Type 1 - I hate this disease

[rachy0121]

@Dinkeroon I am trying to work with the nurses etc to try and figure out how to stabilise my sugars and sometimes I would like to say "are you diabetic doctor?" When they "lecture" me at times and I know I am constantly on top of it and I'm worn out I would just like to say "do you do this constantly? Don't dig at me for trying my bloody hardest". Although I do realise I know they are there to help. I just get arsey and fractious. Does that make any sense?

 

[bridia12]

do not worry dear folk! I have been Type 1 for only 16 years and have started to get background nephropathy and numb balls of feet. My HbA1C is only reasonable [7 to 8] and I do a lot of exercise [spinning and cycling, as I cannot do much running since my knees went arthritic].

I have lost all my warning signs but get a failsafe new one - which I call retina burn. Suppose you look at the sun very briefly then close your eyes - that hot white burnt image always tells me I am going below 4 [72]. My worst bugbear is at bedtime. My son bless him rings me at 10pm for my bgm reading. He always underestimates my correction injection, I inject a little more, but I always wake up with 12-13. Plus a wee at 4am! I have lots of new routines and eat even better than I used to - I am also a DH [ cousin of coeliac] and have an under-active thyroid. I am a quite fit 72 year old. The only ointment in the fly is that - I read that Life expectancy for a Type 1-er is ten years less than a normal man. Say that is 82 - so, subtract 10, and I am on borrowed time already. I do not worry but I do not think either. Am an Aquarian. God bless you all. There is always somebody much worse off. Don't start me on Mr Trump!?

 

[Jaylee]

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!

Not realy?
I've had some great friends & colleagues over the years. I just convey the mechanical "science" of diabetes.. (Should they be in attendance in the unlikely event of being "hit by a bus.") & keep any "emotional stuff" out of it.. I found the support I had in return nothing short of brilliant!
Occasionally someone might have something equally as frustrating such as "Crohns"? Of which I will show the same respect in return during conversation.. I acknowledge we live our own life experience.

yeah, now & again I do encounter the odd "numpty".. But the acceptance, support & understanding from the majority far out weighs dwelling on the existence of "one fool."

 

[Jaylee]

do not worry dear folk! I have been Type 1 for only 16 years and have started to get background nephropathy and numb balls of feet. My HbA1C is only reasonable [7 to 8] and I do a lot of exercise [spinning and cycling, as I cannot do much running since my knees went arthritic].

I have lost all my warning signs but get a failsafe new one - which I call retina burn. Suppose you look at the sun very briefly then close your eyes - that hot white burnt image always tells me I am going below 4 [72]. My worst bugbear is at bedtime. My son bless him rings me at 10pm for my bgm reading. He always underestimates my correction injection, I inject a little more, but I always wake up with 12-13. Plus a wee at 4am! I have lots of new routines and eat even better than I used to - I am also a DH [ cousin of coeliac] and have an under-active thyroid. I am a quite fit 72 year old. The only ointment in the fly is that - I read that Life expectancy for a Type 1-er is ten years less than a normal man. Say that is 82 - so, subtract 10, and I am on borrowed time already. I do not worry but I do not think either. Am an Aquarian. God bless you all. There is always somebody much worse off. Don't start me on Mr Trump!?

Hi,

The warning signs in the eyes..? Yeah I call it a "heads up display."
For me at night, if I wake low. Dancing lights in the lower field of vision.. "Retinal burn"? Yes sometimes a blue or green (what looks like.) map of France or an "orb."
By day simalar. But also a shimmer at the bottom field of veiw... All coupled with the feeling of walking into a room & forgetting why...

It's a lot more attractive than the sweaty zombie mess I used to be 40 years ago when low.... Still have a clean record of never passing out!

Star sign? "On the cusp".. A lion with crabs...
Lol, I don't wanna talk about Trump either...

 

[JRW]

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

My bad it's 3C, basically it means your pancreas is gone due to other reasons.

 

[Soplewis12]

I find being T1 quite lonely at times, it's not something that I want to talk about to others often but like other posts have said it would be nice if when you are frustrated with results or having a bad BG levels day that friends & family understood just how difficult it can be @ Times. I've also just went from an overactive thyroid to underactive which played havoc with lowering by blood glucose levels, hypoing up to 5 times a day until I eventually got my doses correct, but didn't want to admit that I was really struggling to my family & friends. I rarely moan about it & just get up & on with it but this means that my family can be quite blase about it. Had a terrifying hypo on December 31st, semi conscious but couldn't speak or move. I had Christmas burn out & had slept on & off most of the day. My husband's response to my son (when he raised the alarm) was well what does she expect if she sleeps all day! Probably can guess that I am still furious about this!!!!! But if I put it in context in 27 years of being T1 I have only ever needed support from others twice when in hypo. The forum is great for a good rant. X

 

[chamcham]

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 Rach, I know this is a mega old post, and you likely won't even see this. But on the off chance it finds you, yes, I know exactly how you feel. I've had it 30 years, I'm 38 now. When I got it, I took to it like a duck to water. Adapted easily. By time I was in my teens, I struggled. Always high, the specialists seemed to think I was eating straight sugar cubes. My kidneys are fkd, my nerves are fkd, I have several trigger fingers, tendonitis, tight shoulders and legs because of the affect it has on soft tissue and my eyes have cost me my job, I'm STILL on redeployment, a stress which has made me super suicidal as I'm self reliant and enjoyed my job, and I've spent 2.5 years getting near monthly lasering, injections & had 2 vitrectomys. I cannot lose weight, my levels only stay stable if I don't eat, I basically eat lettuce, eggs, tofu, and mushrooms until they're coming out my ears, and I still look as though I eat pizza and pies 3 times a day. Today I only ate at tea time - scrambled egg, mushrooms, 1/3 tin of baked beans and a handful of honey roasted nuts, did 15 units for just that, went sky high, came down a bit after MORE insulin, the. Started rising again. I hate my body, detested diabetes and now I also resent both as they've cost me my job and security and never ending eye treatment. I can't put into words how much I utterly hate this surge and often think of death and how freeing it would be. I feel like a soul in a meat cage. An ugly, useless, painful, miserable, pointless cage.
I outdid you on the rant, but I get the impression you, at least when you wrote this, felt such despair as I do. Xx

 

[EllieM]

Hi @chamcham and welcome to the forums.

I too was diagnosed aged 8 and suspect I had terrible control in my teens, but this was preglucometer so the only reason I know this is my symptoms (raging thirst) and my very high hba1c when I was given my first glucometer in my early 20s. All I can say that if there was any fairness to this disease I would have massively more complications than I do now.

I have two thoughts about your situation.

Firstly are you getting any help vis a vis your mental state? It's not your fault that you have difficult to control diabetes and complications and any help you can get (counselling, a vent here?) is worth getting.

Secondly, arere your team giving you any helo with your diabetic control now? Just a thought but I find it hard to keep my weight under control and I personally find it goes up whenever my blood sugar goes up.... and creeps down (oh so slowly) when my levels are under control. Some people are just much more insulin resistant than others and need much more insulin. I don't know your insulin regime but if your dosing isn't right it makes things much harder. I would urge you to push them for help as diabetes technology (eg pumps and cgms) and understanding is improving all the time. Just because you struggle iwth control today doesn't mean things can'tget better tomorrow.

Tagging in @DannyH and @Helen40 who may be able to empathise.

Once more, welcome, please don't give up.

 

[Helen40]

Hi @chamcham and welcome to the forums.

I too was diagnosed aged 8 and suspect I had terrible control in my teens, but this was preglucometer so the only reason I know this is my symptoms (raging thirst) and my very high hba1c when I was given my first glucometer in my early 20s. All I can say that if there was any fairness to this disease I would have massively more complications than I do now.

I have two thoughts about your situation.

Firstly are you getting any help vis a vis your mental state? It's not your fault that you have difficult to control diabetes and complications and any help you can get (counselling, a vent here?) is worth getting.

Secondly, arere your team giving you any helo with your diabetic control now? Just a thought but I find it hard to keep my weight under control and I personally find it goes up whenever my blood sugar goes up.... and creeps down (oh so slowly) when my levels are under control. Some people are just much more insulin resistant than others and need much more insulin. I don't know your insulin regime but if your dosing isn't right it makes things much harder. I would urge you to push them for help as diabetes technology (eg pumps and cgms) and understanding is improving all the time. Just because you struggle iwth control today doesn't mean things can'tget better tomorrow.

Tagging in @DannyH and @Helen40 who may be able to empathise.

Once more, welcome, please don't give up.

Thanks @EllieM X @chamcham how are you today? I've had various mini meltdowns recently since my retinopathy just went out of control 3 months ago....too much laser to count, 20 plus injections and now all of a sudden the odd hemmorhage here and thete has become a weekly occurrence......so yep I finally hit rock bottom totally list it, almost split with my partner last night in fact. The point is we get back up, we carry on, having this awful condition will not change who I am. Losing my sight is the scariest thing ever but I will adapt, I will kick ass! I'm going back to my work next week 'no matter what' until my eyes stabilise I have to accept this rubbish and that acceptance is a massive breakthrough, I feel calmer than icve felt in the past 4 years when my biggest worry was losing my licence, now I couldn't care less so long as I can see faces - even my own would be nice lol. The food thing sounds like me, I had a boiled egg and 1 crisp yesterday morning and shot up to 17! Phone my diabetes clinic and I have an appt Monday to find out why! I think after 30 years I've done my time waiting for a pump now! Message me if you'd like, I can't stop anything or change anything but I truly do understand and having that person who is also living through this is a massive help in coming to terms with stuff = the acceptance and determination to keep going, there's really no other choice for me, my family needs ME too much. Let us know how you are OK?

 

[Helen40]

Hey @chamcham hope you're feeling OK, sometimes a good vent is what we all need, and I have certainly done a few times! Just checking in on ya x

 

[ert]

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!

Last night especially. I did two running training sessions yesterday and I struggled to keep my blood sugars above 3.5 mmol/l overnight. I had alarms going off every hour and I had to get up and keep eating. At one stage I thought about throwing my phone out the window. My blood sugars eventually became stable at 4 am. Sending hugs.

 

[Helen40]

I believe human trials have started now fir a drug called Nogo A in switzerland, not only has this been found to inhibit growth of abnormal blood vessels but can also repair! This will most likely be a long way off but how exciting! Just thought I'd share as it gives us all hope there are always new treatments in the pipeline if we just hang on in there! X

 

[CATHYJAY]

Oh I'm so fed up too. I'm not type 1 I'm type 2, got diagnosed when I was 26 now 58 I have had enough my blood sugar is just rising and rising even though I'm on two types of tablets. I can't exercise I have arthritis, just feel low. Fed up of the constant battle.

 

[ianf0ster]

Hi @CATHYJAY and welcome to the forum. Wow, that's a long time to be Type 2.
I'm not sure if that was long ago enough for the dietary advice for Type 2 to be good, or if it was nearly all rubbish like it is now. The idea of eating lots of whole grains and fruit (both of which raise blood glucose) is just crazy, isn't it.

Thank goodness both in this and in the other major Diabetes forum in the UK, we are now coming to our senses, going Low Carb and getting our Type 2 into remission.

 

[ianf0ster]

Since this is a Type 1 thread, I will add that many Type 1's including prior moderators of this forum find that reducing carbs make calculation the amount of insulin they need easier and more accurate, some though find that if carbs are 'too low' they need to calculate insulin requirements based partly on the protein they eat as well as the carbs.

 

[Fenn]

Hi @chamcham and welcome to the forums.

I too was diagnosed aged 8 and suspect I had terrible control in my teens, but this was preglucometer so the only reason I know this is my symptoms (raging thirst) and my very high hba1c when I was given my first glucometer in my early 20s. All I can say that if there was any fairness to this disease I would have massively more complications than I do now.

I have two thoughts about your situation.

Firstly are you getting any help vis a vis your mental state? It's not your fault that you have difficult to control diabetes and complications and any help you can get (counselling, a vent here?) is worth getting.

Secondly, arere your team giving you any helo with your diabetic control now? Just a thought but I find it hard to keep my weight under control and I personally find it goes up whenever my blood sugar goes up.... and creeps down (oh so slowly) when my levels are under control. Some people are just much more insulin resistant than others and need much more insulin. I don't know your insulin regime but if your dosing isn't right it makes things much harder. I would urge you to push them for help as diabetes technology (eg pumps and cgms) and understanding is improving all the time. Just because you struggle iwth control today doesn't mean things can'tget better tomorrow.

Tagging in @DannyH and @Helen40 who may be able to empathise.

Once more, welcome, please don't give up.

Whoa! You had no finger prick testing equipment?

 

[Jaylee]

Whoa! You had no finger prick testing equipment?

We had to pee in a cup. Get a “science test tube” kit out & drop a tab..
This was before pee sticks… not sure about @EllieM . But I wasn’t issued a meter until the late 1980s.

 

[Fenn]

We had to pee in a cup. Get a “science test tube” kit out & drop a tab..
This was before pee sticks… not sure about @EllieM . But I wasn’t issued a meter until the late 1980s.

I’m so grateful not to have been dx as a kid, you guys had it rough

 

[Dexta]

We had to pee in a cup. Get a “science test tube” kit out & drop a tab.

You then had to compare it with the Dulux Paint Chart (joking) and if the test tube ‘contents’ were dark blue then you were either ok or hypo and if they were green or a muddy orange colour you were either high or hyper.

The introduction of glucometers was and still is a significant milestone.

 

[EllieM]

I’m so grateful not to have been dx as a kid, you guys had it rough

Yes and no. Because I didn't really know how high I was running I tended to run quite high, so hypos were rare. And there was no worrying about peaks after meals because you just didn't know about them.

But interesting that @Jaylee got his glucometer in the late 80s, amd pretty sure I got mine a few years earlier. The rollout must have varied throughout the country.