Being a D mum

[Adrienne]

Hiya

So it appears that not many people have any idea what its like being a d mum or d dad for that matter. No-one may be interested of course which is absolutely fine.

As a d mum, I admit openly that I have no idea what it feels like physically or emotionally to have diabetes myself. I know from what I do and see that I don't want it. I know that if I could take it from my daughter, I would but I can't. I know emotionally and physically what it feels like to be a D mum in the noughties so for myself and my daughter from the year 2000 to date. The change in those 13 years has been immense technologically wise and knowledge about diabetes and knowledge is power.

If anyone has any questions then I and I'm sure some others may appear, would be more than happy to answer them, however trivial or major. I won't however justify myself, what I do or what I claim as that is not what this is about. I will be honest though as the more awareness about impact on families the better.

Also if there are no questions then that is also absolutely fine and I'm more than happy for this thread to just run to the bottom of the list and then off it, really I am.

 

[pgcity]

I think you do an amazing job. I am type one and a mother and I am so thankful that it is me with diabetes rather than my son. Fingers crossed it stays that way.

 

[Twitchy]

I think you do an amazing job. I am type one and a mother and I am so thankful that it is me with diabetes rather than my son. Fingers crossed it stays that way.

Ditto that! 🙂

 

[everydayupsanddowns]

Parents of CWD do an amazing job. Hats off to you all.

 

[Flutterby]

I know my mum and dad went through hell in the 70's and 80's trying to protect me from inept doctors and others who really had no idea. When you are a child you don't really appreciate all the time, energy - both physical and emotional - that goes into it but it is a huge task. I know mum felt under a lot of pressure to "get it right" in those days and it was very difficult indeed. Nothing about diabetes has changed except better monitoring at home and of course insulin pumps - and whilst these are fantastic improvements - there is a price to pay in the time, education and constant vigilance required. when you actually stop to think of all parents have to do, it is a full time job in itself. Well done all the mums and dads on here.

 

[Steff]

I've refrained from commenting on the Dla thread 2 reasons I don't feel I know anything about it so I won't comment on there secondly I would never jump to any conclusions or make assumptions on anything a parent of a t1 diabetic goes through day in day out, if I could I would take any child's diabetes if it meant they didn't have it anymore, every parent I see post on here gets my full admiration and praise they do a sterling job coping with all the trails and tribulations that diabetes bring and if I had a cap on I would doff it to each and every one of them.

 

[newbs]

I think you do an amazing job. I am type one and a mother and I am so thankful that it is me with diabetes rather than my son. Fingers crossed it stays that way.

I feel exactly the same way also.

 

[Lauras87]

To sound selfish I wouldn't want to be a T1 parent as mum was heart broken when I was diagnosed, she has said that she wanted to taken it away from me as she wants me to have a life.

I did blame her when it all hit me that this would never go away & that must of been hard to hear what I said.

I think being shown how to give a glucagon injection must be heart breaking for a parent, knowing your child may one day need you.

I know some of mum's feeling on having a T1 daughter but I'd never ask any questions.

T1 parents, my hat goes off to you what ever age your child is 🙂

 

[Hanmillmum]

To hear your positive and supportive posts is very reassurring and hopefully all parent members will feel reassured too.

So thanks to you all taking the time to post 🙂🙂 (look the smilies are back!!!)

 

[Julia]

Finding this forum was the first time I considered how hard it is for parents of type 1 diabetics. When I'm having a down-diabetes moment I tend to think "at least it's me and not my child" - and I don't even have a child so cannot understand what that truly means. Sorry that's not a nice thing to say to the parents here, but you all have my respect and admiration. And even if you're kids don't appreciate it now, they will one day (I was in my late 20s when I stopped to think about the effect on my parents!). I wish I had opened up and thanked them earlier😱

 

[Adrienne]

To sound selfish I wouldn't want to be a T1 parent as mum was heart broken when I was diagnosed, she has said that she wanted to taken it away from me as she wants me to have a life.

I did blame her when it all hit me that this would never go away & that must of been hard to hear what I said.

I think being shown how to give a glucagon injection must be heart breaking for a parent, knowing your child may one day need you.

I know some of mum's feeling on having a T1 daughter but I'd never ask any questions.

T1 parents, my hat goes off to you what ever age your child is 🙂

See now this is what us parents do need to hear from our kids you know. I needed to hear what Jessica felt like last November as I couldn't help her if I didn't know and that is my job. You should ask your mum questions you know. I would be more than happy if Jessica started quizzing me. I ask her stuff and I ask you guys stuff as it gives me a small insight to what you are feeling and what my daughter is feeling, that helps me to help her. It really does.

It was quite interesting back on world diabetes day. At midnight on 14 November on my facebook page (and some of you will have seen all this) I started writing my life that day. I decided to write it all down, every thought and every task or act I did. It was quite liberating but it was also eye opening for those that read it. I was inundated with replies on every post. Those who have children with diabetes were replying that they felt the same but had not known necessarily how to express it, those who are my friends who have no idea of the diabetes world were posting just that, that they had no idea what I thought and what I did every single day. The awareness was fabulous. And that was a good day.

It was the day after that, that Jessica came home from school and I knew something was up and I pushed her. She is very intelligent and eloquent and finally she started crying and crying and saying she just wanted to be normal. Gut wrenching or what We sat down together and we spent a long time with my laptop and her reading everything I had written the day before and all the hundreds of responses. She was amazed, she cried more and she laughed as some of it was quite funny (the photo of my view of the car park as I sat in the dark and rain in my car waiting for her at drama for 2 odd hours as the drama staff didn't want the responsibility). She said she wanted to write something so I told her to put it on my fb page. I had a feeling my friends wouldn't let her or me down.

Strangely she was hypo whilst typing (3.8 so not too horrendous) and she typed a long old piece. Well we sat and waiting and the responses to her piece started coming in. In the end I think there were around 160 plus replies. So many people were showing their own children with t1 and those children were saying 'yep that's how I feel'.

So on the back of that we are working on it. I have explained it like a filing system in her head. At the moment she is thinking diabetes and testing all day at school and she doesn't want to. I told her to think of it as a filing cabinet and when it was time to test, the testing file came to the front of her head and she tested (we timed a test and it took 51 seconds to do). Once she tested that file could then be put back at the back of the filing cabinet and she didn't need to think about it again until the next testing time. We have other things going as well but she understood that and we are getting there. I'll try and find what she wrote and post it here as it gives other parents an insight as to what their children may be feeling.

 

[Adrienne]

Finding this forum was the first time I considered how hard it is for parents of type 1 diabetics. When I'm having a down-diabetes moment I tend to think "at least it's me and not my child" - and I don't even have a child so cannot understand what that truly means. Sorry that's not a nice thing to say to the parents here, but you all have my respect and admiration. And even if you're kids don't appreciate it now, they will one day (I was in my late 20s when I stopped to think about the effect on my parents!). I wish I had opened up and thanked them earlier😱

Don't you worry about that, I agree with you, I would rather it be me and not Jessica so absolutely understand your sentiment xx😛

 

[everydayupsanddowns]

To hear your positive and supportive posts is very reassurring and hopefully all parent members will feel reassured too.

So thanks to you all taking the time to post 🙂🙂 (look the smilies are back!!!)

Yay! Pleased to see it 🙂

 

[Caroline]

I think all mums do an amzing job, especially those whose children have a long term medical condition.

I have a child with ASD, I know what it is like looking after and loving him and while I don't understand what it is like to be the parent of a child with other long standing medical condtions, I can undestand how frustrating it can be at times to look after our special people.

On this forum we have a variety of experiences, and for the most part people are friendly helpful caring and compassionate as well as offering much needed and much welcome support. We all benefit from each others experiences and insites into things, so thank you all for being here.

 

[Copepod]

Finding this forum was the first time I considered how hard it is for parents of type 1 diabetics. When I'm having a down-diabetes moment I tend to think "at least it's me and not my child" - and I don't even have a child so cannot understand what that truly means. Sorry that's not a nice thing to say to the parents here, but you all have my respect and admiration. And even if you're kids don't appreciate it now, they will one day (I was in my late 20s when I stopped to think about the effect on my parents!). I wish I had opened up and thanked them earlier😱

Quite agree - I was unlucky to get T1D, but my parents and I were "lucky" to get it as an adult. Of course, things have moved on, some for better / easier, some for worse / harder eg now basal bolus or insulin pumps compared to earlier bimodal insulins; now blood glucose meters etc.

 

[Caroline]

Quite agree - I was unlucky to get T1D, but my parents and I were "lucky" to get it as an adult. Of course, things have moved on, some for better / easier, some for worse / harder eg now basal bolus or insulin pumps compared to earlier bimodal insulins; now blood glucose meters etc.

Anyone to get diagnosed with anything that is never going to go away is unlucky. I do feel we are better off than many with support from this forum even when our medical support leaves a lot to be desired.

Everyone here is a hero or heroin, and the parents of children with the dreaded D are extra special.😎

 

[Adrienne]

Jessica's post

Hi

This is what Jessica wrote the day after WDD last year, she was 3.8 and her grammar and spelling suffered for that, she was 12 1/2 years old:

this is jessica here. mum told me to write this on her account because none of my friends would understand.

I've had a really bad day - really bad. i think i must've cried 3 times? 4 times? it all started when we went to hastings to do some shopping and, i forgot my test strips. yeah i was really angry with myself. as was mum when i told her. on the way home from hastings i started to explain how the simple things like making sure i had test strips, was forgotten. i check every morning i have the glucagon in case i need it. the strips get forgotten. so i can't check whether i needed to use the glucagon or not. i was really angry with myself.
then i explained to mum, how, at school, i can't be bothered to test, something else is going on and i want to be a part of it. also i can't be bothered to look atmy pump when it starts to siren because ignored . i don't want to be different. having a test kit that lights me up and a pump that yells at me-it makes me different. i don't want to be different i want to be normal. what's worse is. my friends think it's cool to be diabetic. i get to have an awesome beepy thing an awesome light-y upp-y thing and i eat sugar in class. that's what i hate. why should they love it? they don't understand. diabetes makes me stick out like a sore thumb. my friends think it's fun when I test when i'm hypo bacause i talk rubbish. but i don't like having to rely on a machine to tell me if i'm ok. my friend hannah - she feels sick , she goes to the medical room and goes home has medicine... mum said but that is totally differnt. i said yeah but if i feel ill like that i have to test my blood to check i wont collapse in the next few minutes. it's the same situation but i have to deal with it so differently. i wish i was like hannah. but i'm not. i'll never be. because the diabetes will never go, i can't escape - ever and i know that. i can only dream. and in my dreams i have the perfect life. a life without diabetes.

going back wards a bit i said i couldn't be bothered to test or do my pump right and everything. i said also if i talked to joe solo (ffl) i would say yeah i promise to test. but actually the next day i would totally break that promise and not do my morning test because relying on that machine to tell me if i ok, singles me out. it's horrible. i'm thankful that frederick banting created insulin otherwise i probably wouldn't be here, but really diabetes kills. and most of the time - i'm scared. but because i haven't collapsed say in the middle of cooking class or something because i haven't tested. i can't believe that would ever happen.

mum and i sat down and talked to me how we were normal and my friends were the odd ones, i agreed.but tomorrow i will be just as different as yesterday. and i will feel just as different as yesterday. she can try to let me test less use the sensor and that. but really she can't take away the diabetes, she can't. i will be attached by a tube to a machine that keeps me alive for the rest of my life, i will be sticking needles in myself forever.

sorry it's long but i've had a really bad day. xx


**************************

She is ok now till the next time I guess as I'm sure she will hit these walls. This is why it is important for us (me and Jessica) to know you guys and Jessica loves meeting her own age with d and also adults with d. We just got back from the FFL conference at the weekend and a couple of people from this forum were there who we have met lots of times before and its just fabulous. She feels normal, I feel normal.

xx

 

[Twitchy]

Bless her, that's got me teary...I can relate to that. I still remember particularly in primary school the isolated singled out feeling, my early teen years were tough in a different way because mum was dying of cancer, but in the years after she died I had a definite tussle with D & not wanting to allow or acknowledge it's presence or permanence. In a way I think for me it was perhaps easier as I was on 2 jabs til my late teens, so there was less testing, no pump bleeping etc in front of peers.

When I have 'hate the D' days (& they still bite from time to time), it's not possible to 'chin up & crack on' as it were, I just have to plod through it...later one once I'm feeling more settled I can allow for the idea the diabetes from an early age hasn't been all bad - it's formed how I think (analytical skills, determination, compassion) & has certainly provided me with broader experiences of life than I might otherwise have had. Not least it's been a bl***y good friend/bf filter! (the best people stick around, the shallow or selfish ones drift off!). In time It's like I get to a stage of more or less grudging acceptance with a big dollop of (I think it's tw?!) Trophywench's attitude of 'not going to go away, might as well deal with it' (sorry if I've miss quoted there! 😱)

I'm rambling (will check my bg in a mo lol) but I'm trying to say that hopefully these strong feelings of isolation etc will subside...and as far as I can see they are normal. Having you on her side is an awesome thing for Jessica - I still miss my mum terribly, she was wonderful. I think you two would have got on. Right, defo need to check my levels now, I'm going all maudlin...! 😉

 

[Flutterby]

My childhood with Diabetes from age 11 was different to Jessica's in that certain things didn't exist - pumps, home blood tests etc so it was pretty much guesswork. but I remember how embarrassed I was about urine testing and I remember standing in the kitchen on my own one day and wondering how many needles I'd have to use before I died and I remember the ketoacidosis and hospital admissions and fear. I remember crying because I didn't want to go into hospital again and my Grandparents saying they would treat me to "anything I wanted" if I cheered up and went (not that I had any choice) What I wanted was an end to this awful illness but in the end I chose a signet ring and still, to this day wear a ring on that finger to remind me of my Grandparents.

So I feel for Jessica, my heart goes out to her in fact. And now I'm almost crying too! Love to you both.xx

 

[Adrienne]

Awww you two 🙂

So I know I am probably preaching to the wrong people as I don't have d BUT at this conference we were at I went to a talk by the most marvellous Joe Solo. You should see this first : http://youtu.be/SzEuEl4GiuU

It sounds a bit daft maybe what he is saying about his Diabetes depression days or he also calls them his diabetes duvet days.

In one of his talks 'Its not just a numbers game' he tells us more about these days. His friends start ringing and telling him how fab he is and he starts watching the films and he bolus' for half a tub of ice cream and he answers his phone and says thanks to his friends and by 2 pm he is back at work as he has forgotten why he was having a diabetes day.

We've seen him at all the FFL conferences we've been to, about 5 now I think and he is just brilliant. He will also take any calls from anyone or emails so if anyone wants to get in touch with him I wouldn't think it was a problem. He has had t1 for 52 or 53 years now.

He does another talk 'Where the wild ones are'. This one is about teens and he is very funny.

He also advocated driving over a glucometer but make sure you have another one. He says put it under your front wheel and just drive over it and backwards a few times. The satisfaction is immense.

I have friends who have done this for their children and it is fabulous. I also have a friend whose son has had a few duvet days and my friend texts me the night before and says Jonny is having a duvet day tomorrow can we text him please. So loads of us text him the next day saying how fab he is and he is doing brilliant and whilst he thinks it is all very silly it makes him laugh so brightens his day up.

🙂