Suffering with distress and burnout

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Tori-Hermione

Tori-Hermione

Member
Relationship to Diabetes
Type 1
Hi all

I have been fighting (and gosh it feels that way) type 1 for 3 years since diagnosis but in reality it was gradual onset and the symptoms were appearing almost 9-10 years before.

I moved to Exeter just 6/7 months ago and have found the standard of care really poor here. Mainly due to the system being overloaded with a high population of type 2.

I am really suffering from distress/burnout which started since arriving/4-5 months and not being able to see a diabetes specialist or having access to one started to make me feel very isolated and entirely overwhelmed. Coupled with life stress, isolation, a really gruelling job and general life struggles.

No one is monitoring my levels anymore, and beyond an annual checkup I have little support unless I bark at the doctors.

My doctor stated I was not high risk and due to general decent management I was not able to referred to a diabetes nurse. My last HSA1C was at 4.8% which I worked so hard for so I have often been ignored. Right now that is in rapid decline.

Since my self care is slipping and I am starting to spin out of control and feel utterly lost.

Haven’t been able to find any local support groups or anywhere to let it all out or ask advice. But I am failing to manage for the first time and am starting to feel consumed by it

My insulin tolerance has gone to a ratio of 8:1/7:1 and had a few days at 5:1 and my Basel is currently up to 19. When I arrived I was 25:1 and 11/12. And in the last 6 months I feel like I am rapidly declining.

I managed to see a consultant briefly who just told me it was all stress, and offered no help.

Totally lost and it is now impacting all parts of my life feel like I am starting to give up :’(
 
Welcome @Tori-Hermione Stress can affect blood sugars - surprisingly so. I’d also add that moving house is incredibly stressful, sometimes far more than you’d expect. Also, it’s possible your honeymoon period is ending and that would impact blood sugars too.

I think what you’re describing in terms of care is fairly normal. I only see my consultant annually (well, speak to on the phone actually) and no-one monitors my levels except me. Perhaps your care changed too suddenly and that’s contributing?

You clearly know what you’re doing and can make adjustments as needed. Is it just the feeling of being alone with it all that’s getting to you? If so, you’ve come to the right place. This forum is brilliant for support and has made me feel a lot happier being part of it.
 
Thank you @Inka - I really wish it was the honeymoon period.

I got a severe cold after 9 months of diagnosis that signalled the end, of mine. And my profile changed rapidly down from 30:1 to 15:1/10:1 for a while and through exercise and really good diet I got my resistance back up and was doing so well. I had a seizure after pushing it too hard, and stopped excercising. And since moving I haven’t found the space, time, or will to get back to it.

Just totally fallen off. Which started through high stress. The move, a horrible job, long hours, finances, no support, friendship groups etc.

I have to be honest I feel totally out of my depth for the first time.

And am loosing the will to keep fighting.

Thank you - I have never talked to another diabetic about their experience. I simply haven’t met many at all. Just two so far.

In Cornwall I had a diabetes nurse who I could text, and she always monitored me via libre so was able to give clear advice based on my readings and entry’s.

Maybe I was just lucky and she was a star. Either way I don’t half miss her.

Yes you are probably right. The care pathway felt like it was yanked away from me. I don’t have any other support so it might have jolted me somewhat.
 
So sorry to read you had a seizure @Tori-Hermione Those are horrible and really shake you up.

I don’t know Exeter but I wonder if you could ask for a callback from a hospital DSN? Usually if you phone the Diabetes Centre, you can leave a message and someone will call you back.
 
For burnout, I found lowering my expectations helped. I relaxed my control ever so slightly, and that relieves some of the pressure. A small change but a big effect. I also chose easy meal options where I knew the carbs so there was no counting or worry. I took one day at a time; made sure to not dwell on ‘bad’ results; and reminded myself that I’m not alone ( this forum is great for that).

So, forget your HbA1C (within reason obviously!) Don’t dwell on comparing it to what it was before. Don’t beat yourself up about ‘bad’ results. They’re not bad, they’re just numbers. Focus on things outside the diabetes - hobbies and friends. That doesn’t mean neglecting your diabetes, just not letting it take over.

Don’t worry about ratio changes @Tori-Hermione They’re normal. A higher ratio doesn’t mean you’ve failed. The ratios are just tools to help us manage our meals and insulin. They’re not judgements. I’ve had a 1:5g for breakfast before, but it’s now 1:12g. Neither is better or worse than the other or a sign of worse control or anything.

TLDR - simplify and ease off a little x
 
Hi @Tori-Hermione, welcome to the forum and glad that you have found us. I'm just a 'umble T2 so not faced with the things you are but I might say that if the forum is anything to go by, you are far from alone in your experience when it comes to the way T1 can be viewed by the medical profession.

On the forum we have many years of lived experience for you to tap into and I suggest you do just that. Ask questions, let off steam, join in with the daily conversations in the "waking average" thread. Use us to get ideas knowing that they will be coming from people who totally understand what you are experiencing because they have been there themselves.

I'm not going to offer any thoughts on dealing with T1 burnout. It is outside my experience but it is a topic often referred to on the forum and I am sure members will be along to talk about it.
 
Inka said:
So sorry to read you had a seizure @Tori-Hermione Those are horrible and really shake you up.

I don’t know Exeter but I wonder if you could ask for a callback from a hospital DSN? Usually if you phone the Diabetes Centre, you can leave a message and someone will call you back.
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Yes this does seem to be what they are asking me to do. But only for emergencies I was told. Appreciated x
 
Docb said:
Hi @Tori-Hermione, welcome to the forum and glad that you have found us. I'm just a 'umble T2 so not faced with the things you are but I might say that if the forum is anything to go by, you are far from alone in your experience when it comes to the way T1 can be viewed by the medical profession.

On the forum we have many years of lived experience for you to tap into and I suggest you do just that. Ask questions, let off steam, join in with the daily conversations in the "waking average" thread. Use us to get ideas knowing that they will be coming from people who totally understand what you are experiencing because they have been there themselves.

I'm not going to offer any thoughts on dealing with T1 burnout. It is outside my experience but it is a topic often referred to on the forum and I am sure members will be along to talk about it.
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Aaawww, no worries!

All things are relative just through different lenses or lived experiences. I will try.
 
Don’t forget the diabetes uk phone lines are there - they may not be able to give you the same advice a DSN would but they can help you feel less alone.

Things do change throughout your T1D journey and it doesn’t help to compare your insulin needs with others or with past you. You need to insulin your need.

It’s a marathon not a sprint and having ‘good enough’ readings will save you a lot of stress.

Moving to new area is hard and it takes time to build a community. Try to do thing each week that puts you in the vicinity of people who share an interest with you (choir, knitting, model railways, gym, cricket, dungeons and dragons) and you’ll slowly build a general support system which will take some of the pressure off the diabetes woes.
 
Mate - aren't you having an emergency?

yeah OK you ain't passed out on the floor, fallen off a cliff or bleeding to death, BUT .................!

I too only deliberately first Googled the words 'diabetes support' when I was also at a very low ebb having already existed, reasonably OK apparently with T1 for over 30 years by then - and I still reckon finding the forum I started with (by now defunct and we migrated here) at least saved my sanity, possibly my life cos yes, at times then, THAT low an ebb! So here I still am.

Whatever you are struggling with, whatever you just wonder if - TELL us! ASK us about it!

You've already started to unload your weight by joining - and it's always acceptable to just come on here and have a rant and a moan about whatever, whenever you need to ! So please do give the Careline a ring cos chatting to someone else that speaks our language so we don't have to explain every ruddy thing to first, always helps - cos us lot are always on your side! - honest. 🙂
 
Tori-Hermione said:
Yes this does seem to be what they are asking me to do. But only for emergencies I was told. Appreciated x
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As @trophywench says, it depends what you call an emergency. The fact this is getting to you and you’re suffering burnout is an emergency. I’ve phoned our callback line a couple of times and once it was in a similar situation to you. The DSN most certainly didn’t give me the impression I was wasting her time. She was lovely and I felt a huge sense of relief after talking to her. She could look objectively and suggest solutions whereas I’d been so enmeshed in the emotional response that I felt almost paralysed by it, like I just didn’t know what to do and was falling down a hole emotionally.

I’m sure the ‘only in an emergency’ thing was more ‘only when you need it’ - and it seems like you do so calling them would be perfectly reasonable.
 
Aaawww thank you all. And yes I have certainly hit a low ebb.

And understood and agree @trophywench and @Inka - it’s a strange service here and only between certain hours at weekends so I went via the doctors and will start the process there on Tuesday.

It’s a start and really appreciate the words and advice all. And will certainly use the DSN number in future. x
 
@Tori-Hermione sorry to read about your struggles.
You mention that your Honeymoon period was over nine months after diagnosis when you got a cold.
I suspect it was the cold that caused your insulin resistance to increase rather than the end of your honeymoon period. For those of us diagnosed as adults, this can last years. I found my insulin needs slowly rose (in stops and starts) for eight years before they stabilised to what they are now.
Annoyingly, our insulin needs rarely stay exactly the same as there are so many things that can affect it. So, I am with @Inka that this may be more of your insulin producing cells dying off increasing your injected dose. And it may not be the last - this may not be the end of your honeymoon period.
You seem to be concerned about your insulin dose increasing. Why? We all need different amount. The right amount is what our body needs.

I agree with the other comments that you need to demand help. Whilst your time with a diabetes team is what many of us experience (my last appointment was by phone about 14 months ago and I am still waiting for my next appointment), it does not mean it is the right amount for you. If you need assistance either physically or mentally for your health, you need it.

Take care.
 
Also, be kinder to yourself. A1c of 4.8% is amazing, but if getting to that causes a lot of stress then perhaps the price is too high? And in saying that i don't want to dismiss the hard work you have put in, but what is needed long term is a target that you can reach, gives satisfaction, but not stress.
Good enough is good enough.
Have you been on dafne. I wonder if it may be useful to meet other t1s? If not, perhaps ask to be put on the waiting list?
Perhaps also adjust your range. I usually have my time in range on my cgm 4 to 7.9 but it really does take the pressure off when i change to 4 to 10, which if daft, really, but it helps
 
Hi and welcome from me too.

Really sorry to hear you are going through such a tough time but so pleased you have found the forum as it really is a goldmine of support and advice and knowledge and comradeship that you can tap into any time, so in many respects far better than the clinic because we are here every day if you need us and we understand the frustrations and idiosyncrasies that diabetes throws at us every day. I have learned far more from the good people here than I have from any nurse or consultant but most importantly, the people here understand the psychological impact of it all and just knowing that people here have been there and come out the other side really helps you to keep going.

It seems that perhaps you have fallen victim to your previous really excellent results and are not coping because you are unable to maintain that level at the moment, because other things in your life are taking more of your time and effort and understandably causing you stress. Most of us could not hope for an HbA1c of 4.8 which appears to be 29mmol/mol and would certainly not aim for it, so I think you are probably just putting far too much pressure on yourself. These days most of us go by Time in Range rather than HbA1c as it gives a better picture of how you are doing. A low HbA1c may mean that you are hypo far too much of the time, whereas your TIR will show how much time you spend hypo. I am absolutely not saying this is the case for you but I certainly hypo far too often even if I aim for mid 40s and I have really good management with TIR usually in the 90s and my consultant is delighted with that although I speak to him once in a blue moon on the phone. We are all different and our diabetes and bodies and insulin and the foods we eat and the exercise we take, all affects that. You have to work with where you are now, not how fantastic things were before and accept that you have other priorities in your life at the moment so really just keeping your head above water with your diabetes management is good enough for now. As @Inka says, cut yourself some slack and lower your expectations. Once you have settled in and found your feet a bit in your new life, then you may want to devote a bit more time to improving your management again but you may have to accept that your previous amazing HbA1c results were a one off. Life is for living, not getting the absolutely best diabetes results you can.

I would guess that it is the lack of exercise which is probably bumping up your insulin needs at the moment.... and probably stress too. I am trying to push myself into getting back to daily exercise and even in just 4 days, my basal requirements have come down 7.5 units and bolus also reduced, so exercise can have a huge impact on how much insulin you need and if you were exercising regularly before and are not now, which is entirely understandable in your current situation, then it is totally expected that your doses and ratios will go up. The thing is that you can get them down again when you have the time and energy to start exercising again. In the meantime, you need what you need and you are clearly very capable of adjusting your doses and ratios to balance things, so in reality, you are doing great because you are adjusting things to manage your current situation. You just need to cut yourself some slack and accept that this is all part of the diabetes journey. Nothing is forever. You get good patches of management and rough patches. Enjoy the smooth waters where you can and learn to doggy paddle the rough bits until yoiu get into smooth waters again. If there is one thing I have learned about diabetes (and mental health for that matter) it is that if you hang in there and do whatever you need to do to keep your head above water, it will all come right again sooner or later.

Really hoping that there is some smoother water for you just round the corner.
 
Tori-Hermione said:
Aaawww thank you all. And yes I have certainly hit a low ebb.

And understood and agree @trophywench and @Inka - it’s a strange service here and only between certain hours at weekends so I went via the doctors and will start the process there on Tuesday.

It’s a start and really appreciate the words and advice all. And will certainly use the DSN number in future. x
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Yes do ring the helpline - they are very supportive
 
Sorry to hear you are having a tough time with diabetes distress / burnout. It can be a real swine, and make diabetes management so much harder to work through.

One of our members @SB2015 had a period of emotional distress after living with diabetes for some time, and posted a thread about her experiences and strategies here:

forum.diabetes.org.uk

Successful strategies so far in dealing with depression and Diabetes

I found it tempting to hide away over the last couple of months. After 9 years of Diabetes I finally hit a wall as HbA1c reached the mid 40s and so no longer improved, spinal stenosis gave me numb feet over night, an MRI showing lesions on the brain and I watched my Mum die of Dementia...
forum.diabetes.org.uk forum.diabetes.org.uk
 
Lots of good advice above and on here generally.

I really identify with your situation. I moved to a rural location 8 years ago, lost my father within a few months of that move nearer to him, changed jobs 3 times and then found myself thinking "I can't cope" with the added "bonus" of the full time job that is diabetes management.

4.8 is really tight control and possibly contributing to the levels of stress you are experiencing. When I feel overwhelmed I look at it as if I'm just taking my foot of the accelerator pedal for a bit. That might mean some things don't get done or I don't cook from scratch every night or remind my self that a slightly high result isn't the end of the world.

Another thing I noticed recently was that I was getting very frustrated with my rtCGM libre and constantly just out of range. I went back to do some re- educating of myself with some excellent videos made by the Diabetes techonology network which were linked to on here by @everydayupsanddowns. Knowledge is power etc. etc.

Hope things improve for you soon.
 
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We have a thread in general chat section here: https://forum.diabetes.org.uk/boards/threads/group-7-day-waking-average.20148/

Ignore the title, most folks just shove in their waking reading and its a chit chat after that 🙂 (some don't even post readings). Its more like a check in with folks & talk about the highs and lows of life (not just D).
Just jump in and out as you like but everyone is more than welcome and its a great place to start connecting with others in the same boat as ya.
That thread (and the forums in general) have and continue to be a lifeline for me.

You'll might find that what you perceive as terrible is actually quite good compared to some (by some I'm talking about me :rofl:)
 
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