My Introduction - Struggling with Diabetes

[kitsunerin]

Hey all,

My name is Matthew, I'm 29 and from North Wales. I was diagnosed with diabetes when I was 16 and bang in the middle of my exams. I never dealt with it. The care in Wales was horrible at the time and I was quickly taken to hospital, shot up with insulin and told I had type 1 diabetes. This was after my mum had noticed I was drinking a lot of fluids and was always thirsty, so she took me to the GP.

I couldn't believe it - I thought that only old people could have diabetes and that it was caused by being overweight. I was naive and embarrassed of my illness. I didn't tell anyone in school. My mother became more smothering and people started dictating what I could and couldn't eat. I went through this whole time in a sort of daze - I couldn't come to terms with having diabetes, and I don't think I ever have.

When I was 19 and moved away from home for University, I got severely depressed and attempted suicide multiple times - mainly because I felt worthless and I didn't want to live with diabetes any more. I was seeking help prior to this but was dismissed as being 'a little low'. After this I went into psychiatric care which I have been in for a while now. I see them every few months now and have been diagnosed with severe depression, seasonal affective disorder and social anxiety disorder.

I never really connected any of this with my diabetes until recently. But now I think of it, I have just a disgust and hatred towards myself for having diabetes. I check my bloods and take insulin but my sugars always run high. I have resigned myself to having my life cut short because of diabetes, and wonder if there is a point in living that long anyway. I really, really struggle with it and don't know anyone with type 1.

I have been referred to the DAPHNE course, about 2 months back and am still waiting. The diabetes education I had was very very vague and I received a lot of conflicting information when I first was diagnosed. So I'm hoping that I can change my life. I don't want to die, or lose limbs, or my sight. I know that I am going down those roads and it makes me want to cry and just punish myself.

I need the inspiration and motivation to turn my life around and it's going to be so, so hard. But I really hope I can do it. I hope that coming to these forums will be the start of the rest of my life.

 

[seadragon]

So sorry to hear your sad tale. it seems like you didn't receive the help and explanations you really needed. Type 1 is an autoimmune disease and absolutely not something you should feel is your fault in any way. You've come to the right place to find help in dealing with it. I'm not type 1 so can't totally empathise with your situation but I'm sure there will be plenty of type 1 s on here who can help you. I can only imagine that your teens are a difficult time to be having to deal with something so life changing. It's great that you've now found this forum. @daisy1 will give you the general info for all newbies on diet and its great that you've now got the chance with support from the forums to give yourself the life you deserve.

 

[himtoo]

Hi @kitsunerun

your post is a powerful and moving story about a young man that has not accepted his illness and suffered for the last 13 years through no fault of his own. I would like to offer to help you if you want.
I also live in north wales and am available for you to message me if you want and perhaps meet up to talk about the difficulties of living with the D. The saying 2 heads are better than 1 is a starting point and with my 43 years experience of Type 1, perhaps I could help you to get your life back.

I have done DAFNE and understand how important getting your insulin and food and lifestyle is.

 

[ButtterflyLady]

I don't have T1 but from reading the forums I want to share that it is possible to get your BGs under control, once you have the right information and support. himtoo is a very experienced T1 diabetic and member of this forum and you couldn't wish for a better person to have help you if you wish. There are also lots of younger people with T1 here, people of all ages really.

I don't think you've been given good info and support so far and I think it's great that you have joined the forum, because I know there is a wealth of knowledge and experience here, and people are very caring. You're not alone, heaps of people have been through a tough journey with T1.

I've lived with depression and anxiety for most of my life so I recognise the impact these issues will have had on you. I'm glad you are getting help. Not sure if you're aware about vitamin D and that many people in the UK and other places don't get enough sunshine every day. Not having enough vitamin D can contribute to depression. I take a supplement on prescription.

It can also be a good idea to get a range of blood tests from time to time to check that there isn't another illness contributing to depression, such as thyroid or iron problems. Unfortunately diabetes and depression can often occur together, for biological and psychological reasons. Living with T1 is challenging, and I think most psychiatrists would recognise that.

I'm feeling positive about your future now you have found the forum, and I hope you are able to get the info and support you need to get on top of things. xx

 

[4ratbags]

Hi and welcome to the forum. Hopefully you will find the support you need to help you get through. I know it can be hard to keep the positivity up at times and by the sound of it you have really been through the mill. I'm sure this is just the first step in the right direction for you.

 

[daisy1]

@kitsunerun

Hello and welcome to the forum Here is the information we give to new members and I hope it will help you especially as far as diet is concerned. Ask questions and someone will be able to help. You have plenty of friends on here who would like to help you.


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 over 150,000 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

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes-and-whole-grains.html

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

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 bloodglucose 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.

 

[kitsunerin]

Hi guys, I relapsed into awful control, smoking and general unwellness. I'm replying to this thread to say that I'm still alive and well, I really need to go through all the info on here.

Thanks so much for everyone's kind words.

 

[kitsunerin]

Also I forgot to mention that I have moved to Leicester this year, hence trying to find new resources and such.
Your words have literally brought me to tears, I am so so grateful

 

[kitsunerin]

I think right now the thing I need the most help with is getting my sugars to a normal level. I am in that cycle of hypo-hyper constantly, all day. If I could somehow reset it to 4-8 and work from that, I would.

I'm really struggling and I'm debating on going to the A+E but I'm not even sure they would be able to help. This morning my BS was 22.

 

[becky.ford93]

Hi, I'm only 8 months or so into my diagnosis but I can definitely relate!
If you're waking up with a high reading, you may need to increase your basal insulin. Thought before doing this you should test once or twice through the night to see what your levels are like (they should change by no more than about +/-2mmol)

 

[himtoo]

If you can take some time off for you it would be good to reset yourself and as becky suggested start by dong some testing of your bloods through the night.
you could also ring your local hospital ( in leicester) and ask to speak with the diabetes nurse specialist there.
she should be able to help you make some adjustments to your insulins to get you back in single figures.

and keep posting here please-- you have people on here that understand and care

 

[Klangley]

Welcome to the forum Matthew. There are some hugely experienced and kind people on the forum. Don't be afraid to share your worries and ask your questions. The negative consequences of diabetes in terms of loss of sight, limbs etc are not inevitable. And diabetes is not your fault. There are lots of older, healthy T1 members on the forum. Good luck mate.

 

[kitsunerin]

Thanks guys! I've been trying to really pay attention to carb counting and stuff the last few days but there is just SO much information, I'm really overwhelmed. I basically need to start from scratch I think!

 

[himtoo]

Thanks guys! I've been trying to really pay attention to carb counting and stuff the last few days but there is just SO much information, I'm really overwhelmed. I basically need to start from scratch I think!

try not to let it overwhelm you -- take it 1 day at a time , concentrate on getting little small bits of the puzzle sorted.
if you look at it all together all at once it can be daunting.
I am currently on a retraining journey myself right now as have just started on a pump. I am focusing on just getting my overnight basal rates sorted -

 

[Lau89]

I'm sorry to read about your struggles, taking things one day at a time sounds like a good idea as it is overwhelming. I hope things can get better for you