Type 1 - I hate this disease

[Juicyj]

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

My hypos vary most of the time they are just feeling the shakes, getting a sweat and not being able to focus, a couple of jelly babies normally sorts me out - last night I really dipped, I didn't bother testing as i'd taken my glucose and then just went and lay down as I felt really rough, took me about 30 minutes to get back on my feet again, i'd picked my dog up from the vets and he'd had a lump removed and a tooth taken out, he was really feeling sorry for himself so been too busy worrying about him all day and hadn't tested until I got him home, then went down hill from there...

Generally my control is ok - but from time to time I go off the rails completely and it can take me a couple of weeks to get back on track once i've adjusted and got my balance back again, unfortunately with this condition it's a case of testing and reviewing and knowing when to put it right, there really is no time off, my control is affected by so many things, hormones, exercise, stress, heat, illness, sleep, even holidays impacts on my BG levels, so when I saw your post then yes I do hate it too but I don't let it rule my life, am 5 years diagnosed this month, it's gone quickly but when I think about how I was in my first year to how I am now, then I have come a long way.

Have you tried basal testing to see what's going on with your background yet ?

 

[azure]

You're not alone in hating Type 1 @rachy0121 I hate it with a passion. No one without Type 1 can understand the relentless grind day in day out. There's never a break from thinking about the d**n thing. Even when you're ill and just want to go to bed, the stupid diabetes needs attention - and extra attention, at that.

I often wish we could have, say, 14 days holiday a year from Type 1. Actually, even 7 days would be fantastic.

All I can recommend is to channel your hate against the diabetes, and try to keep it controlled. But at the same time, understand that we all have out of range sugars sometimes, and that you can only do the best you can.

 

[Postleneo]

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!

Hi Rachy - i can relate and sympathise - I cant count the amount of times ive felt that way in the past 18 months since being diagnosed T1 - seems like all im doing is trying to deal with this disease and no sooner i get a breakthrough and think ive cracked it ... bang.... levels off the chart and feel so dispondant and p%$"%d off- when i used to talk to friends / colleagues about the difficulties etc at first they seemed interested.... now as soon as the mere mention of diet, injections, appointmenets or anything else relating to diabetes its like 'eyes rolling thinking... oh no not this again'... its so hard at times as it seems that all there is going on is trying to manage this condition but feel i shouldnt talk about it ....get so frustrated ...... shouldnt think it but feel sometimes that everyone should fully experience the life of a type one diabetic for a week so that they can see what its truly like walking in our shoes!!....

 

[AFoxy74]

Hear hear. That's why this forum is so good, we all get it! No eye rolls just ears to listen (metaphorically speaking)

 

[TallGiraffe]

Yeah I can't really remember not being diabetic to be honest! Having my dad being diabetic was so useful, it always felt very normal and I can always ask his opinion because he's had it for 40 years ish now!

My partner seems to be coping well, has many fed up days like we all do but he is doing incredibly well for a newly diagnosed. But then his diet etc has always been sensible as we eat the same meals.

Yes I know how you feel, I almost feel guilty sometimes, which is completely stupid. Managing multiple illnesses does make things hard but hopefully you've got good support through it all?

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

 

[funkydan]

I also hate T1, but I'm hoping to meet some kindred spirits here, so when I do get down (unhappy, not disco dancing!), I can chat with those who understand. My family are great, but they don't have the disease. I'm glad they don't, but they don't always understand.

I'm happy to chat with anyone, if they ever want to talk

 

[Moparp]

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!

I hate it too. I've only had T1 a year and a half. I'm 22. I couldn't be more fed up with it. I can't talk to many people about it and the people I can talk to can't understand fully because they don't have it and they don't really know what to say. I feel like everyone see's me differently now because of it. I feel like I don't fit in. Managing it is ok but the one thing that makes it easier to manage is having the freestyle libre and because I only earn minimum wage I find it hard to put the money aside for my sensors so I don't really have a life. What life I do have is all revolved about diabetes. Being diagnosed recently makes it harder for me because I just want to be back to my old self again. That's all I've ever wanted :/

Rant over.

 

[Dinkeroon]

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!

Hi there, I have been type 1 for 40 years and I still bloody hate it with a vengence. I have gone through times where I rebelled against it, ignored it and used it for a cry for help and still got totally ignored and guess what ? it is still the bain of my life and isn't going anywhere any time soon.
But also don't get fooled by it, you can be a goody two shoes and do everything the so called professionals who by the way read it in a book and don't know what it feels like, tell you to do and it will still come back and bites you in the ****.
I have seen a hell of a lot over 40 years of how Diabetes is handled and it doesn't get any better.
Human pin cushions for everyone to practise on like a dartboard, great.
Answer me this, we are constantly being told to look after our digits ( fingers and toes) so why in hells name do we still have to stab them several times a day, the mind boggles.
I keep hoping 1 day someone will grow a pair and give us some honest answers rather than padding it all out and taring everyone with the same brush, no 2 diabetics are the same and never will be, but the so called book says.
Well burn the sodden book and go with your gut and stop bowing down to the people that don' t know you and live your life how you want to live it cos nobody can live it for you, it willbe however it is and you won' t beable to change that. If it wants to take your kidneys it will. If it wants to take your legs it will, hell if it wants to take your life it will and there is nothing you can do to stop it because the professionals do it all by the book.
Take a hold of your life and live how you want to live, someone will always be there to catch you when you fall.

 

[alhubb]

Yeah I can't really remember not being diabetic to be honest! Having my dad being diabetic was so useful, it always felt very normal and I can always ask his opinion because he's had it for 40 years ish now!

My partner seems to be coping well, has many fed up days like we all do but he is doing incredibly well for a newly diagnosed. But then his diet etc has always been sensible as we eat the same meals.

Yes I know how you feel, I almost feel guilty sometimes, which is completely stupid. Managing multiple illnesses does make things hard but hopefully you've got good support through it all?

Pretty easy to cope with it when I have an awesome girlfriend who looks after me, gives me great advice and helps me as much as she possible can. And also puts up with my mood swings. Thanks @TallGiraffe!

 

[Amy993]

Im 17 and have only been diagnosed for 5 months. I hate it already i was diagnosed 1 week before moving away to college, making life even more stressful! I feel like i am not normal, i cant just go and do something or eat something straight away like my friends. I always have to test my blood etc, and if its low i cant do anything. However, my friends are helping me cope as they have been so supportive. I really hope a cure is found.

 

[alhubb]

Following on from what @TallGiraffe has said. I absolutely hate being T1D, it is awful. Transitioning from being non-diabetic to insulin dependent T1D has been difficult, but has been made so much easier by having spent the last 18 months living with my partner @TallGiraffe and see what she has to do etc and that she's bloody amazing at supporting me. But even with that, it is incredibly difficult. Some friends have been great to talk to about it, some have been worse than useless. My parents and my partner's parents have been great, they're always an ear to voice my frustrations. But at the end of the day, only I understand what it is like to be me with this disease. I could never fully understand what it is like to be my partner with it, growing up with, coping with injections at a young age etc and I still can't the same as she can never understand what is like to get to 31 years old and suddenly have this disease. Unfortunately, I think we're all going to have some level of "you just don't understand" but we have the cards we're dealt with and have to deal with it the best we can, which includes getting annoyed some days and feel like we're struggling. Point is, you shouldn't be afraid to say something if you're struggling and need help and want to air your frustrations, it is completely understandabe

 

[alhubb]

And I writing all this as I am having a hypo... for god sake this diseases is sh*t

 

[Dialer]

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!

HiYa! YES we all get like this, sometimes more than others. As a type 1 for 34 years I still get days like you are having, I get over it by thinking to myself I also have days when I hate traffic jams but have to drive, I hate queues but have to shop and I hate cheap plastic imports that keep breaking but I have to buy them, Rachy it is part of life but the alternative is not very appealing. Chin up you get good days when sevehhns!! come up.

 

[Grimm90999]

I have been diagnosed since June 2016 and have to say I know where you are coming from.
Have the days where I don't want to inject or test at all.
I work as a chef so have long days at work, trying to explain what's it's like to have diabetes or why I'm feeling rough etc to the guys I work with is like trying to explain rocket science to a toddler sometimes. The hardest bit they have to understand is the needing to eat the 3 meals a day as normally before diagnosis I would have skipped 2 meals and just eaten when I got in at midnight.
Hang in there and don't worry about what others understand and don't understand. The important bit is that you are happy with yourself and have everything you need to under control. If they can't understand then they can't understand, don't lose your head or sleep over it.

I'm the only type 1 I know and know loads of type 2's and do find they have trouble understand the difference between the 2 diseases. But hey..... all I can say is I am doing OK and getting through each day and managed to reduce my HB1AC from 68 to 36 in 7 months while keeping the numbers all in control and losing the little weight I wanted to......... so life is good

 

[Deleted Account]

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 ...

You have made the assumption that it is usual for type 1 to be diagnosed whilst young. However, less than 50% or people are diagnosed as a child.
I was diagnosed with type 1 in my 30s and found there was no support as it is assumed by that age you have had it for most of your life. And everything for a newly diagnosed adult with diabetes was for type 2.
I found it difficult: despite being in my 30s, I still wanted a full, active life and no one seemed to know what impact things like trekking for days in the Himalayas or rock climbing in the Alps or sailing across the English channel would have on my BG. Or the mental impact of being told that after 20 years of driving safely, you are no longer entitled to a driving license until you are 70 ... you have to be reviewed every 3 years.

 

[hynes48]

@rachy0121 title "I hate this disease" brought back alot of memories for me. This is a summary of my life with diabetes and how i try and live with diabetes.

I was diagnosed 39 years ago this April. I was 4 at the time. I lived through so many advances but the only one i ever truly wanted to see was a cure. I hated diabetes, I rebelled. I struck out. I got depressed. I just got down right angry.

As a child - parents too frightened to let you do anything on your own, just feeling different .Every adult watching you - no thought for your privacy. Teacher asking, "Mark, are you ok?" in front of the whole class. My parents or parents of friends doing the same out on the street.

As a teenager - jaysus the hormones - the angry really shines through. Rebelling. Anger that it was me that "got it" - there is no trace of diabetes on either side of my family other than me. WHY ME! WHY THE HELL DID IT HAVE TO BE ME!

As a young adult - I made a decision. This disease ends here. This ends with me. I would never be a father. Guilt & fear were the reasons. How could i look my child in the eye and tell them "I gave you this." Worse still, what would they say back to me? I always imagined the worst.

Thankfully, meeting my wife changed my whole perspective on the diabetes. She has alot more sense than me. We have two kids 10 and 7. Neither have it. On saying that, i will never forgot the fear that possessed me waiting for their arrival. It was totally selfish but i just had to know, needed to know, they didn't have it. I still over react. Are they drinking too much, are they going to the toilet too much, are they more lethargic than they should be. I don't know why I am so obsessed about this but the guilt i would feel terrifies me.

My wife thinks I'm nuts. She keeps telling me if it happens so be it and that I turned out alright - I guess that's the rational world colliding with the emotional world!

So, my appraoch to Diabetes now is based on 2 mantra's. My approach may sound naff or downright ridiculous but this is how i deal with it because the resentment i had towards the diabetes was eating me up.

1. LIFE IS NOT FAIR

That is not a complaint. It's a fact. No one promised you it was, you just assume it should be. It isn't. You are what you are and that is what you are in control of. There is no happily ever after where you get kissed by a princess and hey presto you don't have diabetes anymore. My anger stemmed from "WHY ME". The answer is "LIFE IS NOT FAIR". So, when i calm down (I still get angry) i go back to what i have control over. My diabetes.

2. My Body is like a needy child!

I stopped looking at my diabetes as some object or as something i hated. It was part of me. It was part of who I am. I decided to work with My Body (and it's malfunctioning pancreas) to do the best we could to manage the diabetes. I changed my focus from hating the daibetes to helping my body feel good.

If you ignore a child, it will throw tantrums. It will do whatever it takes to get your attention. If you look after them and care for them, they become less needy, less irritable. They become your friend. Kids can annoy you, they can send you around the bend but with proper love, care and attention they are an awful lot easier to be around!

Don't focus on the anger and hatred you have towards the diabetes when things go wrong - it just drains you and once drained you'll still have it! Focus on helping your body - you and your body as team - to manage the diabetes. You'll have lots of fights along the way but ultimately, you and your needy child want the same thing!

Sorry for the very long ramble but i found this oddly theraputic!

 

[JRW]

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!

I was diagnosed late on in life for T1/T3.5C, I was fine for the first three years other than neuropathy when I first brought my BG down from >40mmol to a normal level. After 3 years I went off the rails for about 6 months as I felt I couldn't get a handle on it, I had loads of inexplicably high readings, as well as loads of hypos, I still took insulin but stopped taking my BG levels, as I felt there was no point. I eventually got back on track, but I feel like you that others just don't understand how difficult it is, including work.

 

[rachy0121]

Please tell me what T3.5C is?? Excuse me I've just never heard of it! I always wonder is it anything to do with our honey mood periods that it goes insane sometimes? It is isn't it's hard at times! And yes your right especially with work. Sometimes I feel people think we use it as an excuse xx

 

[JRW]

You have made the assumption that it is usual for type 1 to be diagnosed whilst young. However, less than 50% or people are diagnosed as a child.
I was diagnosed with type 1 in my 30s and found there was no support as it is assumed by that age you have had it for most of your life. And everything for a newly diagnosed adult with diabetes was for type 2.
I found it difficult: despite being in my 30s, I still wanted a full, active life and no one seemed to know what impact things like trekking for days in the Himalayas or rock climbing in the Alps or sailing across the English channel would have on my BG. Or the mental impact of being told that after 20 years of driving safely, you are no longer entitled to a driving license until you are 70 ... you have to be reviewed every 3 years.

I was 38 when diagnosed, agree with you about the lack of support. An opportunity to take part in the 'Three Peaks' challenge came up through work. I liked the idea of it, but didn't put myself forward as I wouldn't have a clue how to effectively manage my BG whilst doing something like that.

 

[rachy0121]

@hynes48. Your reply was very informative and very humbling. I completely understand your fear of not wanting kids. Your reason is my exact reason. I have other medical problems which are genetic and I don't know how I'd cope if I was to have a child with diabetes, or heart problems or spine problems. I couldn't do it so I completely sympathise with why your were so fearful back then. And yes your right we do just have to accept the fact we have this, sometimes life just goes a little wobbly and I have to rant and I find it easier talking to you guys than parents or mates because you guys know exactly where I'm coming from. I very rarely get moments like I do when I wrote my original post. I just needed some assurance I'm not the only one that gets hacked off to the back teeth from time to time xxxx