Monday, 20 January 2014

My needle attacked me

I didn't go to school today.

I was up all night last night correcting high blood sugar, diabetes is really stubborn at the moment and it's giving me a hard time. Feel sort of deflated at the moment. Anyway, it will get better, I've just corrected a 12 so let's hope for the best.

So I was laying down on my bed earlier whilst I primed my needle, and silly me I had it facing down towards me. Well I mean, I didn't think of it as a bad idea at the time but now that I remember, it was probably a bad idea to do that. I was talking to my sister and the next thing I knew, my pen slipped right out of my hands and landed on my torso, then proceeded to fall on the floor and the needle literally bent at a 90 degree angle.

"Ouch I just stabbed myself in the chest with my needle!"
"HAHA...what are you doing?"
"Oh I'm just checking I'm not bleeding...I am!"
"Oh tense"
"It left a prick mark, and it stabbed me through my top"

The unexpected needle pricks are the ones that hurt the most. They sting, a lot and they like to bleed, it seems like every time I get an accidental poke from one of my needles. it manages to stab a major artery that doesn't exist, but bleeds like there is no tomorrow anyway.

"Ok, I'm going to try and do it again now with out stabbing myself...well, I'm going to stab myself anyway but you know what I mean"

Easy...easy...easy...don't drop the needle!!! < That was my brain the whole time when I was setting up the injection again. I've probably never taken so much precision in lining up the needle with my skin and I've probably never held on to the pen so hard. I was not risking another ordeal.

Now the side of my torso feels a little bit sore, a place that is not meant for needles...looking back on it I'm so certain my needle wanted to attack me. So vicious.

-Ellie
[Peace&Insulin]



Monday, 13 January 2014

It's a lot of effort

I don't think that many people actually appreciate what it takes for a type one diabetic just to be able to get through the day. It takes a lot of effort and diabetes requires 24/7 attention- so even the simplest of things aren't so simple anymore after being diagnosed with type one.

First of all, before I even go downstairs in the morning I need to rummage around on the floor or in my bag for my blood sugar kit and my levemir pen. I test my blood sugar- if it's good then that's fabulous, the chances are I'll have a good day of stable blood sugars, low? I have to rush downstairs to drink some juice and have something to eat...I'll probably feel pretty lethargic for a little while afterwards though. High? Immediately feeling thirsty upon waking up, legs feel like lead, head is pounding...makes getting ready for school a massive job because of lack of energy; need to give short acting insulin to correct. Then have to wait a little bit to actually eat breakfast because I need to give the insulin a chance to work. Test for ketones- if yes, morning routine just got a lot more clustered...more testing, more injecting, more water. No? Continue as normal as possible with morning routine.

Morning:
Before type one, I never saw the importance in eating breakfast and felt that I didn't really need to, besides- I'm never hungry in the mornings. After type one, I now know that eating breakfast is essential if I want to avoid a low and feeling exhausted all day. Before being diagnosed if I did feel like breakfast I could just make a piece of toast or eat some cereal quickly...now, if I want some toast or cereal; first I need to calculate the carbohydrate content in the food, this normally requires some weighing scales, the food packaging and a calculator; once that is done it's onto insulin. I need to work out my insulin dose depending on my blood sugar and on the amount of carbohydrate in my food. Grab novorapid pen from upstairs, inject. Will I hit a nerve? Will it be okay? It's just my luck that I almost always seem to catch a nerve- let out a wince. Rub injection site to stop the stinging; go and brush teeth.

Teeth brushing can sometimes depend on my blood sugar. If I'm low or feel as though my blood sugar is dropping then I can't brush my teeth just yet as I'd have to eat again to correct hypo. If my blood sugar is good then that's fine, even if it's a bit high I can still brush them. It's just low blood sugar that proves to be the major problem. Before I could just go ahead and brush them...nothing to take into consideration.

Getting dressed- when I was on my insulin pump, I would either have to let it swing around freely from my stomach or I would hold it in my mouth until I was done. Neither were great choices but they were the only choices. Being on injections getting dressed doesn't pose as much of a challenge; however it is frustrating if I am dressed in a particular way that makes it difficult to get to my stomach or leg to do my injection.

Going to school. Before being a type one diabetic, my school bag was purely my lunch, maybe a bottle of water, maybe an umbrella and my books and stationary items. It's safe to say that the mass weight of my bag increased considerably five years ago...the additional items that reside in my school bag are my insulin pens, needles, spare needles, my blood sugar meter, spare test strips and lancets, if I have high blood sugar that morning then I would bring my ketone meter to school with me, if I have low blood sugar that morning I would most likely bring in extra gluocose tablets...not to mention two or three bottles of water just on a general daily basis- this is in case of a high blood sugar because trust me...I drink so much water when my blood sugar is high. I also have extra blood sugar meter and ketone meter batteries somewhere in my bag.

Being at school:
Like I said type one diabetes requires 24/7 attention and this doesn't stop when I get to school. Normally, when I get into school I will test my blood sugar to see where they stand after breakfast time. If they are fine then I can get on with my day, if they are high I will be thirsty, tired and feel very weak, need to test ketones, do more blood sugar checks and give correction doses of insulin. This will make it a billion times harder to get through the school day. If they are low, then I will need to correct that low blood sugar and probably won't go to class or participate in my first class for about the first half an hour. The intense demands that diabetes puts on my shoulders are very difficult to fit into my school life.

Break time is the same, high? low? good? routine. I normally have a snack at break time. I have to look at the little piece of paper that my mum writes the carbohydrates on for me in the mornings, I then need to add these up and calculate the carbohydrates. My friends can just get on with their food as normal...five years ago I used to partake in that same "normal" routine. Now my "normal" is very different.

Diabetes can interrupt my classes. If my blood sugar is unstable either high or low, it makes it very difficult to concentrate in lessons. High blood sugar makes me feel very tired and fidgety, and uncomfortable. A bout of low blood sugar will make me feel sweaty and lethargic. testing, insulin or glucose tablets normally occupy a significant proportion of my lesson time. If I manage to get my blood sugar back to normal again then I can continue with my lesson- before type one diabetes I didn't have to worry about any of this.

Lunch time is pretty much the same as break time. Then we all get to go home. I normally like to check just before leaving school to make sure I don't go low on the way home, if I feel an imminent low blood sugar I force myself food to correct it. Sometimes if I am high this requires an injection on the bus and draws some strange looks.

If I have had a day of high or low blood sugar I am very tired when I get home. I fall asleep on the sofa most evenings. Dinner time requires more testing and injecting- I tend to finish my food a little bit later than everyone else because I'm pre-occupied with dealing with diabetes before I can even think about eating my food. I used to have a lot more energy before being diagnosed diabetic.

Bedtime:
It's more effort than you think.
I have to inject my levemir and then test my blood sugar, if they are okay then I can go straight to sleep, however I need to take into account things like exercise that I might have done that day that could affect my blood sugar through out the night. If they are high I need to stay up a bit longer and do correction doses and keep testing my blood sugar- this is especially annoying if I am extra tired that day, the same goes for low blood sugar but instead of doing correction doses I am force-feeding myself glucose tablets. If you look beside my bed before I go to sleep there is normally a big glass of water and glucose tablets, I remember before being diagnosed type one and I could easily get through the night with just one sip of water.

During the night:
Sometimes I can wake up sweaty and shaky, this means my blood sugar has dropped during the night and I need to correct it fast. Whenever I wake up with a low blood sugar I almost feel a sense of relief because I actually woke up to treat it before anything terrible happened. If I have high blood sugar I may not be able to fall asleep at all because my night would be occupied with running back and forth to the loo, injecting insulin, testing blood sugar and running up and down the stairs to get drinks of water. Nights like these absolutely exhaust me.

Then when I finally get to sleep, I do it all over again.

A life with type one diabetes requires a lot of effort- it also takes a lot of responsibility. It is tiring but it is also rewarding because on the days that  i triumph with my blood sugar I feel a great sense of pride. When I walk into school in the morning, only I know how much background work was put into me even being there; people don't realise exactly what it takes.

And even though I've told you what my days are typically like with diabetes...if you aren't diabetic, or if you aren't a parent to a diabetic, then it is unlikely that you will fully understand even a fraction of what it's like. I can tell you what happens, but I am the one who lives a life with type one- who feels every finger prick, injection and blood sugar fluctuation.

But with out doing all that I do each and every day, I wouldn't be alive right now. I feel like I'm my own life-saver every second, minute...hour of the day- but it pays off because I want to feel good throughout the day. I have days where I slack in doing what I'm supposed to but try doing all of that each and every day and it gets tough...

but I know that I was given a life with type one diabetes because I am strong enough to live it.

Being diabetic

2014 is the year that will mark five years with Type one diabetes.
June 21st 2014 to be exact.

As the days, months, weeks, years...go on, the times of a life with out diabetes become distant- the longer I live with diabetes the more it is entwined in my memories. Looking back five years type one diabetes has been there every single step of the way, all through my 12th, 13th, 14th, 15th and 16th birthdays, through secondary school, through my GCSEs, through starting A-level, through family holidays...everything. But then again, so have my family and friends- supporting me. At eleven years old not once did I ever think that type one diabetes would grow up with me.

Being diabetic is not easy. It's a disease in which it all falls on your shoulders to try and control it. It is up to the diabetic to carb count, test, inject, record blood sugars, endure highs and lows, it is so much to do every single day but you do your best to get on with it because it is the only choice you have.

Although a time with out type one moves further and further as I grow- it doesn't mean that I will ever forget that it was there in the first place. I was diagnosed at eleven years old, nearly twelve. I lived my life just as every one else around me- my life was not dependent on a vial of liquid in the fridge. Perhaps that's why I have a lot of days where I struggle to do it. Maybe my mind is having trouble letting go of a life that was. Perhaps I subconsciously slip back into five years ago when I was "normal". But I accept that only a cure can make that happen, and I accept type one diabetes. Sometimes I guess my subconscious longing for a sense of normal for me and my parents & family is what makes it harder- then again, it's probably because I'm a teenager. I feel like I was diagnosed at an awkward age...turning twelve, fresh into secondary school, nearly a teenager...I was all over the place. However, I dealt with it and I don't think I complained about being diagnosed because it was something I had to accept, and I did and still do. But sometimes its rough and I don't want to be diabetic anymore, but I always pick my self up off the floor.

I remember (what I know now to be) my first low blood sugar. I think it may have been about a month or a few weeks before I was diagnosed. It was during the last few minutes of an hour long car journey to Clacton that I began to feel "strange". I got out of the car and my legs were so jelly-like I felt as though they were going to give way from underneath me. Once we got inside all I could do was sit down, I had no energy whatsoever and I was ravenous. Lunch rolled around after a few minutes and I ate at lightning speed- within fifteen minutes I was feeling okay again. I never told my mum about it at the time because I didn't think anything of it. I was so un-aware that my body had waged war upon itself and my insulin-producing beta cells would suffer as a result.

I see photos of myself when I was younger and I think "life was so simple back then" and it was. I knew only a life of simplicity like many other children. But it all changed and I never would have guessed. I was diagnosed at an age where I was old enough to "understand" to some extent, what was happening with my body and what had happened. It could no longer produce insulin and I needed to inject myself with insulin and test my blood sugar. I was diagnosed with type one diabetes and I took it in my stride, but I never understood how much of a struggle it could be.

As time drew closer and closer to my diagnosis I almost, "knew" I had diabetes. At eleven years old I was preparing myself for a life with a chronic disease. I recall going onto YouTube and watching videos of people doing their insulin injection and when the day came that I had to do my first one, I already knew how to. One, because my symptoms were so prominent and two, I had a fasting blood sugar test that came back at 16mmols. Believe it or not, that is not what diagnosed me. I went back to school that day as "normal" having been told by my GP to "avoid carbohydrates" for the weekend, until that Monday where he would re-do the test to "be sure". I didn't have much of an idea of what he meant by avoiding carbohydrates, he pretty much left me and my mum in the dark. At school that Friday I tried to, so I switched my Nature Valley cereal bar with an apple. I know now that even the apple required a dose of life-sustaining insulin.

It's safe to say that I didn't last the weekend with out being diagnosed. On that Friday and the years before that, I was not a type one diabetic. On that Sunday and for the rest of my life- I was to be, and am a Type One Diabetic.

I wish I didn't have diabetes- and I wish it never existed but it does. At eleven I found myself coming to terms with an incurable, potentially life-threatening disease that has put me in hospital three times since, is the reason my life depends on a vial of liquid in the fridge, and involves carbohydrate counting, testing my blood sugar, glucose tablets, high and low blood sugar, hospital appointments, sleepless nights...

It's a rocky road with type one, but what is good is that there are times when the road is smooth and the silver lining in the clouds is brighter than ever. Diabetes has changed my life in a bad way, but it is also the reason for some wonderful moments that have come about in my life. Maybe what makes things OK when I struggle- because some good can come out of my struggles with type one- they all make me stronger and make me more determined not to let it beat me. Despite the challenges I face, I am so grateful for the life I have, for my family, my friends, the times I've laughed, the times I smile- which is thankfully, quite a lot. When I'm having a down day with diabetes I look outside, I look at the beauty of the world we live in; the birds, the trees, the sun...nature knows no adversity- it is pure, it is what makes up our world.

I truly believe that one day I will say I used to have type one diabetes, but for now...it is one step at a time.

Sunday, 5 January 2014

Switching back to injections

On June 14th 2011 I was given my purple insulin pump- which I named Maurice.
In December 2013, I decided to switch back from my insulin pump to injections.

When I tell someone this, the first question they always ask is simply "Why?"
I gave up my insulin pump because I realised something this year, that I relied on it too much. That probably sounds peculiar because people think; but that is it's job? It's there for you to use and rely on. But when I say I relied on it too much I literally just relied on the basal insulin. I feel like maybe it made me too "lazy" in terms of diabetes. Looking back I think I just thought "oh well the basal is there it shouldn't hurt to miss a bolus..." then it became a vicious circle and I dropped out of a routine, bolusing for food just wasn't something I naturally did any more, it all became sort of alien to me.

This whole year my Hba1c has varied from 11-12%. I am sick and tired of seeing such a high number; I just want to be a "good" diabetic and see a perfect Hba1c, my consultant suggested a pump holiday- so that is what I did. In early December I got out my pen and notepad, brought up the settings on my insulin pump and wrote it all down, then I taught myself how to do a correction dose again, how to give insulin for meals and how to work out my basal insulin all on an injection pen. Then I took off my insulin pump and haven't put it back on in just over a month- and if I'm honest, I haven't felt more in control.

Right now, I just feel as though there is something about using insulin pens again that I like. I, personally feel more freedom with out my insulin pump on. The small things like simply getting dressed are slightly easier now because I don't have to figure out where to balance my pump while I put on my leggings or my jeans, no more deciding where it will go when I where a dress, no more infusion set changes every three days, no more bulky extra supplies, no more catching the pump on door knobs, no more possible dodgy sites, no cannulas falling out while I'm sleeping...Everyone is different though, these are just the things that I have picked up since being off of the pump that I never really noticed that bothered me before.

It leads me to ask myself the question, maybe I don't like the pump? But then again, I know I do like it. When I did things properly it was just the best thing, but then I look at my Hba1c from before the pump, to after the pump, there is a big difference. Higher. My Hba1c just climbed so much over the past two and a half years and whether or not that is to do with being on the pump or me just being a teenager and trying to navigate my way through my teenage years with type one, I do not know. But what  I do know is is that since being off the pump for the past 4 weeks, my Hba1c dropped from 12% to 11.4%. Something which I am very proud of.

Every now and then I miss the sort of "freedom" that the pump gave me. The freedom from 5 plus injections every day, the freedom from the lumpy patches of skin on my stomach and legs, I could also use the CGM with my insulin pump, something which I really liked. But I made the sacrifice in my best interests, I felt that it was time to make a decision and I feel more under control than ever while on injections. I sort of like the effort you need to put into injections, there is no basal insulin to solely rely on, apart from my Levemir but on the pump the basal insulin was fast-acting, so the effect was immediate.

For now, I am on injections. Whether or not I will go back to my insulin pump I do not know. But I am enjoying my break from the pump. I know each diabetic is different, for some the insulin pump is perfect and a straight-forward solution, for others, like me, not so much. I know I will get there in the end, to that perfect Hba1c, I just have to keep trying and with all the support I get from my parents, family and friends, it will be fine.

You know what they say, keep calm and carry on.

-Ellie
[Peace&Insulin]