Sunday, 24 January 2016

Pumps

I feel like I have a little bit of a rant coming on. I want to tell you all about my experience with an insulin pump. I have had an insulin pump for a little bit over 4 years and I can tell you it has been a love-hate relationship. But I realise that I'm fortunate to have this special bit of technology attached to my hip 24/7 because a lot of people don't get the chance. Diabetes is a disease that is very much up to the patient to control, I say we're in control, but sometimes we're not...a lot of the time it's not up to us what methods we use to control our diabetes. Insulin pumps are an example of that! I have an insulin pump, but someone else can't have one because of the NHS or whether or not their hospital covers pumps or whether or not their consultant will let them.

When I asked for an insulin pump over 4 years ago I was sick and tired of injecting over five times a day. I was running out of places to inject, I was tired of my thighs stinging from levemir and I was getting lumps under my skin. On the day I was diagnosed I was told- "Don't inject in the same place just because it hurts less...the insulin will collect under your skin and it won't absorb"- However I started to do just that- injecting into the fatty deposits was far more favourable than scouring all over my injection sites to find somewhere that hadn't been punctured a million times before, hitting a nerve was almost always what happened too. To sum it up being on injections can become a painful and tiring way to control your diabetes, and I wasn't prepared to spend a minute longer stabbing myself multiple times a day. I was done. So I was put on the list, and I got my insulin pump.

I had an appointment at adult clinic earlier this month, and one of the questions as part of what seemed more of an interrogation than an appointment was "Why did you get an insulin pump?" and I looked up and said "Because I was tired of injecting over five times a day" and the consultant looked so baffled, as if I had just said the wrong thing, I didn't realise there was a correct answer to that question. He then informed me that people often only get pumps if they have a high HbA1c or if they really "need" one. And I laughed, and I didn't really have an answer even though looking back I wish I had said more than "oh". Because what is the definition of  "needing" an insulin pump? Was the definition of needing an insulin pump not a 14-year-old me, almost in tears at every meal time at the thought of having to do yet another insulin injection? Was it not 14-year-old me often not wanting to eat just to avoid an injection? Apparently not.

I know people who have had their insulin pumps taken away from them due to "non-compliance" one of my closest diabetes friends being a prime example of this. Except, she was "non-compliant" a few years ago, she got her pump taken away from her and these days, she does everything she can to keep her blood sugars under control but still, she hasn't got her insulin pump back. I strongly disagree in taking an insulin pump away because of a high HbA1c...(that also leads to the question, why do people only get pumps if they "need" them for a high HbA1c, if equally they get taken away for a high HbA1c and only given back on a good A1c? Hmm...) It's negative reinforcement. And from what I've heard from everyone's experiences it doesn't work. It has the opposite effect. What's the point in throwing the toys out of the pram and saying "Right, I'm going to take your pump away from you because you can't control your diabetes" What is the point? To punish them? To punish someone for not achieving the national targets of a disease that is at times such a mental battle as much as a physical one? Why not figure out why they're not using their insulin pump in the way it should be and go from there.

I have struggled immensely with my diabetes...I have had pump downloads where there have been no boluses going on and hardly any testing. Not once has it been said to me by my team "We're going to take your insulin pump away from you." All that has happened has been efforts to figure out why my diabetes isn't under control, and for that I am very grateful. In fact, I have been the one in charge of whether or not I stay on my insulin pump over the years. I know when I am beginning to slack with my diabetes control, and I know when I am not utilising my pump in the best way possible. So on more than once occasion I have said to my consultant that I'm going to come off of my insulin pump and go back onto insulin injections. I took my pump off, transferred everything over to insulin injections again and got my diabetes back into control. How it worked for me was that I knew with injections I couldn't skip an injection...I skipped boluses at times because I had the safety blanket of my background insulin to keep me from going into DKA. So, going back onto injections kept me giving insulin and eventually I got back into that routine that I started slipping out of with my insulin pump...I then put my pump back on, feeling refreshed and ready to conquer my blood sugars again. I did that on my own terms- forcing me to give my insulin pump up wouldn't have had that effect on me.

The question of to give people an insulin pump is always going to be debatable. My take on it is if you want an insulin pump, you're eventually going to need one. The mental side of it alone warrants that. If someone is having a rubbish time on injections, and is starting to slack then they're eventually going to need an insulin pump to curb the inevitable rise in HbA1c...why wait for a HbA1c in double figures to then turn around and say actually yes, you need an insulin pump. And I know probably some of the things I've said in this blog might be debatable but as a person who has had experience on both a pump and injections and having struggled with diabetes control, that is my take on it.

I could go on for a long time ranting about this, but that's what I have to say so far. Why are insulin pumps such a debatable thing? Why is something that could improve people's lives with type 1 diabetes immensely so questionable? I know they're expensive but they're often necessary and so helpful, and it's a shame that some people don't even get a look in.

-Ellie

Wednesday, 20 January 2016

More than diabetes

I started this blog in 2013. I was 15 years old and I had so much to write about, I would write the most pointless things at 1am, and talk about every single little detail that entailed my life with Type 1 Diabetes, as the years have gone on I've stopped blogging so much, and I have ended up being a sporadic blogger! I had determination to get my blog into something big and something that has recognition in the world of diabetes, and I'm proud of it because it has helped me raise awareness and it has gained recognition and that was good enough for me...and I feel like I got my blog to a point where I am comfortable to leave it weeks without blogging because there is always people there to receive my first posts after abandoning my blog for a while. That is because of the motivation I had in the beginning...I built it up to what it is now, and I'm happy with it. So, I won't keep apologising for being an occasional blogger, it's the place I come to at 1am when I have lots of thoughts whirring around my head, or when I have something to rant about, but I also have other thoughts that aren't related to diabetes. I have a life that is not consumed by diabetes and I am more than a person with Type 1 Diabetes and I think my blog really represents that fact!

I am 18 years old, I have finished school and I am, at times, a very indecisive person but there are moments when I will make a decision and stick to it, and there are times when I know what I want and I'll be stubborn about it. The decision not to go to University was one of those times. I had a moment and I knew I had my mind made up, I didn't want to go...and I was always in two minds about it from the moment I had filled out my UCAS application. I'm quite a confident person I would say, but it's taken me a long time to get to a point where I'm like that...when I was younger I would never ever speak my mind or say something that I thought had to be said, I hated confrontation! and I still do. However my stance on it now is that if I feel like I should say something I will, I do my best not to allow myself to let people walk all over me. Although, working in a supermarket means that side of me has to stay put because I can't exactly challenge some of the general public on their inappropriate and rude attitude. I say all this, but there is a side of me that's shy, and I have quite an anxious mind so sometimes, I don't do the things I think I can do or have to do, like talk to someone about something e.g at work, because I get nervous. And that's just what I'm like!

My family are everything. My mum especially is my world and I don't think it's possible to love her any more than I do. I am so grateful to have the parents and the family that I do, we are all very close and I really enjoy spending time with them. All my friends went to University, and like any other child/teenager, I went through many groups of friends and had and fell out with many people...but after school has finished, I only really properly stay in contact with two of my closest friends, and I'm okay with that, plus I've made friends outside of school and getting to know new people at work is cool. I enjoy listening to music, I listen to most things apart from rap, RnB, House, Dubstep etc. I don't like any of that kind of music. I often look on YouTube to see if I can discover any new songs that I might like, but it can't be any old song, I find that I really look at lyrics, I like songs that have meaning.

I am far more creative than I am academic. I would much rather draw a picture than do maths. I used to love it when the teacher in Primary School said we had to colour things in, whereas a lot of my peers would get grumpy about it and protest and state how much they hate colouring in, and this attitude continued into secondary school even though having to colour things in became a very rare occurrence. I have a tattoo on my arm of a Hummingbird, I've always wanted a tattoo and I'm so glad that I actually have one because I love it and I'm even more glad that it has meaning behind it. I find a lot of joy in looking at the sky, I am in awe of it every time there are beautiful colours or wispy clouds and I almost always have to get my phone out and post a picture of it even though a camera can never do it justice. Nature is a wonderful thing, and trees are another thing I like to look at. Ironically though, I am really afraid of wasps and so although summer comes with beautiful weather, the wasps are enough to keep me inside the whole day. No wonder I have low vitamin D levels!

I'm the kind of person that can accidentally come across as a bit rude. I feel like sometimes my personality doesn't know how to handle certain tones of voice from people, or something like that, I can't explain it. But I know this is a bit of self-proclamation but I am actually a nice person! and I'm not saying it in a sarcastic way, and I hope I'm not deluded but I think I'm kind and that's something that I pride myself in. I will only ever purposely be rude/abrupt to someone if I feel like it's necessary but even then I feel guilty, working in a supermarket and going to school has taught me that there are people out there who are rude because they have nothing else better to do and have a bad attitude, or because they think it's "cool". I often kept my distance from the "popular" kids in primary school because they were the kind of people that had "private chats" about things where really it was just an opportunity to be cruel about someone. But I would say that there is such a thing as being too nice, and to be too nice I think is to let people in this world walk all over you. Never let that be a thing.

I went on a bit of a ramble there, but the point of all that is that yes, I live with Type 1 Diabetes and people say to me "Why haven't you blogged in so long?" one of the main reasons is because I run out of things to say...yeah, I run out of things to say about a disease that demands so much attention and co-operation from the person living with it...but it's true- and do you know why that is? because it is not my whole life. My Type 1 Diabetes is a part of me, and yeah I could probably sit and talk about it for a long time but sometimes I don't want to, and I could also sit and talk about myself and who I am for a long time like I have just done. But I've run out of things to say about myself!

So here I am, telling you all about me instead of all about my diabetes, and this isn't aimed at anthing specific but you get to see a bit of my personality, and maybe understanding my personality is a good thing actually because then maybe you can understand my blog, and my sporadic posts!

-Ellie

Thursday, 7 January 2016

Thoughts on adult clinic

I turn nineteen years old in July this year. That means that I am coming to the end of my time with my current diabetes team. Although I spent the first year of my diagnosis under the care of my local hospital, my parents and I didn't like it and so they got me referred to a hospital in London. I've seen the same consultant for the past 6 years, I have been under the care of that hospital for as long as he's been working there. 6 years ago I didn't really have an opinion on them, but 6 years later and I'm feeling incredibly disgruntled to be leaving them. As my consultant said yesterday, I've "struggled to have diabetes" which is true, and what an unforgettable struggle I have had, and I consider myself lucky to have had the amazing diabetes team that I have- who absolutely never ever gave up on me. Appointments after a not-so great A1c result almost always ended with "We'll get there", it's been a true team effort all the way, and now it's a team effort to get me settled with a whole new diabetes team, at a whole new hospital.

You're considered to be an adult in the eyes of the NHS at the age of 16. I've been admitted to an adult ward a couple of times, and on one occasion I felt totally unsettled and I cried, I was 16 years old and surrounded by 3 dementia patients which wasn't a nice experience at all. I'm 18 years old now and moving to adult clinic in time for my 19th birthday, and I don't feel ready in the slightest. If I'm totally honest the adult world of diabetes is unnerving, and I feel like I'm going into it too early, I'm still not perfect with controlling my diabetes and I feel like it's going to be hard to transfer all of that over to a new consultant from one who totally understands me and my struggles. I also get the idea that I won't see the same consultant every time, and I'm concerned that I won't receive the same level of support...it seems as though children and young adult clinics have the capacity to support you at a more intense level, where as adult clinic probably doesn't. I don't want to become just a number, I don't want to become just something that can make up targets, but I see it being like that. right now the consultant that I have could tell you my whole story with diabetes, as he did so yesterday at my transition clinic appointment, but I feel as though no one could be like that in the adult world of diabetes. Don't get me wrong, the team that I met yesterday were very nice, I just have a general apprehension about the whole thing.

What also makes me feel odd is that I've seen the same consultant every 3 months or less for 6 years, and when I move to adult clinic that's it. And your consultant knows most of the details about your life and your diabetes and your deepest feelings about things and you spend time building up trust with someone and then you cut off contact because you're no longer under their care and in the moment that you're their patient all of it is so important, it's so important to understand someone that you regularly come into contact with, but when it's time to move on it's all forgotten because you're not theirs to deal with any more. That's strange to me, and it bothers me, and maybe it shouldn't but it sort of does?

I had the support of a psychologist for the past year, and then she left to go on maternity leave, and I cried on my last appointment with her because the idea of not being able to talk to her about my issues any more unsettled me...and it took a long time for me to agree to see a psychologist, so when I found out she was leaving I was disappointed, I truly was. And I thanked her for being such a big help to me and she thanked me instead, for talking to her and I guess from every one she sees she learns and I like to think she learnt from me as I learnt from her.

My new hospital are savage, they do random blood glucose tests at the same time as checking your HbA1c...and they try to take blood from your ear lobe...since when was that even a thing? No body is coming near my ear lobes with a needle and drawing blood from it...that's what my fingers are for. Why would I even agree to having my ear pricked, it hurts enough on my hands!! Haha. I've heard nothing but good things about the hospital I'm about to move to, I'm not complaining, just comparing them to the diabetes team that I've been so fortunate to have for the past 6 years, and I suppose I have an expectation that may or may not be fulfilled by them.

In the past couple of months my insulin requirements have reduced, because I no longer experience the same raging hormones that I did as a "younger teenager", and as I have grown, so has my diabetes. And so this year, in 2016 my diabetes is fleeing the nest like a baby bird, and it's up to me to keep it flying.

-Ellie