No support

[Meghalton]

Hi all! I just wanted to rant about how I feel no support for my diabetes is given by nurses or doctors. Maybe this is just because I am seeing the wrong medical staff, but sometimes I feel I know more then them. Feeling very low.

 

[Jamrox]

Hi Meghalton , are you type 1 or 2.?
Are you on medication?

I am type 2 diet controlled and have to admit that I haven't had a lot of support either . I get all the info and support from DCUK. I always justify this by thinking that the limited resources there are available are probably better spent on type 1 or type 2 on medication .
Then I think that if they gave type 2 diet controlled diabetics more support and advice re reducing carbs and moving more then that may reduce the number of type 2s on medication.
Hope that makes sense.

My only advice is read the posts on the DCUK forum , you will find great advice and loads of support

 

[azure]

I just wanted to write up a message to rant about how unsupported I feel by the nurses and doctors I see for my diabetes. I'm not sure whether it's just because I'm seeing the wrong medical staff, but sometimes I feel I know more about diabetes then they do. Feeling very low.

I think often staff have limited time - not that that's an excuse if you need help. Do you have a DSN you can phone? I often find a phone call to the right person gets me more advice than a routine appointment.

Is there anything in particular you want support with and feel they're not giving you?

 

[tim2000s]

Hi @Meghalton , who have you been seeing and what were your concerns? Many of us have had similar experiences so it would help to share yours as @azure has suggested.

 

[Snapsy]

Hi @Meghalton , sorry you're feeling low.

I can reassure you on one point - and I'm hoping you'll feel empowered - yes you almost certainly DO know more about your diabetes than they do. I'm not casting aspersions on your diabetes teams' qualifications, training or experience in the field, but as a first-hand all-day-every-day person with diabetes you know and feel things about diabetes that they have no first-hand experience of. It's upsetting though that you're not getting the support you need - that's not how these things should work.

Maybe as @azure suggests you could have a chat with a DSN, and voice your concerns. Living with diabetes is what I'd consider a team effort (I count my husband, family, my DSN and the Accucheck helpline staff as core members of my team!) and it sounds as if the doctors and nurses you see for your diabetes perhaps need to be more considerate members of yours!

 

[Wurst]

In what way are you not being supported ? I had no support from my diabetic team when I was low carbing , they were constantly berating me for following the LHCF diet and pointing out it could have a detrimental effect on kidney function and cholesterol. Thinking I knew everything about diabetes and I was right and they were wrong , I completely ignored their advice and often argued with them. 3 years into LHCF , I had seriously elevated LDL and reduced kidney function. Egg on my face or what? I got a big helping of 'I told you so' :-0

 

[Meghalton]

In what way are you not being supported ? I had no support from my diabetic team when I was low carbing , they were constantly berating me for following the LHCF diet and pointing out it could have a detrimental effect on kidney function and cholesterol. Thinking I knew everything about diabetes and I was right and they were wrong , I completely ignored their advice and often argued with them. 3 years into LHCF , I had seriously elevated LDL and reduced kidney function. Egg on my face or what? I got a big helping of 'I told you so' :-0

Hi @Meghalton , sorry you're feeling low.

I can reassure you on one point - and I'm hoping you'll feel empowered - yes you almost certainly DO know more about your diabetes than they do. I'm not casting aspersions on your diabetes teams' qualifications, training or experience in the field, but as a first-hand all-day-every-day person with diabetes you know and feel things about diabetes that they have no first-hand experience of. It's upsetting though that you're not getting the support you need - that's not how these things should work.

Maybe as @azure suggests you could have a chat with a DSN, and voice your concerns. Living with diabetes is what I'd consider a team effort (I count my husband, family, my DSN and the Accucheck helpline staff as core members of my team!) and it sounds as if the doctors and nurses you see for your diabetes perhaps need to be more considerate members of yours!

Hi @Meghalton , who have you been seeing and what were your concerns? Many of us have had similar experiences so it would help to share yours as @azure has suggested.

I think often staff have limited time - not that that's an excuse if you need help. Do you have a DSN you can phone? I often find a phone call to the right person gets me more advice than a routine appointment.

Is there anything in particular you want support with and feel they're not giving you?

Hi Meghalton , are you type 1 or 2.?
Are you on medication?

I am type 2 diet controlled and have to admit that I haven't had a lot of support either . I get all the info and support from DCUK. I always justify this by thinking that the limited resources there are available are probably better spent on type 1 or type 2 on medication .
Then I think that if they gave type 2 diet controlled diabetics more support and advice re reducing carbs and moving more then that may reduce the number of type 2s on medication.
Hope that makes sense.

My only advice is read the posts on the DCUK forum , you will find great advice and loads of support

Thanks for all of the comments, I am a Type 1 diabetic and have been for 17 years. My main concern is I want to go back on the pump and no one seems to know anything about them. I've moved to a new location and the doctors are no good. In my past experience I have also had bad doctors at the hospital. Sometimes you find a good nurse but as I've change to somewhere new I have not found them. I just want advice on the pump and support, as I really struggled wit it before.
What is DSN?! And I didn't know about support lines. I am just feeling so down in life and feel like I am trying to motivate myself with diabetes but it's hard when I'm already depressed. I just wish I could have one day off being a diabetic, as I'm sure you all do. X

 

[noblehead]

Sorry to hear that Meg, are you under the care of gp surgery or a hospital diabetes clinic?

 

[Type1Lad]

hey meg it's hard but are you with the drs or hospital i found the drs are okay for yearly review ect but other then that i'm seen at the hospital for consultations and everything else although i dislike my consultant for saying a pump wouldn't benefit me how would he know? I'm now happy that im on a pump and will prove to him everything is much better.

 

[Snapsy]

Hi again @Meghalton , I'd suggest you have a look at INPUT (http://www.inputdiabetes.org.uk) and also have a chat with your GP to ask to be referred to a pump-sympathetic clinic.

DSN is Diabetes Specialist Nurse. My hospital, as well as having diabetes review appointments in the main outpatients clinic, has a specific 'Diabetes Centre', and most of the staff there are very clued-up - I struggled for a while with them, but my DSN now is absolutely smashing.

Don't be despondent - you say you're new to the area so perhaps you just haven't met the 'right' person, yet.

I'm definitely on your wavelength in that my dearest wish is also for a day off from diabetes! What would you do with yours? For me it wouldn't mean a licence to eat cake or drink one of those coffee-shop hot chocolates with 26 spoonfuls of sugar that made the news last week - it would mean just being able to get on with a normal normal normal normal normal normal day without having to think about diabetes at all! But as I can't, I'm just trying my very best to minimise the impact of it on my life. Which as you know, is very, very difficult. And oh boy I have bad days too, so I really do feel for you.

Grit your teeth, get onto your GP, do some research online as to which hospital might be favourable to pumps, and go for it! I'd been wanting a pump for years, and it was only when I actually managed - after YEARS - to pluck up the courage to ask them straight out about having one that the wheels (slowly) started turning.

Hang on in there. You can get through this.

 

[Meghalton]

hey meg it's hard but are you with the drs or hospital i found the drs are okay for yearly review ect but other then that i'm seen at the hospital for consultations and everything else although i dislike my consultant for saying a pump wouldn't benefit me how would he know? I'm now happy that im on a pump and will prove to him everything is much better.

Hi again @Meghalton , I'd suggest you have a look at INPUT (http://www.inputdiabetes.org.uk) and also have a chat with your GP to ask to be referred to a pump-sympathetic clinic.

DSN is Diabetes Specialist Nurse. My hospital, as well as having diabetes review appointments in the main outpatients clinic, has a specific 'Diabetes Centre', and most of the staff there are very clued-up - I struggled for a while with them, but my DSN now is absolutely smashing.

Don't be despondent - you say you're new to the area so perhaps you just haven't met the 'right' person, yet.

I'm definitely on your wavelength in that my dearest wish is also for a day off from diabetes! What would you do with yours? For me it wouldn't mean a licence to eat cake or drink one of those coffee-shop hot chocolates with 26 spoonfuls of sugar that made the news last week - it would mean just being able to get on with a normal normal normal normal normal normal day without having to think about diabetes at all! But as I can't, I'm just trying my very best to minimise the impact of it on my life. Which as you know, is very, very difficult. And oh boy I have bad days too, so I really do feel for you.

Grit your teeth, get onto your GP, do some research online as to which hospital might be favourable to pumps, and go for it! I'd been wanting a pump for years, and it was only when I actually managed - after YEARS - to pluck up the courage to ask them straight out about having one that the wheels (slowly) started turning.

Hang on in there. You can get through this.

I told my nurse at the gps that I want to talk about pumps and she doesn't know so much so has sent me to hospital, but getting the right appointment was a struggle. I rang the hospital just to double check if they are specialists in pumps but they had no clue. I have my appointment coming up so I am praying that there will be great support there.
I'm not sure what I would do with my day off but I recon I would be just like you- not eating loads of sugar but embracing the day without injections and blood pricks!
I have been on the pump and I really struggled. So I almost feel like both injections and the pump aren't right for me. I'm trying to stay positive but I am so down it seems hard to be motivated.

Have either of you got a pump that is wireless?! I'm quite interested in that! Xxxx

 

[Snapsy]

Great that you've got an appointment coming up - you might be (and I hope you are!) pleasantly surprised. Hope they're helpful.

It might be that pumps - and approaches to pumping - are different now - how long ago was it that you were on a pump?

Mine's not wireless - I thought I really wanted an Omnipod but I am very happy indeed with my Insight. It's very comfortable to wear in one of these - http://www.hid-in.com/shop/multiway-body-band - I have mine positioned just under where my bra sits - and the tubing of the pump doesn't bother me at all. During the week I swim every day, and am very happy to just unplug it from the cannula, cap off the cannula, swim and then clip it back on afterwards. Job done.

I don't generally trip over the 'hosepipe', as I call it, and I don't bother taping it down any more (I did to start with as I was paranoid I'd yank it out - which hasn't happened so that's fine) and apart from a few (I gather, normal) teething problems I've been extremely happy with it.

 

[Type1Lad]

hey grate news u have a right to go a pump specialist hospital here's a link to read up on http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/

 

[Meghalton]

Great that you've got an appointment coming up - you might be (and I hope you are!) pleasantly surprised. Hope they're helpful.

It might be that pumps - and approaches to pumping - are different now - how long ago was it that you were on a pump?

Mine's not wireless - I thought I really wanted an Omnipod but I am very happy indeed with my Insight. It's very comfortable to wear in one of these - http://www.hid-in.com/shop/multiway-body-band - I have mine positioned just under where my bra sits - and the tubing of the pump doesn't bother me at all. During the week I swim every day, and am very happy to just unplug it from the cannula, cap off the cannula, swim and then clip it back on afterwards. Job done.

I don't generally trip over the 'hosepipe', as I call it, and I don't bother taping it down any more (I did to start with as I was paranoid I'd yank it out - which hasn't happened so that's fine) and apart from a few (I gather, normal) teething problems I've been extremely happy with it.

Let's hope they are helpful!! I need support at the moment.
I had a pump about 4-5 years ago. Always got the wire caught on things. The pump caused major bruising. And I couldn't cope with the pump at that point in my life. I'd rather the wireless but am welcome to any ideas! I'll have a look at yours, will see if I like it!
As I just moved my family are in a different area and I only know my boyfriend and he is also depressed at the moment so I don't have much support. I just needed someone to help me!

 

[Meghalton]

hey grate news u have a right to go a pump specialist hospital here's a link to read up on http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/

Ooooohhh looks good, thank you xx

 

[azure]

Let's hope they are helpful!! I need support at the moment.
I had a pump about 4-5 years ago. Always got the wire caught on things. The pump caused major bruising. And I couldn't cope with the pump at that point in my life. I'd rather the wireless but am welcome to any ideas! I'll have a look at yours, will see if I like it!
As I just moved my family are in a different area and I only know my boyfriend and he is also depressed at the moment so I don't have much support. I just needed someone to help me!

I'm very clumsy and I have a pump with a wire (Animas Vibe). I got a lot of support when I first had my pump, including how to wear it and tuck in the wires, etc. You shouldn't have had bruising : ( Would that have been the sets hurting you?

Sorry you're feeling down. Don't let things get to,you. I've found I've had to push for things I want sometimes.

Just sending you a {{hug}} and I hope you feel more positive soon.

 

[Meghalton]

I'm very clumsy and I have a pump with a wire (Animas Vibe). I got a lot of support when I first had my pump, including how to wear it and tuck in the wires, etc. You shouldn't have had bruising : ( Would that have been the sets hurting you?

Sorry you're feeling down. Don't let things get to,you. I've found I've had to push for things I want sometimes.

Just sending you a {{hug}} and I hope you feel more positive soon.

I was very very thin and the pump was never in right. Lots of lumps and bruising. I was on an animas. I'm so clumsy too, so think wireless may be better. Although haven't found anyone who wears a wireless one so don't know if there any good!! I'm trying to stay happy but feel alone. I'm getting depressed with my diabetes and it's hard to stay motivated when you feel like that. Xx

 

[himtoo]

I was very very thin and the pump was never in right. Lots of lumps and bruising. I was on an animas. I'm so clumsy too, so think wireless may be better. Although haven't found anyone who wears a wireless one so don't know if there any good!! I'm trying to stay happy but feel alone. I'm getting depressed with my diabetes and it's hard to stay motivated when you feel like that. Xx

hi hun --please please don't be depressed --i would take it away for you or trade places if it could help but I know sadly all I can do is send my biggest [[hugs]] and support to you.
i am using an omnipod ( wireless) because i too am clumsy and didn't want wires to get in the way
The omnipod is brilliant - you don't really even know it is attached.

 

[azure]

I was very very thin and the pump was never in right. Lots of lumps and bruising. I was on an animas. I'm so clumsy too, so think wireless may be better. Although haven't found anyone who wears a wireless one so don't know if there any good!! I'm trying to stay happy but feel alone. I'm getting depressed with my diabetes and it's hard to stay motivated when you feel like that. Xx

Whatever pump you go for (if you decide to go for one), the sets are the key thing. I chose my pump as much on the sets that you can get for it as the pump itself. I'm not sure what choice you'd get if you had an Omnipod, but I found the sets Animas tried to get me to use with my Vibe weren't the best for me. So I chose my own.

It's also important where you put the sets. The only time I've had bruises was with my first pump when I used my tummy. Niw I use my thighs and bum and have never had a bruise using them. I'm slim too, so I think that makes a difference.

Diabetes can be depressing because it's there all day every day, but don't let it steal your enjoyment of life. I try to keep it in a box - control it and think about it when I need to, but not ponder over it or let it stress me. Think about all the good things in your life and don't dwell on the diabetes.

And you're not alone here There are lots of great people here who can help and support you

 

[himtoo]

taking up @azure 's point on sets -- the omnipod has no choice, it is a stainless steel inserter that leaves a teflon cannula in place for the 3 days at a 45 degree angle

hope that helps !!