I already feel bad posting this, but I'm getting very close to the end of my patience. I'm not sure if I've just had a bad week (I don't think I have) or things are just all getting on top of me, but I just had to write this to let off some steam...and maybe make others understand what some days living with diabetes is actually like.
Right now, I just feel like I'm lost. The more I try to manage my diabetes, the more problems I seem to have. As soon as I 'fix' one problem, another one emerges. I still haven't heard any news about the pump, but I know I just need to be patient...but that emotional rollercoaster isn't helping.
I'm fed up with testing ALL the time.
I'm fed up with all the injections, and adjustment injections.
I'm fed up with having to inject my basal twice a day.
I'm fed up with not being able to just eat, without having to numerically analyse it.
I'm fed up with having to test and make sure my levels are at a certain number before driving...TWICE a day!
I'm fed up with hypos before I go to bed, making me sleep deprived,
I'm fed up with hypos or highs at inconvenient times that stop or delay me doing something. I'm just plain fed up.
For once I'd like to get up, without having to think about anything more than getting dressed.
I'd like to just eat, just because I was hungry, with no other thought.
I'd like to just get in my car and drive.
I'd like to just decide to go to bed...and that it could just be so, without a blood test, adjustment dose, and then a basal injection.
I'd like to be able to leave the house with just my keys and phone...without checking I have my blood test kit, that I have enough strips, that I've got my injection, spare needles, spare cartridges, fast acting sugar for hypos, slow releasing carbs for recovery and a book to record it all down in.
I don't want this post to reflect negatively on diabetics, but sometimes, just sometimes, it can all seem like too much. I know I have a lot of things to be thankful for in my life, and things I should be thankful I haven't got.
I'm sure I'll be back to being positive about my D soon, but for now, this is where my head's at.
Friday, 2 March 2012
Wednesday, 30 November 2011
When does it get easier?
So it's been a while since I last posted....
I've now finished BERTIE. The course was amazing. I made some really great friends, and now have a fantastic support group when and if I need it, and that is invaluable. I learnt so much over those 4 days. I'm still learning now. Carb-counting is better than it was, but it's going back to the drawing board on the things that need to be weighed rather than guessing that's the hardest part.
I slacked for a few weeks after finishing the course, but I realised it and did something about it and now I'm back on writing everything I eat, inject and test results down - diabetes is too complicated to manage if you don't have all the information available. Without these figures you can't look for any patterns or trends and try to make basal or bolus adjustments. And I am not expert enough to go without these pieces of information.
Last week I also joined the gym...this may end up being a separate blog as I suspect it's going to take a lot of getting used to! Contrary to everything that's happened to me when exercising in the past, so far every time I've gone I've ended up in the high teens...and then have to stop as I learned we're not supposed to exercise over 14mmols/l. This could be a good thing though as it will help my weight loss if I don't have to eat in order to exercise, but I need to get the balance right. We'll see what Body Combat does to me tonight!
It is all taking it's toll though. Maybe it's the time of year, maybe it's too many late nights, maybe I'm trying to do too much, but I am incredibly tired (and not through high bloods!!). I am also finding myself forgetting things and it's harder to concentrate. These are the things that are really worrying me. Maybe there's just not enough room in my brain to learn a subject that could be compared to studying for a neverending degree, on top of full-time work, trying hard to keep up with close friendships and seeing family, watching my beloved Charlton, going to the gym, and trying to be a supportive wife.
The problem is that the more I seem to learn, the more there is that I don't know. It just feels as if I'm not getting anywhere, and I hate that thought that I have a disease that I live with daily but I don't even understand it. I should know all there is to know, right? But I don't. I'm trying but I think I just have to accept it's going to take time and just keep trying to build on my current knowledge. Yep, small steps it is....ooo what to learn about first..?!
I've now finished BERTIE. The course was amazing. I made some really great friends, and now have a fantastic support group when and if I need it, and that is invaluable. I learnt so much over those 4 days. I'm still learning now. Carb-counting is better than it was, but it's going back to the drawing board on the things that need to be weighed rather than guessing that's the hardest part.
I slacked for a few weeks after finishing the course, but I realised it and did something about it and now I'm back on writing everything I eat, inject and test results down - diabetes is too complicated to manage if you don't have all the information available. Without these figures you can't look for any patterns or trends and try to make basal or bolus adjustments. And I am not expert enough to go without these pieces of information.
Last week I also joined the gym...this may end up being a separate blog as I suspect it's going to take a lot of getting used to! Contrary to everything that's happened to me when exercising in the past, so far every time I've gone I've ended up in the high teens...and then have to stop as I learned we're not supposed to exercise over 14mmols/l. This could be a good thing though as it will help my weight loss if I don't have to eat in order to exercise, but I need to get the balance right. We'll see what Body Combat does to me tonight!
It is all taking it's toll though. Maybe it's the time of year, maybe it's too many late nights, maybe I'm trying to do too much, but I am incredibly tired (and not through high bloods!!). I am also finding myself forgetting things and it's harder to concentrate. These are the things that are really worrying me. Maybe there's just not enough room in my brain to learn a subject that could be compared to studying for a neverending degree, on top of full-time work, trying hard to keep up with close friendships and seeing family, watching my beloved Charlton, going to the gym, and trying to be a supportive wife.
The problem is that the more I seem to learn, the more there is that I don't know. It just feels as if I'm not getting anywhere, and I hate that thought that I have a disease that I live with daily but I don't even understand it. I should know all there is to know, right? But I don't. I'm trying but I think I just have to accept it's going to take time and just keep trying to build on my current knowledge. Yep, small steps it is....ooo what to learn about first..?!
Tuesday, 11 October 2011
DAFNE/BERTIE
On Friday I attended my first week of BERTIE (my diabetes team’s version of DAFNE) for T1 diabetes.
DAFNE is Dose Adjustment for Normal Eating – also known as carb counting!
BERTIE is Broomfield’s Education Resources for Training in Insulin and Eating – also known as carb counting!
I’d been excited about this for weeks – the thought of learning so many new things that were going to help me control my diabetes better. As I walked to my diabetes centre, I started to feel really nervous – what if no-one likes me, what if they’re all better diabetics than me, what if they think I shouldn’t be there….the list was endless. Thankfully as soon as we were all together, you couldn’t shut us up!! It was like a big relief for everyone there to finally have people to talk to who would understand and know what they’re going through. There’s 8 of us in my group, which includes a wide range of people – different ages, different attitudes, different sizes, different experiences, different views on diabetes…BUT we are all there to learn the same thing, and that was what I needed to remember. My group are all lovely people and we all immediately bonded. I really hope they will all get out of it what I have already from that one afternoon.
There were several things I learnt quickly – 1. I knew more than I thought I did - result, and 2. that unfortunately, the things I did know were all only things that I’d learnt from joining www.diabetessupport.co.uk earlier this year. Had I not have joined that forum, I would never have known most of the answers. And I’d been living with diabetes for nearly 20 years, without that knowledge. Shocked and embarrassed were not the words. Still, I didn’t dwell…the point was that now I did know. It goes to show how great the forum is and how rubbish my own care was!
In this session we went over the fundamentals – what is diabetes and what is happening in your body. We looked at the various different types of diabetes. We looked at ratios and calculating carbs. And left with homework!
Here’s some of the things I learnt that day that I didn’t know, or had heard, but only through 3rd parties:
- I’m supposed to change my needle before every injection (I’d never been told that!)
- To inject 2 units before every injection into the air
- Driving regulations – supposed to be over 5.5mmols before driving, if not, you could be banned FOREVER if you cause an accident.
For homework ready for next Friday, we were given individual carb to insulin ratios and insulin to correction ratio. Idea being to see how we get on this week and then try to 'fine-tune' next week. This homework will probably warrant another blog post!
So here’s to carb counting!
Monday, 19 September 2011
The cost of diabetes
I have never really worried, or given much thought to the costs of having diabetes, other than getting mad when bad press goes on about what a drain we are on the NHS.
Until, that is, I ran out of blood test strips whilst on holiday earlier this month (I know, epic diabetic fail!)....in my defence, I never really tested anywhere near as much as I should until recently, so running out of test strips was not something I'd ever really needed to worry about.
When I get mad at the reporters or supposed 'documentaries' telling the world what a drain diabtetics are on the NHS, there's a big part of me that just wants to scream at them...."I DIDN'T ASK FOR THIS!!!!!!!!!". But my thoughts never really went any further than that. But, although I believe we should be entitled to it, I do believe we should be appreciative of what we actually do get.
On holiday I ended up in Boots as I felt I deserved to pay for my test strips for running out in the first place, and also because I was too embarrassed (& lazy) to go to A&E and admit to a dr I'd run out and get them to write me a prescription and then go back to Boots! What I wasn't expecting, was the ridiculous prices!! I had no idea they cost that much - £28 for 50 test strips, which with the way I'm testing at the moment would probably last me only 10 days!!!! Never before than at that moment did I have such an appreciation for all prescriptions I've had, and all those that I have yet to have.
And furthermore, that was only the cost for 10 days worth of test strips....I cannot imagine the costs associated with the insulin, needles, blood test kits (although I did see in Boots you could buy a kit for the same price as the strips!)...and then you get all the annual diabetes check ups with consultants, your appointments with your DSNs, the dietician, your blood tests, your urine tests, eye tests....on top of that you then have courses like DAFNE. The list is just endless, and I'd hate to try and cost out what treatment I have already received, let alone what it's likely to be in my life time.
I also have a newfound respect for T2s who have doctors who won't prescribe test strips and so if you want to monitor your levels and take control of your diabetes care, you have to swallow the cost. I salute you. I think that would be enough to make me throw in the towel and admit defeat.
And next time I get a prescription made up, I will have a whole new outlook and appreciation.
Until, that is, I ran out of blood test strips whilst on holiday earlier this month (I know, epic diabetic fail!)....in my defence, I never really tested anywhere near as much as I should until recently, so running out of test strips was not something I'd ever really needed to worry about.
When I get mad at the reporters or supposed 'documentaries' telling the world what a drain diabtetics are on the NHS, there's a big part of me that just wants to scream at them...."I DIDN'T ASK FOR THIS!!!!!!!!!". But my thoughts never really went any further than that. But, although I believe we should be entitled to it, I do believe we should be appreciative of what we actually do get.
On holiday I ended up in Boots as I felt I deserved to pay for my test strips for running out in the first place, and also because I was too embarrassed (& lazy) to go to A&E and admit to a dr I'd run out and get them to write me a prescription and then go back to Boots! What I wasn't expecting, was the ridiculous prices!! I had no idea they cost that much - £28 for 50 test strips, which with the way I'm testing at the moment would probably last me only 10 days!!!! Never before than at that moment did I have such an appreciation for all prescriptions I've had, and all those that I have yet to have.
And furthermore, that was only the cost for 10 days worth of test strips....I cannot imagine the costs associated with the insulin, needles, blood test kits (although I did see in Boots you could buy a kit for the same price as the strips!)...and then you get all the annual diabetes check ups with consultants, your appointments with your DSNs, the dietician, your blood tests, your urine tests, eye tests....on top of that you then have courses like DAFNE. The list is just endless, and I'd hate to try and cost out what treatment I have already received, let alone what it's likely to be in my life time.
I also have a newfound respect for T2s who have doctors who won't prescribe test strips and so if you want to monitor your levels and take control of your diabetes care, you have to swallow the cost. I salute you. I think that would be enough to make me throw in the towel and admit defeat.
And next time I get a prescription made up, I will have a whole new outlook and appreciation.
Friday, 2 September 2011
The feelings of isolation
As I have started paying more interest in managing my diabetes, I have started to realise how alone I am. Or how alone I have been. I have spent nearly 19 years dealing with this pretty much on my own...I know I've had health teams and family, but the thing I'm realising that I really missed out on, was not socialising or being friends with any other diabetics. I didn't set out to befriend any as that kinda seemed weird, but I also didn't really meet any diabetics either. As such, I've spent a lot of my time trying to live the same lives as my friends and not really talking about my diabetes at all. I always made sure my friends knew what to do in an emergency, but I had no-one to discuss life with diabetes with, no-one to discuss issues, or even just to remind me that I had diabetes and what I probably should or shouldn't be doing to look after myself.
It's only been in the last year where I've started becoming intrigued by my diabetes more, and realising there's a whole 'nother world out there. The diabetic online community (DOC) is huge. It was reading things in various support forums that I realised I needed to go back to diabetes school. I had no clue even on what treatment was available! I didn't even know people could have pumps now (quite ashamed to admit that).
I'm not one to make friends just because, say, they are diabetic, but I was starting to realise the benefits and also really a need for having someone to talk to who was also T1. Some people can do this, and that's great if they can, but it's just not for me. I have however, started talking to a guy at my work who is diabetic (I used to talk to him anyway, but we never spoke about diabetes). It's amazing how many of the same problems we have, and it's refreshing that in a lot of respects we are going through the same thing. Talking about things and realising I'm not weird and that it's ok not to be the model diabetic is like a huge weight lifted off my shoulders.
Small but very rewarding steps :)
It's only been in the last year where I've started becoming intrigued by my diabetes more, and realising there's a whole 'nother world out there. The diabetic online community (DOC) is huge. It was reading things in various support forums that I realised I needed to go back to diabetes school. I had no clue even on what treatment was available! I didn't even know people could have pumps now (quite ashamed to admit that).
I'm not one to make friends just because, say, they are diabetic, but I was starting to realise the benefits and also really a need for having someone to talk to who was also T1. Some people can do this, and that's great if they can, but it's just not for me. I have however, started talking to a guy at my work who is diabetic (I used to talk to him anyway, but we never spoke about diabetes). It's amazing how many of the same problems we have, and it's refreshing that in a lot of respects we are going through the same thing. Talking about things and realising I'm not weird and that it's ok not to be the model diabetic is like a huge weight lifted off my shoulders.
Small but very rewarding steps :)
Wednesday, 31 August 2011
What am I doing about it?
Ok, so having realised there is a whole load of things that I don't know - whether through ill-advice or my own forgetfulness (understandable over 19 years!!) but probably both.
So far, I have spoken to my diabetes team and they have been great. Initially the appointment was to talk about problems I was having with my eating, so this came out of it as well. They have enrolled me on their own version of DAFNE (Dose Adjustment for Normal Eating) which I am attending one day a week for 4 weeks during October - I'm very excited about this.
I have also used an online learning programme to try and get some more facts about diabetes - http://www.bdec-e-learning.com/ I need to go through this in a lot more detail, but I am hoping that this and the DAFNE course will work off each other and I should come away with a much better understanding of what it is I am supposed to be doing.
One way or another I am addressing my problems and also my need to re-educate and accept my diabetes. My knowledge of diabetes, in all it's detail could probably fit in one or two paragraphs these days....but how could I ever hope to manage something I don't truly understand??
So far, I have spoken to my diabetes team and they have been great. Initially the appointment was to talk about problems I was having with my eating, so this came out of it as well. They have enrolled me on their own version of DAFNE (Dose Adjustment for Normal Eating) which I am attending one day a week for 4 weeks during October - I'm very excited about this.
I have also used an online learning programme to try and get some more facts about diabetes - http://www.bdec-e-learning.com/ I need to go through this in a lot more detail, but I am hoping that this and the DAFNE course will work off each other and I should come away with a much better understanding of what it is I am supposed to be doing.
One way or another I am addressing my problems and also my need to re-educate and accept my diabetes. My knowledge of diabetes, in all it's detail could probably fit in one or two paragraphs these days....but how could I ever hope to manage something I don't truly understand??
Why am I here
I thought I'd start with why I'm here; why am I blogging.
I've had T1 diabetes for nearly 19 years now. I had just turned 10 when I was diagnosed, in my final year at primary school. At the time my parents took responsibility for my diabetes management - they were the ones the doctors, consultants and dieticians spoke to about caring for me. I'm not sure if I was too young to understand really, or if it was just too much to take it. My parents did my injections for me (at this point I was only on 2 a day) and were responsible for counting my exchanges (yep, that's how long ago it was....carbohydrates were counted in exhanges, not CHP as they are now).
For years I suppose I grew up with my diabetes being managed for me. I don't really remember the ins and outs of it all, but my control was good, I was rarely in hospital unless I was ill and I was generally doing ok.
When I was half way through secondary school, I was put on MDIs and it was at this point when I really took over my own care. The freedom of being on MDIs was amazing, I had choices, and I could eat if I wanted, or not, rather than being forced one way or the other.
That was just over 10 years ago now. It's only in the past year or so that I have been introduced to the online diabetic community and just how much support there is out there. For all those years I'd lived with diabetes on my own. I didn't know any other diabetics, and I didn't have any friends who also suffered. I suppose I just got used to living with it, but not letting it get in the way. In finding the online communities and so much vast amounts of information, I realised there was a whole lot I didn't about, and lots of things I wasn't doing. I'd gone from an annual check up which consisted usually of 'have you done your blood tests, what units are you taking and are you exercising?', to information overload. There was this whole world out there! It was then that I realised I hadn't had any 'new' information about diabetes or managing my own diabetes since I was diagnosed. I slowly started realising things had changed....when had people stopped counting exchanges??, when had diabetes specialists stopped telling us we should have a mars bar for a hypo??, when did pumps come in (I hadn't even known they'd exisited).
And that's where I'm at now. I have a feeling it's going to be a long road, but a worthwhile one.
I've had T1 diabetes for nearly 19 years now. I had just turned 10 when I was diagnosed, in my final year at primary school. At the time my parents took responsibility for my diabetes management - they were the ones the doctors, consultants and dieticians spoke to about caring for me. I'm not sure if I was too young to understand really, or if it was just too much to take it. My parents did my injections for me (at this point I was only on 2 a day) and were responsible for counting my exchanges (yep, that's how long ago it was....carbohydrates were counted in exhanges, not CHP as they are now).
For years I suppose I grew up with my diabetes being managed for me. I don't really remember the ins and outs of it all, but my control was good, I was rarely in hospital unless I was ill and I was generally doing ok.
When I was half way through secondary school, I was put on MDIs and it was at this point when I really took over my own care. The freedom of being on MDIs was amazing, I had choices, and I could eat if I wanted, or not, rather than being forced one way or the other.
That was just over 10 years ago now. It's only in the past year or so that I have been introduced to the online diabetic community and just how much support there is out there. For all those years I'd lived with diabetes on my own. I didn't know any other diabetics, and I didn't have any friends who also suffered. I suppose I just got used to living with it, but not letting it get in the way. In finding the online communities and so much vast amounts of information, I realised there was a whole lot I didn't about, and lots of things I wasn't doing. I'd gone from an annual check up which consisted usually of 'have you done your blood tests, what units are you taking and are you exercising?', to information overload. There was this whole world out there! It was then that I realised I hadn't had any 'new' information about diabetes or managing my own diabetes since I was diagnosed. I slowly started realising things had changed....when had people stopped counting exchanges??, when had diabetes specialists stopped telling us we should have a mars bar for a hypo??, when did pumps come in (I hadn't even known they'd exisited).
And that's where I'm at now. I have a feeling it's going to be a long road, but a worthwhile one.
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