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Hi
- Thread starter jcross1
- Start date
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rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi James and welcome from me too.
How do you manage your diabetes.... Multiple Daily Injections (MDI) or a pump and which insulin(s) do you use? Do you have Libre or other CGM to monitor your levels?
Is there anything particular about your diabetes management that you are struggling with or is it the daily grind that is wearing you down mentally. Have you spoken to a DSN or consultant about how you are feeling? "Diabetes burnout" is a well known issue and there are some tactics that members here have found useful to tide them over these difficult spells as well as technology which can sometimes help. Don't think you are alone in struggling because living with diabetes is a huge mental drain and on top of everyday life it can be like having two jobs and this second one you didn't want or apply for and you don't get any weekends off or holidays, so it really can be tough!
Really pleased you have come to the forum for support because it is enormously helpful just to offload these thoughts and feeling to people who really "get it", so you don't feel so alone in facing the many challenges it throws at us, as well as picking up some useful practical tips on how to overcome some of the difficulties diabetes throws at us. We all have slightly different approaches and lifestyles so one person's approach may not be the solution for you, but another person's suggestion might be exactly what you need. The great thing about the forum is that is that you can learn from almost everyone and pick whichever bits of advice resonate with you and try them out and maybe adjust them a bit so they work for you. Good diabetes management is all about experimenting on yourself so there is a lot of trial and improvement involved and then just when you think you have it all sussed, the goal posts move and you have to find new strategies and solutions that work. It helps me to treat it more like a game than a medical condition. Libre helps me with this because I can treat it like a long running computer game. I don't deny that on occasion I have got frustrated and had a few explosive tears when it was really playing up and/or I get it horribly wrong and of course it can be pretty scary when it goes badly wrong but mostly it just ticks along and I win most of the battles and lose a few. I make a point of giving myself a mental pat on the back when I get a good result and if I have a less than good one, I try to learn from it and move on. You can't win them all!
How do you manage your diabetes.... Multiple Daily Injections (MDI) or a pump and which insulin(s) do you use? Do you have Libre or other CGM to monitor your levels?
Is there anything particular about your diabetes management that you are struggling with or is it the daily grind that is wearing you down mentally. Have you spoken to a DSN or consultant about how you are feeling? "Diabetes burnout" is a well known issue and there are some tactics that members here have found useful to tide them over these difficult spells as well as technology which can sometimes help. Don't think you are alone in struggling because living with diabetes is a huge mental drain and on top of everyday life it can be like having two jobs and this second one you didn't want or apply for and you don't get any weekends off or holidays, so it really can be tough!
Really pleased you have come to the forum for support because it is enormously helpful just to offload these thoughts and feeling to people who really "get it", so you don't feel so alone in facing the many challenges it throws at us, as well as picking up some useful practical tips on how to overcome some of the difficulties diabetes throws at us. We all have slightly different approaches and lifestyles so one person's approach may not be the solution for you, but another person's suggestion might be exactly what you need. The great thing about the forum is that is that you can learn from almost everyone and pick whichever bits of advice resonate with you and try them out and maybe adjust them a bit so they work for you. Good diabetes management is all about experimenting on yourself so there is a lot of trial and improvement involved and then just when you think you have it all sussed, the goal posts move and you have to find new strategies and solutions that work. It helps me to treat it more like a game than a medical condition. Libre helps me with this because I can treat it like a long running computer game. I don't deny that on occasion I have got frustrated and had a few explosive tears when it was really playing up and/or I get it horribly wrong and of course it can be pretty scary when it goes badly wrong but mostly it just ticks along and I win most of the battles and lose a few. I make a point of giving myself a mental pat on the back when I get a good result and if I have a less than good one, I try to learn from it and move on. You can't win them all!
Hi, too be honest I think I have been in denial about it for ages and has not really got me anywhere. I have recently changed jobs which has not helped and the reality of the disease is overwhelming. Have just been on holiday ( after not being away for ages) and the realisation that I feel its even more difficult to manage abroad ( or outside my comfort zone) has just kind of knocked me for 6. Thanks for your reply 🙂 how do you cope with your diabetes?
Hi Barbara,
Thanks for your reply.
At the moment I am on MDI and using the freestyle libre 2. Unfortunately my diabetes clinic does not have any psychological support available, which I am massively disappointed in. In actual fact I am going to write to my MP about this because I think that this would be a huge benefit to Diabetes management.
Thankyou for pointing out that I am not alone as sometimes it really does feel like I am alone but hopefully joining the forum will help. I also really like your analogy of using your Freestyle libre as a long running computer game, that is really cool.
Also am going to try and take your advice of acknowledging the wins in this battle as I am definitely really hard on myself in trying to have "near perfect" Blood Sugars.
Thanks for your advice and nice to meet you.
James
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
I cope by keeping it in a little compartment in my mind. I try not to think about it except in a chore type way. I also keep breakfast and lunch similar each day so I don’t have to think too much about carbs or anything. This saves a fair bit of mental effort. I also move on mentally pretty much immediately from any ‘bad’ numbers. It’s not like I did it on purpose, right? So, there’s no point dwelling on it.
On holiday, I’d eat what I wanted within reason. It is a bit nerve-wracking but I always carry lots of hypo treatments and snacks. I refuse to let diabetes rule my life - or take up my every thought.
On holiday, I’d eat what I wanted within reason. It is a bit nerve-wracking but I always carry lots of hypo treatments and snacks. I refuse to let diabetes rule my life - or take up my every thought.
I like that idea of keeping it in a little compartment in your mind that is cool. I also have similar breakfast and lunch to help the mental aspect of it. I had a few days on holiday where I ate sugary stuff and tried to bolus for the adjustment but my sugar readings didn't seem to want to play ball !
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
I find some walking and sightseeing works off any bolus mistakes @jcross1 At least you tried some special foods 🙂 Blips are normal with diabetes, and yours was for a holiday treat rather than because you estimated your potato portion wrongly.
I should also have said that I find this forum fabulous. It’s so good to know you’re not alone.
I should also have said that I find this forum fabulous. It’s so good to know you’re not alone.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
I think one of the many benefits of this forum is comparing notes with others and learning that there is a huge range of what is normal, but none of us get perfect results all the time and you have to take the glory from the occasional victories when you can feel really smug that despite all the odds you pulled off a really difficult meal or event. Nearest and dearest don't understand how great it is to achieve those victories but people here do. Similarly, when it is all going horribly wrong, people here understand how frustrating that is and can sometimes suggest things to try to get back on track.
The combined experience and wisdom of the forum "hive mind" is second to none and I would trust the advice of people here over my consultant who is a great guy, but I only have a 10min appointment with him once a year, so he really doesn't know me and my lifestyle like the people here who I regularly share my thoughts and concerns with.
Having had psychological support for stress and anxiety unrelated to diabetes in the past I personally didn't find it all that helpful, so I have less faith in it, but the support and understanding here is amazing and may well be why I haven't had more than very short lived wobbles mentally with my diabetes management. Managing diabetes with insulin is really tough though, so please do cut yourself some slack. You do have to reassess your mental attitude from time to time and challenge yourself not to feel guilty or be overly hard on yourself.
As regards practical help have you considered whether a Hybrid Closed Loop (HCL) system with a pump might alleviate some of the strain your diabetes is causing you? They are not a quick fix by any means although it is believed that it may be the future for most Type 1s in the next 5-10 years but it is gradually being rolled out to more people and some people here self fund the sensors once they get a pump in order to benefit from the HCL because their area cannot yet fund the whole package. I am not saying a pump is any easier and takes some getting set up but the people here who have HCL find it takes a huge amount of the mental burden off them. Have you ever considered a pump and/or enquired about one with your DSN or consultant?
The combined experience and wisdom of the forum "hive mind" is second to none and I would trust the advice of people here over my consultant who is a great guy, but I only have a 10min appointment with him once a year, so he really doesn't know me and my lifestyle like the people here who I regularly share my thoughts and concerns with.
Having had psychological support for stress and anxiety unrelated to diabetes in the past I personally didn't find it all that helpful, so I have less faith in it, but the support and understanding here is amazing and may well be why I haven't had more than very short lived wobbles mentally with my diabetes management. Managing diabetes with insulin is really tough though, so please do cut yourself some slack. You do have to reassess your mental attitude from time to time and challenge yourself not to feel guilty or be overly hard on yourself.
As regards practical help have you considered whether a Hybrid Closed Loop (HCL) system with a pump might alleviate some of the strain your diabetes is causing you? They are not a quick fix by any means although it is believed that it may be the future for most Type 1s in the next 5-10 years but it is gradually being rolled out to more people and some people here self fund the sensors once they get a pump in order to benefit from the HCL because their area cannot yet fund the whole package. I am not saying a pump is any easier and takes some getting set up but the people here who have HCL find it takes a huge amount of the mental burden off them. Have you ever considered a pump and/or enquired about one with your DSN or consultant?
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
But Barbara - when you change from MDI to a pump is is actually harder work until you get used to its little idiosyncracies - after a fortnight I was ready to bin mine, I was that frustrated with the damn thing but fortunately my beloved husband who knows me far too well commented Oh well - I thought it might be too much for you to grasp and sighed and immediately went back to watching whatever was on telly, or his book. The sarky bar steward!! I'll be blowed if I'll let a bit of plastic beat ME!!! - so I didn't and simply engaged my logic with the limited logic of the bit of plastic (and the few bits of electronic gizmos in the thing) and our relationship improved A Lot. I'm now on my 3rd one, as the ones I've had have all been Roche and don't therefore completely die for ages after their 5 year normal life expectancy whereas Medtronic and others were saying 4 years and hence one of the reasons Coventry decided we all had to have Roche pumps - so we did!
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
Welcome to the forum @jcross1
Sorry to hear that you’ve been feeling overwhelmed by your diabetes recently. Diabetes Distress and Diabetes Burnout are increasingly recognised as widespread challenges for people managing complex conditions like diabetes long term.
But unfortunately, as you have discovered, access to psychological support, especially specialist psych support with experience of diabetes can be really hard to find.
One of the most helpful thing I found when I was struggling was doing just what you are doing now - connecting to others living with diabetes. it can be quite an isolating experience, and having connections with people facing the same daily challenges who ‘get’ all the frustrations and the illogical nature of the game, was a huge help.
Another thing which has really helped with my mental health over the past 5 years, is mindfulness. Which to me is a framework to stop endless (negative) thought-circling, stay present, and to allow things to be as they are moment by moment. There are books and online resources that can get you started.
Sorry to hear that you’ve been feeling overwhelmed by your diabetes recently. Diabetes Distress and Diabetes Burnout are increasingly recognised as widespread challenges for people managing complex conditions like diabetes long term.
But unfortunately, as you have discovered, access to psychological support, especially specialist psych support with experience of diabetes can be really hard to find.
One of the most helpful thing I found when I was struggling was doing just what you are doing now - connecting to others living with diabetes. it can be quite an isolating experience, and having connections with people facing the same daily challenges who ‘get’ all the frustrations and the illogical nature of the game, was a huge help.
Another thing which has really helped with my mental health over the past 5 years, is mindfulness. Which to me is a framework to stop endless (negative) thought-circling, stay present, and to allow things to be as they are moment by moment. There are books and online resources that can get you started.
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