Type one “getting to me” after 13 years

[ejcaswell]

I was diagnosed with type one diabetes 2 weeks before my 21st Birthday, just as i was going into my third year out of five at University. But from that point on i promised myself i would hold my head up high and never let my diabetes control me or stop me in what i wanted to do..... and over the past 13 years I haven’t.
I have completed many challenges that many said I wouldn’t because of my diabetes, and i am very proud of these achievements. I have seen quite a number of diabetic Dr over the years, due to moving all over the world, and each always go on to say “how well i manage my diabetes” and “how they wish more patients were like me”.
I don’t want to stop pushing myself, trying new things and living the life i want...... but recently it has really gotten to me. I have had to recently have an 8 month long “argument” with my current employers about why i need to have a regular lunch break (its “common” in my profession for colleagues to work through lunch and just keep going, but it is becoming more known that this shouldn’t happen). I have been in this profession now 10 years and always “coped” but i was getting fed up of not getting a basic need such as a lunch break so decided to make a stand. This resulted in a lot of stress and arguments and even though it was agreed as a diabetic i should get lunch (and all concerned knew i was diabetic when they hired me) still were unable to give me a regular lunch until legal points where made more prominent .... but why did it have to get that way? Why did i have to fight for something so obvious as a human being let alone a diabetic, that i needed?
I am starting to get tired of always having to “prepare” to do anything physical, including my day to day job. I do not feel my diabetic management is as good as it could be, with large fluctuations occurring due to the physical and unpredictable nature of my job. So many people, even after trying to discuss with them the issues, pitfalls and extra things i have to do because i am a diabetic, just cant comprehend the things we need to do as a diabetic. Even my husband at times (who generally is very understand and does commonly think of me and my diabetes when doing activities). But i am getting tired of always having to prep for everything i do and feel like i am not doing a very good job of it. All the Dr’s i see don’t really have any real advice on what i should be doing, or how i can manage things better, the only advise i was given was get a continual monitor, which i did 6 months ago. But all that has done is shown me how much i do fluctuate, and i am trying to work on getting a smoother line. Dr’s just tend to spend the allocate 30min time they have with me once a year to say Hb1ac is good, bloods look good....are you going to have kids? No, is that because of diabetes? Do you check ketones? Etc etc and give me very little useable advise. I try and see my diabetic nurse every 3 months, but again i get very little advise out of this and I don’t feel i have moved forward much with any professional help....
Its just getting a bit much, after all this time and achievement i feel i am losing the will to keep fighting.... but I don’t want to, i want to keep living the life i want and avoid as much as possible any potential complications diabetes can bring on. But right at this moment, which is a first in the last 13 years since the day i was told i was diabetic.... i just don’t want to be diabetic any more.........

 

[therower]

@ejcaswell . Welcome to the forum.
Wow that is some post to join the forum with.
It’s a post that the vast majority of T1 diabetics have posted or have wanted to post at sometimes in their lives.
Similar issues myself with work breaks but luckily a far more understanding employer. Nonetheless it does make me feel different and in need. I don’t need a meal break because I’m diabetic, I need a meal break because I’m bl**dy normal.
As for people understanding how we live with diabetes. They never will fully understand.
I don’t know you but I do know you’re a T1 and that’s all I need to know. I can in my own way fully relate to everything that’s going on in your life. Consultants, specialists, friends and even loved ones can never fully understand. It isn’t their fault, they just don’t have T1 it’s as simple as that.
Places like this forum can be a great source of comfort and understanding. Hopefully you will find some understanding here.

As an aside. You’re in NZ I believe. You’ve already got me so envious. Met a few Kiwis ( mostly rugby players) and I have to say you guys and gals seem to have a great take on life.

 

[himtoo]

Hi there @ejcaswell
welcome to the forum !!

all i can really add to what the @therower said is that all of us experience these kind of things in our Diabetic life because the D never takes a vacation , it is there 24 hours a day 7 days a week and invades every single aspect of our lives.

-- it sounds like you are suffering Diabetic Burnout ( which is a real recognised thing ) -- a pattern of thoughts , feelings , and behaviours that we get in to when we are sick of our Diabetes.

the fact that you have come on this forum and told us how you are feeling is a really important first step , because you are truly not alone and the only person that feels like this

if you can , i would tell everyone in your close life that you are feeling this way -- your husband and your diabetes nurse being the main 2.

there are a few books out these that you might consider reading

Diabetes and wellbeing : managing the psychological and emotional challenges of diabetes types

Diabetes Burnout : what to do when you cant take it anymore

Dealing with Diabetes Burnout : How to recharge and get back on track when you feel frustrated and overwhelmed living with diabetes

 

[Diakat]

Hopefully the guys have helped a bit @ejcaswell
This is not an easy ride, well done on coming this far. Diabetes sucks at our lives, but we can keep going and we can teach others to be more sensitive along the way.

 

[Juicyj]

Hello @ejcaswell and welcome

Your in the right place for support - diabetes burnout is a recognised condition and all it takes is a couple of things to tip you over. My best advice is to simply take it one day at a time, don't think about complications as we cannot predict our outcomes, so no point worrying about something that may or may not happen. Try and get some exercise if your not doing so already, even a walk, but lots of deep breaths as this will help calm you. Just remember though, this is a phase and it will pass but go easy on yourself, stick to the basic, test, inject but don't worry about numbers, stress doesn't like diabetes and can affect the numbers so the calmer you feel the better your control, take care, happy to chat if you need someone to speak to

 

[Ica291]

@ejcaswell I hear you so much! I was in the same profession as you (went on maternity leave 2 years ago and didn't go back), I had exactly the same problem. My employers and coworkers always tried their best to let me have a lunch break but you can't stop emergencies, long surgeries and short staffed days from occurring. I did nights too, which was hard. I too, suffered fluctuating sugars but still managed to keep hba1c in a goodish range so no one really pushed anything. Problem with hba1c is it isn't completely accurate at showing control, the continuous monitors are the best at that.

Interestingly, they stopped me doing nights once I fell pregnant because I obviously wasn't much use in sole charge. They took the pregnancy way more seriously than my diabetes but I guess the bump is a permanent reminder.

I've since got a pump and that really helps stop the fluctuations, but I've also gone on a pump since leaving the profession.

Unfortunately, I don't think attitudes to diabetes in our profession will change any time soon. It sounds like you are doing an amazing job and it's fantastic that you have a supportive husband.

I hate diabetes, having a hypo with a baby whilst out with the dogs is one of the most stressful things on the planet. It is also a lonely thing, because only other type 1s really understand how you feel at times.

I get you. I completely agree. And I never talk about it with family and friends because I'm not very good at doing the poor me thing, but you know what? Sometimes we bloody need to because it's hard to be positive when you have a bad day of blood sugars for no apparent reason, or you're tired of needle bruising and painful injections, pump insertion problems.... The list is endless really. But honestly, you're a hero. Don't feel otherwise x

 

[KK123]

Hi there @ejcaswell, I do feel for you. You have fought for what is a basic right for everybody, ie a break to have a meal! I suspect the stress of that comes from being made to feel as if you are a nuisance or somehow receiving 'special treatment'. You are very brave as far as I am concerned, you have stuck up for yourself (and others along the line) which can be very hard to do. YOU need to eat and manage a terrible condition and although it is easy to say, PLEASE don't let anyone chastise you for it. As for having to 'prepare' in advance when doing things, I do know what you mean. I can't think of any way around that to be honest, no Dr will be able to give any advice as far as I'm concerned, not unless they are living with it themselves. It is a never ending thought process and all I can say is you seem to be doing SO well, please don't give up, sending you love. x

 

[Robinredbreast]

I was diagnosed with type one diabetes 2 weeks before my 21st Birthday, just as i was going into my third year out of five at University. But from that point on i promised myself i would hold my head up high and never let my diabetes control me or stop me in what i wanted to do..... and over the past 13 years I haven’t.
I have completed many challenges that many said I wouldn’t because of my diabetes, and i am very proud of these achievements. I have seen quite a number of diabetic Dr over the years, due to moving all over the world, and each always go on to say “how well i manage my diabetes” and “how they wish more patients were like me”.
I don’t want to stop pushing myself, trying new things and living the life i want...... but recently it has really gotten to me. I have had to recently have an 8 month long “argument” with my current employers about why i need to have a regular lunch break (its “common” in my profession for colleagues to work through lunch and just keep going, but it is becoming more known that this shouldn’t happen). I have been in this profession now 10 years and always “coped” but i was getting fed up of not getting a basic need such as a lunch break so decided to make a stand. This resulted in a lot of stress and arguments and even though it was agreed as a diabetic i should get lunch (and all concerned knew i was diabetic when they hired me) still were unable to give me a regular lunch until legal points where made more prominent .... but why did it have to get that way? Why did i have to fight for something so obvious as a human being let alone a diabetic, that i needed?
I am starting to get tired of always having to “prepare” to do anything physical, including my day to day job. I do not feel my diabetic management is as good as it could be, with large fluctuations occurring due to the physical and unpredictable nature of my job. So many people, even after trying to discuss with them the issues, pitfalls and extra things i have to do because i am a diabetic, just cant comprehend the things we need to do as a diabetic. Even my husband at times (who generally is very understand and does commonly think of me and my diabetes when doing activities). But i am getting tired of always having to prep for everything i do and feel like i am not doing a very good job of it. All the Dr’s i see don’t really have any real advice on what i should be doing, or how i can manage things better, the only advise i was given was get a continual monitor, which i did 6 months ago. But all that has done is shown me how much i do fluctuate, and i am trying to work on getting a smoother line. Dr’s just tend to spend the allocate 30min time they have with me once a year to say Hb1ac is good, bloods look good....are you going to have kids? No, is that because of diabetes? Do you check ketones? Etc etc and give me very little useable advise. I try and see my diabetic nurse every 3 months, but again i get very little advise out of this and I don’t feel i have moved forward much with any professional help....
Its just getting a bit much, after all this time and achievement i feel i am losing the will to keep fighting.... but I don’t want to, i want to keep living the life i want and avoid as much as possible any potential complications diabetes can bring on. But right at this moment, which is a first in the last 13 years since the day i was told i was diabetic.... i just don’t want to be diabetic any more.........

Hi, sometimes diabetes can get us down, here is a thread from this forum, have a read of the post
*Putting the brakes on Diabetes burnout* it could be helpful to you.
You have had some great advice and support from members and i can't add anything to that, just take care and remember you are not alone.

/www.diabetes.co.uk/forum/threads/diabetes-burnout.13994/

 

[Deleted Account]

Hi @ejcaswell
Diabetes can be a pest ... but so can life.
That may seem very flippant but when life is becoming stressful for me, whether because of work, relationships, medical issues, or whatever, I try to find some way to relax. For me this is exercise (I know, I am strange).
Whilst you can't forget about diabetes, diabetes, should not stop you from relaxing. This may be having a long hot soak in the bath, going for a run, losing yourself in a book or something else.
But, in addition to the great comments above, my advice would be to take some time out (an hour, an afternoon, a weekend, ... however long you want) and chill. I know this is easier said than done but it sounds as if your husband is understanding so between you, I hope you can find a way to not think about the stresses of work (sorry, can't do anything about diabetes) and have a pleasant time.

 

[endocrinegremlin]

I have been there. I understand. I hope you find this place somewhere you can express your emotions and letting it out helps. Remember there aer communities on twitter, fb and instagram if you want to search them out too. You're not alone.

 

[Ica291]

Hi. My partner is a Type 1 IDD and I occasionally post on here as an interested party.

Anyhow, it so happens that I am an employment lawyer. What the OP describes re her work situation does not sound like good practice by the employer, or in the extreme may be illegal. Employers in any civilised country have an onerous duty to be attentive to the needs of a Type 1 IDD and amongst other things have to make reasonable adjustments.

The rights for a Type 1 IDD in the workplace in New Zealand (which is where I presume the OP works) are broadly similar to those in the UK. What kind of work do you do?

I believe its veterinary, as OP is stated as a veterinary surgeon. From my experience, there are many loopholes in veterinary as, unlike doctors, it is privatised and many vet groups opt out of using certain standards. It is common for staff to work over 24 hours with no break in some places. I worked for a group in London where signing their contract meant you couldn't join a union! But it may have changed now..... You would know more being an employment lawyer, which is fantastic to have you on the thread

 

[Notorious]

Hi OP. I think having a bout of burnout is not unusual after getting a CGM for the first time and seeing how well you're *really* doing. I certainly did. It can be both motivating and de-motivating.

I would say, try not to be too hard on yourself. You say you vowed not to let diabetes ever stop you from doing anything. That's an admirable attitude, but it really does need a lot of planning around at times. Give yourself permission to be annoyed!

I would suggest you try and confide that you're struggling at the moment to those closest to you, they may have noticed more than you think. You could also share this article with them.

[[https://www.bigfootbiomedical.com/blog/day-in-the-life-with-diabetes]]

 

[Glucobabu]

I was diagnosed with type one diabetes 2 weeks before my 21st Birthday, just as i was going into my third year out of five at University. But from that point on i promised myself i would hold my head up high and never let my diabetes control me or stop me in what i wanted to do..... and over the past 13 years I haven’t.
I have completed many challenges that many said I wouldn’t because of my diabetes, and i am very proud of these achievements. I have seen quite a number of diabetic Dr over the years, due to moving all over the world, and each always go on to say “how well i manage my diabetes” and “how they wish more patients were like me”.
I don’t want to stop pushing myself, trying new things and living the life i want...... but recently it has really gotten to me. I have had to recently have an 8 month long “argument” with my current employers about why i need to have a regular lunch break (its “common” in my profession for colleagues to work through lunch and just keep going, but it is becoming more known that this shouldn’t happen). I have been in this profession now 10 years and always “coped” but i was getting fed up of not getting a basic need such as a lunch break so decided to make a stand. This resulted in a lot of stress and arguments and even though it was agreed as a diabetic i should get lunch (and all concerned knew i was diabetic when they hired me) still were unable to give me a regular lunch until legal points where made more prominent .... but why did it have to get that way? Why did i have to fight for something so obvious as a human being let alone a diabetic, that i needed?
I am starting to get tired of always having to “prepare” to do anything physical, including my day to day job. I do not feel my diabetic management is as good as it could be, with large fluctuations occurring due to the physical and unpredictable nature of my job. So many people, even after trying to discuss with them the issues, pitfalls and extra things i have to do because i am a diabetic, just cant comprehend the things we need to do as a diabetic. Even my husband at times (who generally is very understand and does commonly think of me and my diabetes when doing activities). But i am getting tired of always having to prep for everything i do and feel like i am not doing a very good job of it. All the Dr’s i see don’t really have any real advice on what i should be doing, or how i can manage things better, the only advise i was given was get a continual monitor, which i did 6 months ago. But all that has done is shown me how much i do fluctuate, and i am trying to work on getting a smoother line. Dr’s just tend to spend the allocate 30min time they have with me once a year to say Hb1ac is good, bloods look good....are you going to have kids? No, is that because of diabetes? Do you check ketones? Etc etc and give me very little useable advise. I try and see my diabetic nurse every 3 months, but again i get very little advise out of this and I don’t feel i have moved forward much with any professional help....
Its just getting a bit much, after all this time and achievement i feel i am losing the will to keep fighting.... but I don’t want to, i want to keep living the life i want and avoid as much as possible any potential complications diabetes can bring on. But right at this moment, which is a first in the last 13 years since the day i was told i was diabetic.... i just don’t want to be diabetic any more.........

I had pretty similar experience with having regular meal breaks and had to resort to quoting employment and disability laws to sort it out with my bosses. But you still hear people grumbling about a person having fixed meal breaks. You just get tired of explaining your situation to every Tom, **** and Harry who is not too keen to understand anyway. Just like you I was praised by doctors as a brilliant patient with excellent readings until I went on Freestyle Libre and found that my control was far from perfect with terrible fluctuations. Of course my average HbA1c was predictably excellent. Now I find myself in constant battle to get anything resembling a straight line! I can absolutely relate to your exasperation about perpetually having to plan every single activity with food and injections in mind. We have to find strength to carry on I am afraid. But you are here in the right place to draw a lot support from fellow Diabetics with wisdom and experience. Wishing you all the best.

 

[Glucobabu]

Don’t know where those asterisks came from between Tom and Harry. Is that auto moderation gone too PC?

 

[evilclive]

Don’t know where those asterisks came from between Tom and Harry. Is that auto moderation gone too PC?

Oh dear, that's quite a funny bit of auto-moderation isn't it Wonder how it does with Scunthorpe.

 

[ejcaswell]

Thanks everyone for your comments and advice. Will take it all on board, as i could very well be having some burnout issues, so will do some reading into the subject.... so thank you.

In answer to some questions, yes i am a Veterinary Surgeon, specifically for large animals, so out on the road in the middle of nowhere a lot, but i have coped well for 10 years doing this in the UK and now New Zealand (5 years UK, 5 years NZ).
NZ is a great place, but a little behind in their diabetes management i feel compared to what i had back in the UK, which leaves me frustrated sometimes (especially since i have some medical knowledge regarding diabetes).
In NZ, the law regarding lunch breaks has changed a few times, but as of the 6th May it is illegal to not have a minimum of 30mins lunch break if working an 8 hour day..... and this is what i got legal advice over which has finally made my employers realise something needs to change (not the fact i/we are human and need a lunch break, more that it will be law).... sadly this’s isn’t the first time i have come across this.... as stated earlier this a very common in the profession which is very sad.

 

[kitedoc]

Hi @ejcaswell, Welcome.
As a retired GP now at the 52 year mark on insulin I empathise with what you are going through.
My brother is a vet in New South Wales so I have an inkling about vet work also.

My 'epiphany' was when working a 12 month term Senior Lecturer position in Newcastle University (NSW) in 1990, and on an after-hours roster.

One night I was called out, in the wind and rain, to an unfamiliar destination outside the city. The patient and his wife lived in a caravan park and I had left straight from work hoping to be able to sort things out without too much delay.
After several false stops I arrived at the park looking for van number 117, with no torch, besides a small examination one, and no brolly!
Being on 'bolus/basal' regime (Actrapid and NPH) I was expecting that delaying my actrapid would allow me to catch up with dinner later.

But the absurdity of the situation hit me at that low point: having to find a house in this weather through my own decision but also through professional obligation - with the added challenge of being alone, running on insulin but relatively un-fuelled. Curse this condition and its restrictions !!

I 'plunged' into the night aided, as I then found, by the excellent lighting in the park itself.
A warm light beckoned at number 117 and an elderly lady and gentleman greeted me with a hot cuppa and towels to dry
myself off.
It turned out to be one of the most heart-warming home visits I had ever made, despite the gentleman's terminal diagnosis.
Those 'peak' experiences seem to wash away the resentments of professional obligation although a 'booster' dose is often needed to get us past the next hurdle at times !! And that diabetes in the end had not stopped me was a consolation.


Clinical work is notoriously inelastic when it comes to timing and bureaucracy as you well know. And I had to rely on that 'gimmick' of skipping a meal occasionally when there was no room clinically to compromise - although I learnt to temporise wherever it appeared safe to do so!!

I agree that having to compromise for each meal, to not have some 'downtime', time to do BSLs even, is unacceptable - the laws were not as strong back then as now.
And I do wonder if diabetes nowadays is better understood by doctors (but still some way to go)!! and bureaucracy.
Another angle to also consider is asking your employers what provisions are in place in case an owner of a pet is diabetic and developed a hypo at the surgery. Involving them in problem solving and showing your worth could be useful !?!

I did not let on that skipping a meal and the pre-meal insulin was a way of coping and this was well before I have learnt another way to deal with it - and that typically after I had retired !!! (vide infra)!!*

What would I do if I was still in clinical practice today and burning out?
A holiday - to take stock, think through options in terms of employment, diabetes management, life choices and future directions - talk to those I could trust about such options ; - seek counselling about feelings and career - as well as not make any important decisions until feeling better and preferably after counselling.
I learned about 'logotherapy' - essentially about finding meaning in one's life. I think that inadvertently my experience of battling along to see the couple in the caravan park provided meaning at a time when I was thinking that being diabetic and doing this work was no longer feasible.
Meaning, I think, is also about feeling valued and respected -And, yes, I have been depressed. It was something that I denied for quite some time - how is a practitioner of a caring profession even allowed to be depressed?
It was a counsellor who was able to point out that the need to be prepared, plan ahead and anticipate problems was a skill acquired from being diabetic and a useful one in any caring profession.
And that not looking after myself diabetes-wise was not a viable option !! I had to learn to see myself as worthy of care and appreciation - to love myself for who I was, verrucae and all.
Other things that helped -
Learning to breathe - the breath-holding, uneven breathing meant my brain could not be in gear
A crisis is defined by being of greater than 24 hours duration
Hobbies and past-times - provided interest outside work, social interaction, share ideas and enthusiasm,
(but I personally do not include bungey-jumping in that list or buying 100 m long yachts)!! Give me learning how to use a sewing machine and making kites any day!!!
Humour - laughter is the best medicine, my injection time was "javelin practice. I read about a husband and son who bet on Mum's BSL before dinner and the loser does the washing up!
And self-humour - I blame errant BSLs on the weather, the season. Getting stressed about it only puts BSLs up. Far better to go into problem solving mode (a cinch for clinicians)! in order to prevent a recurrence.
Support: Family, friends, (physical and virtual) are vital, support groups whether on line such as here.
Education/reading: Diabetes education is life-long
More recently*
Insulin pump: not sure what criteria for and cost of pumps are in NZ. I got one 7 years ago when I was suffering from night-time hypos despite multiple injections of insulin. - I was at risk of losing my driver's license and thus an important part of my work.
A pump helped stabilise my BSLs and I retired 5 years ago on my own terms, unrelated to any health condition.
Low Carb High Fat Diet: I learnt about this diet here and where to learn more about it. On the Home page under Type 1- there is a list of diets used by diabetics, including this one.
After 52 years on insulin nothing had been satisfactory - DAPHNE, GI and GL, you name it !!
Eating less carbs for a condition where BSLs are a problem makes eminent sense - except that we have been told ad nauseam that too much fat, particularly saturated fat, is bad for us.
To convince myself I subscribed to zoeharcombe.com. Zoe is a Welsh nutritionist who has studied this topic, cholesterol, and LCHF diets.
She shows the misinformation in these areas, eg 2018 Lancet article stating that Low Carb diet increases risk of heart disease - she debunks that quite thoroughly, but I had to refer my endocrinologist to her work to reassure him !!
The way I proceeded with this diet was to obtain the e-book, Dr Bernstein's Diabetes Solution 2011 (revised)

Results for me: BSLs generally between 4 and 7, few hypos - needing two meals per day, so lunch gone, hunger, weight usually not a problem. Bolus (= short-acting) insulin before each meal and basal insulin (equiv. to long-acting insulin) reduced - total daily 40 -> 26 units per day.
Re: LCHF diets in NZ see site of Dr Caryn Zinn PhD.
Please keep posting and let us know of your journey - ask whatever questions you need.
Whilst we cannot give medical advice or opinion, we can offer suggestions, references, experience and ideas.
Best Wishes
Fingerpricks.... Mistakes............Be not afraid to......Read, learn..........it is all about...........Nothing is impossible
& needles....................................ask for help...........rinse & repeat.........balance.................(c/- PLK NZ)
..... .. .. ..