Type 1 - dealing with the shock and daily life?

[Seeker2016]

Hello,

I have been reading this forum for a long time and it has been really helpful,this is my first post.

I had a random blood test in may this year, my bg came back as 29mmol. I believe the normal fasting is 4-5.Over the years I have been to the same doctor , since 2003 in fact. They last did a blood test on me in 2004, then nothing for 12 years, even though a couple of years ago two toes on my right foot went numb. I used to be a big walker, so my dr assumed it was too much exercise. No test for 12 years, then he said the test I had in 2004 showedme as borderline diabetic. Nobody ever mentioned it to me though. I am very angry about this because I have seen the dr 3x a year at least for last 16 years for an unrelated conditon. They take no responsibility at all for not following up,in fact pretending itssome mino oversight. They have told me I am type 1 , I am on 20u levemir and approx30-50u novarapid. Was put on insulin within 2 days of blood work. It turns out I have peripheral neuropathy in feet and arms which started with a vengence wheni fisrt started taking insulin. I have paid to have eye screening test. I have cataracts but no retinopathy. I am finding nhs support really poor, I have seen the dsn 3x since may. I have read everything I can on insulin use and hsve hadto self teach,mostlyfrom this forum so thankyou all. I am 46, was 9 stone when.diagnosed, am 5'10'. Had Ketones in my urine on diagnosis. Have seen the usual nhs dietitan (top in her field-she toldme to eat more pasta, carbs and starches and told me off for low carbing. I test about 10x a day).

My real question is, has anyone else had a similar experience? I have been in emotional shock since May, All I can think.about is the diabetes and managing it and insulin. The dsn spent 5 minutes showing me how to inject on the first appointment,but forgot to tell me about hypos. So I had a few in.the first couple of weeks. I.had never used insulin before , so I wasnt sure how I was expected to know about this stuff. My psychological health is shattered I am fearful all the time and s ared about long term complications.I am an.anxious person anyway. I need help. Btw the dsn is very pleasant but apart from just giving me insulin not very useful. I think they see so many people a day they dont really care anymore. Anyway, does the fear subside? The neuropathy inhands and feet, does it ever get better,its just about bearable during the day but when I lie down I can't sleep some nights. My life seems like a big mess at the moment,togethetmr with the stress of work,I am finding things unbearable some days. Diabetesis taking u p all my energy and headspace,the shock of it all. I feltike it was the end of my life. Thankyou

 

[azure]

Hi @Seeker2016

Firstly, let me tag @daisy1 for you as she has some basic info.

Secondly, I really recommend the book Think Like A Pancreas. It has lots of information in it, and I still refer to it even though I've been Typd - for more than 20 years.

To answer your question - yes, it does get easier It took me months to come to terms with my diagnosis. It's a huge change to your daily life. What helped me was finding out as much as I could about Type 1 and about how my body in particular deals with it. Knowledge is power

The most important practical thing is to perfect the art of carb counting and adjusting your insulin. Do you do this?

What are your blood test figures like?

The neuropathy may improve a little now you've been diagnosed. There's a useful thread about it here, suggesting tight control and various supplements. You may want to have a read of that.

Edited to add that I've started a new thread for you so you'll get more replies specific to you.

 

[dtennant9]

Hi @Seeker2016

Being diagnosed is a big shock and there is a lot to take in. As @azure says, try and read up as much as you can.

Do you have a helpline with your DSN that you can phone? My clinic run a phone line where I can leave a message and they'll get back to me. I don't use it all that often but I did use it a lot when I was first diagnosed.

Read as much as you can to understand how diabetes effects you and test as much as you feel necessary to find out how didfferent food effect you.

 

[noblehead]

Welcome @Seeker2016

I'm assuming you mean the care under your hospital diabetes team is poor, if so go to your gp surgery and tell your Dr and ask if you can be transferred to another hospital in your area (if possible), with regards to paying for your eye screening test, that is totally unnecessary and your Dr can arrange for you to seen next time under the NHS Eye Screening Service.

I don't have neuropathy issues but again I'm sure your gp can prescribe something that will help ease the discomfort, they may also be able to refer you for CBT if things are becoming too much for you,

The book Think Like a Pancreas which @azure mentions is a great read and will help teach you to manage your diabetes better, once your on top of things and your care is much improved I'm sure you will feel much better in yourself both physically and mentally. Best wishes.

 

[Seeker2016]

Hello,

Thanks azure for starting a new thread for this,noblehead there is a 8 month delay for an nhs eye test where I live, so I thought it better to pay. Thank you though. Bloods vary from 2.9 to 15.

 

[noblehead]

Hi again @Seeker2016

You should still register with the eye screening so your next check is free of charge.

Meant to say earlier, there's a great on-line carb counting course that you may find useful, you do have to register but here is a link to the website:

http://www.bertieonline.org.uk/

Good luck.

 

[Daibell]

Hi and welcome. Yes, you are entitled to free retinopathy screening once a year so do register either thru the surgery or direct with the hospital. I hope you realise your dietician hasn't a clue and is not at the top of her field. Ignore what she said about carbs and keep them down. Although T1s can match their insulin to the carbs you will gain weight if you have too many carbs and your blood sugar swings will be high. The first thing to do with insulin is to try to get the Basal balance right. Roughly, your morning fasting test should be between 5 and 7 mmol. There are more accurate ways of adjusting it. As others have said you need to be carb-counting which means adjusting your Bolus insulin to take account of the carbs in each meal. Most start at 1 unit to 10gm of carbs. Use the meter to guide you. Do come back for more advice.

 

[daisy1]

@Seeker2016

As you have been reading the forum for a long time you may have already read this but I am posting it in case you will find it useful. Ask as many questions as you need to and someone will be able to help.

BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 210,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a free 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.

 

[Seeker2016]

Thanks all. The site is invaluable really. I am not great on carb counting, but tried to cut down to below 100g a day. I was interested to know how long it took before people adjusted to the "new normal", I find constantly having to think about diabetes,insulin,hypos etc really tiring and exhausting mentally. I can only assume it does get easier but it is very hard at the moment.

 

[noblehead]

It does get easier in time and carb counting and working out the insulin doses will become second nature @Seeker2016 , how long to return to normal depends on the individual and there's no set time I'm afraid.

Make sure you register on the on-line carb counting course and chase-up your Dr to get your appointments booked, if you have any other issues or concerns then do come back and ask away on the forum, you've come to a great place for help & support

 

[Diakat]

@Seeker2016 huge hug. It does get easier but it sounds like you have not had great support from the medics. You say 15 to 2s - we're you given a range to try and be in? Sounds like you need help with dosing/carb counting. Have you seen a dietician? Mine helped with carb counting.

 

[azure]

Thanks all. The site is invaluable really. I am not great on carb counting, but tried to cut down to below 100g a day. I was interested to know how long it took before people adjusted to the "new normal", I find constantly having to think about diabetes,insulin,hypos etc really tiring and exhausting mentally. I can only assume it does get easier but it is very hard at the moment.

Carb counting is more about adjusting your pre-meal insulin to the carbs you're about to eat. Type 1s here eat varying amounts of carbs. I personally eat around 180g per day. Find a level that suits you Carb counting and adjusting insulin in that way is crucial to get good control. The better your control, the better you feel, physically and mentally, I've found.

I think it took me months to come to,terms with the diagnosis, and then probably a few more months after that to get my head around what I was doing. I don't remember exact time frames. I was angry and upset for the first few months, down for the next few, then getting used to the practicalities and improving my control. So maybe a year in total at a very rough guess? But things got easier after a few months (six, maybe) , and after I'd read some good books and felt more in control.

 

[Freema]

Hello,

I have been reading this forum for a long time and it has been really helpful,this is my first post.

I had a random blood test in may this year, my bg came back as 29mmol. I believe the normal fasting is 4-5.Over the years I have been to the same doctor , since 2003 in fact. They last did a blood test on me in 2004, then nothing for 12 years, even though a couple of years ago two toes on my right foot went numb. I used to be a big walker, so my dr assumed it was too much exercise. No test for 12 years, then he said the test I had in 2004 showedme as borderline diabetic. Nobody ever mentioned it to me though. I am very angry about this because I have seen the dr 3x a year at least for last 16 years for an unrelated conditon. They take no responsibility at all for not following up,in fact pretending itssome mino oversight. They have told me I am type 1 , I am on 20u levemir and approx30-50u novarapid. Was put on insulin within 2 days of blood work. It turns out I have peripheral neuropathy in feet and arms which started with a vengence wheni fisrt started taking insulin. I have paid to have eye screening test. I have cataracts but no retinopathy. I am finding nhs support really poor, I have seen the dsn 3x since may. I have read everything I can on insulin use and hsve hadto self teach,mostlyfrom this forum so thankyou all. I am 46, was 9 stone when.diagnosed, am 5'10'. Had Ketones in my urine on diagnosis. Have seen the usual nhs dietitan (top in her field-she toldme to eat more pasta, carbs and starches and told me off for low carbing. I test about 10x a day).

My real question is, has anyone else had a similar experience? I have been in emotional shock since May, All I can think.about is the diabetes and managing it and insulin. The dsn spent 5 minutes showing me how to inject on the first appointment,but forgot to tell me about hypos. So I had a few in.the first couple of weeks. I.had never used insulin before , so I wasnt sure how I was expected to know about this stuff. My psychological health is shattered I am fearful all the time and s ared about long term complications.I am an.anxious person anyway. I need help. Btw the dsn is very pleasant but apart from just giving me insulin not very useful. I think they see so many people a day they dont really care anymore. Anyway, does the fear subside? The neuropathy inhands and feet, does it ever get better,its just about bearable during the day but when I lie down I can't sleep some nights. My life seems like a big mess at the moment,togethetmr with the stress of work,I am finding things unbearable some days. Diabetesis taking u p all my energy and headspace,the shock of it all. I feltike it was the end of my life. Thankyou

sometimes Alpha lipoic Acid 1200mg/day can help neuropathy if you are lucky sometimes heal it all up but mostly just minimise it... thats what the doctors in germany use and then also take a lot of vitamin b all of them also b12 and folic acid , and on that vitamin d3 high dose.

I also got frightened out of my skin but now I use my fright energy to get as healthy as possible, walk very long walks for hours... and learn all I can about foods...

 

[Mona66]

Hello @Seeker2016 I am new to the group but I have just read your post and wanted to say I totally identify with you and understand how stressed you feel. I was diagnosed with Type 1 on Monday- this came on the back of another serious health condition for me and with work and family I wondered how on earth I was going to cope. I have been referred to an NHS psychologist (no appt yet and there'll be a waiting list) but I wondered if this was something that was available in your area? It may help? I also agree that this forum is a great source of help. All the best.

 

[Dark Horse]

Hello,

Thanks azure for starting a new thread for this,noblehead there is a 8 month delay for an nhs eye test where I live, so I thought it better to pay. Thank you though. Bloods vary from 2.9 to 15.

8 months? The guidance is that the first diabetic eye screening appointment should be offered within 3 months of diagnosis. What part of the country are you in?

 

[Seeker2016]

Hello, I am in Surrey. They said the eye screening test has been outsourced and the outsourcing company has a backlog. I have tried chasing.

 

[Dark Horse]

Hello, I am in Surrey. They said the eye screening test has been outsourced and the outsourcing company has a backlog. I have tried chasing.

The Surrey Diabetic Eye Screening Programme is managed by Virgin Care but I haven't heard of a backlog. However, which screening service you go to depends on which GP surgery you are registered with rather than where you live. For example, if you live in Surrey but were registered with a GP in Kingston (formerly Surrey, but now south-west London) you would be screened by the South-West London Diabetic Eye Screening Programme. This was taken over by Emis Care in April 2016. Given the date, to be fair, if they had an 8-month backlog, they would have inherited a lot of it.

When you are offered an appointment, I would attend it even if it's quite soon after your private appointment - the images taken will be saved and used for comparison the following year.

 

[Seeker2016]

Thank you and thanks to all who replied to this thread so far, I have been feeling terrified and alone since diagnosis, I don't think anyone prepares you for the emotional shock and the weirdness of having to inject youself all the time or the complications already present especially when it has progressed without being diagnised for so long. I would really like to know how other newly diagnosed insulin dependents are coping.