I have been meaning to write this blog post for a little while now but have never found the time or the right moment, but in light of Sierra Sandison, a type 1 diabetic who recently won 'Miss Idaho 2014' walking out onto the stage wearing a swimsuit and her insulin pump and posting the photo on facebook; I figured this is probably about the right time to talk about this particular subject.
Sierra posted the photo of her walking down the runway, insulin pump in tow, and wrote how she finally faced her fears and showed off her insulin pump...proudly. From being a part of Type One Teens and (obviously) being a diabetic myself, I know a lot of people feel ashamed or embarrassed of their insulin pump and they don't like to show it, and choosing clothes can be a struggle because anything that shows off their pump is out of the question, and it frustrates me. It makes me frustrated that society's idea of being "beautiful" and "fitting in" means that people who wear insulin pumps feel alienated and their insulin pump makes them feel ugly. It's not true. And it frustrates me even more because an insulin pump is not all that a person is and it most definitely does not define a person's value or their beauty.
I've seen various posts on Type One Teens from some of the girls talking about how they feel ashamed of their insulin pumps- and it might be easier for me to say this and realise this because I personally see no shame in my pump but I used to feel a bit embarrassed when I first got it, but this is what I've told them.
I think of it as though nobody can even see my insulin pump. When I'm out in public I just continue with whatever I'm doing, and there have been many times when I've been out in public and caught people blatantly staring at my insulin pump. It's curiosity. They are most probably looking at it trying to guess what it is, I can almost guarantee that they are not looking at it thinking "That's really ugly" or "That thing on her waist ruins her outfit". When I see people staring at it I either look back at them or I do nothing; I don't move it away, I don't cover it up, I do nothing. Perhaps if I see someone staring at it I should stare at the water bottle in their bag or at their phone- they're normal everyday things, right? They're nothing out of the ordinary, and if someone caught me staring they would probably wonder why I'm staring at something that really isn't all that interesting...that's probably what most of us as diabetics feel like to some extent when our medical devices are being stared down by a random stranger in public, because medical devices like insulin pumps and blood sugar meters are a diabetic's "normal" and I think of it as, my "normal" diabetes life does not stop in public, it continues outside of my house regardless of how peculiar my actions may look- and it frustrates us so much and makes us feel so self-conscious about it because for us giving insulin and checking blood sugar is a part of our daily lives, just as checking e-mail on the train is a part of someone else's daily life. (Although diabetes management is a bit more important than emails- but I'm hoping you get the idea of what I'm trying to say)
At times I like showing my insulin pump, when I look down at it it's a reminder of just how hard I fight everyday to be healthy and I'm proud of that. Plus an insulin pump is a major part of the battle with type one diabetes so embrace it for being such a fabulous piece of equipment! Here is another way of looking at it, random strangers in public do not know that you wear an insulin pump, so they most probably won't be looking for one! And even if they do notice it sitting on your waist or stuck to your arm just continue what you're doing- do not let your thoughts wander into a mad frenzy of "Oh my goodness my pump must look really bad right now!" or "How can I hide it, they must be judging me". Never ever forget that an insulin pump does not define you as a person, it is a small part of you, not the whole picture- and I can guarantee that most of the time, if not all the time, when someone looks at you they see you as you, and not as someone who wears an insulin pump.
You do not need to be ashamed, nor do you need to feel embarrassed of a medical device that is part of the reason that you're even able to go out in public and enjoy your life. And don't ever feel like an insulin pump makes you any less beautiful, because besides the beauty in your face, beauty is found in your general personality, strength, your courage and your ability to handle a life with type one diabetes with grace and your head held high.
-Ellie
Tuesday, 15 July 2014
Wednesday, 2 July 2014
Feeling disheartened
I haven't properly written a blog post since May. I wrote a quick one for my 5 year 'diaversary' but that's been it lately. I don't really know why I haven't blogged, I have been busy with exams and sixth form but things aren't so hectic with school any more; so I don't really have an excuse! I feel like I lost motivation for a little while, I just haven't felt the desire to write a blog like I used to. Everytime I've been on my laptop I open up blogger but I just don't post. Anyway, I've decided to put that behind me and get back to blogging properly again; my blog looks so empty.
I wish I could write this post and say that diabetes is going great; but it's not. I've been struggling more than ever with it lately, and to be quite honest I'm not sure why. I feel like it might have had something to do with being thrown off track due to exam stress and things like that, and I never picked myself back up again. In March my HbA1c was 9.7%, the first time I got it under 10% in literally about three years, maybe more. The last time I went to clinic was a couple of weeks ago and my HbA1c now stands at 14%, the highest it's ever been. It's safe to say I have been feeling so disheartened about it all lately, and I am really trying but it's just that nothing is a routine for me any more, so it's too easy for me to forget to do something or to not do it at all; and I'm struggling to get back into routine. Diabetes care does not come naturally to me any more.
When you're first diagnosed people always says "It will be second nature to you, like brushing your teeth, or breathing!" It started off like that, the first couple of years with diabetes were okay, and the last few years of it all I can think of is high HbA1c's, and I wish that I was a "good" diabetic and did everything I should- but it's almost like because I lived eleven years without being a diabetic, my brain finds a way to get it back to that. I know it can't be obviously, I know I can't run away from it and I have to face it- but saying that, it's not as if I'm in denial about it, I'm aware of the fact that diabetes isn't going well at the moment, and I am aware of the fact that my blood sugars are high a lot, but I just really am struggling to get back on top of it.
I know what high blood sugar can do to me, I know how much my body will suffer in the long-run if I don't get things back under control but I'm working on it. I really am. I want to get back into control, but I'm going to run into times when I struggle, I know that. But I get really frustrated when I feel like I just can't do it, and it's really easy to feel disheartened. I don't want to struggle with it, but the fact is that I do, and everyone deals with diabetes differently and I'm just one of those diabetics who runs into "diabetes burnout" more often than not. I know looking after diabetes can be done, and I know there are so many people who go above and beyond despite type one diabetes- but then I always wonder how they do it, I wonder how they always find the drive to test and inject and things...I must sound so silly saying it but it's true, I wonder why I don't have the intense drive and they do. I want it.
I don't feel "depressed" about it, just a little down. And I'm struggling to be positive about it at the moment, until I know that I'm doing better I just feel so discouraged. I keep thinking about being co-chair of Type 1 Parliament and speaking in Parliament for Diabetes UK, and attending the JDRF Gala, and my blog and how positive about it I can be; but then I think- how can I be trying to help people when it appears I can't even help myself? I keep feeling like I've never been the right person for any of that stuff. Then I remember everyone has their ups and downs and that what I feel right now about diabetes is just a phase. I love advocating for it and sometimes I feel like my passion to raise awareness and advocate is enhanced by the fact that for me, it isn't a breeze and I've definitely experienced the ups and downs with diabetes. I can see it from both sides most definitely. And I have really realised lately that a life with type one diabetes is truly bitter sweet.
When I was diagnosed I don't think I thought as far ahead as 5 years, I was just taking diabetes one year at a time, well; a day at a time but you know what I mean. I don't think I really had any expectations or goals of where I wanted to be in 5 years in terms of diabetes- and now that I'm here I wish I did set myself some goals, it might have helped me keep up motivation and keep up a routine. I have the desire to get back into control but just can't seem to get there. I sound like such a broken record; and what I'm saying may not make much sense because I'm finding it difficult to express what position I'm in right now. It's definitely 'diabetes burnout' but I just don't know how to explain it.
Both me and my mum got upset over my HbA1c, my mum probably more than me. But I know it's because she worries and I know that you're probably reading this mum, so if you are and although I probably told you this the other week, I just need you to know I'm trying and I will get there. Find reassurance in the fact that I haven't given up and I won't give up- because I know that wouldn't get me very far. And I would do anything for you and I'm working super hard on getting back on track- for both of us, because I don't want you to worry about me, and trust me I don't want any damage to happen to me either. <3
I salute my parents for putting up with all my struggles with diabetes, I know it's super hard for them to know that I'm not doing great with my diabetes care at the moment. And I know they feel helpless but right now the best thing to do is just be there for me, because it's not that I don't want their help- it's just I feel that at the moment nothing is really working for me and I will get back into control because I've done it before and I've done it again. And in all honesty what I really need right now (and always will! ha ha) is my parents love and support because without them I have no idea what I would do- and in doing just that they are helping me in more ways than they know...!
I'm struggling to see the light at the end of the tunnel right now, I've been through rough patches with my diabetes before, but it just seems like an even worse one right now- enhanced by my HbA1c being high too. My consultant suggested going to see the psychologist to see if they can help me, but I am sort of against the idea because I just don't think it would do me much good because they are there to help you find more motivation, except I have the desire to do it and get better at my diabetes care but I just can't seem to find the routine...I mean I am feeling a bit discouraged but I feel like that's something I can get over on my own...and I don't want to go to an appointment and find that I just don't open up at all because that would be a total waste of time. I don't know, I have a couple more weeks to make up my mind, I might warm to the idea, at least I can say that I've tried then.
That's where I'm at for now. I know I'll get there and I know I can do it, I have faith in myself that I can do this. And I know that I'm strong enough to do this, but at the moment I don't feel so strong.
I wish I could write this post and say that diabetes is going great; but it's not. I've been struggling more than ever with it lately, and to be quite honest I'm not sure why. I feel like it might have had something to do with being thrown off track due to exam stress and things like that, and I never picked myself back up again. In March my HbA1c was 9.7%, the first time I got it under 10% in literally about three years, maybe more. The last time I went to clinic was a couple of weeks ago and my HbA1c now stands at 14%, the highest it's ever been. It's safe to say I have been feeling so disheartened about it all lately, and I am really trying but it's just that nothing is a routine for me any more, so it's too easy for me to forget to do something or to not do it at all; and I'm struggling to get back into routine. Diabetes care does not come naturally to me any more.
When you're first diagnosed people always says "It will be second nature to you, like brushing your teeth, or breathing!" It started off like that, the first couple of years with diabetes were okay, and the last few years of it all I can think of is high HbA1c's, and I wish that I was a "good" diabetic and did everything I should- but it's almost like because I lived eleven years without being a diabetic, my brain finds a way to get it back to that. I know it can't be obviously, I know I can't run away from it and I have to face it- but saying that, it's not as if I'm in denial about it, I'm aware of the fact that diabetes isn't going well at the moment, and I am aware of the fact that my blood sugars are high a lot, but I just really am struggling to get back on top of it.
I know what high blood sugar can do to me, I know how much my body will suffer in the long-run if I don't get things back under control but I'm working on it. I really am. I want to get back into control, but I'm going to run into times when I struggle, I know that. But I get really frustrated when I feel like I just can't do it, and it's really easy to feel disheartened. I don't want to struggle with it, but the fact is that I do, and everyone deals with diabetes differently and I'm just one of those diabetics who runs into "diabetes burnout" more often than not. I know looking after diabetes can be done, and I know there are so many people who go above and beyond despite type one diabetes- but then I always wonder how they do it, I wonder how they always find the drive to test and inject and things...I must sound so silly saying it but it's true, I wonder why I don't have the intense drive and they do. I want it.
I don't feel "depressed" about it, just a little down. And I'm struggling to be positive about it at the moment, until I know that I'm doing better I just feel so discouraged. I keep thinking about being co-chair of Type 1 Parliament and speaking in Parliament for Diabetes UK, and attending the JDRF Gala, and my blog and how positive about it I can be; but then I think- how can I be trying to help people when it appears I can't even help myself? I keep feeling like I've never been the right person for any of that stuff. Then I remember everyone has their ups and downs and that what I feel right now about diabetes is just a phase. I love advocating for it and sometimes I feel like my passion to raise awareness and advocate is enhanced by the fact that for me, it isn't a breeze and I've definitely experienced the ups and downs with diabetes. I can see it from both sides most definitely. And I have really realised lately that a life with type one diabetes is truly bitter sweet.
When I was diagnosed I don't think I thought as far ahead as 5 years, I was just taking diabetes one year at a time, well; a day at a time but you know what I mean. I don't think I really had any expectations or goals of where I wanted to be in 5 years in terms of diabetes- and now that I'm here I wish I did set myself some goals, it might have helped me keep up motivation and keep up a routine. I have the desire to get back into control but just can't seem to get there. I sound like such a broken record; and what I'm saying may not make much sense because I'm finding it difficult to express what position I'm in right now. It's definitely 'diabetes burnout' but I just don't know how to explain it.
Both me and my mum got upset over my HbA1c, my mum probably more than me. But I know it's because she worries and I know that you're probably reading this mum, so if you are and although I probably told you this the other week, I just need you to know I'm trying and I will get there. Find reassurance in the fact that I haven't given up and I won't give up- because I know that wouldn't get me very far. And I would do anything for you and I'm working super hard on getting back on track- for both of us, because I don't want you to worry about me, and trust me I don't want any damage to happen to me either. <3
I salute my parents for putting up with all my struggles with diabetes, I know it's super hard for them to know that I'm not doing great with my diabetes care at the moment. And I know they feel helpless but right now the best thing to do is just be there for me, because it's not that I don't want their help- it's just I feel that at the moment nothing is really working for me and I will get back into control because I've done it before and I've done it again. And in all honesty what I really need right now (and always will! ha ha) is my parents love and support because without them I have no idea what I would do- and in doing just that they are helping me in more ways than they know...!
I'm struggling to see the light at the end of the tunnel right now, I've been through rough patches with my diabetes before, but it just seems like an even worse one right now- enhanced by my HbA1c being high too. My consultant suggested going to see the psychologist to see if they can help me, but I am sort of against the idea because I just don't think it would do me much good because they are there to help you find more motivation, except I have the desire to do it and get better at my diabetes care but I just can't seem to find the routine...I mean I am feeling a bit discouraged but I feel like that's something I can get over on my own...and I don't want to go to an appointment and find that I just don't open up at all because that would be a total waste of time. I don't know, I have a couple more weeks to make up my mind, I might warm to the idea, at least I can say that I've tried then.
That's where I'm at for now. I know I'll get there and I know I can do it, I have faith in myself that I can do this. And I know that I'm strong enough to do this, but at the moment I don't feel so strong.
Monday, 23 June 2014
5 years
June 21st 2014 was the very day 5 years ago that I was diagnosed with type one diabetes.
I didn't get it from eating too much sugar, nor did I get it from having a bad diet. Type one diabetes is an autoimmune disease in which the immune system attacks the insulin producing cells in the pancreas- my body no longer produces insulin. Insulin turns the sugar from the food we eat into energy for the cells and if there is no insulin the sugar just builds up in the blood; which is very dangerous.
I have to replace the insulin my body does not produce by having multiple daily insulin injections or using an insulin pump that delivers insulin via a cannula under my skin...without insulin I would die. On top of giving myself insulin I need to test my blood sugar 4+ times a day to make sure it's in a safe range. My blood sugar fluctuates constantly every single day; from high to low. High blood sugar makes me feel thirsty and tired and has been the reason for me being in hospital four times in five years in diabetic ketoacidosis- a life threatening condition which can result in a coma if left untreated. Low blood sugar makes me feel weak and shaky and very hungry; this too can result in passing out or a coma if left untreated.
Even though diabetes has put me through a hell of a lot in these past five years I have actually found something positive in a life with type one diabetes too. In between all the rubbish I've tried to raise awareness as best I can, I've spoken in Parliament for both Diabetes UK and JDRF, I've spoken at a JDRF gala and I've got a blog about life with type one diabetes which has conjured up over 27,000 views in just over a year.
I wish I didn't have type one diabetes at all, but I know that sitting around moaning about it isn't going to change the fact that I have it; so I channel my frustrations into something positive instead. However, I still definitely have my down days, I have days where I cry about it, and want to give up...and I know there are things worse than type one diabetes but it doesn't deny the fact that type one diabetes is still potentially life-threatening, and poses the risk of devastating complications for me, like blindness, kidney disease, limb amputation, heart disease, nerve damage, and more.
Although my life is in my hands 24/7 and I have to deal with everything that is type one diabetes; I love life and I am so grateful that I have such supportive parents, family and friends- and I especially do not know how I would get through all of this without my parents and I am forever grateful to them for all their love and support. I have had and will continue to endure thousands of injections and finger pricks, and hundreds of pump cannula changes, along with many sleepless nights, and tears and lots of hospital appointments, and more...plus I've been through five hospital admissions (including diagnosis), but I still smile.This disease has taught me responsibility and has made me stronger. I won't give up until there is a cure.
Bring on the rest of my life with type 1; because I know I'm strong enough to deal with it, even if sometimes I don't feel so strong.
I didn't get it from eating too much sugar, nor did I get it from having a bad diet. Type one diabetes is an autoimmune disease in which the immune system attacks the insulin producing cells in the pancreas- my body no longer produces insulin. Insulin turns the sugar from the food we eat into energy for the cells and if there is no insulin the sugar just builds up in the blood; which is very dangerous.
I have to replace the insulin my body does not produce by having multiple daily insulin injections or using an insulin pump that delivers insulin via a cannula under my skin...without insulin I would die. On top of giving myself insulin I need to test my blood sugar 4+ times a day to make sure it's in a safe range. My blood sugar fluctuates constantly every single day; from high to low. High blood sugar makes me feel thirsty and tired and has been the reason for me being in hospital four times in five years in diabetic ketoacidosis- a life threatening condition which can result in a coma if left untreated. Low blood sugar makes me feel weak and shaky and very hungry; this too can result in passing out or a coma if left untreated.
Even though diabetes has put me through a hell of a lot in these past five years I have actually found something positive in a life with type one diabetes too. In between all the rubbish I've tried to raise awareness as best I can, I've spoken in Parliament for both Diabetes UK and JDRF, I've spoken at a JDRF gala and I've got a blog about life with type one diabetes which has conjured up over 27,000 views in just over a year.
I wish I didn't have type one diabetes at all, but I know that sitting around moaning about it isn't going to change the fact that I have it; so I channel my frustrations into something positive instead. However, I still definitely have my down days, I have days where I cry about it, and want to give up...and I know there are things worse than type one diabetes but it doesn't deny the fact that type one diabetes is still potentially life-threatening, and poses the risk of devastating complications for me, like blindness, kidney disease, limb amputation, heart disease, nerve damage, and more.
Although my life is in my hands 24/7 and I have to deal with everything that is type one diabetes; I love life and I am so grateful that I have such supportive parents, family and friends- and I especially do not know how I would get through all of this without my parents and I am forever grateful to them for all their love and support. I have had and will continue to endure thousands of injections and finger pricks, and hundreds of pump cannula changes, along with many sleepless nights, and tears and lots of hospital appointments, and more...plus I've been through five hospital admissions (including diagnosis), but I still smile.This disease has taught me responsibility and has made me stronger. I won't give up until there is a cure.
Bring on the rest of my life with type 1; because I know I'm strong enough to deal with it, even if sometimes I don't feel so strong.
Saturday, 17 May 2014
Life with type one diabetes in pictures
These are just some photos which basically just sum up most of the "major" events that have happened in my life with type one diabetes in the past couple of years. I started to really get into doing stuff about it (like walks and awareness raising etc.) within a few of years after diagnosis; the first couple of years of being diagnosed was pretty much just about learning and getting my head round things! Hence why there is a big jump from 2009 to 2011.
I'll start with the day I was diagnosed: June 21st 2009
We ran the Race For Life that day; and that evening I was in the hospital having been diagnosed as type 1 diabetic.
June 14th 2011: The day I got my insulin pump; Maurice.
. Around August 2012 or 2011: Around when I first joined twitter I think and then not long after that I discovered the Great Britain Online Diabetes Community and just the rest of the #doc in general!
February 2013: 2nd time being in DKA. I think it was around Feb. I've forgotten the exact dates! ha ha. (I have no photos from the first time I don't think! Which was in June 2012 I think, if I remember rightly) Both of the first two times in DKA were due to pump cannula issues.
March 2013: When I started this blog!
March 2013: Coming across Paris on Instagram. Over a year later and she is easily my diabetic best friend! I am so thankful to have met her, I love her so much and she totally gets what I'm going through because she goes through it too. I am just so grateful that I know her.
June 2013: Going to Parliament with Diabetes UK and doing a speech for their campaign 'Type 1 Essentials'.
September 2013: Doing the JDRF Walk To Cure Diabetes in London with my mum and auntie!
October 2013: The 3rd time being in DKA. Not fun! Being unwell with type one diabetes doesn't really mix.
January 2014: Taking a pump break.
February 2014: 'Kidney scare' first visit to Great Ormond Street Children's hospital to have my kidney function double checked after annual review showed protein. My kidneys are ok by the way.
March 2014: Type 1 Parliament with JDRF! Being co-chair and doing a speech, plus meeting some amazing people. Like Grumpy pumper a.k.a Chris, Laura, Lydia and Nathaniel.
Early March 2014: Getting my Hba1c down to 9.7% from it being 12.5% just 6 weeks prior to that. And I also got it under 10 for the first time in literally a couple of years.
March 2014: Being in DKA for the fourth time. This time due to sore throat and wisdom teeth infection. Like I said being unwell with type one diabetes doesn't mix very well!
April 2014: Becoming a peer trainer for the Tree of Life Project which is basically just a diabetes support group which runs every year at the hospital.
May 2014: Second time going to Great Ormond Street Hospital to check my kidney function, all seems to still be okay!
May 2014: Just a little glimpse into the life of a type one diabetic teenager, it's a struggle when your insulin pump tubing gets tangled in your headphones.
So that's it so far really. I just want to thank everyone like my mum, my dad, my family and my friends (both non-diabetic and diabetic!) for helping me through all of this, for all your support and for helping to make life with type one diabetes so much easier for me, because it's hard it will never truly be "easy" but the amazing people that I have in my life help to make it as "easy" as it could possibly get I suppose. I don't know how I would have coped with, or achieved a lot of the stuff in this blog post if it wasn't for you all, especially my parents- and I will never be able to put into words just how much I love my mum and dad and just how grateful I am to them for everything that they do for me, I couldn't be more grateful for them. Strangely, I am grateful to this disease, but just simply for the good things that have come about in my life due to type one diabetes, like meeting my diabetic best friend Paris, and going to Parliament twice with both JDRF and Diabetes UK, and meeting all of the amazing people that I did. Even the episodes of DKA as much as they sucked and were such an awful experience; I have come back stronger with all four and I will never stop fighting against type one diabetes.
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
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
Saturday, 10 May 2014
Rant
It's another night that I lie here waiting for my blood sugar to come down from being high, I can't sleep with high blood sugar...too thirsty. I caught an 18.3; corrected and laid back down. I looked across at my sister and she's sleeping...I'm not. I reckon if I worked out how much sleep I get compared to her it would work out to about minus one million. My eyes are open but I can't see anything, just the silhouettes of the objects in my room and the dim screen of my blood sugar meter, as the high blood sugar reading slowly fades away until the screen turns to black. I just rolled up the blinds to let the moon in, it's almost as though the light makes me feel less alone, it breaks up the darkness. These are the nights I take the opportunity to reflect, mainly on type one diabetes and the struggles it has presented me with over the past five years; I like to be positive but sometimes I just need to let things out, I need the chance to let my deepest feelings out about this disease. Negative thoughts just clog up the system, so why not let them out?
I have fired a needle into my finger over 9,000 times. 9,000+ times blood has been drawn from my finger tips, and over 9,000 times a reading has come up on the screen of my blood sugar meter. Sometimes it is fine and other times it is not. One moment my blood sugar could be perfect and the next moment I could have very high blood sugar. It is a constant balancing act that you are not guaranteed to succeed in. There are no guarantees in a life with this disease and it is hard. I can tell you that for a fact. I am sixteen years old and my body no longer has the ability to keep me alive due to the failure of the insulin producing beta cells in my pancreas after my immune system turned on them...I am now doing that for myself with the help and support of my parents, family and friends. The fact that I take my insulin and prick my finger and take glucose tablets when I have to is the reason that I am still here after almost five years and that is my reality. I shouldn't need to do all of this, I shouldn't have to wear an insulin pump, I shouldn't know the carbohydrate content of many food items off by heart, I shouldn't need to endure high blood sugars because my body can no longer stop that from happening, I shouldn't need to do my best to avoid a low blood sugar because I am taking a medicine that is my lifeline but too much of it could kill me.
I have been in diabetic ketoacidosis four times in five years. That is four times in my life that I have been very close to falling into a coma, that is four times in my life that my blood has turned acidic, four times that my parents have had to drive me to A&E, four times that I have sat in the bathroom sobbing because the acidic state that was raging on in my blood made me feel that awful. And there isn't really any way to "sugar-coat" a situation like that because DKA is what it is. It is a moment when you realise just how much your body relies on the insulin that sits in the fridge, because anything that results in a few hours without it could kill you. Because I am insulin-dependant, every single breath that I breathe, every morning that I open my eyes depends on it and nothing but a cure can change that.
I count it as a blessing that I have not experienced a severe hypo (low blood sugar) which has resulted in loss of consciousness before. However I have had a low blood sugar in which in that moment, I was close to it. It rendered me unable to even test my blood sugar on my own, my hands were trembling so much and my vision was getting so impaired that I gave up trying and just lay there calling for my parents. They had to feed me pure sugar, something that most parents are totally against, but if it meant their child's consciousness depended on it, then I'm sure that a few minutes extra brushing that night would be a thought far from their minds. My blood sugar rose quickly and I was ok again and thankfully dinner was almost ready. But just like that I went from doing my homework, to lying on the sofa close to passing out. Like I said, it's a balancing act that you're never guaranteed to get right. Tonight I have caught a high blood sugar, but some nights I have caught a low blood sugar. Now "I won't go there", because we all know the fear that lies in the back of our minds in regards to night time low blood sugar; but let me just say, that living with type one diabetes means that sometimes just closing your eyes and falling asleep at night can be one of the scariest things in the world.
Being a type one diabetic is something that I never expected would come about in my life. For eleven, almost twelve years I lived a life that didn't know type one diabetes, but is a distant memory to me now and my life is very different from what it used to be. However looking back on the past five years has made me remember that despite type one diabetes I still have a life. Yes, it has taken up a huge proportion of my life but it is not all my life. I always say this, but it is true and I have to remember that being a type one diabetic is not all that I am; although it has helped to shape me more as a person. However that "shaping" has come from struggle and I do not like that; but I have realised that in order to let type one diabetes have that positive affect on you as a person while it tries to make all the negative ones, you need to have the right attitude to the disease. But it's hard to find it. And I can tell you that this attitude that I have developed towards it did not occur overnight, I didn't just wake up the next morning after being diagnosed and try embrace what I had just been diagnosed with,it took me time and even now I struggle to find positivity in what diabetes puts me through. I mean after all, it's not easy to embrace a life-long chronic disease that could be potentially life-threatening and poses about a gazillion health risks...
I have spent many nights staring at the ceiling just wanting to cry, some days I want to cry and scream and shake my fist, I want to question type one diabetes, I want to question why I was given this disease. Because some days it just feels so unfair. Yes, it could be worse, and in comparison to what other people have to go through I know that I haven't been dealt the worst cards in the world thank goodness, but type one diabetes is what it is. It can still threaten my life, it still requires a life of needles and finger pricking, it still evokes many different emotions, it still causes worry and fear and stress, not just for me but for those that I love too. It still makes me fear even going to sleep at night Some days I just have no words for it all. I try to stay positive about it and be strong but some days it just kicks my butt and there is no denying it. And sometimes no matter just how hard that I try to be strong and I try to be positive, those feelings seem to be a world away at times. But miraculously in some of the moments that I have just felt so beaten down by type one diabetes I have still managed to smile.
At times I don't want the responsibility, I do not want the responsibility for my own life, but I know that I have to. I have to do it because if I don't then I would't get very far! It just seems wrong. It seems wrong that my body can't keep me alive by itself any more. It's just crazy to think about it. But to take responsibility means to accept it, and that is what I did the very first day I was diagnosed and I still do. I accepted it. I have accepted the life that I had just been so abruptly thrown into. Despite all of the struggles it has put me through and despite all of the negative emotions diabetes has evoked and despite all of the needles and the hospital admissions and the hospital appointments; I am living my life to the fullest despite type one diabetes, but it's just that sometimes you just need to have a good little rant. Tonight I just felt like I needed a moment to rant about this relentless disease that I live with 24/7. Because after all, I am awake at 1:30am dealing with a high blood sugar that I shouldn't even have to be dealing with, but like I said, I do it because I have to.
I can't just "take a break" from my ever-changing blood sugars, I can't get into bed at night without making sure that my blood sugar is okay, I can't leave the house without my diabetic supplies, I can't just start eating my food when it comes to breakfast lunch and dinner...that requires a lot of maths; working out carbohydrates, insulin dosages, correction doses etc. I can't fall asleep without glucose tablets by my bedside, I can't go on holiday without packing a bag full of supplies, I can't even go for a walk without packing a bag full of supplies.
But what I CAN do is learn not to focus on what I can't do.
Because actually, there is one big CAN and that is that I can take what diabetes has put me through and use it to raise awareness and use it to help make me a better and a stronger person. I can take something positive away from the challenge that is type one diabetes. But there is also one more can't, and this is one which I probably should focus on. I cannot let type one diabetes break my spirits. I cannot let it win. There are many times when I have let it, I have felt so discouraged that I have let the negative aspect of this disease come over me but I just can't let it do that, because to let it win would mean that I gave up, and that's not an option.
Ah, a life with type one diabetes is just so crazy but it's alright because I've got this, and with the love and support of my parents and family and friends then I know I can fights diabetes.
-Ellie
I have fired a needle into my finger over 9,000 times. 9,000+ times blood has been drawn from my finger tips, and over 9,000 times a reading has come up on the screen of my blood sugar meter. Sometimes it is fine and other times it is not. One moment my blood sugar could be perfect and the next moment I could have very high blood sugar. It is a constant balancing act that you are not guaranteed to succeed in. There are no guarantees in a life with this disease and it is hard. I can tell you that for a fact. I am sixteen years old and my body no longer has the ability to keep me alive due to the failure of the insulin producing beta cells in my pancreas after my immune system turned on them...I am now doing that for myself with the help and support of my parents, family and friends. The fact that I take my insulin and prick my finger and take glucose tablets when I have to is the reason that I am still here after almost five years and that is my reality. I shouldn't need to do all of this, I shouldn't have to wear an insulin pump, I shouldn't know the carbohydrate content of many food items off by heart, I shouldn't need to endure high blood sugars because my body can no longer stop that from happening, I shouldn't need to do my best to avoid a low blood sugar because I am taking a medicine that is my lifeline but too much of it could kill me.
I have been in diabetic ketoacidosis four times in five years. That is four times in my life that I have been very close to falling into a coma, that is four times in my life that my blood has turned acidic, four times that my parents have had to drive me to A&E, four times that I have sat in the bathroom sobbing because the acidic state that was raging on in my blood made me feel that awful. And there isn't really any way to "sugar-coat" a situation like that because DKA is what it is. It is a moment when you realise just how much your body relies on the insulin that sits in the fridge, because anything that results in a few hours without it could kill you. Because I am insulin-dependant, every single breath that I breathe, every morning that I open my eyes depends on it and nothing but a cure can change that.
I count it as a blessing that I have not experienced a severe hypo (low blood sugar) which has resulted in loss of consciousness before. However I have had a low blood sugar in which in that moment, I was close to it. It rendered me unable to even test my blood sugar on my own, my hands were trembling so much and my vision was getting so impaired that I gave up trying and just lay there calling for my parents. They had to feed me pure sugar, something that most parents are totally against, but if it meant their child's consciousness depended on it, then I'm sure that a few minutes extra brushing that night would be a thought far from their minds. My blood sugar rose quickly and I was ok again and thankfully dinner was almost ready. But just like that I went from doing my homework, to lying on the sofa close to passing out. Like I said, it's a balancing act that you're never guaranteed to get right. Tonight I have caught a high blood sugar, but some nights I have caught a low blood sugar. Now "I won't go there", because we all know the fear that lies in the back of our minds in regards to night time low blood sugar; but let me just say, that living with type one diabetes means that sometimes just closing your eyes and falling asleep at night can be one of the scariest things in the world.
Being a type one diabetic is something that I never expected would come about in my life. For eleven, almost twelve years I lived a life that didn't know type one diabetes, but is a distant memory to me now and my life is very different from what it used to be. However looking back on the past five years has made me remember that despite type one diabetes I still have a life. Yes, it has taken up a huge proportion of my life but it is not all my life. I always say this, but it is true and I have to remember that being a type one diabetic is not all that I am; although it has helped to shape me more as a person. However that "shaping" has come from struggle and I do not like that; but I have realised that in order to let type one diabetes have that positive affect on you as a person while it tries to make all the negative ones, you need to have the right attitude to the disease. But it's hard to find it. And I can tell you that this attitude that I have developed towards it did not occur overnight, I didn't just wake up the next morning after being diagnosed and try embrace what I had just been diagnosed with,it took me time and even now I struggle to find positivity in what diabetes puts me through. I mean after all, it's not easy to embrace a life-long chronic disease that could be potentially life-threatening and poses about a gazillion health risks...
I have spent many nights staring at the ceiling just wanting to cry, some days I want to cry and scream and shake my fist, I want to question type one diabetes, I want to question why I was given this disease. Because some days it just feels so unfair. Yes, it could be worse, and in comparison to what other people have to go through I know that I haven't been dealt the worst cards in the world thank goodness, but type one diabetes is what it is. It can still threaten my life, it still requires a life of needles and finger pricking, it still evokes many different emotions, it still causes worry and fear and stress, not just for me but for those that I love too. It still makes me fear even going to sleep at night Some days I just have no words for it all. I try to stay positive about it and be strong but some days it just kicks my butt and there is no denying it. And sometimes no matter just how hard that I try to be strong and I try to be positive, those feelings seem to be a world away at times. But miraculously in some of the moments that I have just felt so beaten down by type one diabetes I have still managed to smile.
At times I don't want the responsibility, I do not want the responsibility for my own life, but I know that I have to. I have to do it because if I don't then I would't get very far! It just seems wrong. It seems wrong that my body can't keep me alive by itself any more. It's just crazy to think about it. But to take responsibility means to accept it, and that is what I did the very first day I was diagnosed and I still do. I accepted it. I have accepted the life that I had just been so abruptly thrown into. Despite all of the struggles it has put me through and despite all of the negative emotions diabetes has evoked and despite all of the needles and the hospital admissions and the hospital appointments; I am living my life to the fullest despite type one diabetes, but it's just that sometimes you just need to have a good little rant. Tonight I just felt like I needed a moment to rant about this relentless disease that I live with 24/7. Because after all, I am awake at 1:30am dealing with a high blood sugar that I shouldn't even have to be dealing with, but like I said, I do it because I have to.
I can't just "take a break" from my ever-changing blood sugars, I can't get into bed at night without making sure that my blood sugar is okay, I can't leave the house without my diabetic supplies, I can't just start eating my food when it comes to breakfast lunch and dinner...that requires a lot of maths; working out carbohydrates, insulin dosages, correction doses etc. I can't fall asleep without glucose tablets by my bedside, I can't go on holiday without packing a bag full of supplies, I can't even go for a walk without packing a bag full of supplies.
But what I CAN do is learn not to focus on what I can't do.
Because actually, there is one big CAN and that is that I can take what diabetes has put me through and use it to raise awareness and use it to help make me a better and a stronger person. I can take something positive away from the challenge that is type one diabetes. But there is also one more can't, and this is one which I probably should focus on. I cannot let type one diabetes break my spirits. I cannot let it win. There are many times when I have let it, I have felt so discouraged that I have let the negative aspect of this disease come over me but I just can't let it do that, because to let it win would mean that I gave up, and that's not an option.
Ah, a life with type one diabetes is just so crazy but it's alright because I've got this, and with the love and support of my parents and family and friends then I know I can fights diabetes.
-Ellie
Monday, 5 May 2014
My very first low blood sugar
I had what I now know to be my very first blood sugar a few months before I was actually diagnosed with type one diabetes.
I don't remember the exact month but it was at some point early in the year in 2009. We were driving down to Clacton to see relatives on my dad's side of the family, and the journey is about one and a half hours. I started to feel what I thought as "really weird" towards the end of the journey- I knew that something just wasn't right. However, I didn't think much of it because I had no reason to; I put it down to sitting in the car for so long that I felt so weak. When I got out of the car my legs felt like jelly and I could honestly just about walk so when we got inside I sat down the whole time hoping whatever I was feeling would just go away.
All I can say is thank goodness it was lunch time, because if I hadn't eaten something quickly that day then I most probably would have passed out. I felt so hungry and ate very fast, immediately I began to feel better again and the feeling went away. My body knew my blood sugar was low; however I didn't- and this incredible urge to eat was so strong, my body was screaming "feed me or you'll pass out!" Yet I was unaware; I was unaware of the diagnosis that was to come a few months later, I was unaware of the battle that was raging on inside my body.
I find it mad how my body even developed a low blood sugar with what was to come- the eventual failure of the insulin-producing beta-cells in my pancreas. I wonder if at this point the auto-immune attack had begun, or if it hadn't started at all? I really don't know, but what I do know is that I had not been diagnosed as a type 1 diabetic at the time, nor had the words "type 1 diabetes" even been spoken to me before. This occurred at a time that I think, my body appeared to be "fine", I can't remember if I even had any symptoms of type 1 by this point either. What I now know to be my first low blood sugar was an unnerving experience for me; I had no idea what was going on with my body and I just tried my best to carry on as normal despite the symptoms that I was experiencing that day and despite being quite concerned I didn't think much of it after the event had passed. I went back to being normal, however it didn't last long.
Shortly after that day the symptoms of type 1 diabetes would become even more prevalent, the auto-immune response would be in full attack against my pancreas and there would be nothing I could do to stop it, yet I had no idea. The symptoms of a low blood sugar would not come back until the day after I was diagnosed; sitting in my hospital bed the nurse tested my blood sugars and they came back at a perfect 5.5 mmol.
Although it was nearly five years ago I still remember this moment very clearly; I suppose because it was the moment that it truly hit me...I realised the effectiveness of the insulin, and I realised just how much my blood sugars had come down, I was experiencing something other than thirst and lethargy for the first time in a long time.
I was sitting at the end of the bed; I felt very shaky and weak but I did my best to ignore it and carry on with whatever I was doing; I didn't want to mention it because once again, I thought nothing of it. However, my mind was racing with thoughts, an 11 year old me sat at the end of her bed wondering what on earth was going on with her body. The nurse looked at me and I suppose I just couldn't hide the look of concern on my face and she said to me "Hold out your hands?" and so I put them out in front of me, barely managing to keep them up. And my hands were shaking, they were trembling.
The nurse explained to me this was normal and what I was experiencing were actually the symptoms of a low blood sugar, I know I wasn't low at 5.5 but this was low for my body at this time. My blood sugar was 45 at diagnosis the day before and so a 5.5 was probably a bit of a shock to the system; having been accustomed to high blood sugars for so long. It's bizarre but it's just what happens, because 5 mmol of sugar in the blood isn't much to a body that was used to having 20+.
Even now I still experience this, if my blood sugars have been high for a little while, once my blood sugars get down to a normal range again I experience the symptoms of a low blood sugar, and/or the first low blood sugar that I have after being high for a long time is worse than it would be if my blood sugars had been in good control prior to it.
Obviously in five years I have experienced many many low blood sugars; and although they were scary and unfamiliar to me at first- unfortunately they have become a part of my everyday life now. I know what it feels like to experience a low blood sugar as a non-diabetic and so to think that I have almost become "used" to the feeling is very strange to think about. That first time that I experienced low blood sugar whilst in Clacton is a time that I will never forget, just because of how unnerving that it was; and if anyone asked me back then if I could ever get used to that, or if I could handle experiencing those symptoms again I would have said no. I had no clue that I would experience what I now know to be low blood sugar even just once again, let alone as many times as I have done and will continue to, until there is a cure for type one diabetes and my life will no longer depend on insulin.
-Ellie
I don't remember the exact month but it was at some point early in the year in 2009. We were driving down to Clacton to see relatives on my dad's side of the family, and the journey is about one and a half hours. I started to feel what I thought as "really weird" towards the end of the journey- I knew that something just wasn't right. However, I didn't think much of it because I had no reason to; I put it down to sitting in the car for so long that I felt so weak. When I got out of the car my legs felt like jelly and I could honestly just about walk so when we got inside I sat down the whole time hoping whatever I was feeling would just go away.
All I can say is thank goodness it was lunch time, because if I hadn't eaten something quickly that day then I most probably would have passed out. I felt so hungry and ate very fast, immediately I began to feel better again and the feeling went away. My body knew my blood sugar was low; however I didn't- and this incredible urge to eat was so strong, my body was screaming "feed me or you'll pass out!" Yet I was unaware; I was unaware of the diagnosis that was to come a few months later, I was unaware of the battle that was raging on inside my body.
I find it mad how my body even developed a low blood sugar with what was to come- the eventual failure of the insulin-producing beta-cells in my pancreas. I wonder if at this point the auto-immune attack had begun, or if it hadn't started at all? I really don't know, but what I do know is that I had not been diagnosed as a type 1 diabetic at the time, nor had the words "type 1 diabetes" even been spoken to me before. This occurred at a time that I think, my body appeared to be "fine", I can't remember if I even had any symptoms of type 1 by this point either. What I now know to be my first low blood sugar was an unnerving experience for me; I had no idea what was going on with my body and I just tried my best to carry on as normal despite the symptoms that I was experiencing that day and despite being quite concerned I didn't think much of it after the event had passed. I went back to being normal, however it didn't last long.
Shortly after that day the symptoms of type 1 diabetes would become even more prevalent, the auto-immune response would be in full attack against my pancreas and there would be nothing I could do to stop it, yet I had no idea. The symptoms of a low blood sugar would not come back until the day after I was diagnosed; sitting in my hospital bed the nurse tested my blood sugars and they came back at a perfect 5.5 mmol.
Although it was nearly five years ago I still remember this moment very clearly; I suppose because it was the moment that it truly hit me...I realised the effectiveness of the insulin, and I realised just how much my blood sugars had come down, I was experiencing something other than thirst and lethargy for the first time in a long time.
I was sitting at the end of the bed; I felt very shaky and weak but I did my best to ignore it and carry on with whatever I was doing; I didn't want to mention it because once again, I thought nothing of it. However, my mind was racing with thoughts, an 11 year old me sat at the end of her bed wondering what on earth was going on with her body. The nurse looked at me and I suppose I just couldn't hide the look of concern on my face and she said to me "Hold out your hands?" and so I put them out in front of me, barely managing to keep them up. And my hands were shaking, they were trembling.
The nurse explained to me this was normal and what I was experiencing were actually the symptoms of a low blood sugar, I know I wasn't low at 5.5 but this was low for my body at this time. My blood sugar was 45 at diagnosis the day before and so a 5.5 was probably a bit of a shock to the system; having been accustomed to high blood sugars for so long. It's bizarre but it's just what happens, because 5 mmol of sugar in the blood isn't much to a body that was used to having 20+.
Even now I still experience this, if my blood sugars have been high for a little while, once my blood sugars get down to a normal range again I experience the symptoms of a low blood sugar, and/or the first low blood sugar that I have after being high for a long time is worse than it would be if my blood sugars had been in good control prior to it.
Obviously in five years I have experienced many many low blood sugars; and although they were scary and unfamiliar to me at first- unfortunately they have become a part of my everyday life now. I know what it feels like to experience a low blood sugar as a non-diabetic and so to think that I have almost become "used" to the feeling is very strange to think about. That first time that I experienced low blood sugar whilst in Clacton is a time that I will never forget, just because of how unnerving that it was; and if anyone asked me back then if I could ever get used to that, or if I could handle experiencing those symptoms again I would have said no. I had no clue that I would experience what I now know to be low blood sugar even just once again, let alone as many times as I have done and will continue to, until there is a cure for type one diabetes and my life will no longer depend on insulin.
-Ellie
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