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



I read this yesterday, and for a hard faced bloke was surprised to see a couple of tears land on my keyboard.
 
My exerience of living with type1 diabetes for 45 years.... well my memory is broken, I read today about testing urine with tablets which I can but just remember, the guilotine I just remember (Dr Lillington gave me that he was my favourite Diabetic Dr 1979 I think) and talk of coma's, I have had erm 5-8 episodes of this which I do not like to think about or tbh can remember any of them or the coming around of them but I Do remeber shame I have felt when having 2 in public and coming round in a hospital. In my old job my boss was full up to date with diabetes as I kept her upto date etc, the new job I am in well thats totally different, I tell them I'm hypo they just look at me and I sometimes feel like just not treating it so they can deal with the fallout from it..... Hypo's in public places ......... I have had 7 biggies as far as I know ...... private bad hypos ............ maybe 25-30 (this was when I was younger and not testing and drinking alot )...................... rushed into hospital 8 times ............ now suffer from Diabetic neuropathy, Hyponatraemia, Thyrotoxicosis, Bilateral cataracts, Total prosthetic replacement of hip joint (right Hip)
. Avascular necrosis of bone (left hip), Acute exacerbation of chronic obstructive airways disease (non diabetic related), maculopathy, I could go on but writing this is erm disturbing if yo know what I mean~?.......... I like to think of myself as normal (*** is that) haha
 
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Big_Col said:
Pros, free prescriptions, cons, getting up half hour earlier in the morning.
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I had to laugh when diagnosed and the nurse said "the really good news is that you now don't have to pay for any precriptions!".
I'd never had a prescription in my life so I struggled to take the positive out of it.
I suppose I should be grateful anyway....as the OP says, in most countries, you'd be paying for the insulin, needles, strips etc. either subsidised or at retail price.
 
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.
 
saw this connection too from a page on dementia. either being a diabetic or... well i suppose you're a diabetic if you have too much sugar in your blood. hope more research is done on this. i'm honestly afraid for my parents.
 
Circuspony said:
I thought that too! My toes might not be pretty but they're all mine and I want to keep them!
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I’ve got nine so I assume that between us we have 19, but with care you can keep all of your digits. I blame loosing mine on my border collie, I took him out a walk and just put my lace in my shoe and hey presto blister, ulcer, 6 weeks of iv antibiotics then amputation. I must say the useless chiropractor was probably to blame she just put a plaster on it and come back in a week, it then broke down and my leg started to swell but she continued and what is the absolute irony I trusted in her. I still have 10 fingers and my own hair so I’m still ahead.
 
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?

Yes it could be
 
Are blisters something I need to be scared of?

This is diabetes: exercise, except the drugs won't let you, and don't get blisters or you'll have your toes amputated? Is that what it is?
 
Hello I am new to the forum. Ive had Type 1 for 43 years, in the USA, My big problems did not come until this past year after having to have 2 surgeries to remove my all my female organs, due to severe endometriosis. I was told that because organs are physically removed, it could affect my intestines etc . I have had pain for the past year and have just been diagnosed with hiatal hernia and gastritis. I also might have to have surgery again as a piece of the tissue from the ovary may have been left and regenerated itself...yes it happens. I feel like a different person living in this body. My mind has always been alert and bright, but now I feel like I'm in a fog all the time.My blood sugars are ok, but I don't seem to see a pattern in them and sometimes they are high for no reason. I wasn't sure what forum to compare notes with this on. I would like to talk to any T1 women who have had hysterectomies.
 
I forgot that a challenge I'm finding is to decide whether the instant emotional feeling is due to blood sugar, or Hormone levels. This year it seems that any change in my blood sugar just completely whacks me out emotionally
 
I just want to say that your post has connected with me so much. Thankyou. I dont live physically with t1 diabetes but i do live it emotionally and psychologically through my daughter as her primary carer. EVERYTHING every word resonates with me. Thankyou so much for sharing. You make a difference you truly do. x
 
Gaz-M said:
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?

Yes it could be
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Gaz-M. I have had 2 Cancers in the Last 3 years with Full Chemotherapy and during that time in about June 2014 I became a Type 2 and this very month January 2018, my endocrinologist told me that my Pancreas was making less and less insulin. But this is my biggest issue=Memory!!! It is past very bad. I am 64 and it should not be like this. I put things in special places and then I am sure to look at this hidden spot over and over and sure enough I can not find anything. I think, this is Cancer, this is Stress, this is Post Chemotherapy, this is drug related and etc. Then I came across this Forum and saw your post. My BG is 4.7 to 11.0 mmol and I do the super low carb meals and drink just water and have to find the right mounts of Novorapid insulin to get everything in order. I forget where my test strips are ??? Is this the memory loss you speak of or Aging or all of the above?
 
Oh Yes, Needless to say, I hereby join the Type 1 Group. I am not living a life. I exist and eat, exercise 3 to 5 Kilometres a day and study the Bible and Sleep.
 
I can relate. Diagnosed at 5, now 29, basal bolus has steadily destabilised my blood sugar control. I have now crashed my car TWICE in a year from a hypo. It doesn't get easier.
Here in the UK, type 1 cases are eclipsed by type 2 by a ratio of 9:1 at least. Type 2 was originally considered an adult disease, but the explosion in type 2 cases has shifted the focus to environmental factors - namely fatty and sugary foods. As such, whenever you say diabetes the thought that crosses a lot of minds is "lose some weight". I have very little doubt that the consensus has been echoed in the Philippines, and the myriad causes of type 1 must have got lost in the relay of information as it has here.
Case in point, you can't go a week without seeing some attention-grabbing front page headline (Express, mainly) saying "New Tool for Fighting Against Diabetes" or some such tripe. It takes no more than a cursory glance ti see that it is all about type 2. That pretty much sums up the public acknowledgement of diabetes in the UK.
 
Hi @himtoo, I could literally send a whole book, but here are some extracts! First is about Hyperglycaemia:

As in so many instances medically, this is a dyslexic’s nightmare derived from three Greek words, Hyper (above), Glycos (sweet, as in Glucose) and (H)aemia (blood), and is the bane of all diabetics. Egyptian papyrus indicates that they knew about sugar in urine even before the Greeks, who coined the word diabetes, which means “a flowing through.” Yes, I’m afraid “doctors” displayed weird fetishes even then. Who in their right mind would dream of tasting any urine, let alone a complete stranger’s? Toddlers perhaps? But I am eternally grateful they did. This meant that until 1978, the only way a diabetic would have any clue (however inaccurate) of their sugar level was by testing urine. So from my first year I was the owner of my own “chemistry set” made by Ames, of Stoke Poges (wonderful name) called Clinitest. There was a stand for several tubes (I would guess this version was designed for laboratory or hospital use), 2 tubes, 2 little droppers with remarkably thick rubber, and a prescribed bottle of Clinitest reagent tablets which would fizz engagingly at the bottom of the tube (which contained five drops of urine and ten of water), changing the urine either to deep blue (no glucose present), army green (trace) camel (1%) orange (2%) and brick red to brown any percentage above. That is when Ketostix would be dipped into the urine to see the result. 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? [Beginning of paragraph refers to acute diarrhoea caused by either excessively high blood sugar or highs over a long period. Not discussed at any clinic in 54 years of Type 1 apart from in 1985 when my GP referred me to the local hospital to investigate its cause]


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. Before blood sugar meters in the late seventies, my parents used to make me run “round the block”. Unbeknown to them, I should have taken an extra injection of fast acting Insulin and waited for the result. Blood sugar meters have progressed enormously in thirty-five years. When I first encountered one in 1978, on loan from King’s College Hospital, University of London, they would not have fitted in any pocket, nor even in the average handbag. Strips were prohibitively expensive, working out at £1 each. The Hospital very kindly supplied me with strips in my capacity of bankrupt student and weekly visitor. I remember taking the machine back to my room in Hall and a Rugby playing Chemistry undergraduate asking if he could test his own blood sugar. It was quite amusing to see a hulk of a man recoil when I told him he would need to obtain blood from a fingertip or ear lobe. His inability to carry this out made me feel momentarily superior. When dealing with high readings I have worked out a scale, which usually works for me, but not necessarily for others. For readings of 10 – 13mmol/L, I add 10% of my normal quick acting dose of Insulin.

14 - 16 mmol/L 40%

17 - 18 mmol/L 50%

19 - 22 mmol/L 60%

23 - 24 mmol/L 80%

Anything above I add 100%

Sometimes I can be caught out. Either the Insulin is a duff batch, or something else has artificially raised the reading. It could be that instead of injecting Insulin, the patient is only receiving air. This is now a much easier mistake to make since the rubber disk at the top of the phial may have a small cylindrical channel inside which can stop liquid entering the syringe. I now draw out a fraction more than I need to ensure that expelled liquid appears. Slow acting is cloudy and therefore visible when it mixes with the clear fast acting. 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. Diabetics are advised to have a ‘flu jab every autumn, but every time I do, the diabetes is thrown out of balance. The Old Enemy always wins. Another cause of Hyperglycaemia is over-use of injection sites. I injected into my thighs from 1966 – 1985 and many areas had become more like hard knobbly rubber. They had become de-sensitised and therefore less likely to be a challenge. The problem is that the Insulin is eventually released, but not necessarily at the expected time. This can lead to waves of Hypoglycaemia. [To be followed]



 
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 glucose 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.
 

Chemo fog is well known but also applies in general to all patients with cancer not just chemo treated...they put some of it down to concentration... not memory as such.

Also there is help through cancer/macmilan centres for brain fogs...
 

This is a work of wonder that you wrote @Grant_ Vicat and I fully relate to everything that was written. Keep the Faith and push on my brother..
A Word from Australia.
 
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