explaining what it's really like to live with Type 1

A

Australia 1

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Ive had diabetes for 42 years,my memory is shot to hell but i didnt realise it could be related to diabetes.Could it be the amount of severe hypis over the years? I suppose your brain is affected more than you realise.I did read somewhere that diabetics have a higher risk of developing dementia.Scary.

The List of things you have are not what I thought which was Cancer. Avascular Necrosis, Total Memory loss, yep. How many years did I have Diabetes, just how many years did I have Type 2 and now Type 1. Face it Sam, @Davidd1953 was my Dad,s Name. Yes I see it now. Much hard work for Hb1Ac of now 6.6%. Endocrinologist said, Sam that’s not bad. I want you to be in the 5.0 mmol area. If you fight this like you did your Lymphoma and Melanoma I promise you 80+ Years. It is a thin tightrope walk Sam. Stock up on everything as you are gonna win this.
Hey, Thank you @nessals946. You like Andrew and two women Linda and Sharon have lit me off and I am gonna Fly.
No Fear From Australia.
 
A

Australia 1

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@Grant_Vicat. Brother I went through a Hypo while writing on here. I thought that the disheveled mindset would be a class lesson in this subject. WRONG. As I look back on the. Experience people just had every answer in the book long after it was over with. This is whey too much for me. People cared. People were idiots and I will just read from now on. There knowledge is good here but I have had it with the experts. I am not going to accept anything unless it is from you. Thanks mate.
 
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nessals946

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@Grant_Vicat. Brother I went through a Hypo while writing on here. I thought that the disheveled mindset would be a class lesson in this subject. WRONG. As I look back on the. Experience people just had every answer in the book long after it was over with. This is whey too much for me. People cared. People were idiots and I will just read from now on. There knowledge is good here but I have had it with the experts. I am not going to accept anything unless it is from you. Thanks mate.
???
 
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A

Australia 1

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Wouldn't allow this section! As promised, my experience of hypos in general terms
Yet another Greek concoction, where hypo means “beneath” or “under”. At least for a comparably large range of readings Hyperglycaemia does not impair brain function whereas the NHS rates all readings of 4mmol/L and below as hypo. It is illegal for anyone to drive with a reading of 3.5mmol/L (more recently 5.0mmol/L) or under. Amazingly the lowest reading I have had while still able to make decisions (sluggishly) is 1.3mmol/L and yet on other occasions I have passed out at 3.9mmol/L. I am convinced this is because of variable glucose tolerance. In my early teens I had a very high HbA1c, which is a three month average read out. In other words the body becomes accustomed to functioning incorrectly and tries to compensate, e.g. by passing large amounts of urine. Hospitals encourage diabetics to achieve an HbA1c of about 53mmol/mol. I have achieved 38mmol/mol, which is as near as dammit normal for anybody. But this means my glose tolerance has drastically lowered and therefore the body tolerates much lower readings before shutting shop. This could be devastating behind the wheel of a vehicle. I have been strongly advised to raise the level and test before driving. I have personally driven a diabetic passenger who had been banned from driving because he had a hypo at the wheel and he and the cockpit were found ten feet up a tree in Norfolk. We are closely monitored and have to submit a medical declaration at least every three years, if not each year. It is therefore more than slightly galling when a drunken halfwit plunges into the back of a car, killing three vicars and is only banned for three years. But since when was life fair?


Hypos fascinate me. After all, they occur because the brain is starved of energy and therefore the body shuts down. Yet I am able to recall many of the topical and visual details and even the state of mind at the time. The shut- down of the brain can begin subtly. Many times my wife Helen has asked me to do a test because my speech has slowed down, not necessarily perceptibly to others. I might insist that I don’t need to. Difficulty in making choices or decisions is also a giveaway. Visibly the face takes on a deathly pallor because what little glucose there is has been distributed to the brain and heart. Vague staring is common, as is slurred speech. The problem is that these are all recognisable symptoms in a drunk. Similar to a drunk, a diabetic can become violent when accosted. This is because the brain translates well-intended actions into attack. When faced with a semi-conscious person it is unwise to offer questions or statements which require reasoning or choice. Do not say “Do you think you ought to have some sugar?” The sheer effort of making a judgement is enough to cause unpredictable reactions. In my 40s I burst into tears (a rare occurrence) when in a hypoglycaemic condition, simply because I was expected to make rational responses. Instead you should say something like “You need sugar, here is some.” Personally I hate sugar, and as I have said, solid glucose. They leave an unpleasant metallic taste in the mouth. If I were to go to the famous Desert Island, I would take something savoury, preferably involving bacon. I once said to a Catholic Headmaster: “If there’s no bacon in Heaven, then I ain’t going there. I probably won’t anyway” I have apparently punched well-meaning people who have tried to administer sweet tea. I am not, however, aware that Lucozade has resulted in violence.


I have a whole battery of warning signs when I am low, sugar-wise. The most obvious is sudden excessive yawning. Many times in public I have been tempted to ask total strangers whether they are diabetic, simply because they yawn incessantly. Is this because the brain thinks it needs bucketfuls of Oxygen to create unattainable energy? I can also feel unnaturally depressed. Red stars can dance within my eyes and if I walk into a darker area, what look like giant sunflower heads blot out my vision. Tingling affects all my mouth my hands shake, and I have a raging headache. I have often been alerted to low readings because I am unable to make decisions. Ironically this is often at lunchtime, in a food shop, when I am trying to work out what adds up to 60g of Carbohydrate.

Dear Grant_Vicat, Since my Famous on board Hypo Experience I remember that very profound that made you stand out from your previous writing. These Hypos are indeed very very strange. This May be a very simple question to you but you have really stirred me thinking up about Hypos since the last Article of inspiration that earned Kudos from me. I went for a 7 Kilometre walk to my bank today and I did it in low gear. Ever since my Chemotherapy In fall of of, 2014 in the Southern Hemisphere around June of that year this alleged Chemobrain is as real as a Hypo but not in the same terms. Amnesia and “where are the car Keys” is very much different than the unreality is reality syndrome. Of the 30 some odd Neurotransmitters in the Human Brain, I think as I read some of your work that Sugar has a profound effect of nothing even close to Chemobrain. Now the brain shutting down as our result of starvation as you said it well, has really got me thinking. This puts me in the thinking of Hypoxia as those symptoms replicate those of what I just experienced 2 days ago and the exact thinking that you are conveying right now.
@Grant_Vicat. I am emdebted to you not to back off but to understand the concept of exactly what a concept of a Hypo really and truly is.
Brother Sam.
 

Grant_Vicat

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Dear Grant_Vicat, Since my Famous on board Hypo Experience I remember that very profound that made you stand out from your previous writing. These Hypos are indeed very very strange. This May be a very simple question to you but you have really stirred me thinking up about Hypos since the last Article of inspiration that earned Kudos from me. I went for a 7 Kilometre walk to my bank today and I did it in low gear. Ever since my Chemotherapy In fall of of, 2014 in the Southern Hemisphere around June of that year this alleged Chemobrain is as real as a Hypo but not in the same terms. Amnesia and “where are the car Keys” is very much different than the unreality is reality syndrome. Of the 30 some odd Neurotransmitters in the Human Brain, I think as I read some of your work that Sugar has a profound effect of nothing even close to Chemobrain. Now the brain shutting down as our result of starvation as you said it well, has really got me thinking. This puts me in the thinking of Hypoxia as those symptoms replicate those of what I just experienced 2 days ago and the exact thinking that you are conveying right now.
@Grant_Vicat. I am emdebted to you not to back off but to understand the concept of exactly what a concept of a Hypo really and truly is.
Brother Sam.
Many thanks Sam, it's very kind of you to put your thoughts on the thread. All the very best, Grant
 

Grant_Vicat

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Good morning my beautiful friend! I hope that you are very well today!
You do know that I am going to write a whole thesis on this topic... I can visualize the full 150 pages dissertation project already...
Regards
Josephine
Hi @Bluemarine Josephine I haven't written a 150 page thesis, but I have written 118 pages (if you include 14 pages of Index) of living with Type1 from the age of 11 months till 4 days before my 55th birthday - all wrapped up in the book in the picture! Hope you succeed!
 
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Grant_Vicat

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I got asked so many times what is like to live with diabetes I ended up writing a book!
With no pump and no continuous glucose monitor, they simply weren't invented when I was diagnosed, I had to manage it old-school style. Being trained as a scientist I documented all my failures and successes, thankfully more success than failure.
So did I, in the picture! What's yours called?
 

Grant_Vicat

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I'm newly diagnosed type 1 and all anyone asks me these days is 'how are the injections going'. They are the easy bit! The blurry eyesight causing me headaches and stopping me driving is a nightmare. Trying to work out how much insulin to have is stressful. Working out which sore finger to prick is tiresome. Oh - and I'll never be able to go out with a small handbag ever again!!
Way back in this thread someone mentioned using the side of the thumb was least painful. I also found the side of my little finger end. Hope all goes as well as possible.
 

Grant_Vicat

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@Smsquire90 I know the feeling of friends dictating what to eat or not! I still get that too, but now I either just tell them to fob off, or if its a friend that has just known and don't know much about T1D, I will explain to them very briefly and quite harshly to be honest that I can eat what I want as long as I'm careful.
I also hate it when I have the stupid feelings that I have when I'm too high - Headache that just makes me want to crawl into a hole and die, feeling so god **** tired I could sleep all day. These are not good combination when I'm trying to do stuff at work before I finish because jesus christ if I sit down for five minutes I'll be asleep!.
Then an hour later I could be having a hypo and can't think properly, can't get my words out right and shaking like hell.
There is no perfect number for this, no bullseye to hit.

A friend has described it to me as a tightrope that I am walking and everyday its trying to balance right to not fall off, knowing how fast or slow I can walk that tightrope before I lose balance altogether.
Hi @evj95 Interesting comments on high readings. Here are some excerpts from the book I'm holding:
I would always know when I was in ketosis, because my breathing became very laboured, all my muscles felt as though I had run ten miles and performed fifty press-ups, I had an overwhelming feeling of nausea, would drink vast amounts of water without slaking my thirst, would shun social contact, and my family would notice the all too familiar reek of nail polish remover or pear drops. In later years I realised that it would cloud my vision. Until 2010 I was the only member of the family not to need glasses or lenses, but when I was standing on Shoreham Station platform, aged 13, I was unable to read the nameplate on the opposite platform. Panic set in. Was I already going blind? Or was I suffering from cataracts? My mother took me to an optician that weekend, who could find little worth discussion. However they charged my mother for some placebo gold rimmed glasses. I later realised that it was blood sugar affecting my eyes. The glasses were to serve as props in School plays.
One of the strangest manifestations of Hyperglycaemia is nonsense talk. Very early in my childhood, I would sit on my parents’ bed and utter “phrases” such as “Ee sassa de diddlydee”, and my father, with his analytical mind, would say “What’s ee sassa?” or “What do you mean diddlydee?” I would collapse into uncontrollable giggling and utter yet more nonsense, all the while being ecstatic until the level rose too high. Even now I catch myself inventing bizarre expressions such as “homuntuline moomeat”. I suppose this is cheaper than Class 1 drugs. It took a while before my father observed that there was a relationship between blood chemistry and mental balance (dare I say normality?) My assessment has been slightly challenged by an utterance I made while asleep, with very low blood sugar. In 2004 I clearly uttered the word “Dursit”, with the stress on the first syllable. Imagine my dismay on discovering that the word already existed in a Thai restaurant in Thistle Street, Edinburgh and in place names in Albania. I shall have to consider copyrights.
High blood sugar and disturbed digestion have already been referred to above, as has uncontrollable temper. Even with moderately high levels such as 10.5mmol/L, I lose my natural patience and become irritated by what are normally trifles. One of my employers commented that diabetics ought not to be crossed after lunchtime! Non-diabetic children are known to behave more excitedly after a “sugar fix”, as anybody with children in their charge will tell you. It is only in the last thirty-nine years that the carbohydrate content has been stated on food and drink. Yet the public don’t usually know how much sugar they are ingesting in a standard can of fizz. There is the equivalent of eight teaspoons of sugar or two thirds of my lunch starch allowance. Certain chocolate bars have thirteen spoons of sugar...To me and similar people, doughnuts, treacle tart and apple crumble are “Death on a plate!” I have also noticed that my nose runs when I am high. Is this because the brain is using this system to get rid of excess sugar, as it does colds?
Probably the most damaging effect of hyperglycaemia is lethargy. Often an overwhelming tiredness can put the patient to sleep extraordinarily quickly, and after maybe three hours sleep there is no sign of benefit. Stress, especially before playing the organ in a big service or concert can have a far reaching effect: Illness, or more irritatingly, when my immune system is fighting a prevalent bug, has a similar outcome. Many such horrors sweep through my work at regular intervals. I rarely show symptoms, but my readings and Insulin regime are increased for maybe days on end.
Bear in mind that this was written in 2009!
 
A

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Australia 1 and Real Life Type 1 Living with @Grant_ Vicat. Dear Forum. I am into my 5th month of Type 1 Diabetes. I wrote a thread or tried to write through a Hypoglycemia event. Much like me new friend Grant, if that is indeed his name I become very very interested the same subject matter that happens in the starvartion of
the Brain of Glucose nourishment.
So when Type 2 came into my life 3.5 years ago it was told to me by my ocologist to brings and aging factor. So I came to this forum incognito. I read and read and read at this forum and the American one with an Australian section all to itself. Getting back to Type 1 Hypos I must say that Grant_Vicat has the mind of an Aerospace engineer as his research is easy to feed on. It was in the last six months that life to me was not going to be good at all. Different doctors that cost real money were making me very angry. Did my Endocrinologist really Understand hypoglycemia or was it a joke. Not I am not implying that doctors are fakes and phonies and anytime Grant wrote to anybody about anything involving glucose indulgence I sat up and took notice of what He wrote. And now I understand and I ruin things for Newbies because I have to say what is real. My life is now terrible. I struggle with Mathematics and Carb counting and insulin measurements to the Tee. But millions in the world today are born Type 1 Diabetic,s. I go to the Scriptures to try to make sense out of the book of Job to make sense of suffering. Hard Questions? Yes indeed. Next week I am setting down with a new team that understands oncology and there Specialty is Diabectic conditions of all kinds. I have used that tight rope analogy many times about life, but oh does it so apply to a diabetic of any type. The Straight and narrow way. Too much of this chemical starts this. Too much of that starts something else. I guess Grant_Vicat that we should be very graceful for all that we have and encourage one another. What do ya think mate!!
Sam Danner.
 

Grant_Vicat

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Australia 1 and Real Life Type 1 Living with @Grant_ Vicat. Dear Forum. I am into my 5th month of Type 1 Diabetes. I wrote a thread or tried to write through a Hypoglycemia event. Much like me new friend Grant, if that is indeed his name I become very very interested the same subject matter that happens in the starvartion of
the Brain of Glucose nourishment.
So when Type 2 came into my life 3.5 years ago it was told to me by my ocologist to brings and aging factor. So I came to this forum incognito. I read and read and read at this forum and the American one with an Australian section all to itself. Getting back to Type 1 Hypos I must say that Grant_Vicat has the mind of an Aerospace engineer as his research is easy to feed on. It was in the last six months that life to me was not going to be good at all. Different doctors that cost real money were making me very angry. Did my Endocrinologist really Understand hypoglycemia or was it a joke. Not I am not implying that doctors are fakes and phonies and anytime Grant wrote to anybody about anything involving glucose indulgence I sat up and took notice of what He wrote. And now I understand and I ruin things for Newbies because I have to say what is real. My life is now terrible. I struggle with Mathematics and Carb counting and insulin measurements to the Tee. But millions in the world today are born Type 1 Diabetic,s. I go to the Scriptures to try to make sense out of the book of Job to make sense of suffering. Hard Questions? Yes indeed. Next week I am setting down with a new team that understands oncology and there Specialty is Diabectic conditions of all kinds. I have used that tight rope analogy many times about life, but oh does it so apply to a diabetic of any type. The Straight and narrow way. Too much of this chemical starts this. Too much of that starts something else. I guess Grant_Vicat that we should be very graceful for all that we have and encourage one another. What do ya think mate!!
Sam Danner.
I've always felt that! Greetings Downunda
 

catapillar

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Quote :- Australia 1, post: 1672241, member: 468233"]The List of things you have are not what I thought which was Cancer. Avascular Necrosis, Total Memory loss, yep. How many years did I have Diabetes, just how many years did I have Type 2 and now Type 1.

Thanks, I've gotta be honest though, that quote doesn't really make things much clearer. As we know, type 2 doesn't turn into type 1. It sound to me, from what little sense I can make of @Australia 1 's postings that he has type 2 diabetes treated with insulin and, wrongly, thinks the insulin treatment makes it type 1. But as I say, I do find a lot of his postings a bit difficult to interpret, which is why I asked him to clarify.
 
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Mike d

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Thanks, I've gotta be honest though, that quote doesn't really make things much clearer. As we know, type 2 doesn't turn into type 1. It sound to me, from what little sense I can make of @Australia 1 's postings that he has type 2 diabetes treated with insulin and, wrongly, thinks the insulin treatment makes it type 1. But as I say, I do find a lot of his postings a bit difficult to interpret, which is why I asked him to clarify.

Agree it's not easy sorting the chaff from the hay, but T2 on insulin seems to fit. Not that I'm anxiously waiting for a reply anytime soon
 

prancer53

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Thanks, I've gotta be honest though, that quote doesn't really make things much clearer. As we know, type 2 doesn't turn into type 1. It sound to me, from what little sense I can make of @Australia 1 's postings that he has type 2 diabetes treated with insulin and, wrongly, thinks the insulin treatment makes it type 1. But as I say, I do find a lot of his postings a bit difficult to interpret, which is why I asked him to clarify.
A bit like my gp who seems to think that my type 1 has turned into type 2 now that I am in my 65th year.....!!! She tells me I have hypos if I eat anything sweet because it promotes the production of more insulin from my pancreas. Never quite know what to say to that---I can hardly correct her, can I? Not as young and brash as I once was.......!!!!!!
 
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prancer53

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* Blessings. I too have trodden a hard path from the days of red and black lines, weighing food, metal and glass syringes kept in surgical spirit and boiled once week.. I went to Reading Festival when I was seventeen and people in the Red Cross tent where I went to rinse my syringe and inject were suspicious....

The insulin pen and bolus with long-lasting insulin regime and (breakthrough!) blood testing meant freedom from eating at set times, test tubes and fizzy pills to test your urine (highly approximate as it was an average over the last however-long-since -you last-peed). Diagnosed November 1958 after going into a coma, oxygen tent, last rights at the age of two, I worked hard to manage my condition once I was old enough - 9 to 10 years old. I envy anyone on a pump and blood glucose reader, as diabetes has had to be in the background of my mind all my adult life. Bless my mum (God rest her) for looking after me so well early on. I had a teenage denial, but came round after the said pen/blood testing meant control was more flexible. My only problem has been arterial disease, particularly blood supply to my legs, but then I smoked for some years. (Risks not so well known or understood then.) Brilliant NHS treatment for this. I am also highly gluten intolerant now - brother and sister both T1 and both coeliac.

What am I saying? Some of us, with the same self-care, may be genetically luckier than others. I am relatively lucky, though with 63% blood supply, after surgery, to my legs, I don't walk so far these days. Age 60, I still work three days a week, and I still have to keep testing my blood, calculating by eye or experience the number of units I should take at a meal. It's always there, and it's always highly experienced guess-work. (Does sex bring your blood glucose down? Exercise does!) A certain spontaneity is sometimes missing, but in my case, I deal with expected things with a suitable dose of insulin or unexpected things slightly retrospectively with minor adjustments to insulin levels or some glucose tablets. As experience of yourself and how your body and diabetes tick along in tandem grows, maybe you just grow accustomed. It can always throw up nasty surprises - an infection, cold, flu, operation - and yes, it's more difficult when you have to give over your control to someone else, and it can be scary. But mostly, for me, I am now still enjoying life, 57 years diabetic T1 and still getting better at playing this game of diabetes management. I don't think we know all the rules or have been given all the counters yet, but goodness me, we're better off than we were.

Good luck and best wishes to you.
 

prancer53

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Also 57 years......nice to meet you (virtually).....!!!!!
 

prancer53

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* Blessings. I too have trodden a hard path from the days of red and black lines, weighing food, metal and glass syringes kept in surgical spirit and boiled once week.. I went to Reading Festival when I was seventeen and people in the Red Cross tent where I went to rinse my syringe and inject were suspicious....

The insulin pen and bolus with long-lasting insulin regime and (breakthrough!) blood testing meant freedom from eating at set times, test tubes and fizzy pills to test your urine (highly approximate as it was an average over the last however-long-since -you last-peed). Diagnosed November 1958 after going into a coma, oxygen tent, last rights at the age of two, I worked hard to manage my condition once I was old enough - 9 to 10 years old. I envy anyone on a pump and blood glucose reader, as diabetes has had to be in the background of my mind all my adult life. Bless my mum (God rest her) for looking after me so well early on. I had a teenage denial, but came round after the said pen/blood testing meant control was more flexible. My only problem has been arterial disease, particularly blood supply to my legs, but then I smoked for some years. (Risks not so well known or understood then.) Brilliant NHS treatment for this. I am also highly gluten intolerant now - brother and sister both T1 and both coeliac.

What am I saying? Some of us, with the same self-care, may be genetically luckier than others. I am relatively lucky, though with 63% blood supply, after surgery, to my legs, I don't walk so far these days. Age 60, I still work three days a week, and I still have to keep testing my blood, calculating by eye or experience the number of units I should take at a meal. It's always there, and it's always highly experienced guess-work. (Does sex bring your blood glucose down? Exercise does!) A certain spontaneity is sometimes missing, but in my case, I deal with expected things with a suitable dose of insulin or unexpected things slightly retrospectively with minor adjustments to insulin levels or some glucose tablets. As experience of yourself and how your body and diabetes tick along in tandem grows, maybe you just grow accustomed. It can always throw up nasty surprises - an infection, cold, flu, operation - and yes, it's more difficult when you have to give over your control to someone else, and it can be scary. But mostly, for me, I am now still enjoying life, 57 years diabetic T1 and still getting better at playing this game of diabetes management. I don't think we know all the rules or have been given all the counters yet, but goodness me, we're better off than we were.

Good luck and best wishes to you.
 

prancer53

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Also 57 years....amazing to have found 2 people on here who have had type 1 as long as I have....Congratulations!! Also went to Reading Festival in the early seventies---just jabbed sitting on grass under a blanket --- back in the day....