Any diabeties in the lincoln area, im realy mad right now

[Sara Grice]

I just tried to contact my diabties team for the frist time this month....and I got a different automated message that says you can leave a message but there was no mention of getting a call-back, instead they said you can email us...

I am like fairly sure this means they have stopped doing call-backs and the only way I can get in contact with a diabties clinician is through email...I think this realy shocking, how can they effectively help me manage my diabeties though email only.... I wasn't made aware of this change and I definitely want to speak to PALS about this

Normaly when call outside of opening hours I get a "sorry our phones are nor open right now, please ring during *insert time here" so it isn't the fact they changed the time they open there phones front 8 to 9....they just don't want to talk to patients at all it seams..

 

[Sara Grice]

Update: just sent an email to the email on the voice message and It couldn't be sent
Your message wasn't delivered to *email here* because the address couldn't be found or is unable to receive email.
So i have no idea whats going on and how I'm supposed to contact my diabties team

 

[rebrascora]

I have never been able to speak to anyone at our diabetes clinic directly via a phone call in the 6 years I have been diagnosed, nor is there an email address. There is a helpline where you can ring and leave a message and they ring back in a couple of days or so but it is mostly for serious issues like repetitive hypos etc.

The clinics are simply too busy to have someone available to answer the phone.

I have gained most of the knowledge and support I need from this forum and I have found some of the people here more knowledgeable in many respects than the medical staff because they live with diabetes day in and day out and that practical experience can be more helpful than the theory that nurses have to work on. I read about their experiences here on the forum and then see how I can apply that to my own situation and that usually involves a bit of careful experimentation on my part to see what works well and what doesn't.

 

[Sara Grice]

I have never been able to speak to anyone at our diabetes clinic directly via a phone call in the 6 years I have been diagnosed, nor is there an email address. There is a helpline where you can ring and leave a message and they ring back in a couple of days or so but it is mostly for serious issues like repetitive hypos etc.

The clinics are simply too busy to have someone available to answer the phone.

I have gained most of the knowledge and support I need from this forum and I have found some of the people here more knowledgeable in many respects than the medical staff because they live with diabetes day in and day out and that practical experience can be more helpful than the theory that nurses have to work on. I read about their experiences here on the forum and then see how I can apply that to my own situation and that usually involves a bit of careful experimentation on my part to see what works well and what doesn't.

Yeah actuly, fair to you, you are right. I was just basically told the same thing..

After jumping through a enormas amount of hoops I got though to the secretary of the diabeties team, she told me they have temporarily stopped doing non emergency call-backs due to lack of staff. I have managed to get on the list for this afternoon but i feel bad that my issue is genraly just anxiety and burnout as mentioned in my last post.
I guess I just kind of envisioned it to be a bit more of a level of support, since I can't seem to get anything from anywhere apart from here (which is good but like..is it really a replacement for talking to a nurse from time to time)
I guess I just have to accept the fact it's not the kind of thing I thought it was, and that I have to get better as looking after myself, it's hard though when I feel so stressed and down (I am on the waiting list for the nsh therapy service btw..so at ill have that..eventually)

It's funny you mention experimentation and trying things out, cos I feel that's where my burnout has come from, it feels like never ending trial and error. Trying new things that never seam to quite work, so I'm back to sqare one. Like I'm at the point where I'm running of ideas apart from trying a new sensor type (which I feel has more cons than the one I'm using now) or no sensor at all which scares me to absolute death

I've not realy felt "good" or "in control" of my diabeties since before last Christmas. I mean my levels where ok, but I just felt like it had to take over my life for that, and in the past few days my control over my levels are starting to slip, but then again I'm not sure how much of that is because I suspect this sensor is reading higher that my actual levels.

This is all so hard

 

[Thebearcametoo]

The difference between adult diagnosis and paeds diagnosis is like night and day. With our child we got weeks of support and training at the beginning from specialist nurse, dietician and a doctor. Now that we’re settled we have clinic 4 times a year and have access via email or phone during the week plus an out of hours number for emergencies. And we have access to a psychologist.

Obviously there are challenges with kids as they grow so there are more expected changes to ratios etc especially during puberty but it’s shocking that adults don’t get the same support and information we do. The perception that type 1 is a childhood disease does so much harm when so many adults get diagnosed.

 

[Sara Grice]

The difference between adult diagnosis and paeds diagnosis is like night and day. With our child we got weeks of support and training at the beginning from specialist nurse, dietician and a doctor. Now that we’re settled we have clinic 4 times a year and have access via email or phone during the week plus an out of hours number for emergencies. And we have access to a psychologist.

Obviously there are challenges with kids as they grow so there are more expected changes to ratios etc especially during puberty but it’s shocking that adults don’t get the same support and information we do. The perception that type 1 is a childhood disease does so much harm when so many adults get diagnosed.

I definitely agree, I do feel a bit like I have no official place to turn to. Especially I struggle with anxiety anyway, during covid was rough, I dread to think how I would have coped if I have had my diagnosis back then. The fact I live alone also makes me feel very vulnerable
All I can do is wait till the waiting list goes down for therapy I guess.
I do hope mods and everyone on this forum don't mind be venting my frustrations occasionally here like I do, I would hate be come across as annoying..this is the most welcoming place I've found and I would hate to lose it.

 

[trophywench]

Mate - almost all of us use the forum to have a damn good moan from time to time. No reason whatever that you can't!

 

[Sara Grice]

Mate - almost all of us use the forum to have a damn good moan from time to time. No reason whatever that you can't!

Haha thanks that's good to hear, other sites never felt as welcoming. But it's been amazing here. And I am actuly feeling alot better. I had a chat with one of the nurses and she basicly explained to me how emails would be the ideal way if I just need an answer for a question or to ask about how I'm doing, they get answered every day like the calls and that way I don't have to spend most of the day just waiting for a call back, I could call others without worrying I'm gonna miss the call back.

She also told me that about half an hour of leaving the lid off my testing strips wouldnt have effected them unless it was humid in my house, so i can still trust my fingers. So that did help. She also says that while I've had a few higher peaks than I did before my levels are still ok and she isn't concerned so just keep doing what I'm doing. So overall my stress levels are much better than yesterdays and this morning.

So yeah, thanks for everyone to reached out. It makes all the difference. It's tough and takes alot of mental strength but it doesn't seem as overwelmbing as it has been. Hope everyone else is having a good day aswell, and if your not, take it from me the universe won't ever give you stuff you can't handle.

 

[Woodywoodpecker]

I definitely agree, I do feel a bit like I have no official place to turn to. Especially I struggle with anxiety anyway, during covid was rough, I dread to think how I would have coped if I have had my diagnosis back then. The fact I live alone also makes me feel very vulnerable
All I can do is wait till the waiting list goes down for therapy I guess.
I do hope mods and everyone on this forum don't mind be venting my frustrations occasionally here like I do, I would hate be come across as annoying..this is the most welcoming place I've found and I would hate to lose it.

I had seven appointments at hospital when first diagnosed 6 with diabetic nurse every Monday, then one with doctor couple off weeks later, then another 2 with doctor 3 months, next one September for yearly check. Can phone Monday to Friday and get call back, to be honest most are luvly but got one that wznt so nice, she actually made me cry. I found this forum was a bit hesitant at first as never been in one before, but to be honest since I’ve come on here I’ve never phoned them again. I was like you in the beginning couldn’t get anything right, still don’t at times but that’s ok. I’m gaining confidence every day with it all. Just be kind to urself, don’t overthink everything because it won’t do your mental health any good. In Scotland so Mibi help is different here

 

[Woodywoodpecker]

Haha thanks that's good to hear, other sites never felt as welcoming. But it's been amazing here. And I am actuly feeling alot better. I had a chat with one of the nurses and she basicly explained to me how emails would be the ideal way if I just need an answer for a question or to ask about how I'm doing, they get answered every day like the calls and that way I don't have to spend most of the day just waiting for a call back, I could call others without worrying I'm gonna miss the call back.

She also told me that about half an hour of leaving the lid off my testing strips wouldnt have effected them unless it was humid in my house, so i can still trust my fingers. So that did help. She also says that while I've had a few higher peaks than I did before my levels are still ok and she isn't concerned so just keep doing what I'm doing. So overall my stress levels are much better than yesterdays and this morning.

So yeah, thanks for everyone to reached out. It makes all the difference. It's tough and takes alot of mental strength but it doesn't seem as overwelmbing as it has been. Hope everyone else is having a good day aswell, and if your not, take it from me the universe won't ever give you stuff you can't handle.

Pleased your feeling better with it all, always someone here to help

 

[helli]

I've not realy felt "good" or "in control" of my diabeties since before last Christmas. I mean my levels where ok, but I just felt like it had to take over my life for that, and in the past few days my control over my levels are starting to slip

I try not to talk or think about controlling diabetes. There are too many things I cannot control which can affect my BG.
I try to manage my diabetes. It may seem like just a different word but it helps my mental health knowing my BG does not have to be perfect.
I think of it like trying to control a class of thirty 4 year olds all of the time. No matter how entertained I can keep them, it still wouldn't stop little Johnny wetting himself, starting to cry and setting off others.
Diabetes is the same, it is not my fault when I get ill or stressed or need to run for a bus or miscalculate my insulin or be called into a work emergency just after I bolus but before i finish my lunch. These can all affect my BG. So I chose to feel no guilt when it happens.

 

[Sara Grice]

I try not to talk or think about controlling diabetes. There are too many things I cannot control which can affect my BG.
I try to manage my diabetes. It may seem like just a different word but it helps my mental health knowing my BG does not have to be perfect.
I think of it like trying to control a class of thirty 4 year olds all of the time. No matter how entertained I can keep them, it still wouldn't stop little Johnny wetting himself, starting to cry and setting off others.
Diabetes is the same, it is not my fault when I get ill or stressed or need to run for a bus or miscalculate my insulin or be called into a work emergency just after I bolus but before i finish my lunch. These can all affect my BG. So I chose to feel no guilt when it happens.

That is a fun way to look at it.
There is realy alot out there that can effect your BG levels, my doctor wants me to start on vitamin D supplements and I do wonder if that is something I may need to keep in mind, I know some other vitamins can, But I mean looking at the last bloodtest I had considering I'm only 5 months into this I've already got my Ac1 down to 57 Mmol/mol when I was at 80 at my time of diagnosis. So I need to focus on the progress I've made compared to all the negatives that happen day to day

 

[trophywench]

Accept the Vit D.

 

[paultrose]

Im impressed you actually have a diabetes team!

I got nothing

 

[Lucyr]

I don’t really see the point of trying to get a callback from the diabetes team to be honest.

Are you having too many highs, lows, or are your bgs about right? If highs they’ll tell you to increase insulin, if lows they’ll say reduce insulin, then it’s just a matter of deciding which one.

I think most of us should be able to work out that highs need more insulin and lows need less for ourselves? I know getting good bgs isn’t that simple but DSNs aren’t magicians, they can’t advise any more than putting insulin cautiously up or down in most cases