How the DOC helped me (after 49yrs of T1)

[robert72]

Great to read everyone's comments about the bad old days! Brings back so many memories. Still waiting for a response on Twitter from anyone with T1 for 49+ years though - where are they all??

There's SO much I couldn't say in a short blog, but have one question for long termers: did anyone have a metal contraption that looked and worked like a gun? You clicked the syringe into it then fired it into the skin and it went in fast! I actually saw one in the medical museum on the Southbank in London recently! Imagine seeing a museum piece that you've actually owned (and is considered a little barbaric now think!). Made me feel ancient....


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I've only clocked up 42 years so can't respond

I used to see that Palmer injector gun in a glass cabinet in the chemists and I remember thinking nopenopenope

 

[Julie1471]

Also I remember that hospitals used to smell like alcohol swabs(clean) all the way through. Now when I wipe my insulin bottle over to draw up for my pump, it brings back a safe feeling, that I know it's clean. Makes me feel safe as I remember wiping the bottle before drawing up with a syringe and cleaning my leg before injecting. I know it sounds freaky(that's just me). But it restores a comfort zone, from years gone.

 

[Jaylee]

My first ever blood meter I put a goth style vampire sticker on it from a freebie in a heavy metal magazine...
My doc looked & thought I was trivialising my condition.. I was just thinking this is for life. Personalise it..

 

[Lisbet]

Wow - so great to see that contraption again - and to remember that smell of surgical spirit. So funny to think of the things that were so much a part of our lives.... LOL lots!!! Thank you for sharing - big hug to the 'old timers' who've been there and done that with me!!


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[Spiker]

(Re the Lament video).

Oh ***. More DUK moral blackmail to fill their bloated coffers with cash. This stuff makes me embarrassed to be a diabetic every time I see it. DUK is one of the richest charities in the UK and they have to peddle this emotive **** to squeeze even more money out of the well meaning, ignorant and gullible public. It honestly makes me sick.

I mean, if DUK actually put any significant part of their money into a T1 cure, they might have a leg to stand on. Instead their funding just keeps the diabetes management industry ticking over. They leave the JDRF to tackle an actual cure. I guess working for a cure is too much like hard work.

 

[Jaylee]

Some of the attitudes of the JDRF D moms i have have encountered have somewhat turned me to a "militant".
The child can adapt better than an an adult in most cases regarding diagnosis....
But, I feel if the child rebels spectacularly against this parental climate? (Which is natural anyway in the teens.)
Then they may regret their actions on reflection in later years...

 

[noblehead]

My grandma & Grandad bought my first blood sugar machine at a cost of a £100 they were living on a pension, and my mum & dad had to go up yo London to buy it, but within in months we couldn't get strips, so had to have BM strips which my mum would cut in half, so you could compare them between xxxx or yyyy. Then Bohringer brought out that machine and it was great and a company brought out the autoclix at the time I was a member of a diabetic group and we got given 1 free, 3 platforms white - tender, yellow- normal & orange-thick. It was great till the spring went :-(. I think I might still have a bm blood machine in he loft(hubby thinks so). Good brings back thoughts. Lisbet I remember that although I never had one, the medical museum was where my parents had to go to get my first blood glucose machine.

I had to pay for my first bg meter Julie, if I'm not mistaken it was around £100, I've not paid for another since and my DSN always gives me the most up to date meter.

The cutting of test strips was a good way of making them go further, I would cut mine into three and compare the results with the colour chart on the side of test strip container, as you say not good memories but memories nonetheless

 

[phoenix]

(Re the Lament video).

Oh ***. More DUK moral blackmail to fill their bloated coffers with cash. This stuff makes me embarrassed to be a diabetic every time I see it. DUK is one of the richest charities in the UK and they have to peddle this emotive **** to squeeze even more money out of the well meaning, ignorant and gullible public. It honestly makes me sick.

I mean, if DUK actually put any significant part of their money into a T1 cure, they might have a leg to stand on. Instead their funding just keeps the diabetes management industry ticking over. They leave the JDRF to tackle an actual cure. I guess working for a cure is too much like hard work.

It is one of the biggest in that it's one of those with an annual income above 10 million but some cats, dogs and animal charities have far greater incomes ( as do charities for other health concerns for example cancer, age related, mental health, arthritis and autism charities )
It gets a couple of million more than the Donkey sanctuary.
http://www.theguardian.com/news/datablog/2012/apr/24/top-1000-charities-donations-britain
The research funds go to a variety of research projects some of which are directed towards a 'cure' These are some I picked our::T1 vaccine, investigation into the immune response, work on slowing the progression of T1 , investigations into islet function. reprogramming T cells to prevent the destruction of islet cells, research aimed at improving islet transplantation .
http://www.diabetes.org.uk/Documents/Research/Research project directory/Research_project_2012.pdf

 

[Spiker]

It is one of the biggest in that it's one of those with an annual income above 10 million but some cats, dogs and animal charities have far greater incomes ( as do charities for other health concerns for example cancer, age related, mental health, arthritis and autism charities )
It gets a couple of million more than the Donkey sanctuary.
http://www.theguardian.com/news/datablog/2012/apr/24/top-1000-charities-donations-britain
The research funds go to a variety of research projects some of which are directed towards a 'cure' These are some I picked our::T1 vaccine, investigation into the immune response, work on slowing the progression of T1 , investigations into islet function. reprogramming T cells to prevent the destruction of islet cells, research aimed at improving islet transplantation .
http://www.diabetes.org.uk/Documents/Research/Research project directory/Research_project_2012.pdf

Thanks for posting that. It's hard to tell from the format of the document which is fundraising-oriented, and the multi year funding is reported over different intervals, but it looks like not more than 5-10% of research is going on T1 prevention, whereas about 95% of marketing to the general public is trading on the 'misery' of T1.

Do you not find this exploitation of children's and mother's 'misery' by DUK to be hypocritical and objectionable?

 

[phoenix]

I don't particularly like it. I don't think you can blame DUK for it though .If you look at the end it was made for CWD UK which is an online community. There is a just giving page but it is no longer active so don't know to which charity they gave any money raised.
Edit these are DUK videos:
http://www.youtube.com/user/diabetesukcharity/videos?view=0&sort=dd&shelf_id=1

 

[Spiker]

Ah OK I thought CWD UK was some kind of DUK affiliate. It's DUK that organise Diabetes Awareness Week right?

 

[phoenix]

Yes, that's their fundraising week.
This is the CWD website. http://www.childrenwithdiabetesuk.org/

 

[lizdeluz]

I used to cut my strips lengthwise into 4!!!! Very proud of myself at the time that I could do this, until the consultant at Gloucester hospital said she doubted if the results were valid on strips cut to pieces. He he!

 

[noblehead]

I used to cut my strips lengthwise into 4!!!! Very proud of myself at the time that I could do this, until the consultant at Gloucester hospital said she doubted if the results were valid on strips cut to pieces. He he!

It was my DSN that said to do it, as you say not as accurate as placing the full strip in the bg meter but it did make a pot of 50 go a long way.

 

[iHs]

I didnt cut the strips that much.......I didnt use them and returned to Clinistix and eventually got a Card meter which had a memory to store 10 bg results

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[Just Laura]

I am Mum to a diabetic 6 year old, who was diagnosed when she was 5.

For what it's worth, I agree totally with most of what you are all saying - the child needs to see their parent dealing with the issue in a way that won't totally freak the out and condemn them to a life of hardship where everything is unfair... all because of their diabetes.
I believe that how you set the stage in the very early days determines the way the child will view the condition and their ability to deal with it and just make it a part of their every day lives.

I actually think that as a result of her diagnosis, my daughter has done more, tried more new things and seen new places as I am so determined that she will lead a full and 'normal' life despite being diabetic.
I also know that her diet is much more healthy & considered as it perhaps would have been!
But would I swap places with her so take it away from her if I could? In a heartbeat.

Now... At the risk of offending anyone (as that certainly isn't why I have posted this) please try and think about how it feels for a parent to see the most precious, cherished thing in their lives so poorly and left facing this for ever.

All we ever (should!) want as parents is for our children to be healthy & happy. We're not all over bearing, neurotic Mums but please try to think about how AWFUL it is for everyone when first diagnosed.

I have never said I know how it feels to be diabetic - because I most certainly don't. And I would never try to pretend that I do. But please don't try and pretend you can imagine how it feels to be mum to a newly diagnosed littlie, unless you have been there.

x

P.S. I haven't even watched the video as I imagine it would make me too cross!


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[Jaylee]

But would I swap places with her so take it away from her if I could? In a heartbeat.


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Sorry for out of context quote.. This stood out I remember my mum saying this 38 years ago..

I empathised then as I do now...

 

[miriamy]

I find laments like this somewhat offensive..

J>

I completely agree with you. This is an incredibly offensive and exploitative bit of marketing. The assumption being that fundraising needs a victim. It's a toxic distortion. Pleurch!


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[debwells]

Great to read everyone's comments about the bad old days! Brings back so many memories. Still waiting for a response on Twitter from anyone with T1 for 49+ years though - where are they all??

There's SO much I couldn't say in a short blog, but have one question for long termers: did anyone have a metal contraption that looked and worked like a gun? You clicked the syringe into it then fired it into the skin and it went in fast! I actually saw one in the medical museum on the Southbank in London recently! Imagine seeing a museum piece that you've actually owned (and is considered a little barbaric now think!). Made me feel ancient....


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[debwells]

Hello Lisbet, yes I do remember having a metal contraption that looked and worked like a gun, I remember it was very painful. I too have had diabetes for 49 years, 50 years for me in September this year.