What to do after so long?

[bexblu]

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

I always get so anxious when speaking about myself, as I know that people may look at me and think why on earth are you complaining about your results when it seems you're not doing much to help yourself, for me mentally I find it really hard to get myself to just do it, forcing myself causes me to hit a really dark patch. I want it to become second nature but it's getting there, I think I view it as such an obstacle and have done for so long, that it's really hard for me re-train my thoughts to think it is anything other than a huge burden to me that controls my life.
I have been on a course, it was once a week for 4 weeks, and I did learn a lot and my care was at it's best then, because talking to other people face to face that understood was great, and just having weekly physical contact with people that got it made me want to do better. I find that I stray when left to it by myself..

 

[bexblu]

@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.

Yeah that's an idea I may try, see how that works for me for a week or 2. Visually seeing it may be of some benefit to me, I learn better visually and remember things that way too so it may be of some use to me.

I have now asked my GP (who is wonderful and extremely patient with me) to refer me to UCLH which I hear is amazing. So I am eagerly waiting to hear back. I would like to feel like although a professional is doing their job and they see other people, that I actually matter and they somewhat care about me.

I do drive, I do always test before hand as well, I always fear about my driving!!

I do know some, I have lots of online groups I a part of, but sometimes they are all doing so well I feel I can't speak up as I seem to always being doing so bad. I'm looking for a buddy at the moment to team up with who is in a similar boat to me!!
x

 

[himtoo]

I always get so anxious when speaking about myself, as I know that people may look at me and think why on earth are you complaining about your results when it seems you're not doing much to help yourself, for me mentally I find it really hard to get myself to just do it, forcing myself causes me to hit a really dark patch. I want it to become second nature but it's getting there, I think I view it as such an obstacle and have done for so long, that it's really hard for me re-train my thoughts to think it is anything other than a huge burden to me that controls my life.
I have been on a course, it was once a week for 4 weeks, and I did learn a lot and my care was at it's best then, because talking to other people face to face that understood was great, and just having weekly physical contact with people that got it made me want to do better. I find that I stray when left to it by myself..

that is a TOTALLY normal response -- all of us need to know we are not alone in this .

so glad you posted -- you now know you got team D ( all of us lot ) on your team

 

[bexblu]

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

I totally get the whole promising you'll test more.. that was quite something! I felt so ashamed every time I went back!! Recently I have been getting my mind and body into routine in many other ways, and a lot of stuff has come second nature to me now. I want to try get blood tests to be part of my routine so I know what is going on with myself more. I used to have the USB one, which I really liked but it was super expensive so I was put on the cheapest brand. I may go back to my USB one.

Yeah I met people too when I done a course, it was eye opening and my care for myself was great and I felt better about everything. I just wish I could of kept that momentum up for myself.
I am in North London, I looked at groups near me but it was really bad and no one my age was there, and no one was Type 1 so I never went back as I felt so out of place!

I've been trying today and my sugars have just said 'Nope' to me all day haha xx

 

[Juicyj]

Hi @bexblu dont be convinced that others are doing so well.. Ok a minority will of finely tuned it so it is intuitive but on the whole many t1's struggle so trust me you are not alone, try not to compare yourself to others, everyone treads a unique path in their management, you need to find your own path that works for you, I am happy to be your diabetes buddy, you are more than welcome to pm me each day and we can do a catch up to see what's working and what isn't, I know this is a lonely life on your own so happy to help

 

[beckysalvage]

I totally get the whole promising you'll test more.. that was quite something! I felt so ashamed every time I went back!! Recently I have been getting my mind and body into routine in many other ways, and a lot of stuff has come second nature to me now. I want to try get blood tests to be part of my routine so I know what is going on with myself more. I used to have the USB one, which I really liked but it was super expensive so I was put on the cheapest brand. I may go back to my USB one.

Yeah I met people too when I done a course, it was eye opening and my care for myself was great and I felt better about everything. I just wish I could of kept that momentum up for myself.
I am in North London, I looked at groups near me but it was really bad and no one my age was there, and no one was Type 1 so I never went back as I felt so out of place!

I've been trying today and my sugars have just said 'Nope' to me all day haha xx

Every day is a challenge, and like @Juicyj says, most people struggle. For example today I have had readings of 9.4, 8.3, 4.6 and 2.7 - hardly brilliant, but also could be so much worse! How about you? As for the meter, you may have to fight your GP, but if it helps you then its worth fighting for. My GP now has an annoying habit of telling me how much my prescription is worth each time I go into the docs, but if you think how much the NHS spends on drinking, smoking and other issues its all relative.

Some groups I have found to be made up of mainly Type 2's, but there might be a specific Type 1 group somewhere, especially if you are willing to travel a bit. When I was younger I went to a great group in St Albans, but I am not sure if a) this is not what you consider to be north london, and b) whether it is still active!

 

[bexblu]

Every day is a challenge, and like @Juicyj says, most people struggle. For example today I have had readings of 9.4, 8.3, 4.6 and 2.7 - hardly brilliant, but also could be so much worse! How about you? As for the meter, you may have to fight your GP, but if it helps you then its worth fighting for. My GP now has an annoying habit of telling me how much my prescription is worth each time I go into the docs, but if you think how much the NHS spends on drinking, smoking and other issues its all relative.

Some groups I have found to be made up of mainly Type 2's, but there might be a specific Type 1 group somewhere, especially if you are willing to travel a bit. When I was younger I went to a great group in St Albans, but I am not sure if a) this is not what you consider to be north london, and b) whether it is still active!

My GP's wife is type 1 so he's really good at allowing me to have what I need and it makes me feel good that he just understands and never questions me. Mine over the weekend were good considering, I had a few that were 15/16 but others that were 5/7 so it's the first time I bought it down that good in a long time! Had a bad episode this weekend with my depression though which has set me back, managed today to pull myself back up again.

I may look into the groups, I just need somewhere that isn't too far from me xx

 

[bexblu]

Hi @bexblu dont be convinced that others are doing so well.. Ok a minority will of finely tuned it so it is intuitive but on the whole many t1's struggle so trust me you are not alone, try not to compare yourself to others, everyone treads a unique path in their management, you need to find your own path that works for you, I am happy to be your diabetes buddy, you are more than welcome to pm me each day and we can do a catch up to see what's working and what isn't, I know this is a lonely life on your own so happy to help

Thank you I really appreciate it! I have a hospital appointment tomorrow and they have been asking me to do a 'no carb day' for some times, but my depression effects my mood and I can't bring myself to do it, and I also am a very fussy eater who has a high carb diet. I know they are going to be so mad at me tomorrow and this makes me fret majorly.. I don't know what I am supposed to say tomorrow without breaking down... xx

 

[azure]

Thank you I really appreciate it! I have a hospital appointment tomorrow and they have been asking me to do a 'no carb day' for some times, but my depression effects my mood and I can't bring myself to do it, and I also am a very fussy eater who has a high carb diet. I know they are going to be so mad at me tomorrow and this makes me fret majorly.. I don't know what I am supposed to say tomorrow without breaking down... xx

If the 'no carb day' was to test your basal, then you can do that in segments so you don't have to not eat for too long.

Just tell them the truth. They're not in charge of you. If they're suggesting things you can't do, tell them and get their help to find an alternative.

The appointment is for your benefit not theirs. X

 

[Juicyj]

Thank you I really appreciate it! I have a hospital appointment tomorrow and they have been asking me to do a 'no carb day' for some times, but my depression effects my mood and I can't bring myself to do it, and I also am a very fussy eater who has a high carb diet. I know they are going to be so mad at me tomorrow and this makes me fret majorly.. I don't know what I am supposed to say tomorrow without breaking down... xx

Hey don't panic about tomorrow, you will be fine, they are there help and support you, if anyone acts in an unsupportive manner then ask them what they would do in your shoes, they shouldn't act unprofessionally so hold your head high Hun. You have nothing to be worried about, tell them your worries and be honest, they can only help if they know everything so don't be afraid to tell them that you need help and good luck for tomorrow

 

[BeccyB]

Thank you I really appreciate it! I have a hospital appointment tomorrow and they have been asking me to do a 'no carb day' for some times, but my depression effects my mood and I can't bring myself to do it, and I also am a very fussy eater who has a high carb diet. I know they are going to be so mad at me tomorrow and this makes me fret majorly.. I don't know what I am supposed to say tomorrow without breaking down... xx

This is probably too late now but 'breaking down' isn't a bad thing. It's far better for them to see how much you are struggling with this emotionally, and see that you really care and want to improve things - they'll hopefully be able to offer you the help you need then. Somebody already mentioned checking if your hospital has a psychologist attached to the diabetes team - I suffer with depression and anxiety too and have recently started seeing one (I moved hospital to where they had one!). It's so much better than seeing a 'normal' mental health team as she understands how it affects my diabetes and vice-versa.

You sound a lot like me not so long ago (and I'm still a work in progress ) - I'm proof that you can turn that corner - I got my hba1c down from 13.8% to 8.9% - still not great but loads better! The turning point for me was finding this forum and seeing that I wasn't alone, and wasn't the only one 'failing' to 'control' my diabetes. And information is power - there is so much on here it can be overwhelming to begin with but making even tiny changes all adds up in the longterm.

It's not an easy or short journey but you can do this, you're taking the first steps by talking honestly about how you're struggling and that's the way to get help

xx

 

[bexblu]

This is probably too late now but 'breaking down' isn't a bad thing. It's far better for them to see how much you are struggling with this emotionally, and see that you really care and want to improve things - they'll hopefully be able to offer you the help you need then. Somebody already mentioned checking if your hospital has a psychologist attached to the diabetes team - I suffer with depression and anxiety too and have recently started seeing one (I moved hospital to where they had one!). It's so much better than seeing a 'normal' mental health team as she understands how it affects my diabetes and vice-versa.

You sound a lot like me not so long ago (and I'm still a work in progress ) - I'm proof that you can turn that corner - I got my hba1c down from 13.8% to 8.9% - still not great but loads better! The turning point for me was finding this forum and seeing that I wasn't alone, and wasn't the only one 'failing' to 'control' my diabetes. And information is power - there is so much on here it can be overwhelming to begin with but making even tiny changes all adds up in the longterm.

It's not an easy or short journey but you can do this, you're taking the first steps by talking honestly about how you're struggling and that's the way to get help

xx

I know, I wish I could tell my head it's not a weakness, that actually breaking down is a good thing and it means I can start again but with not so much of a heavy burden of emotions being carried with me..
I used to see someone in my team when I was young but I didn't like it, I haven't been offered it since, and my hospital is a bit of a pain to get to!!
I may look to see if another hospital may be better for me.

I got my results back and it's gone from 14.9% to 13.6%, which isn't fantastic but it's something and it shows the small efforts I made paid off.. So if I really knuckle down I can get it down further. They set my next goal to be 10% for October 13th.

I wish I could just keep the momentum up with it but I just always seem to stop again...

Appreciate your message, always give me a message if you wanna talk more xx

 

[videoman]

@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

 

[videoman]

Yes it is,but don't let it win. After 55 years of injecting,first twice a day using glass syrnges and then on to 5 a days and testing upto 10 times a day ,it has not stopped me from doing what I like.I do not let it get into my mind,I do not ignore it just keep it in the back of my mind so I can go on living

 

[Dialer]

Hi Bexblu
It has been a few weeks since you posted - has the advice worked and are you having more success with being....human.
I followed your war of attrition and it reminded me of how I was about 30 years ago, I never tested and hadn't got a clue. I told myself I was too busy or I knew how I felt.
I now test 5 or more times a day because I now rise to the challenge of attaining a perfect 7 and then I get a reward (a treat).
I eat what I want and vary the insulin to suit.
I take 2 types of insulin and inject a daily variable amount of 60 to 80 units of 'background' insulin and 50 to 70 units of 'fast' acting insulin. I am 90kg and 1.80m tall with all the bits still attached after a life time with this harpie on my back, so it works for me, but you will find your own perfect balance - honest you will.