Patients Diabetes (Type 1)
Topic of the discussion
Posted on 04/08/2020 00:00
How are you?
Type 1 diabetes, like most chronic conditions, can challenge aspects of life or make one feel frustrated. I thought today we could talk about those challenges.
What is the most difficult or frustrating aspect of living with type 1 diabetes? Is it related to your diabetes care and management or is it related to something external? Is it the lack of support or understanding from others, the need to closely monitor blood sugar levels? Do you think the general public is informed about type 1 diabetes? Feel free to share here!
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Beginning of the discussion - 06/08/2020What is the most frustrating or difficult aspect of living with type 1 diabetes? https://www.carenity.co.uk/forum/diabetes-type-1/living-with-type-1-diabetes/what-is-the-most-frustrating-or-difficult-aspect-of-living-with-type-1-diabetes-3641
Posted on 06/08/2020 10:03
@Courtney_J I think for me it's a mix of all of the things you mentioned. While things are certainly better nowadays in terms of awareness and information out there on type 1, there is still a ways to go. More distant members of my family seem to still think that I could "heal myself" of my diabetes if I just lose some weight, even though I've had this since childhood. When I was younger I struggled with the upkeep of diabetes because I just wanted to fit in with my friends and not stick out. With time (and age) I've accepted it, but is definitely a defining part of my life and relationships.
Posted on 09/08/2020 10:33
I would like a day off from the constant testing, injecting, counting carbs and not being able to be spontaneous with life!
People saying “oh, you can’t eat that it’s got sugar in”
Posted on 09/08/2020 16:15
A more discreet insulin pump or libre sensor on my arm which random people have tried to pick off my arm in the summer months. Hospitals being made aware we need carbs not salad when we are admitted to hospital. Yes this still happens in this century.
Posted on 10/08/2020 10:33
@Mulligankaren That is truly horrible! I've had my grandchildren try to play with it but never a stranger! Yes I agree, even hospitals are ignorant sometimes. You'd think they'd know better as they're a HEALTH institution! Does my head in.
Posted on 14/09/2020 17:08
Yes, the "upkeep" of diabetes is really very exhausting. You can't really do anything without planning out ahead of time... And then the people who have never seen a diabetes pump or sensor like you all mentioned and stare or ask frankly rude questions.
Posted on 30/09/2020 15:56
Yes, I'd just for ONCE not have to think and do some maths before I eat something!
Posted on 02/11/2020 14:45
Currently that Diabetes means your statistical prospects of dying with Covid are very high. I have quite a bit of contact with people who have a whole range of Chronic conditions and that makes me feel quite thankful so far. Having been Type 1 for well over 50 years, I remind myself what it used to be like in order to lift my spirits. However I totally agree with the frustration that many Professional Health Carers have an extremely limited and often very out dated knowledge of Diabetic management. It also frustrates me that having Paid into the system all my life the care in the NHS is limited and,, that awful but true phrase, a Postcode lottery. My postcode is better than some but it can be exhausting having to fight for better and more modern care.
Posted on 14/11/2020 13:03
I have been type 2, insulin only, diabetic for 9 years. Before diagnosis I was sooo thirsty, I could drink a bottle of fizzy pop in one go, I would put my head under the tap because I couldn't get enough to drink, weight was just dropping off me. My Doctor sent me straight to the diabetic team at the Hospital my 'sugars were in the twenties so I was put straight on to insulin. Here are the main issues with 9 years of this awful disease. My Husband thinks he knows it all and can be very hurtful in his remarks. I give him things to read about it, I sit and try to tell him about it, but he just wont listen. When my sugars are low because I have been racing round the house doing loads of jobs that I hadn't anticipated, he says 'too much insulin' 'pace yourself better''now you are drinking sugar' (small boxed orange juice)The list goes on. I hate being on the receiving end and hate being like this but I have just got to get on with it. Another hate is , I also have asthma and when I have a flare up I have to take prednisalone, this sends my sugars sky high, then I have my check up and find for all the time I have been good and maintained my levels, this one week of taking those tabs has set me back no end. In the early years I would have 'funny does' which alerted me to the fact my sugars were going down, now , nothing until they are low . For me low is 4 so 3 and 2.5 find me shaking, incoherant, sweating profusley, and weak so I am constantly checking my sugars so I don't go into this scarey place Rant over. Thank you for reading and stay safe everyone.