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Living with Type 1 diabetes...HELP please

G

Graider

Newbie
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1
Dear All,
I am a type 1 diabetic (have been one for the last 3 years), and I'm having serious issues with it. I don't know anyone with diabetes, family or friends, and since I've moved countries 4 times these last three years, I've never had proper control either with regular visits to the doctor. I guess, I would like to know if what I'm going through is in any way normal and if anyone else has experienced it too.
I started off completely denying I had diabetes. I ate what I usually ate (and that has never been healthy, Im a total sugar junky), didn't really exercise, and soon found out that that if I skipped on day insulin I wouldn't even gain weight (I never stopped taking night insulin though). In retrospect, I have been really stupid, I realize. Either way, for the first few years I was kind of feeling okay, even though my average long term sugars were around 12. Lately, however things have turned around. I have started feeling bad pretty much all the time. I'm tired, irritable, have cheast and kidney pains and all I want is sleep. It's like there's a permanent cloud in my head, I can't concentrate on anything (not fun, while doing your masters) and have weird mood swings (so not me). I've managed to bring down my long term sugars to 8.9, which I know is still too high but my current doctor doesn't seem to be worried. I know though, that it's not ok. At this stage however, I feel like I no longer have any energy to do the things required to get better. I feel a bit like I've never been given proper guidance, and I'm not sure where to get it either. I've never spoken to a dietician or even met with a person who's experienced diabetes. Is it normal to feel this way? Is it more in my head, the tiredness and diziness? If anyone has any advice on how they coped with it, what routines they started doing, or what helped them in general accepting the fact that they have this conditionm, I would really love to hear it. It makes me so angry that I can't wake up one day, and make it go away. And while I wish for the "cure" to come, I'd still really rather stay around till I'm an old lady. At the rate I'm going though, I'm worried it won't happen.

I apologise if this is too whiny/personal. I just figured, if you don't ask for advice you're not gonna get it:)
 
Hi Graider,

I have only just been diagnosed with type 1, and like you I was totally shocked by it. So far, I think I have been coping quite well. I have a very supportive fiancee and a good diabetes team. I think that you should have a word with your current doctor and see if he can refer you to your local diabetes team. This should be standard practice on the NHS.

You could also try to get your family and friends more involved. Get them to read up about the condition, learn with you about the diet you should be eating and support you in that.

I have found this forum to be full of very helpful and supportive people too. Have a read of some threads and pick up some advice (although make sure that it is relevant advice for your circumstances)

Also, check out diabetes.org.uk - They are the diabates charity in the UK. They seem to arrange meetings / events for diabetics. See if you can pop along to one and meet some more people who will have gone through everything that you have gone through.

Remember, you are not alone in this. It affects a lot of people and there is help out there

Paul

Just had another thought. You say that you don't know anyone else with diabetes... I thought that too. But I have found at least a dozen people where I work with diabetes. If you are still studying, the law of averages would suggest that there are more diabetics at your uni. Post a message on a forum there, or on a notice board. See if you can find some people with diabetes that way!
 
Hi Graider,

Well I've been feeling somewhat down about my diabetes too. However people on this forum are very helpful and you can usually get some good advice regarding certain matters relating to diabetes so it helps me. To be honest I'm surprised your GP hasn't referred you to a diabetes clinic. As said by PaulLove it is standard NHS practice to do this so make sure you ask about that. GP's aren't trained in all aspects of diabetes so they aren't the best people to speak to about it. Your long term sugars are called HB1AC - took me a few years to get what that meant so wasn't sure if you knew but anyway thought I'd tell you. Your diabetic clinic should look at your BG (blood glucose) levels and work out a HB1AC for you to work towards. They should also talk to you about various other issues that are concerning you along with give you regular eye checks, weight checks etc. etc. The other diabetes web link provided by PaulLove is really good too and full of information regarding diabetes. I know what you mean about not concentrating - I can't concentrate at the moment and I was studying for maths but have given up. It is to do with the fact my BG is all over the show - up and down. When I have a hypo I go all lethargic and when I have high BG I am the same - no win situation for me. However if you can manage to get your BG down a little bit great. As I said though you should discuss with a professional. Maybe adjust your night insulin by a unit or two more (unless of course your BG is excellent in the morning in which case a hypo may occur) to see if your BG can be lowered. Also don't worry about being silly in the past - I've definitely been a bit unsure and not acting according to how I should by not taken insulin in the past etc etc. and eaten sugar as I was a major sugar junkie too but now is the present and the best time to think about how we can be positive about this. Don't be afraid to ask anything... I'll try and help as much as I can as I'm sure everyone here will. I'm not the most positive of people right now though but I'll try. Everyone here though can all lend a hand to you - they are brilliant and I've taken great comfort in being with this forum.
 
Hi Graider!
I'm a T2, married to a T1 for 37 years. I work hard to control it for both of us. I find it frustrating sometimes too, but am eating low carb, so as to use as little medication as possible. Reducing the carbs, and the insulin commensurately, works for T1 husband too. Even after all these years of coping, I am still learning what can and can't be done.
It would probably be worth your while reducing your carb intake below the "eat plenty of complex carbs with every meal" level. there are several books which will show you where carbs are ( sometimes they are hidden) Collins has 2 little inexpensive books, A carbohyrate one and a Calorie one. They list thousands of foods, including many ready foods. Another good resource isDr. Bernstein's Diabetes solution. This book will tell you all you need to know. Bernstein is an American dictor specialising in treating diabetes. He's a T1 diabetic himself
 
Hi Graider
It may sound strange but the most important thing to cope with this condition is finding a base - someone you can talk to/whinge at/ cry with/ shout at trust me without that I wouldn't have coped for 18 years. Whether it was not being allowed chocolate as a child, being a teenager at school and being the only diabetic around or being 25 and having someone have a go at you cause they think your a 'junkie' in a restaurant.
Long term higher than normal sugars can make you experience what your going through but it does clear once you've got back hold of the reigns. There is always someone on here who can help and always someone who understands what your going through!
 
Hi,

My son is in the position as you at the moment but is in total denial of everything, he was diagnosed with type 1 diabetes 3 years ago and did have excellent control........ he is now 16. :lol:

Over the past year things have totally spiralled out of control and from a mums point of view is a heart breaking situation to be in espcially as our own GP is not that sensitive to his situation.

I hope you get the support you need and wish my son felt he needed the help like you do. :cry:

xx
 
marksmum said:
Hi,

My son is in the position as you at the moment but is in total denial of everything, he was diagnosed with type 1 diabetes 3 years ago and did have excellent control........ he is now 16. :lol:

Over the past year things have totally spiralled out of control and from a mums point of view is a heart breaking situation to be in espcially as our own GP is not that sensitive to his situation.

I hope you get the support you need and wish my son felt he needed the help like you do. :cry:

xx
Click to expand...

Hugs :| Can your son not join this forum and meet the community here :?: I was really down about my diabetes until I joined here. The people here have given me the strength and courage to keep pushing on :!: I know that sounds cheesy but it's true :) Knowledge is power so any questions you have or he has - just come on here and most of the time people give wonderful advice :!: GP's aren't always great when it comes to diabetes also. Just a question - does he go to a diabetic clinic as NHS rules state that he should be referred to one :?: In general they will be a lot more understanding about the condition and check his weight, eyes, feet and diet. They will discuss any concerns he has also. If they don't then complain but it seems that maybe he hasn't been referred to one :?:
 
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