Type 1: What Would A Cure Feel Like?

Inka

Well-Known Member
Relationship to Diabetes
Type 1
I often think about what a cure would feel like. For me, I see it as a massive relief - a big exhalation of breath, a huge weight lifted, so I can relax, have my mind back, and have freedom.

Breakthrough T1D, formerly known as JDRF, have just released the video below about what a cure would feel like, but what would a cure feel like to you?


(Mods, hope this Breakthrough T1D video is ok to post here. If not, do remove it, but my question stands: what would a cure feel like to you?)
 
I think it would take me a LONG time to actually process it.

I would leap at it, were it available, but I think it would be kinda weird to put all that stuff down. When I was working on mindfulness practice, I realised how almost my entire adult life has been spent always slightly distracted with other thinking / tracking / preparing / strategising and checking. I’m never fully thinking about one thing, because bits of my brain are always off thinking about diabetes.

Having said that, hybrid loop is (at last) allowing me to lay aside some of that constant double-thinking (occasionally!)
 
Yes, mentally it would feel really strange to start with - like big empty spaces in your mind. I often think about a cure as I’m weighing my breakfast cereal. I imagine just shaking out as much or as little cereal as I wanted. The idea seems quite alien now so it always makes me pause and try to get my head round it - eating without thinking.

I liked the way the video had all that noise and then the quiet. That noise is what some days with Type 1 feels like. I also liked the bit where the man was going to leave the house and all he had to pick up was his keys 😎 I dream of not having to carry all the diabetes cr*p around with me!
 
I can imagine me waking up in the middle of the night panicking that I forgot to inject my insulin. I still do that sometimes with locking the door at night. I think it might take quite a bit of time to unlearn the routines that become part of life with diabetes, even in the relatively short time I hav been diagnosed. I think there might be quite a long adjustment period and unsettling feelings of having forgotten to do something during that time, even during the day.
I haven't watched the video because my computer speakers have died and I imagine it won't make much sense without sound.

Oddly I suspect I might miss my Libre reader! It has become such a comfort. You know, a bit like smokers who give up find they don't know what to do with their hands.... Not sure if that makes sense but scanning is a big and reassuring part of my life.

I think it would depend on what the cure entailed as to whether I would jump at it and if it was guaranteed permanent. If for example the islet transplants buys you about 5 years, I would rather not bother than lose the routine I have with my diabetes management and then have to redevelop it down the line.
I have to be honest, thoughts of a cure really don't bother or interest me that much. I think it is because they will not be like flicking a switch and turning it off. There will almost certainly be limitations and complications or drawbacks. I suspect there is more chance of preventing Type 1 than curing it in long term patients.

I am just hugely grateful for all the tech we have which makes managing it so much easier.
 
I think a cure would leave holes. A hole in time and brain power spent (often subconsciously) checking and managing my BG . A hole in my fridge where my insulin lives. A hole in my drawer where all my other diabetes supplies live. A hole in my luggage (and packing time). A hole in geekness as I try to find something else to integrate with my phone (and watch and ...). A hole in my interests as I read up on the latest research. And a hole in the part of my life where the forum lives.

As an aside, I am really please JDRF has changed their name. It felt so out of date and perpetuated the "only children are diagnosed with Type 1"myth. Last time I looked at their website it was mostly about managing diabetes as a child (what to tell the school, what to do at holiday clubs, ...)
 
But holes you could fill with much more interesting things 🙂

@rebrascora Apart from the fact we’re all different and have different and equally valid views, I wonder if the wish for a cure depends on the age of the person with T1 and/or how long they’ve had it? I would love a cure! (Yes, I used all the formatting there for emphasis :D ) I’m heartily sick of diabetes and a cure would be amazing.

The press release along with the above video said, “..we’re incredibly excited to share with you our new film ‘What a cure feels like’. It shows the reality of daily life with T1D and reflects what you’ve been telling us – that your greatest hopes are for a cure.”

I think it’s a reasonable hope and I hope it happens soon 🙂 There might also be transferable benefits to other auto-immune conditions like MS, which would be fantastic.
 
I would welcome some calm and headspace from diabetes. That constant challenge to keep all the plates spinning and keep myself safe and alive, it is a huge pressure. I would love some relief from that.

A cure wouldn't reverse the complications I live with and they have a bigger impact on my life than running my diabetes. It won't get me sight back or my driving licence and it won't remove the ongoing fear of having to deal with amputation of my leg and futher deterioration of my sight. Those are the nightmares I battle with.

I found the 'can you wake up for me, you're having a hypo' triggering. The words of a paramedic speaking to me as I came round. The hypos where I've lost consciousness are stored in my head and I try to keep them buried.

Personally I don't think there will be a cure in my time, although I hope there will be for future generations. There'll be tech that almost does the same but with tech comes a whole new set of plates to spin.

I would welcome some empty headspace, a tiny handbag for just keys, phone and purse and to be an ex Type 1 🙂
 
Reading the thread title the word that came to my mind was also relief. I could feel myself breathing out and relaxing at the thought of life without diabetes
I found the video very powerful.
Having days without all those decisions would be amazing.
 
The beeping at the beginning had me patting my pockets for sweets with one hand & opening my app for the snooze button. Whilst simultaneously thinking which pocket is my meter. Same low sound I use. And the weird thing is I just looked at a 7.8 on my watch, nano seconds before hitting the video play button?
 
I think i would feel relieved. No more constant thinking about diabetes, having to work out insulin to carbs or corrections. No more wondering whether you have enough carbs on board before exercising or making sure you have hypo treatments with you all the time. No more having to eat sweet stuff overnight because of a hypo or feeling like you're a failure because sometimes no matter what you do, you end up too high or too low. No more checking levels before driving or having people say to you "oh you can't eat that can you" or "i don't know how you do it, i couldn't inject myself". No more waking in the night because the alarm is going off.

And finally, a tiny bag with just money, phone and keys would be lovely.
 
Me too! I think I’d still be testing a number of times a day to start with, but that would gradually reduce.
But we would all recognise when levels drop as we recognise the signs rather than people without t1 can't understand why they feel shaky, dizzy, hungry or irritable.
 
I’d be more concerned if BGs headed north, rather than south. Just incase the “cure” went pear shaped?
But we would recognise those symptoms i think. I often have similar symptoms to lows but get tearful.
 
Contrast between leaving house with just keys rather than usual diabetes related gear is very moving in some way, don't know why.

Maybe it's longevity but made my peace with condition some time ago, as where one time would curse it more often than enough. That said there's not one single thing I'd miss about living or managing diabetes if a cure was found tomorrow.

The just picking up key thing in video, maybe it's because we have several small breaks over a year just going away for 2 maybe 3 days at a time, remembering to pack pods insulin sensors bg meter is a bit like a military operation, boarding train & thinking did I pact this or that shouldn't be the norm.
 
Also makes me wonder what would be the one thing you would do immediately after the cure? A lot of the time I’ve idly wondered about sports/cake/drink filled weekends but in reality I’ve sort of landed on better living on the latter two. So maybe for me it would be a hiking/camping type weekend away just to emphasise the lack of D junk brought with!
 
Me too @Mumpie_olgran When I was younger, I used to say that I’d spend 2 or 3 weeks stuffing my face with carbs after a cure, but now age has made me nervous so I’d worry about ‘breaking’ the cure if I did that! Now, I’d go out for a day’s hike and walk and walk without having to worry about my blood sugar or having to eat so many sweets my teeth hurt, and just pack what I wanted in my rucksack. I’d also enjoy randomly going shopping locally or walk the dog without having to mumble through the checklist of crap to take with me for every outing.
 
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