So it's been two and a half years

Hi @RuffsTheShake - think I can resonate a lot with what you've said, I used to be impulsive, adventurous but t1 put paid to that for the fact I have to be ready for anything and organised nowadays, being caught out going high/low etc would ruin a trip/holiday.. I think my struggles came with unrealistic expectations, so being told early on by a nurse to stay within 5-8mmol/l and failing to achieve that daily led me to becoming more anxious, I have now come to a point of acceptance though, I know numbers are just that and should not be viewed as targets, so when I hit 12+mmol/l which happens a lot, I rarely get below 9 all day despite my best efforts, then I just take a breath and literally mentally say next. I have found that by exercising I have freed a lot of my mental anxiety, so just getting the shoes on and running till I am out of breath has been liberating for me, and lastly just remember you work so hard at this so give yourself a break, it's more than a full time job, it's like having a very needy child to care for 24/7, so be kind to yourself.

I think I was lucky when I was diagnosed last year in that the nurse told me that whilst 8 was a target, it would be tough to hit that regularly so just monitor and correct if needed - don't get too hung up on the figures.

BUT I am a lot more cautious about day to day life too, especially because i can drop like a stone with exercise (even walking). It is frustrating. In my early 30s I travelled all over the world and some of those trips I would really struggle with from a T1 perspective (if I could even get insurance).

So I can sympathise without having any useful advice!

I was diagnosed at 6 years old, so have not known NOT being diabetic. I go through "diabetic burnout" a fair few times where I cant be bothered with it and my levels go to pot! Last 2 years I have been very good due to the fact I am now stage 4CKD and it has eventually woken my up and kicked me in the butt to keep at it. As you can see by my HBA1C in my signature

I'm really anxious over everything these days and I'm sure it comes from the t1.
How lovely it must be to just want to do something or go somewhere and not worry you might die if you make a wrong decision all the time.

ExtremelyW0rried said:

How lovely it must be to just want to do something or go somewhere and not worry you might die if you make a wrong decision all the time.

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Isn't that life in general anyway??

RuffsTheShake said:

and I'm over it. I really worked hard when I was first diagnosed, learned all about which foods my body could tolerate and which ones it didn't but yeah I'm just tired and frustrated now. I'm sick of not having the freedom, I'm sick of diabetes effecting my energy levels, I'm sick of the random times when you're sugar goes high or low despite it being something you've done a million time before. I'm so much more of an anxious person now, making sure everything is handled (not just my diabetes but it's spread to everything) and I get obsessive when I can't make sure something will be fine. I used to be much more relaxed and adventurous.

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I started feeling like that in the first few weeks. The first few days, you're like, OK, I can handle this, must get on top of it, solve the problem then carry on as normal, then you realise there is no way to "handle it" you cannot solve the problem and there is no carrying on. My career is basically on hold, I never see my friends anymore because all they ever want to do is eat really unpredictably, and I constantly feel slightly jet lagged. But I have learned it is not politically correct to say so.

porl69 said:

Isn't that life in general anyway??

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To a degree.
But most people don't have to make potentially life changing decisions every time they exercise or eat.

ExtremelyW0rried said:

To a degree.
But most people don't have to make potentially life changing decisions every time they exercise or eat.

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As I stuff another Nakd bar in my mouth en route to the climbing wall, I feel the closest I am to making a life changing decision is when I set the basal rate on my pump. But even then, there is room for error so the chances of a pump mistake changing my life is less than having a crash on the motorway getting to the climbing centre.

helensaramay said:

As I stuff another Nakd bar in my mouth en route to the climbing wall, I feel the closest I am to making a life changing decision is when I set the basal rate on my pump. But even then, there is room for error so the chances of a pump mistake changing my life is less than having a crash on the motorway getting to the climbing centre.

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This kind of moves on quite nicely to what i was about to say on the matter...

A girl i went to school with had an older sister. (about a year older?)

Many, many years ago. the news of this older sister to our village was successful, upwardly mobile, good career, living on a nice location in the "big smoke."
Getting about on her pushbike one day, she was hit by a car. Her injuries sustained were mainly to the head. She lived, but the trauma caused severe neurological damage. She appears to be the victim of a stroke. Game over. A life on "hold."
This was many years ago. She has since resided in the fulltime care of her mother. On a good day a few meters on crutches. On a bad one.. Wheelchair.

She always has a smile when our paths cross. (Always escorted by her now elderly mum.) Tells me i "look well." & is always excited about giving me news on how well her little sister is doing..

ExtremelyW0rried said:

I'm really anxious over everything these days and I'm sure it comes from the t1.
How lovely it must be to just want to do something or go somewhere and not worry you might die if you make a wrong decision all the time.

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But why would you die so long as you test if you're feeling 'off' & either inject or eat? I regularly fall down to hypo levels in the afternoon and just make sure I have glucose tablets on me.

Sure we can't be as spontaneous as people without T1D, but fear of death is a bit of an over-reaction.

Got it when I was 10 and its been a constant balance between chaos and order. At times when I felt like that and struggled with an eating disorder and depression, I just gave into the chaos and did not care. I am not naturally anxious and it didn't seem logical to care because I did not think I could control it. I now have 3 kids and think its my duty to care for myself for their sake and also for my own. I don't always feel great or have perfect blood sugars and it makes me really p'd off when someone asks if ' I have good control' ! Sometimes I do and sometimes its chaos...I have now come to the conclusion that it is impossible to achieve great blood sugars if you are injecting insulin and balancing against your carb intake and the illusion that it is possible or even easy give type 1s a feeling of failing. Like always getting a B minus at best. So I have ditched the carbs and that works better but I am not kidding myself that I will ever get it right which doesn't mean I shouldn't keep trying. And am glad that anyone can say anything on this forum even if it is negative. Here's to free speech.

Jaylee said:

This kind of moves on quite nicely to what i was about to say on the matter...

A girl i went to school with had an older sister. (about a year older?)

Many, many years ago. the news of this older sister to our village was successful, upwardly mobile, good career, living on a nice location in the "big smoke."
Getting about on her pushbike one day, she was hit by a car. Her injuries sustained were mainly to the head. She lived, but the trauma caused severe neurological damage. She appears to be the victim of a stroke. Game over. A life on "hold."
This was many years ago. She has since resided in the fulltime care of her mother. On a good day a few meters on crutches. On a bad one.. Wheelchair.

She always has a smile when our paths cross. (Always escorted by her now elderly mum.) Tells me i "look well." & is always excited about giving me news on how well her little sister is doing..

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That sounds very similar to a life-changing injury sustained by a young woman near to where I live too. It wasn’t just her life that was changed but her parents’ lives too. Heartbreaking. Recovery was long. And will always be incomplete.

Quite a few years ago I used to be upset by the ways that changes in bs levels led to changes in the way I perceived things, and behaved. I was very concerned that people would think hypo- or hyper-me was the ‘real’ me. I was sooooo envious of people who didn’t have such wild influences on their personalities. I also began to question the old assumptions that humans have a steady-state character uninfluenced by the endocrine system.
For example, I began to be far more aware of the ways things went better when people weren’t hungry. I noticed that external factors too effected big changes in people’s behaviour, and I began to feel better about the way T1 affected me.
I still, after all these years, find T1 frustrating, even with the new tech, and on bad days I resent the amount of time spent on ensuring all is as close to ‘normal’ as possible.
However, I decided very early on that I would do all that I could to stop it holding me back, that I would expect others to respect my occasional times ‘out’ from anything that was happening, and that I’d be open about the way it sometimes affected me.
So far it’s worked. That doesn’t mean there haven’t been some difficult times, and there have been many times when I’ve sworn blue murder at it for making things difficult or prolonging/preventing me from getting on with something.
I suppose I’ve had a lot longer to come to terms with it and see it as part of me than those who are more recently diagnosed. Stick in there newbies. No, life won’t be the same; it’s all about being pig headed enough to try to get the best treatment you can for T1 and about being upfront and honest about the ways you hope other people will accommodate it.

Fairygodmother said:

That sounds very similar to a life-changing injury sustained by a young woman near to where I live too. It wasn’t just her life that was changed but her parents’ lives too. Heartbreaking. Recovery was long. And will always be incomplete.

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My husband had a near fatal viral encephalitis a few years ago, causing injuries to several areas of his brain, most significantly the filing system of his memory. He’s recovered about 85% from this, but will never be like he was before. I’ve got T1. Yet we still lead full and happy lives, we just have to make allowances for our various flakinesses and plan a little more. He holds down a full time job, I run my own business, we have a teenager. Both our conditions came completely out of the blue, and of course we’d both rather we were in perfect health. But we’re not. And neither of us are ready to give up on our lives just yet, you have to get busy living or get busy dying.

Mel dCP said:

you have to get busy living or get busy dying.

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It all boils down to how you wish to be remembered.

I know which one I choose to leave behind...

I got diagnosed at 18 months so don't really know another life. I have gone through periods of diabetic burnout (and some mad years of little to no control) but have made the active decision to take what comes and deal with it as best as possible. I live quite a spontaneous life, just always carry a backpack instead of a handbag - so I have insulins and contact lenses wherever I end up! One thing that I have noticed from being part of this forum and meeting more diabetics is that my hypers and hypos aren't as dramatic as they are for people who have been diagnosed more recently (21 years of diabetes!) so even though I have symptoms of both, I recover quite quickly - which is something maybe to look forward to. Diabetes is a pain but I feel confident that I can deal with most situations. I've travelled widely, go out regularly with my friends and I think I have quite a good quality of life. My control isn't perfect, but it is far far better than it used to be when I was aiming to stay in target all the time and getting upset and frustrated when it didn't work, leading to even worse control.

I got a message yesterday form my friend studying for her health psychology exam, where she was reading up on diabetes and said she was in awe of us - having not realised what diabetes can actually mean from both a physical and psychological perspective. Hearing this reminded me that my bad days are justified, we have a hard job, and we're all muddling our way through. You can be spontaneous, you just have to plan for the potential of spontaneity (which sounds absurd!). I don't accept my diabetes every day but remind myself people without things like diabetes also have bad days so I'm allowed them as well - and I relish in those good days when I've got great management! Like the other day I was showing off to all my friends that I had spent all day in target. Most of them didn't fully understand but they were all super supportive. I'm not going to say it gets easier because it is a constant grind, but try and find a balance and allow yourself down days. Talk to people, get people to understand what you're going through as best as they can, develop a support system. Burnout happens to everyone and it's not a reflection on you. Really glad to hear you can also recognise some positives from diagnosis! Good work on two years, and keep muddling through

isjoberg said:

You can be spontaneous, you just have to plan for the potential of spontaneity (which sounds absurd!).

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I understand and agree.
I would extend this to say that with type 1 diabetes, we don't need to plan much more than someone without; because I almost always carry the necessary paraphernalia with us, it stops feeling like planning. How many people plan to take their phone, keys, wallet, ... with them?
This was bought home to me when I went kayaking down the Wye with my boyfriend. I had to plan to pack my diabetes kit. My boyfriend (who has no diabetes) has to plan to pack his hayfever stuff (nasal blaster, eye drops, tablets) and seasickness medicine*. We both had to plan to pack our sunscreen.
Diabetes stuff comes with me wherever I go, whatever I do and wherever I do it. Sunscreen I have to think about because I don't need it for everything: I don't need sunscreen for a work meeting or a night out or a walk in the rain.

*yes, I know the Wye is not the sea but this is a guy who got seasick in a pedalo

If we are organised, we can do spontaneous. I always have all my diabetic needs ready 24/7 to grab and go. I even have a hospital bag packed just in case I need to be admitted in an emergency for non diabetic health issues.

I managed the BG and insulin ok after the initial diagnosis, nerve damage recovery etc. My mental health has decorated massively in the last year though, suffering from depression, and anxiety.