Type 1 - I hate this disease

[rachy0121]

Does anyone else feel like when they are talking about diabetes to someone who doesn't have it just not satisfying enough?
I feel the only people who know how I feel are people who have it.
This disease gets me down so much it's bloody exhausting managing it at times and sometimes I just wanna throw my meter out the window and forget I have it. Does anyone else feel like this at times? Sorry for the rant but it winds me up!

 

[daisyduck]

Diabetes can be a pain in the ****, but it's not the worst thing that could happen. I know how you feel though. xx
Hubby is type 1 and has had it for over 25 years. He just treats it like another part of his day, much the same as cleaning his teeth. I think I worry more than he does !
Do you normally have good control ?

 

[Prem51]

I'm sorry to hear you are feeling so frustrated. I have T2 and I feel like that at times, and I think it must be worse for Type 1s.
But we just have to deal with it. It is great that there are people on here who understand how we feel.

 

[wiseowl_123]

Good morning @rachy0121 yes we all feel like that sometimes your not on your own my friend

 

[Freema]

I think diabetes type 1 is much more of a negative invasive feeling in identity to a Young person , it is all day long measuring and counting , not like us type 2, when we have our food right from the start there is not so much work and speculations all day long and worry of getting too much or to little insuline, and on top of those troubles type 1 almost always has to be a little higher in blood glucose than type 2 has to be, and that will lead to complications in very many type 1 very very early in life, which I can understand would be a depressing knowledge to live with for a very young person.
Most of type 2´s are much older when geting the disease and have done what we wanted in cutting us loose and behaving wild in partying and youth life, and gettting the disease later in life is usually much more manageble, while having a more stable life and many also having a supporting spouse and family...

there should be much more support for Young type 1 diabetics, like housing with other diabetics while studying (if the person wants that ), and free hollydays vacation treats in summer with other Young people with the disease and other arangements all the year around they can attend...

Young diabetics ought have a kind of union speaking their voice of needs in common in political decisions and media ...

 

[Nidge247]

Does anyone else feel like when they are talking about diabetes to someone who doesn't have it just not satisfying enough?
I feel the only people who know how I feel are people who have it.
This disease gets me down so much it's bloody exhausting managing it at times and sometimes I just wanna throw my meter out the window and forget I have it. Does anyone else feel like this at times? Sorry for the rant but it winds me up!

You need to come on the forum more, and let off some steam!

When I was first diagnosed my friends were interested and eager to talk/listen. However, now when they ask how I am, they only want a brief one sentence reply, otherwise you see their eyes glaze over!

Hopefully you can soon find someone else (possibly through the forum) who lives locally with T1, then you can keep in touch and bounce ideas/results off each other. Also if you can get your DN to get you on a DAFNE course, that's a good way of finding other T1's in your area.

Good luck, and don't forget it's only a condition, and can be managed pretty well with practise and time. Life is a continual learning curve; unfortunately coping with diabetes is not something we are pre-programmed with!

 

[AndyS]

Yup know exactly what you mean. Outside of the forums and the regular T1 pub meetups down in London I don't know / see anyone else that has T1.
Must say though that the pub gatherings that Ewelina and Brian sort out are always a great afternoon.

/A

 

[TallGiraffe]

T1DM can be incredibly frustrating. I have been T1 since I was 8 years old (I am now 24) and I don't really remember any different. Diabetes has always been around, my dad, his brother and their parents were all T1 diabetics so I have always had a rather good support network of people who 'get it', and recently my partner has just been diagnosed too (who would have thought it?). Having said that, even a great support network can't stop you feeling like you hate the World, like you just want to give up and hibernate under the duvet for the next century. I have always thought people who don't have T1D never really understand how difficult and consuming it is. Even my partner (diagnosed 2 months ago) said that he never realised how difficult it was to manage and how awful hypos feel until he has been through it. But, try not to let the bad days get you down, the good days hopefully outweigh the bad! I have to say, it is so nice to hear that other people feel the same/going through the same things I have/am, having a place to rant about the **** days will be nice haha!

 

[Heathero]

I have been type 1 for over 50 years now, was initially told may not be safe to have children had to do urine tests and boil syringes and needles got so blunt skin used to pop when forced in. Despite this I have two healthy teenagers.I now find with so many development blood testing and pumps etc it is so much easier. Don't give up hope many of you are young enough to be consider for cures, which seem much more likely now. It can be a pain especially when control gets difficult. I have been there many times, due to age Hypo warnings now less, but managed. Remember that a healthy lifestyle most of the time will ensure good health overall. Best wishes.

 

[Juicyj]

Hi @rachy0121 I think ask any of us and we get this completely. I was having a hypo before partner came home from work last night, he was exhausted from work and so I couldn't even be bothered to say i'd been low, it was as though just on with it, cook tea etc. It's good to blow off steam and I believe we are all like pressure cookers and we need to get it off our chests every now and again, then back on the T1D horse and keep on riding ! Don't chuck that meter though

 

[noblehead]

It's a condition that is with us 24/7 so it's understandable that we can get frustrated and annoyed, but diabetes is just like any other life-long condition and no one can truly appreciate what its like to live it until they are diagnosed themselves.

Maybe attend some of the group meet-ups @rachy0121 to share your thoughts and to speak with other type 1's in a similar position, I'll tag @ewelina into your thread who organises them through the forum.

 

[rachy0121]

Diabetes can be a pain in the ****, but it's not the worst thing that could happen. I know how you feel though. xx
Hubby is type 1 and has had it for over 25 years. He just treats it like another part of his day, much the same as cleaning his teeth. I think I worry more than he does !
Do you normally have good control ?

Hi Daisy duck!
I know it isnt, its just sometimes, when trying to sleep, or getting ready to go out and drive and you suddenly drop its just so aggrevating! Ive had brilliant control in the past, but for some reason the past six months or so its really gone off the hinges and Im so vigorous with it I just dont know how it is happening. Me and my diabetic nurse are trying different techniques to try and get it stabilised again but for now its just all over the place and it p***** me off! so sorry for the rant! xxx

 

[rachy0121]

You need to come on the forum more, and let off some steam!

When I was first diagnosed my friends were interested and eager to talk/listen. However, now when they ask how I am, they only want a brief one sentence reply, otherwise you see their eyes glaze over!

Hopefully you can soon find someone else (possibly through the forum) who lives locally with T1, then you can keep in touch and bounce ideas/results off each other. Also if you can get your DN to get you on a DAFNE course, that's a good way of finding other T1's in your area.

Good luck, and don't forget it's only a condition, and can be managed pretty well with practise and time. Life is a continual learning curve; unfortunately coping with diabetes is not something we are pre-programmed with!

Hi Nidge!
I get what you mean when you say about your friends, I think they ask me if Im ok because they care but dont really take in or can understand how it does affect you.
I have actually found someone who lives a few roads down but unfortuantely she isnt having a good time at the moment with it and is in hospital. I have also attended a DAFNE course which I found really helpful!

I know and thank you for your kind words it is much appreciated! xx

 

[rachy0121]

T1DM can be incredibly frustrating. I have been T1 since I was 8 years old (I am now 24) and I don't really remember any different. Diabetes has always been around, my dad, his brother and their parents were all T1 diabetics so I have always had a rather good support network of people who 'get it', and recently my partner has just been diagnosed too (who would have thought it?). Having said that, even a great support network can't stop you feeling like you hate the World, like you just want to give up and hibernate under the duvet for the next century. I have always thought people who don't have T1D never really understand how difficult and consuming it is. Even my partner (diagnosed 2 months ago) said that he never realised how difficult it was to manage and how awful hypos feel until he has been through it. But, try not to let the bad days get you down, the good days hopefully outweigh the bad! I have to say, it is so nice to hear that other people feel the same/going through the same things I have/am, having a place to rant about the **** days will be nice haha!

Hi TallGiraffe!
Aw wow so you have had it the majority of your life! Did you find having your dad who had it useful? bloody hell your partner has it too! How is he coping with it? Yeah defiantely, my friends always ask me how does a hypo feel and its so undescibable they wouldnt ever possibly understand. No in all fairness I ever rarely feel the way I did when I posted above, its just I have other medical problems that also need monitoring and at times, in my quieter and alone hours I do find myself getting anxious and upset and angry even. It is good to rant isnt it I think its good for the soul!

Many Thanks x

 

[rachy0121]

I think diabetes type 1 is much more of a negative invasive feeling in identity to a Young person , it is all day long measuring and counting , not like us type 2, when we have our food right from the start there is not so much work and speculations all day long and worry of getting too much or to little insuline, and on top of those troubles type 1 almost always has to be a little higher in blood glucose than type 2 has to be, and that will lead to complications in very many type 1 very very early in life, which I can understand would be a depressing knowledge to live with for a very young person.
Most of type 2´s are much older when geting the disease and have done what we wanted in cutting us loose and behaving wild in partying and youth life, and gettting the disease later in life is usually much more manageble, while having a more stable life and many also having a supporting spouse and family...

there should be much more support for Young type 1 diabetics, like housing with other diabetics while studying (if the person wants that ), and free hollydays vacation treats in summer with other Young people with the disease and other arangements all the year around they can attend...

Young diabetics ought have a kind of union speaking their voice of needs in common in political decisions and media ...

Hi Freema!
do you know what I dont know much about type 2. I dont have much knowledge and insight into that sector of the disease! I wish I did actually. I think your right there in saying about having more support for younger people, I do get a feeling that a lot of nurses or specialists assume because we are young we dont worry and dont get anxious about things. but then saying that Im sure alot of older people suffer the same anxiousness about their illness. I mean at the end of the day we all on here have a disease that can be dangerous and time consuming at times.

we're all in the same boat at some time or another I suppose!
xxxx

 

[rachy0121]

I have been type 1 for over 50 years now, was initially told may not be safe to have children had to do urine tests and boil syringes and needles got so blunt skin used to pop when forced in. Despite this I have two healthy teenagers.I now find with so many development blood testing and pumps etc it is so much easier. Don't give up hope many of you are young enough to be consider for cures, which seem much more likely now. It can be a pain especially when control gets difficult. I have been there many times, due to age Hypo warnings now less, but managed. Remember that a healthy lifestyle most of the time will ensure good health overall. Best wishes.

Hi Heathero!
thats amazing you have two kids! were you monitored before having children? I think your right there. It does amaze me what they can do now a days, and hopefully one day there is a cure! I dont know whats happened with my control its just gone crazy, I constantly try to keep on top of things vigilantly but for some reason its just got a mind of its own now a days and it does get me down I feel like **** when they are constanly high then dropping then soaring again.
I am trying a new diet next week and trying to go for sugar free or at least minimal sugar snacks and meals. Dont get me wrong its not like I eat macdonalds and chocolate constantly but a new diet cant hurt and hopefully to get my sugars more stablaised.
Thank you xx

 

[rachy0121]

Yup know exactly what you mean. Outside of the forums and the regular T1 pub meetups down in London I don't know / see anyone else that has T1.
Must say though that the pub gatherings that Ewelina and Brian sort out are always a great afternoon.

/A

Hi Andy!
Its frustrating isnt it from time to time?
Tell me more about these gatherings please? do they organise it for where you are based etc?
Thanks in advance xxx

 

[rachy0121]

It's a condition that is with us 24/7 so it's understandable that we can get frustrated and annoyed, but diabetes is just like any other life-long condition and no one can truly appreciate what its like to live it until they are diagnosed themselves.

Maybe attend some of the group meet-ups @rachy0121 to share your thoughts and to speak with other type 1's in a similar position, I'll tag @ewelina into your thread who organises them through the forum.

Hi Noble head!
It is your right! No no one could really understand!
OK thank you, I do hope to find out more about these
xxx

 

[rachy0121]

Hi @rachy0121 I think ask any of us and we get this completely. I was having a hypo before partner came home from work last night, he was exhausted from work and so I couldn't even be bothered to say i'd been low, it was as though just on with it, cook tea etc. It's good to blow off steam and I believe we are all like pressure cookers and we need to get it off our chests every now and again, then back on the T1D horse and keep on riding ! Don't chuck that meter though

Hi Juicy J
Yeah we all must do at some point !! If not then theres something wrong ha!
Aw bless your heart, so when you get a hypo how do you feel?
Ive been diabetic now for four years and I got my control down to a fine art but its just seems to of gone on a bender for some reason!
xxxxx

 

[AndyS]

Hi Andy!
Its frustrating isnt it from time to time?
Tell me more about these gatherings please? do they organise it for where you are based etc?
Thanks in advance xxx

@noblehead already tagged Ewlina but there is a sticky link at the top of the T1 section. Here's a link though: http://www.diabetes.co.uk/forum/thr...-www-thecarpentersarmsw1-co-uk-findus.114417/

/A