Overwhelmed

[acshakir]

Hi everyone. I’m 23 and was diagnosed with type 1 diabetes 8 months ago. I had just got a new job and my brother and dad had just moved abroad (my mum is still in the country). I have been really struggling to complete day to day activities and am contemplating moving back home for extra support. I was wondering if anyone else had experienced this? Everyone I see seems to take it in their stride so I’m upset that it’s affecting me so much.

 

[Freema]

first of all welcome to this forum acshakir , you have come to the right place for mental support and discussions

I think this is quite common to feel totally overwhelmed... I only got type 2 and found it to be so devastating and shocking an experience... to b diagnosed type 1 must be many times that shock

I´ll tag @daisy1 so you´ll get the information we all get when comming here the first time

 

[catapillar]

What day to day activities are you stuggling to complete and why?

I was living at home when diagnosed, at 25 (it was peak recession) and I was grateful for my mums help with hypos on a couple of occasions (well, one was my very first hypo, which was a false hypo, and the second, well she very sensibly took a knife off me as I was trying to cook to treat a hypo!) but they weren't day to day activities I wasn't capable of doing myself. I moved out less than 12 months after diagnosis and I was very happy about that. It's tough living at home as an adult.

Have you had, or sought, any psychological help with dealing with your diagnosis if you can see it's affecting you so much?

 

[acshakir]

Thank you Freema that’s reassured me a lot and I hope you are doing better now!

 

[acshakir]

What day to day activities are you stuggling to complete and why?

I was living at home when diagnosed, at 25 (it was peak recession) and I was grateful for my mums help with hypos on a couple of occasions (well, one was my very first hypo, which was a false hypo, and the second, well she very sensibly took a knife off me as I was trying to cook to treat a hypo!) but they weren't day to day activities I wasn't capable of doing myself. I moved out less than 12 months after diagnosis and I was very happy about that. It's tough living at home as an adult.

Have you had, or sought, any psychological help with dealing with your diagnosis if you can see it's affecting you so much?

I don’t have the energy to cook/clean etc. I was doing really well at keeping on top of everything at first but now it all seems to be spiralling out of control. Sometimes I just need to come home and have a hug also.

 

[NoKindOfSusie]

I'm very nearly three months in and life basically revolves around dealing with it and distracting myself from dealing with it. One of the things that is starting to really annoy me is the constant "advice" from people who got it under the age of 10 and have no real idea what it's like because they've never had a real life to compare it to.

I wish people would stop telling me I can do "anything I want," well, I'm travelling with work at the moment and everyone went out for a big italian meal the other night and no, I couldn't, in any sane practical reality, do that. I now have a worthless **** body that can't deal with food that is totally normal and everyday. How is anyone supposed to feel about that.

It's not the treatment. I can do that. It's the fact that I can do all the stuff to the absolute best of my ability, eat like some sort of weird religious recluse, spend 95% of my day obsessing over a number, and EVEN THEN you have no idea if you're really doing it right, or if in fifteen or twenty years you will be in real trouble with horrible side effects.

Yes it is overwhelming, how could it not be. I don't even feel like a person anymore.

 

[Freema]

having diabetes is also a real life ... to most it gets lesser of a burden in the longer run... maybe it feels annoying to hear that as long as one is still in the initial shock ... and it is hard work it is like a terrible job initially where one never has any vacations

I feel so much with those who have had diabetes in their childhood so sad that they have had to be so restricted even when being small children that ought never have such a big burden

 

[MeganTetley]

I was diagnosed at 11 so a slightly different situation but I know I wouldn't have been able to survive that first year without my mum around - but she was doing my injections for me for a while.
I just want to remind you that there's no same in moving back to have that support, diabetes is hard to deal with and you have to have people around you to help otherwise it's near impossible. I think we have to have people to help us out when we need it

 

[acshakir]

I was diagnosed at 11 so a slightly different situation but I know I wouldn't have been able to survive that first year without my mum around - but she was doing my injections for me for a while.
I just want to remind you that there's no same in moving back to have that support, diabetes is hard to deal with and you have to have people around you to help otherwise it's near impossible. I think we have to have people to help us out when we need it

Thank you this is very encouraging. I’m hoping I won’t need it forever, just for now.

 

[fletchweb]

Hi everyone. I’m 23 and was diagnosed with type 1 diabetes 8 months ago. I had just got a new job and my brother and dad had just moved abroad (my mum is still in the country). I have been really struggling to complete day to day activities and am contemplating moving back home for extra support. I was wondering if anyone else had experienced this? Everyone I see seems to take it in their stride so I’m upset that it’s affecting me so much.

I would suggest you just take it easy and slow in regard to managing your diabetes. Shoot for the normal range of BG Level but if you find yourself a little higher than that don't worry. In time you will work things out.

I have a real issue with the way we manage our diabetes in this day and age. It is way too complicated, there's expectations from many misinformed health professionals that once you're on an insulin regimen everything should fall in to place and when that doesn't happen it's like you have failed, it's your fault - I've seen that expectation fall among many new diabetics and it drives me crazy.

I'm lucky (as strange as that sounds), I was diagnosed in 1966, had one shot of Lente insulin every morning and would occasionally test my urine. By the time I was 6 years old I was managing my condition myself - it was easy! But in the interest of creating a multi Billion dollar industry we have so many different management products, unrealistic expectations, fake testimonials and different philosophies on how to manage ones condition. I'm just glad I was diagnosed in 1966 instead of 1996 or 2006 or 2017. It would be extremely overwhelming and potentially more dangerous today than what it was in 1966 when I was diagnosed. Not sure if that's progress as I had no issues with my condition back before all these diabetes management products were available.

I noticed you are 23. When I was 23 I was still taking one shot a day, seldom tested, had a rock n roll lifestyle as I was touring in a rock band. Sad thing is - If I was 23 today I don;t know if I would be able to do that or would be psychologically prepared to do that.

So all the best, try to tackle the little things first, eventually things will fall in to place in spite of the situation we diabetics find ourselves in today,

 

[NoKindOfSusie]

Fletch I have no idea whether the numbers I get are okay or not. I do know that in order to get these numbers I am basically my own professional full time nursing staff with very occasional bits of real life thrown in and I am not sure I have it in me to do this forever. But on the other hand the way you used to do it might have been easy but presumably (and I mean nothing personal by this) you would not have had as good control so the long term risks would have been worse. So yeah even now you (by which I mean anyone) could just measure once per day, guesstimate meals and just say screwit and that would be much easier but the consequences of doing that are just hanging over you like a ten ton weight.

So in a way you're right, the treatment instructions are mad, they say "do this impossible thing or you will get extremely awful consequences." And it takes your whole day. But if it helps avoid the consequences.. I don't know how to react to it, it just goes round and round in your head, all day. Yes okay I'm a idiot and a newbie and nobody should listen to me but this stuff is just crazy.

 

[leahkian]

acshakir if you feel that moving back home then do it you have not had diabetes that long and having someone there may help you to relax and understand what is needed to do with your diabetes. Living by yourself sounds as if it is causing you stress which might explain why you are feeling tired but if you do move back home and your still feeling tired you need to see your GP to see if he can find out what it is. You are still new to diabetes and your body may be getting used to the fact but good luck

 

[leahkian]

NoKindOfSusie i sense a lot of anger in what you write and that is a normal feeling when you first get diabetes as it turns your life upside down. You say that people who got diabetes when they were under 10 do not no what a normal life is like, well i got diabetes in 1979 aged 3 and was given a 50/50 chance of living and in them days you had to follow a strict diet and the needles you had to use were much bigger than today. There was no DNS to phone and blood machines and finger prickers were not around. In 2015 i had a 7 hour op for a kidney and pancreas transplant so i have had as you say a normal life to compare it to and i wish i had got diabetes now instead of 1979 as the money being invested and the progress they are making is great. Like i say you have had it 3 months well i will give you a list of thing that my body and family have had to go through laser treatment on both eyes, 6 ops on eyes, admitted to hospital 48 times before i was 21, having children who's mother left them and then watching me go through a transplant so i could see them grow up, mental health problems for 21 years and now after my transplant nerve damage that can not be fixed causing a lot of pain, numbness in hands and below the knee which means i fall over, both bowel and bladder problems caused by having diabetes. So if i had the choice i would have loved to get diabetes in my twenties as i am 41 and been told that the way i am now may be as good as it gets and i will not get back to work in the near future if i ever do. So you are having a bad time getting used to diabetes it does not matter what age you get it. The thing is the longer you have had it the more problems that you have to face, so when you think about those people who got it when they were under 10 just remember they were young and had no idea of what was in store for them but you have a better chance of having no problems as diabetes has come on so much. The anger you feel is the same as we feel and then there is the why me which you will go through, there will be a time when you feel what is the point of all this and the point is do you want to live. Every night i think of what my 12 and 14 year old children have been through which is more than some people go through in a lifetime and if they can come through this, then what type of person would i be to give up. Diabetes is a nasty disease which no one can see so they assume that you are ok the thing is we are all different diabetics, i would not wish diabetes on anyone and i have been drinking and all the things people between 18-30 do. The thing is i am not a diabetic at the moment but i no one day i will be again so i try to remember all the good times and how lucky i am that i am still here,

 

[NoKindOfSusie]

NoKindOfSusie i sense a lot of anger in what you write and that is a normal feeling when you first get diabetes as it turns your life upside down.

It is silly to argue about who has it worse. I will say that you do not understand what it is like to have a life that you are happy with and then lose it. Yes I am angry. I worked really hard and took big risks to get somewhere and then this. I am spitting mad, I am really ****** off. I'm not sure I want to get used to it, I want to understand what normal life is supposed to be like, if I forget that then it really WILL have won.

 

[leahkian]

Diabetes is a life where you do your best or give up and you have said you have worked hard to get were you are today, so now you have a life with diabetes and you have to work hard to keep your blood sugar under control. I new i had a life of ups and downs like you will have done but no matter what i look at people who are worse off than me like people with cancer who are given weeks to live or where i live Bradley Lowery lived near and i was at the first match that he was mascot, when he died i cried because he was so young ans showed other people how to fight till then end. You are angry at the minute, then the shock will hit you and last of all why me and these will occur at other point. If you ask anyone on this site no one whats diabetes or get used to it but we do not get that choice, i have a brother who got diabetes at 32 which is about 15 years ago and has never accepted it we have tried to help him but he won't help himself. He is in hospital more than the doctors but once they have him stable he signs himself out to go back to drinking and taking drugs, he looks like a tramp and owes money to everyone. The last time i new he was in hospital they told him that if he did not change his lifestyle they would refuse to treat him, he had a normal life till he got diabetes but was the same as he was before the diabetes. He does not attend any appointments and thinks that when he needs a kidney transplant he will get one which i told him he would have no chance, he tried to get a insulin pump which he was turned down for because of the way he is. I am not saying that you will end up like him or me but you have to look at the future and look at the the progress they are making with diabetes and think that the progress will help you, it is to late for me but not for you. Like one consultant told me that no on said life was going to be easy but if you post this time next year you will feel that you have made progress even though you might be still be angry. Live your life the way you want to live it and then diabetes will not have won you may have blips along the way but anyone can diabetic or not. It is good to talk as if you don't you will get stress and this will effect your bloods, if you have no one who you want to talk to then talk on here as we all need a rant now and again. My dad got polio when he was 3 and is now 73 and said he would not swap polio for diabetes as he says people can see what is a matter with me but not with you, when i first started going clubbing i would not tell people i was a diabetic because i thought that might put them off, then i thought this is me and i have diabetes so one night i told a girl and she asked if she could catch it if we kissed and i said no but i will turn into a frog. I am not ashamed off being a diabetic and everything that i have been through because off what i have been through enables me to try and help others like new doctors, nurses, going into schools to talk about diabetes and of course people who have got diabetes. With all us oldies you get different examples of how diabetes effect each person different which you will find and having a good job and learning do deal with a major medical condition is hard until you understand how your own body works with diabetes. If you find yourself wanting to talk to or just to let off steam then drop me a line, i may not have the answer but i can listen.

 

[phdiabetic]

Young person living at home here. I don't think I could survive on my own - I like knowing that there's someone watching my numbers, someone who can help if I'm low (not that I've ever passed out), and just having someone take care of me. I struggle with things like showering, getting dressed, anything that involves the tiniest amount of exercise will make me low. So you're not alone, diabetes isn't easy and plenty of people are struggling. Why don't you try moving back in for a bit and see how you go?

 

[NoKindOfSusie]

If you're talking to me, my parents live ten thousand miles away, it would be a bit of a stretch.

 

[landylara]

I'm very nearly three months in and life basically revolves around dealing with it and distracting myself from dealing with it. One of the things that is starting to really annoy me is the constant "advice" from people who got it under the age of 10 and have no real idea what it's like because they've never had a real life to compare it to.

I wish people would stop telling me I can do "anything I want," well, I'm travelling with work at the moment and everyone went out for a big italian meal the other night and no, I couldn't, in any sane practical reality, do that. I now have a worthless **** body that can't deal with food that is totally normal and everyday. How is anyone supposed to feel about that.

It's not the treatment. I can do that. It's the fact that I can do all the stuff to the absolute best of my ability, eat like some sort of weird religious recluse, spend 95% of my day obsessing over a number, and EVEN THEN you have no idea if you're really doing it right, or if in fifteen or twenty years you will be in real trouble with horrible side effects.

Yes it is overwhelming, how could it not be. I don't even feel like a person anymore.

You can eat Italian. If you carb count and have the carbs and cals app on your phone you will be fine. If not sure gestimate and if at next test if high just take amount that you next need with a correction dose. You control the diabetes the diabetes doesn't control you.

 

[Bertyboy]

It is silly to argue about who has it worse. I will say that you do not understand what it is like to have a life that you are happy with and then lose it. Yes I am angry. I worked really hard and took big risks to get somewhere and then this. I am spitting mad, I am really ****** off. I'm not sure I want to get used to it, I want to understand what normal life is supposed to be like, if I forget that then it really WILL have won.

You say "normal life" but I'm not sure I understand what you mean by that? I got diagnosed with T1 just over a month ago. I'm 39, live by myself but work approx. 60 hours a week in a senior engineering job. I've found a few minor grumbles...the wait for results, looking for pharmacies that stock what I need, having to work late to make up for hospital visits, the odd hypo and bulky coat pockets.
But I don't see that anything else changes. Testing only really needs to be done maybe 5-7 times a day and takes seconds, and 2 basal and 2-3 bolus injections also take next to no time. I consider this stuff to be negligible compared to the usual pressures of work and home life.

Perhaps you could ask your GP if there is any counselling you could receive - it sounds like the fear of some change maybe triggering stress or anxiety.

 

[Neoncat]

It is not a competition, there will always be someone better off or worse off than you. But that doesn't invalidate your feelings, you are allowed to feel angry, scared, or nothing at all and no one gets to tell you it is wrong. We would never dream of telling someone who was in a good mood because they had a good sandwich that they weren't entitled too because someone else was happier having just gotten married.

@aschakir after 8 months you might still be going through the stages of grief following diagnosis. It isn't unusual at all to feel like this. If you aren't sure you want to move back home completely are your family close enough that you could make a compromise? Could you visit over the weekends? See them a couple of times a week? Is there a local support group you could join?