hard beginning of the year

[olaolaola]

Hi, I just thought I might share my story, as I feel very lost today. I'm sorry it's long, but maybe just writing it all will help.

I'm 32, originally from Poland, I live in the Balkans alone (I mean no family) and I was diagnosed in the beginning of the year. I spent 5 days in the hospital, not speaking to much of the language, yet not very frightened -- the hospital as such helped and I finally felt safe and taken care of and I was let go with diagnosis of T1 and on Levemir and Novorapid. However nobody explained my nothing about carbs and counting (and it wasn't even the fact I was a foreigner, it is just the way it is here). I was supposed to just take 10-12 units of Novorapid with every meal at a very fixed hours. for an unknown reason I got handouts with diet for pregnant woman with diabetes that suggested having snacks between meals. Also I was recommended to measure BG only before the meal. So I followed it all. And of course it was failing me, maybe not completely, but I felt something was wrong. Before diagnosis my eyesight changed and they also recommend to wait with making new glasses, since it should come back to normal after a while (and it did), but it made my life difficult, because I couldn't read any additional information in the internet nor even read the products' labels sometimes. It was like 2 months from hell with no information and no possibility of getting it. And also nobody could help me too much. I got a huge support from all of my friends here and family, but they never could really help in getting me outside of this dark side of having zero reliable information.

Finally I found a doctor, who said to check BG before and after and adjust the insulin to the carbs (although he didn't tell me anything about carbs' counting, but well that was something), he also told me to do c-peptide test. So I did it, it took quite a while to have it. Meanwhile my sight went back to the normal one (to the one my glasses work just fine), so I could search for information, I learned about carbs and exercising and all. I was doing all that while traveling extensively around Europe because of work, trying as much as I could to estimate food right, keep BG balanced and constantly having some kind of infection and basically being totally exhausted.
I got a chance to go to a doctor in Poland who was very supportive and finally giving me information about things I didn't know I should have asked, which was a great relief.

But back home I got the peptid-c results and it was 0,21 which is exactly in the beginning of the 'normal range'. So the doctor changed the diagnose from T1 to T2 and told me to go on metamorphin and use 1-2 units of Novorapid before every meal (and unchanged Levemir). Nothing more nothing less. It was in the end of April and I got something like a breakdown. Another doctor (and that was the good one!) who turned everything upside down without a word of explanation. So I decided not to start with pills, called Polish doctor and she said to keep on with insulin only and to do the GAD test. The stupid thing is I believe I lost my prescription (also for more tests incl. thyroid tests) and I got so lost that for more than I week I got stuck with the thought I can't do anything now. (I even didn't realise I can do the test without prescriptions). And of course it's not the whole story and there is much more, but I think that covers the most of difficult parts of my first 6 months of 2015.

And every time I come to this forum I feel so stupid and like I'm doing something wrong all the time, also maybe I should have started with T2 pills and go with what the first doctor said. Basically every time I feel pain in my legs (since I wasn't diagnosed for a long time I developed neuropathy) I feel like I'm failing myself and most probably I don't exercise enough or should take my sugars to the better level that I don't know about (now it's about 4.4-6.5) or change my diet, while being so terrible at cooking and planning. I thought I would get easier with time, but this change of diagnosis upset me so much, after having the sense of getting it all together, that I can't make any decision or simple move like doing more tests.

Please don't get me wrong it's not self-pity, it's just I never had a chance to express it and felt like I'd explode without saying it somewhere.

 

[Jo123]

Gosh you've been through a lot.
Firstly those readings look great to me, so rest assured you are not doing harm to your body.

Could you pay to go to a endocrinologist who speaks your native tongue and start afresh, a third party specialising in diabetes to give you a definitive diagnosis?

 

[DeejayR]

Hello and welcome. Glad you joined us. Obviously you're not just feeling sorry for yourself and in fact have done remarkably well in your circumstances to keep focused. Also, well done for writing it down so we can see how you're fixed.
Perhaps you can sweep the table clear of all the bad stuff of the past few months and start again with the forum. We're all going in the same direction here, albeit by various routes. @daisy1 will be along soon with a great guide to what you need to know. Best of luck.

 

[olala]

Hi, just after I wrote all this something happened with my account and I couldn't change the password, so here is my new account - but the same me.
Thank you for your words of support. That means a lot to me.

Yes I think I'll do all the tests and visits privately, but it will take about 3 weeks to get to somebody speaking Polish or English. First I'll try to do tests here.

 

[copepod]

As many people find it helpful to get advice from diabetes charities in their own country - eg Diabetes UK for people resident in United Kingdom - I wonder if there's an equivalent organisation in either Poland or the country where you live. Diabetes UK produces some information in Polish for new immigrants who don't yet have good English. Perhaps your local country does the same? Getting hold of a reference book with details of nutrition contents in food would be useful. Eg Collin's Carb Counter http://www.amazon.co.uk/Carb-Counter-Carbohydrates-Everyday-Collins/dp/0007176015 Obviously this is aimed at British readers, and although several different styles of food are covered in Eating Out section, eastern European food is not included, as there aren't many eastern European restaurants in UK, nor are such countries as popular for holidays as Spain and Greece.

 

[olala]

@copepod Thank you for the book suggestion, looks really extensive! I use Diabetes:M app for my phone or every time I try to google new food.
Regarding searching for advise, Polish community is supportive, but my case is a bit different, for instance I don't go with Polish national health care system. But I take as much as I can from it. And in my current home country - there is no system or community support. Nothing remotely helpful.

 

[daisy1]

@olala

Hello and welcome to the forum

You have been having a difficult time trying to get advice. Here you will get plenty of help from members - just ask as many questions as you need to and someone will help. Here is the information we give to new members and I hope it will be useful although things are of course different in Poland.


BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

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.

 

[JAY1JAY1]

Hi and welcome
The first thing to remember on this forum is there is no such thing as a silly question so do not be afraid to ask anything.
Every one on here has been on the dark side a few times the feeling that no one will help on the forum we pride ourselves in trying to help all we can. So ask ask and ask again and please don't feel alone you have us
Keep well stay safe JJ

 

[Brunneria]

Hi and welcome!

If you have your blood glucose readings consistently in the 4-6 range, then I think you are doing very well indeed.

Is that before food, or all the time?

Stick with the forum. It's a steep learning curve, but well worth it.

 

[PatsyB]

hello and Welcome to the forum

 

[olala]

thank you everybody for good words and advice.

The readings are both before food and after. It's hard to keep it like this while traveling, but when anywhere stationary for more than a day I'm managing to keep it this way. Or maybe I'm just lucky.

 

[Mike d]

Welcome @olala

Those numbers are pretty good as @Brunneria mentioned.

Stick around as this is a HUGE community ready and able to help you out. Explode to your heart's content .... that's what most of us do from time to time. You are amongst some REALLY fine people

Mike

 

[Robinredbreast]

Hello and welcome, like others have said, your numbers are pretty good, so well done, but so sorry to hear of your awful diabetes journey. Take care,

With best RRB

 

[4ratbags]

Please dont ever feel stupid when you come to the forums. Diabetes is such a personal journey in that it takes time to adjust and get yourself on the right track and it certainly doesnt help when you are being given so much conflicting advice from the different doctors. The one thing I have learnt on the forums is there is no such thing as a silly question. Your BS seems to be quite good, im sure you will be fine just give yourself a bit of time to adjust and try to make small changes so you dont get overwhelmed. I know with myself there were times when I just couldnt get my head around it. One minute I was on the right track and the next I had no clue what I was doing.