My 'hell' Story - Type 1

BrignanoJ

Newbie
Messages
4
HI everyone i just wanted to introduce myself. My name is Jodie and im 19 yrs old. i have had type 1 diabetes for 7 years and it was a very scary start to the type 1 life. Before i was diagnosed i became very ill over one weekend, as anyone would, we thought it was just a bug and that it would get better... however gradually became much worse. I wasn't with it, constantly drinking, going to the toilet, vomiting, and couldn't move off the couch for days on end. Passing out on the toilet for hours and not realising, not being able to walk or function properly. A doctor came over to check on me as i was unable to make it to the doctors, at this point i was unconscious flat out on the couch. Bloods were checked and were 30+. I was rushed to hospital and i had slipped in to a diabetic coma. Still at this point not knowing what was going on, where i was, wishing to see/speak to my mum, out of it as we say, in a coma and in Intensive Care Unit (ICU) for 2 weeks. Lost loads of weight, not eating, drinking, mostly wishing i could speak to my family, thinking and wishing to see and speak to my family but words unable to leave my mouth... I had water on the brain, Hypothermia and Kidney Failure... My family visited me each day hoping to see their daughter/sister... days went bye and started seeing positive results, i started to come back around, gradually got my colour back, my apetite back, back to my usual self after a few weeks from being in the coma. My family were so relieved that i was back, that i survived and jus so happy to see and speak to me. I gradually got better after a few weeks and i had a lot of support from my family and the doctors and nurses who have been looking after me. I left hospital still confused as to what 'Diabetes' was... help and support from my family really helped get to term of what this condition was and how to monitor it. Everything was going to well up until the age of 17... to this day im still struggling with my diabetes, not having the mental state of mind to 'be bothered' to do it, in a low mood constantly thinking why me? constantly wishing to be 'normal' ..
 

Phoenix55

Well-Known Member
Messages
577
Type of diabetes
Prediabetes
Welcome to the forum @BrignanoJ . I will tag @daisy1 who will be along with info for newbies. That was a traumatic experience for everyone, I can't imagine what your parents went through while you were in ICU. It is not easy to get out of the downward spiral of depression but I am sure that when you find you can 'be bothered' to manage your diabetes regularly you will find that you are more 'normal' (whatever that is) and when you accept diabetes as a part of you then you will be able to concentrate on the rest of your life, what you want to achieve/see/do. Smile and you will not only save energy (it uses fewer muscles to smile than to frown) but it will also lift your mood.:)
 
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BrignanoJ

Newbie
Messages
4
Welcome to the forum @BrignanoJ . I will tag @daisy1 who will be along with info for newbies. That was a traumatic experience for everyone, I can't imagine what your parents went through while you were in ICU. It is not easy to get out of the downward spiral of depression but I am sure that when you find you can 'be bothered' to manage your diabetes regularly you will find that you are more 'normal' (whatever that is) and when you accept diabetes as a part of you then you will be able to concentrate on the rest of your life, what you want to achieve/see/do. Smile and you will not only save energy (it uses fewer muscles to smile than to frown) but it will also lift your mood.:)
Thank you, and yes very scary but very lucky to get out of it. I need to change as I don't feel I'm getting any better at it, I need to get in that mind set again and control my diabetes rather than diabetes controlling me, thank you for the support:)
 
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kitedoc

Well-Known Member
Messages
4,783
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
black jelly beans
Hi @BrignanoJ, I am very glad you survived such a touch and go situation 7 years ago! Your life has changed forever.
Yes, you have been given that chance to live - as daunting that is!
By comparison I developed my diabetes over a week or two and was mildly ketotic when admitted at age 13, 51 years ago.
So yes, a long and fruitful life is possible. And without the dreaded complications, beyond cataract treatment at the 46 year mark on insulin (for which I blame not only diabetes but also the Aussie sun) and pesky things like carpal tunnel troubles.
Diabetes has not stopped me indulging in sport, past-times, a career in medicine (retired 4 years ago), marriage and children. (albeit as a male I cannot compare myself to you but I do know of a number of female T1Ds who live well and productive lives, including all the female diabetics on this site - and no they did not bribe me to say so, but I would have suffered scorn for failing to do so)!
Back to your current dilemma, the first while after diagnosis and recovery is a shock like none other.
You may have had aspirations for your life and now wonder what the future holds.
You may have thought of many names to call this condition (and not all of them printable)!.
Each day is another one to get through, trying to deny that this is all real.
And feeling unwell if the blood sugars get too high or low is like a punishment.
For all our intelligence, us humans can be a stubborn lot. And we grieve what we have lost, we deny it; bargain for a miracle, for deliverance; we rage against the unfairness of it all. Am I being tested or challenged? What did I do to deserve this?
Grief cannot be hurried but staying well helps, as difficult as that is. You may still be grieving in a way.
By joining this forum and site you have made an important step - writing about your experience and how it is affecting you - sharing the worry - we have all been there at some point and we have survived. So can you.
Step at a time. Keep It (non-Sweet) and Simple
This forum/site provides fair dinkum (= Aussie for true) diabetics with experience +++, supporters, 'cheer squads' etc.
Your GP is also an important person to cultivate as you will be seeing him or her for your general health as well.
In the past 7 years you will have had the challenge of going through adolescence - a time of growth spurts, social changes, hormone surges, insulin doses up and down like the ocean swell. Whilst there is an expectation from your health provides to have 'good BSLs', but do they know how difficult that is when you are going through the second most intense growth time of your life?
Who would not feel fed up, tired, lacking in the joys of life with this by age of 19?
Just as a contrast, and not for any pity, I had to traverse this tumultuous teenage time before glucose meters, fancy insulins, pens, pumps etc were available. For me regular exercise helped to keep me feeling well and trying to learn the growth spurt pattern, when to up the insulin and when to reduce it back down.
Being stubborn and a tad obsessive I did my best to keep the boat steady. It was never easy but it was endured.
How? Each person will have things that work or not. Exercise, hobbies, self humour and reflection all helped.
Exercise: Swimming regularly, walking, a challenge in balancing in insulin, food had the added bonus of being a stress reliever.
Interest in canoeing, sports and scouts etc. Later in kite flying (see avatar)
Humour and Self Humour: Injecting insulin to the tune of an old, old pop-tune "Needles and Pins", an injection was a chance to perfect javelin throwing. I carried a bottle of glucose dissolved in water for use during school sports ( my baby bottle as I called it) and with rough and tumble sports like football, I would carry soft lollies in his pad pockets, less bruises that way !!
Reflection: You may have noticed over time that certain habits develop to a point where they become automatic. As long as we have nothing reminding us too much we tend to forget whether our automatic habits are actually achieve what they were originally for. So when blood glucose meters came along, in place of urine testing, I had a rude awakening.
These 'awakenings' and constant reminders ( e.g. a needle or 4 a day) wears us down. Testing before and after meals ? every day ? ? rotate through different times on different days, what to eat and not to eat (Ain't that the question)?.
It is easy to fall off the diabetes wagon. Hands up who has not at some point? Sometimes a kind word from a nurse, doctor or other HP or a friend helps or a distraction, some achievement, some victory gets us back on board (or perhaps skating behind holding a rope attached to the wagon)!
And I recall a cartoon where a guy is sitting in a chair being interviewed for a job. The plaque on the wall reads "Training Agency". Interviewer: "Mr Jones, what makes you think you are the best candidate for this position"?
Mr Jones: "Well I believe that you learn from your mistakes. And I make enough mistakes to train everybody here".
We diabetics all make mistakes. We try to learn from them. But without some errors, without something that makes us work at getting things better we cease to learn. Sure, sometimes things do not work out right no matter how much we try but other times we do not know why something works out. We learn to accept the victories whether they are accidental or 'on purpose', just as we accept that to err is human, for things to go awry is sometimes avoidable but not always.
At some level we learn to accept ourselves, love ourselves which includes looking after ourselves the best way we can.
A bird does not sing because she can (perfectly or not), she sings because she has a song.
Please keep posting fellow warrior!! :):):)
 
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daisy1

Legend
Messages
26,457
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Cruelty towards animals.
@BrignanoJ

Hello BrignanoJ and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find this useful. Ask as many questions as you want 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 235,000 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 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.
Take part in Diabetes.co.uk digital education programs and improve your understanding. Most of these are free.

  • Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why

  • Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
 

Daibell

Master
Messages
12,656
Type of diabetes
LADA
Treatment type
Insulin
Hi and welcome. Not many have a T1 coma as bad as you had and it's great that you came thru it. If there are any specific things you need advice on, do post in the T1 forum but I guess your main need is to confront where you are now and to move forward. Remember you are not alone.
 

Gran25

Well-Known Member
Messages
89
Type of diabetes
Prediabetes
Treatment type
Diet only
I don't know whether it would help or not but I found googling famous people with diabetes to be strangely comforting. Some amazing athletes, actors and musicians are walking the walk...
 

Alexandra100

Well-Known Member
Messages
3,768
Type of diabetes
Prediabetes
Treatment type
Tablets (oral)
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Freema

Expert
Messages
7,346
Type of diabetes
Type 2
Treatment type
Diet only
your diabetes is really one of the most unfair kind of conditions... but keep on trying to do your best... I think in a few decades type 1 diabetes is maybe curable at least to some degree.... so sad that it hits children and young adults...