# The Long and Winding Road



## VicMar (Apr 12, 2017)

Hi All,

I've only just joined the forum, so I haven't read every thread, nor all the messages on this thread, so excuse me if I tread on anyone's toes.

I was diagnosed IDDM ( Insulin Dependant Diabetes Militus - that's what Type 1 used to be called) when I was 9 years old. I'm now approaching 71 so I reckon I might have something to contribute to the forums. I don't claim to know much about diabetes in other people, but I reckon I'm pretty expert about my own.

Back then (1955) Diabetes treatment was a bit primitive. There were no finger-prick BM tests, you had to test your urine with a special kit. I remember the reagent tablet (which identified the sugar content) got very hot when added to the urine so if you didn't remember to put the test tube back into it's holder quick enough you got  burnt fingers.

Insulin needed to be loaded into glass syringes, which in turn had to be boiled. Those burnt fingers were back again.

If I had to go into hospital, which was a fairly common happening whilst they tried to get a growing lad's insulin doses correct, the IV stuff was in glass bottles too. The needles which went into your arm were metal, so you couldn't bend your arm - it was taped to a solid wooden board to stop that.

Between the ages of 9 and 15 (when I started work), I probably spent about 25% of my life in the children's hospital. That % may not be entirely true but my memory sometimes plays tricks since my stroke (@ age 53).

I've read several posts here where Type 1's have expressed non-diabetic's knowledge of diabetes to be very inaccurate and I can vouch for the truth in that statement. The boring part is having to explain what diabetes really means to those who 'knowledgeably' say " You just mustn't eat sugar". Oh, if only eh?

Some messages have said that diabetes makes other illnesses worse. That was certainly true when I caught Chicken Pox. I was covered everywhere with blisters - and I mean everywhere. Even my private little places weren't spared. Consequently I have scars all over the place. They are about the size of drops of water and when asked what they were if I had my shirt off I have been known to say I'd been peppered with a shotgun. Of course that then had to be followed by the real reason which was usually met with "I've never seen that many Chicken Pox scars before".

Up to the age of 15 I went either hypo or hyper so badly that I was away from school and in Hospital several times every year. I missed taking the eleven plus exam and was put into the lowest class when I went to senior school. It didn't take long to get me moved from the 'F' stream up to 'B'. I never went anywhere without my Skells tin full of Dextrose Tablets. I still carry a packet of Dextrose tablets today when I leave the house.

Being diabetic didn't stop me getting the same discipline as the other lads in my class, but somehow I used to get a 'bad enough to send me home' hypo just before woodwork for a few weeks just after I was strapped for cutting myself on a chisel. I thought first aid should have come before discipline. Can stress cause a hypo? You bet!

My last year at school was uneventful except for being kept in hospital for 3 weeks when my appendix burst and as soon as I went back to school, riding my bike into a roadworks ditch and breaking my arm.

Starting work in 1961 when there was virtually full employment meant I could move from job to job pretty much as I felt like. I remember one time when I left a job in the morning and found myself another job before I got home that evening. Choosing whether to tell my employers about my diabetes depended on the job.

Building labourer - Don't tell them 'cos they won't employ you. Office and shop work - tell 'em and so on. Bus Conductor - No, Bus Driver (different firm) - Yes otherwise insurance complications.

Health wise I wasn't too bad until I contracted Driver's disease (Pilonidal Sinus) in 1973. The last thing a driver needs is an abscess at the base of the spine. I needed Laser treatment for Retinopathy in 1974 and then I developed Hydradenitis and over the next 10 years had multiple surgeries trying to eradicate it. Unfortunately it still flares up periodically to this  today.

Things really took a downward trend when in 1988 Peripheral Neuropathy struck. I had to stop Karate because without the control of the muscles in my feet and lower legs my balance disappeared. I spent more time on the dojo floor than standing up. I couldn't continue to play Guitar because my hands wouldn't do what my brain told them to do. By the end of 1989 it was so bad I was medically retired from my HEO post at BT.

Once I stopped keeping as fit as I had until then, my health really suffered. I developed COPD, had my Gall Bladder removed and topped all that by having a brain-stem stroke in 1999 followed very soon by Autonomic Neuropathy.

Some more Laser treatment and a Colostomy followed in 2000. With Autonomic Neuropathy all control of my digestive tract disappeared. It's quite embarrassing to be in a Supermarket or Bank queue when the final part of your digestive tract functions of it's own accord. I'll leave the details to your imagination.

In 2001 My Doctor said it wasn't surprising that I was clinically depressed.

2007 Found me with an ulcerated stomach and 2009 saw my bones start to lose their strength.  I forgot to mention the unsuccessful operation on my spine for my Sciatica.

2012 I developed Glaucoma in both eyes and finally just to top it all in 2015 I was diagnosed with CML (a form of Leukaemia). I asked my Doctor if it was fatal and he replied, "You won't live long enough for _that_ to kill you". Kiwi Doctors do have a strange sense of humour.

I've left out some of the more boring stuff, but I hope none of you readers feel like topping yourselves after this lot.

There are 2 things which I consider most important for diabetes sufferers:

1.  Don't be a Diabetic, be a person who has diabetes. You control it, not it you.



2.  Make sure your sense of humour remains intact. Without it diabetes is a rotten companion.

Cheers,

Vic


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## grovesy (Apr 12, 2017)

Welcome.


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## Steff (Apr 12, 2017)

Hi vicmar 
A very warm welcome to the forum wise words indeed


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## Amigo (Apr 12, 2017)

Wow VicMar, you're a true health warrior in every sense of the word. You've got to be awarded the longest and most complex list of health conditions we've ever seen on here! 

And yet you survive to fight another day. I hope you've managed to crack the depression though because that overarches everything and colours it black.

I'm glad you've managed to retain your sense of humour. With your luck I don't supppose you bother with the lottery! 

I think this saying probably sums you up however;

'I survived because the fire inside me burned brighter than the fire around me.'

Well done you and long may you continue the good fight on all health fronts. Best wishes, Amigo


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## Ljc (Apr 12, 2017)

Hi VicMar. Welcome, I agree very wise words.  I look forward to seeing you around here. I agree most heartily with 1 and 2


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## VicMar (Apr 12, 2017)

Hi again,

Thanks for all your 'welcomes'. 

@ Amigo: The list is twice as long as I included here, but as I said, I didn't want to make it even more boring. Fortunately the depression didn't last and I consider myself clear of it now. My sense of humour has got me into trouble occasionally but I refuse to go under. We still do the lottery and just wait to see what we do when (not even if) we win the jackpot. There are so many folks out there who we could help. I've been reading about 'Smart Insulin'. I wonder if it'll be available in my lifetime. I'd even put myself forward as a Guinea Pig.

Cheers,

Vic


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## Grannylorraine (Apr 12, 2017)

Welcome.


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## Lucy Honeychurch (Apr 12, 2017)

Hi and welcome  reading your history was very interesting.


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## VicMar (Apr 12, 2017)

I've been using Novorapid and Levermir for a few years now. The only problem I've had, down to me doing things on automatic pilot, is giving myself Novorapid before going to bed instead of Levermir. The ambulance crew said I'm not the only one they've seen do it.


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## Ljc (Apr 12, 2017)

Oh noooo. Mind you quite a few of us have visited the idiots club a time or two, three umm ....


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## Wirrallass (Apr 12, 2017)

Hi VicMar and a very warm welcome to our forum - glad you found us - I found your profile both interesting & enlightening yet sad at the same time - but I'm surmising you're not seeking pity here - you must have the strength of an ox to overcome all that you have since your young life  - but so sorry to hear you had to bravely endure all that life dealt you in the process  - life isn't fair -  how you have retained a sense of humour throughout all this I really don't know but on the other hand I do believe that injecting a little humour occasionly - and when appropriate - into a sometimes hopeless situation may lift ones spirits just a little. I wish you well on your diabetes journey - stay strong and take good care of yourself VicMar.
WL.

Dx Type 2 April 2016
Metformin withdrawn
Diet control and exercise only


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## Flower (Apr 12, 2017)

Hello and welcome VicMar  

You've certainly seen a fair few changes over the decades. I can remember the days of urine testing with the reagent tablets that made the test tube too hot to touch. I used to feel like a boffin scientist as a kid watching the contents of the test tube froth and change colour. It didn't tell me anything about how I felt at that moment or if I was about to go hypo! Thank goodness for the invention of home blood glucose testing 

I agree that diabetes can be a rotten companion without a sense of humour to get you through the rough times. Congratulations on getting through 60+ years


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## Lindarose (Apr 12, 2017)

Hi VicMar and a warm welcome to you. 
I'm actually at work right now but as having a quiet spell was reading your post. I must say I found it so interesting and although saddened by what youve been through it also made me smile. You obviously have that way about you to recount events with humour! 
It doesn't sound like much will keep you down for long! And I'm so glad too. Look forward t hearing more from you


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## VicMar (Apr 12, 2017)

Thanks for all the lovely welcomes. I feel among friends.

@ Flower, You're not doing too bad with your 40th anniversary coming up. I often wonder how many 60+ IDDMs there are still about.


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## Northerner (Apr 13, 2017)

Great to have you with is Vic  I think you are probably our only 60+ IDDM, although we do have quite a few with 50+ years behind them 

Always good to hear how things have changed over the years


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## VicMar (Apr 13, 2017)

> I think you are probably our only 60+ IDDM


If not I expect they'll give us a shout now.

Vic


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## Bubbsie (Apr 14, 2017)

VicMar said:


> Hi All,
> 
> I've only just joined the forum, so I haven't read every thread, nor all the messages on this thread, so excuse me if I tread on anyone's toes.
> 
> ...


Vic...this thread wasn't at all what I thought it would be...the title drew me in...the content surprised me as I started to read it...then I became engrossed in it...good god...who would have thought how archaic/medieval/horrific (although absolutely necessary) treatment was for diabetes 'back in the day'...how on earth have you managed to get through so much...retained your senses (no disrespect) and sense of humour...much of it made me winch...wondered what would come next...felt so disheartened as yet another health problem emerged...however...some parts made me laugh out loud (Bank queue & Supermarket)...hopefully that was the intention... if not apologies in advance....what a warrior you are...unbelievable...no...I don't feel like topping myself after reading it...I feel grateful I have access to more advanced... far less invasive/painful treatment...I feel determined not to let my condition define me ( I am a person who has diabetes)...my sense of humour remains intact...now pondering on the 'boring stuff' you refer to...fortunately have sufficient left (just) of my manners not to ask?...suicidal...absolutely not...encouraged...wanting to hear more.


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## VicMar (Apr 14, 2017)

Hi Bubbsie,

Thanks for your kind words. It looks like you received my message in the same frame of mind as mine when I wrote it. I do tend to look on the bright side, I think I'm referred to as a 'pragmatist'. If I can do something I do it, if I can't change something I accept it and do the best I can in the circumstances.

For example: I was a 'Glut' baby. When the fighters and P.O.Ws came home from WW11 in 1945 it resulted in us 1946 babies - hence Glut. This is probably not the place to explain what a 'grudge' baby was, perhaps I'll put that in my autobiography (which will never be written). However it does explain why there were 35 pupils in my class at school.

I did make a stand regarding diabetes ruling my life: I've made a point in doing a lot of things which a lot of diabetics wouldn't have attempted. When I applied to be a bus driver my GP looked at the form and as it didn't ask directly if I was diabetic, he signed me off as 'Not having a medical condition which would stop me driving a bus'. That couldn't happen these days because there is a direct question about diabetes on the application form and as far as I know we aren't allowed to drive buses now under EU law.

The same applied when I (was medically retired from BT and) wanted to take the Brighton and Hove 'Knowledge' to be a taxi driver. I had to argue my point with the council's Health boss. I finally won her over when, backed up with lots of anecdotes, I convinced her that I was monitored by health professionals more closely than the rest of the local taxi drivers.

I declared my Diabetes when I later trained as a Driving Instructor. Being able to point out a Driving Test Examiner who was diabetic got me past that hurdle. Much as I enjoyed being an ADI it had to stop when I had my stoke. I was already experiencing the peripheral neuropathy in my legs, but I was still able to drive as long as I could concentrate on it. Show me an ADI who doesn't concentrate and I'll show you his dented car.

This seems to be a second chapter to the L&WR, so I'd better stop before my whole life story gets included.

Best regards,

Vic


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## Bubbsie (Apr 14, 2017)

VicMar said:


> Hi Bubbsie,
> 
> Thanks for your kind words. It looks like you received my message in the same frame of mind as mine when I wrote it. I do tend to look on the bright side, I think I'm referred to as a 'pragmatist'. If I can do something I do it, if I can't change something I accept it and do the best I can in the circumstances.
> 
> ...


You've done it now Vic...will have to look up 'Glut' & 'Grudge' babies...although believe I can possibly guess what a 'grudge' baby is...sparked my interest...tragic really that anyone would refer to a child a  'grudge' or a 'glut' baby...I haven't had diabetes for long...had a number of health conditions crop up since June last year...one in particular very worrying...fortunately results benign...consider myself fortunate in the extreme...some of the treatments were so invasive...had to laugh at many of the circumstances I found myself (not for general publication)...fortunately I would not have to declare my diabetes for work...not relevant...besides self employed...yes...it is a battle fighting the system sometimes...even navigating my local surgery's protocol is so contentious...finally after several discussions...and a letter...I have their attention...love the innovative way you 'dealt' with the local authorities...if not asked...then not relevant...absolutely...no novel...shame...likely to be a good read...possibly a blog...why not?...you've already started...keep posting!


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## grovesy (Apr 14, 2017)

Bubbsie said:


> You've done it now Vic...will have to look up 'Glut' & 'Grudge' babies...although believe I can possibly guess what a 'grudge' baby is...sparked my interest...tragic really that anyone would refer to a child a  'grudge' or a 'glut' baby...I haven't had diabetes for long...had a number of health conditions crop up since June last year...one in particular very worrying...fortunately results benign...consider myself fortunate in the extreme...some of the treatments were so invasive...had to laugh at many of the circumstances I found myself (not for general publication)...fortunately I would not have to declare my diabetes for work...not relevant...besides self employed...yes...it is a battle fighting the system sometimes...even navigating my local surgery's protocol is so contentious...finally after several discussions...and a letter...I have their attention...love the innovative way you 'dealt' with the local authorities...if not asked...then not relevant...absolutely...no novel...shame...likely to be a good read...possibly a blog...why not?...you've already started...keep posting!


I have not heard of either of thoose terms either.


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## VicMar (Apr 14, 2017)

Glut Babies are easy to understand. 1945 lots of men returning from the war being greeted by their wives, resulting in a glut of babies born in 1946.

Grudge Babies are part of a very rude joke. I won't explain here because I don't want to fall foul of list rules.

Vic


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## Ditto (Apr 14, 2017)

Hello and welcome VicMar 

I thought a glut only applied to marrows!


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## Bubbsie (Apr 14, 2017)

VicMar said:


> Glut Babies are easy to understand. 1945 lots of men returning from the war being greeted by their wives, resulting in a glut of babies born in 1946.
> 
> Grudge Babies are part of a very rude joke. I won't explain here because I don't want to fall foul of list rules.
> 
> Vic


No need Vic...just found it...pretty mild by todays standards


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## Matt Cycle (Apr 15, 2017)

Loved reading that Vic and welcome to the forum.   You've got a great sense of humour after some tough times and I'm like you in that I think I know my own diabetes although it still throws up the odd trick to keep me on my toes and I suppose I'll always be learning really.  Incidentally, it was still called IDDM when I was diagnosed - 31 years after you.


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