• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

What to do after so long?

bexblu

Member
Messages
19
Location
London
Type of diabetes
Type 1
Treatment type
Insulin
Hiya to whoever is reading this. We all know how hard it is to break a bad habit.. and I'm really struggling.

I've been Type 1 for 17 years now, diagnosed at age 4. My good days seem to be just that, a few days, and my bad times seem to be never ending. Why can I not change things for myself? I just find it so hard and get so frustrated and can never keep it up. My HBA1C is 14% and I'm not able to get the pump - I have been trying for 4 years now.

I feel completely lost, and I guess a bit scared too. I want to do well but my motivation just isn't there, I don't know why I find it SO hard to deal with this. Why I can't get to grips with it, even a little bit?

I also have suffered with depression and anxiety for many years now too - which really doesn't help me in all this.

I'm always told to try do one blood test a day and I don't know why I find it so hard to start small and work my way up.

I've had all kinds of therapy and nothing gets to the bottom of it. I get so annoyed that I can't just do it.

Been this way since I was 11.. wish i could do this right and prove to myself I can make this work..

Thanks in advance all x

Becky
 
@bexblu Hi and welcome to the forum!

This disease is a horrible monster, and I think there are very few people on here who haven't struggled with it at some point, whether for a short while or for more extended periods. There is no 'right' way to do it. In my experience, the diabetes feeds the depression, which then in turn causes you to take less care of your diabetes, making you feel worse. It's really hard work.

Something I find helpful is writing it all down - every time I test, inject, etc. It helps with looking for patterns and so on, but I have ot be careful not to use it to beat myself up. It's more, though, that the process of writing it down just acts as a kind of 'tick sheet'. I can't really explain why I find it so helpful.

Do you have a DSN? Your care team may well have a psychologist that you can be referred to.

I have also found this forum really helpful - as a reminder that we are not alone with what I find to be a very lonely disease. Feel free to rant and rave. We all need it.

Are you carb counting? I know it can be a lot of effort sometimes, so something I do for when i am feeling very low is go to one of my staple meals that I know the exact carb value, exact dose for, and also the way it's likely to behave afterwards.

You can make this work, I promise. Please believe me when I say that I have been where you are, and I have more than a few days a week where I am still there. But the diabetes monster doesn't deserve to win. You are more than your diabetes.

Sending you hugs
 
Put the past behind you @bexblu Dont let it overshadow your decisions about the future.

If you don't look,after your diabetes, it wins. That's how I see it. Now that doenst mean you can beat it totally of course, but you can beat it down into its cage, nasty thing that it is.

Do you think you're not motivated because you haven't properly accepted it? Or because it's a way to,avoid facing your fears? Or is there another reason? I know you e said you don't know, but you must have a suspicion.

Can you say a little more about your daily routine - or lack of it? Do you test at all? Do you carb count? Do you inject when you should?
 
hi @bexblu
welcome to the forum.

when I was your age ( and had been diabetic for about 7 years ) blood testing didn't exist -- we could test urine but that was so not cool and not precise ----- what I am getting at is that when they introduced blood testing I jumped on it like the new cure -- cuz finally I could know when I felt sh!te ! and what it meant ----- fast forward to now --- knowing where you are helps to decide the path forward -- without blood testing you are ( literally ) pissing in the wind.

this probably sounds harsh but I am sending it with all the love that a parent that loves their child or grandchild could give--- I want you here on this planet for another 75-80 years please xxx
 
Hi @bexblu !
I was in a similar position a few years ago. I was diagnosed aged 2, then aged 13-20 it was chaos. I remember (and still do sometimes) feeling so overwhelmed with how bad everything was and how much I had to change. The only thing that has really really changed things for me is how I view high blood sugar. I used to not test so I wouldn't need to know, but ofc this isn't the best plan! It took me a good few years to re train my approach o high blood sugars, and stop seeing it as a personal failure and start viewing it as just a number that I have to react to. I still feel guilty when things aren't going to plan and frustrated and overwhelmed, but taking that big source of anger and angst away was such a relief. Not sure if any of that makes any sense but feel free to message me directly if you need to rant or just want to talk. Every day is a new day.
 
bexblu said:
I just find it so hard and get so frustrated and can never keep it up.
Click to expand...

What are the reasons for the frustration? Is it because you are getting results you don't want to see? If that's the case you do need to try not to think of good results and bad results and start seeing them as just numbers that help you decide what action to take. Do you understand what action to take on seeing a result of 3 or 7 or 14? Do you know how to analyse the results to see if basal needs reviewing of if bolus is working properly? Have you done a DAFNE course or read think like a pancreas to help give you knowledge about what to do with the results?

Is it frustration at actually having to do testing? If it's annoyance at physically having to test you might want to consider a libre for a little while. You'll be able to see what you are missing by not testing then.

You say you want a pump. If you don't test, a pump isn't for you. A pump won't magically control your diabetes, it will help you control your diabetes if you're willing to put the work in to use the pump.

Whether you want to or not, whether you're motivated or not, you don't have a lot of choice. You have to test to know what your blood sugar is doing so you can take steps to improve control of if. With a hba1c of 14% you do need to take steps to improve control of it if you want to keep healthy. So testing is a not choice thing. You just need to make it an easy thoughtless part of your routine - make it something you do on auto pilot without even thinking about it.
 
Hi BexBlu

I see that this is your first post... well done!

As I am sure you have already realised you are not the first nor the last person to ever struggle with this blinking thing and my post is just going to reinforce that. Having said that it does not mean that your problems are trivial by any stretch.

I have been Type I since I was 11 (18 years) and I don't think there has been a day that I have found it easy. I will often think "I have this!" then by bedtime I have found myself lose all motivation to the point I had a series of morning blood tests for about 3-4 days and that was it. But it was a baby step, that one blood test meant I had started the day on a positive. Maybe this would work for you too.

I have tried the shiny new notebook from Paperchase (with matching pen) which didn't really motivate me much but I have heard it works well with others. What I have found works is an app, now it has taken me a while to find a one that works well for me but since I have my phone in my hand most of the day it is perfect. I am using a one called mySugr.

The hardest thing I have had to deal with it is it becoming a massive part of my life, I suppose I had been treating it as secondary and something that only required my attention if I was feeling a bit rubbish but it's not. It is taking up a lot of my time but I am starting to see the benefits, slowly but surely, and I hope one day it becomes second nature.

My point is baby steps. Set yourself a small achievable target and aim for it.
Also...Find ways that will make your life easier, apps, notebooks, a Facebook support group (and this forum obviously). Read up on things and sometimes going back to basics helps too by retraining your brain.

Good luck!
xoxox
 

______________________

Hiya, I have always been told I am too hard in myself. When I see a bad number I instantly feel I have failed. One thing I credit myself for that I have never fully given up. I've been close to doing stupid things but I always bring it back last minute.

I have seen this forum many times before and it looks helpful to be apart of, and I had an account some time ago but as I always feel I'm failing I didn't want to post and then let other people down.

I do have a DSN but my hospital isn't very good, I can't communicate well with them.

I think it will be helpful to start writing it down, maybe then I will visually see the progress and like you say, notice patterns.

I am a very plain eater (I really only eat high carbs and sugar filled things, probably doesn't help) so I know roughly what to give for meals, otherwise I find it too time consuming and it also makes me feel rubbish to know what I'm eating if that makes sense?

Appreciate your reply x
 

__________________

Hi there,

I know, I never have fully given in, however I just find it hard to keep up and I think over the years I've just been told so many times about the effects and what I should be doing and not what I've actually achieved so my mind has just got caught up in that thinking...
I have accepted it, only recently but I have. I just still get overwhelmed by it. I think when it's going good, I'm already thinking about the next time it's going bad, and I set myself up to fail. When it's actually going okay I feel weird because I'm not used to it, and I think I fear the change slightly.

I don't carb count, I just know what to give for meals (I don't have a varied diet) and I don't always give insulin, I test in mornings but that's about it. I'm always remembering to do stuff, but I just choose not to (I procrastinate it)

Thanks in advance
 

____________
Hiya,

I really appreciate this

I wish I could see my diabetes from another point of view - Or literally start my knowledge from scratch, I feel I've built up such a bad... let's say 'relationship' with it, and I've clung onto it for so long that I just can't change my view on it, and I am a very stubborn person, so I know it's myself that's the problem and change is very much possible, but I'm not sure as to why the leap is so difficult for me. I know things can't change over night but I really always do expect myself to just be doing it right immediately. I sometimes just wish I could forget what I knew and start again, think having it so long is more of a curse than a blessing for me...

Thanks in advance xx
 

______________________________

Hi there,

Yeah I'd love to be able to re-train my thinking, just going over old stuff and replacing it with new, quite like using a used tape and replacing what was on it with something else.

I always get told 'but you don't really know any different, it's better to get it young' no, it's not good at any age, you feel you have to mourn the loss of something. I didn't mourn at age 4, but age 11 when I realised that I have to do this all for the rest of my life, and that holidays away from it doesn't exist, and breaks aren't a thing with it, unless you want to get sick.

I'd like to go back to basics but then I instantly want to be good at it, and taking it slow drives me mad, which makes goals hard to achieve!!

Thanks in advance xx
 

As long as you eat the same carb amounts and know what each meal requires, then that's ok I totally get why it's overwhelming. It's easy to start thinking bad and negative things, but how I see it is that we only have so much brainpower so it's a waste to use it on negative thoughts. Try to turn any negative thoughts into positive ones. It sounds trite, but it really works. So stead of thinking "I bet my sugars will be bad again tomorrow" change that to "My sugars have been good today and even if they're not as good tomorrow, I've still done well".

Type 1 is a sneaky beast. You need to watch it - by testing. Testing is kmowledge and knowledge is,power. Test, assess, react if necessary.

Perhaps try to add one or two more tests in to your day? They're for your benefit and they'll help you enormously. Don't worry if you get a higher result. It's informatiin for you so don't see it negatively. Feel happy you spotted the high and that you can act (correction if necessary)
 

_________________________________

Hey there

Honestly I did chuckle about the pen and paper! I have all sorts sitting in my room, my reminder of 'attempts' at motivating me, funny to think a pen and book from paperchase could do all that haha!

I pretty much always do my morning ones, or whenever I wake up. I get frustrated I don't do any more than that, and I have so many failed attempts

I also have the mysugr app.. and in fact pay for the extras each month, but haven't used it since October.. I honestly don't know why I can't keep the app up!!!

See my mum is also Type 1 (hers and mine isn't related) and the way she views it is something next to her, not something in front and in the way of her life, and when I describe it as a 'fight' she says it's a fight I am never going to win, because I should not be fighting it, I should be working with it, and make it something small in my life, and not put it under the magnifying glass the whole time.

I think the next thing I want to try is working with another diabetic and helping one another to stay on track with it and just chat and rant to each other and relate xx
 
Hi @bexblu - it's a good thing you are here and discussing this rather than sitting there wondering where to go next, that's so positive.

I try to keep my type 1 in my back pocket, it's there but not something I try to give too much attention to until it starts affecting my life, then I give it a good bash and throw it back in my back pocket, I don't like my type 1 to affect or influence what I do, I am the boss and if I have to go shopping I make sure I test and am above 6 and have glucose ready if my t1 wants to try and spoil my day, being prepared and testing frequently means it doesn't impact as much as it would like to on my life. Testing is key to managing my t1 it tells me if I need to take action or if I can carry on as normal.

Try and get your DSN to get you on a DAFNE course, you will learn so much and meet other t1's, it's a great course to re focus and get back on track, and also talk to us, we understand
 
@bexblu @**shell** I did the shiny notebook from paperchase! I normally don't enter, because my bank balance is finite, but on this occasion I engaged in some unabashed bribery of myself. Now, there are still some days when the prettiest notebook in the world is not going to get me to put pen to paper. What about, as a start, getting a notebook and having Monday: Breakfast, Lunch, Dinner, on separate lines, and doing that for each day for a week? For me, I don't like seeing gaps, so that can be a good motivator. It's also a way of looking back at the week and thinking, hey, I didn't do that badly, I managed to test 12 times, and getting a little 'win' feeling from that.

I definitely second the suggestion of a DAFNE course. If you aren't happy with your care team, you can ask to be referred to another clinic - I believe you can do this through your GP. A fresh start, with a team you feel more supported by, might be helpful for you.

Do you drive? If you drive you absolutely must test beforehand, or you will be invalidating your insurance, among other things.

Do you know any other diabetics? Obviously there's your mum, but outside of your family? I went to a 'meetup' for the first time this Saturday just gone, and that can be a really positive experience as well.
 
Hi @bexblu,

This literally was me a few years ago! I was diagnosed aged 3.5 (I am now 27) I dont think I picked up my blood tester during my teens at all. And no amount of other people telling you to test is going to work I am afraid (I cannot tell you the number of docs appointments where I "promised" to test more!)

For me, its about routine. I told myself I was going to test for 1 week, 4 times a day (morning, lunch, dinner and bed). 1 week is short enough to have the motivation to do it for me! I did it for a week and then had a week off. I then went back and tested for another week. It became routine to me somehow and now I test every day. Also, this might sound weird, but get a meter you like. I currently use the Accu-check mobile where you dont have to insert a new test strip every time. For me this cuts the hassle of testing so its easier. Its quite big though, so I know others who want a small meter, or one that hooks up to bluetooth or whatever. There are so many options out there!

DAFNE was also really good, not only for the advice they gave but also to meet other people with diabetes. I did it in 2014 and we are still in contact. DAFNE also taught me that every diabetic is different. There was a guy who took 1 unit of insulin for a lunch which I took 4 units for. Then again, there was a woman who took 6 or 7 units. Everyone is different. Where in the UK are you? There might be some local groups near you that you could go along to which I also really liked.

Dont give up. Dont beat yourself up. This is hard. Some days are good, some are bad (today I woke up with a sugar of 14.8!) But you have totally got this!

Becky x
 


Yeah it can be overwhelming. I find it really hard to cope with diabetes, depression and anxiety, I find that they make a toxic mix.. It's like someone giving you a drink that's spiked, it just doesn't end well for me. But I admit, and I have to give myself credit for how far I have come, and I do forget what I have done. I am on medication for my depression, which has eased it, and had CBT for my anxiety which allowed me to get a job last year that I have thrived in since. I just find with my diabetes, I'm super hard on myself. With my depression I accept bad days and let them run their course, but with my diabetes I don't. I just see myself as a failure even though I know I am trying.
I think I do need to be more self aware of when a negative thought comes in, and do my best to change that where I can.
 

Hiya! Thanks for link, I've been taking a look, nice to know I'm not alone, scary how someone feels that similar!

Appreciate this
 
If you're trying with your diabetes, then you're not a failure

I really recommend changing your way of thinking. It sounds silly, but it keeps me from stressing too much.
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…