A bit fed up

[moorby86]

Hi, I am new to this forum, I used to be embarrassed to even talk about been diabetic and felt alone- I'm a type1 diabetic of 31 years (since I was two) my HBA1C? is usually about 9- I've very recently started to grow up a bit and get more confident with the illness and just wanted to tell my story a bit and to state where I am mentally right now.

So, through child hood my parents were great but at that point I do not feel there was enough education around diabetes, through no fault of any of my family there was a tendency to keep my blood sugar on the high size, often eating foods I probably shouldn't have.

I was very very thin and feel my growth and body didn't grow as well as It should have as a result of my control, as I started dealing with the condition myself into my teens.. I was terrified of it, doctors had told me from a very young age that I risked losing limbs my site etc etc and I felt the weight of this, I drank more than I should probably have drank.. I abused substances throughout my 20s and into my 30s and to be honest I don't regret that as I believe they helped me mentally- I have worked since I was 16 and the lifestyle choices I made didn't really impact on that.

So, to recap, I had always been terrified of the condition into my late 20s, petrified of lows- over the last 6 years I have suffered from depression and put it down to things happening in my life, however lately I have really aknowledged the illness and thought, hey it probably impacts every single aspect of my life, I struggle to concentrate(school was a nightmare) one day I wake up and feel like I can do anything, the next I am an anxious wreck, talking to people is even daunting.

I am now at a point where I am not scared but I want to kick the diabetes ass and gain some control, I have a 4 year old son (non diabetic) and wana get on top of my game for him as much as anything else, any help and advice would be greatly appreciated as I've been feeling very down and hopeless about things of late and angry at the world, many thanks-

 

[Diakat]

Hi @moorby86
That’s a great first post and one that sums up a lot of the stuff that comes with T1.
Running higher sugars is linked to depression and this may be why things have been so tough. But you are ready to get things under control and have a wonderful reason in your son.
Tagging @therower @LooperCat @porl69 and @Jaylee as they know how rough this journey can be

 

[Mike d]

I'd suggest the inspiration to move on rests with image of your son imprinted in your mind.

 

[moorby86]

Hi @moorby86
That’s a great first post and one that sums up a lot of the stuff that comes with T1.
Running higher sugars is linked to depression and this may be why things have been so tough. But you are ready to get things under control and have a wonderful reason in your son.
Tagging @therower @LooperCat @porl69 and @Jaylee as they know how rough this journey can be

Thank you, for the first time ever I rang the hospital last week and went in and spoke to one of the diabetic nurses in person to basically say some of how I was feeling. I'm not sure if anyone of you guys experience the same kind of ignorance and lack of understanding in the work place too. As I usually joke around and aren't very serious (despite the content of these posts) on the face of it I'm fine and I struggle been allowed time off for appointments, I've experienced problems with my eyes over the last 3 years and had lots of laser surgery and work were a little bit funny over this at first until I really stressed the importance- I guess what I'm also trying to get at is that on one hand you have the NHS saying your control has to be better but then on the other hand we've got bills to pay and have to work 40 hours a week so it's not always so easy- my weeks made up of 3 10 hour shifts and then two 5 hour shifts (on both of which I collect my son from school so obviously that occupies me)

Until I had the meeting last week I didn't really know about the fact there is a diabetic psychologist at my hospital so hoping to get an appointment with her too, It amazes me the lack of understanding around the condition.

In regards to the 'difficult' 6 years I had, I was arrested and put in a police cell on 4 occasions (I hadn't actually committed a crime and was cleared on all occasions but I digress), however on the first occasion I told the officers that stress would make my blood sugar go up and could I monitor myself on a regular basis.. this was ignored and as a result I ended up going into DKA and was transferred to the hospital for two days and then released straight back into custody where I again went into DKA and again went back into hospital lol but was very surprised at the polices lack of understanding.

I'm determined to find more motivation and to maybe start the gym (or do something constructive) and have a bit more self confidence, I've now started to talk more and would love to start talking to people (maybe young people who are terrified of the illness like I was) and say don't let the diabetes win and control you, I'm not sure if anyone else feels the same? but I feel that the diabetes means I relate to people a lot more and think about things a lot.

 

[Jaylee]

Hi @moorby86 ,

Welcome to the forum.

In 86, I was probably not the model D either.. Hanging out with with disenfranchised "stoners" made my ramblings seem normal whilst low.. As the only D in the village.

Great parents shielding me from the bleak future painted when diagnosed in 76. But you pick this "vibe" up as you go along.
Eyes, shortly after cleaning up my act. I found I needed a course of anti-VEGF jabs..

I've been lucky regarding my couple of brushes with the law.. They were most accommodating on my condition & was only detained a maximum of 4 hours & released without charge.

Work, they got no choice but to accommodate my appointments. Lol, I flash the letters in "good faith." But my employers seem too embarrassed to even look.

School daze? I recently hooked up with some guys from my year on Facebook. We hadn't seen eachother in 37 years. (Though I bumped into a couple during the mid 90s.) Hooked up with one chap for a drink the other week. None of them knew I was diabetic.

I can't say I was depressed. Just a little "repressed?"

I've learned to stand my ground & protect my interests, thus holding it together for those that share in mutual dependancy.
Regardless

It's good to see you here.

Don't get angry, Find an even keel..

 

[moorby86]

Hi @moorby86 ,
I’m not angry I just want a bit more but I’m not far off at all, I played football every week, I now go to lots of gigs/festivals and In reality it doesn’t stop things just makes it a little harder, enjoyed reading your reply cheers and definitely picking the vibe up- also completely relate to the school comment as very few people had a clue I had it and think I’m joking if I tell them I’ve had it all my life- but frustrated by getting on top of it!
Welcome to the forum.

In 86, I was probably not the model D either.. Hanging out with with disenfranchised "stoners" made my ramblings seem normal whilst low.. As the only D in the village.

Great parents shielding me from the bleak future painted when diagnosed in 76. But you pick this "vibe" up as you go along.
Eyes, shortly after cleaning up my act. I found I needed a course of anti-VEGF jabs..

I've been lucky regarding my couple of brushes with the law.. They were most accommodating on my condition & was only detained a maximum of 4 hours & released without charge.

Work, they got no choice but to accommodate my appointments. Lol, I flash the letters in "good faith." But my employers seem too embarrassed to even look.

School daze? I recently hooked up with some guys from my year on Facebook. We hadn't seen eachother in 37 years. (Though I bumped into a couple during the mid 90s.) Hooked up with one chap for a drink the other week. None of them knew I was diabetic.

I can't say I was depressed. Just a little "repressed?"

I've learned to stand my ground & protect my interests, thus holding it together for those that share in mutual dependancy.
Regardless

It's good to see you here.

Don't get angry, Find an even keel..

 

[Robin233]

There is a correlation between diabetes and depression. According to the study, the probability of depression in adult diabetic patients is in the range of 9 to 27. Some experts believe that the main cause of depression in diabetics is excessive dietary control and economic burden as well as complications of diabetes itself.

 

[moorby86]

There is a correlation between diabetes and depression. According to the study, the probability of depression in adult diabetic patients is in the range of 9 to 27. Some experts believe that the main cause of depression in diabetics is excessive dietary control and economic burden as well as complications of diabetes itself.

There is a correlation between diabetes and depression. According to the study, the probability of depression in adult diabetic patients is in the range of 9 to 27. Some experts believe that the main cause of depression in diabetics is excessive dietary control and economic burden as well as complications of diabetes itself.

thanks, I am only just starting to think about how diabetes does have an impact on some of the choices I’ve made in the past. I’ve read a lot about long term medical conditions causing depression and I guess it figures. I got into a lot of debt during the difficult periods in my 20s and again feel my diabetes played a bigger part than I had at the time realised- I can look at the past now without feeling down but I’m really keen on making sure I have more control going forwards- will definitely read posts on the forum for help

 

[porl69]

Hi @moorby86 your post reminds me of a younger me! I was diagnosed in 1971 aged 5. NO education at all in diabetes management. BG tests were done at the 6 monthly clinic. My mother was very strict with my diet....NO sugar, chocolate at Easter and Xmas only. Then went to high school and the rebel in me came out. Zero control at all for a very long time. Lost the sight in my left eye 20 odd years ago BUT that didn't stop the abuse of my diabetes! It was around 5 years ago with the diagnosis of stage 4CKD that kicked me into gear. I am now in control of my diabetes, thanks to a diabetes team that actually care for me AND an insulin pump (check my signature for HBA1Cs)
Your 4 year old is your major factor in keeping things on an even keel and kicking T1Ds ****

 

[LooperCat]

Morning @moorby86 and welcome - I’ve been just where you are, and it’s utterly miserable. Practically disabled by how you feel, leading to understandable depression, leading to letting your levels skyrocket, which makes you feel ill and more prone to depression...
It’s a vicious circle. But you’ve made a brave and brilliant step out of that hole by reaching out for help here. I’ve been where you are, and while I have days when I really resent what happened to my pancreas (in my case a nasty dose of gastric flu made my immune system nuke the beta cells to clobber the virus lurking there), mostly I’ve reached the stage of just shrugging it off and cracking on. I’d avoided the diabetes online community and national organisations for years, didn’t want to talk about it or even really accept that I’d got it. Let alone read a quarterly magazine about it.

Long story short, I was diagnosed in 98 at the age of 23, part way through my biochemistry PhD and I didn’t cope with the diagnosis well. Mixed insulin meant rigid mealtimes, and I was living in catered halls of residence so had no idea how much to eat of the food in front of me. Combined with irregular lab hours and I was hypoing all over the place. Ended up having to give up two thirds of the way through, which made me resent it more. Got a job as a sales rep for the SE of England, which meant I managed my own days and that was good for a few years. Had my son, and was a star patient, with a wonderful HbA1c of about 42 the whole time (mainly because I was too sick to eat much) and delivered a perfect 7lb4oz baby boy (now 16 and learning to fly). Then it all went seriously downhill on the diabetes front for years. I just couldn’t cope with the constant fingerpricks. I was working as a silversmith, and painful fingertips combined with metal dust getting in the little holes made me test less and less; I’d inject my Lantus but not bother with my Novorapid and still eat what I wanted. I didn’t know what effect that was having because I wasn’t looking at my levels. Just did the bare minimum to keep myself alive. I’d joined a slimming club to lose weight and was losing pretty effortlessly - because my sugars were catastrophically high. But I was getting so many compliments about my new figure, and I carried on. Until I landed myself in intensive care for a week, I almost died. Even that wasn’t enough to get to grips with sorting out my levels and taking charge. I felt terrible, utterly miserable and couldn’t do anything much. But I was thin, right? Cut to a couple of years ago, and I got out of the bath one day to see my toes bent right back under my foot and I didn’t feel a thing. That really freaked me out and I started thinking seriously about my potential future issues. I’d just been prescribed a Libre and was beginning to see the effect of food and insulin in real time so was trying a bit harder to control things, but they were all over the place. The very next day I made a carb counting error (I read the raw instead of the cooked weight of a pack of spaghetti) and massively overdosed on insulin - ended up having paramedics round. Joined the forum the next day seeking help. Although it was mostly type twos following it, I decided to try dropping the amount of carbs I was eating - I realised (that for me) smaller amounts of carbs meant smaller doses, and hopefully smaller swings in my levels. That doesn’t suit everybody though. I’ve since got a pump and hooked it up to my Libre via a couple of unofficial gadgets to create an artificial pancreas system which helps keep me relatively stable without too much input. Tech plus a low carb diet has helped me get to grips with my own personal T1 and I feel great for the first time in years. I have put on a fair bit of the weight I’d lost, which is my next challenge.

Tl;dr version - I’ve been where you are; there is a way out, find your motivation and then something that works to keep you on track. And keep talking!

 

[moorby86]

Morning @moorby86 and welcome - I’ve been just where you are, and it’s utterly miserable. Practically disabled by how you feel, leading to understandable depression, leading to letting your levels skyrocket, which makes you feel ill and more prone to depression...
It’s a vicious circle. But you’ve made a brave and brilliant step out of that hole by reaching out for help here. I’ve been where you are, and while I have days when I really resent what happened to my pancreas (in my case a nasty dose of gastric flu made my immune system nuke the beta cells to clobber the virus lurking there), mostly I’ve reached the stage of just shrugging it off and cracking on. I’d avoided the diabetes online community and national organisations for years, didn’t want to talk about it or even really accept that I’d got it. Let alone read a quarterly magazine about it.

Long story short, I was diagnosed in 98 at the age of 23, part way through my biochemistry PhD and I didn’t cope with the diagnosis well. Mixed insulin meant rigid mealtimes, and I was living in catered halls of residence so had no idea how much to eat of the food in front of me. Combined with irregular lab hours and I was hypoing all over the place. Ended up having to give up two thirds of the way through, which made me resent it more. Got a job as a sales rep for the SE of England, which meant I managed my own days and that was good for a few years. Had my son, and was a star patient, with a wonderful HbA1c of about 42 the whole time (mainly because I was too sick to eat much) and delivered a perfect 7lb4oz baby boy (now 16 and learning to fly). Then it all went seriously downhill on the diabetes front for years. I just couldn’t cope with the constant fingerpricks. I was working as a silversmith, and painful fingertips combined with metal dust getting in the little holes made me test less and less; I’d inject my Lantus but not bother with my Novorapid and still eat what I wanted. I didn’t know what effect that was having because I wasn’t looking at my levels. Just did the bare minimum to keep myself alive. I’d joined a slimming club to lose weight and was losing pretty effortlessly - because my sugars were catastrophically high. But I was getting so many compliments about my new figure, and I carried on. Until I landed myself in intensive care for a week, I almost died. Even that wasn’t enough to get to grips with sorting out my levels and taking charge. I felt terrible, utterly miserable and couldn’t do anything much. But I was thin, right? Cut to a couple of years ago, and I got out of the bath one day to see my toes bent right back under my foot and I didn’t feel a thing. That really freaked me out and I started thinking seriously about my potential future issues. I’d just been prescribed a Libre and was beginning to see the effect of food and insulin in real time so was trying a bit harder to control things, but they were all over the place. The very next day I made a carb counting error (I read the raw instead of the cooked weight of a pack of spaghetti) and massively overdosed on insulin - ended up having paramedics round. Joined the forum the next day seeking help. Although it was mostly type twos following it, I decided to try dropping the amount of carbs I was eating - I realised (that for me) smaller amounts of carbs meant smaller doses, and hopefully smaller swings in my levels. That doesn’t suit everybody though. I’ve since got a pump and hooked it up to my Libre via a couple of unofficial gadgets to create an artificial pancreas system which helps keep me relatively stable without too much input. Tech plus a low carb diet has helped me get to grips with my own personal T1 and I feel great for the first time in years. I have put on a fair bit of the weight I’d lost, which is my next challenge.

Tl;dr version - I’ve been where you are; there is a way out, find your motivation and then something that works to keep you on track. And keep talking!

Hi, thanks for the post- I found lots of what you said helpful and relatable and very familiar. I don't feel as though I'm a million miles away from better control, i guess on average I run at sort of 10/11 but realise that's too high and want to better myself- I completely relate to your comment about not having novorapid however I used to not have lantua and just rely on novorapid (I now use Fiasp and much prefer it) so I'd basically wake up very high in the night and need more novorapid, seems absolutely crazy looking back but I think I was just in a routine and couldn't be bothered at that point!

I guess having it 31 years plays a part in the frustration but I'm now at a point where I admit I've got the illness and want to better my control, the hardest part is the motivation and fitting it around my life (which is pretty busy) I've been using libre fo months and love it (although I've managed to knock quite a few off) and I have a tendency to react too quickly if it's slightly high where the diabetes nurse has said to not be so quick to give an adjustment dose. I've also recently started injecting in my stomach when I always refused to! so feel like I'm doing a bit of growing up, I've never felt sorry for myself and as I have said I don't ever talk about it because I feel a bit lonely with it but this seems a good place to talk thanks!

 

[LooperCat]

@moorby86 - come and join in on the “Type 1 Stars” thread here on the forum

 

[moorby86]

Hi @moorby86 your post reminds me of a younger me! I was diagnosed in 1971 aged 5. NO education at all in diabetes management. BG tests were done at the 6 monthly clinic. My mother was very strict with my diet....NO sugar, chocolate at Easter and Xmas only. Then went to high school and the rebel in me came out. Zero control at all for a very long time. Lost the sight in my left eye 20 odd years ago BUT that didn't stop the abuse of my diabetes! It was around 5 years ago with the diagnosis of stage 4CKD that kicked me into gear. I am now in control of my diabetes, thanks to a diabetes team that actually care for me AND an insulin pump (check my signature for HBA1Cs)
Your 4 year old is your major factor in keeping things on an even keel and kicking T1Ds ****

Yes lots of similarities with most posters by the sounds of it, I love the libre but I've never been too keen on the idea of a pump but I do usually come round to things so who knows. Have been using Fiasp for aa year or so and really like it as it fits my lifestyle, another thing I find is that (this has always been the case) I have a huge appetite, I'm about 5 ft9 and weigh 11.6 stone and that's the most I've ever weighed so not really big, sounds like you've got on top of things and I can take inspiration from your journey thanks.

 

[moorby86]

Yes lots of similarities with most posters by the sounds of it, I love the libre but I've never been too keen on the idea of a pump but I do usually come round to things so who knows. Have been using Fiasp for aa year or so and really like it as it fits my lifestyle, another thing I find is that (this has always been the case) I have a huge appetite, I'm about 5 ft9 and weigh 11.6 stone and that's the most I've ever weighed so not really big, sounds like you've got on top of things and I can take inspiration from your journey thanks.

Also- for many years I was very frustrated at the nhs and how I always found they were very judgemental (telling me to sort my control out but giving no real advise on how to do so) they also used to suggest changing insulin all the time and in the end I just stopped going to the hospital for years (probably stupidly) but when I eventually went back my HBA1C was better than It was when I'd been going to the hospital, by a considerable amount. However I would just like to say how far I think the nurses etc have come and seem lots more knowledgeable less judgemental etc than my experience as a kid in the 90s/00s. I still think the GP's aren't very understanding but I guess they don't deal with it as much, I also think it's excellent that apparently now whole families are put into counselling when a child is diagnosed, to better understand the condition!

 

[porl69]

Also- for many years I was very frustrated at the nhs and how I always found they were very judgemental (telling me to sort my control out but giving no real advise on how to do so) they also used to suggest changing insulin all the time and in the end I just stopped going to the hospital for years (probably stupidly) but when I eventually went back my HBA1C was better than It was when I'd been going to the hospital, by a considerable amount. However I would just like to say how far I think the nurses etc have come and seem lots more knowledgeable less judgemental etc than my experience as a kid in the 90s/00s. I still think the GP's aren't very understanding but I guess they don't deal with it as much, I also think it's excellent that apparently now whole families are put into counselling when a child is diagnosed, to better understand the condition!

Yeah definitely agree with you on the nurses. My pump DSN is amazing, she was phoning me very regular when I 1st started on the pump just to make sure everything was ok

 

[annliggins]

Do you know that i learned most things myself ? As good as i thought my DNS was she didnt teach me what i really needed to know. 1) Basal ..get that right and youre on it 2) Timing ... absolutley crucial 3) dont set your low too low on your meter cut yourself a bit of slack you will get used to seeing and managing lowish numbers like 6 ..i like 7.5 -9 but im working on it x

 

[moorby86]

Do you know that i learned most things myself ? As good as i thought my DNS was she didnt teach me what i really needed to know. 1) Basal ..get that right and youre on it 2) Timing ... absolutley crucial 3) dont set your low too low on your meter cut yourself a bit of slack you will get used to seeing and managing lowish numbers like 6 ..i like 7.5 -9 but im working on it x

My bloods have got much better over recent years but then I’ll have a day when without real explanation my readings sky rocket, although that’s maybe stress etc- I may have a look into a pump if that would improve my readings but I think that’s a conversation to have with the doctor- also I couldn’t afford it unless i got it through the nhs- the libre has definitely helped but I know I can do better!