Student nurse wishing to understand more about diabetes

[IsabellaWhite94]

Hello everyone my name is Issy and I am student nurse coming to the end of my second year of training. I am currently writing an essay about long term conditions and the affect this has on the individual and I decided to choose to write mine about Type 1 diabetes, however this is open and welcome to feedback from both type 1 and type 2 diabetic individuals as I would love to understand more about both. I was just wondering if anyone would be willing to share any information about how the physical effects of diabetes effect your life e.g. neuropathy, daily insulin injections, retinopathy, tiredness, hypo anxiety etc etc as this is one the of sections of my assignment and I would love to hear some feedback from people who actually have real life experiences of diabetes and I feel this information is most valuable. All information will be confidential and no names etc will be used in my assignment its more to just give me more of an insight into coping with diabetes.
Many thanks!
Issy -student nurse

 

[Ann1982]

Diabetes affects every individual differently which is probably the first thing you need to know. It can cause anxiety and stress on diagnosis and sometimes affects people for a long time after initial diagnosis. The time it takes to deal with diabetes can also affect people. There is the testing, the insulin injections the dealing with hypos, hypers, and everything else in between. Then there is the diet to deal with too. Many people have families who are either not understanding of the condition or uncaring in a certain respect so we have that to deal with too as well as friends and strangers who do not understand our needs. You have a lot to find out so best of luck!

 

[IsabellaWhite94]

Big thank you for your reply, all very useful information. May I ask, as I am part of the new generation of the NHS and wish to work alongside people to involve them in decision making and ensuring the best quality of life for my patients, do you feel nurses work positively with you in managing your diabetes or feel there is room for improvement in areas of care?

 

[Ann1982]

Big thank you for your reply, all very useful information. May I ask, as I am part of the new generation of the NHS and wish to work alongside people to involve them in decision making and ensuring the best quality of life for my patients, do you feel nurses work positively with you in managing your diabetes or feel there is room for improvement in areas of care?

There is room for improvement, overall I find my diabetes team good but there are some horror stories out there. After all it is our bodies and our life a bit more listening might be helpful.

 

[IsabellaWhite94]

Thank you very much for your help!

 

[purplepenguin]

Big thank you for your reply, all very useful information. May I ask, as I am part of the new generation of the NHS and wish to work alongside people to involve them in decision making and ensuring the best quality of life for my patients, do you feel nurses work positively with you in managing your diabetes or feel there is room for improvement in areas of care?

It is a lottery regarding the quality of doctors and nurses, and the understanding they have about diabetes. I am lucky that my nurse is fabulous and up to date on current thinking, e.g. low carb diet and she is very much allowing me to have a say in my treatment.
As for the physical aspects of dealing with diabetes, it is the chronic fatigue when sugars are not under control and having to still be 100% at work when you'd rather just curl up and sleep. Not to mention the stress of worrying you're going to catch a cold etc and see all the hard work to keep sugars normal go out of the window for the duration. Also, as a type 2 who has accepted that low carb is the only way for me, it is the realisation that there are just some things I will never be able to eat again, which will alienate me from certain situations. It's not just the physical effects but the mental effects too!
An HIV positive friend of mine said something once that has stuck with me, 'Having HIV is a case of popping some pills and pretty much forgetting about having it, diabetes is constantly thinking about it and knowing that everything and anything you do will affect you.' I'm not sure I completely agree with that but it did make me think twice.

My advice to you would be not to have preconceived ideas about Type 2 diabetics, we did not all get it by being lazy and greedy, and also to make sure you know that there is a very big difference between Type 1 and Type 2. Oh, and Type 2s REALLY MUST test several times a day and should stick to a low carb diet. Look on these forums, you will find a mine of information.

Good luck with your studies!

 

[Jaylee]

Big thank you for your reply, all very useful information. May I ask, as I am part of the new generation of the NHS and wish to work alongside people to involve them in decision making and ensuring the best quality of life for my patients, do you feel nurses work positively with you in managing your diabetes or feel there is room for improvement in areas of care?

Hi @IsabellaWhite94 ,

Welcome to the forum.
You might realise that many Diabetics of all types take a proactive aproach to the individual's own managment on this forum which might stray from the NHS "handbook" on the subject.

Keep an open mind on your journey...

Tagging in a few Ds who may have some input. @bulkbiker @Bluetit1802 @robert72 @Brunneria

 

[Prem51]

Hi @IsabellaWhite94 and welcome to the forum. It's great that you are taking an interest in how diabetics cope and feel about their condition. I'm Type 2, without medication or complications, so it hasn't made a lot of difference to me.
But if I followed the standard NHS advice (the Eatwell Plate) I would probably be getting worse, fulfilling the NHS view that T2 is a progressive disease.
I hope you read the views of HCPs like Dr Malhotra, who advocate Low Carbohydrate High(er) Fat diets to prevent and control T2 diabetes.

 

[bulkbiker]

Hi Isabella
I am one that has had a fairly dreadful experience at my local surgery so took my condition into my own hands ( I would heartily recommend that approach for anyone Type 2). Seen by my Diabetes Nurse only to be told my condition is progressive and that I will end up on insulin is not really what someone newly diagnosed wants to hear especially when it seems it is completely untrue. So I did a lot of research joined this forum and turned my life around with little (actually no) help from my medics. I now use the surgery as a monitoring tool getting my HbA1c tests done 6 monthly. I get the results online so have as little interaction with them as possible.
I was always taught to question everything (strangely a degree in archaeology and classics helps a lot with that) and now hardly believe anything that mainstream medical orthodoxy says without checking it out for myself. So I don't believe what they say about diabetes or heart disease and cholesterol and would probably question any other condition were I to find I have it. However this attitude has led to me changing my way of eating dramatically , loosing about 30% of my body weight and bringing my blood sugar levels under control. I am now probably healthier than I have been since teenagerhood all thanks to my HCP's being pretty useless.So I guess I should thank them..... but then again...

 

[Diakat]

As a t1 diagnosed as an adult (early 40s) my issue is that the nurses all assumed I knew everything and had been diabetic since childhood. I have been refused DAFNE and this is where I learnt how to manage my diabetes. Those of us diagnosed as adults seem to get little support.

 

[Bluetit1802]

I am Type 2 diet only. I had no symptoms prior to diagnosis (found on a routine review early 2014) and have had none since.

I have never seen a doctor of any description in relation to my diabetes. I was allocated a Practice Nurse who I have seen at various times over the last 3 or more years since diagnosis. She follows the NICE recommended diabetic care pathway to the letter and is lovely. My general care has been first class with one major exception - dietary advice. I feel she actually agrees with my very low carb/high fat way of eating but is prevented from saying so out loud because of the NHS/NICE guidelines on the Eatwell Plate.

I don't attribute my success to the care and advice I received but to my own proactive approach, plenty of research, rigorous self management and self funding of my testing equipment. The NHS has had no part in my success. So far.

 

[catapillar]

If you just want an idea of what it's like to live with type 1 there is a sticky thread that deals with this - http://www.diabetes.co.uk/forum/threads/explaining-what-its-really-like-to-live-with-type-1.103794/ - you'll notice on the whole it's not the physical effects of diabetes that is the focus of that thread, but the psychological / emotional impact of living with a chronic condition.

If you want an idea of what HCPs are like from the point of view of someone with type 1 diabetes I would say it's important for you to realise that while the HCP might be dealing with me and my diabetes for 15 minutes in the appointment I'm the one dealing with it 24/7. So what I need is support in getting access to the right education (DAFNE courses, check out the Bertie online course) and recognition that I'm not a diabetic out of the pages of a textbook, I'm a real life person dealing with things your textbook might not cover like hormones from stress or periods, illnesses, real life foods and carb counting them (give that a try for a week), exercise. There often won't be an answer that works for every person the same, diabetes is a frustratingly individual condition and it will be a process of trial and error to find a solution that works for the individual, that process is usually going to be the responsibility of the patient. Some recognition from HCPs that that is a large responsibiliy would go down well - emailing a patient to advise them to "do another basal test" without any understanding of what a pain in the neck basal testing is would suggest somewhat of a lack of bedside manner.

 

[Resurgam]

As a type two who seems to be getting along fine on diet control only I feel that the medication I was prescribed, tried and decided was too dreadful to go on with wasted the NHS's money - similarly the education sessions run by the hospital were not telling me what I needed to know - my results just puzzled the people running them.
Controlling BG levels by eating low carb seems to be so easy and a cheap option - I suspect I have had some problem with carbs for most of my life, but eating low carb masked it, but no harm done as far as I can see - except for all the times I was told to eat carbs and so got fat, oh and the pre eclampsia with my second pregnancy was scary. If I'd have gone on with the diet as prescribed it could have been bad. I learned to lie to doctors, which isn't really a good thing. Still - they were telling me carbs are good, so tit for tat, really.

 

[lowedb]

My GP (at least the one I deal with rather than my nominated one) actually told me that the medical profession is really slow to get on board with up to date information. The first GP and the Diabetic Nurse both gave me the 'progressive condition' and 'eat carbs' guidance, but the one I see now told me about Low carb. Have a look in my signature what this guidance has done in just a few months. Initially I thought living with it was gong to be a real problem, but ignoring the standard advice and listening to more up to date advice has helped and given me confidence.

So in your career, I'd say please always listen and learn.

 

[Totto]

Hi Izzy, I'm T2 and was diagnosed at the age of 50, same as my dad and most relatives on his side of my family. It took too long for me to get the correct test to diagnose me, an OGTT, as my fasting BG never was out of the ordinary and I lacked the usual signs of metabolic syndrome. I did have symptoms for a couple of years, mainly very painful cramps in my hands after eating carby things like rice or bread.

My GP is great and prescribes test strips while the DN constantly questions my diagnosis as in her view a HbA1c of 32 is impossible to achieve for a diabetic. Well, it would have been, had I followed her advice of eating plenty of starchy carbs with every meal and a lot of fruit and not test my BG.

I manage my diabetes as I find works best; testing new foods and meals thoroughly, staying away from stuff that raises my BG and keeping BG below 7 at all times, almost, through LCHF.

I am on no meds for diabetes and very few others, just thyroid hormones and occasionally beta blockers to treat Afib.

 

[Lamont D]

Hi, @IsabellaWhite94 ,
Welcome to the forum.

I'm not diabetic, but I do have a pancreatic condition called Reactive Hypoglycaemia.

But this what I want to post about.
I believe that there are many forms of metabolic conditions. And no two patients are the same, we are very diverse.
Not only T1, T2, there are type 3c, type 11/2 and of course others.
My point is that just because someone has diabetic symptoms and levels, it doesn't mean they are compartmentalized into that group, keep an open mind!
When a patient complains of diabetic symptoms, instead of throwing medication at them, a change in diet is the first step and if they are willing to take on board a change in diet, then push them to it as it will save a lot of trouble further on and their future health.
Oh, yeah, low carb works!
I wish I would have been given that advice all those years ago!

 

[JacquiMorrison]

Hi, I'm type 1, only 23 and been diagnosed for 16 years. Similar to one of the above posts I've now signed up to attend a DAFNE course because 16 years ago it was "here's a needle and pen, take the same amount each day and eat healthy" now it's carb counting and correcting and knowing what to do when you're ill and to keep it under control so you don't get ill. Adults seem to get very little support and my nurses have said "you'll figure it out"! This forum has helped massively.

I'm very lucky I don't suffer from stress or anxiety or any mental issues from diabetes.

I don't exercise so can't feedback on that.

Injecting is painful and a hassle in itself.

I've developed slight retinopathy from poor control I went 3/4 years without checking my blood sugar no idea how I am alive and apparently it's reversible if I get it under control now - very lucky.

Tired if sugars aren't controlled, I find myself sleeping more than my partner even though he has longer shifts at work.

Doesn't affect my social life or family or anything. Don't get much support but I'm thankful I don't need support from others when some people do.

Only thing I would say is it's not as simple as calculating a meal and injecting and waiting for the next meal it's constantly on your mind; where are my levels going to be at, what can I eat, don't have anything to eat cause insulin doesn't work as fast as food etc. It's a lot but I guess we get stronger mentally by having it.

Also got to be a mathematician for calculating carbs haha

 

[gavin86]

Hi I don't have any advice re: long term as I'm new to it all..
But here's an important one if you end up working in hospital:

if a tired/rushed/inexperienced doctor tells you to give fast acting insulin - overnight/not before a meal - Ask the patient if that dose seems like too much to them...
I was newly diagnosed so had no idea and just let them stick it in me before knowing the dose, doc ordered 10u novorapid... As soon as the nurse told me I knew what would happen...
this was 4hrs after dinner, when I'd already had 12u.

Spent the rest of the night awake doing bgl tests 4x an hour and cleaned out the ward's supply of sugary food/drinks... the next day my endocrinologist was NOT happy.

(not sure how it works where you are - in Australia if it's night and the nurse reads your bgl as high, they ring up a general on-call doctor to ask what action to take)

 

[leslie10152]

The best wa

Hello everyone my name is Issy and I am student nurse coming to the end of my second year of training. I am currently writing an essay about long term conditions and the affect this has on the individual and I decided to choose to write mine about Type 1 diabetes, however this is open and welcome to feedback from both type 1 and type 2 diabetic individuals as I would love to understand more about both. I was just wondering if anyone would be willing to share any information about how the physical effects of diabetes effect your life e.g. neuropathy, daily insulin injections, retinopathy, tiredness, hypo anxiety etc etc as this is one the of sections of my assignment and I would love to hear some feedback from people who actually have real life experiences of diabetes and I feel this information is most valuable. All information will be confidential and no names etc will be used in my assignment its more to just give me more of an insight into coping with diabetes.
Many thanks!
Issy -student nurse

The best way to learn is - go to the source! Talk to diabetics, hear their stories and learn from their experience.

 

[leslie10152]

T

As a t1 diagnosed as an adult (early 40s) my issue is that the nurses all assumed I knew everything and had been diabetic since childhood. I have been refused DAFNE and this is where I learnt how to manage my diabetes. Those of us diagnosed as adults seem to get little support.

Tell me about THAT ONE!