Saturday, 17 May 2014

What makes me feel down

Before I start this blog post let me just say this; I do my best every single day to stay positive about this disease. I try my best to be strong and remember that I can't let type one diabetes get me down...and I count my lucky stars every single day that I am not living with something much worse. However, that doesn't deny the fact that this disease puts a lot of strain on me physically and emotionally, and what needs to be understood is that type one diabetes still has the potential to kill and it still is so so hard to deal with despite it not being as bad as other things. I wish I didn't have type one diabetes, I really do. But I am positive about it anyway, so I will finish on this note, when I write this blog post and tell you all my thoughts and fears about type one diabetes; remember that I know I am strong enough to deal with it all, but sometimes I just need to vent, and let it all out. I don't like talking about what I fear with type one diabetes because I think it will make me appear weak, but I know I'm not. However, this is still a big step for me to reveal it all.

I'm all for seeing the silver lining in a life with type one diabetes and how it makes me stronger etc. But before it makes me stronger I have to endure it and I obviously do not like that part. It's been almost five years since I was diagnosed and I have been hospitalised five times due to high blood sugars; including my diagnosis. That's once or more every year since being diagnosed. Being in hospital with diabetes means you're either too high or you're too low; and each time my blood sugar has been too high, I've been in diabetic ketoacidosis, close to a coma, through no fault of my own. The hospital sucks; it's boring and you go through pain with the I.V's and blood tests and you can miss important things at school and it's just all round an awful experience. And what I hate is that type one diabetes puts me at the risk of that every single day. I know it can be avoided blah blah...but sometimes things just don't work out the way you want them to with type one diabetes.

What I will move onto next is something most people would prefer to leave unspoken. In my mind it's one of the worst things that type one diabetes can do. But I'm going to say it because what's the point in having a blog if I don't speak how I feel? Low blood sugar during the night, could potentially kill me. And it scares me every single night before I go to sleep. I always make sure that I do everything that I can to keep my blood sugars from falling during the night and I set alarms to check my blood sugar when I've made changes to basal rates etc. but it still scares me and it's still a thought that lies at the back of my mind every single night. Type one diabetes has taken away what it is to go to bed at night, it's meant to be relaxing and a time for dreaming about lovely things etc. but I don't relax. I just don't. It is not like that for me. I know that it is a rare occurrence but it happens, and I've only heard of a few cases but it's a few too many, people like Nicole and whenever I see a blue candle on Facebook my heart breaks. Type one diabetes means that sometimes just falling asleep at night can be one of the scariest things in the world.

Diabetes burnout. Diabetes burnout is what occurs when you feel so fed up with type one diabetes that you don't want to deal with it any more. When I say it is 24/7, I literally mean twenty-four seven. Diabetes does not sleep, it does not stop when I go on holiday, or when I'm spending time with my family or when I'm at school, or out with my friends...it simply does not stop. I hate feeling burnt out, because there is more to it than just not wanting to deal with diabetes that day, or for a few days even, sometimes even weeks, months! Who knows! There is more to it, every high blood sugar is slowly damaging my body; and so the longer I get stuck in the vicious circle that is "diabetes burnout" my Hba1c is getting higher and higher and so is my risk of long-term complications. And it is NOT easy getting out of burnout, I have struggled a lot with not doing what I am supposed to do with my diabetes care and for a long time I lost all motivation with it; I just could not bring myself to do it. I just could not bring myself to test my blood sugar or give insulin and it was this way for a long time for me, and when I did actually test my blood sugar or give insulin I had to force myself to do it. I know you may be questioning how can she not give insulin, if it is so important to her health!? but that's the thing with being "burntout" you just lose all motivation and the sheer intensity of looking after diabetes can be come too overwhelming sometimes.

I have no cure right now. I am completely insulin-dependant and when I think of it I remember just what that means. I literally can not live without insulin. If it wasn't for insulin when I was diagnosed almost five years ago I would not be living, before insulin type one diabetes was considered a terminal disease. I know that I am living and obviously I am grateful for that but the fact that I wouldn't be able to live if it wasn't for the vials of insulin that occupy a quarter of the shelf in the fridge, I would not be here.

It's exhausting. Diabetes does not care if it is a school night or not or if I have to get up early in the morning; if my blood sugars are bad then I can be up for hours at a time. Having to eat chalky glucose tablets and a slice of bread at 2 am is not pleasant; and the chances are you're not going to be hungry at that time earlier; but when it means that it will save your life by stopping you from falling into a coma during your sleep then you just eat. And high blood sugar, stabbing a needle into your arm, stomach or leg isn't exactly pleasant either, I am on an insulin pump but if I have high blood sugar during the night then I do a correction with my insulin pen so my blood sugars correct a little bit faster. But even if I stay up during the night or not, the constant fluctuations in my blood sugar make me feel so tired, I can literally go from having very high blood sugar one minute, to having low blood sugar the next, and this is a shock to the system! Your body is not meant to have fluctuating blood sugars, but mine does unfortunately because even despite taking insulin and trying to control my blood sugars, blood sugar swings are almost inevitable just due to everything that can affect them, which is a LOT of things, probably almost everything from illness to emotions.

Jokes. Why is it so funny? Not only does someone with type one diabetes have to deal with the disease itself, but we also have to deal with the misconceptions that surround it. People use the umbrella term 'diabetes' and say it's caused by eating too much sugar etc. Well type one diabetes falls under that term and it definitely is not caused by too much sugar. Most of the general public do not understand; and I don't expect them to but I wish they tried to. I wish people wouldn't make assumptions because it's frustrating. I want to be able to say to someone "I have diabetes" and not think that they are most probably wondering if I ate too much sugar. When someone hashtags a photo of sweets with "diabetes" they don't get that they're being hurtful to someone who actually has diabetes; people with type two as well as type one because actually I think I read somewhere that 20% of type 2 diabetics are not even overweight. Both types of diabetes are serious and that is a fact that has been lost somewhere between people's ignorance and social media.

I could go on for ages about everything that makes me feel sad about type one diabetes; but then that would make all of this too negative and I don't like negativity. However, like I said earlier just because I try my best to be positive about diabetes it does not mean that it isn't serious and that it isn't the reason that some times I just want to cry, because it just gets too much. Some times I just need to rant and this blog post is effectively, a bit of a rant. I'm sure there are more things that annoy me about living with type one diabetes but I don't go on about it all the time because I know I'm stronger than type one diabetes and all the crap that it gives me. I try not to dwell on the negative stuff as much as possible because then I will lose sight of the fact that I am lucky to not have anything worse, although it sucks A LOT; and with all of the support of my family and friends, I'll be ok.

-Ellie


1 comment:

  1. Stumbled upon this post while surfing G+. Just wanted to say thank you for sharing your story, and you're stronger than type 1. Keep up!

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