Saturday, 23 July 2011

Our Thoughts On Type 1 Diabetes!



The New Disney Character Who Has Type 1. Love Her & Type 1 Is A Bit Of A Monkey!!!














Thank you for filling in The Type 1 Online Survey. I handed the results to Anna Morton Director Of NHS Diabetes. On a weekly basis I will blog the last part of the survey. This was the opportunity to say how it felt living or caring for someone with Type 1 Diabetes.

What is written below often sums up how I feel or have felt. Whilst I find this sad, I know at least I am not alone and there are so many amazing people out there who truly understand life with Type 1 Diabetes.


Type 1 Diabetes is overlooked and preference for treatment, research etc seems to be given to type 2 diabetics I run high sugar levels as I\'m terrified of going Hypoglycaemic as I\'ve had 3 previous diabetic comas which is extremely unsettling and also means lost income whilst hospitalised (usually 2-3 days) Getting the right care in my opinion (an Insulin pump) just seems to be a lost cause pot luck dictates whether you get it not whether you actually need it or not.

Sad, angry, upset but very proud of ....... and how he deals with it.

diabetes lives with me i don\'t live with it

People do not understand how difficult it is living with diabetes. I have not known anything other than being diabetic and it runs in my family. I make it look dead easy as I have been dealing with it all my life but I still struggle. The worst part is knowing what is wrong and trying to fix it! Although my diabetes team are fantastic and only ever a phonecall away its the tiredness, emtional feelings that can get to me.

People also don\'t understand that EVERYTHING can affext your diabetes control - including the weather and heat. I work for an NHS in Scotland and I am not certain that my current boss understands much about diabetes.

It is very diffult to get the Hospital to move forward with technology. We could get better control if they were better staffed and willing to educate themselves. We have good results (last two HbA1Cs 7.1 and 6.7) but require 7 finger pricks a day and getting up during the night. It is very wearing but being involved with the local support group helps.

turned our whole family upside down.
no support from anywhere other than people on the internet.
no one understands what we go through each day, even DSN doesn\'t.

It can be frustrating at times. When everything is going well you are thrown a curve ball without any warning. I sometimes question what i have done or

my diabetes has never really been controlled in the 12.5 years that i have been diagnosed. i would really prefer to be on an insulin pump, but my hcp dont agree. i feel this would give me quicker access to lowering my blood sugar and prevent so many cases of dka a year, i have currently been admitted with dka 4 times this year. i try not to really plan anything big, as i never know how my diabetes is going to be, and i have had to cancel things at the last minute so many times. i suffer with mental health problems, and i think my diabetes being unstable causes some of my depression

Adjustment after diagnosis is extremely difficult. My daughter was 17 at diagnosis and does all her treatment herself. However, we still attend all her meetings and consultations because she wants us to.

Its a worry because in general, people do not understand the condition unless they live with it. Schools are reluctant to take responsibility for the condition and more than once, my son has been excluded from physical activities representing his school because he was too much of a \'risk\' for teachers who did not understand what to do if he had a \'funny turn\'. He\'s going to be restricted enough on his choice of employment in the future without this type of discrimimation too.

it took a part of my childs childhood and i hate it for that.....it makes me angry when my child is upset poorly and i cant make it better.
its emotonal and my heart breaks so many times a week.
one thing i will always do is to give him normal has much as i can.
life is a battle most days. it takes over your life

Hard

HEARTBREAKING VEIWING, 24/7, UNPREDICTABLE, EXHAUSTING, COMPLICATED, FOREVER !!!!!!!!
horrible rollercoaster that we will never get off

I try my best t manage it but if I \'m on a downer then a dunt give a toss....every days a challenge becuse of peoples preconcieved ideas about diabetes.

Type one rules our life. Its everywhere and we can not ever get a break from it. Its with us 24 hours a day 7 days a week but we dont let it win.

constant worry , every day is a challenge

We used to take meal times and sweets and trips out holidays etc without any thought then Diabetes came into our lives and it feels nothing will ever be the same again all those things we took for granted now have to be planned counted weighed and measured. We fear for our child at night time when she sleeps and dread the tell tale signs of hypos we long for the days long past when she was a happy go lucky litttle toddler and the only fear we had was the normal fears of every other mother.

support is hardly there, having diabetes 11years i was totally unawearment to have every year until this year, male consultants are more intrested in personal life then helping with diabetes. I also deveoped an eating disorder they labeled as \'diabulimia\' this went unrecgonised for around a year and a half even after been hospitalised several times. Every one says there\'s always some one worse off than you, that it shoukdnt stop you from doing anything... Not when you live with diabetes. Its ruined my body, my confidence, whats next...!

Making sure I eat and my blood sugar is above 5 when I am going to drive.

Its a very hard condition to controle all the time, hospitals and the government are not willing to provide the best possible options for the care of individuals diabeties needs, the process of being considdered for pump theripy is a joke, this type of care may cost a greater initial outlay of cash from the government/local funding options or who ever wants to pay for it it would save thousands in the long run and make the patient have a far better quality of life.

Have coped ok - have three children and worked all my life till 57 years of age. Lately I have become frustrated with the inability to control onset of hypos due - even with TBR adjustments on the pump so feel that I\'m losing control of my life.

Thank you for your input & honesty in the survey. ( I have not edited any comments)

1 comment:

  1. Thank you for the info. It sounds pretty user friendly. I guess I’ll pick one up for fun. thank u
    What Is Diabetes

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