Can you help us improve the info we give people at T2 diagnosis?

[Nayshiftin]

I’m just thankful to have found this forum as it has helped to have other people who have been through this and understand how isolating and scary this can all be.

That is it “isolating and scary”. It does not seem to be something one can control.
Type one seem to test and alter all the time hit n miss unless very stable. Type 2 some of you win but like me its still out there. Yes I have improved but I'm not stable yet.
There should be no blame it freaks me out.

 

[Sarahp]

There’s so much to diabetes than people ever understand. Remember, diabetes isn’t a body type. It isn’t a lifestyle or a result of a poor lifestyle. You’re right that there’s often a lot more genetic factors that people are only just finding out about.

I’m just thankful to have found this forum as it has helped to have other people who have been through this and understand how isolating and scary this can all be.

Could not agree more re this forum!

 

[SacrificedSin87]

That is it “isolating and scary”. It does not seem to be something one can control.
Type one seem to test and alter all the time hit n miss unless very stable. Type 2 some of you win but like me its still out there. Yes I have improved but I'm not stable yet.
There should be no blame it freaks me out.

Then there’s some of us who they’re still not sure on. My doctor said that it’s steroid induced but it acts like type 1 and the medicine for type 2 didn’t do very much so I was put on basal/bolus insulin injections. Since starting the injections, it’s been better, still titrating to get the doses right but it gets better every day.

My nurse told me that it can sometimes take time to get your treatment right and that you need to just be patient with it and trust the process. But also, remember to be patient and kind to yourself too, some days you may feel better than others but that’s why we have to keep trying.

 

[brettr]

I think that sometimes patients aren’t given the right information from their doctor to begin with. When I was told that I was diabetic, all I was told was “here, have metformin, eat less than 50g sugar a day and you’ll be fine. No need to monitor or anything. Just metformin.”

It was only when I got to speak to the diabetic specialist nurse (who is an absolute saint) that we managed to go through every single thing, from diet and carbs to being offered insulin and monitoring as I’m on so many other medications and have to take daily oral steroids as a matter of routine. My diabetic nurse has been amazing about it all and helped me make positive changes and guided me through the process.

The other thing I have noticed is that there is a stigma around type 2 and certain lifestyle choices. It’s not right. And it’s not fair. No one asks for an illness and they should never be made to feel ashamed of it.

I have to agree with you so much. My own Doctor basically sent me on my way, had to make my own appointment with the diabetic nurse, still felt no better, we had the talk about eating less of everything and being careful with everything else I can't eat, but was basically left to my own devices as to find out what the hell to do with learning to cope with T2.

I don't know if I am being horrible here, but the diabetic nurses at my surgery, I expected them to give me a lot more information on how to cope and deal with my T2 diabetes, better meal idea's, more information on the medications available etc.

One thing I have noticed since being diagnosed is that there are no groups for T2 diabetics to join to chat about our condition, nor is there enough information coming from the NHS about how we deal with T2 to make the condition easier to live with. I know we have this site, which is a godsend in itself. I would feel lost if I could not come on here to vent sometimes or just ask relevant questions.

 

[SacrificedSin87]

I have to agree with you so much. My own Doctor basically sent me on my way, had to make my own appointment with the diabetic nurse, still felt no better, we had the talk about eating less of everything and being careful with everything else I can't eat, but was basically left to my own devices as to find out what the hell to do with learning to cope with T2.

I don't know if I am being horrible here, but the diabetic nurses at my surgery, I expected them to give me a lot more information on how to cope and deal with my T2 diabetes, better meal idea's, more information on the medications available etc.

One thing I have noticed since being diagnosed is that there are no groups for T2 diabetics to join to chat about our condition, nor is there enough information coming from the NHS about how we deal with T2 to make the condition easier to live with. I know we have this site, which is a godsend in itself. I would feel lost if I could not come on here to vent sometimes or just ask relevant questions.

I think there’s this kind of attitude that T2 is self inflicted and all some teams just try to keep you on either diet and/or medications and the lack of monitoring is just shocking. Not related but when I started on cpap for sleep apnea, the nurses were better in that as well, all I got told by the doctor was “lose weight, if you weren’t so fat you’d be fine”. I’ve since lost a lot of weight but my SA remains as it is. I initially brought my own glucose monitor. I too had to arrange my own nurse appointment. I guess I was lucky that when we did finally get to chat, she looked at everything. She was actually surprised how little care and support the doctor gave me and said that as I’m on steroids, I really did need to be monitored and that insulin is a better treatment.

I think we are lucky to have a site like this where we can talk with and understand others in the same boat.

 

[Sarahp]

I have to agree with you so much. My own Doctor basically sent me on my way, had to make my own appointment with the diabetic nurse, still felt no better, we had the talk about eating less of everything and being careful with everything else I can't eat, but was basically left to my own devices as to find out what the hell to do with learning to cope with T2.

I don't know if I am being horrible here, but the diabetic nurses at my surgery, I expected them to give me a lot more information on how to cope and deal with my T2 diabetes, better meal idea's, more information on the medications available etc.

One thing I have noticed since being diagnosed is that there are no groups for T2 diabetics to join to chat about our condition, nor is there enough information coming from the NHS about how we deal with T2 to make the condition easier to live with. I know we have this site, which is a godsend in itself. I would feel lost if I could not come on here to vent sometimes or just ask relevant questions.

Very similar experience here too until I joined my current surgery, I was expected until that point to be self informed even though they knew I had a eating disorder.
Since joining DUk as a member I have become much better informed and didn’t even know until recently that DUk have regional offices and there are local support groups around through them for members, one is virtual at the moment but might be worth talking to your local office to seek what is happening near you, there is a list of the offices on the website, if you struggle to find it let me know. Also the learning zone is a god send for information and updates.

 

[Nayshiftin]

My practice has become increasingly better so something is feeding through . Or maybe that I have took control As others have said .
“since joining DUK as a member” its so much easier.
Thank you all and I mean it the support has kept me alive through rough times.
I am feeling better now and going on .

 

[everydayupsanddowns]

Thank you all and I mean it the support has kept me alive through rough times.
I am feeling better now and going on .

So glad to hear it @Nayshiftin

Long may you continue to feel better. 🙂

 

[Nayshiftin]

So glad to hear it @Nayshiftin

Long may you continue to feel better. 🙂

Thank you