# I need help



## EmmaL76 (Feb 23, 2022)

Not sure how much longer I can do this guys. I feel like I have no support. I know my diabetes isn’t straight forward but I’ve tried everything to get help. My urgent review was supposed to happen over a year ago, my endo has left and there is currently no replacement for him and when he does get replaced the waiting list is huge. My doctors won’t help because I’m under the hospital team and private endos won’t take over my care. My DN is lovely but her hands are tied. She has dictated 3 letters over the last year to the other hospital she works at and has no response. She agrees I shouldn’t  be on insulin as my production is good, but no other medication can be prescribed without a consultant. My BGs have been good, eating the same foods day in day out virtually zero carbs but weight is still dropping. I am exhausted to the point where I can’t carry out day to day tasks any longer, I’ve now been told to cut out fats due to high cholesterol. Over the last few weeks my sugars have been creeping up so all I can do now is eat even less. My private endo recommended a few drugs and testing for MODY etc as I’ve had blood sugars problems for 20 years coming and going, but he couldn’t action any of this for me. I finally got on the scales this morning and I’m 113 lbs. I’m 5ft 7. People think I’m ok, and I’m just getting on with it, but I’m not ok I’m struggling… I feel desperate and the thought of living like this forever takes me to a place in my head that I don’t want to be. I know others on here have found a diet that works for them and they feel great but this isn’t me, I eat less than 20g of carbs a day and I can’t get up the stairs without having to lie down. I know there is nothing anybody can do, I just needed to tell somebody how I’m feeling. Sorry to be doom and gloom, I’m usually quite cheerful on here but it’s time to admit that I’m not coping


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## Inka (Feb 23, 2022)

Sending you a massive hug @EmmaL76 xxx

Please don’t let all this grind you down. It’s crap and its not worth giving in to. You can get through this. It might be a hard path, but you can do it - I know you can.

Do you know what other drugs they were referring to? Why can’t your GP try some of those on a trial basis? 

You have anaemia, right? Is that being sorted and is that part of the cause of you not being able to get upstairs? I’m going to say it - and I’ve said it before - I don’t believe you have Type 2, I think you have a slow-onset form of Type 1. Wasn’t your C Peptide lower ie declining? I see nothing to suggest you have insulin resistance. Pardon my bluntness, but I would bet that if you ate properly and took small amounts of insulin, you’d feel an awful lot better physically, and that would help you mentally too. I say that out of massive concern, not to lecture you. xxx


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## rebrascora (Feb 23, 2022)

Oh Emma! I am so sorry you have hit this brick wall again. You are right, you can't keep on like this. (((HUGS)))

I'm afraid the answer is to eat more carbs. If your BG levels go up then they will have to prescribe something. It is totally unreasonable to expect you to try to manage this through diet alone when you have no body stores to maintain you. You really have given it everything to try to manage it like this but this is not sustainable.

Have you contacted the Diabetes Clinic helpline? I am guessing the only reason your nurse cannot prescribe medication is because you are under the hospital team. I appreciate you say there is no consultant but there will be DSNs.

If your insulin production is really OK then it should be able to cope with more carbs than you are eating, so at least double your intake. If your levels go through the roof (and I mean mid 20s then they will need to do something or I imagine you still have some insulin in the fridge that you can use, which I know you have issues with but if it drops your levels then that tells you that this talk of insulin resistance is rubbish and you need to be on insulin. Consider it a self diagnostic experiment. 

In your situation I would gradually eat more carbs until my levels got to mid teens (if you are not comfortable with letting it get that high, then maybe 10-12 and then when it is steady at that level for an hor or more, inject a unit of insulin and test every half hour to see what happens. Going up to mid teens is not going to do you any major damage. It happens to us Type 1s often enough .

Really feel for you but think you are making your diagnosis harder to understand by trying too hard. You might have to completely break your glucose regulation system in order to get it fixed, rather than try to help it limp along as you are doing now.


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## Inka (Feb 23, 2022)

Just to add that I am what my consultant called an “atypical Type 1”. My diagnosis was atypical, my progression was atypical, my blood sugar results were atypical - ie they’d fluctuate massively. If I ate like you, I could probably have confused the doctors and consultants for a few years more, but fortunately I ate normally (normal amounts of carbs) so I got the insulin I needed.

I had an eating disorder - quite a severe one - and I’m very sensitive to it in others because I used so many of the strategies myself. I don’t want to write more here because a) it’s personal, but b) more than that, I don’t want to go on and on and upset you. As I think @rebrascora is partly alluding to, you’re delaying your own treatment by starving yourself unnecessarily. I know I’ve mentioned this before and i only mention it again now not to upset you but because you’re feeling so desperate. Eat properly - that’s the answer. Eat, take insulin and get on with your life. Eating disorders mess with your head and they mess with your head so much you can’t even see how much they’re affecting your judgement. But once you start climbing out of that dark hole, things get easier each step you take.

The light is closer than you think. xx


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## EmmaL76 (Feb 23, 2022)

Thanks so much to both of you. It’s so comforting for me when you reply. I will try and cover all the points in one post. The drugs were 2 with funny names that he said were hormonal but worth a shot, and the other was gliclazide. He sent a letter to my doctors requesting a trial and they sent me a text message saying they couldn’t do this without permission from my team. My iron came back low this time but not anaemia but my ferritin is always very very low so have started on proper iron tablets (not the low dose I usually take) as my chest get very tight when I go super low. So I’m hoping this helps with the exhaustion. I do honestly know that what I’m doing is wrong but the demons from my past are also still there, I’ve punished myself with food for a lot of years and having to basically look at a BG score of how good or bad I’ve been adds a whole new layer. Yes my production of insulin went from 3.6 which they said was high and is now 1.06 which is still satisfactory but yhe DNs said this more or less ruled out type 1 and the reason it was so high to start with was because of resistance now I’m not eating any carbs really I have less circulating insulin. The message from her was to keep doing what I’m doing.


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## grovesy (Feb 23, 2022)

Have you tried ringing the Diabetes UK helpline to see if they can give you pointers of what to do?


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## rebrascora (Feb 23, 2022)

EmmaL76 said:


> The message from her was to keep doing what I’m doing.


What you are doing is absolutely not sustainable and that is why you are asking for help and I am sure if your nurse knew the full circumstances she would not be suggesting that.

Were your C-peptide tests urine or blood samples? My feeling is that people without enough knowledge of the full facts are interpreting results and have made comments on them which are not helpful. 
Please increase your carb intake and if necessary, cautiously use the insulin you have when your levels go too high.


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## Leadinglights (Feb 23, 2022)

It is a difficult position to be in when you feel there is nobody in the medical profession that you have access to who has the expertise to know what is going on. 
I know not good but sometimes you have to create a crisis to get some action.
I have just found out about a friend who was diagnosed as Type 2 a year ago and was told to reduce her carbs, she was of normal weight if not already slim but in cutting carbs she started to lose weigh and strength and energy, but with no support or re-testing until now.  She has now seen a dietician and had more blood tests but has been put on metformin and told to have 8 portions of carbs per day.
I'm not sure how that will help her blood glucose levels but hopefully it will stabilise her weight and it will be a wait and see on the blood results.
The lack of support from the hospital may be worth a complaint through the complaints procedure as this has been going on some time.


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## Inka (Feb 23, 2022)

*I’ve punished myself with food for a lot of years and having to basically look at a BG score of how good or bad I’ve been adds a whole new layer*

Ah, but the BG is NOT a judgement on your food intake. I _absolutely_ know where you’re coming from @EmmaL76 but if I didn’t eat anything at all and didn’t take my insulin, my BG would be high. Would that be a judgement on my diet? No, you know it wouldn’t be - of course you do. You are no different. A higher than usual blood sugar is NOT proof you’re failing at the old starving yourself business…

I agree with @rebrascora Your DN might be lovely but she’s doing you no favours and facilitating your coping methods and self-punishment. That is not good. I think you know that. You’re looking for answers (consciously or subconsciously) that allow you to continue punishing yourself. Emma, you’re a kind, clever and compassionate person and you do NOT need punishing. It’s upsetting to read that.

When I was first diagnosed, my blood sugar was almost 30. Then at some point it came down a lot (with no insulin drip). Much confusion. A very long story, but the two important facts are I AM Type 1, and if I’d listened to some of my doctors then I’d be dead. One actually told me to stop my insulin as I didn’t have diabetes! Medical staff aren’t gods and they can be wrong.

The bottom line is you’re starving yourself. If I was you, I’d set out a regular diet with very similar meals each day (more consistency, less mental stress about choice) and eat it for a few days, measuring my blood sugar. I’d then, meal by meal, add a tiny amount of fact-acting insulin where needed. That way you eat properly and your BG will be ok. You’re going to mention hypos, I know you are - you can catch any drops. All you do is eat a little to put your BG up. You were taking too much insulin when you took it before and/or not eating properly. Hypos don’t suggest insulin resistance.


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## EmmaL76 (Feb 23, 2022)

Thankyou so much everybody for you advice and understanding. I have a dinner party this afternoon (nightmare scenario for me at the minute) I will have a proper read and digest later and decide how I’m going to pull myself together. I’m feeling a little better for all your kind words and I’ve made a mental note to not post before 9am as that’s seems to always be the worst time for me xx


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## EmmaL76 (Feb 23, 2022)

By the way, my c peptide was urine, I’ve never had a blood one as apparently my team only do urine, also I fear I did not do it correctly as the tube was posted to me with no instructions and my DN just told me to get my sugars to over 8 do the sample and take it to my doctors. It was only later I found out from guys on here that you are supposed to wait 2 hours after eating


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## rebrascora (Feb 23, 2022)

EmmaL76 said:


> Thankyou so much everybody for you advice and understanding. I have a dinner party this afternoon (nightmare scenario for me at the minute) I will have a proper read and digest later and decide how I’m going to pull myself together. *I’m feeling a little better for all your kind words and I’ve made a mental note to not post before 9am as that’s seems to always be the worst time for me* xx


No, you need to post when you feel worst, not when you are feeling a bit better. Keeping it to yourself is not good. Sharing how you feel is important, even if we can't always find the right words to say to help you. Just opening up about it and being honest is part of the process of dealing with it. Keeping a lid on it just keeps the pressure building and you trying to hide from it or pretend everything is OK when it absolutely isn't. 
Hope your dinner party goes smoothly and please treat yourself to some carbs. 



EmmaL76 said:


> By the way, my c peptide was urine, I’ve never had a blood one as apparently my team only do urine, also I fear I did not do it correctly as the tube was posted to me with no instructions and my DN just told me to get my sugars to over 8 do the sample and take it to my doctors. It was only later I found out from guys on here that you are supposed to wait 2 hours after eating


I did think that was the case with your C-peptide tests. I believe this is why there is so much confusion with your results and diagnosis. Your GAD was positive wasn't it?


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## EmmaL76 (Feb 23, 2022)

rebrascora said:


> No, you need to post when you feel worst, not when you are feeling a bit better. Keeping it to yourself is not good. Sharing how you feel is important, even if we can't always find the right words to say to help you. Just opening up about it and being honest is part of the process of dealing with it. Keeping a lid on it just keeps the pressure building and you trying to hide from it or pretend everything is OK when it absolutely isn't.
> Hope your dinner party goes smoothly and please treat yourself to some carbs.
> 
> 
> I did think that was the case with your C-peptide tests. I believe this is why there is so much confusion with your results and diagnosis. Your GAD was positive wasn't it?


Yes I suppose your right, I think it’s because sometimes when I get up in the morning the thought of another day is so overwhelming. Maybe it’s the going out thing as I don’t do that so much these days. Yes my gad was positive xx


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## ColinUK (Feb 23, 2022)

Bit of a left field suggestion this but have you considered using other things to help jump the queue and get the help you need? 
I’m thinking that you take the mental health strain of the diabetes and go to A&E. You ask to see the duty psychiatrist because you can’t cope with everything and you get it all out in the open. 
You’ll likely be given mental health support as well as bumped up the list for diabetes/endo care and support at the same time.


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## Elenka_HM (Feb 23, 2022)

Hi Emma, sorry that you are going through this bad situation. It's absolutely normal that you are not feeling very cheerful giving that you are exhausted and not getting the treatment that you need. I think it was a good idea for you to open up here as you are getting some ideas and, more important, emotional support. I agree with @rebrascora that you don't need to wait until you are feeling better, when you are low is probably when you more need to reach out. 

People who have replied before know way more than me about diabetes, disordered eating and the healthcare system, so I'm not getting in there. But I was going to suggest you may try to get some support for the mental health side of all this. I was thinking something like calling a helpline to start with, thought I @ColinUK  has given a more "hardcore" approach. It could be worth a shot!


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## sarahb83 (Feb 23, 2022)

EmmaL76 said:


> Not sure how much longer I can do this guys. I feel like I have no support. I know my diabetes isn’t straight forward but I’ve tried everything to get help. My urgent review was supposed to happen over a year ago, my endo has left and there is currently no replacement for him and when he does get replaced the waiting list is huge. My doctors won’t help because I’m under the hospital team and private endos won’t take over my care. My DN is lovely but her hands are tied. She has dictated 3 letters over the last year to the other hospital she works at and has no response. She agrees I shouldn’t  be on insulin as my production is good, but no other medication can be prescribed without a consultant. My BGs have been good, eating the same foods day in day out virtually zero carbs but weight is still dropping. I am exhausted to the point where I can’t carry out day to day tasks any longer, I’ve now been told to cut out fats due to high cholesterol. Over the last few weeks my sugars have been creeping up so all I can do now is eat even less. My private endo recommended a few drugs and testing for MODY etc as I’ve had blood sugars problems for 20 years coming and going, but he couldn’t action any of this for me. I finally got on the scales this morning and I’m 113 lbs. I’m 5ft 7. People think I’m ok, and I’m just getting on with it, but I’m not ok I’m struggling… I feel desperate and the thought of living like this forever takes me to a place in my head that I don’t want to be. I know others on here have found a diet that works for them and they feel great but this isn’t me, I eat less than 20g of carbs a day and I can’t get up the stairs without having to lie down. I know there is nothing anybody can do, I just needed to tell somebody how I’m feeling. Sorry to be doom and gloom, I’m usually quite cheerful on here but it’s time to admit that I’m not copin


Oh Emma I just wanted to send hugs, you’ve picked me up a couple of times when I’ve been struggling and I just wanted to let you know I’m here x


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## AndBreathe (Feb 23, 2022)

@EmmaL76 , I was about to suggest something similar to @ColinUK .  I might not be suggesting A&E, but if you are "cared for" (Yes, I know.....) by your clinic, every clinic has a psychologist attached to it who deals with the psychological burden of diabetes, plus other "stuff".  I would be calling up to ask for an appointment with them.

Perhaps before any of that it could be helpful to research other Endos working at your clinic, and seek them out privately?  If you do that, they can write to themselves (Honestly, I kid you not!) and your GP and get things moving.  I did exactly that for my thyroid challenges when the initial chap I saw wasn't interested in anything less than typical.  Me? I'm allergic to typical!

If that doesn't help, then your GP, perhaps.

Vis-a-vis your meals, my suggestion would be to forget your lipids for now and as well as eating plenty nutrition dense protein, have fats.  Fatty fish, fattier cuts f meat, avocado, cheese, cream.  Whatever really.

From memory your lipids aren't high, and if you are losing weight this could be impacting.  Many find when losing weight their lipids initially rise, then settle, but if you are getting to low weight ranges it might still be impacting.

Right now, it strikes me you are probably at more risk of mental and physical harm, by starvation that damage due to marginal lipid levels or slightly elevated blood glucose numbers.

Another approach could be to eat whatever you like.  If your blood numbers shoot up, it may get you some action.
I don't envy you at all.  You need support and you need it asap.

(On an aside, I'd be interested to know why your private endo wouldn't follow through the investigations he felt would be useful.)


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## EmmaL76 (Feb 23, 2022)

Leadinglights said:


> It is a difficult position to be in when you feel there is nobody in the medical profession that you have access to who has the expertise to know what is going on.
> I know not good but sometimes you have to create a crisis to get some action.
> I have just found out about a friend who was diagnosed as Type 2 a year ago and was told to reduce her carbs, she was of normal weight if not already slim but in cutting carbs she started to lose weigh and strength and energy, but with no support or re-testing until now.  She has now seen a dietician and had more blood tests but has been put on metformin and told to have 8 portions of carbs per day.
> I'm not sure how that will help her blood glucose levels but hopefully it will stabilise her weight and it will be a wait and see on the blood results.
> The lack of support from the hospital may be worth a complaint through the complaints procedure as this has been going on some time.


Pass my best wishes on to your friend for me… it’s a horrible situation to be in, if she were to ever come on here I would love to talk to her. Hope her test results give her a better way forward xx


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## EmmaL76 (Feb 23, 2022)

AndBreathe said:


> @EmmaL76 , I was about to suggest something similar to @ColinUK .  I might not be suggesting A&E, but if you are "cared for" (Yes, I know.....) by your clinic, every clinic has a psychologist attached to it who deals with the psychological burden of diabetes, plus other "stuff".  I would be calling up to ask for an appointment with them.
> 
> Perhaps before any of that it could be helpful to research other Endos working at your clinic, and seek them out privately?  If you do that, they can write to themselves (Honestly, I kid you not!) and your GP and get things moving.  I did exactly that for my thyroid challenges when the initial chap I saw wasn't interested in anything less than typical.  Me? I'm allergic to typical!
> 
> ...


Thankyou so much for the advice, I did have a full blown break down around feb last year and was put on the list for mental health services but as of yet I’ve heard nothing. I have sought out my own treatment but stopped that a while back as she just wanted to talk about my childhood and home life when I specifically wanted help with my health anxiety. My lipids are not too bad, 5.4 for total but all others were really good. So you might be right about putting that on the back burner for now xx


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## EmmaL76 (Feb 23, 2022)

sarahb83 said:


> Oh Emma I just wanted to send hugs, you’ve picked me up a couple of times when I’ve been struggling and I just wanted to let you know I’m here x


Ahh Thankyou so much, I’m overwhelmed by the responses I have received today xx


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## EmmaL76 (Feb 23, 2022)

Benny G said:


> .


Thanks so much for the full stop benny, I’m really touched


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## EmmaL76 (Feb 23, 2022)

Elenka_HM said:


> Hi Emma, sorry that you are going through this bad situation. It's absolutely normal that you are not feeling very cheerful giving that you are exhausted and not getting the treatment that you need. I think it was a good idea for you to open up here as you are getting some ideas and, more important, emotional support. I agree with @rebrascora that you don't need to wait until you are feeling better, when you are low is probably when you more need to reach out.
> 
> People who have replied before know way more than me about diabetes, disordered eating and the healthcare system, so I'm not getting in there. But I was going to suggest you may try to get some support for the mental health side of all this. I was thinking something like calling a helpline to start with, thought I @ColinUK  has given a more "hardcore" approach. It could be worth a shot!


Thankyou for your lovely reply, I’m just so tired of it I think I just got to a point where I couldn’t take anymore. I do need help, I feel like I try but never get anywhere xx


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## EmmaL76 (Feb 23, 2022)

ColinUK said:


> Bit of a left field suggestion this but have you considered using other things to help jump the queue and get the help you need?
> I’m thinking that you take the mental health strain of the diabetes and go to A&E. You ask to see the duty psychiatrist because you can’t cope with everything and you get it all out in the open.
> You’ll likely be given mental health support as well as bumped up the list for diabetes/endo care and support at the same time.


Thing is I always tell myself that I should be able to cope, almost feels weak. Which I know is stupid


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## Lily123 (Feb 23, 2022)

I don’t have any advice but it’s awful what you’re going though Emma (((Hugs)))


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## Lily123 (Feb 23, 2022)

EmmaL76 said:


> Thing is I always tell myself that I should be able to cope, almost feels weak. Which I know is stupid


You’re definitely not weak!


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## Elenka_HM (Feb 23, 2022)

EmmaL76 said:


> Thankyou for your lovely reply, I’m just so tired of it I think I just got to a point where I couldn’t take anymore. I do need help, I feel like I try but never get anywhere xx


Aw, it's a shame you are not getting the mental health support either  I had the impression that there were more resources for this in the UK than in my country, at least society seems to take it more seriously. The Spanish government created a media campaign to support mental health with the motto "Ask for help" and it got lots of criticism because the waiting lists for therapy in our NHS are so long and people don't get enough sessions. Twitter was full of memes in the lines of:
Gov: Ask for help 
People: help please!
Gov: nope. 

I hope you find this help you need someway. In the meantime try not to bottle all your negative emotions, talk to loved ones and use the forum. I always feel better when I let things out of my brain.


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## Lucyr (Feb 23, 2022)

I’d honestly do the same as others have suggested, and eat more carbs then if you see high bgs, either show those to your team and they’ll see you need to try more medications, or if you have insulin then use it and show them why you’re using it.


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## EmmaL76 (Feb 23, 2022)

Lucyr said:


> I’d honestly do the same as others have suggested, and eat more carbs then if you see high bgs, either show those to your team and they’ll see you need to try more medications, or if you have insulin then use it and show them why you’re using it.


I know what your saying makes total sense. It just seems like it’s something I’m incapable of doing. I had a very small bowl of cereal the other week, I told myself that my sugars would be fine and when they wernt I ended up on the treadmill, which I think actually made it worse. It’s like I have this overwhelming fear of them going high. When I was first diagnosed the highest reading I got was 28 but I got more and more obsessed, a 10 now would upset me far more than that 28 did back then.


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## Lucyr (Feb 23, 2022)

I understand you don’t want them to go above 10, but your team aren’t going to take action unless they see you are having high bgs, or unless you can communicate how difficult it is for you. If you can’t use insulin or see higher bgs, then you need to go with the latter. Could you write key points down and communicate it that way?


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## Andy777 (Feb 23, 2022)

EmmaL76 said:


> Ahh Thankyou so much, I’m overwhelmed by the responses I have received today xx


I bet you are feeling so much better tonight after taking that first step towards help. Well done! You have my admiration. Now we want to hear that you have heeded the advice.
Take care. Be good to yourself.


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## Mrs Mimoo (Feb 23, 2022)

I hope you are not too sad. If you have a little money you could get a private diagnosis? I had to do that to get my tachycardia diagnosed. Now back in NHS but it was worth £300 to go to spire hospital and get a proper doctoring.


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## Inka (Feb 23, 2022)

EmmaL76 said:


> I know what your saying makes total sense. It just seems like it’s something I’m incapable of doing. I had a very small bowl of cereal the other week, I told myself that my sugars would be fine and when they wernt I ended up on the treadmill, which I think actually made it worse. It’s like I have this overwhelming fear of them going high. When I was first diagnosed the highest reading I got was 28 but I got more and more obsessed, a 10 now would upset me far more than that 28 did back then.



I know you’re finding it hard *hugs* But what you’re doing (albeit for different reasons) is delaying your treatment (and correct diagnosis IMO) and it’s what my friend with LADA did and it did him no favours at all. His treatment was delayed a long time, and even when it was obvious he needed insulin, it was _still_ delayed because they’d look back at his ok blood sugars from earlier and that stopped them prescribing the insulin even though his blood sugar was currently high. On and on, it went. He developed retinopathy completely unnecessarily, and it caused him a lot of stress.

People without diabetes can have a blood sugar of 10 sometimes. You only have to eat the normal meals for a day or two without insulin. You eat properly, you record your BGs, and then you cautiously introduce tiny amounts of fast-acting insulin where necessary. So, you’d only have a few higher sugars. Frantic exercising after food is part of disordered eating. If it’s really affecting you, please speak to someone. Even a general counsellor can be good to untangle your thoughts. X


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## ColinUK (Feb 24, 2022)

EmmaL76 said:


> Thing is I always tell myself that I should be able to cope, almost feels weak. Which I know is stupid


I don’t know if you read any of my ramblings I’ve mentioned my own mental health (depression, anxiety, PTSD) and I totally get that “I should be able to cope” thought. It often goes hand in hand with “yeah but other people have it much worse than me”. 

It doesn’t matter one iota if some are ‘worse’ than you. You’re the one who matters. 

GP’s, doctors, psychiatrists etc have heard or seen everything you could possibly throw at them before and they are there to help. Sometimes it’s hard getting a GP to hear what you’re saying though so that’s where going to A&E and seeing the duty psychiatrist comes into play. 

You do need a certain strength and resolve to get to A&E and clearly say you need to see then but you’ll likely be taken out of A&E and shown to a family room so you can sit somewhere quietly and then they’ll come and listen to you. And they really do listen. 

I’ve gotten to the point twice where I have been so frustrated by the GP and their lack of empathy and compassion that I just needed to know someone heard what I was saying, the duty psychiatrist fills that role.


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## ColinUK (Feb 24, 2022)

Also it’s not “stupid” to think as you do. It’s human nature to think we can cope, to not want to bother anyone else. 
All the feelings and thoughts you’re having are valid but it’s also valid to get help when you feel you have nowhere else to turn.


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## ColinUK (Feb 24, 2022)

EmmaL76 said:


> Thankyou so much for the advice, I did have a full blown break down around feb last year and was put on the list for mental health services but as of yet I’ve heard nothing. I have sought out my own treatment but stopped that a while back as she just wanted to talk about my childhood and home life when I specifically wanted help with my health anxiety. My lipids are not too bad, 5.4 for total but all others were really good. So you might be right about putting that on the back burner for now xx


I’m reading this backwards hence my responding to this post now. 

So you were referred to mental health services but haven’t heard anything?

That’s typical unfortunately as they’re constantly underfunded of course. 

I know I’m a proponent of going to A&E for mental health stuff - the duty psychiatrist will set up a link for you with the crisis team and by going you’ll likely jump the queue for being seen by the wider MH services team. 

And just because you get referred to the crisis team doesn’t mean you’re insane or mad or anything! For me it was a reassuring hug kinda. I carried the crisis team card in my wallet for ages and the number is in my phone even now. I’ve not had to call them but they called me to check in and they got me in to therapy.


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## EmmaL76 (Feb 24, 2022)

Thankyou Colin, for your honesty and your time. Yes I was referred after a breakdown in feb 21. If I’m honest I’ve had some pretty rough years and my diagnosis was the cherry on top. Then my doctor decided I must have cancer as I wasn’t ticking any boxes. Her exact words were we do not think you have diabetes we think you have raised blood sugars due to cancer we suspect pancreatic. I passed the phone to my husband and she repeated it to him. I felt like all the blood  had drained from my body and that was it, I was gone. I went through lots of tests over a few weeks and don’t really remember much about that time. The diazepam meant I would just sit and stare for hours. My test were all clear but I developed a severe phobia of doctors, I even switched surgery because I couldn’t go in the building where it all happened. I am slowly beginning to realise that overcoming the mental aspect is going to be harder than dealing with the diabetes. I have however made a start, it might seem silly but it’s a massive big deal for me, I ate 20g of cereal this morning with no treadmill may I add, photo evidence included


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## gll (Feb 24, 2022)

Big hugs to you this morning Emma. I know the cereal must have been hard <3

I'm a bit rubbish for practical advice but I am here with unlimited hugs and cheering you on x


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## EmmaL76 (Feb 24, 2022)

Mrs Mimoo said:


> I hope you are not too sad. If you have a little money you could get a private diagnosis? I had to do that to get my tachycardia diagnosed. Now back in NHS but it was worth £300 to go to spire hospital and get a proper doctoring.


I have been down the private route a couple of times both endos said it would not be something that they could do to take over my care and that I need to work with my own team. I was gutted xx


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## Proud to be erratic (Feb 24, 2022)

EmmaL76 said:


> Thankyou Colin, for your honesty and your time. Yes I was referred after a breakdown in feb 21. If I’m honest I’ve had some pretty rough years and my diagnosis was the cherry on top. Then my doctor decided I must have cancer as I wasn’t ticking any boxes. Her exact words were we do not think you have diabetes we think you have raised blood sugars due to cancer we suspect pancreatic. I passed the phone to my husband and she repeated it to him. I felt like all the blood  had drained from my body and that was it, I was gone. I went through lots of tests over a few weeks and don’t really remember much about that time. The diazepam meant I would just sit and stare for hours. My test were all clear but I developed a severe phobia of doctors, I even switched surgery because I couldn’t go in the building where it all happened. I am slowly beginning to realise that overcoming the mental aspect is going to be harder than dealing with the diabetes. I have however made a start, it might seem silly but it’s a massive big deal for me, I ate 20g of cereal this morning with no treadmill may I add, photo evidence included


Well done Emma - we can't all physically help, but we are with you in spirit. Your graph doesn't surprise me and wouldn't alarm me (mine is frequently like that); big leap up after such a long time for you on very low carbs would seem normal to me. I'd try a tiny bit of insulin now to contain this and as part of the experimenting that others have suggested. Stay strong and keep posting.


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## Inka (Feb 24, 2022)

@Proud to be erratic is right @EmmaL76 Very low carb does cause physiological insulin resistance. It’s why people on very low carb diets are advised to eat more carbs for a while prior to something like an oral glucose tolerance test else they’d get artificially high numbers.

You mentioned earlier that you did speak to someone but they kept going on about your childhood, etc. if you see a private counsellor, you can tell them at the first appointment what you want to talk about and what your aim is. If they randomly start sessions by going on about something else, don’t be afraid to interrupt them and say directly that you’d rather continue talking about your specific issue. Mine had a phase of trying to ramble on about general stuff, and after being a bit evasively polite, I directly told her I wanted to talk about ‘X’. Don’t be afraid to do that. Sometimes they get into a habit of going through their interesting little topics, which might be ok if you had endless time and money, but not many people do. 

Well done on eating the cereal! I know you’ll think I’m just spouting a cliche but I’m not - it genuinely does get easier each little step you take. Not only that, your mental processes will probably be improved by better nutrition. You’d be surprised how much better you can feel when you’re properly fuelled and in a good eating routine. X


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## rebrascora (Feb 24, 2022)

Well done from me too. I know that must have been a really difficult step but it is major progress. 

Can I just suggest that you alter your Libre settings to the standard 3.9-10 that are commonly used.... even for non diabetic people. This is important, firstly because non diabetic people fluctuate within this larger range, so by setting it at 4-7 you are trying to achieve something that "normal" people often cannot achieve and mentally it is setting you unrealistic targets... which you are then trying to adhere to. The 4-7 range guidelines for diabetes relate to spot BG tests before meals and should not be applied to Libre which shows you what BG levels do in between those spot tests. Having that very narrow green band on your graph gives you the wrong perspective. You also have to remember that 70% time in range (3.9-10) means that your diabetic management is very good..... so it doesn't mean that you should never go above 10. The doctors and nurses now understand that it is perfectly acceptable to go above 10 as long as you come back down again reasonably promptly most of the time, either by use of insulin or exercise. If it doesn't come back down from double figures in say an hour, then try a unit of insulin. 

Please amend that range to 3.9-10 because I know that bigger range has made a massive difference mentally to how I cope with my diabetes (and my perfectionism) and whereas I was really struggling to achieve the 4-7 premeal BG targets quite often, which made me feel like I was doing badly, I can consistently get 80-95% time in range with this Libre recommended range and that means that I am actually excelling rather than failing. It may seem like changing the goal posts in order to achieve success but it really isn't. BG and Libre monitoring are very different and you have to adopt different approaches. Not only that but I think at long last clinicians are starting to realise that making us feel like "bad diabetics" when we fail to achieve unrealistic targets is demotivating and damaging mentally. Getting a positive result and feeling like you are doing well is much more encouraging to keep at it and perhaps try to do better still. So set those goal posts wider apart and don't be frightened of missing occasionally or even regularly. There are a lot of top class footballers who get paid huge sums of money and still don't hit the target, often in front of millions of people..... surely you are allowed to send a few wide of the posts or over the top.


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## EmmaL76 (Feb 24, 2022)

Proud to be erratic said:


> Well done Emma - we can't all physically help, but we are with you in spirit. Your graph doesn't surprise me and wouldn't alarm me (mine is frequently like that); big leap up after such a long time for you on very low carbs would seem normal to me. I'd try a tiny bit of insulin now to contain this and as part of the experimenting that others have suggested. Stay strong and keep posting.


Thankyou , it’s lovely to know I have support like this. Thinking about it maybe I should of tried the carbs in the afternoon as mornings are not so great for me, however I don’t know if I spurted out some excess insulin but I’ve been between 3.9-5 most of the day and even lunch (which included some crisps! ) hardly had an impact


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## EmmaL76 (Feb 24, 2022)

Inka said:


> @Proud to be erratic is right @EmmaL76 Very low carb does cause physiological insulin resistance. It’s why people on very low carb diets are advised to eat more carbs for a while prior to something like an oral glucose tolerance test else they’d get artificially high numbers.
> 
> You mentioned earlier that you did speak to someone but they kept going on about your childhood, etc. if you see a private counsellor, you can tell them at the first appointment what you want to talk about and what your aim is. If they randomly start sessions by going on about something else, don’t be afraid to interrupt them and say directly that you’d rather continue talking about your specific issue. Mine had a phase of trying to ramble on about general stuff, and after being a bit evasively polite, I directly told her I wanted to talk about ‘X’. Don’t be afraid to do that. Sometimes they get into a habit of going through their interesting little topics, which might be ok if you had endless time and money, but not many people do.
> 
> Well done on eating the cereal! I know you’ll think I’m just spouting a cliche but I’m not - it genuinely does get easier each little step you take. Not only that, your mental processes will probably be improved by better nutrition. You’d be surprised how much better you can feel when you’re properly fuelled and in a good eating routine. X


physiological insulin resistance

I’m sure this is definitely a thing, never really thought about it, but would make total sense particularly when looking at the rest of my day which seemed better than usual. 
I think sometimes therapists just assume everything that’s wrong with you is always related to your past. I can deal with that stuff but it’s the hear and  now bothers me. 
I do want to feel better… I really do xx


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## EmmaL76 (Feb 24, 2022)

rebrascora said:


> Well done from me too. I know that must have been a really difficult step but it is major progress.
> 
> Can I just suggest that you alter your Libre settings to the standard 3.9-10 that are commonly used.... even for non diabetic people. This is important, firstly because non diabetic people fluctuate within this larger range, so by setting it at 4-7 you are trying to achieve something that "normal" people often cannot achieve and mentally it is setting you unrealistic targets... which you are then trying to adhere to. The 4-7 range guidelines for diabetes relate to spot BG tests before meals and should not be applied to Libre which shows you what BG levels do in between those spot tests. Having that very narrow green band on your graph gives you the wrong perspective. You also have to remember that 70% time in range (3.9-10) means that your diabetic management is very good..... so it doesn't mean that you should never go above 10. The doctors and nurses now understand that it is perfectly acceptable to go above 10 as long as you come back down again reasonably promptly most of the time, either by use of insulin or exercise. If it doesn't come back down from double figures in say an hour, then try a unit of insulin.
> 
> Please amend that range to 3.9-10 because I know that bigger range has made a massive difference mentally to how I cope with my diabetes (and my perfectionism) and whereas I was really struggling to achieve the 4-7 premeal BG targets quite often, which made me feel like I was doing badly, I can consistently get 80-95% time in range with this Libre recommended range and that means that I am actually excelling rather than failing. It may seem like changing the goal posts in order to achieve success but it really isn't. BG and Libre monitoring are very different and you have to adopt different approaches. Not only that but I think at long last clinicians are starting to realise that making us feel like "bad diabetics" when we fail to achieve unrealistic targets is demotivating and damaging mentally. Getting a positive result and feeling like you are doing well is much more encouraging to keep at it and perhaps try to do better still. So set those goal posts wider apart and don't be frightened of missing occasionally or even regularly. There are a lot of top class footballers who get paid huge sums of money and still don't hit the target, often in front of millions of people..... surely you are allowed to send a few wide of the posts or over the top.


Ha ha , you noticed my target range was quite small then. I did start at 4 to 9, but it gradually crept down lol.  The libre is wonderful but I think maybe it just become another way to punish myself. I’d say when i spike (which I don’t allow myself to do very often) I would be back down within the hour xx


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## Proud to be erratic (Feb 24, 2022)

EmmaL76 said:


> Ha ha , you noticed my target range was quite small then. I did start at 4 to 9, but it gradually crept down lol.  The libre is wonderful but I think maybe it just become another way to punish myself. I’d say when i spike (which I don’t allow myself to do very often) I would be back down within the hour xx


I resisted commenting on that; however, on reflection, as I understand from a T1 cousin of over 40 yrs the traditional advice in the era before technology joined the party was to try to stay between 4-7.  No doubt this was because only by setting nearly impossible parameters could people with diabetes achieve something "near".

But it seems to me that 4-10 are now the internationallly accepted 'in range' parameters, when taking advantage of technology for BG monitoring rather than just finger pricking. We are moving into a new and I truly believe better understanding of what problems diabetes can cause and these wider in range parameters reflect that understanding. Not only does technology give us better visibility of our BG status minute by minute, but it allows faster response when appropriate. So I agree with @rebrascora and think that you should "play fair" and use the technology with the appropriate parameters of 4-10. You are "punishing yourself" unnecessarily by trying to use the older parameters with the new technology!


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## Bruce Stephens (Feb 24, 2022)

Proud to be erratic said:


> as I understand from a T1 cousin of over 40 yrs the traditional advice in the era before technology joined the party was to try to stay between 4-7


Probably that was intended for "when you measure", so mostly just before meals. The current 3.9-10.0 is for all the time, which (before CGMs) we had no way to judge. (No good way. I guess you could try testing at random times of the day and that sort of thing, but I don't remember anyone suggesting doing that.)


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## AndBreathe (Feb 24, 2022)

@EmmaL76 - I was pondering your situation.

Regarding your diabetes care, there's an option I should have thought of prior to my last response, but I didn't, but here goes.

As I understand it, your diabetes consultant has left the clinic and not been replaced.  An Endo you consulted privately felt unable to help as you have a clinic (even if the reality is they are absent).

Under the NHS you are entitled to a second opinion on anything you are unhappy with.  (No care = unhappy in my book).  You then ask your GP to arrange a second opinion, and name the person you want to see.

They can and should do this.  The reason I am absolutely firm on this is I have done it - at the suggestion of my GP.  She way out of her depth with my thyroid, and my initial referral uncovered a consultant with no interest.  My GP suggested I should see someone else and sent me off to research whom I wanted to see.  I just called her with the name and she made the referral.

She was happy to refer on the NHS or privately.  It was expedient to have the consultation privately, to avoid a wait.

The Endo was happy to pick up my care, even though the initial Endo was a colleague of his in the same hospital.  I am still under the second guy's care, who generally sorted me out.

Similarly, I understand you can ask to plain old change clinics.

If your choice would be to swap care to the Endo you've already seen, just tell your GP what you want to happen.

A second opinion, on the NHS does not have to be in the same clinic, hospital or even CCG.  You can choose where you go, although where long term care is involved, you would need to consider the convenience (or otherwise) of going a long way out of your area.


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## Proud to be erratic (Feb 24, 2022)

Bruce Stephens said:


> Probably that was intended for "when you measure", so mostly just before meals.


Certainly before meals and of course before driving and associated DVLA rules (his work involved a lot of driving around UK); also when feeling hypo and hyper (which my cousin told me he regularly could recognise).
Strangely, to me, until a very recent incident he never had any means of testing for ketones.


Bruce Stephens said:


> The current 3.9-10.0 is for all the time, which (before CGMs) we had no way to judge. (No good way. I guess you could try testing at random times of the day and that sort of thing, but I don't remember anyone suggesting doing that.)


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## BeeBusy (Feb 24, 2022)

My (((hug))) wants to queue in line with all the other hugs you were sent in this thread, @EmmaL76, so that you never run out of them. I hope you get the care you need soon.


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## teapot8910 (Feb 24, 2022)

I can't add to all of the advice already given but wanted to offer another virtual hug <3

edit - just a thought @EmmaL76 could you try contacting Partha Kar? He is clinical lead for NHS England and often offers his help to people on Twitter who are having issues with teams/referrals etc. so may be able to help you


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## gll (Feb 25, 2022)

Good Morning @EmmaL76 
Just checking in and seeing how your day went yesterday, where you are at this morning and to leave a fresh "Pile o Hugs".


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## ColinUK (Feb 25, 2022)

EmmaL76 said:


> Thankyou Colin, for your honesty and your time. Yes I was referred after a breakdown in feb 21. If I’m honest I’ve had some pretty rough years and my diagnosis was the cherry on top. Then my doctor decided I must have cancer as I wasn’t ticking any boxes. Her exact words were we do not think you have diabetes we think you have raised blood sugars due to cancer we suspect pancreatic. I passed the phone to my husband and she repeated it to him. I felt like all the blood  had drained from my body and that was it, I was gone. I went through lots of tests over a few weeks and don’t really remember much about that time. The diazepam meant I would just sit and stare for hours. My test were all clear but I developed a severe phobia of doctors, I even switched surgery because I couldn’t go in the building where it all happened. I am slowly beginning to realise that overcoming the mental aspect is going to be harder than dealing with the diabetes. I have however made a start, it might seem silly but it’s a massive big deal for me, I ate 20g of cereal this morning with no treadmill may I add, photo evidence included


Sometimes doctors are atrocious. 
I had a run of headaches and back pain. Doctor said “I’ll get you a scan because it’s probably cancer”

Turns out it was a side effect of medication they prescribed. 

Another time I presented with depression and was asked “Have you considered turning to Jesus?” 

Ok so now I can laugh at both of those but at the time I was devastated and dismayed. 

How are you this morning anyway?


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## ColinUK (Feb 25, 2022)

I saw someone mentioned Partha Kar. 
He’s on Twitter @parthaskar and his email is:

drparthakar@gmail.com

He’s at Portsmouth Hospital Trust so will also have an NHS email but I can’t find it.


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## EmmaL76 (Feb 25, 2022)

Good morning everybody, was really overwhelmed to see all the responses again this morning. Thankyou everybody for the suggestions you have given me to try and get some help. I did try yesterday to book in with my doctors to try and get to somewhere but they couldn’t get me in till the 26th March. The problem is with me I have to get things done whilst I’m in the frame of mind to do it or I just leave it and plod on. So I am going to look at other routes like suggested. Thanks for all the hugs and well wishes, for those with practical suggestions and those who can offer nothing but support. You all have your own struggles so it means a lot. I am starting to look at myself in a different light, I had a bit of a moment yesterday when I got quite upset, feeling weak and pathetic  when someone said to me that I was the strongest person they knew !! I was like what me? I’m a mess? Couldn’t believe that somebody could see me like that. Turned from quivering mess into Zena warrior princess lol


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## EmmaL76 (Feb 25, 2022)

ColinUK said:


> I saw someone mentioned Partha Kar.
> He’s on Twitter @parthaskar and his email is:
> 
> drparthakar@gmail.com
> ...


Thankyou so much Colin your a proper legend as my kids would say


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## EmmaL76 (Feb 25, 2022)

gll said:


> Good Morning @EmmaL76
> Just checking in and seeing how your day went yesterday, where you are at this morning and to leave a fresh "Pile o Hugs".


Morning thank you so much, day was ok trying to ignore the higher sugars and think of the bigger picture. This morning is a nightmare though which isn’t helping, my new drive was supposed to be finished yesterday and it wasn’t, having a new fire fitted today and when they couldn’t get over the drive with all their stuff they  kicked off! I didn’t cry and I’m definitely not scanning my libre !


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## EmmaL76 (Feb 25, 2022)

teapot8910 said:


> I can't add to all of the advice already given but wanted to offer another virtual hug <3
> 
> edit - just a thought @EmmaL76 could you try contacting Partha Kar? He is clinical lead for NHS England and often offers his help to people on Twitter who are having issues with teams/referrals etc. so may be able to help you


Thankyou so much for that suggestion and for the hugs… I can’t believe everybody is being so nice xx


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## EmmaL76 (Feb 25, 2022)

BeeBusy said:


> My (((hug))) wants to queue in line with all the other hugs you were sent in this thread, @EmmaL76, so that you never run out of them. I hope you get the care you need soon.


What a lovely thing to say… Thankyou so much xx


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## ColinUK (Feb 25, 2022)

EmmaL76 said:


> Thankyou so much Colin your a proper legend as my kids would say


More like a leg end


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## rebrascora (Feb 25, 2022)

Emma we are being so nice because you are an absolutely lovely person and you deserve it and we care about you..... and yes, you are incredibly strong both physically and mentally.... in some respects maybe too strong. I think very few people could continue as long as you have been on such a restrictive diet but also take the time to be helpful and supportive to other people who are probably not in as bad a place as yourself. The thing is that you have been using that strength against yourself instead of helping yourself. I can be my own worst enemy too and my biggest critic, but with diabetes you really have to find better balance and be kinder to yourself. It is tough enough to manage as it is without making it harder for yourself. 
I totally understand how there are times when you know you are ready to ask and accept help and other times when you aren't in the right frame of mind. I wonder if it would help to ring the Diabetes UK helpline when you feel you are more open to discussion and change. You do need to be very clear and open about the situation though whoever you talk to as as your concerns about eating carbs and your levels rising and half starving yourself as a result are the biggest factor in this and they are almost certainly causing the confusion with your diagnosis. It is important to make that clear. As with diabetes, recognition and acceptance of the problem and acknowledging it, is the first step in dealing with it. 

So sorry that you have had a stressful morning with tradesmen. So not what you need right now! Sending you more (((HUGS))) to add to the big pile you already have. XX


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## gll (Feb 25, 2022)

Hi Emma.
Barbara is right, you are the first one to try and help and support other folks so you just sit down right there lady and accept the mountain of hugs and love dammit 

I think a lot of people can identify with the idea of eating perfectly "normal" food feeling like self harm and its one of those mind traps that it is hard to escape.
I went through a period where I was terrified to eat anything all day if my bg was high as I don't have the tools to bring it down beyond normal meds, so by not eating anything with any carbs it would eventually come back to a somewhat acceptable level.
What that did for me was give me a much improved hba1c and a bigger fight to get meds adjusted since on paper I'm doing great.
I can wake up on 7-8 on a good day but often sitting in low-high teens by the end of the day. I hate it but "helping" myself too much just means a much much bigger challenge in the long run to get the right treatment regime, whatever that is for me.
I can and accept that sugar is off the table and a lot of rubbish carbs are too for the most part but I need to find a diet and medication balance that is compatible with my life in the long term. Do I hate seeing high bg on the meter - yep, does it make me want to not eat anything - yep, but my end goal has to be more than day to day.  
I need to be able to not be terrified of being anywhere but home at a mealtime if my choice is limited. I have literally been last min out for lunch and gone to the butchers to get some sliced cooked meat and nibbled that before going in and sitting with a coffee in a cafe instead of having a nice lunch with friends. I need to not feel guilty for having a rare treat with my family and friends.

I applaud anyone who can *healthily* commit to low carb and manage things that way for life. Like top respect. I'm just not one of those people who can sustain it.

I am not telling you this for support or sympathy from you or anyone else but you need to know that we often have our own mental battles with food since diabetes is on the table regardless of whatever type it is. So when I say I know/understand how hard it was for you to eat cereal yesterday, I really do know how hard it can be (and I'm sure others do too).

Our fight might be different to yours in lots of ways but I want you to really know that it is okay to talk about it, that you aren't alone and the responses aren't just lip service, they are filled with love, understanding and support for you.

it is hard for me to talk about stuff too and here is about the only place I do (and even that is hard) so without trying to sound condescending, I'm proud of you for being so open and honest. Keep doing it <3


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## teapot8910 (Feb 25, 2022)

ColinUK said:


> I saw someone mentioned Partha Kar.
> He’s on Twitter @parthaskar and his email is:
> 
> drparthakar@gmail.com
> ...


Just found it! @EmmaL76 

Partha.kar@nhs.net

He seems extremely helpful and may be able to sort something for you - keeping everything crossed xxx


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## EmmaL76 (Feb 25, 2022)

I know I keep saying it but I’m really touched with all the responses. Im still trying to stay relaxed about my readings, not gonna lie, it’s been difficult. I did as advised and upped my range to 9, maybe I will push it to ten but baby steps for now, it was strange to see an 8.9 in green today ! But mentally it felt different. Im so happy to hear that people have found me supportive in the past as I always have this feeling that I talk rubbish.  Im the kind of person that will have a conversation in the street then walk away thinking I bet that person thought what an idiot..


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## AndBreathe (Feb 25, 2022)

ColinUK said:


> Sometimes doctors are atrocious.
> I had a run of headaches and back pain. Doctor said “I’ll get you a scan because it’s probably cancer”
> 
> Turns out it was a side effect of medication they prescribed.
> ...


Oh, I had a real doozie a couple of years ago.

I'd had surgery on a breast for fibromatosis.  In essence, whilst fibromatosis is destructive and can do untold damage if not dealt with it, in UK it is considered benign.  In the US, they have a vague way of discussing it.  Odd.

Anyway, I had seen the full; path report of the tissue removed, so was content in the findings.

When I looked at my medical record it stated I had had surgery for breast carcinoma.  Just blunt statement.

I went to the surgery to sort it out.  The Practise Manager was adamant fibromatosis was cancer and even if it wasn't it didn't make any difference.

I insisted I would not be leaving the building until my record had been corrected.  I explained I had taken m iPad with me to amuse myself whilst the task was completed.

After a bit of a stand-off, she went to talk to a Doc, who corrected my record.

I appreciate that the entry was made in my record by someone coding it in, but for a non-qualified manager to make point blank statements outwith her qualifications took my breath away.

(She has left now, although nothing to do with me!)


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## gll (Mar 1, 2022)

Hows things been the last few days @EmmaL76 ?

{{more fresh free hugs}}


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## EmmaL76 (Mar 1, 2022)

Hi and thanks so much for asking.. I don’t really know what’s going on with me to be honest. I tried a couple of days of eating a little more but the anxiety took over.  A few days ago I went back to my normal way of eating but my sugars have remained high, in fact they are getting higher. I’m starting to feel absolutely dreadful. I’ve tried again to get an appointment at my doctors but the wait is around 4 weeks. Depression and exhaustion are taking over now. I haven’t been back on this thread because for some reason I reach out then find it impossible to follow advice. I feel quite guilty because I have 4 kids who all need me for various reasons at the minute and I feel useless. I used to think I was such a good mum but I’m just not the same person anymore,  and I miss the old me.. for a start the old me would of definitely shaved her legs within  the last month ! Hope you are doing well and apologies for the deep dark stuff, I would love to say I’m doing great but I’m just not xx


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## rebrascora (Mar 1, 2022)

Oh Emma! So sorry to hear that you have slipped back from the little progress you were making but totally understandable. It isn't easy and when you are already so run down, it is very hard to make sustained changes. It takes a lot of mental effort and when you are so exhausted, especially with a family to look after, it is not surprising that you just can't manage. 
The problem is that sooner or later you are not going to be well enough to look after your family either.... Is there anyone within your family who can take a bit of the strain off you? Parents, in laws, husband, siblings? You need help and these people will have to step up when you are no longer able to keep a lid on this and that is only a question of time unless you alleviate some of the pressure now and focus on your own health. 
Sending you lots more (((HUGS)))


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## EmmaL76 (Mar 1, 2022)

rebrascora said:


> Oh Emma! So sorry to hear that you have slipped back from the little progress you were making but totally understandable. It isn't easy and when you are already so run down, it is very hard to make sustained changes. It takes a lot of mental effort and when you are so exhausted, especially with a family to look after, it is not surprising that you just can't manage.
> The problem is that sooner or later you are not going to be well enough to look after your family either.... Is there anyone within your family who can take a bit of the strain off you? Parents, in laws, husband, siblings? You need help and these people will have to step up when you are no longer able to keep a lid on this and that is only a question of time unless you alleviate some of the pressure now and focus on your own health.
> Sending you lots more (((HUGS)))


I think that’s the most hurtful part, I have all of the above family members but back when My mental health was at its worst people started actively avoiding me, nobody ever asks how I am. My husband works very long hours, my house is way too big for me to cope with so the vicious cycle of self pity because nobody cares about me and self loathing because my house is a tip and my legs are hairy continues


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## gll (Mar 1, 2022)

never apologise for the deep dark stuff <3  

Mental health can be so hard to make any headway with and its that constant battle between you knowing what you should do but actually doing it is another story. Then its the being annoyed with yourself for not being able to do something that should be so simple and its an ongoing cycle sinking you further and further down.

While I don't have an eating disorder, depression and I are old friends. I understand. Self care goes out the window.

My question / challenge to you today is:
What one thing can you manage do today to improve something?
Doesn't have to be epic. Doesn't have to be life changing. One single thing.
It could be shaving your legs. having a shower. Tidying up a *small* corner of the house if its getting on your nerves.
Something that will say to you "I did a thing. I won today".

Sometimes winning is one small thing at a time. For me, some days it really was just the fact I got up, showered and into clean PJs. Literally just that. Others it was managing to clear the sink and put on a load of washing.
Everyday tasks to some but to me it was a victory. Enough to make me want another one tomorrow.

Find a victory everyday.

As far as medical care is concerned, take that 4 week appointment as a backup but ask if you phoned on the day, would they be able to see you sooner. Phone and try and a last resort is the one 4 weeks from now. 

Emma all I can say is I care. I want you to win today. Massive hugs to you x


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## EmmaL76 (Mar 1, 2022)

What a lovely way to look at it. I’m so sorry you suffer too with depression. Sometimes it seems much easier to let it take you over than to get yourself out of it. I made my sons favourite tea, which he was really grateful for so that a little victory. I will try my very best to make some progress every day, but you know when you get up and you just know it’s another one of those days and there is absolutely nothing you can do about it. I’m so tired of it, I don’t look forward to anything, I don’t enjoy doing anything. Thats a lie, I look forward to going to bed, and I’m being deadly serious, I can’t wait to go to bed so that I have an excuse to just lie there are do nothing but I hate mornings ! Xx


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## Inka (Mar 1, 2022)

@EmmaL76 Don’t wait 4wks - ask for an emergency appointment. It’s not a magic answer but maybe a few months of anti-depressants would be an option? Even a low dose can ease the mental pain.

As for looking after yourself, can you see it as a job? You get up and have chores and things to do for other people, right? Add _your_ ‘jobs’ to the list. Be sure they’re self-care jobs you actually want to do rather than chores to punish yourself, if you get what I mean. I find a few minutes of primping each morning is almost like a meditation. Nothing major, just a little routine to go through.


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## rebrascora (Mar 1, 2022)

EmmaL76 said:


> I think that’s the most hurtful part, I have all of the above family members but back when My mental health was at its worst people started actively avoiding me, nobody ever asks how I am. My husband works very long hours, my house is way too big for me to cope with so the vicious cycle of self pity because nobody cares about me and self loathing because my house is a tip and my legs are hairy continues


If it's any consolation my house will undoubtedly be a bigger "tip" than yours and I am pretty certain my legs will be far hairier..... Hope we don't have to get into comparing photos here!   Both concern me but in the scheme of things my diabetes management and health come above those. I am really lucky in that I have friends and a wonderful sister who accept me for who I am.... hairy legs, messy house, mental instability and all.... You are a lovely person and I am pretty sure there will be people in your life who would be there for you if you open up and admit that you are struggling and need help. Being too strong and independent makes it difficult for people to offer help.... I know because I am guilty of it and it takes an immense amount of effort and anxiety for me to ask for help. I really hate needing to do it. Sometimes it becomes such a massive issue and I have to push so hard to break through my stubbornness and independence that I handle it really badly when I do and that doesn't really encourage me to ask again. I also think choosing the right person to ask is important. The way my sister explains it is that I get pleasure/reward/self esteem even, from helping other people. Why would I rob other people of that opportunity and good feeling of helping me, particularly people who love me and want to help.

Brilliant post from @gll. I can totally relate to what she has written. Some days just getting in the shower is an impossible task. I negotiate with myself and try to make the task as easy as possible, so that I can somehow make it more achievable. Ok, so I haven't shaved my legs since early December but I have managed to keep my pits shaved so that is a success! You have to look for the small triumphs and positives and focus on those rather than berating and punishing yourself for the things you haven't done. 
Feeling good about the things you have achieved is very important. That favourite tea that you cooked your son is a great example, especially as he appreciated it so much. You just need to devote a little effort to yourself because you matter too.


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## Inka (Mar 1, 2022)

@EmmaL76 @rebrascora  Ladies - worry not! With a herd of children and a mad dog, my home is by far the biggest tip out there! I’m fighting a losing battle against domestic chaos 

Emma, don’t judge yourself. Allow us to do that. You’re a sensitive, kind, smart person and you deserve every care, both from yourself and those around you. Don’t be afraid to articulate what you need, or even write it down. Sometimes we become ‘background’ and nobody stops to think whether we’re ok. Speak up. XX


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## Elenka_HM (Mar 1, 2022)

Emma, if I had 4 children I don't think I would ever be able to shave my legs again! Tbh I don't bother most of the time and I wear a skirt as a part of my uniform, so I don't think its too important. Anyway, I know the legs are not the main point in here (but maybe for you is a bit like the drop that fills the cup).  

As others said, you are surely doing more than you think and you deserve to be kind to yourself AND to be cared for. I can't talk from personal experience but I often see mums in my family taking care of everyone else, putting everyone's needs before their own, and it may be natural and people get used to it, so they don't remember that you also have your needs. But you have them and it should be alright to ask for help. I'm not saying it's easy, but you have all the right to do it. 

Someone suggested the small goals on the day like taking a shower and such. I am the kind of person who gets satisfaction from writing (on paper) a list of tasks and then cross them, and I admit I sometimes put stuff like shower and do the dishes so I have something really easy to cross. And some days, I don't even get those done. I'm not sure if I should worry or I am just lazy as hell. Where I am going with this is, I am sure you are doing more than you give yourself credit for. Taking care of your family is hard work even without a medical condition on top, so don't beat yourself up for not doing everything as a perfect fictional woman/mom/wife etc, you are human. 

Sorry about the rambling and possible writing mistakes, this post comes from a tired brain after a long day!


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## EmmaL76 (Mar 2, 2022)

Thank you again everybody. The kindness you show to me sometimes makes me want to cry! I have found an endocrinologist who will assess me and can also prescribe and treat me privately, he said I should have an appointment within the next 2 weeks. Obviously I have to pay but it is what it is. Not before time either, although I have continued with my low carb my sugars have risen quite considerably. My average used to be 5 ish now it’s 7. I’m not getting below 7 during the night when before I was having fasting of 4.3 ish this morning it was 8. Not a massive big deal for most diabetics i know but it’s a big deal for me to suddenly change so much when I’ve been seeing good numbers for a good while and it’s playing havoc with my anxiety. I hope you are all well. 
Ps I should mention most of my kids are over 18 so I don’t won’t you to think I’m run ragged with them, but it seems as they get older they need more support but for different reasons xx


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## gll (Mar 2, 2022)

Mine are 19 and 20 so hear you there! (kids I mean)

Good news with the endo! 
I really hope they can get you figured out short and long term.
Getting you a plan to have some wiggle room with eating a bit more is defo needed short term while tests happen.

Any thoughts on the mental health appointments (well chasing them)?

Lastly, what are you going to do today for your win? 
(although I feel getting the endo appointment should count for at least 10 lol)

{{more hugs}} << take as many times a day as needed x


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## rebrascora (Mar 2, 2022)

Just remember Emma, it is a waste of money if you don't advise the Endo of the full circumstances ie. Your eating anxiety and very strict diet. They need to know the full picture, so don't down play that. It is a really important and relevant aspect with respect to the diagnosis.  
Also it might be helpful to mention about the urine C-peptide tests you have had done and perhaps enquire about a blood c-peptide. 
Personally I think you would be wiser spending the money on counselling to help you overcome your issue with food as that is still going to be a problem regardless of your diabetes diagnosis/treatment and something you obviously need help with. 
I wish you lots of luck in finding some clarity. When is the appointment?


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## Inka (Mar 2, 2022)

@EmmaL76 I know anxiety isn’t always logical but remember that non-diabetics commonly see blood sugars of 7 or more. I’m very glad you have an endo appointment but I absolutely second @rebrascora in saying that you must give them the full picture. If you don’t, there’s the possibility your diagnosis will get messed up again and this will drag on and on. Be frank, be clear. If you prefer to write it down then that might be easiest. Trying to explain something when you’re emotional is hard, and it’s also hard for the listener to retain key facts.


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## Leadinglights (Mar 2, 2022)

If you have the E-mail contact of the person you are going to see perhaps you could send them an outline of your situation and any test results you have as they may not have access to your NHS record.
It would mean they can be prepared and be able to ask pertinent questions at your appointment.


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## EmmaL76 (Mar 2, 2022)

gll said:


> Mine are 19 and 20 so hear you there! (kids I mean)
> 
> Good news with the endo!
> I really hope they can get you figured out short and long term.
> ...


I have a 12 year old son, and my daughters are 18,22 and the eldest is 24 on Friday. So making a cake is what I will do today for my win points lol. I know my mental health is a bigger challenge than the diabetes, so I have booked and appointment with my doctors for that side of things (do I get another point for that ? ) xx


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## EmmaL76 (Mar 2, 2022)

rebrascora said:


> Just remember Emma, it is a waste of money if you don't advise the Endo of the full circumstances ie. Your eating anxiety and very strict diet. They need to know the full picture, so don't down play that. It is a really important and relevant aspect with respect to the diagnosis.
> Also it might be helpful to mention about the urine C-peptide tests you have had done and perhaps enquire about a blood c-peptide.
> Personally I think you would be wiser spending the money on counselling to help you overcome your issue with food as that is still going to be a problem regardless of your diabetes diagnosis/treatment and something you obviously need help with.
> I wish you lots of luck in finding some clarity. When is the appointment?


I plan to write it all down and give it to him at the start of the appointment or maybe email it across as discussing it often provokes tears then nothing gets sorted. I’m not sure when the appointment is, they asked me to send all the consultant letters from previous to them and they will get back to me xx


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## EmmaL76 (Mar 2, 2022)

Leadinglights said:


> If you have the E-mail contact of the person you are going to see perhaps you could send them an outline of your situation and any test results you have as they may not have access to your NHS record.
> It would mean they can be prepared and be able to ask pertinent questions at your appointment.


Thankyou for that thought, I was thinking that myself too. I have his secretary’s email, I was talking to her last night and she said there has been a massive surge in endocrinologist demand and they can hardly keep up !


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## EmmaL76 (Mar 2, 2022)

Inka said:


> @EmmaL76 I know anxiety isn’t always logical but remember that non-diabetics commonly see blood sugars of 7 or more. I’m very glad you have an endo appointment but I absolutely second @rebrascora in saying that you must give them the full picture. If you don’t, there’s the possibility your diagnosis will get messed up again and this will drag on and on. Be frank, be clear. If you prefer to write it down then that might be easiest. Trying to explain something when you’re emotional is hard, and it’s also hard for the listener to retain key facts.


Nothing in my brain is logical, I honestly do realise this, I’m quite frustrating to others as they can see what’s happening with me but I carry on with my own set ways. I do plan to put this all on paper for the consultant. I just want my life back and if that means owning up to the fact that I’m a self sabotaging idiot then so be it lol xx


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## rebrascora (Mar 2, 2022)

Sometimes we can all be our own worst enemy. I know I can certainly make life much more difficult for myself than it needs to be. 
It sounds like you have a good plan. I think you have overachieved already so give yourself lots of gold stars for those things and good luck with the Birthday cake which would take me an immense amount of effort to get my head around, so you can have another gold star just for contemplating it.


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## EmmaL76 (Mar 2, 2022)

rebrascora said:


> Sometimes we can all be our own worst enemy. I know I can certainly make life much more difficult for myself than it needs to be.
> It sounds like you have a good plan. I think you have overachieved already so give yourself lots of gold stars for those things and good luck with the Birthday cake which would take me an immense amount of effort to get my head around, so you can have another gold star just for contemplating it.


I never thought I could bake, then at the start of covid I gave it a go and got really good then D day so now I just bake for others, but still really enjoy it x


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## Inka (Mar 2, 2022)

EmmaL76 said:


> Nothing in my brain is logical, I honestly do realise this, I’m quite frustrating to others as they can see what’s happening with me but I carry on with my own set ways. I do plan to put this all on paper for the consultant. I just want my life back and if that means owning up to the fact that I’m a self sabotaging idiot then so be it lol xx



Most things in life are a balance. If you’re prone to anxiety (I am too) then if you find some set ways are a comfort _and harmless _then it’s ok to keep those things even if others wouldn’t. But when your set ways and ways of thinking become harmful, then that’s the point at which to intervene and put them back in their place. And you can do it 

Food is a popular control mechanism - but it’s not a good one. When someone feels things around them are spiralling out of control, food is one of the few things they can control. Eating disorders are misplaced action, in a way. You say you use food to punish yourself, and you’re far from alone in that. Controlling food intake gives an illusion of control over life, but it’s just that - an _illusion_.

If someone has problems because of X, Y and Z in the past or currently, then that anxiety and fear can turn into disordered eating. Food will be controlled very strictly and control exerted. But when you stop to think about it, how is that helping the completely unrelated and _actual_ problems of X, Y and Z? It’s not. Dealing with past and present trauma and upset is the way forward. Once you begin to see how disordered eating is really a displacement activity and no help at all, then it can help channel your energy into beating it.

Life is short. Time spent on worrying about food could be much better spent. Don’t let the worries steal time from you.


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## Leadinglights (Mar 2, 2022)

EmmaL76 said:


> Thankyou for that thought, I was thinking that myself too. I have his secretary’s email, I was talking to her last night and she said there has been a massive surge in endocrinologist demand and they can hardly keep up !


If you do that as soon as you can then they may realise the urgency of you getting an appointment. We have found the Consultant's secretaries are pretty good at getting things done.
On another note, do your children live at home, if so could they not help with some of the things you are struggling with.
However old your children are you never stop worrying about them, mine are in their late forties but I never stop being concerned but know they would always be there for me if I ever needed help.


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## EmmaL76 (Mar 2, 2022)

Well I’m in next Thursday with another endo. Let’s see what happens this time. Sorry I haven't replied to a couple of messages. I’m a bit all over the place atm, just wanted to tell you all that it’s booked xx


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## gll (Mar 2, 2022)

EmmaL76 said:


> I have a 12 year old son, and my daughters are 18,22 and the eldest is 24 on Friday. So making a cake is what I will do today for my win points lol. I know my mental health is a bigger challenge than the diabetes, so I have booked and appointment with my doctors for that side of things (do I get another point for that ? ) xx


you win today!!!! (and get extra shiny bonus stars for booking the appointment)

So later on, if you are having a crappy moment, remember you made a cake today and you didn't give up.

I hope you at least try the cake yourself (even a teeny bit) but no judgment here if you don't x

huge hugs xxx


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## EmmaL76 (Mar 2, 2022)

gll said:


> you win today!!!! (and get extra shiny bonus stars for booking the appointment)
> 
> So later on, if you are having a crappy moment, remember you made a cake today and you didn't give up.
> 
> ...


I didn’t just make 1 cake, I made a big lemon drizzle and lots of little cakes.  Thanks for the stars and the hugs.   Very much appreciated  xx


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## AndBreathe (Mar 2, 2022)

EmmaL76 said:


> Thankyou for that thought, I was thinking that myself too. I have his secretary’s email, I was talking to her last night and she said there has been a massive surge in endocrinologist demand and they can hardly keep up !


Unless the Endo you are seeing doesn't do any NHS work, he will be able to access your NHS records.  Whether or not they should is one of those moral dilemmas, but they do.  I know this from personal experience.


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## EmmaL76 (Mar 2, 2022)

AndBreathe said:


> Unless the Endo you are seeing doesn't do any NHS work, he will be able to access your NHS records.  Whether or not they should is one of those moral dilemmas, but they do.  I know this from personal experience.


Yes they said they will be able to access all my records. So hopefully we can hit the ground running, I’m hopeful that he will be able to make some sense of it all but being careful not to get my hopes up too much that I come out of there feeling worse when I don’t get any answers xx


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## AndBreathe (Mar 3, 2022)

EmmaL76 said:


> Yes they said they will be able to access all my records. So hopefully we can hit ground running, I’m hopeful that he will be able to make some sense of it all but being careful not to get my hopes up too much that I come out of there feeling worse when I don’t get any answers xx


Hopefully you can transfer to his NHS clinic.  

I don't see an Endo for my diabetes, but do for my thyroid challenges.  My initial consultations with him were privately, then he suggested I transfer to his NHS care as the issue is likely lifelong, and of course insurers won't countenance routine care of chronic conditions.

Sometimes it really is a case of working out which order to play the pieces of the puzzle.  Frustration doesn't cover it, for sure.

The words that scream through my head as times like you are experiencing at the moment are, "it shouldn't be this hard to try to look after ourselves."


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## Mrs Mimoo (Mar 6, 2022)

EmmaL76 said:


> What a lovely way to look at it. I’m so sorry you suffer too with depression. Sometimes it seems much easier to let it take you over than to get yourself out of it. I made my sons favourite tea, which he was really grateful for so that a little victory. I will try my very best to make some progress every day, but you know when you get up and you just know it’s another one of those days and there is absolutely nothing you can do about it. I’m so tired of it, I don’t look forward to anything, I don’t enjoy doing anything. Thats a lie, I look forward to going to bed, and I’m being deadly serious, I can’t wait to go to bed so that I have an excuse to just lie there are do nothing but I hate mornings ! Xx


Please try to be nice to yourself, you are doing a good job for your family, you need to have time too. At the very least have a nice bath, or sit and listen to your senses to try to self sooth. A therapist taught me to sit and test my senses. So, listen for all sounds, smell all smells, see what I you can see and then what you are nearest to touch and then just try to centre yourself. After this little ritual, I you may feel a bit better (I am anxious all the time). xxxx


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## EmmaL76 (Mar 7, 2022)

Thankyou for your message. I’m still hanging in there just by a tiny thread. A lady I used to work with talked me through that technique a while back, I have tried lots of things. She also told me to sit at a window and take everything in, now I have these French doors in my bedroom and rolling fields as a view so it couldn’t be more ideal but my mind carries on racing. Once my therapist at the time was trying to do some kind of reversal technique where you replay a traumatic event like a video but add bits or change them. I think I was supposed to be in some kind of hypnotic state, I made out I was, but really I was thinking that I needed to go to the shop on the way home for lunchbox snacks! For someone often called an airhead in my youth I have terrible trouble emptying my mind


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## Proud to be erratic (Mar 7, 2022)

Keep hanging on there Emma. You already know, from the number of thank you responses that you have written in the last few days, that there is a huge will of support and best wishes for you.
Personally I'm not sure what is better: having an empty mind or being chock-a-block with distractions and irrelevances. Probably its better to not to try and answer that question - unless it makes a pleasant philosophical distraction; maybe just move on and take the good bits or 'wins' and mentally, actively, step away from the bits that are daunting.
If I've understood correctly is it this Thurs you've got your Endo appointment? 
Best wishes.


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## EmmaL76 (Mar 7, 2022)

Thank you for the encouragement, well it’s funny you should ask as I’ve just been going through my appointment confirmation email and happened to notice the date as tomorrow the 8th!! The receptionist said next Thursday on the phone so good job I checked.


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## Inka (Mar 7, 2022)

EmmaL76 said:


> Thankyou for your message. I’m still hanging in there just by a tiny thread. A lady I used to work with talked me through that technique a while back, I have tried lots of things. She also told me to sit at a window and take everything in, now I have these French doors in my bedroom and rolling fields as a view so it couldn’t be more ideal but my mind carries on racing. Once my therapist at the time was trying to do some kind of reversal technique where you replay a traumatic event like a video but add bits or change them. I think I was supposed to be in some kind of hypnotic state, I made out I was, but really I was thinking that I needed to go to the shop on the way home for lunchbox snacks! For someone often called an airhead in my youth I have terrible trouble emptying my mind



No need to empty your mind to meditate (otherwise I’d never be able to do it!)  You can sit and concentrate on your breathing. When thoughts and feelings appear, observe them ‘from the outside’ and let them go. This is often described as watching clouds scud across the sky, which I think describes it perfectly. Your breathing is your centre, and you can just watch the ‘clouds’ pass by in a detached way.

Good luck with your appointment. You know you have all of us sending you positive thoughts. X


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## AndBreathe (Mar 7, 2022)

EmmaL76 said:


> Thank you for the encouragement, well it’s funny you should ask as I’ve just been going through my appointment confirmation email and happened to notice the date as tomorrow the 8th!! The receptionist said next Thursday on the phone so good job I checked.


Good luck tomorrow, Emma.

If there's any resistance, or "can't do that", then ask for him/her to explain exactly what the blocker is.  For me, it's really important to understand stuff, and that means the why nots as well as the why you shoulds.


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## EmmaL76 (Mar 8, 2022)

Inka said:


> No need to empty your mind to meditate (otherwise I’d never be able to do it!)  You can sit and concentrate on your breathing. When thoughts and feelings appear, observe them ‘from the outside’ and let them go. This is often described as watching clouds scud across the sky, which I think describes it perfectly. Your breathing is your centre, and you can just watch the ‘clouds’ pass by in a detached way.
> 
> Good luck with your appointment. You know you have all of us sending you positive thoughts. X


Thankyou so much inka, I’m going to try my best to stay relaxed and I will report back later xx


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## EmmaL76 (Mar 8, 2022)

AndBreathe said:


> Good luck tomorrow, Emma.
> 
> If there's any resistance, or "can't do that", then ask for him/her to explain exactly what the blocker is.  For me, it's really important to understand stuff, and that means the why nots as well as the why you shoulds.


I think he will take one look at me and realise I am a desperate woman and hopefully he can help me, I’m trying to quieten down the part of my brain that is saying.. what if he can’t help? What if I’m stuck like this forever?


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## rebrascora (Mar 8, 2022)

Thinking of you and hoping it goes well today. XX (((HUGS)))


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## EmmaL76 (Mar 8, 2022)

Appointment went well. The endo was great and very knowledgable although he did admit he’s never come a case quite like mine before. I had to resist rolling my eyes! So the long and short of it is I could still be any type of diabetic, although my anemia could have raised my hba1c I am definitely diabetic. So he’s set about getting to the bottom of it. Today I have had blood c peptide and he has redone all my antibody testing. He said on paper His best guess would be a particular type of MODY which usually appears during pregnancy (when my issues started) and the fact that it’s been coming and going for years would also point to this however it is rare (I wanna say glycogenic MODY I think that’s what he said) also I don’t have family with the gene but that didn’t seem to put him off the idea. So he has organised for the MODY team to carry out investigations. He said that MODY would be most likely to for my symptoms, could still be type 2 but not by the normal means but he actually thinks that type 1 is unlikely and is confident I shouldn’t take insulin, but he has asked for me to increase my carb intake to 70g from 30g and If my sugars get uncomfortably high then take a couple of units of fast acting. He also checked me for muscle wastage which is a bit borderline so has advised testing ketones which I don’t usually do. I was surprised he didn’t ask me to increase carbs more (but relieved) he said the human body can function quite well on 70gs so that made me feel a little better . So now I wait, but at least I’m a bit further forward xx


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## gll (Mar 8, 2022)

if i could spam care more than once I would xxx


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## Leadinglights (Mar 8, 2022)

EmmaL76 said:


> Appointment went well. The endo was great and very knowledgable although he did admit he’s never come a case quite like mine before. I had to resist rolling my eyes! So the long and short of it is I could still be any type of diabetic, although my anemia could have raised my hba1c I am definitely diabetic. So he’s set about getting to the bottom of it. Today I have had blood c peptide and he has redone all my antibody testing. He said on paper His best guess would be a particular type of MODY which usually appears during pregnancy (when my issues started) and the fact that it’s been coming and going for years would also point to this however it is rare (I wanna say glycogenic MODY I think that’s what he said) also I don’t have family with the gene but that didn’t seem to put him off the idea. So he has organised for the MODY team to carry out investigations. He said that MODY would be most likely to for my symptoms, could still be type 2 but not by the normal means but he actually thinks that type 1 is unlikely and is confident I shouldn’t take insulin, but he has asked for me to increase my carb intake to 70g from 30g and If my sugars get uncomfortably high then take a couple of units of fast acting. He also checked me for muscle wastage which is a bit borderline so has advised testing ketones which I don’t usually do. I was surprised he didn’t ask me to increase carbs more (but relieved) he said the human body can function quite well on 70gs so that made me feel a little better . So now I wait, but at least I’m a bit further forward xx


That sound very positive and if he is anything like my daughter an 'unusual' case will challenge him to find a solution for personal satisfaction.


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## janw (Mar 8, 2022)

Watching from a distance but sending you hugs and hopes for a more promising result this time. I hope his keenness to get to the bottom of this will help put your mind at rest and give you a much needed break.  x


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## AndBreathe (Mar 8, 2022)

EmmaL76 said:


> Appointment went well. The endo was great and very knowledgable although he did admit he’s never come a case quite like mine before. I had to resist rolling my eyes! So the long and short of it is I could still be any type of diabetic, although my anemia could have raised my hba1c I am definitely diabetic. So he’s set about getting to the bottom of it. Today I have had blood c peptide and he has redone all my antibody testing. He said on paper His best guess would be a particular type of MODY which usually appears during pregnancy (when my issues started) and the fact that it’s been coming and going for years would also point to this however it is rare (I wanna say glycogenic MODY I think that’s what he said) also I don’t have family with the gene but that didn’t seem to put him off the idea. So he has organised for the MODY team to carry out investigations. He said that MODY would be most likely to for my symptoms, could still be type 2 but not by the normal means but he actually thinks that type 1 is unlikely and is confident I shouldn’t take insulin, but he has asked for me to increase my carb intake to 70g from 30g and If my sugars get uncomfortably high then take a couple of units of fast acting. He also checked me for muscle wastage which is a bit borderline so has advised testing ketones which I don’t usually do. I was surprised he didn’t ask me to increase carbs more (but relieved) he said the human body can function quite well on 70gs so that made me feel a little better . So now I wait, but at least I’m a bit further forward xx



Engaging with someone honest (...."I haven't encountered this before....") AND willing to lift the lid to investigate is a massive step in the right direction.

I'm so pleased for you.  Are you scheduled to see him again?


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## EmmaL76 (Mar 8, 2022)

AndBreathe said:


> Engaging with someone honest (...."I haven't encountered this before....") AND willing to lift the lid to investigate is a massive step in the right direction.
> 
> I'm so pleased for you.  Are you scheduled to see him again?


He said he would contact me with my results and take it from there. I was quite happy with my treatment. Although I did pay for the appointment today, I’m not paying for all the testing


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## EmmaL76 (Mar 8, 2022)

Leadinglights said:


> That sound very positive and if he is anything like my daughter an 'unusual' case will challenge him to find a solution for personal satisfaction.


Yes he did seem to get the bit between his teeth so to speak lol


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## EmmaL76 (Mar 8, 2022)

janw said:


> Watching from a distance but sending you hugs and hopes for a more promising result this time. I hope his keenness to get to the bottom of this will help put your mind at rest and give you a much needed break.  x


Ahh Thankyou so much. I am worried that it will come to a dead end again but at least everything that can be done is now being done xx


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## Inka (Mar 8, 2022)

He sounds very thorough @EmmaL76 I’m so pleased the appointment went well. Stay positive - this one sounds like a keen sleuth, so hopefully you’ll have some answers. XX


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## AndBreathe (Mar 9, 2022)

EmmaL76 said:


> He said he would contact me with my results and take it from there. I was quite happy with my treatment. Although I did pay for the appointment today, I’m not paying for all the testing



When I have paid for consultations, I tend to look on them as investments, rather than bills.

My Endo asked my GP to order up about 50 (I kid you not) tests when I first encountered him - mainly due to the very significant number of autoimmune conditions in my immediate family.  He was certain I'd have something.  Nope.

I feel very fortunate to have him on my side.  When I see him, he always asks what else is going on in my life too.  Of course, he's not riveted by the frippery of my day to day life, but I feel he's more asking about any stressors, or excitement going on that could impact my health.

I've recently had a letter moving my May review to October.  The letter was followed a few days later by a call from his secretary to ensure I had enough medication to last, or organise a script.  It feels like that's how it should be.

Hopefully, you've also got a keeper.


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