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Wednesday, 27 June 2012

Age Matters

Since my diagnosis I have often wondered how my life would have been different if I had been diagnosed earlier. I don't think there is ever a good time to be diagnosed with Type 1 Diabetes, and in no way do I think that a child diagnosed would have ever had it easier. I just wonder how different it would have been because the only side I know is the adult side.

I'm sure there are up points and down points to both sides of the age coin when it comes to diagnoses of D. I was lucky I was diagnosed when working for an endo so I already had a good understanding. At the same time, I wish I wasn't. The pressure was on almost immediately to get my BGLs under control; perhaps that's why after my baseline HbA1c of 9.8%, my HbA1c 1 month after diagnosis was at 7.3%. And I am expected to keep improving, becasue I work with a wealth of knowledge about my disease.

That much pressure is probably why I am already facing my 1st diabetes burn-out, and am refusing to do needles now, even when I need them. I was chastised last week by 1 of the DEs becasue I just don't give a crap how many carbs are in an apple. If in doubt, assume 30. I DON'T CARE!! Burn-out is why I have broken so many needles by flinging them across the room in fits of hot temper at how much I HATE needles. Its why I no longer record my BGLs, let alone check regularly.

I know juveniles who are diagnosed will go through burn-outs just as I am. But I wish I had the support that their parents can give.  As a kid, my parents would have had to have been there. My dad didn't answer his phone when I tried to call him to let him know. He came to visit 2 weeks after diagnosis and commented that I 'appeared to be doing well'. No, I am not doing well. They didn't know because they weren't there. I wish they were there with me to see how it really affects me. My mum, I love her, but there is only so much you can do and know about the disease from 1000km away.

I guess I am looking for that stability and support that I would have probably received if I had been diagnosed as a juvenile. The access to support groups via camps and other such networks. An easier start to the pump, rather than deliberately sabotaging my HbA1c to qualify for the pump consumables scheme, simply because I was diagnosed over the age of 18. I'm not sure how they figured this out, but NDSS should realise that just because I was diagnosed as an adult, doesn't mean I can handle it. I can't.

At the same time, I am so thankful I was able to run and play as a child without the fear of hypos. That I could shovel lollies into my mouth without BGL repurcussions (Unfortunately as child, I didn't actually like lollies. If only I had known). That having an adults understanding right from the get-go means I have a small headstart in getting my BGLs under control to hopefully prevent the cocktail of related medical conditions that come along with this disease.

Mostly, because I don't know how well my parents would have coped if I had been diagnosed as a child. I think this was the first opportune time my body had to do this to me when there weren't other complicationg factors. Like uni. Like being the eldest child in a single-parent household. My mum had enough on her plate without having a diabetic child. And my dad has his depression. To the extent where, on weekends, we would visit and he would sleep all day. So our one and only meal usually came at close to 9pm when he would wake up. I don't think I would have survived that with diabetes. I don't think my parents would have survived my diabetes.

So an adult, I have to be.

Friday, 22 June 2012

Honeymoon's aren't just for lovers

After weeks of multiple hypos I finally went back to my Zumba class last Saturday. My instructor rubbed my arm to make sure I was real. Which was quite awkward, but that's how she rolls, and I'm OK with that, considering one day she will probably be squeezing my finger trying to make me bleed onto a small strip.
Eventually I was asked where I had been. And my answer was 'Honeymooning'. Which I always forget non-Type-1-diabetic's don't understand because everyone immediately looked at my ring finger (still bare). So then we went into the honeymoon explanation, whereby my pancreas has decided that it doesn't like to be outshone by anything else and makes a half-arsed attempt to get all jesus-like and raise itself from the dead. Or maybe like a Zombie. Yeah a Zombie. I have a Zombie Pancreas. Its like a little alive, but not really.

Anyway, we discussed how the honeymoon period sucks and screws everything up, etc etc. Which is quite rude of it really, because so far I have only been told how wonderful the honeymoon period is. In fact my Endo was super excited about it and said she 'hoped it would stay for another 6 months or so'. I wanted to punch her. Mainly because:

1. - She banned me from exercise that day. Although I can go again now I really really wanted to go that 1 specific day. I totally felt like exercise. But you know, 5 hypos on no insulin except your long-acting is kinda crap. I guess she didn't want me dieing or whatever.
2. - It put my plans for Lewis on hold. And I really, really want Lewis. So bad right now.
3. - Yes, needles suck and I hate them. They hurt every damn time (which, by the way, the medical world will lie to you about and tell you that so long as you do them correctly you won't feel a thing. Don't believe them. You can't convince someone to hurt themselves intentionally at least 5 times a day by telling them how much it hurts). Honeymooning makes needle time even harder because you're doing it for 1 unit. ONE FRICKEN UNIT. Feels like such a waste to go through all that pain just for one unit.
4. - Hypos. Like BHAM. Everywhere I look.
5. - I just want to know my carb to insulin ratios. Currently I do not know my ratios because they change at every butterfly fart.

So here's hoping my pancreas doesn't get its fix of brains and continues on its merry way to an early grave. Its getting between me and Lewis.

Sunday, 17 June 2012

A Day In the Life of Me, With D

7.30am – This is a sleep in for me. I wake up and I know I have to do a BGL check and I know that it is a full hour after my usual breakfast time. But I don’t want to get up yet because its cold outside and I’m still sleepy. It’s the weekend and I should be able to sleep in. So I roll over and fall back to sleep, slightly worried about not doing a BGL check.
8.30am – I get up and do my morning BGL check. 5.4. Not bad. I congratulate myself on my 1st morning BGL below 6 in a week. I eat breakfast (sugary sugary Kellogg’s Crunchy Nut) and skip my insulin because I’m about to go to a Zumba class. I usually exercise at night, so I have never skipped insulin before and I’m not too sure how this will work. Oh well, here’s hoping it goes ok.
9.30am– Arrive at Zumba and do a pre-exercise BGL check. 11.1. An hour after breakfast so that’s not too bad. I do the usual run through with my instructor as to where my jellybeans are kept and how to use my pricker in the event of my not being able to test my own BGLs. Exercise is a scary thing, because so many of my hypo symptoms replicate normal things that happen to your body during exercise and/or do not occur during exercise. For example, sweating, which is usually my biggest symptom, and shaking both happen to me during exercise. My other biggest symptom, being cranky about nothing, doesn’t happen because exercise makes me happy.
Halfway through I do another check to see how I am fairing. 7.8. Apparently I look disoriented at this point and the instructor, Sonja, asks if I’m feeling o.k. and I need any jellybeans. I tell her I’m fine and a look of relief spreads over her face. I’m sure the last thing she wants is to have to figure out how to help a diabetic in a hypo. I’m pretty sure everyone in my class is slightly afraid I’m going to just randomly become comatose in the middle of a song, because everyone ALWAYS makes sure I’m feeling o.k. Every 10 minutes. If it’s all the same to everyone else, I’d just like to get on with my workout.
10.30 – end of workout. Check my BGLs. 5.4. I know by now that this means as soon as I’ve had 10 minutes to rest I will plummet. So I eat a few jellybeans in preparation. Once I’m home I have the world’s biggest glass of orange juice. I want to clean my house but I know that will definitely make me hypo, so I leave it for another day.
12.00pm– Lunchtime. BGL check is 4.8. I have a big-ass bowl of stir-fry and a glass of apple juice. In total this meal contains approx 60gm of carbs. Yes, I count carbs. Every time I want to eat I count carbs. Preparing my needle is now 2nd nature whenever I think of putting food in my mouth. At the moment my stomach is quite bruised because I’ve been getting sloppy with my technique and I’ve stopped looking. The needle hurts and I consider needling somewhere else for a while but can’t bear to move it to another area. The idea disgusts me. I do 4 units of insulin, stupidly forgetting I just finished a workout. So I decide after lunch I will veg on the couch and hopefully I won’t get a hypo.
1.00pm– Scratched myself accidentally on the arm. Use the blood to do a BGL test. My fingers are amazingly sore from testing lately (must be winter). I’ve been trying to move my testing sites around but my body just doesn’t want to bleed. Damn non-bleeding body. BGL 3.3. No hypo symptoms yet. If I wait another 10 minutes it will go down into the 2’s. Generally I am unable to even tell you my name at this level, so I pop a few jellybeans and raid my cupboards looking for yummy hypo food. Eat lots of stuff. Eeeep.
3.10pm– BGL check 10.2. Over-corrected my hypo. Shrug it off and do housework to bring my BGLs down.
6.45pm– BGL 6.0 before dinner. Yay! Eat chicken thingies (Yes, that is what I have named them) with vegies, including corn and potato, which both contain carbs. Too lazy to figure out carb amounts and they are the only carbs I am eating so I skip insulin again as we’re about to head to the cinemas anyway and I will have to do insulin then anyway. I hate hate hate needles and pretty much refuse to do more than the 4 I’m supposed to do each day (1 for long-acting, 1 each for breakfast, lunch and dinner). I’m such an awesome diabetic.
8.20pm– Movie about to start. Check BGLs 8.3. Inject myself with 7 units of insulin for an unknown quantity of carbs (which pretty much means I can’t be bothered trying to count. Honestly, why did I get the disease that involved maths AND needles? Somebody really really really hates me. A lot.). Actually, I can figure out the chocolate but popcorn just doesn’t work for me. I have tried and tried again to figure this out. Always high after, no matter what ratio I do for it. (And yes, both popcorn and chocolate (1 bar = 30g = 3 units). I’m Type 1, not Type 2. And as previously stated, I’m an awesome diabetic). Watch Men in Black III and have a few hours break where I forget I’m a diabetic.
10.15pm– Last check of the day as we leave cinemas. 9.2. At least it’s not the 15 I had last time I ate popcorn.

Friday, 1 June 2012


I figure I have to get this out before I can start to move on and accept my D. Start from the beginning. Everyone has one, a beginning. And this just happens to be my second beginning. I had a life before D. Now I have a life with D.

So this is the story of my diagnosis.

I work for an endocrinologist. She's an extremely lovely lady who believes knowledge is empowerment and tries to educate her patients as much as possible. And so she educated me. I didn't come from a medical background. I finished my degree in film, decided I hated it and basically picked a job name by flicking through one of those careers books they give you in high school. I decided on medical reception. And somehow, against all odds (and over 100 other applicants) I got the job. Knowing I didn't have a medical background but that I appeared bright enough to learn, my endo would often come out to explain many of the medical issues that her patients came to see her about to me. I don't like to feel stupid either, so I spent much of my time in between typing up patient letters googling large medical terminology that I found in said letters. As a result, I had a pretty good idea of the rough characteristics and treatments of each ailment of the patients who walked through our doors.

2 weeks before my diagnosis we had a young, newly diagnosed Type 1 diabetic girl given an urgent referrel to see us. Not having had one of those (a newly diagnosed T1. I had seen plenty of old hats walk in and out) pass my desk before, I was almost going to give her a regular waiting time appointment (which is about 2 months wait), but after chatting with her mum, asked for the referrel to be sent through so I could give it to the Dr. to see. The poor young girl was basically rushed in to see us the next day. As with all other patients, I typed up her letter, which included her symptoms at diagnosis.

I typed and fear mounted in my stomach.

Fatigue. I had actually fallen asleep at my desk 2 days prior and was woken up the QML courier. Every other day I was sleeping on the bus on the way home and would go straight to bed as soon as I got off the bus.

Polyuria . I usually get this whenever I have a cold. So I just thought I was getting a cold. A really bad one that didn't include sneezing, runny nose or stuffy head. Who wants that anyway? I would much rather just take the peeing.

Polydipsia. I wanted to drink the world. I would skull a bottle of water a minute and immediately want more.

Nocturia. I blamed being tired on this. Of course I would be tired if I was waking up to pee every hour.

And the list went on: Weight loss, headaches, confusion, etc. etc.

Feeling dread engulf my body I forced what I had learnt in typing this letter to the back of my mind. And succesfully stalled another week before seeing my GP, which I only did once I couldn't think of anything besides drinking water all day long. So I toddled off to my GP and asked him for an iron test as I was feeling tired (yes, yes I did omit needing to pee and drink all the time). Because being the clever dick I am I knew he would run a full blood count just to make sure, and a FBC includes a fasting glucose. Because I was still heavily in denial.

So I get my blood test done, go back a week later and ask for my 'iron study' results. GP looks it all over calmly and says that everyhting is fine. And I relax. Then comes the question "But why didn't you ever tell me you were diabetic?". My answer was "Because I'm not". After seeing him for 4 years, I think this would have been obvious that it was something I would have told him. Silently, he gets up and leaves the room. Then he returns, takes my hand and gives me my first ever finger prick test. 25. This is followed by him staring at my face, which made me incredibly uncomfortable because I wanted to cry. Which is probably why he was staring at me, to see how I would take this. Me being me, and I am me, I do start to cry (I cry at everything, just so we're all clear).

I'm packed off with a referral letter to the nearest emergency department and sent on my way. So I walk out of his office, make it to the toilets and call my partner to let him know that he needed to come and take me to hospital, and berate him for not being there when I was diagnosed (even though I'm not sure he even knew I was having a blood test because of the whole denial issue). Then I called my mother, who went silent, hung up the phone, and who I later found out, called my sister to cry. And then later my sister called me to cry.

After all this I arrive at hospital and they take my finger-prick BGLs again. It was a 25.1 at the Drs, and is now a hearty 29.8. I guess stress really does spike you. I spend the night in hospital and call the Dr I work for because she also happens to work at the hospital I was admitted to. She sets her registrar to following me around and Im seen in record time. My first night alone and I really wanted to just lie down and feel sorry for myself but I was too distracted trying not to yell at the lady in the bed next to me who made constant (REALLY LOUD (capitalised for emphasis)) "mew mew mew" noises ALL NIGHT LONG. So no sleep for the now diabetic Ashleigh.

The next morning I was greeted by a very cheery nurse holding a very large syringe. I’m not entirely how long the syringe needle end was, but I know it was multiple upon multiple times larger than the 4ml pen needle tips I use now. Cheery nurse smiled and informed me I was supposed to do my very first insulin injection by myself with the syringe. I flatly refused and it became obvious to her rather quickly that I wasn’t going to be participating in this fun activity they had lined up for me that day. I couldn’t help but think that this was not at all the correct way to go about introducing a pt to insulin injections: “here, stab yourself with this giant needle which looks as though it will go through your stomach and out your back on the other side is actually nothing like what you’ll be using after leaving here”. It does not help patients to scare them. I think I would have coped much better if I had been shown the 4mls that I use now and introduced to them first.

Eventually later that day I was discharged to begin living my new and non-improved (but rather impaired) life. As a diabetic. As me.