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

Lisbet

Well-Known Member
Messages
74
Location
Outer London, UK
Type of diabetes
Type 1
Treatment type
Insulin
Yesterday my first - possibly my only! - blog was published on the DOC (diabetes online community). I have had T 1 for nearly 5 decades but have learned more in the last 6 mtgs online than I did in several previous decades. If you have struggled and need support, as this forum shows, there are plenty of people out there who can help you build your knowledge and confidence so that diabetes will not be your enemy or defeat you! Do have a read www.the-grumpy-pumper.com and let me know what you think! Yikes, am feeling quite naked having done this... but hope it might help just one other person.
 
Nice write up Lisbet.

I've been T1 for nearly 38 years & only got into this malarky when I got roped into a JDRF fundraiser with my band on Facebook a year back...
https://www.facebook.com/RockDiabetes
Like you I can't believe I have come though this relatively healthy (I'm 45.) after a few dodgy periods in my life.
Some of the "newbies" on here seem to have it sussed. Which is encouraging regarding some of the ideas that crop up on this forum.

I have to agree with you regarding the worries of parents with newly diagnosed kids.. Back in my day it was just a case of "now we know what's wrong & know how to treat it."
I find laments like this somewhat offensive..
All the best.

J>
 
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Thanks Jaylee - glad it rang some bells! I worry SO much about the neurosis that I fear parents will inspire. As you say, we just got on with it, but there was no technology or blood testing to cause concerns I guess. I just always assumed I'd be ok and didn't fret about it cos it wasn't going to go away! I'm sure it's fear that causes folk to worry but Drs should give the emotional support reqd so that newbies are confident to manage their feelings - and consequently their D control - better. (Yes, there's some really odd posts on this forum - scary stuff for newbies...)


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OMG - just watched that terrible YouTube. God help those kids is all I can say (and get the parents some support away from the kids, who will find it far more difficult to cope if they live close to such negative attitudes!) Diabetes does NOT NEED TO BE so scary mums - your kids will be just fine if you relax and take care!! Look at me....


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My fear is the amount of "rebellion" these kids will do to retaliate against the constant climate of parental neurosis..?
I've seen enough of it at the JDRF stuff.. I appreciate this concern from parents (mothers.) is a manifestation of the love. But no child likes to feel like "the only gay in the village"..
 
Hi Lisbet, I agree totally with everything you've touched on. I've been T1 for 30 years and neither my parents nor me had any sort of instruction on how to count carbs except for a poster that the clinic gave my mum with about 15 different foods on it, giving their 'exchange' value. My mum took care of it all until I was old enough to take over and to this day I cannot imagine the worry that she must have felt. When I started to look after my own diabetes as a teenager, and for the two decades since then, I was, without knowing it, totally naive about most things diabetes-related. My consultant thought I was well controlled but like you, I think I've just been fortunate and managed to muddle on through. It was only when I got my pump that I began to learn anything about carbs, complex carbs, insulin ratios etc etc and even though I've only been on a pump a few short months I have no idea how I managed to survive the last 30 years. My knowledge today is all down to this forum and the wisdom of the people on it. I think myself very lucky not just to have found this website, but to have made it through the last 3 decades relatively unscathed.
 
I have to say that clicking on that link made me get really upset and angry that young children are using bolus basal instead of twice daily insulin....totally unnecessary and if given a choice Im sure most people would rather monitor their carb intake at meals than give fast acting bolus with the idea of being able

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Eat whatever they want. All very well, but fast acting bolus does bg to lower with the risk of hypos being high....hence the reason why carb counting using ratios started to become desirable.....it was done to make a bad regime appear to be good.
Im very glad that when I was at school I was able to inject once daily with Lente insulin and just remember to eat set amounts of carb and test my urine 3 times per day. I had about 3 daytime hypos per year and about 2 nightime ones. Heaven compared to how todays diabetics deal with food and insulin. I didnt change to twice daily insulin until I was 21 and had a fairly good life managing diabetes

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I recognise your description of how things were 30 years ago for newly-diagnosed diabetics, and, like you, I was naive and somehow have muddled through, a difference being that I was 30 when diagnosed type 1 and preoccupied with being a mum to a toddler and a baby rather than with my own health. Like you, I sometimes wonder how I survived, I haven't controlled my diabetes very well and never acquired the confidence to control ratios of basal, bolus, and food. I'm pleased to have found this forum and to benefit from the very good advice on here. I agree with other posts above that there is some stuff on here that could be scary for newbies, but there are plenty of knowledgeable and experienced diabetics on here who keep a weather eye open for this stuff, ready to support those who feel insecure.
 
That is a good blog post Lisbet and probably echo's what everyone feels in the DOC.

Diabetes, like everything else is a big learning curve and for 99% of the time we are left to get on with it ourselves, however good or bad someone's diabetes team are they cannot be there 24/7 and that is where places like the DOC play there part, no matter how long someone has lived with diabetes we can all learn from one-another by sharing our experiences and offering up advice.

Keep doing what your doing
 

I've avoided this 'lament' until just now, I'm not quite sure why. So, I've just watched it for the first time. I haven't been in the situation of these mothers, I was 29 or 30 when diagnosed, but even so, I remember my mother's face when I told her I'd been diagnosed type 1. I know that instinctively I made sure she felt that I could cope perfectly well, and, actually, I think that the need to reassure her helped me to help myself. In a way, however, I think the timing of my diagnosis caused me to be too nonchalant about the dangers of the disease, and that it's only now that I'm really starting to find time to take care of myself.
It's hard to put into words what's wrong with the 'lament': I really feel for all these mothers and accept entirely the truth of what they're saying. I think the problem with the clip is that it's not a properly balanced take on the subject, and that it says nothing about the joy of having a child, diabetic or not.
It dwells only on the negative - in order to raise money. I think that's why it could be considered offensive.
 

I was diagnosed on my 8th birthday at the beginning of the school summer holiday.
After coming out of hospital i went from the practice orange to my leg with a big glass syringe.
Laying off the sweets, i peed in a chemistry set & comparing the result against a Dulux wall chart keeping track in a pint sized green history book. (orange was bad news.)

What offends me about the "lament" of these "D moms" highlighted in the video is the "diabetic by proxy" & grieving of these women.. How are the dads fairing in all of this.. & more importantly the child that they apear so disappointed in...? It all appears to be about the mother..

As a child or if indeed an adult, i had seen my own mother documented like this? My self confidence would have been shattered regarding a condition i neither brought upon myself or entertained...

I could understand it if the child had stolen a car..!.
 

I was diagnosed just before my 10th birthday, my mum took me to see my GP who stated I was perfectly fit and healthy for a 7yr old Lol. They told my mum she was over concerned, they did a water test and told my mum I was fine for school. How wrong they were. My mum hated injections and still does and she nearly passed out after being taught to inject. But I remember the testing kits and the first blood glucose strips made by Bohringer Manhiem(BM's, for short) and the first finger pricker and the first testing machine apply blood at 1min wipe blood of, then wait another min then insert the strip. And so many carbs for breakfast,snack,lunch afternoon snack, tea and bedtime snack. I think I'm glad I was diagnosed back then only 2 jabs a day, then and an exploding orange, that went every where, when it got knocked of the side, the ward floor was covered opps. I don't think I could handle being diagnosed now, so much more to take in and deal with.
 
Hi Lisbet

Very enjoyable blog, I agree with what you say. I have muddled through for the past 36 years and only in the last few years since pumps became more common and forums developed have I really started to get it.

I was diagnosed in the 70s my parents told me I shouldn't tell anyone I had diabetes, I assumed it was because I had done something awful to deserve it. The urine tests meant very little to me, the test tube went either orange or blue. One thing I clearly remember about being diagnosed was being forced to go hypo before being sent home from hospital. I used carbohydrate exchanges and blundered along. I still have never done a carbohydrate counting course but have educated myself through the DOC and reading, I was the only person on a pump 12 years ago at my then hospital and the nurse used to say that I would have to teach her what I found out as I went along. Sadly my years of rebellion didn't go smoothly and I ended up losing my sight. I have a small amount of sight in one eye.

I had a discussion with a drugs rep at the pump clinic and we were saying how despite the lack of home monitoring in previous decades we are still here. It was a real revelation to me reading on forums that there was no getting it right and that others struggled just as much me.

I find the lament of the mothers quite distressing, it is a manageable condition with ever increasing ways to monitor and control it. My Mum used to tell me not to make a fuss, I remember one hypo when she said "don't you dare do that again". No weeping over my situation!
 
Yep, I got memories of the GP at the time fobbing my mum off with my dad waiting outside in the car.. Then getting taken round the local kiddie ward for a second opinion & admitted straight away..

The only stuff my mum worried about when I was in my teens was lecturing me on making sure drug addicts didn't take my needles & use a condom to stop getting girls pregnant.. "Two if necessary or a Wellington boot". Lol (I have 3 sisters.)

Don't get me wrong, my mum & I are close. Her view was as long as my path was healthy & happy....
 


The Bohringer Manhiem meter, 2 minutes to take bg reading compared to 10 seconds and less now. I thought that meter was the Bee's Knee's having being using the Clinitest Kit, wish I'd kept it for old times sake but sadly didn't.

My consultant wouldn't let me home until I'd mastered injecting insulin, like you Julie we had to practise on an orange first.
 
I too can remember being made to have a hypo before being allowed home from hospital as an 8 year old. I didn't get the sweats or anything, just kept laughing at everything the nurse said. My parents said to her "Is this all it is? But she laughs all the time anyway. How will we know?!?!?!" I can remember it vividly (which is odd in itself IF I was in fact hypo). It all seems so long ago now. I wonder if times have changed for the treatment of newly diagnosed T1 children in hospital? They only taught my parents how to do my injections, and how to prick my finger without a device just in case my finger pricker broke. My dad did it and really hurt me and he still remembers the fear he felt doing it 30 years on. I had to have a district nurse visit me at home for weeks to teach me how to inject. I absolutely refused to do it! I can see myself as a stubborn 8 year old completely ignoring her! Poor lady!
 
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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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.
 
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