I need help

[EmmaL76]

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

 

[EmmaL76]

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

 

[EmmaL76]

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

 

[Lily123]

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

 

[Lily123]

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!

 

[Elenka_HM]

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.

 

[Lucyr]

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.

 

[EmmaL76]

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.

 

[Lucyr]

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?

 

[Andy777]

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.

 

[Mrs Mimoo]

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.

 

[Inka]

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

 

[ColinUK]

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.

 

[ColinUK]

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.

 

[ColinUK]

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.

 

[EmmaL76]

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

 

[gll]

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

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

 

[EmmaL76]

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

 

[Proud to be erratic]

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.

 

[Inka]

@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