - I tend to rely on my memory for pattern spotting.

Secondly, I'm going to start weighing my food. I'm going to order a scale to have at university so that I will keep it up. I'm not going to weigh everything, just the tough to guage foods like cereal, pasta, rice, etc. Although I'm pretty darn good at SWAGing, I want to see whether more precise measurements could help me with unpredictable meal spikes.

And if neither of those things help, I'm going to think about adding a shot of Lantus to my regimen, since people have suggested that could help with stability. My last resort is going low-carb, but I'm not so keen on that because I'm not sure how well it would fit with my pesco-vegetarian diet.

So, here's a nice screen shot of the first few hours of my crazy new log. I'm not testing my BG as frequently as it would suggest - some of those are CGM numbers. And there were some BG tests in between. I had to treat 3 BGs last night (although the numbers weren't below 4 I count them as lows because I had to treat them to stop them getting that way).

Wish me luck on the crazy logging! I've never been that good at it, so I'm really hoping I can manage to do it for longer than a few days.

P.S. Yes, 12AM until 12PM does count as "night" for me. Not only do I sleep long hours, but I was awake for quite a while at 6AM. Whatever, I'm a student on vacation. No judgement please!

Looking Back

Sometimes it's important to look back, to see where we've come from, what has changed for the better and what has changed for the worse. Since I wrote this piece for English class almost four years ago, I have been using the pump and CGMS. Diabetes has become harder to manage, and I've tried my best to rise to the challenge. I still have the same undercurrent of fear that I can feel when I read this essay, but I think it has become less strong. I have been forced to face up to the clinical depression which has been present in my life for a long time but which recently became more severe. I have been weakened, and I have grown stronger. I have tested my blood glucose tens of thousands more times. I have changed hundreds of pump sites. I have been faced with serious lows and highs which made my head sticky and my mouth feel like the Sahara. I have tried hard, I have struggled, I have won, I have lost and I am still fighting.

A Silent Attack

Four thousand two hundred blood sugar tests; one thousand seven hundred and fifty insulin injections; one thousand and fifty high blood sugar levels and seven hundred low blood sugar levels. Four hospital appointments; six blood tests and three days in the paediatric hospital ward with an intravenous insulin drip.

On Friday July 6th 2007 my life was changed forever.

On June 27th my Grandma came over for dinner. When she arrived, she hugged me, and drew back, surprised. She was shocked that she could feel my ribs through my clothing. I hadn't been feeling too good for a while; it had been harder than usual to focus at school, and I was sleeping a good 12 hours a night.

On July 6th, I went to my doctor. She tested my blood sugar levels, and acknowledged the result with a short, hesitant gasp - the drawing of breath that I knew even then was going to change my life forever. As if I were someone else, watching from far away, I saw disbelief on my mother's face; she never thought this would happen to her daughter, who was still, at fourteen, her little girl.

"I have a girl here who needs to be admitted to the children's ward. Blood monitor reads off the scale, ketones positive times 5. Some symptoms of ketoacidosis, but her blood acids haven't been tested. Only weighs 40 kilograms." These foreign words broke through the fog of my mind, bringing to life my situation and sending me down to earth with a bang.

My hospital stay was a flurry of "don't worry, this won't hurt"s and "you'll just feel a little prick"s, none of them true for me. I was shocked, even then, by the extent of the pain of a chronic illness. Everybody said it would get better with time, but I didn't believe them - why would I have done? I had just been thrown into my worst nightmare.

Once I'd had my first shot of insulin, my blood sugar level plummeted back into the 'normal range,' which shocked my body, which was used to elevated levels, used to being off the scale. That shaking, the fog, which seemed to seep through every passage of my brain, that feeling of losing control, was my first of many experiences of what hypoglycaemia felt like.

"Now, don't worry, Emma, you'll still be able to have children. They will have a 3-4% chance of developing type one diabetes, but as long as you keep your blood sugar in good control throughout the pregnancy, there shouldn't be any complications." These words stunned me - not because I'd thought I wouldn't be able to have children, quite the opposite, but because nothing like that had ever crossed my mind. I hadn't had time to think, at that point, that somehow this disease was going to infect every aspect of my life, to somehow become a part of me.

It was when the nurse handed me the insulin pen that I broke down, for the first time. The needle was only small, but what it symbolised was much greater. A new lifetime dedication was being forced upon me, a condition which I had never asked for and certainly did not want.

The first night was the worst; my head was still spinning from flashbacks of the doctor's face when she had gasped... When she had phoned the hospital... When the letters "HI" had appeared on the blood glucose meter. The hospital contained everything I didn't want to face; the smell of the food and the hallways jolted my mind back to just one month before, when I'd seen my granddad for the last time in that same hospital.

Type One Diabetes is a chronic condition, which results when the body develops antibodies towards the insulin producing beta cells in the pancreas. An auto-immune attack results, which eventually entirely destroys that part of the pancreas, leaving it incapable of producing insulin. The function of insulin in the body is to lower the level of glucose in the blood, by allowing it to pass into cells in the body and be used to provide energy. When there is no insulin, therefore, the blood sugar level just keeps rising, until, in a worst case scenario, the person could go into a coma or even die.

I learnt all this during my time in hospital. At first it seemed a foreign language to me, the words meant nothing, but now each of those words registers clearly in my brain, and I know what it means almost too well. I now know the carbohydrate contents of most common foods (I have to count carbohydrates in order to balance them out with insulin); I know my acceptable blood glucose levels for all times of day, every day; I know how I feel when my sugar level is high; I know how I start to act when it gets too low.

In the beginning, to treat my diabetes, I was put on a treatment of two insulin injections a day. Whilst taking this, I had to eat a set quantity of carbohydrate every two hours in order to keep my blood glucose levels steady. This treatment did not work for me; my blood sugars stayed high and would not come down, no matter how little I ate, or how much insulin I took.

I have now moved onto a more effective treatment - injecting insulin every day in the evening, as well as whenever my blood sugar is high, and whenever I eat something containing carbohydrate. This generally totals to around six injections a day, but can be as little as four or as many as eleven or twelve. Sometimes I still become frustrated - it is a heavy burden for anybody to carry, every second, every minute, of every day. And sometimes it still feels that I live for my health - everything must be weighed, factored and counted, nothing can be spontaneous anymore. A simple cold or flu, or sickness, can turn into something serious, possibly requiring hospitalisation. However, a life like this becomes normal, and most of the time I don't even think about it anymore.

Soon, I will be tied - quite literally - even closer to my health. An insulin pump is another method, uncommonly used in the UK, to gain tighter control on blood glucose levels than it is possible to do on injections. Using this treatment, insulin continuously infuses into the fat below the skin using a tube from the 'pump' (an object around the size of a mobile phone, which contains insulin) which is connected to a cannula, a flexible plastic tube which must be inserted into the fat on the abdomen, thigh or arm every two days. I will still have to test my blood sugar levels, program my doses into the pump, and count my carbohydrates, but new technology provides better accuracy and precision, and less room for error.

I am not condemned to die young, or to suffer greatly in the preceding years. But when uncontrolled, diabetes is a silent killer, causing the diabetic to battle with the prospect of kidney failure, blindness, stroke, heart attack, and many other potential complications.

People with diabetes have an average life expectancy less than those without, but I will not become another statistic. With everlasting vigilance, and the best control I can hope for, I will live as long as I can, and achieve everything in my life that it is possible to achieve.

Sweatbetes Week 4

Just a quick post. I feel that a sweatbetes post every Tuesday is necessary!

I'm feeling a bit demotivated with running, and I guess that could be what's causing my depression symptoms to worsen again. I have shin splints and nasty cramping in my lower legs, which is sometimes making me stop running.

The plan for now is to stop increasing my running distance, and stay at around 2 miles per run. I'm going to cross-train on top of that, because it is not so high impact and will put less pressure on my shins.

I'm frustrated! I hope that the pain will get less soon so that I can start increasing my distances again and hopefully start feeling better. I don't like cross-training so much because I'd prefer to get out in the fresh air. But you know, I'll stick with it, and hopefully my legs will be doing better soon.

Custard and Quicksand

If life is like swimming, the water I was swimming through started to get thicker and thicker a long time ago. For a while I guess it was like fighting through custard. Sometimes it got thicker and it became harder and harder to swim. Sometimes it let up and got easier again for a while, but I haven’t been swimming in water for a long time.

Eventually I was swimming in quicksand, and being pulled under, so quickly. It felt so out of my control.

Somebody is playing a cruel trick on me. They replaced the quicksand with custard again, just for a few days. The custard felt so much easier to swim through. Now I’m just alternating between custard and quicksand. Just when I remember how much easier it is to swim through custard, the quicksand is back. When it’s easier to fight, I forget how hard the hard bit can be. When the hard bit comes back, I don’t believe that swimming will ever get easier again.

I don’t know if this is what recovery is supposed to feel like.

I’ve never recovered from swimming in quicksand before.

I don’t know if it is worth fighting through the custard just to be pulled under the quicksand again, or whether this means that I need to try something else.

I don’t know why some people believe antidepressants are a fucking lifeboat, a ‘happy pill’. They have stopped me from drowning in quicksand, but that’s all they have done. I’m not better. I’m not okay. I wish the custard bits would last for longer. And I can’t even imagine how it would feel if the plain old water came back.

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This blog might be temporary. I just needed to get my thoughts of recent days out somewhere.

Sweatbetes Week 3

I've had some injury issues this week, which is a shame, but I'm trying my best to both work through it and not push my body harder than it can deal with. "Shin splints" seem to be the name for multiple different problems, and basically a catch-all for pain in the shins, which is what I have, but mine is not so bad. When it happens, if I stop for a second and do some stretches it gets less intense and I'm able to keep going.

My mum and I ran almost 3 miles today, which is pretty cool. I could always do a few miles on the treadmill, but when it came to running in real life (hills and all!) I couldn't even do a mile to start with! I used to be able to run quite far until I got out of shape with depression etc., but I'm only just over 2 weeks in so this is a really huge improvement.

I even went shopping this week for some new trainers, I now have Nike Air Pegasus 28 trainers, which really beat the 9 year old Skechers I had been wearing (note to anyone reading: learning to run in shoes which were never intended for running and now barely even have soles is... interesting. But I didn't want to invest in new shoes if I didn't feel I was going to stick at it).

So I've now logged 20 miles overall (as you can see in the cool orange thing under my profile on the side of the blog), I'm feeling good and I'm ready for more!

Diabetes wise, it's not as hard as it was. I don't need to consume as much sugar beforehand and I'm not getting crazy overnight drops now I've adjusted. It's going well. Now I just need to find a decent belt for running which is comfy and doesn't jiggle about or rub, because that would drive me crazy.

Inertia

When I was diagnosed, I was admitted to the children's ward at the hospital close to where I live. That is where I was designated my first (paediatric) diabetes team, and where I got my diabetes education. That is where I switched from Mixtard 30 (yuck!) to MDI of Lantus and Novolog, and that is where I made the transition from paediatric services to adult diabetes services. Then I switched from MDI to pumping Novolog, and from pumping Novolog to pumping Apidra.

My diabetes team are really supportive, and know that even though my a1C is in the high 7s I truly am doing the best I can. They know that I test 10-12 times per day and use a CGMS and run temp basals and adjust my basals every couple of days and bolus for everything I put in my mouth and spot patterns and do all that jazz. And they give me the credit for doing that, even though my a1C is considered sub-optimal (apparently I'm supposed to aim for below 6.5). They realise that my hypo-unawareness is something which waxes and wanes and doesn't seem curable simply by running high for a bit, and understand that my other illnesses can sometimes affect my diabetes control. They have even given me opportunities for public speaking, teaching doctors and nurses from my area about the insulin pump and continuous glucose monitor, which was great.

The problem is, I don't feel like I necessarily get much from them other than an ego-boost. They make me feel like I'm doing the best I can and that is lovely, but also fairly pointless. I may as well just be told my a1C in an email, because it seems that that is the primary result of my appointments (which are every 6 months and usually last less than 10 minutes). Because pumps are so uncommon in my area, they do not seem to know a lot about adjusting basal rates according to patterns, and they know almost nothing about CGMS (I was left to insert it myself according to the instruction manual, and they told me to disconnect the transmitter when I have a shower - bad idea!).

The clinic I could move to is in Cambridge, where I go to university. In terms of ease, it makes little difference to me (I spend roughly the same amount of time at university in Cambridge and at home in Essex). However, Addenbrookes hospital has an amazing reputation, particularly in diabetes care. There was recently an article published about regional variation in amputation rates, and the Cambridge area had the lowest rate, with where I live in Essex having the highest rate. Addenbrookes also have a good history of prescribing insulin pumps, which will become relevant to me soon, since I am coming up on 4 years of pumping and it will be time to prove yet again that I should get a new pump rather than going back to MDI.

However, I am still not sure whether or not I should move. As a person I tend to get stuck in the rut of what is comfortable, and it is certainly comfortable for me to keep going to the D clinic which I have always gone to, and be seen by the professionals who I know and who know me. I am worried that if I switch my team might be more judgemental about the fact that I am failing to reach the targets set, because they do not have a history with me. On the other hand, I know that those worries are kind of stupid - I mean, who cares if my doctor or nurse thinks that I am trying or not, as long as I know that I am? So I think that I will probably switch.

I just need to stop with the inertia and start actively trying to improve things. Now that is a challenge.

Infusion set drama

I feel like my pumping life has consisted of a heck of a lot of infusion set drama. I'm on the Medtronic 522, and in this blog I am going to account what has put me off each infusion set, and why I'm now kind of stuck.

Quick-Set

The Quick-Set was the first infusion set I used. I used 6mm Quick-Sets because I don't have much body fat. My foray into Quick-Sets was awful, short-lived and almost made me quit the pump entirely.

Through this period (several weeks) my BGs consistently ran over 20 (360), however much insulin I took. Occasionally I would put in a new set and come down to the 100s for a few hours, before dramatically shooting back to the 300s. When I removed the Quick-Set, it would inevitably be kinked. It was a horrible start to pumping for someone whose BGs only went over 300 occasionally whilst on MDI. My parents were even encouraging me to go back to MDI.

Luckily I continued with it, and moved to the next infusion set recommended by my CDE.

Silhouette

I used the shorter of the two Silhouette options - I think they are 13mm. They are an angled set, as opposed to the Quick-Sets which go in at an angle (both Quick-Sets and Silhouettes are made of teflon).

Silhouettes were what showed me that pumping really could work. My BGs were beautiful for the first week that I used them. However, on my third Silhouette my BGs ran higher and when I removed it I saw that it was kinked. I kept using the 3 month supply that I had, but found that between a quarter and a third of the Silhouettes I inserted would end up kinking.

The kinking of Silhouettes was not as bad as that of Quick-Sets. Because the Quick-Sets tended to kink at a 90 degree angle and block all insulin flow, I would rapidly end up over 300 or even 400, with ketones. The Silhouettes, on the other hand, would make my BGs run a little higher (in the 200s, usually), but there was clearly not a total blockage of insulin, just some kind of impediment in flow. However, I still felt that I could do better; having kinked infusion sets a lot of the time felt sub-optimal, even if the insulin delivery wasn't totally blocked. So I called my CDE and we decided that I would try out a new infusion set, that I had been wary about.

Sure-T

The Sure-T is a 90 degree infusion set (like the Quick-Set) but it has a steel needle which remains in the body, rather than a teflon cannula. A steel needle clearly will not kink in the same way that teflon is prone to, but I was wary of having a needle in me all the time. What if I bumped it on something and it poked me and really hurt, and surely it would leave a bigger bruise and more damage than my other infusion sets. Also, it just felt kind of creepier to have a piece of metal stuck in me than a piece of teflon. These worries about the Sure-T are not uncommon, I've seen a lot of people worried about it over at the CWD forums. But in the name of science, I decided to go there anyway because I didn't like the whole kinking thing.

Sure-Ts actually really aren't that bad. There are two 'stickers', one which sticks on the actual needle, and then another further up the tubing. This means that if you catch your tubing on a doorhandle, it doesn't pull the needle itself out (unless you tug really hard, which I actually did yesterday..) but only pulls on the sticker further up the tubing. That is a really good feature, because if you think it hurts to accidently rip a teflon cannula out of your skin, it HURTS to rip a steel needle out. Extra security is good.

It seems that I have used Sure-Ts for longer than 3 years of my diabetes timeline. For the vast majority (more than 3 years) of that, I had absolutely no problems. They removed a whole factor from my diabetes care. When I used teflon sets and I was troubleshooting a high BG, I always considered the fact that my set could be kinked, but steel sets never kink and for a large part of my Sure-T usage I didn't even have a blockage. I didn't have any set issues at all, which was amazing.

Sure-Ts are also really easy to insert, and wearing them is hardly ever painful. The insertion is just like doing an injection (no horrible insertion device). Having the needle in the skin is surprisingly painless, unless you hit a particularly sensitive area (my infusion site sometimes hurts a little for an hour or so after insertion, but that is not unbearable and it is very rare for the pain to go on longer). I'm not involved in contact sports or anything, but I am hugely clumsy and have hit my site with things more time than I can count, and it was never a problem.

Sadly, my love affair with Sure-Ts is over. In the past 6 months or so I have had serious problems with blockages (not in the main part of the tubing, but either in the needle or in the shorter part of the tubing, the 'tail' at the end). These occlusions end in 400+ BGs, no delivery alarms and ketones. I have been trying to ignore it but my overnight nausea filled ketosis on Monday night has meant that I'm really going to have to do something.

With my last shipment of Sure-Ts I ordered two boxes of Silhouettes so that I could try them out again.

Silhouettes, take 2

I weigh a bit more than I did last time I used the Silhouettes, around 135lbs rather than 115lbs (at 5ft 5). This means that I do have more of a layer of fat, and that probably helps (perhaps I should try the Quick-Set again!). I've gone through 20 Silhouettes and only had 1 kink. 1 in 20 is not a bad failure rate, and certainly better than I'm getting with Sure-Ts (especially because that was only a small kink, I didn't have any ketones or a markedly high BG).

In so many ways, I like the Silhouettes less than the Sure-Ts. They are less comfortable for me, insertion is more painful and sometimes the teflon causes itching. They also seem more prone to inflammation (perhaps minor infection, although nothing that I've needed antibiotics for).

However, I can't deal with any more of the Sure-T problems so I think for my next shipment (which I will order some time this week) I'm going to have to get Silhouettes.

In case anyone is interested, here is my ranking from best to worst on different factors:

Comfort: Quick-Set, Sure-T, Silhouette
Low failure rate (overall): Sure-T, Silhouette, Quick-Set
Low failure rate (right now): Silhouette, Sure-T (haven't used Quick-Set recently)
Ease of insertion: Sure-T, Quick-Set, Silhouette
Adhesive: Quick-Set (they stuck really well for some reason!), Sure-T, Silhouette
Attractivness: Quick-Set (adhesive rarely peeled up), Silhouette, Sure-T (I just don't like how they look)
Itchyness: Sure-T, Quick-Set, Silhouette

The funny thing about my rankings is that Quick-Sets actually win at quite a few things. They just had SUCH a poor failure rate that I can't imagine them working for me. Although I do still have a few lying around, so perhaps I should try again (I like going full circle).

Sweatbetes Week 2

I'm planning to run a 10K in September (with my mum and a couple of other people from work). I've been running for a little over a week now, and before I started I was fairly out of shape (not overweight, just hadn't done any cardio exercise for about a year..). When I first started I couldn't even run 2K, needing to walk about 0.5K of it. It was my breathing which stopped me rather than my legs, and I would get blurred vision and feel like I was going to throw up, which isn't something that's ever really happened before.

I ran the full 2K circuit for the first time on Sunday, one week after I began training. Then today I managed around 2.5K. I'm tired out by the end, but I'm still standing. I think that most of the time I'm doing slightly better emotionally as well, although I find it difficult to tell.

I've had to lower my basal rate quite a lot, from a total of around 19U throughout the day to around 15U. Primarily I've needed to lower my overnight basal between 9PM and 2AM (I've been running at 5PM). Before I run I eat a few spoonfuls of frosting - not healthy at all but I have been finding that eating that rather than drinking juice makes me feel less sick; I find it easier to run on a more empty stomach, although not too long after eating because I do need a certain level of energy. It's all pretty complicated to manage alongside the D, but it seems to be working out at this point.

I think my BGs might even be more stable since I started running, except for my 400s and ketones last night, but that was due to a site failure and requires a whole new blog post!

Flying the nest

When I left for university, I repeatedly searched the internet for experience and information and I didn't find that much in the way of personal anecdotes, which I find tend to calm my fears a little. So I thought I'd make a vlog on my own experience of leaving home with diabetes.

"You don't have to tell anyone"

"Diabetes is your own condition. If you want to keep it private, that's fine. If you want to tell your friends about it then that's fine too, but you don't have to tell anyone if you don't want to."

I wondered why I wouldn't want to tell anyone. I was 14 years old and I was texting my best friends to let them know that I was in hospital, that they didn't have to worry but that they could come visit if they liked. I'm pretty sure that one of my best friends announced my new diagnosis to our German class because that's where she was when she found out, and I didn't care. It's not like diabetes is anything to be ashamed of. It's a condition which I did nothing to cause and says nothing negative about me, and it might be a bit confusing to people if I have to keep disappearing to do injections and test my blood glucose.

A bit over a year later, I started to feel like I was being smothered with attention. I've never particularly enjoyed being the centre of it all, and it was just too much for me. I asked my teacher if she could ask the class to stop looking at my BGs and asking me questions all the time. It was just so frustrating for everyone to be knowing and questioning when my BG was a little high or a little low whether I wasn't taking care of myself properly and making judgements about it. I began to wish that I just hadn't told anyone in the first place.

I spoke to my teacher at lunchtime on one day, and she said she'd talk to them at lunchtime the next day. But the next morning, during registration, this happened.

Let's just say I was very glad that my friends knew that I have diabetes, knew what 'LO' means and knew that I needed glucose gel right away. Needless to say, I went and spoke to my teacher and started to view the whole situation in a newer and more positive light. Perhaps it was kind of awesome that people knew what to do.

From the age of 14 to 18, I was in high school with the same people who knew about my diabetes since the day I was diagnosed. Although I sometimes got frustrated when they looked at my BG numbers or questioned my judgements, my friends were the sort of people who I could look to when I needed help and they would know what to do. They even learned how to use glucagon.

In  October I left home for university and for the first time I was with nobody who knew me, and nobody who knew about my diabetes. I have to say, I have never had a huge problem with disclosure. I talk about diabetes as and when it naturally arises.

I do not meet people and blurt out that I am diabetic before I say anything else. On the other hand, my friends all know about diabetes. Sometimes diabetes comes up in conversation because somebody sees me testing my blood sugar, or because they see my pump clipped to my jeans. Sometimes they see me eating a glucose tablet for a low or they see a sensor or infusion set on my arm. Sometimes someone makes a comment about diabetes and I say "I have type 1 diabetes, and...". Sometimes someone makes a comment about something other than diabetes, and I feel that my experience with diabetes might be relevant.

On the whole, I try to tell people about my diabetes as soon as possible, but not before is natural. That fits into my general project of making diabetes a part of me but not the most important thing about me. If people didn't know I had diabetes, then they might not understand why I act like I do sometimes, checking my BG and wearing a pump. On the other hand, I want my identity to consist primarily in being a philosophy student, a painter, and all the other many things about me, and not in my diabetes.

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This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/march-dsma-blog-carnival-2/

Sweatbetes

Exercising isn't really my 'thing'. Most kids at school are into gym class, but I tell you, I would have taken math or English over gym any day. Exercise is supposed to release endorphines and make you feel good about yourself, but I can tell you that it does not make me feel good about myself; it makes me feel incapable, uncoordinated and out of breath.

Recently, probably due to a combination of leaving home for university, depression and hypothyroidism, I have gained a few pounds. Although my weight is still perfectly normal and I'm not worried about it as it stands, I don't want to keep on this trajectory so I figure that I probably should start exercising some.

I came home on Saturday for my vacation from university, and my mum has been going running a few days a week. She asked me if I wanted to go with her, and I reluctantly agreed because I know she'd rather go with someone. Additionally, my doctor told me last week that exercise might be a good coping mechanism for me.

Diabetes always puts me off exercise a bit. My blood sugar plummets and I don't feel it and I inevitably end up consuming more calories than I burn off. However, I know that exercise is still good for my cardiovascular health and that I should try to work though it.

The best time for me to exercise is around 4 hours after a meal. That way I don't have IOB to drive my BG down, but I'm not totally hungry and unenergised. So me and my mum went on a run around 5PM today. We didn't run that far, maybe only around a mile, but it's okay. It's been a long time since I went for a run.

Before going I had a small glass of orange juice mixed with 3 teaspoons of caster sugar (I know it sounds gross, but it totally works for my BG). My BG before I left was 9.8 (176) and when I got home it was 9.2 (165), so that was a win as far as I am concerned. So I might go out more with my mum. I know that I can make it work and I know that I should; it just takes a stupid amount of effort. And perhaps one day I might even enjoy it.

I shouldn't be scared

I had an appointment with the doctor on Friday. Not a diabetes apppointment, but a depression appointment - I have them every two to three weeks so that he can check up on how things were going. I don't want to go into all the details of the appointment because some of it is not stuff that is ready for the internet (for now, at least), but I left in tears, and I knew that when I went back up to my room I would have to see my friends so I ended up just sitting on the grass outside for a minute and crying.

I have been on Citalopram for over 6 weeks now. When I started on the medication, my depression was diagnosed 'moderately severe' (somewhere between moderate and severe) and 3 weeks later, it was simply 'severe'. This is according to the questionnaire (PHQ-9) and I had actually only gotten a couple of points worse, so the doctor decided to keep going and see where I was at in a few more weeks.

This week I went into my appointment and he asked how I was doing. I said that I honestly had no idea. I have been having some not so good thoughts and I have been crying a lot, sometimes inappropriately. My emotional symptoms feel just as bad. However, I am more able to get out of bed in the morning, and I feel more able to participate in social activities. It seems that I am outwardly getting better, although I still feel awful.

He asked how my work is going. I'm at this crazy academic ridiculously pressurised university. I said that I don't feel like I'm doing as well as I could be, but that all my marks and results have been good, which is true.

He said he could tell that I am better. Apparently I am now actually engaging in a discussion, whereas before I just seemed kind of dazed, or out of it. The way he said it, I imagined that my eyes had before been glazed over and now they're all sparkly and full of life.

Is that not just shit? What is the fucking point of getting better if 'getting better' just makes me act better? Why is it that he only cares about how my work is going and not how my mind is going? I felt like I had been discounted somehow, as if he could read everything about me from a 5 minute conversation. Does being a psychiatrist mean that he is allowed to know more about me than I do about myself?

Apparently the next step is counselling or cognitive behavioural therapy, but I don't feel ready and I'm absolutely terrified. My mum said that I should do it, like it's that easy. My doctor said that's really the only next thing he can recommend.

I'm getting over how upset I was initially about what the doctor said.
Maybe the drugs have helped, because if I can at least maintain a pretence of normality I guess that does mean I've gotten better, even if I don't really feel any better. But counselling just makes me feel so much worse. If it were just that it didn't help then that would be fine; I would go just to humour everyone and on the off-chance that it could do good.

So I have no idea what to do. I feel like my only next step is a really dangerous one to take, because when it's already like this I'm walking on eggshells, trying not to do anything to make it worse, and I know that counselling has a high chance of doing that. People keep telling me to do it, and I'm so scared. People make me feel like I shouldn't be scared, but I'm so fucking scared.

Those Conversations.

I was out on Friday night with my friends, celebrating an old friend's 21'st Birthday. I had already had 4 alcoholic drinks and was a small bit tipsy.

My cousin and I were giddy and excited as we both squashed into the same bathroom cubicle of the busy nightclub toilets. The noise outside was muffled and there was some sort of weird silence now inside the cubicle, although we were still hyper, laughing and joking.

My hand brushed over my infusion site as I placed my handbag down and it felt odd. I could feel that the adhesive was hanging on by a thread, but wasn't sure if the cannula was still inside me. My cousin, who is also called Kate, knows what she needs to about Diabetes. Here is how the conversation went:

Me: "Kate, is the tube still in my skin?"

Kate: *clumsily pulls up my shirt and tries to focus on my site* She went quiet, and I turned and looked at her and she had my site in her hand, and giggled, "Am, no, it's not in your skin, just the plaster was hanging on, the tube was out."

We both stopped for a minute. We weren't two young carefree women having fun in a nightclub anymore. Diabetes popped it's head up to say "HEY!! I'm still here ya know!! Don't have fun without me!!".

She knew that this was dangerous because I had been drinking and I knew it was dangerous.

My beverage of choice is very sugary, I don't like beer or ales or stouts or ciders, or even wine. I don't drink often but when I do this is what I drink.

Kate: "Damn, do you have to go home now?"

Me: "Nah. I'll be okay. There are 3 hours left, i'll just stop drinking and i'll be fine."

I knowingly had no back up insulin but for some stupid reason, I refused to be different that night. I was having so much fun, dancing the night away, celebrating with friends. everybody was happy, I was not going home, I was not letting diabetes ruin this night for me.

We carried on with our business in the packed nightclub bathroom. Then she stopped and said to me, trying to sound serious because we weren't the soberest that we have ever been.

Kate: "So, if you pass out, is it because you are high or you are low? Because the lack of insulin will make you high, the alcohol that you have had could make you go low."

Me: "Erm, good question. If I pass out, which I won't, just test me."

I was so ashamed of myself right there. I didn't know what to say to her. Bad Diabetic. Can't take care of herself. Doesn't know what she is doing.

 I haven't been testing my blood sugars at all in the recent weeks. I'm struggling and DRehab is just non existent right now.

I continued the night, telling myself Diabetes wasn't going to win. But it did. It was always at the back of my mind. The thirst was unbearable and I could feel my eyes wanting to close. I must have been off the charts.

I got home at 2am and went straight upstairs to put a new site in and test. I was 32.9. (592). I didn't even know what to do about that. I had no ketones, but I wasn't sure how aggresively to correct because of the alcohol. Eventually I contacted Lindsey and she told me what to do. I just took 5 units and gently cruised down the rest of the night, setting alarms every 3 hours to make sure I didn't go higher or too low.

I don't know how to get out of this stupid phase i'm going through. I'm just so scared all the time and I don't want to have to deal with it. I am so ashamed. I feel a lot of things. Fear, guilt, blame, to name a few. I just need to keep pressing on, and hoping sometime soon, something will come to me and give me strength to grab it by the horns.

Cold

I shouted, startling myself. It is disorientating to wake yourself with your own voice. The moment when I am awake, hearing myself saying what I planned to say in a dream which only just happened but I can't quite remember. It feels like there was a reason, but I have no idea what that reason was. I thought that was funny, really. Like just seconds ago I was somebody else, but I'm not anymore. It's 4.31AM. I'm not quite sure how I know that I'm awake now. Perhaps I'm just dreaming that I woke up. That does happen sometimes.

I sat up in bed. It's 5.57AM. My mouth feels like the Sahara Desert. My head is pounding. I'm not sure if it really hurts. It feels more like a drum beat. I walk to the sink and fill a mug up with water. As I drink it, I realise why my mouth is dry. My bedroom is so hot. I open the window and lie back down, feeling the cold wind on my face.

There are still a couple of hours left before I need to be awake. It feels like I am sleeping deeply, but that is funny. If I was really in a deep sleep, surely I wouldn't be aware enough to know about it. My face is pressed against my pillow. I'm not sure how I manage to sleep and breathe at the same time every night. When I'm awake, it's hard to figure out how to lie so that I am comfortable and my mouth is not pressed against the pillow.

My pump is pressing against my hip. I pull it away, but now I realise that I'm lying on my arm and the set is pressing against it. I'm not sure if it is uncomfortable enough to move. I'm thirsty again.

I wonder why I'm holding my duvet so tightly if it's warm in here. I have a blanket wrapped around me, but usually I would have kicked it off. Perhaps it's because I'm only half asleep. I drink the water.

Getting back into bed, I pick up my meter. I'm just moving, not thinking. The number on the meter says 19.3. That's a funny number. 1x3=3. 3x3=9. If you multiply the first number by the last number, you get the last number. If you multiply the first number by the last number, you get the middle number.

I breathe in so fast that I wake myself up again. It's light now. I lie back down.

Suddenly, my radio is playing. It's so loud. It's so cold. I turn it off.

It is time to wake up, but I can't wake up. I slept for 10 hours, but I didn't really sleep. I lay in bed, intoxicated by high blood glucose. So tired and so confused by being high and dehydrated that I didn't even correct down the high number I saw on the meter, because I was too busy looking at how the numbers fitted together. I was so confused that I confused cold for warm purely because I was thirsty.

The above is how I know that diabetes isn't even remotely fair.

Vlog: Infusion sets are scary

I decided to record this vlog this morning. Over the past couple of weeks, in the DOC we have been talking about how some of us get really nervous when it's time to change our infusion sets. While it's not so much of an issue for me now, when I was new to the pump, the infusion set going in was a really scary prospect.

For me, I think it was the noise. Some people fear the pain. Some people are terrified that they hit a blood vessel and bleed horribly all over the place. It is scary, and it's a very real fear. Over time though, the fear eases a little. But some people are still nervous, and I can't say i'm not one of them. The 'BANG' of the inserter is not a fun noise. The speed of a needle barreling towards your skin is not fun either. Yikes.

Every time I change my set I still need to take a little breath in. It's scary. But it's over fast, too.

I suggested to Carrie that she try insert her set without the inserter. Just go all rogue (in true diabetes bad ass style) and pop it in herself, without any help from a scary bangy thingy. So this morning I figured, that is a scary prospect too, and that she shouldn't be alone. So I did it myself, and I recorded it and put it here in a Vlog. Enjoy!

(if you are having trouble viewing this video, could you please let me know? via twitter/email)

Giving in vs. getting better

Depressive disorders suck.

For a long time I've been trying to fight, and I think I've been fighting the wrong thing. Instead of fighting against the illness I'm fighting against myself and I'm fighting against counselling and I'm fighting against medication.

Truthfully, counselling makes me worse. I know that a lot of people say that, and I know that counselling is something that takes a while to work. I know that you're not supposed to feel better after the first session. But I also know that I can't persue something that makes me feel so much worse. It doesn't just not help me, it makes me feel worse. And honestly I feel pretty bad anyway, so "worse" is pretty shit.

Today, thanks to help from Kate and others, I finally got the courage to go back to my doctor and talk to him about it. He told me that he thinks there is a reason that counselling makes it worse right now, and that he thinks medication might help me even without counselling alongside.

I'm scared of medication. I'm scared that it will make my brain go numb or that it will stop me being able to do what I am good at (philosophy) or make me irrational. I can't do philosophy if I'm not rational anymore, and I don't want to lose that part of myself - that's one of the aspects of myself that I genuinely like.

So there is a lot of fear in getting proper treatment. If I'm scared of talking and I'm scared of taking meds, what can I do? I told my doctor what I am afraid of, and he said that the medication he was prescribing me might make my head feel a little fuzzy, but that it generally passes within a week. And he said that if I don't feel better in a month, he can take me right back off it again.

As of this evening, I'm starting on Citalopram. If anyone has any personal experience (happy stories are very much appreciated!) or knows if this might affect my D management at all, please let me know.

Much as I feel like I'm giving in, I just keep telling myself that this isn't giving in, that I'm finally fighting the right thing and that I'm on the way to getting better.

Grateful.

My name is Kate. I am one eternally grateful girl right now. I wrote a post last Sunday night, about my struggles. I let out all the dirty details that I rarely share with people. I was unsure of posting that blog, because I feared that people would not understand and judge me.

Boy, was I wrong.

All you have to do, is take a look at the comments I received on that post. Take a look at twitter, at Facebook. My e-mail inbox. I cried reading the comments, I cried just now replying to them all. I can't quite put into words how grateful I am. I can't seem to thank people enough - enough that I am satisfied with to do justice to the support you have all given to me. So many of you reached out. I know that i'm not alone. You all know the truth now, and that is a wonderful feeling. I feel like I have a weight off.

I'm still struggling. But I know that I am not alone. I'm still not taking my insulin properly or eating right or checking half as much as I should be. But every day that passes, I am feeling a little stronger, a little less afraid, and a lot less alone. I'm hoping that this relapse passes soon, because I do not feel well at all. I have signs all over my body that I am not healthy, from high blood sugars coursing through my veins. I'm still searching for my inner strength to get back on the DRehab horse again, and I feel that it is close. I know that once I find the strength to get back in the swing of things, and not be so afraid, I have a whole community out there to lean on when things get tough or scary.

I'm so glad that so many of you felt that my post helped people. That never even entered my mind. The power of words, the power of community, never ceases to amaze me. My heart is so filled with love and gratefullness for you all right now. (Is that even a word?) I don't care, I love you all so much.

I still feel I haven't thanked everybody enough. I want you all to know how grateful I am and how much all your words and support means to me. Outside of the DOC, I don't have a great Diabetes support network. People don't get it in my RL like you all do. I don't know where I would be without the DOC today and it's something that I don't like to think about a lot.

You all saved me. Know that you make a difference. Please know that.

Could the Real Kate, Please Stand Up.

I haven't been around much in the DOC this past week. Maybe a little more. I haven't been participating in DSMA or the usual twitter banter that we all enjoy with each other. Haven't blogged a whole lot either. I actually haven't been interacting with anybody a whole lot.

As some of you know, I started up a little thing for myself back in December, called DRehab. The next couple of paragraphs is an extract from an email I sent to a wonderful friend of mine, whom I met through the DOC. These words explained why I needed to check into DRehab so desperately.

"My background..I was diagnosed when I was 13. I’m 19 now. At first, I did really well. I thrived on just doing what I was supposed to do and being a good kid. I had almost perfect control all the time, I never had a problem with my Diabetes at all. I did most of it myself, or so I thought, but really I let my mom control a lot of my actions and i’m only realising that now. I gave her power a little bit every time, slowly. That is why i’m where i’m at now with the anxiety. A year and a half after I was diagnosed, my Grandfather died very suddenly. I was very close with my Grandparents. That summer I seemed to have sort of melt down. I was 15. I started having panic attacks and couldn’t leave the house. Couldn’t let my Mom go anywhere without me. I would get so panicky in the car sometimes I would make her pull over and if she didn’t, I would pull her arm off the wheel and almost crash the car. I couldn’t stay in school unless my Mom stayed outside in the car. All day.

It was very intense and I was like that for a long time. I never checked my blood sugar, never bolused, and spent most of the day disconnected from the pump. I was convinced that no matter what I did, I was going to go low and die. At night time I never connected my pump. When I did check my blood sugar, rarely, it would be 500+. I would freak out if my bloodsugar went under 360 because I was afraid I would go low. I remember one day I checked and I Was 260 and I had a total panic attack because I thought I was going to go low. I had a lot of hospital stays because my Mom would discover I wasn’t taking my insulin, she would try to give me a shot and I wouldn’t let her, so she would just send me to the hospital. But I was so scared and nobody saw that. Everybody just thought that I was being selfish and that was so hard. My Mom didn’t send me to counselling because she thought it was just a phase I was going through. She didn’t know for a long time that I was taking absolutely no insulin. I lied all the time and said my blood sugars were fine. When I would feel really sick, I would maybe take 2 units to take the edge off the high.

Then I started staying connected to the pump. But I never bolused. My panic attacks got a little better to where I could almost function. I went to college, got a full time job. Staying connected to the pump but never bolusing and constantly over eating, even while I was working. I did this right up until the 27th of November, 2011. My a1c was unreadable. Then one night I was watching Private Practice and I saw one of the characters putting herself through Rehab for drug addiction. I often thought to myself, I wondered if Rehab would help me. it was like an addiction, not taking the insulin and I just needed to stop lying and be open and honest about my fears. So I started DRehab, and shared my story on twitter. They were the hardest nights of my life but I knew that I had to do something because I was so scared that complications were lurking. I still get scared now but I bolus for everything now and it feels so wonderful to have that control back. My anxiety isn’t much better, I still won’t go anywhere alone and rarely go out with my friends, but it is slowly getting better. I'm putting myself through counselling every week and i’m working hard on my issues."

That's a bite-sized slice of my story. Like anybody else going through a rehab programme, I have relapses. I'm going through one now. I have been grossly over eating and not bolusing because this week, the fear won.

Right now i'm sitting at my kitchen table as I write this, having just consumed 50g of carbs and not bolusing for them because I am so worried that I will go low and die. I know that my fear is irrational, I do know that. But it feels incredibly real that it paralyses my every move and consumes my every thought through each and every day. I'm taking medication. I go to counselling. I'm in a better place than I was before. I keep my pump attached all the time. I check a couple times a day and I bolus here and there. That has been my pattern the last few days. Right now I know i'm
So high that my eyes feel greasy and I already wanna pee and and I just feel exhausted, yet I can't sleep. I feel like that all the time when I go through these relapses.

I don't know why i'm putting this all out there. I think maybe being real about it and being accountable, not hiding it anymore may help me push through it. I'm scared that i'm going to get hate mail, saying how awful and careless I am, how selfish I am, or even how stupid Or ridiculous I am behaving. I've heard it all before.

I'm in a dark lonely place right now and i'm looking everywhere for a ray of light that is going to help me find my way out.

I'll keep going through the motions and hoping i'll land on my feet with complications. I am aware that I probably will not. But i'm doing what I can to stay calm. This all has to be for something.

So I hope. And wish. And dream.

Lucky

Everything has been crazy recently. I have returned to university after a long and calming break, which meant that my food choices, sleeping habits, daytime routine, and basically everything in my life was shaken up. My blood glucose levels reflected this.

The problem is, when my BGs run high for an extended time I feel like crap and I get stuck in a rut. I can't be bothered to basal test, I can't be bothered to change my pump settings, I just want to sleep. That is not conducive to getting better. At all.

It seems like the most best thing for me to get my BGs back on track is for me not to be feeling terrible from high BGs in the first place. But for now, I'll take a little help from my friends to get me back on track.

Diabetes is behaving better today. And I can appreciate just a little how lucky I am to live in a place like this, diabetes or not.

The depression makes it hard to get to that point. I savour every moment of "lucky" I feel.

The Boob Infusion Site

(Read: I did this boob site back in December. But I never blogged about it, so in case you missed what happened, here you go.)

A couple of weeks back, I was giving a correction bolus while I was interacting with the DOC on twitter, and for some strange reason, I wondered what it would be like to have my pump set in my boob. (This was also a week after I shaved off all. of. my. hair. I think that may have been crazy week.) Pain didn't come into my head at first. I just thought it was interesting. Now, I know that the breasts are made of different tissues and muscles and that we aren't educated to place the infusion sets there for a reason.

But did anybody ever try it? I asked twitter. I got some horror stories from a couple of the ladies, involving an unknown female inserting her set 'down there'. One word: Ouch. Some of the ladies were curious to know if anybody ever tried it, but we couldn't find a record of it. So I tried it.

I finished my breakfast and gave my bolus. Ripped out my old set (it was time to change it anyways) and I jumped in for my 'free' shower. I was all gung ho and ready for this baby. Then I sat on the bed and looked at the Inset and I thought: "Oh. This is going in my boob." I felt a little sick and shaky but I really wanted to do it. Just to SEE. So I inserted it on the top of the fatty part of my right breast. I was aware of the needle going in and coming out, but there was no pain or discomfort. It just felt...well it felt weird. It was in my BOOB. But there was no..OMG.

My wonderful photo editing skills below show where I placed the infusion set. In case there is confusion, the red one is the infusion set.  (I have a tendency to complicate things).

So I left it there for a couple of hours. Still no pain. I checked the site regularly to make sure it wasn't getting red or swollen. I was afraid that the insulin wouldn't absorb properly and just pool there, but it didn't appear to. I checked my blood sugar regularly and they held very steady, too. It was just hanging there, in my boob, like a normal site.

I went about the day as normal. Went shopping with my sister. Even ate some candy. And maybe some fast food. I bolused with the boob site. And 2 hours post meal, my blood sugar was normal, the site was still comfortable, and appeared fine.

But it was in my boob. And it was freaking me out. So I pulled it out.

Now I know.

A Chill in the Community

In general, I feel a lot of warmth from the DOC.  But this week, I saw more hatred and harshness, than warmth, and that saddens me greatly.

This week, there has been a lot of negative reaction to Paula Deen coming out about her Type 2 Diabetes diagnosis. I don't know her from the TV, being in Ireland, I never even heard of her until all of this speculation started amongst the DOC about her diagnosis.

I felt incredibly disappointed about how some of my fellow PWD's responded to it all. This community is supposed to be about helping each other fight and get through our illness. Not place blame, mock, or "I told you so". When one of us is feeling crappy from a high blood sugar, we don't tweet back and be all, "HAHAH!! Your own fault, dumbass! Shouldn't have ate those carbs now should you?!". We don't do that. So why did so many people WITH diabetes, do that to this woman? You don't know her story, her background, the struggles she faces in her own life.

Diabetes, no matter what type, is nobody's fault. Unhealthy lifestyle choices may in some cases be a trigger to the development of Type 2, but that is neither here nor there. The fact is, she has Diabetes now, why not just leave her be, and give her some support? Why place the blame game, the why and how? Who cares. The fact is she is now part of our club, the club that nobody wants to be a part of. It's not fair and the audacity of some people to place judgement and fire hatred towards her makes me feel worried and sort of alone. Some people have forgotten what this community is all about.

Not everybody reacted badly. There has been a lot of support for Paula from some of my fellow PWD and you are awesome for that. You know who you are.

We love each other, we support each other. We are family. We all have this disease and nobody likes it, wished for it, or deserves it. Reach out your hand and help a sister out, for crying out loud!

Catching Up

In October, I stopped eating. When I say I stopped eating, I don't mean that I completely stopped eating. I stopped eating properly. I would have a couple of slices of toast in a day. I felt sick. I woke up feeling sick. If I so much as drank water in the morning, I would throw up. My mum came up to visit me. She bought me lunch and I sat and tried to eat. Trying to eat that salad was one of the hardest things I've ever done. Eventually I couldn't stop tears running down my face as I realised that she and my sister had eaten a whole pizza and I had managed one bread stick and a couple of pieces of lettuce, and I excused myself to the bathroom because I thought I would vomit.

Food has always been one of the first things to go when I get anxious. If I have an important examination or another stressful situation, I'll skip food. Usually I manage to get some kind of sugar in me for energy, but I can't eat. I just hadn't ever felt like that for so long before.

It was a vicious cycle. The sicker I was when I ate, the less I wanted to eat. The less I ate, the more stressed I got. The more stressed I got, the sicker I felt.

Objectively, those weeks were not the worst of my life. I have had some really difficult times in my life, where really shit things have happened. But there's a difference between something happening to you and something happening in you. In October 2011, wonderful things happened to me. I started to study at one of the best universities in the world. I met some incredible new people. I was doing academically well. But something terrible happened in me.

Looking back, I have no idea how I got through. That sounds exaggerated and horribly false, but I am being truthful. I was a complete wreck, and I honestly have no idea how I made it. One day when I was at my worst, my mum called me. She told me that my grandma died. That happened to me. And somehow this awful thing - the death of somebody I loved - made something better happen in me. The week before my grandma died, I got this card from my 12 year old sister.

She was proud of me. And she was dead. And I ate. I've been fighting depression for a long time now, but the difference between the rest of my time with depression and anxiety and those weeks in October 2011 was that in October, I wasn't fighting. I had fallen, and I had no idea how I was supposed to get out of the place that I was in. I believe that my grandma gave me the strength to carry on.

I feel better right now. My last term at university was amazing and beautiful but the place in my mind was terrible. I'm only now trying to catch my mind up with the things I have achieved and the beauty of the city surrounding me.

It's still feels impossible sometimes, but I'm fighting now. I'm catching up.

NB: Like I said, I've had a depressive disorder for a very long time now, but this particular tailspin was hell. I haven't recovered and I expect that at some point I will be ready to talk about it in better detail. I think that it is important to post about things like this, though. Sometimes I feel very alone, because we are taught that this is not okay. But it's not about whether or not it's 'okay'. For me, this is an illness as much as diabetes is an illness, and I don't want anybody else to feel ashamed.

Distraction

Turn the music on.


Block out the feelings. Block out the memories. The smells, the illustration.

Feel the pressure and the fuzz and the confusion, and the blur build behind my skull until it becomes one big noise.

Turn the music off.

Silence.

For a second. The feelings and events come flooding in, my body immersed in this cold, damp, alien feeling. It's coming back. What is this? Is this okay? I need to face this at some stage, deal with it. That panicky paranoia is poking at me now. "Hi there." *Waves awkwardly*.

It's too much. The fear is too much. I feel alone. I can't face this all by myself.

Turn the music on.

Until somebody holds my hand and shows me that it's okay to turn it off.